The Centre for Disability Law and Policy,
National University of Ireland, Galway,
Voice and Choice
Summer School
Held at the NUI, Galway
19 June 2013
Text streamed live to the web on www.seewritenow.ie
Telephone ……………………………. (0404) 64355
Fax ……………….…………………... (0404) 64354
Email …………………………………. info@pcr.ie
Website ……………………………….. www.pcr.ie
NUI Galway Summer School – 19 June 2013
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NUIG Summer School - 19 June 2013:
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Text live streaming on www.seewritenow.ie
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CHAIR: Hello how are you do I'm Charles Mahony a lecturer here in the law school at NUI
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Galway, based in the centre of disability law and politics as well, you're welcome to the third day
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of our 5th international summer school, hope you are having a nice time and acclimatised to our
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Irish weather.
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We're continuing with our third day with the theme of voice and we have a number of very
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interesting presentations for you this morning and the first one is from Dragana Ciric
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Milovanovic working with disability rights in Serbia she has huge experience of working with
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NGO in the Balkans looking at issue of capacity and disability rights.
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And she authored a really interesting report when she was on the research team of her report
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published by disability rights international called torment not treatment Serbia segregation and
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abuse of children and adults with disabilities.
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And we're very familiar with Dragana here in the Centre for Disability Law and Policy, she is
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involved, she is a partner in a project that's based in the centre here called the person project
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looking at legal capacity in the Balkans and she is going to talk a little about that in her
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presentation and she is going to talk about legal capacity of the perspective of Serbia and using it
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that as a case study I'd like to invite her to address you. Thank you.
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MS MILOVANOVIC: Thank you very much Charles, good morning everyone. Hope you are
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doing well today, it's a nice sunny day. And it's an interesting subject that we are talking about
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today, both this morning and this afternoon, very interconnected topics. And as you will see at
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the beginning of my presentation I wanted to tell you just very shortly about areas of our work,
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because I think it's very important to see the interconnectedness between legal capacity,
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community living and also prevention of torture and ill treatment against persons with
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disabilities.
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So what we are doing in Serbia and also what, what our activities of disability rights
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international worldwide include work with advocates and especially in Serbia we are focused on
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legal capacity reform, also community living and de-institutionalisation and torture prevention.
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You will notice that I wrote here great push but be careful! The reason we are focusing on torture
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prevention is prevention from torture is absolute, it doesn't allow any progressive realisation and
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if we argue that people are actually victims of neglect, victims of torture in closed settings,
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especially if they are deprived of legal capacity then we have a great argument to ask for
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immediate action to stop such abuses.
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Nonetheless, we have to be very careful and later in my presentation I will show you what some
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intervention by bodies, international bodies for prevention of torture had as a consequence in
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Serbia for not really giving precise recommendations when they can result actually in further
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investments in institutions or massive deprivation of legal capacity of people who are already
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detained in institutions.
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Regarding current legislation in Serbia, we don't have really good legislation, the actually very
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bad one. And the issue is regulated not only by one but multiple laws, the biggest part is
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regulated by two laws which is law of non contentious proceedings and family law, that actually
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regulate procedure of deprivation and also appointment of a guardian. Procedure is regulated by
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the law on non-contentious proceedings, and appointment of a guardian is a separate and
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administrative procedure, which is actually regulated under the family law.
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We also have one institute which is called extension of parental rights and it is somehow
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misinterpreted that it is a bad solution, in fact extension of parental rights has the same
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consequence as deprivation of legal capacity, except it is the procedure that is done before a
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person reaches the age of 18 in case of Serbia, before he reaches maturity. In that way a person
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is actually prevented of reaching maturity, and that's what actually extension of parental rights
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means.
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Also different aspects of enjoyment of legal capacity is regulated through different laws, and I
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will go through this when I talk a little bit about consequences the deprivation of legal capacity
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has on people's lives in Serbia.
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Current legislation in Serbia allows for three institutes as I already mentioned one of them is
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extension of parental rights, but it actually allows for two options when we come to court
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procedure of deprivation of legal capacity.
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And that is total deprivation which results with plenary guardianship and that is in a situation
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when a person is incapable of normal reasoning and therefore unable to care independently for
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his or her own rights and interests. And with such procedure a person who is deprived of own
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legal capacity, totally, is equal to a younger minor, that is a person younger than 14 years of age.
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There is also an option for partial deprivation and the condition for such partial deprivation is
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that the person directly threatens his or her own rights and interests or the rights and interests of
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other persons. And in that case the person is somehow equal to an older minor, which is a
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person between 14 and 18 years of age.
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What is good about this is that for example a person can get employment, but this is only if the
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core procedure is done appropriately and if, only if there are very clear guidelines on what this
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person is actually allowed to do on his or her own and what are the restrictions that are coming
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out of the court decision.
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So some of the consequences, I said the real issue of legal capacity is spread out through many
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laws in Serbia that are in different areas of ones life and among those, a person is unable to
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choose a place of residence, unable to exercise parental rights, that means that children are taken
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away from people who are deprived of their legal capacity, they can not enter into contracts, gain
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citizenship, they can not even volunteer.
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We very recently had a law on volunteering which explicitly fore bids volunteering, even for
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persons who are partially deprived of their legal capacity, so you can see really how long and
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how vast the impact of deprivation of legal capacity is on people's life in Serbia.
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What we did he, because we saw that the practice definitely wasn't good, because we were
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approached by many people, we knew about abuses that were going on, so we really wanted to
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see what is going on and we wanted to have black and white, we wanted to have an evidence,
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something, which deprivation of legal capacity is really wrong.
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So what we did, we ran a survey, we actually collected over 1,000 court decisions that we
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analysed because we wanted to see what were the basis, what were the arguments and what was
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the impact on persons lives when they were -- when a procedure for legal capacity deprivation
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was brought against them.
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So what we presumed from our experience and also from experience of people who were
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personally affected by this issue is that we presumed that although the law allows for partial
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deprivation, partial deprivation is actually very rare, that giving people's legal capacity back is
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especially rare, that procedure is not fully respected and that deprivation of legal capacity is
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simply based on diagnosis, and that's completely discriminatory.
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We used the request for information for public interest which is a law that allows civil society
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and all other actors to ask for information from the State, which we believe is of public interest,
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and we received decisions from 34 basic courts and 26 Supreme Courts. And we defined certain
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parameters that we did analysis upon.
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So what we were actually looking for is what were the reasons, what was the justification, what
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was the history of a person, whether the person was institutionalised or not, whether the court
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ever saw a person that they decided, on which legal capacity they decided on.
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So here are some of the results. Main causes of deprivation were actually just having a
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disability, so in 45% of all cases the reason for deprivation of legal capacity was simply that the
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person has intellectual disabilities, in 31% the reason was psychosocial disability, in 4% the
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reason was physical disability, we mentioned something yesterday that it's not only persons with
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intellectual and psychosocial, persons with cognitive disabilities that suffer because of this
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procedure, but stealthy we see that simply because of having a physical disability persons were
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deprived of legal capacity, the rest were, like they say combined disabilities, or multiple
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disabilities that I didn't list here.
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So in 99% of cases the type of disability was specifically stated, usually in the form of medical
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diagnosis. What is also interesting and it tells us about very close link between segregation,
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institutionalisation and deprivation of legal capacity, that more than half, which is 57% of people
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de prepared of their legal capacity have been institutionalised, either during the procedure or
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some time in their lifetime. Out of those persons 4% of them pre-involuntarily hospitalised.
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What was also very striking is that in almost 90% of cases, I can freely say a court never saw the
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person that they decided, on whose life they decided on. So there was no mention of a person
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being presented in court, there is no mention of a person being heard at court. In 84% there was
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no visual contact, in 87% there was no even mention that the person was able to give all
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statement to the court.
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The large percentage of cases in which a temporary guardian or representative never objected to
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a proposal for capacity deprivation demonstrates ineffectiveness of legal representations. This
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was very obvious because when there were very few cases where a person actually had a legal
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representative, it resulted either in not depriving that person of legal capacity or it resulted with
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partial guardianship, which tells us that it's really important to provide people with legal
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representation which is why we are very much pushing now for a free legal aid law in Serbia so
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that people who are under such procedure can at least have an independent legal representative
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in court.
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This ineffectiveness may also be related to the fact that in almost 28% of cases a guardian ship
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authority, which is a centre for social work, appeared both as initiator of the procedure that the
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person should be de prepared of legal capacity and temporary guardian, actually representative
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of that person at court. So it's a double role. And centre for social work also have double role in
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controlling and exercising the role of a guardian in many cases, almost two thirds of cases.
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What was also very obvious is that in majority of court decisions it was very stigmatising
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terminology, like Mongoloid idiot and some very offensive terms that you would never believe
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that they can not hear in 21st century and these are decisions made between 2008 and 2009 just
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to give you an idea when we have the use of such offensive terminology.
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And also there is influence of prejudice in the assessment process, where neuro psychiatrists are
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actually supposed to give an independent assessment of persons on whose legal capacity the
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court is deciding on, however very often psychiatrists dare to judge whether a person should be
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or should not be deprived of legal capacity which is not at all under their jurisdiction to decide.
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So although the law is very outdated and it really requires serious changes Serbian law allows
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for certain procedures that can actually improve the situation while we have a legal capacity
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reform, and that is improvement of court practice, and this is why we actually send many
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recommendations and are planning to work with judges, because judges have to afford much
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stronger procedural guarantees to persons against whom requests for deprivation of capacity are
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being lodged. So there are definitely mechanisms that can prevent such vast abuse of rights of
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persons who are being deprived of their legal capacity.
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And they can also limit the deprivation of legal capacity to the least possible extent so they can
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use partial deprivation with very specific details what are the exact things that a person needs
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support for and what are the things that a person can completely decide on their own.
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So yes we covered courts, however practice of centres for social work hasn't been researched yet.
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This is also vast, vast space for abuses. Very often it relates to property of persons and this is
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definitely something we should focus on in our future work.
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Especially because the recent facts show that in 2011 the number of persons deprived of their
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legal capacity increased for one third comparing to 2010. So while we were actually counting in
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hundreds people each year deprived of their legal capacity, we have thousands of people
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deprived of their legal capacity in 2011.
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So the question was what actually led to such practice, and this is where I am coming back to
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torture prevention. So in 2009 we had a visit by European committee for prevention of torture,
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and in their report they said that there are many people in institutions whose status wasn't
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regulated, so because these people were there, considered to be there voluntarily but there was
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no permission signed by them and they also didn't have appointed guardian, so how come that
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they are being kept in these institutions against their will?
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So the intention of the European committee was to help people, but what actually was the result,
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that the Ministry sent an order to centre for social work to regulate the status of people in
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institutions, and what we had -- we had massive deprivation of legal capacity of people who are
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detained in institutions. We had 40 people per day being deprived of their legal capacity, just
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like that. This is upon the evidence or testimonies of staff that were present during these
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procedures.
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So we should be really careful when we are using this argument of torture prevention, how we
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formulate our arguments, because they can really lead to serious misinterpretations on behalf of
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the State.
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And also what was interesting in 2011 and this was for the State report, that there was not a
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single case of partial deprivation among all of these cases. And I haven't mentioned that in the
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research we did there was only 0.5% of restoration of legal capacity among all decisions that we
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were able to see and also that only 5% of all deprivations were partial deprivations.
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So there were recent attempts for reform, both initiated by the government and the civil society
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sector, so the government came with the draft amendment to the law on Non-contentious
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Proceedings Act. And this was stopped because the working group split at the very beginning,
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so you had one group of people within the working group who said okay these are the changes
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we need to make, these were very superficial changes, but nonetheless they attempted
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something. But the other part of the group said no, we have perfect law, nobody complains.
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Imagine!
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So then we had this attempt by coalition against discrimination, which came out with a model
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law and procedures for limitations and protection of certain rights and liberties. I must say that
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this group of organisations never consulted a single person with cognitive or any other disability
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in this process and what's very interesting, that the subject of that model law is to regulate basic
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principles, reasons and procedures of adopting and abandoning decision on limitation of rights
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and liberties of persons with congenital or gained physical, sensory, intellectual or emotional
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disability, who has reduced capacity of making, understanding or memorising own decisions,
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that is capacity of communication with others.
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So is there a problem with this model law, what do you think? I mean they have great intention.
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They wanted to help people who had some kind of disability, so what is the problem here, what
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do you think?
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So what's very interesting to me is that actually coalition against discrimination is coming up
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with a very discriminatory law, because it allows people to be deprived or actually have rights
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limited simply because they have a certain disability, due to which they can not reason well, or
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that they can not communicate their wishes. So yes, this is very interesting and we'll see how
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this will develop.
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So what we are planning to do and you can see that we are really facing the different challenges,
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both in terms of relation with the government who thinks that the situation is perfect and it
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shouldn't be changed, and also with civil society that thinks it's doing in the best interests of
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people that they actually never consulted.
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So on one hand we want to make sure that the court practice is improved and on the other hand
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we want to make sure that we achieve very recent change in legislation that will allow for better
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protections for persons with disabilities in Serbia.
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So we had some activities at the national level. We continued with the monitoring of court
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practice, we are very pleased that people are approaching us more and more and asking for
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advice regarding deprivation of legal capacity, because they are very often advised by centres for
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social work and different State officials, to deprive their family members of their legal capacity,
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so they can actually gain some social benefits. And what's very interesting is that now a
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condition to institutionalise a person is to deprive that person of a legal capacity. So there is no
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law that says that, it's simply a practice that has been very problematic and that we can definitely
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fight.
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So we had series of information meetings with DPOs and parents organisations and we tried as
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much as possible to involve self advocates in all public discussions in relation to legal capacity,
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and also created a manual for persons with cognitive disabilities so that they can be more
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familiar with the issue of legal capacity and especially with the consequences that such
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procedure is bringing.
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What we are very proud of is that we were able to extend this initiative regionally, first we have
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a project that was called Balkan network for social inclusion which included organisations from
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Bosnia Herzegovina Serbia and Kosovo and I forgot sorry Czech Republic because the leading
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organisation was from Czech Republic but I was somehow focusing on the region so I'm very
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sorry that I missed Czech Republic here.
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So within this network we actually did the research I just told you about and findings of this
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research are in this report, practising universality of rights, which is analysis of the
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implementation of the UNCRPD in view of persons with intellectual disabilities in Serbia. But
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also we have one volume that includes also Bosnia and Kosovo in the same publication.
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And then we decided, with this research we actually identified that the issue of legal capacity
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deprivation is crosscutting across the region. So we initiated a person project which we
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implemented with our terrific colleagues from here in Galway, which we have been, who have
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been very helpful with pushing for reforms with us and we included organisations from Bosnia,
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Croatia, Ireland of course, turkey, Serbia and Kosovo again.
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So we have countries from conflict regions that we were actually able to gather around this idea
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that all persons should be recognised before the law on an equal basis with others, and we are
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very proud of being part of such partnership.
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So what we did, we managed to develop universal principles that we are all going to hold on to
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in our advocacy efforts for legal capacity reform. We had the first regional conference on legal
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capacity and community living where we tried to stress the importance and link of these two
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issues, and also in each country we created national pools of expertise and we hope to push for
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reforms and to involve as many actors as possible, as was done here in Ireland, so we are
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learning from this experience and we are really hoping to achieve results in very near future.
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You can also find person principles for legal capacity Law Reform on person website which is
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www.eu-person.com, so these are the principles that all of our organisations adopted
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With the wish to push for this reform and to have a unified voice in the whole region, especially
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because the whole region is actually aiming to access European Union, and thus we have
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additional pressure that we can put on our governments to comply with the principles and in the
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Convention and actually with Article 12.
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So thank you for your attention, I will be here for your questions.
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CHAIR: Thanks very much Dragana for that fascinating insight into what is happening in Serbia
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and what strikes me in Ireland, we tend to look to the UK and other common law jurisdictions
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when we are looking at our own Law Reform and that's in the Convention, it's worldwide Law
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Reform effort we learn so much from other jurisdictions.
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What I propose to do I have been told to keep the summer school on track this morning and
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timekeeping hasn't been great, so what I am proposing to do if you have any burning question I'll
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take a question now for Dragana, otherwise I can leave questions for all three speakers before the
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tea break, so unless there is any burning question we'll take one if you want to exercise your
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voice? I'll take two questions together then and we'll move onto the next presentation.
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SPEAKER: Good morning, it was a very informative and wonderful presentation. My question
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is during your research you of course stressed on improving of legal capacity to people with
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intellectual disabilities and psychosocial disability, what about people with multi disabilities for
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example people not only psychosocially disabled but also physically disabled? What about the
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deprivation of legal capacity of them? This is one thing.
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Second thing I want to highlight, what is in my country, it is a form of practice and in fact there
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are provisions in the laws that if it is found out after marriage that either party suffers from
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insanity, or intellectual disabilities, -- it is a ground for divorce, do you come across any such
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thing, what is the response. What happens in Serbia on that?
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CHAIR: Thank you I'll take the other question as well. Both at the same time.
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SPEAKER: Morning. I would like to ask concerning the issue of deprivation of legal capacity
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based on diagnosis, could you please elaborate more about the conditions of satisfying of
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diagnosis, for example burden of proof, evidence, how to interpret, because it's fascinating about
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the very high percentage. Thank you.
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MS MILOVANOVIC: I hope I understood well the first question was why we haven't included
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other types of disability, was that correct? I wasn't able to hear well.
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But actually we did in the survey we paid attention, I mentioned that 4% of decisions were
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actually for persons with physical disabilities. I was just indicating the reasons mentioned for
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decisions.
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Of course there are many cases and people with different kinds of disabilities approach us,
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because they are told that it's easier if they have a visual impairment for physical disability or
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cognitive disability, it's easier to have a guardian, and then guardian can do whatever they need
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to, they don't have to bother with all the administration and everything, so it's somehow
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presented to them as it's easier to be deprived of legal capacity without going into actually
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consequences that people suffer.
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You were also asking whether we had a case of divorce that the cause for such procedure was
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that a person has some kind of disability, was that correct?
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SPEAKER: Yeah what happens if, after the marriage it is found out that either, one of the
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spouses suffers from mental or intellectual disabilities, and then the other party wants a divorce,
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in India it is allowed.
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MS MILOVANOVIC: It is allowed yes, it's probably considered as justified reason. Yes. I
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agree. And also, I'm sorry the third question was -- could you please repeat it sorry.
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SPEAKER: Yes, in the issue of deprivation of legal capacity based on diagnosis. I'd like to
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understand more because it's a very high percentage, especially in the certifying of diagnosis.
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MS MILOVANOVIC: Yes it was simply in many cases sufficient that a diagnosis was being
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stated, that a person was hospitalised for such and such reasons, that it showed certain symptoms
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and therefore should be deprived of legal capacity, and there is in almost all cases that we saw,
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that this was justification for a legal capacity deprivation, which was striking, because it's a
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discrimination, they never described what were the actions that led to such conclusion, in what
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way has a person ever endangered their own interests or interests of other people, so there was
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no mention much such situation. And it was very familiar to come up with description of a
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person, how he dresses, how he looks, whether it looks like it brings confidence, very bizarre
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descriptions that are not relevant at all for a procedure of deprivation of one's legal capacity.
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SPEAKER: And you mentioned concern to justifications, discrimination as compared to
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involuntary -- a panacea right, because if the justification of discrimination is accepted by
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science -- I'm just trying to understand the structure because your research is very -- trying to see
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the structure of the analysis, but for me I think we still have the same interpretation problems,
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right. Thank you.
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MS MILOVANOVIC: Yes, what was very, actually in all court decisions and all descriptions
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and justifications we were able to see prejudice actually that exist toward people with cognitive
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disabilities, it was so coloured with prejudice of pre-judgments about their abilities, so it's really
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striking to see such many cases where prejudice were actually bounded in deciding on someone's
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capacity.
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CHAIR: Thank you very much Dragana there will be room for questions at tea and coffee as
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well, you can continue the discussions after we're finished the formal sessions.
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Our next formal session is Lee-Ann Basser a Professor at La Trobe University, she is coming off
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sabbatical where she was in Tel Aviv. She has a vast experience of working with NGOs and
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engaging in disability research and she is one of the leading books on disability studies and
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disability rights and disability law which she edited in 2011 with Martin Nyeov what she is
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going to do is give us a very interesting presentation on the challenges that the CRPD and the
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cases it is generating in Australia. I'll ask her to start her presentation thank you.
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PROF BASSER: Okay it's quite sobering to speak about a jurisdiction like Australia and the
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challenges that we face having just heard about the challenges in Serbia.
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I'm going to talk quite broadly about legal capacity in Australia, you are all aware that we signed
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and ratified the Convention quite some time ago, together with the optional protocol.
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When we signed the Convention we made three interpretive declarations and there was one on
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legal capacity that I just want to flag here, because as you will be able to see this interpretive
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declaration is somewhat at odds with the interpretation of Article 12.4 that came forward
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yesterday.
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Where he said that Australia recognises that persons with disability enjoy legal capacity on an
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equal basis with others in all aspects of life. So far so good. But we declared that. Australia
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declares that its understanding that the Convention allows for fully supported or substituted
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decision-making arrangements, which provide for decisions to be made on behalf of a person,
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only where such arrangements are necessary, as a last resort and subject to safeguards.
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So as I say it's a challenging interpretation in terms of the discussion yesterday and I'll come
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back to that shortly.
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So when we talk about legal capacity our common law assumes that everybody over the age of
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18 has capacity and that certain children will have capacity as well once they reach a particular
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level of maturity.
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It's also as we heard, in Australia, like in England it's not an all or nothing concept, the concept
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of legal capacity. But is presumed to have legal capacity in all areas of life, but when capacity is
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challenged it isn't just that you'll have it or you don't, you may have it for some area and not for
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others and in that regard Lucy's paper yesterday certainly raises a lot of questions in relation to
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the direction that we're heading with Law Reform in the area.
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Legal capacity it goes without saying, arises in many different areas of life and of law and while
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I'm going to talk about guardianship law in Australia, I wanted to just flag some of those areas,
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so contract law or tort law, marriage law, the level of capacity that is required in relation to
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contract law is different and somewhat higher than in relation to marriage law where capacity is
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challenged. Marriage law has quite a low threshold, you just really have to understand what a
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marriage is in a broad context.
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It's relevant in the conduct of a defence of legal proceedings, and when giving evidence in legal
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proceedings around the issue of who can give evidence, how evidence is given and the weight to
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be given to evidence. And the way I've structured this talk is to talk broadly about concepts, to
6
give you a briefing on current guardianship law and what would appear, the trend in reform, and
7
then to look with you at some case studies, and one of the case studies relates to actually the last
8
three, well not marriage law but family law and the ability of a person to, who has not been
9
found -- who isn't under any kind of formal guardianship to conduct legal proceedings or defend
10
them in a particular case study, and to give evidence and what happens with that evidence.
11
12
Mental health law in Australia has been undergoing reforms, at least there have been a number
13
of inquiries and reports, in my state, Victoria, quite some time ago there was a very big review,
14
even an exposé of a draft of legislation circulated, then we had a change of government. The
15
current state government has flagged broad principles, including supported decision-making
16
within a new Mental Health Act but we haven't yet seen the draft and having seen some of the
17
other principles apart from supported decision-making, I'm not particularly optimistic about the
18
way in which the legislation will comply with Article 12 or many other articles in the
19
Convention, but I'm not going to say anything more about mental health today.
20
21
Then we have guardianship laws. Now I can stand here 30 years later nearly, 25 years after -- no
22
28 years, anyway -- but 1986, in the mid 1980s Terry Carney, a Professor at Sydney university
23
then a Senior Lecturer, conducted a broad sweeping review of guardianship laws and introduced
24
what at the time were, what made the recommendations that lead to the introduction of a very
25
progressive guardianship Act for the time.
26
27
One which saw plenary guardianship, full guardianship as something which should only be
28
introduced as a last resort, that set in place mechanisms whereby people retained their capacity
29
as much as possible, perhaps you had limited guardianship where an order was made in relation
30
to a specific issue, and all of these, any time a person's capacity was challenged in the way of
31
guardianship it went to a specialist tribunal that was multidisciplinary, the person with a
32
disability was almost always present and able to participate in the proceedings.
33
34
I did a research project about three years after the Guardianship Board was established and it was
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very impressive to see the way in which the proceedings were held, investigated, someone from
2
the tribunal would visit the person with the disability and really look into the issues, it wasn't just
3
a case of medical practitioner and a family member coming along and saying this person can't
4
make decisions.
5
6
However over time the processes have changed, the law, the CRPD has been passed, there has
7
been a lot of calls for review, and in light of our obligations under Article 12, in light of the
8
passage of time and for various other reasons the Victoria Law Reform Commission was asked
9
to review guardianship law and make recommendations for change.
10
11
But before I get to those recommendations for change I want to look at the current mechanisms
12
that exist, I put supportive not supporting or supported because these are really all forms of or
13
many are forms of substitute decision-making, but the idea behind them is to engage the person
14
with a disability.
15
16
So we have a broad range of instruments that allow people who are legally competent to enter
17
into advanced directives, to make living wills, to appoint someone, their own decision maker, a
18
vast array of instruments for this.
19
20
We also have a recognition of informal decision-making in relation to every day issues where the
21
presumption of capacity just stands whatever the situation, and a range of circumstances in
22
which, I've put it further down but I'll say it here, a person who is regarded as a person
23
responsible can make decisions actually on behalf of a person with a disability.
24
25
In criminal proceedings in Victoria we have something called independent third persons who are
26
required to be present when a person with an intellectual disability or some other cognitive
27
impairment is being investigated in relation to a criminal matter. These are not really -- these
28
people are there to support the person with a disability to the extent of making sure they
29
understand what they are being asked, but they understand their basic rights and to help the
30
police to some extent by acting as a translator and directing the police a little in the kind of
31
questions that are appropriate to ask a person with an intellectual disability or cognitive
32
impairment. And other states and other places have similar mechanisms in those criminal
33
investigations.
34
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In relation to defending or conducting legal proceedings, a person who doesn't have a guardian
2
may come before the court and find the court appointing a litigation guardian, the judge may
3
make a determination, not necessarily on a lot of evidence, but on their impression of what's
4
going on, that a litigation guardian should be appointed in a particular case. In which case the
5
person with a disability loses control of the case. I'm not saying the litigation guardians will
6
deliberately act against a person with a disability but their role is to speak for them and make
7
decisions in the running of the case on behalf of the person with a disability. So it's a form of
8
substitution although it's seen as supportive decision-making.
9
10
Then we have guardianship law and as I said the current guardianship law has a range of orders
11
that can be made or a range of mechanisms, all of which are substitute decision-making rather
12
than supported decision-making at the moment. The difference between a plenary guardianship
13
and administrator is that administrators look after financial affairs, in the 80s that was a big
14
innovation to separate out personal lifestyle matters from financial matters and have a separate
15
person deal with that.
16
17
So when do guardianship laws apply, when can an order be made by the relevant tribunal for
18
guardianship? First of all a person -- what I'm saying is broad, each state has, and territory has
19
different laws although they are similar and I based what I'm saying on Victoria legislation.
20
21
The person has to have a decision-making disability, a physical disability is not a ground for
22
making a guardianship order or a sensory disability is not a ground. A person has to have a
23
decision-making disability and they have to have a need for a guardian.
24
25
The guardianship order itself has to be limited in scope to what is necessary to meet the need
26
that's identified and then there are three guiding principles for making guardianship orders.
27
28
The first is the wishes of the person, if they are known, if they can be known what does that
29
person want. The second is that the order has to be the least restrictive of the person's legal
30
capacity, and our dear friend best interests, it must be in the best interests of the person, of the
31
particular person, not more convenient for somebody else.
32
33
So that's a broad picture of guardianship law as it stands, just as we heard yesterday the practice
34
often guardianship orders are not, decisions on a day-to-day basis are just made in consultation
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with the person or by the person, whether or not they have a guardianship order. One of the
2
problems we do run into and I speak from personal experience here, is that in a world where
3
people are very concerned about legal liability and they want to know that they have a legal
4
consent, or they are concerned about privacy laws and their liability on privacy laws, you find a
5
range of government departments asking for guardianship order where a person with a disability
6
is unable to speak and ask for themselves for a birth certificate or to make an application for a
7
benefit, even though the person, the law says only to - the tribunal will only appoint a guardian
8
in restricted circumstances you find government departments asking for evidence that there is a
9
guardianship order. This can be got around, but there are kind of bureaucratic processes pushing
10
up against the practice of the law.
11
12
The road to reform. As Rosemarie said yesterday when we signed the CRPD that opened the
13
way for actually many reforms including amendments finally to be passed to our Disability
14
Discrimination Act, clarifying the position around the right to reasonable adjustment amongst
15
other things, and I'm not going to say any more about that today.
16
17
There have been a number of piloting of supported decision-making practices, for example the
18
south Australia office of the public advocate has just completed a pilot, which is seen to be very
19
successful, around supported decision-making. And for example in my state, the department of
20
human services is now, has supported decision-making guidelines and is encouraging that
21
practice through the different services of the department but hasn't been evaluated yet and there
22
isn't much evidence around about it. There is one in new south Wales as well.
23
24
There has also been a large number of Law Reform inquiries around the country and I was very
25
excited when this started happening, I'm just a little bit concerned that the inquiries that have not
26
yet translated into legislation. So for example the example of the mental health laws in Victoria,
27
there has been a number of inquiries into the situation of people with disabilities in the criminal
28
justice system, in new south Wales they've had a report but as far as I can find out no action. In
29
Victoria we had this very bizarre, I gave evidence to it, parliamentary inquiry, parliamentary
30
Law Reform committee inquiry, which had very broad terms of reference because a number of
31
the NGOs particularly women with disabilities Victoria had been very vocal in lobbying for it,
32
but it came out with a report which doesn't really say anything, although many stakeholders took
33
the time to give evidence.
34
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We have the guardianship report that I have just mentioned. But only last week I think the
2
federal Attorney General mark Dreyfus announced a reference to the Australian Law Reform
3
Commission on legal barriers for people with disabilities. Now that's an exciting...
4
MS KAYESS: Oh yeah you've got the Australian Human Rights Commission there.
5
PROF BASSER: Sorry, it's meant to be Australian Law Reform Commission, the Australian
6
Human Rights Commission collected a lot of stories of people's experience of the human rights
7
and actually if you're interested there are a series of videos, some of which.
8
MS KAYESS: I've got the DVDs here.
9
PROF BASSER: Some of which are really compelling and one of which was about an
10
indigenous man who had cognitive disabilities, who was accused of sexual offences against
11
some indigenous girls, was found not to have the capacity to stand trial, was imprisoned for ten
12
years before someone was actually able to clear his name, bring new evidence and clear his
13
name. He was released, that's good, but because he had been found not fit to stand trial clearing
14
his name hasn't been enough. The guy is living in the community but confined to his home. He
15
is not allowed out of the line of sight of the carer who is, person who is charged with his care.
16
17
So even though he was cleared, he is still subject to rights abuses, and I think this story has been
18
quite influential in this referral.
19
20
This is unusual, a little bit part of the nothing about us without us, but I think also partly political
21
expediency, the reference has been made at no time Law Reform Commission but in too broad
22
terms and then there is a call for members of the public to make submissions about the breath of
23
the inquiry and the nature of it, but that's really all I can tell you about that.
24
MS KAYESS: I would just say that I was incredibly disappointed that the link to CRPD isn't
25
stronger in the terms of reference and it will be interesting to see is a call for submissions on at
26
no time Terms of Reference, it will be interesting to see to what extent they respond to the call
27
for it to be linked more strongly back to CRPD.
28
PROF BASSER: I was very disappointed about that, it just seems they were in a big hurry to
29
make the announcement and didn't actually -- you have to you understand we are having an
30
election in September and it looks like we'll have a change of government when we get that
31
election, so I think that this current government is supportive of disability issues and they wanted
32
to make sure that this referral was well under way before anything happened.
33
34
So I want to at least talk about one of the case studies so I'm just going to quickly go through the
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next couple of slides. I think you will be aware of Bach and Kersner's three-tiered system of
2
supported decision-making, the first level being where there is legally independent status where
3
no support is required. A second level where support is required and a third level that they talk
4
about facilitated decision-making, and this model has really been incorporated in the supported
5
decision-making that's contained in the recommendations for reform by the Law Reform
6
Commission.
7
8
I'm not going to go through them all I've given you the chapter from the commission's report and
9
they are in the slides, but there is a range of different supports where the decision-making still
10
remains with the person with the disability. There is this level of a supporter, a level of
11
co-decision maker that is appointed by the tribunal where the decision is to be made between the
12
person with the disability and the co-decision maker, and there are similar self appointed
13
arrangements to the ones we had before, but all these arrangements have to be made in writing
14
and registered so that there will be a way of proving that the person -- an easy way of proving the
15
agreements.
16
17
But the recommended reformed retain supported decision-making. And very worryingly,
18
particularly in light of what Lucy had to say yesterday, instead of them -- sorry, worrying to me
19
not exactly in light of what Lucy said, while the substituted decision maker is to be appointed by
20
the tribunal the capacity assessment that predates the tribunal hearing is to be made by registered
21
capacity assessors, if you want to read more about that you can in the report.
22
23
I'm going to leave to you read these things because I wanted to at least come to this scenario and
24
get some feedback from you, get you thinking about Article 12 and also this particular story
25
raises the right to home and family life.
26
27
This is a real case, it was reported in the Sydney morning herald at the end of last year. Rebecca
28
is a woman with mild intellectual disability who has an 8-year-old daughter. By all accounts she
29
is a competent and caring parent. She receives some support in her parenting from the
30
department of human services, they are very well aware of her, but her parenting ability is
31
challenged through the family law.
32
33
So the parents of her estranged partner brought an action in the family court for parenting orders
34
and the case, when it came to be heard in the federal magistrate's court, a litigation guardian was
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appointed to act on her behalf. Now the litigation guardian was sympathetic to her, there was a
2
trial, she gave evidence, she was able to with stand as the report says three hours of
3
cross-examination from the other side of the she had three experts who were very familiar with
4
her and her situation testifying to the quality of her parenting ability.
5
6
Now the rest of us who need to go into the family court, sure there is going to be some
7
assessment of the quality of our care giving and the court can appoint an expert to give some
8
evidence on that but you don't usually have three experts. But they all agreed that she is a
9
competent and caring parent. But she kind of fell foul of the test for making orders, which is
10
what is in the best interests of the child?
11
12
And I think I want to open it up to you before I tell you what, although I've kind of flagged it,
13
what the outcome of the case is, to think about what Article 12 has to say about this case and
14
what it says about the right to family life as well.
15
DR SERIES: Sorry I really enjoyed your talk, as I'm sure you probably know this is very similar
16
it a case from the UK called RP versus UK, a woman called RP had an intellectual disability and
17
a child and proceedings were initiate to remove the child from her care. RP's solicitor felt she
18
lacked capacity to conduct proceedings so a litigation in the guardian in the UK a litigation
19
friend was appoint to run proceedings for her and the litigation friend, even though RP
20
desperately wanted to keep her child, felt it was in her best interests not to contest the removal of
21
the child from her care. So there was never a case, which heard the evidence on her parenting
22
abilities because the litigation guardian dropped her case.
23
24
This went to the European Court of Human Rights, Article 12 was argued and astonishingly the
25
European Court of Human Rights held that because of Article 12 it was necessary for a litigation
26
friend to represent her best interests. That no violation had occurred. So I hope that didn't
27
happen but that's what happened.
28
PROF BASSER: No but what's interesting to me speaking as a lawyer about this particular case,
29
one of the things, this isn't child protection proceedings, there was no case for child protection
30
proceedings, the department didn't seek to bring them. This is a parenting dispute and not
31
between the parents. But between a parent and the grandparents. I think someone else had their
32
hand up?
33
SPEAKER: Let me share a similar case which happened in India, a who was sexually assaulted,
34
molested in an institution, she became pregnant and her pregnancy came -- legally it was not
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possible to go for an abortion, and therefore authorities citing reasons, citing her incapacity to
2
nurture as a parent, they wanted to go for abortion. And the matter went to the Supreme Court
3
because first the matter went to High Court and on appeal it went to Supreme Court and in
4
Supreme Court, in both courts decided that the woman had the desire to keep the child and they
5
ordered that the help of an NGO or help of some kind of support she can raise the child.
6
7
Her evidence was recorded with the help of a doctor and her evidence was conveyed to the court.
8
I think that was the main point. But I have my open doubts about the reasoning.
9
SPEAKER: I am from Norway and I am a psychologist in the court in Norway, in this kind of
10
cases. I had a similar one and I was advising that the child should be with the mother, because
11
the grandparents are not relevant. They are going to die and their emotional support is not the
12
most important -- emotional support is most important not intellectual. So I hope that's the
13
result.
14
SPEAKER: Similar to hers, but I'm thinking while the facts say the mother has mild intellectual
15
disabilities so what does that exactly mean? What can she do in that state or what can't she?
16
17
Then two, at least there is evidence from the facts that she is a competent and caring parent. I'm
18
believing in that.
19
20
Then the principle, yes we have the best interests of the child, but that should also be married
21
with the principle of the parent having the primary duty, responsibility and right to take care of
22
their child against any other third parties.
23
24
So if I were the judge here my fears are that of course they took away the child, but if I was a
25
judge I would say let's empower her further and then we leave her to enjoy the duty and
26
responsibility to take care of her child in the spirit of Article 12 of the CRPD.
27
PROF BASSER: Thank you, I've got one minute.
28
SPEAKER: Very quickly I have done a lot of research with parents with intellectual disabilities
29
particularly with mothers, and with their young and adult children. And overwhelmingly the
30
children are better off with their parents and not being removed. Many of the children who are
31
being removed have incredible problems while the children who have stayed with their parent
32
seem to fair much better and are much happier and they who have been removed are really angry
33
about it, and often angry about injustices done to their mothers. Your mother is your mother.
34
Nobody chooses their mother. But there is a very strong bond between children and parents.
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And it's just a really bad violation of human violation, to remove children. It's very easy to give
2
support for parents with intellectual disabilities to be good parents, there is so much international
3
research about this, I cannot understand how much the prejudice prevails.
4
PROF BASSER: Well this is a case that I'm a family lawyer by training, so if I was given this
5
brief to ready would say this is a shoe in, the mother is going to keep the child, and particularly
6
in the way that our family law works, it's not -- mum and dad are not going to win or lose if it
7
was between the parents they might have to share because that happens a lot in our system, but
8
normally grand parent are not successful in removing children, unless there is some risk to the
9
child.
10
11
In this case the judge didn't get to make the decision. It was actually in the end the litigation
12
guardian and the grand parent made the decision and by consent the mother lost the daughter.
13
She has contact with her but she doesn't have the primary care.
14
15
An one of the reasons I raised the case was that in the end the litigation guardian who did
16
support the mother was put in a position where the role of the litigation guardian and the risk to
17
the litigation guardian of being sued led to an outcome that the mother didn't agree with. So
18
there has been information in the press, a lot of discussion about it.
19
20
It was felt that because of the best interests standard and basically because of prejudice from
21
everything that we've just heard and the evidence that went to the court was to this effect, she
22
lost the child. So it's an example of, I think the dangers that this kind of protective substitute
23
decision maker legislation has.
24
25
Okay my time is up. I'm just, I'm flagging Patrick's story, you can read the edited case, I put it
26
on the web and Annie's story I put up because I loved her, this is Annie McDonald the late Annie
27
McDonald is the foundation that this particular case study, I'm happy to talk to anyone been it
28
later. So thank you very much and I will finish now, my e-mail address didn't appear in the list
29
of attendees, it wasn't because I asked for it to be withheld I've given it to you.
30
CHAIR: Thank you very much for that thought provoking presentation, we are running terribly
31
over time sorry about that, I might, like the grandparent, die for failing to keep things on track.
32
33
But our next presentation is from Elizabeth Kamundia, she is a wonderful person, she holds a
34
very special place in our heart here, she was in the inaugural class that graduated from LLM
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offered here in the centre last year and she was a recipient of the gold medal, she finished top of
2
the class and has huge experience working in Kenya within the human rights sector for the
3
Human Rights Commission and more recently with NGOs so I'll Elizabeth to come and address
4
you on legal capacity in Kenya.
5
MS KAMUNDIA: Thank you very much Charles. It's good to be back in Ireland.
6
7
So having completed the masters over here at the centre, I went back to Kenya and have been
8
working on various things to do with disability rights, particularly Article 12, which is what I'd
9
like to tell you a bit about today.
10
11
So a bit of background, Kenya ratified the CRPD in 2008 and since I will be talking about Kenya
12
a bit let me say a few brief facts, population of about 40 million people, human development
13
index rating of 145 out of 187 countries so that gives you a snapshot of the country and then so
14
despite having ratified the CRPD in 2008 there has been continuing denial of legal capacity for
15
persons with disabilities in Kenya, as we'll see as we go along.
16
17
Mostly it's that even court decisions that have come post 2008 have not conceded the CRPD at
18
all, even when making determinations of guardianship, so there is that continuing denial, so as a
19
result the Kenya national commission on human rights, with the support of open society
20
initiative for eastern Africa, have been leading efforts to advance Article 12 in the country.
21
22
So the research has been -- let me tell you a bit about the research that I have been doing, so it's
23
run between April to last week actually is when we had the stakeholders meeting for introducing
24
the briefing paper. So basically I was -- the Terms of Reference for the research was to
25
document a briefing paper detailing the situation of the right to legal capacity in Kenya, best
26
practices from other jurisdictions and recommendations on how the right to exercise legal
27
capacity can be enhanced in Kenya. So the purpose of the report then is to lay the foundation for
28
a legislative framework for legal capacity.
29
30
So initially as it was envisaged it was a desk-based research only. Then as I got reading I
31
realised a lot of writings were from the perspectives of developed countries and it feels in a way
32
we are all working on a puzzle and each region of the world has different pieces to the puzzle
33
and we are all bringing it together to figure out what is Article 12 actually means in practice. So
34
I thought that it would be important to speak with people with disabilities in the country and hear
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what Article 12 means for them.
2
3
So I carried out interviews with 7 disabled people's organisations, one of them is for people who
4
are deaf blind, two for people with psychosocial disabilities two for people with intellectual
5
disabilities, one a women's rights across disability organisation and one the umbrella body for all
6
DPOs in the country.
7
8
Then I also carried out interviews with three people with disabilities and I had a focus group
9
discussion with 16 people with psychosocial disabilities, just to get a bit more in depth
10
understanding of psychosocial disabilities in relation to Article 12 of the CRPD.
11
12
So another reason really why the interviews were necessary was because in the State report our
13
State report is right now before the CRPD committee and in the State report a big chunk of it is
14
on Article 12.5, the one about property and financial control, and so this also is something that
15
hasn't been written that much about yet, it felt like it's a really significant part of legal capacity in
16
our context. So I start of wanted to probe that as well.
17
18
So this is, I need to emphasise that the study at this point was very exploratory in nature, what
19
we were seeking to do is give a snapshot to government to prove that there is need to do work in
20
this area and to make a case for a legislative framework for legal capacity.
21
22
So having said that, then we are going to look at the policy and legislative framework on legal
23
capacity in Kenya and then talk a bit about the Kenyan situation with regard to Article 12 of the
24
CRPD. I'll look at a few dilemmas on implementing the right to legal capacity in Kenya and I'll
25
take us through a few of the recommendations that the briefing paper made.
26
27
So with regard to the policy and legislative framework on legal capacity in Kenya, we have laws
28
that establish guardianship and then other laws that have an impact on legal capacity without
29
necessarily establishing guardianship. But I need to say at this point that in Kenya yes we have
30
the laws that touch on guardianship, but a lot of things are done informally, a lot of things are
31
done outside the law, and this was one of the challenges really when doing this, we will come to
32
that a bit more, but I just wanted to alert you to that fact.
33
34
So we have the Mental Health Act that provides for full or partial guardianship. So the Act
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provides for an appointment of manager for property in the event that a person a unable to
2
manage their affairs in the language of the Act, or a guardian for the person, and so the
3
interesting thing about the Act is really it gives credence to that argument that guardianship laws
4
are more about property than about people, because if you look at that Act the bulk of it really is
5
about property. How the manager should return accounts, how the manager should be removed
6
if he mismanages the property, nothing is said about what the guardian is supposed to do or not
7
suppose to do. So it's very interesting that way and we'll talk a bit more about it.
8
9
Then we have the civil procedure code that basically lays down the procedure for deprivation of
10
legal capacity as well as providing for the appointment of a guardian in circumstances in which
11
someone with a disability is bringing a case to court, mostly someone in the language of the Act,
12
someone of unsound mind, but also in other provisions more general, just a person with a
13
disability, so there is that broader possibility of guardianship being applied beyond people with
14
cognitive disabilities.
15
16
Then we have the Children's Act which provides for the extension of guardianship orders for a
17
child with a disability upon becoming an adult.
18
19
Then we have laws that touch on legal capacity, but do not establish guardianship. So the first
20
one is the constitution, which provides that if you are a person of unsound mind you are not
21
allowed to vote and you are not allowed to be entered on the register of voters. And then we
22
have the Matrimonial Causes Act, it was interesting when Sanjay raised the issue of divorce,
23
because the Matrimonial Causes Act provides that being subject to recurrent fits of insanity or
24
epilepsy in the language of the Act again is a ground for divorce.
25
26
And then we have the Traffic Act, which provides that a person should, will not be given a
27
licence if they are a danger to the public. But how this has been interpreted is that deaf people
28
are by and large not given licences because they are presumed to be a danger to the public as far
29
as driving goes.
30
31
Then we have the Sexual Offences Act which is on a positive note, it provides for the use of
32
intermediaries, in cases where a person with a mental disability, again that's the language of the
33
Act, has been a victim of a sexual offence and is in court. So the intermediary may be a parent, a
34
psychologist who is allowed to give evidence on behalf of the person or to support the person in
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giving evidence to court. However, a conviction will not be reached on the uncorroborated
2
evidence of an intermediary so there is that aspect of it as well.
25
3
4
We have a Persons with Disabilities Act as well, but it does not mention legal capacity at all.
5
6
So moving on to the Kenyan situation with regard to Article 12. This really I need to say that the
7
bulk of legal capacity happens here, in the practical situation, not so much in the laws that I have
8
talked about. So the laws are there, but by and large when I did the interviews the respondents
9
were very clear that they did not know anyone who was under formal guardianship. And it's a
10
good thing because one of the core people that I interviewed is actually here, heading one of our
11
organisations, the user movement in Kenya, he is called Michael, so in addition to me, if you
12
would like to have discussions about that, he will be a good person to speak with.
13
14
But yes, so guardianship in Kenya is not common, the reasons for this range from the fact that
15
court processes are expensive, that we have a tendency to address issues informally. Now this is
16
across the board. I was told, I heard from one of the participants that look I have raised about
17
three of my brothers, my late brother's children, I have never gone to be appointed their formal
18
guardian. It just doesn't happen. Even land disputes for the most part people don't take them to
19
court, for the most part people sit down among families and try to discuss them, it's only when it
20
becomes very extreme that then people go to court. So this happens across the board.
21
22
So at a point I wondered really in this case then is legal capacity relevant for us? Because
23
clearly the laws are there, but as far as they are being applied to deny people of legal capacity
24
that's not really happening. But then at least not to a really grand scale, but of course there is
25
merit in reforming the law, but really the problem with legal capacity in our context is not
26
guardianship.
27
28
So I was looking at it and thinking should I just return this paper to the commission and say look
29
we don't have a problem with Article 12 and that Kenya is before the CRPD committee and say
30
we don't have a problem, we don't have a widespread guardianship system. But then I thought
31
wait a minute what is Article 12 really about, that's when I remembered Prof Quinn going on
32
about personhood and voice and people being able to make their open decisions and to be the
33
determining voice in their lives and to have authority over their lives and not to have their lives
34
dominated by others.
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1
2
And when I took that approach then, the issue then became, do people with disabilities in Kenya
3
live lives of their own choosing, even if we do not have guardianship? Do they live lives of their
4
own choosing? Are they the authority in their own lives? And the answer was really no.
5
6
So then the research had to go into that, into what are the reasons why people with disabilities in
7
Kenya are not making their open decisions. So then that's when the shift occurred. So those are
8
the other reasons, the lack of awareness. Again I had to explain guardianship a lot, I would ask
9
do you know anyone under guardianship the answer would be what's guardianship? This is with
10
disability people's organisations so that just tells you.
11
12
So what then people said we have informal guardianship I would say tell me about that and the
13
participants said look, if a decision as to whether someone would have an ECT treatment for
14
instance arose in a country such as Israel or a country that has a strong guardian ship system the
15
guardian will sign, will give concept for the person if a guardian had been appointed in our
16
context it doesn't even arise for the doctor to ask are you the guardian, the family that brings a
17
person signs the form quickly and the ECT gets done unfortunately. That's how it works on the
18
ground.
19
20
Then with regard to people who are deaf/blind I asked how does legal capacity affect you? And
21
the answer was that if a family is thinking of -- in the event of inheritance of land what happens
22
is that the person who is deaf blind will not be left the land in their open name, it will be left in
23
their brother, to hold on behalf of the person who is deaf/blind, because the assumption is that
24
they will not cultivate the land themselves. So there is this informal system in which you are
25
deprived the authority to make decisions about your life, but it's just not done in court, that's
26
pretty much what the situation is in Kenya.
27
28
So let's go a bit into detail about what making decisions in the Kenyan context is like. So we
29
look at the factors that affect the right to legal capacity for persons with disabilities in Kenya. So
30
the first thing I came across is that we are still very much in the charity model of disability and
31
that the negative societal attitude towards people with disabilities are still very predominant.
32
One of the things I discovered was that people with intellectual disabilities do not, are not
33
registered at birth for the most part.
34
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1
So subsequently they find it very difficult to get documents of identity, which you need to
2
transact in the world. So it's not that there is a law in place that says we do not register people
3
with intellectual disabilities, it is that families just don't because of an attitude, like in some
4
countries actually it's the attitude that a parents will say I have four children and one child with a
5
disability. So not counting that as one of the children. So it's that in depth kind of negative
6
societal attitudes.
7
8
And the affect of this is really big. In Kenya even to get into a lot of public buildings within the
9
town you need an ID, you sign in and leave your ID for security reasons increasingly. So
10
without an identity document, the way in which you can engage with your environment is so
11
limited so that's one of the barriers.
12
13
Then persons with disabilities live with their families in a context of limited State support. We'll
14
go a bit more into this, but for the most part people with disabilities are not living independently
15
in the community; they are living with their families. Let's look at that a bit further along.
16
17
So the context is one of poverty as well, so that has implications on decision-making for
18
everybody in the country and this is one of the core dilemmas where when people, when my
19
friends ask me what I'm doing, I say I'm doing work on how people with disabilities make
20
decisions and so I go a bit more, like financial decisions and they say wait a minute, even I don't
21
make those financial decisions because look I'm still living at home with my parents, so however
22
old I am, it's because I can't afford to move out, so how do you really make this argument to
23
government about autonomy when the majority of the people in the country are living -- so this
24
is one of the limits I think Jerome was talking about, about on an equal basis with others, when
25
the others are not really that far ahead anyway. So that's been part of the problem in our context.
26
27
So then inaccessibility of the environment, this especially came up with regard to people who are
28
blind making financial decisions. Sanjay mentioned the other day that he had a problem
29
accessing a credit card, it's the same. I heard that across the board in Kenya among people that
30
are blind. They say banks have a fairly patronising attitude towards client who is are blind, they
31
say when they apply for ATM cards on two occasions I heard that I had to threaten to sue for me
32
to get an ATM cards because the banks have not constructed the ATM in an accessible way, so
33
control of financial decisions is taken away because of an inaccessible environment.
34
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1
And then there is limited State provision and I'll go into a bit more detail now. Imagine a
2
situation in which there was no disability allowance. No mobility allowance, and you're
3
probably unemployed. So in that context then the kind of decisions you can make, again there is
4
a big impact there. I say limited because I need to give credit where it's due, we have recently
5
passed a Social Assistance Act that provides for the beginnings of making at least of the State
6
giving some money to people who have, but the threshold is very high. Again this goes on to
7
what Anna was talking about yesterday about assessments, because it says the person has to have
8
a severe mental or physical disability. So it isn't a situation in which the supports are already
9
there. And it's a question of how much support do you need. In fact it's a situation in which
10
from the word go they are assessing if you are disabled enough to make allowance, to be able to
11
get this support.
12
13
And then lack of alternatives came up a lot and this was especially so in the realm of mental
14
healthcare. Now in Kenya we have the mental healthcare is not great at all. We have one main
15
referral hospital which again ties up to something Sylvester was saying, one main referral
16
hospital, there are a few other hospitals that deal with mental healthcare but for the large part it's
17
mainly medication.
18
19
Then psychotherapy is too expensive for the majority of people so at about 90 US dollar an hour
20
most people simply cannot afford it and there are no other alternatives. So then what that means
21
is this really -- to make a choice you are deciding between things. If there is only one thing then
22
you are really not making a decision are you, because if there is only one referral institution,
23
which is an inpatient institution or hardly anything at all, that's not too much of a choice really.
24
25
And then the other thing that came out in the focus group discussion actually was in the
26
initiatives to provide healthcare within the community abuses are still happening there as well,
27
because what I heard was that well the good thing is now we can just go to the doctor at the local
28
clinic and bring him home and then we hold the person down and inject him by force at home.
29
30
So it's yes, you are shifting the institutions, but you are bringing the same practices in the home.
31
So that's part of what was there.
32
33
And then this one on cultural considerations was a really big thing because you see Article 12
34
centralises very much the will and preference of the person. But in a setting where
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1
communalism and family and community is more valued than individual autonomy, you have a
2
tension there from the word go.
3
4
And what I'm saying is that the value that is get into the Convention are the value that is are
5
agreed upon. So say autonomy is what found its way into the Convention, but that is not to say
6
there are not other values that people hold dear and this especially came up with regard to
7
psychosocial disabilities, where the family will say look, we are concerned about the person and
8
we are acting from genuine compassion and that matters. And the person will say well I'm an
9
autonomous human being and I want to be able to make my own decisions, but now the thing is,
10
in a context where there are no halfway houses, so if the family is saying take your medication,
11
the person is saying I don't want to, the family is saying well then leave, the State is saying we
12
are hands off and the person ends up homeless on the street. Is that the option you want? Is that
13
the result you wanted when you were telling people about will and preference?
14
15
So this is not in anyway to diminish the importance of will and preference, it is to show you
16
what it's been for me going back home to try and practice the theories that I learned here in a
17
practical context in people's lives. So those are some of the difficulties in our context.
18
19
So a lot of that has concentrated with decision-making with regard to cognitive disabilities I'll
20
talk a bit more about what emerged from other people with disabilities when I asked them about
21
Article 12. How am I doing for time? Four minutes! That's little but we'll try.
22
23
Okay so women with disabilities and re productive health -- okay so across the board people
24
with disabilities other than cognitive disabilities and multiple disabilities have greater
25
decision-making leeway, that came out across the board. However women with disabilities
26
when making re productive healthcare decisions they often have those decisions made for them.
27
28
I was told that people with, women with physical disabilities when they are expectant it's written
29
in their file that they will have a caesarean section, they are not allow to carry their pregnancy to
30
term, it's determined on the basis of having a physical disability. It was also made clear that
31
forced sterilizations do happen and they happen across the board.
32
33
So this was also while I was told -- this is why the commission wanted a focus on all disabilities.
34
Because it was felt very strongly that in our context this denial of legal capacity is across
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disability really.
2
3
And then on the issue of HIV testing came up, HIV testing is a really big thing in Africa and at
4
some time back it was even a requirement like before you could get married in church, before
5
you could get married legally now not so much. But what came out if you have a disability --
6
anyone else going for a HIV test gets it done no question, but if you have a disability people who
7
carry out the tests are always very reluctant to do it because they say you are wasting our time,
8
you couldn't possibly have HIV how would that have happened? So ... you know! There is no
9
law that says they can't be tested, but it's the attitudes of people on the ground that make these so
10
difficult to access services.
11
12
Then we talked about inaccessibility of the environment. So now regard to making financial
13
decisions, inheritance of property we talked about that and then inaccessibility of financials
14
services we talked about that as well.
15
16
So making personal life decisions, what emerged was that people with disabilities other than
17
cognitive and multiple disabilities have more opportunities for social support outside the family,
18
but I was told to be very aware of the effect of stigma on marriage especially for women with
19
disabilities. What came out was that the traditional African role of a woman is to carry firewood
20
for long distances, to fetch water for long distances, to work really in a physical sense. And so
21
that if you are a woman with a disability wanting to get married both your family and the family
22
where you are intending to get married to, you will face great barriers at that point.
23
24
I heard across the board that women, that this issue of stigma for women with disabilities being
25
able to have a family life is so deep, it's very big issue.
26
27
Then there was the effect of systemic diminished expectations on employment. What I mean by
28
this is that the participants said that when they are in schools they are not in anyway told that the
29
world is wide open for them, what they are told is that they will be carpenters or cobblers or
30
tailors not that there is anything wrong with being those things, but the options for a professional
31
career are not laid out to them. And that this happens across the board in schools and this has a
32
big impact on the choices that they are able to make with regard to the further education they
33
pursue and other things like that.
34
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1
So these are some of the dilemmas but really they are just a select few, there are really many.
2
One of them is what proposals do we make for persons with disabilities who do not have
3
families to support them, given the centrality of families in people's lives and given the lack of
4
services on the other hand? So what happens to you if you have a disability and you do not have
5
a family to support you, what do we propose for that?
6
7
Then how do we ensure that the environment is made accessible and that third parties
8
accommodate? Really the question of how to ensure that the law that is there is actually
9
implemented is a big, big problem.
10
11
And then how to ensure the centrality of will and preferences in a community setting.
12
13
Then we made a few recommendations, sorry Charles! I try and speed this up. One of the
14
recommendations was that it's important to develop a legislative framework on legal capacity but
15
having said this, in the short-term the idea is to include the right to legal capacity in ongoing
16
reforms like the Mental Health Act is under review and the Persons with Disabilities Act. And
17
then to repeal legislation that allows substitute decision-making, let's deal with the laws because
18
they are there, because it's important to deal with them as well, as we go into the
19
recommendation that is are going into them more addressing the practical situation, then avail of
20
the official statistic on the people however many or few there might be under guardianship.
21
22
The importance of implementing the Convention comprehensively really came up, all these
23
things, independent living, the right to education, right to employment, how interrelated they are
24
really and how a comprehensive implementation of all of them has a positive effect on all the
25
rest of the articles, and particularly on Article 12.
26
27
Then the need to create awareness on the import of Article 12, this is just so important because
28
as you can see in the context the problem is on the ground rather than formal processes. So this
29
is just the most important of them all, one of the most important of them all and capacity
30
building for actors such as judges, magistrates and all the rest of them.
31
32
Then the need to scale up social protection for persons with disabilities, because at least this will
33
increase a bit of leeway to make decisions that at least if the social protection, it makes things
34
much easier for families.
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1
2
Then just a provision of respite care services. One of the things that comes up a lot in Kenya are
3
stories of people with disabilities being tied up or being locked up in their homes and the first,
4
the initial response is why would people do something look that? But then when you go there
5
and you hear from the people they say well I am a single parent, I am not receiving any money
6
from the State, I have to work, we have to eat and there is no-one to leave this child, particularly
7
in urban areas, in rural areas at least sometimes the community, your extended family comes in,
8
but in urban areas there isn’t anything like that. And what options do people have? It's not to
9
justify it, it's to really just explain what came out on the ground.
10
11
Then just the need to develop alternative support measures outside the family. To develop a
12
code of conduct for family members on how best to support their family member with a
13
disability. Because I think for the most part families are doing their best under really difficult
14
circumstances and some families really just don't know how to support the person, so I think just
15
guidelines that NGOs such as Michael's and other DPOs could use when they go on the ground
16
to train will be so important.
17
18
And then reform the mental healthcare system, I cannot -- this is such a big, an important
19
recommendation in our context.
20
21
Then build skills to facilitate Article 12, ensure the registration of all persons with disabilities
22
and then underlying all this the need to include people with disabilities and their organisations in
23
the reform processes, the rural urban divide and the need for different interventions for those
24
different places and the importance of gender considerations. Thank you.
25
CHAIR: Thank you Elizabeth for that tour de force we've run horribly, horribly over time so I'm
26
afraid we've no time for questions, but the good news is that we have a round table discussion
27
after the coffee break and there will be plenty time for questions and answers then.
28
29
So I'd invite you to make your way to the lobby to enjoy the hospitality. Thank you.
30
31
Coffee break
32
33
DR QUINN: Good morning we're going to start in a minute. So good morning, we're now
34
going to open up a dialogue, open up the debate and review where some of the lines that have to
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be clarified before we move forward.
2
3
I just want to introduce to you Mr Justice John McMenamin from the Supreme Court of Ireland.
4
He is going to chair this morning's proceedings we are absolutely delighted and honoured to
5
have him with us.
6
7
It was once said, in fact there is a book with this title that justice Oliver Wendell Holmes was a
8
Yankee from Mount Olympus, we like to think some of our judges qualify to occupy at least
9
some small space on Mount Olympus and certainly Justice McMenamin is one of those.
10
11
Because he is feted to really enter into difficult terrain, which is to unfold the majestic
12
generalities of the law, but also to confront some of the raw edges of human experience and try
13
to make some wise decisions navigating between those two shores.
14
15
So there can be no better person really to try and draw out some of the problematics, clarify them
16
and then hopefully shine a light for the way forward.
17
18
We also have one other addition to the panel, several additions to the panel but you know most
19
of the people the one person who hasn't been formally introduced to you is Dr Ignacio Campoy
20
from King Carlos III University in Madrid and he is really an expert in the rights of the child,
21
and he has backed into disability law in terms of revolutions in legal capacity and working it
22
back into the realm of the rights of the child to see what kind of implications there are for
23
children's legal capacity.
24
25
So without further ado I'll hand you over to Justice McMenamin.
26
CHAIR: Thank you very much, first of all it's customary to say at a meeting like this, that it's a
27
great honour to be here, but when I say it is truly a great honour to be here, I mean it. Because
28
this is truly a centre, a world centre in this field and it is inspiring for somebody like me, who
29
engages in the area of law, to see a meeting, a group of people coming together from all corners
30
of the world, to participate in this very, very important issue.
31
32
I actually have some slight credentials in the area I was a High Court judge until a year and a
33
half or two years ago, did I have to wrestle with a case with dealt with Article 12 and the status
34
in Irish law but what I want to do is get away from Irish law, the Irish constitution and talk a
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1
little bit more generally, ask people to talk more generally, dealing with the issues which I think
2
have been addressed by all the speakers, and I think the general issues are, come down to
3
questions like: What does it mean to be a person? What does society mean? Does society have
4
rights when dealing with Article 12? How do we balance the rights of autonomy on the one
5
hand and the rights of society and rights of people close to individuals who suffer from a
6
disability?
7
8
They are some of the questions that judges have to face. Because the difficulty is that, in our
9
particular domain, we tend to deal with harder cases, cases which are not so easily resolved,
10
where concepts such as equality sometimes are difficult to realise in actually.
11
12
So that for example when one comes to dealing with the issues such as substituted
13
decision-making, questions may sometimes arise as to how do you achieve substituted
14
decision-making when the person who at the centre of a law case may wish to make a decision
15
when a court applying the old fashioned best interest test may feel it's not in their best interests at
16
all an may actually be life threatening.
17
18
So that's one side of the equation, the other side of the equation in the discussion I think is when
19
one tries to apply the precepts of Article 12 balanced with article 16, to what extent does
20
experience show that old tensions arise in a new guise, and does one reach a situation where the
21
paradigm shift which we're seeking to achieve is one which is a paradigm shift in attitudes, but
22
when it comes to the sharp end of very difficult cases, it's difficult to achieve when you're
23
looking at consequence and when you're looking, as the courts have to do sometimes, at the
24
orders that have to be made.
25
26
So the -- what I'm going to do is ask questions like that, can we have a situation where the law
27
can be value neutral? Can we have a situation where the law should be value neutral? Should
28
we have a situation where autonomy is something which is moved to a position where the
29
balance is so shifted, that society may decide in the long term that its attitudes to an individual
30
may change, or its duties to an individual may change.
31
32
I think they are some of the difficult questions that we have to deal with. How do we deal with
33
classification? Lawyers are always dealing with classification, is the very process of
34
classification so dehumanising as to create difficulties when one looks at the whole concept of
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autonomy?
2
3
Now these are all issues you have all been touching on, what I want to do to start off the
4
discussion is to ask Lucy, who has experience of the UK Mental Health Act, as it has operated,
5
to deal with some of those issues and to address some of the questions, particularly perhaps are
6
we dealing with old tensions in a new guise, on the basis of what many people regard as being
7
the best efforts yet to achieve the paradigm shift. And from then on I'm going to ask everyone to
8
participate in the discussion, the microphone will be available somewhere and I'm going to try
9
and be fairly fascistic because I want all the audience to participate as well, so if people go on
10
too long, panel be warned, I'm going to knock on the table in a very judge like fashion to make
11
sure that all of you have a right to participate as well.
12
13
Okay, so Lucy, I've asked some hard questions, how does the UK Act work and does it work?
14
DR SERIES: I don't want to bore the audience with a repetition of how the Mental Capacity Act
15
worked because I went into it yesterday but I understand the question to be is it the best effort
16
yet?
17
18
I suppose it's very clear to me, I think to most people who understand what Article 12 is about
19
that the Mental Capacity Act isn't compliant with Article 12 CRPD, this is because it
20
incorporates a mental capacity test to give effect to a legal capacity, so people with disabilities
21
are forced to satisfy certain criteria in order to claim their legal capacity.
22
23
So the question really is, is the Mental Capacity Act the least bad effort that we've yet seen? I
24
haven't done a comparative study of all different jurisdictions but I suspect that actually other
25
systems may well hold better frameworks, less bad frameworks.
26
27
I think it's important to understand the context into which the Mental Capacity Act was created.
28
Elizabeth did a great talk earlier today about the informal loss of capacity, in the UK we have
29
this historic power of the court called Paris Patri, the court can make decisions on behalf of
30
people termed lunatics or idiots in the unfortunate terminology of the past. It was abolished in
31
1959.
32
33
We also have the Eugenics Act called guardianship; in 1983 thanks to a powerful civil rights
34
movement the powers of guardians were massively retracted. So in 1983 at face value there
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1
were no formal powers to deprive people of legal capacity toe make health and welfare
2
decisions, decisions about where they lived who they lived with and so on. But that didn't stop
3
practitioners and carers from helping then selves to that authority to deprive people of these
4
choices. So people with disabilities were deprived of these choices on a widespread basis, even
5
though there was no formal authority for that in law.
6
7
So when the Mental Capacity Act came along what it did was regularise and legitimate what was
8
already happening on the ground. It also created a mechanism for a small number of people, the
9
kind of articulate people that I was talking about yesterday, to say hang on, I do have this thing
10
called mental capacity, so it did help a few people reach out and grab back their legal capacity.
11
12
But that isn't what Article 12 is about. It's not about helping a small number. It's about helping
13
everybody to reclaim control and power over their decision-making. So there is a reason why
14
the Mental Capacity Act is said to be empowering that's because in some way it is provides a
15
mechanism for some people to claim back their power after this informal loss of capacity. But
16
it's a really inaccessible route, it's not accessible to most people and it doesn't really build into it
17
this kind of idea underpinning Article 12 about supporting people to really realise their potential
18
for what they were calling self determination.
19
20
The other thing, this is a good opportunity to mention this, even in the UK where the Mental
21
Capacity Act is pretty popular amongst social care and healthcare practitioners because it gives
22
them a lot of authority with very few safe guards, there is real growing concern about the Mental
23
Capacity Act and the House of Lords this year appointed an ad hoc committee to conduct an
24
inquiry into the human rights compliance. Now this inquiry isn't some really radical inquiry they
25
are concerned that the Mental Capacity Act contravenes basic European Convention standards,
26
but it is of course a great opportunity for us to inject some CRPD debate, because that debate
27
isn't happening enough in the UK at the moment.
28
29
There is a second inquiry opened in the last week, by our equality and Human Rights
30
Commission, because there is growing concern that the Mental Capacity Act is being used to
31
deprive people of their liberty in social care institutions and in hospitals with totally inaccessible
32
safe guards.
33
34
So I couldn't comment on whether it's the least bad option. But it's certainly not the best we can
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imagine.
2
CHAIR: Lee-Ann, how do you feel Article 12 can operate in hard cases?
3
PROF BASSER: That's a big question isn't it. Ignoring the technicalities about international law
4
and domestic law, good.
5
CHAIR: We'll just get to the nitty-gritty here!
6
PROF BASSER: Okay, I think having a clear statement of legal capacity for all people in the
7
Convention, if it's brought into domestic law, gives a powerful defence in hard cases. It opens
8
up -- let me talk a little about Patrick's case that I put up as a case study PJB, it's under our
9
Victoria charter of rights and responsibilities.
10
11
This is the case of a man who was held in involuntary detention as a mental health patient and
12
where the hospital wanted to move him to a hostel and he didn't want to go and they wanted to
13
sell his house because they saw him having somewhere else to go as being an impediment. And
14
they persuaded the relevant tribunal that he was incompetent under the Mental Health Act,
15
therefore he lacked legal capacity and that it was in his best interests that the house be sold.
16
17
The case went to the Victorian Supreme Court and one of the things that the charter does is
18
recognise the human rights of people with disabilities, it has a non-discrimination clause in it.
19
And the judge in that case was able to use human rights principles, coming out of the charter to
20
acknowledge that while the man was lawfully detained as an involuntary patient there were no
21
grounds whatsoever for taking away his power to deal with his property and retain his home.
22
23
So having something like Article 12 provides a tool for self advocates for advocates and for
24
judges to look at, to up hold people's rights, but to consider the issue of legal capacity in a
25
different light.
26
27
Having said all of that, I know you wanted me to talk about the positive hard cases, I think that
28
the theme that's come out in Liz's talk and in some things Lucy said, in lots of the talks, is the
29
fact that we can have very clear, very good law, but if we don't change people's attitudes then the
30
hard cases can actually go the other way.
31
CHAIR: Thank you.
32
DR FLYNN: Hard cases is always a great question that as soon as you convince people that the
33
right to support exercise legal capacity is a real thing they jump straight to the person in the
34
coma, the person making a life threatening decision and so on, it's really important to talk about
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those because these are real situations, they are not made up, these are things that judges and
2
people on the ground have to deal with all of the time.
3
4
And I think partly this is why things like Mental Capacity Act exist; although I would agree with
5
Lucy I don't think it's the best way of addressing those.
6
7
Anna and I had wanted to get into some of this yesterday when we ran out of time, we had
8
thought about a number of scenarios that are real cases and that we could potentially discuss, so
9
there is one which Michael Bach describes and I think he described last year when he was here at
10
the summer school, which is a young man, an adult with intellectual disabilities who is in severe
11
pain, has a rotting tooth but is also really afraid of the dentist as many of us might be, and does
12
not want to go to the dentist to have the tooth removed and his mum who knows him very well
13
knows the way he communicates which is not through speech, says I can tell he is in distress, I
14
can tell he would like the pain to stop but he will also physically resist if there is any attempt to
15
bring him to the dentist.
16
17
This is one of the examples given about how would a right to support in exercising legal capacity
18
work there, what could you do other than impose a guardian on that individual or make a
19
substitute decision? Do you want to talk Anna about things we could do?
20
CHAIR: You notice the way they're taking over, you see that? Don't think I'm not unaware of
21
it! Go on.
22
MS KERSLAKE: Quickly, I think Michael might answer this differently himself, but I think the
23
really important thing is that shift from will and preference to - sorry from best interest to will
24
and preference. So instead of allowing all the things that you have heard around that person to
25
control what happens in that situation, so the mother says he is in pain, I know he is in pain, but
26
he is very scared of the dentist and he needs to go to the dentist, so that's the information we
27
have.
28
29
We actually haven't been given the information about the individual himself, why he is reacting
30
this way from his own perspective, not from his mother's. And what could be done to create a
31
situation in which, that's optimal for him.
32
33
And there is actually so many things that can be done. Bring, get a different dentist, maybe he is
34
scared of one particular dentist that he has been with. Or make sure there is a dental hygienist
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that he really feels comfortable with. Or do as much as you can from the home, depending on
2
what actually needs to be done.
3
4
But the really important thing that I think Article 12 brings us is an obligation to not look at
5
what's around the person and what we think the result needs to be in the situation, but instead to
6
look at the actual individual and what can be done for that individual, what support can be
7
provided to allow him to be able to do what he actually wants to do, which might very well be
8
relief from pain, but he just needs the right situation around him to have that done.
9
10
And unlikely forcing him into a traumatic situation with a dentist he might be afraid of, in an
11
environment he is afraid of, can do more damage in the end than leaving the tooth maybe. There
12
is lots of other issues around this, I don't know if anyone has other comments or if you want to
13
move on, I hope that helped with the discussion.
14
CHAIR: Could I just ask another question looking from the point of view of UN introducing
15
Article 12, was there a tension in trying to bring in what might be seen as top down, in other
16
words establishing a principle and then trying to apply it among all the Member States, because
17
the law operates in Pa way which is induction, it moves from the individual facts to principle
18
very often, and the difficulty about that is sometimes when you try to apply principles to the fact
19
it is doesn't fit. So can you help me there?
20
MS KAYESS: I assume this is directed at me, thanks John. Yeah it was about establishing
21
principle, this is what was seen as being a fundamental move in the way people with disabilities
22
were conceived, they were to be embedded in international law as rights bearers, as rights
23
holders, as people who are recognised in a legal sense. So it was about enshrining personhood.
24
So how can you establish that in international human rights law and then not have a clear
25
statement of equal recognition before the law contained in the operative articles?
26
27
So it was very much about establishing a principle, but you're quite right. There is a chicken and
28
the egg situation, because fundamentally Article 12 is only ever going to really work where we
29
get all the other elements of the Convention to work. Until people with disabilities are living
30
and participating as members of our community we won't get the attitudinal change and we won't
31
have the mechanisms where people don't question the decision-making or legal capacity of a
32
person with a disability.
33
34
So yes it was a bit top down, but it was a way of creating the situation that we've got this type of
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forum. This conversation is being had, this discourse is being had around the world. So this
2
movement, there is the opportunity for it not to be so top down that now grass roots is embracing
3
it, that we'll get some bottom up and that sort of hand on experience that Anna's talking about,
4
problem solving and looking at the ways of not what should be done, but how things can be
5
done.
6
CHAIR: Does it make a difference, can you actually say yes it makes a difference to the bottom
7
line decision that comes out of a case, if it comes to a court case, or does it just affect the
8
process?
9
MS KAYESS: No it's got to affect more than just the process. The court case is about getting
10
your answer and nine times out of ten not getting the right answer or is there a right answer. A,
11
it affects the process, that's good. But the chances are that a person with a disability is going to
12
have a greater opportunity to have an out come that is more in keeping with what they want if
13
that process is influenced.
14
CHAIR: Anyone else like to have a view about that or anyone from the audience?
15
SPEAKER: I just want to raise a point in relation to that situation. I have just noticed appoint
16
that hasn't been mentioned from the panel, of a situation that I have experienced, having
17
completed a recent project with Genio where we interviewed and were involved with people
18
with disabilities and talk to their parents and key workers about situations that they are in
19
moving from institutions into independent living, and the funding from Genio went to various
20
organisations and it was basically an independent advocate that got to know a person with a
21
disability over time, but I think this person in this case, okay and I don't blame him not liking
22
any dentist because who does?
23
24
But as you mentioned it could be a thing that maybe he doesn't like the person or maybe he had a
25
bad experience, that maybe he hurt him in the past or that might be some other dentist. But that's
26
where it should be a case for independent advocates to get to know the person, the individual,
27
over time, so that that, when that person knows the individual, they will know -- he will be able
28
to express in a way that the independent advocate will understand as to what he wants, rather
29
than the parent.
30
31
Because parents are very overprotective of any child with a disability. So I think outside
32
independent advocate would be an idea in an ideal situation like that. And it sounds to me
33
similar to the moot court scenario that we'll be dealing with at the end of the week, so that's just
34
a point I thought should be mentioned in this situation. Thanks.
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CHAIR: How do we make sure that independent advocates are, or persons engaged in
2
supportive decision-making are actually representing the views of the person rather than actually
3
exercising a best interest test themselves, how do we ensure that that doesn't happen? Anyone
4
any views about that?
5
DR FLYNN: This is really important because when we talk about the safeguards that are needed
6
for supported decision-making we are really trying to make sure that supporter doesn't become
7
substituted at a certain point and that's a real and present danger.
8
9
But there are ways in which you can put in place checks and balances to make sure people are
10
listening to what the person is telling them and trying to put aside their own views on the
11
situation and just represent what the person is saying. But that is a real skill that has to be
12
developed over time and people need support in able to develop those skills.
13
14
There is a really good example of the pilot project on supported decision-making done by the
15
office of the public advocate in south Australia and Cher Nicholson in Ireland a few weeks ago
16
talking about the project, she was the facilitator there who worked with over 20 I think
17
individuals who wanted to use supported decision-making, helped them to choose their
18
supporters and decide what areas of decision-making they would like support with.
19
20
But she was basically the person supporters could call if they were worried about anything. So
21
they would say the person wants to make this decision I feel really strongly about it, what do I
22
do? And she would take them through the steps of how do you make sure that you are not
23
stepping in on what she calls rescuing the person. How do you make sure that you are just
24
stepping back, listening to what the person wants and putting that forward and not letting -- it's a
25
real skill. And there is lots of ways in which people need to be supported to develop that. But it
26
can be done. And there are checks and balances and monitors that you can put in place to make
27
sure as much as possible, but there will always be situations in which it's very unclear, especially
28
where someone is not communicating in a conventional way and there are very few people who
29
understand them.
30
31
Sometimes we'll be taking someone's word for what they say a person wants, and that does
32
concern me. But I think as a whole, it's better to take that risk within that system.
33
MS KAYESS: The south Australian trial was very interesting for that, but when they were
34
developing the process around the new south Wales trial what they were doing with supporters
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was talking through a process where they had to be able to demonstrate to somebody else what
2
the will and preference of the person was.
3
4
So what did that mean to them and how could they demonstrate that they would take it -- they
5
are doing it abstract example examples, but it was a way of making them think about how to
6
approach the will and preference concept.
7
CHAIR: And do difficulties emerge if family members are identified as the advocate or the
8
person supporting the decision-making process?
9
MS KERSLAKE: I think this highlights how important it is to make sure that everyone is
10
recognised as an individual who has standing to bring a claim before a court, because when these
11
things happen, when maybe a supporter represents themselves as knowing the will and
12
preference and takes a legal action and the person is actually being oppressed and substitute
13
decision-making is happening, that individual has to have the ability to go to a court and make
14
sure that their rights are respected and right now in most jurisdictions a lot of people, the
15
cognitive disability and physical disability being brought up don't have that access, especially
16
when they have someone supporting them to make decisions.
17
CHAIR: Elizabeth, isn't there a difficulty that can sometimes emerge because a family member
18
can legitimately say I am the person who knows the person best, I know what they are seeking to
19
communicate yet on the other hand you can get very mixed messages and might not get the
20
correct message at all, but maybe I'm asking you a question you want to deal with something
21
else?
22
MS KAMUNDIA: What I wanted to say was that in our context we don't have independent
23
advocates in that sense, but what I have seen happen is for instance one of the members of our
24
disabled organisations called users and survivors of psychiatry, the doctors said that she need to
25
go through ECT, at that point what she had indicated was that she would like her husband to
26
support her in making those kinds of decisions if she is in a crisis.
27
28
So what he did he, instead of what usually happens, which is that families just quickly sign the
29
form, is that he went back to the peer support system that has been set up by the users and
30
survivors of psychiatry, so there was a discussion where people who have gone through ECT
31
gave their views to the husband and people who have declined gave their views to the husband,
32
and so this deliberating took about two weeks before they reached the decision.
33
34
So in other contexts it's really DPOs and peer support mechanisms that come in.
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CHAIR: You gave an example this morning I was fascinated by it, because it seemed to me to
2
identify some of the problems, you have some family member who is not taking their medication
3
and the family say that's your autonomous choice but our autonomous choice as a family is we
4
can't have you living with us any more and it seems to me that that's a classic example of the
5
difficulties which can emerge.
6
MS KAMUNDIA: That difficulty emerges a lot. The focus group discussion I had that came
7
up. The saddest part it have was even the husband to one of the ladies who was present there,
8
when he said that he insists that she takes medication, on the other hand he said to me, I'd like to
9
know does taking this medication have such serious side effects, because when we got married
10
she didn't have a physical impairment but after ten years of taking this medication she is almost
11
paralysed on her left hand, so it's very complicated on the ground.
12
CHAIR: Yoshi -- no this way -- in Japan have you had that kind of experience as well?
13
MR IKEHARA: Yes traditionally Japan respects family position so doctors or psychiatrists are
14
usually asked families opinion. So for example in voluntary hospitalisation doctors,
15
psychiatrists ask that, ask parents or spouses to accept the hospitalisation or not.
16
17
So we advocate strongly against such kind, because family members often have interest
18
conflicts, so we are against such kind of situation. And we learned some educational project for
19
family members in such a situation.
20
21
We recommend some principles for families at such situation. For example you should, so for
22
best interests or substituted judgment or substituted alternative, or the most inclusive situation, or
23
such kind as that. And some family members are so much educated so they follow such kind of
24
principles, and the situation is getting a little bit better, but we have still a lot of in patients and
25
it's a problem.
26
CHAIR: Now we have two other panel members I'd like them to contribute from their
27
backgrounds.
28
MS MILOVANOVIC: Yes the issue of families emerges in Serbia as well because family has a
29
very important place in a person's life. But we have to go back to where that paternalistic
30
approach led us.
31
32
So for acting in the best interests, and I believe that a leading role was actually led by families
33
and family members, to protect individuals from harm led us to this paternalistic system that we
34
have worldwide. And that is that people are denied choice.
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1
2
So we really have to shift how we look at the person and that it's the matter of really paying
3
attention to what a person has to say. Because yes families maybe act in the best interest and
4
maybe know what he a person wants, but we have to think beyond that, and how will that person
5
live when there is no family to support her or him?
6
7
So we have to set up a system which will actually ensure that the will and preferences of a
8
person are respected, regardless whether that person has a family or not.
9
CHAIR: But does that sometimes mean you might be exercising a best interests test? Because if
10
you have to explain to the individual that the, I call them the choice maker, the person that has to
11
make a choice, your choice may have certain consequences and one of those consequences is
12
that your family may say we don't want you to live with us any more, are you not in effect
13
negating their autonomous choice making capacity, because what you are doing is engaging in
14
guidance and saying look think of the consequence. Now on the other hand you say but are you
15
not entitled to do that so people think through their decision, how do you balance between
16
autonomy and perhaps guidance or posing issues for people? And I don't want to exclude Carlos
17
either.
18
DR SERIES: I think it's important to bear in mind that Article 12.4 the contentious article that
19
Rosemarie was describing yesterday does say that supports for the exercise of legal capacity
20
must be free of undue influence.
21
22
Now it can sometimes be very difficult to distinguish between support and undue influence but
23
that's not an issue that's made any different by avoiding a substituted decision-making paradigm,
24
we find that problem under the Mental Capacity Act all the time. We find that problem in case
25
law on undue influence that has nothing to do with disability, that's a problem in human
26
relationships and a problem of the mind, as philosophers would call it.
27
28
I'm not sure that keeping the best interests out it have makes it easier.
29
CHAIR: You notice the way I'm preserving equality so everyone gets a say.
30
MR CAMPOY: I think I have to say something about the Spanish model because it's not what I
31
want to say, but in the beginning we want to differentiate that there is a capacity, a legal capacity
32
but it means that you are, you have legal rights. And you can exercise your rights, so in the
33
beginning you can go through a process, judicial process that can make you incapacitated to take
34
decisions about your life, because they think that because of your disability you can't take
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decisions on your own life, you can't manage your life. So they can incapacitate you.
2
3
In this sense, for the family what usually happens with young persons with disabilities when they
4
are a child, they are put under the power of the parents. But when they grow they can go to this
5
judicial process so they can be, say that they are incapacitated person so the parents start to be
6
the tutors of these persons. So it's the same paternalist measure, before you are parents and you
7
take the decision for the best interests and after you take the decision for the best interests, but
8
you are the tutors, but it's just the same.
9
10
So we are moving and we are thinking that we have to, this is not Article 12 at all, so we have to
11
change. But at the end May made it not a judicial, they think they have to change very radical, is
12
there some measure that we can take is all right. Even there is a sentence of the supreme courts
13
in 2009 that says that, in Spain it is okay with Article 12 of CRPD and also the answer of our
14
State to the committee, the question of what steps are you taking to change the model, they say
15
well our model is okay with Article 12.
16
17
So that's a problem because I think it's not very good understanding of what it means really this
18
Article 12.
19
CHAIR: Eilionoir, were you...
20
DR FLYNN: I was going it make a small point, when you talked about what if someone's family
21
was going to say that's okay, if you make that decision our decision is not to allow to you live
22
with us, I want to go back to what Rosemarie said about we can't look at Article 12 in isolation.
23
We can introduce the best most Article 12 compliant legal framework tomorrow and it wouldn't
24
matter if people didn't have real choice in their live in practice, if people don't have good peer
25
support or good community living options it doesn't matter if they get to make their own choice
26
because they get to make choices between really bad alternatives if that's all that they've got,
27
forced choices.
28
29
So I think that's why we need to think about realising Article 12 in conjunction with all the other
30
articles of the CRPD and not thinking that although Article 12 is really important and touches on
31
all of them, it's not something if we just solve Article 12 everything else will happen. It all has
32
to be done together, even though that is a huge challenge.
33
CHAIR: Anyone in the audience like to make an observation?
34
SPEAKER: Thank you. I want to pick up from where Eleanor really left off, because even in
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the African context just like Elizabeth tried to marry the CRPD and the realities in the African
2
context, I'm sitting here thinking maybe the solution to all this is actually empowering the person
3
with the knowledge, the ability to communicate, and as we try to implement all the other articles
4
of the Convention, because look at us in African, Uganda, Kenya and so on, the person with
5
disabilities is born, one your father will leave the home because this woman has come to me with
6
a curse, she is bearing me disabled children, then you are not taken to school, so how are you
7
going to be able to learn anything? And be able to make a very informative decision, even as in
8
your own capacity as you the person who is disabled.
9
10
So you will move away from having no education at all, you cannot even have an employment,
11
you cannot even begin talking about having property, income and money for somebody to come
12
and help you, because you don't have anything, you don't have enough education. So it leaves
13
you with just the family system, that's how the family end up being your everything, because the
14
family has not empowered you to be yourself.
15
16
So not until, for me I think not until we break through, that's what, the door, we need to open that
17
door to empowering the person to be able to learn, communicate, understand and make and
18
inform their own person and make their own decision to the family and to everyone else. For me
19
I think that is the solution. Thank you.
20
SPEAKER: Thank you I think it's a very poignant example that you've just discussed about the
21
conflict of interests between a parent who is the representative of someone who is receiving
22
supported decision-making and they hive with him and they are also a representative. I
23
understand the point that full implementation of the CRPD would be need to make sure that
24
there are safeguards against undue influence there, however in a real world application it's very
25
unlikely that the entire CRPD will be implemented all at once.
26
27
So I wonder maybe when Article 12 laws are being introduced and crafted if it's a good idea then
28
to maybe have a safeguard where the person who is the representative of the person concerned
29
cannot be the person who controls the living environment, otherwise there is a situation where it
30
always says do what I want you to do or else there's the door or in the reality of people with
31
disabilities, do what I want to you do or else here's the institution.
32
33
It seems like there is a looming threat. So how in crafty legislation, in a no perfect world, can
34
that really be safeguarded against?
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SPEAKER: I just want to ask if you have heard of any examples where maybe there was a
2
parent who was taken responsibility, if they can get some advice from other disabled people?
3
Because I think if I was helping someone else it would make a decision for me it would be my
4
parents but I would definitely want someone with a disability or someone with a similar
5
experience to help them, because there are so many things this they would not understand, like
6
how it is to receive assistance or something like that. So I just want to know if you have any
7
examples where disabled people themselves have been involved in this process?
8
CHAIR: Thank you. I promised I'd come to you next the person in the second row.
9
SPEAKER: Hello I think this is very interesting. I have two children with disabilities and they
10
also have difficulty communicating. My youngest is 20, she doesn't have words.
11
12
So my experience, you are talking about parents are both the worst and the best. It's very, very
13
difficult to be a legal guardian, how do I know what's the best? But my experience is that the
14
municipality, the social workers and the psychologists, the doctors, they say no, you can't apply
15
for personal assistance, no they can't live alone, no.
16
17
So I think the discussion about the family is, I can see the family is the worst but I think
18
primarily it's the best, because they know how -- they know the setting, they know the child an
19
the person from childhood until adulthood. Who else does that in our welfare system in Norway
20
-- I'm not talking about Africa, but in Norway. Thank you.
21
CHAIR: Somebody else in the back row.
22
SPEAKER: I want to raise maybe listen to some comments about how to build these balance
23
between advocates and family members. Because what I feel is of course we can think for one
24
side, that okay we have to build communities, everybody will have natural supports, everybody
25
will be free of prejudice and people will flourish naturally.
26
27
But on the other side we say okay family members will maybe have oppositions imposed so my
28
concern is building a structure of service providers for supported decision-making or for
29
independent advocates is not going to throw us again to the same point where we started, with
30
the biggest structure for supported decision-making, but isolating the person from the families
31
and community, because what I feel is -- I'm going to take it personal, but when I decided to for
32
instance eight years ago, five years ago, drop medication, my family said that's a really, really
33
bad idea, and probably they were right! But it was my decision, it was better for me, but not
34
better for them. And actually probably they were right, it wasn't better.
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1
2
But I think life, you will always find conflict, that's natural. Because what is good for you is not
3
going to be normally good for the closest person around you, because that conflict will arise
4
because they know you better.
5
6
And I think we have to deal with that and we have to put the balance just to mediate in this
7
relationship that would flourish through life. But my concern is how to build a new service, a
8
new structure, the whole draft again to the point where we started.
9
SPEAKER: Just a quick point, I am a PhD student here in the centre, my PhD is relating to both
10
Article 12 and Article 19 and also user led service.
11
12
So I go to the triangle of where this is going really but more than that, I want to say that ten years
13
ago I started university -- in 2003 I moved out to an apartment in Galway and my parents had
14
trepidation, anxiousness that everything would work out for me. But also they made me who I
15
am so they made me appreciate the right of making a mistake, learning by that mistake and
16
hopefully not making the same mistake again! But that is the single most important gift my
17
parent ever gave me, the right to make mistakes. Because it's by those mistakes that you learn,
18
same as the government have made plenty of mistakes with people and regular mistakes with
19
their lives. Same with the judicial system in that sense, in that they don't understand what it is to
20
live with disabilities, or even though the college often run them, these days of going around in a
21
wheelchair and giving people examples of various disabilities and how hard it is, but they get out
22
after an hour.
23
24
Even doing my PhD those are things that I have to worry about, but then I go home and I still
25
live with a disability. So the end of it is we have to do all three. We have to make the
26
government aware of their responsibility to put resources in the right place. Then we have to
27
make the legislatures adjustments, which I would have a preference towards a personal
28
assistance Act, which defines the role of a personal assistant, which takes it away from
29
independent living, because the phrase independent living is to live entirely on your own which
30
nobody ever does. So it goes back to that point anyway. So that was a quick summary of where
31
I'm at. And I hope I explained some of the points that I'm living with. I have to marry all those
32
parts to my life, but all the parts of my life define who I am, who I want to be in terms of writing
33
the PhD because I'm passionate about leaving a legacy that is better than the one I started with.
34
CHAIR: There was a speaker up in the red.
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SPEAKER: I would just like to begin by saying that I think it's important to remember that
2
Article 12, the energy behind it came from the situations where guardianship had failed and
3
failed people. I think it gives us a specific challenge to be creative, if we think about Article 12
4
in the old framework it won't work, we have to shift into a new framework and a new way of
5
thinking about things.
6
7
And that's very challenging and challenging for us who are professionals, because instead of
8
people making decisions about those who can't make decisions, they have to think about how am
9
I going to support this person to make the decisions that they need to make? And that shift I
10
think is absolutely critical, that we move away from the denial of rights to the support of rights.
11
12
Martin is sitting beside my me, he want to give the example in relation to the query about the
13
dentist and I think that's a good example about where we need to be creative and thinking about
14
other ways to respond to the same situation. So he was saying maybe the person could have an
15
anaesthetic and that might help them to get over the fear.
16
17
Recently I was in Belfast and I met a community dentist, a dentist to come out to your house to
18
treat you, to me I never heard of that have before, so we have to think about new ways of
19
working and responding that do relate to individuals and individual needs and support.
20
21
And just to make a comment of Elizabeth, like your situation in Kenya where a small number of
22
people are under guardianship similarly in Ireland we're at the situation at the moment, we are at
23
the risk if the new legislation isn't right of increasing the number dramatically, maybe the ward
24
of court office is currently about 3,000 people, there is potential it could be 30,000 people or
25
more under guardianship orders, so it's really critical that we use our energy in a very different
26
way from what we have done before and for me that's the essential call of Article 12, to respect
27
both parts of personhood, the individual part and our roles in society part, the two elements of it.
28
CHAIR: The woman in the middle.
29
SPEAKER: Thank you, I wanted to address again this best practice we have heard about from
30
Canada and Australia I think, two examples of best practice for supported decision-making
31
system.
32
33
I would like to know, we are searching for the best model in Norway and I guess all the
34
countries here. To what extent has the supported decision-making systems in Canada and
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Australia learned from those who are supposed to lack capacity themselves? Because what is
2
disturbing me is that we can achieve supportive decision-making systems but they will be just
3
the same as those substituted decision-making systems if we are not going to learn from those
4
who are supposed to lack capacity, legal capacity themselves.
5
6
Those could be both those people who we know can articulate themselves, gathering those
7
people who are mentally and intellectually disabled or supposed to be not acting in their best
8
interests and that could also be those people who have for a period of time, due to an accident or
9
something like that, been incapable of speech, because I know people who have for a while been
10
unable to speak and those people have a lot to say about the situation they were in, in that
11
situation, which can learn us a lot about how they want to us, or the supported decision-making
12
system to approach them to handle them to give the options and treat them.
13
14
So I just wondered do we have any best practice examples from any country, which are building
15
upon experience of disabled people themselves, those who are suppose to lack legal capacity.
16
CHAIR: So two or three people who wanted to contribute in the top corner there and then I'll
17
come back to the panel. And ask them to respond.
18
SPEAKER: My name is Christina I'm a service user as well and about that case, in those
19
situations they should be taken, given their choice in those situations in the first place, because
20
as Marie was saying earlier on, in those situations we should be given a choice, in those
21
situations. Because it's ludicrous if you are going back to the old system, institutionalised
22
situation.
23
CHAIR: Very good, thank you very much. And there were two people in that section of the
24
audience.
25
SPEAKER: Could I ask the audience members let's say the gentleman if he needed dental care,
26
if he developed Sepsis and needed treatment in order to save his life, would a doctor treating
27
someone under the doctor necessity common law be in violation of Article 12 of the UNCRPD?
28
CHAIR: And then immediately behind the last speaker.
29
SPEAKER: Thank you I'm not fluent in English so I will ask help from my colleague Gabriel to
30
translate.
31
32
It's very difficult to address legal capacity in an African context, in the first place because a
33
disability is still taboo in Africa. You don't need to see this on TV or hear in the media because
34
African people come across every day people that are locked away, chained away, so it's a
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normal way of seeing life in Africa.
2
3
From other colleagues who talked about Africa, who preceded me, this issue of visibility has to
4
do with education and awareness. And education will help with people accessing information,
5
because most of the time people with disability, they don't exercise their rights because they
6
don't know that they have any rights, so are their families.
7
8
Another issue is related to the best interests, and from my experience, the work I'm doing with
9
the network of disability Mozambique we conduct awareness in the community and we sensitise
10
them to take also their children to school, because that's the best for their independent living for
11
their future. And the biggest difficulty is my child should have you -- how can I take my child to
12
school? In the first place he would need a wheelchair, he doesn't have that wheelchair, even if
13
he had a wheelchair there is no tarmacked roads or anywhere you can walk with wheelchairs, so
14
it's kind of barriers like that, that will prevent this family taking the children to school.
15
16
And this increases the barriers, because it emerges as another need that needs to be addressed
17
before the right is fulfilled. In this way shows clearly that we can continue with our sensitization
18
to take the children to school, but before we address the fundamental issues faced this will not be
19
a reality.
20
CHAIR: Thank you very much, what I'm going to do now is ... I'm going to allow you make a
21
brief point then after that I'm going to ask the panel. Now it's 1 o'clock would people like to
22
carry on a little bit further with this? I'm going to let you choose or whether you would rather go
23
for lunch? Okay we'll carry on for a bit.
24
DR QUINN: I won't hold you up because you have a right to food, a question for the panel
25
particularly for Rosemarie, you can get me back later! This is apropos Elizabeth's point earlier
26
on about decision-making when I go home this evening I'm going to make spaghetti I'm not
27
consulting the children, I'm not interested in their will and preference, they're teenagers -- but it's
28
interesting because a lot of legislation around the world exempts informal decision-making from
29
legal capacity. That's important because those tiny decisions, unless you are allowed make them
30
you can't build up capacity and you become aggressively de skilled in some of the important life
31
skills so my question to you particularly Rosemarie legislation that purports to exempt informal
32
decision-making, in other words allows people to make all sorts of decision-making, does that
33
violate Article 12 of the Convention?
34
MS KAYESS: Informed decision-making is such a tricky one. As Elizabeth so articulately
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pointed out this morning, that the bulk of what goes on in Kenya is probably the bulk of what
2
goes on around the world. Guardianship is a very small element of the exercise of legal capacity
3
for people with disability worldwide. How far can we delve into that private sphere? How much
4
do we want to structure down to those minutiae elements of a person's life?
5
6
And I think it comes back to what a colleague of mine has said that this whole process really
7
needs to be organic, I know I harp on about this, but it's when we don't see people with disability
8
as others, as different, and that we've got a sense that -- and people with disability themselves,
9
have got a sense that they can make those decisions and that I don't want spaghetti so I'll make a
10
cheese sandwich before even get near the kitchen!
11
12
Until you've got that level of competency to engage those decision-making powers and build on
13
those decision-making powers, I suppose families then can't just take on informal roles and take
14
control. But again they have to be the family, and the community has to be, in a space where
15
they don't just think it's okay to take that informal role and to deny that ability for growth and
16
development.
17
18
We do it with kids all the time. Whether they've got a disability or not. I'm as guilty as hell for
19
making decisions for my nieces or nephews who cares whether they like it or not! You sleep at
20
my house, well abide by my decisions! And it's not a very good answer, and I'm sure my learned
21
colleagues on the panel have a better answer, but I don't think Article 12 -- I think it would be a
22
shame if Article 12 was used to be more invasive. I don't think -- I would be really, really
23
disappointed if people saw Article 12 about creating formal structures around people's lives to
24
that level, I don't know what the rest of the panel think.
25
MS MILOVANOVIC: This is very important and I think the type of issue that we often don't
26
really allow choices to our children, people who are close to us. But the issue here that we are
27
talking about is that we shouldn't use different parameters if a child has a disability, so if we
28
imply different principles then it's a problem and then we are facing a problem in terms of
29
Article 12 of the Convention. If we imply double principles to who is allowed to accept our
30
decision or not.
31
32
And I wanted to tackle two issues, one is that a few times it was mentioned whether the family
33
should decide or informal supporters, but we are forgetting about many other people surrounding
34
the person. So what about peer support? And that was actually that issue was raised. And we
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1
have terrific examples, since we work with self advocates a lot, we have terrific examples when
2
they resolved the support they needed with their peers, their legal capacity was questioned on
3
whether they are able to manipulate with the money, and then they asked their friends to help
4
them to understand the value of money, so they received support and they argue that their legal
5
capacity shouldn't be taken away, so yes definitely work with self advocates and peer support is
6
very important, and surrounding the person with important people, with people that know her is
7
definitely what will lead us to much better places for people to be able to exercise their choice.
8
9
And another thing is that, it was raised also, that we have to allow a person to gain skills in
10
decision-making, and if we are isolating people, either within their families or within institutions
11
they will never be able to develop skills to take a risk, to learn from their mistake and thus
12
become able to make decisions on their own.
13
14
So really it's a crosscutting issue, we have to allow children at the earliest stage to be included in
15
their natural environment to be able to go to school, to be able to be surrounded by others in the
16
community so that they can really gain skills that will then allow them to fight for their own
17
choices.
18
MR CAMPOY: Yes I want to ask to this question, and perhaps if I can explain myself, to
19
answer some of the questions that the audience made before, or comments that they made before.
20
Because in my point of view, the informal decisions and also the decisions with regard to taking
21
by a family or community, to me is not, or these decisions are not decision that is don't affect
22
very high to the development of the our own personality, so we don't have to accept all the
23
decisions that are going to be made about us, because if we think that we can accept how these
24
decisions are taken -- if I lived in a family or a community I can agree with how the decisions are
25
taken. So I don't have to give an explicit concept to all the decisions that are taken. So what I
26
think is for the family that said before, the balance, someone said before if the family are the best
27
or the worst?
28
29
Well the family are the beginning of course, I think it's a very good environment where will you
30
can develop your permit so the development, that's the environment you have to live and the
31
decisions are made for your parents, I think that's good. But we have to be careful, because we
32
can't go to the place that all the decisions that the parent take for the children are the best for the
33
children, because this doesn't work. This is what happens in 1875 with a famous case of Mary
34
Kelly and the committee say well we are going to take this child to a court and they find that
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there is no law to go against the parents because we live in a world that the parents take the best
2
decision always for the children.
3
4
Mary Kelly went to the court like animal, because there was a law that protect the animal against
5
the owner of the animal. So I think -- what I say from my point of view we can begin at the
6
beginning with the parent and the family, but Article 12 makes the point that we have to build a
7
structure, a parallel structure that allows us to go to another place to take decisions if we are not,
8
we are not treated well in our family or our community, like the other person in the audience
9
said. So you have to take your decision for your own development, so if you are not right in
10
your family or community you can go to other places why, because you can exercise your rights
11
because there is an article now that allows to exercise your rights.
12
PROF BASSER: Okay in my household you have may put in a bid for what you would like
13
some evening but everyone eats the same -- I'm not really trivializing but there are some
14
informal decisions -- we all live in relationships, we all live with people, so there are some
15
informal decisions which are clearly inappropriate to apply Article 12 to, except to the extent
16
that we all negotiate when we live with people what goes on.
17
18
There are other decisions that trouble me a bit or trouble me a lot, if the informal
19
decision-making process mean that is people with disabilities aren't making their own decisions.
20
21
So that whole concept of person responsibility that we have, which is kind of to protect the
22
doctors or the service providers, which allows a whole long list of people, theoretically in a kind
23
of order of hierarchy but not really, to make decisions on behalf -- so my daughter lives in a
24
community house with a number of other people, usually I would accompany her for important
25
medical appointments or whatever, but day-to-day things someone from her house will go with
26
her, she has a communication disability amongst other things.
27
28
I have an issue that if I'm with her I want to engage with her, a choice thing, explaining what's
29
going on and breaking it down to get her opinion. But when she's taken with other people there
30
is no guarantee and very often something comes back to me, the recent thing is a dental issue,
31
I'm overseas the dentist has made a recommendation, everyone wanted to go forward with it
32
because the dentist recommended it. I've said wait till I'm home, because it's not an emergency
33
and we need to find out what Clare wants to do.
34
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So in those informal situations where there are more important decisions, I think Article 12 does
2
have a place. But the difficulty is obviously in distinguishing those kinds of decisions from
3
what's for dinner tonight or what are we watching on television.
4
MS KAMUNDIA: I wanted to agree with you absolutely and to give some closing remarks in
5
response to some of the things that were said.
6
7
I think that from everything we've heard it's so important to empower grass roots organisations
8
in the context of Africa, particularly if self advocacy or peer support or other more practical in
9
that context supports are going to be provided or made available, so I think that is one, so the
10
people who are working in those contexts, it's so important to just understand what Article 12
11
means and then be able to take that to the ground.
12
13
Another thing I'd like to say is the importance of being sensitive to that tension within the family
14
and how that should inform your approach when dealing with families, so that at the back of
15
your mind you know the importance of autonomy and you know that's what you're aiming for.
16
But how to get there. I think it's so important to think about that.
17
18
Then I just wanted to comment something about Article 32 on international co-operation.
19
Because I think there is so much room in this one for developed countries and developing
20
countries to have a dialogue, and I think that expertise on this is lacking so much in a lot of
21
countries, and we are all trying to figure it out. But I'd really like to emphasise that, because I
22
came to Galway because of OS F and that's how I have ended up going back home and doing
23
some of the work that I'm doing there. So it's important to point that out.
24
CHAIR: Well I think we're reaching our closing phase now. Could I just first of all thank all the
25
panel members on your behalf for their super contributions. Could I also thank each one of you
26
who contributed for your revealing and remarkable contributions, there comes a time as a judge
27
when you don't make comments about people because the comments that have been made speak
28
for themselves, and what is remarkable today is that so many people spoke for themselves and
29
said things much better than other people could ever have said for them.
30
31
Two things I would just like to mention. From a judge's point of view, from a court's point of
32
view, I think there remains a question of that very boring word justiciability, how do you get
33
Article 12 down to dealing with individual concrete cases so that a judge will know what
34
decision to make in accordance with Article 12, as opposed to, I use the word advisedly, as
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opposed to trying a best interest test in another guise.
2
3
And the second question that I think is still there, although many people answered it in many
4
different ways is the extent to which Article 12 is not only a statement of principle, but it is also,
5
to use a corny phrase, a journey, in other words an identification of ways in which people who
6
are involved in decision-making, but most of all the people who are the subject of those
7
decisions can actually engage in the decision-making process.
8
9
The challenge is I think, to identify, to use the old phrase, when we got there. What is the
10
ultimate objective of Article 12? When will we be able to say yes those objectives have been
11
fulfilled? For myself I just want to thank you all very, very much for your super contributions,
12
to the panel on your behalf and Gerard for the invitation, thank you very much indeed.
13
DR QUINN: Just very practical point before we break for lunch, by the way we'll come back
14
around 2.15 not 2 because we have a right to eat and a duty to eat.
15
16
We just noticed that there is no coffee break listed on the afternoon programme, that's not an
17
example of informal decision-making to take it off the table, just simple neglectfulness. So we'll
18
have the coffee break right after eve speaks and she just arrived, welcome to the room.
19
20
It's quite remarkable this afternoon, because Eve, I don't know if any of you saw the Senate
21
testimony on ratification of the Convention, really a fantastic spokesperson for the Convention in
22
the US context, alongside her we have people like Camilla Parker Ines Bulic, Rannveig from
23
Iceland and her colleagues the best of Europe, so we'll have the best of the US and Europe this
24
afternoon.
25
26
If you are walking the promenade here in Galway beside the sea side, we generally say next stop
27
Boston, so this transatlantic bridge is quite important to us so enjoy the lunch and thank you very
28
much again panel and Justice McMenamin.
29
30
Luncheon adjournment
31
32
CHAIR: Hello everybody, you are welcome back to this afternoon session, we have our first
33
speaker, Camilla Parker, who is going to talk on Article 19, the theme of this afternoon is choice,
34
and Camilla has a very impressive CV, a founding partner in just equality which is a human
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rights consultancy based in London and she is masters in human rights, she is a consultant for
2
the Open Society Mental Health Initiative, and she has been a member of mental health and
3
disability committee of England and Wales, she is also doing a PhD on the neglected area of
4
children and mental health law at the university of Cardiff, part-time, I don't know how she does
5
all these wonderful things.
6
7
She has written a lot as well in terms of Article 19 for Open Society Foundation, she wrote with
8
Luke college enters the UN and right to community living, structural fund and EU obligations on
9
the CRPD that's an accessible document I recommend that you read it. Without further ado I
10
will hand you over to Camilla who will give a fascinating presentation on Article 19 thank you
11
Camilla.
12
MS PARKER: I just hope after all that it is fascinating!
13
14
Thank you very much, we are now going to be talking about something different we have been
15
talking about Article 12 quite a lot, but I think while we are going to be talking about a different
16
article, I think you'll find there are quite a few similar themes that will come out of the
17
discussion, and I think one of the issues that strikes me is that we don't have all the answers by
18
any means to how this is going to work out, and what is wonderful is that we do, what the
19
Convention does is give us a vision of what we're trying to achieve and does set that framework
20
for how we should go about that, but sadly does not give us in anyway all the answers.
21
22
So I'm hoping that there will be some questions about Article 19 in the same sort of level and
23
intensity of Article 12. And I think what's really important is that we should all work together to
24
try and work out how we go about ensuring that people do have the right to live and participate
25
in the community which is what Article 19 is all about.
26
27
Before I start looking at Article 19 I just wanted to explain what I mean by community living,
28
because I tend to use the term rights of community living, which to my mind is, Article 19
29
encapsulates that but the concept of community living has been around far longer than the
30
Convention.
31
32
So this is a description that has been developed by people with disabilities and then as you'll see
33
it was submitted in the European coalition for community living a focus on Article 19. It says
34
people with disabilities are able to live in their local communities as equal citizens with the
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support that they need to participate in every day life. This includes living in their own homes,
2
or with their families, going to work, going to school and taking part in community activities.
3
4
So that's really what community living is about. And as I said Article 19 encapsulate that is
5
concept of community living.
6
7
So what I'm planning to do, I'm going to do it very quickly because I promised Charles I'm going
8
to finish by 3! We'll see how I go! We're going to talk about Article 19 first of all I want to look
9
at that in some detail and thing I want to look at, we've talked about community living, so what
10
does that mean and why does it matter? Why does it matter to all of us? And I think that's a
11
really important point that I want to stress.
12
13
Then I'm going to talk about institutionalisation and then de-institutionalisation, which even for
14
an English speaker that word is difficult to say! But actually it's also even more difficult to do.
15
But within Europe we still have a major problem with huge number of people being placed in
16
institutions, so that is something certainly from the region I come from, it's really important and
17
we need to look at what Article 19 says about that and how it can help us to move from a
18
prevalence of institutionalisation to enabling people to live in the community.
19
20
Then I want to say a little about the myths and misconceptions and some might be very familiar
21
to you in terms of what we talked about in relation to Article 12, but as I said I want to identify a
22
few of those. Then subject to time I want to talk about actions to implement Article 19 and then
23
again I'd like to say a few words about looking forward and really acknowledging the growing in
24
influence of the CRPD generally, but also think about how that might help us to move to ensure
25
that people with disabilities can live and participate in the community.
26
27
So this is Article 19 and in some ways it's very similar to other articles in the Convention, you've
28
got the initial point which is really crucial to say States parties to the convention recognise they
29
wall rights of all persons with disabilities to live in the community with choices equal to others
30
and shall take effective and appropriate measures to facilitate full enjoyment by persons with
31
disabilities of this right and their full inclusion and participation in the community. So that's the
32
right.
33
34
Then the article sets out three areas in which States need to take action in order to ensure that
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people with disabilities can exercise this right.
2
3
So just looking at that in a bit more detail, I think one of the things I want to stress is that the
4
equal right of disabled people to live in the community, with choices equal to others of the this is
5
not something that is unique to people with disabilities, it's saying that we, as part of our -- if you
6
like our human condition is that we live in the community and we participate in community life
7
and what this article is doing is to address the fact that for many people with disabilities this the
8
right that while others take it for granted that they have this right, it's not a right that many
9
people with disabilities can enjoy.
10
11
So this is an important right to all of us. But it's particularly important to people with disabilities
12
because it's a right that is denied to them. So you've got this strong statement about the right and
13
then the Article 19 states what needs to happen in relation to action by State parties to ensure that
14
this right can be fulfilled.
15
16
And what we're looking at is three areas, first of all ensuring that people can have full enjoyment
17
of the right, then full inclusion and participation in the community and therefore I think that's
18
one of the point that is really important to remember, it's not simply, this is something that
19
happens when people talk about institutionalisation, it's not simply about where someone lives,
20
it's about enabling people to live in the community and participate in community life as others
21
do.
22
23
And the three main areas that states need to look at are equal opportunity to choose where and
24
with whom to life and today, this is afternoon is a session that's focusing on choice, so that's
25
obviously of crucial importance to the session, but it's absolutely essential to people being able
26
to enjoy the right to community living.
27
28
Then access to a range of community support services, that's going to be very important to
29
ensure people can live in the community and also participate in the community.
30
31
And then thirdly, equal access to mainstream services so it's not simply about support services,
32
it's saying that people with disabilities should have the right to enjoy services that are available
33
to other non-disabled citizens.
34
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1
Another theme that I think you will think, hopefully the discussion will pick up on, is this idea
2
that when we're looking at the Convention there is this interconnectedness between the articles,
3
that as Rosemarie was saying, you can't just focus on one, say Article 12, it's very much linked
4
to Article 19, so therefore you won't be surprised to hear that I'm saying Article 19 is very much
5
linked it Article 12.
6
7
But there is also other articles, Article 14, the right to liberty, we have been hearing about people
8
being involuntarily admitted into institutions and that means basically they are deprived of their
9
liberty.
10
11
Article 26 talks about the right to habilitation and rehabilitation and that is obviously a crucial in
12
relation to access to the community support services and then access to mainstream services,
13
Article 9 the right which focuses on accessibility services, then that's really crucial to ensuring
14
that people with disabilities can make use of services that are for the whole population.
15
16
Another point that you will often hear in terms of the Convention on rights of persons with
17
disabilities is the fact that there are no new rights in this Convention and that is true. But I think
18
one of the points about Article 19 is that this is the first time that an international human rights
19
treaty has referred to the right to community living.
20
21
There are a UN document and Council of Europe documents that refer to the importance of
22
people with disabilities being able to live and participate in the community, I've given you two
23
examples on the slide, one from the UN, this is from the standard rules on equalisation of
24
opportunities for persons with disabilities. It says persons with disabilities are members of
25
society and have the right to remain within their local communities. They should receive the
26
support they need within ordinary structures of education, health, employment and social
27
services.
28
29
The Council of Europe we've got the European social charter, revised charter in 1996, Article 15
30
talks about the rights of persons with disabilities to independence, social integration and
31
participation in the life of the community. So that's quite a lopping way towards the right to
32
community living.
33
34
And then the disability action plan, encouraging Member States to focus on enhancing
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community living, enabling people with disabilities to live as independently as possible to make
2
choices on how and where they live.
3
4
So just thinking through some of these points. Why does it matter? Well the first thing is if you
5
think why it matters is it's about -- this is who we are, as individuals we need to have somewhere
6
to live, most of us would prefer to have a home rather than just some where to go at night. What
7
we do, work, leisure, who we spend time with, developing friendships, social networks, civic
8
engagement, voting and even standing for election. These are things that most people take for
9
granted, but those people who are not enabled to live in the community and participate in the
10
community do not have this ability. Those people in institutions are isolated, they have not got a
11
choice about where they live, they haven't got an opportunity to work and the idea of them
12
voting is probably something that is a million miles away from those people who are providing
13
so called care in the institutions.
14
15
So this is why it matters because actually this is about us as individuals, as human beings, these
16
are important to all of us.
17
18
A little bit more about why it matters, one of the things about Article 19 is that it really makes
19
very clear about how important all of these aspects of life are to all of us, some of us might
20
choose not to engage with some of them, but together these are the things that make us human,
21
make us part of a society, there is a connection with others that's really, really important.
22
23
And another aspect which again I think was picked up in Article 12 discussions was this
24
realisation that we all need support to realise our aspirations and fulfil our potential, I don't think
25
so there would be one person in this room who would be able to put their hand up and say I did
26
all on my own. We all need support and it's just different types of support, but in order to really
27
fulfil our lives and to achieve what we want to achieve we look to other people to help us and we
28
help them, but that's something that Article 19 really does make, set out in very powerful ways.
29
30
I've got a quote from the former Council of Europe Commissioner for Human Rights, Thomas
31
Hammerberg said Article 19 of the CRPD embodies a positive philosophy which is about
32
enabling people to live their lives to their fullest, within society.
33
34
So turning a little bit more to Article 19 and looking at community living. It has been, for those
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of us working around de-institutionalisation it has been a really important advocacy tool,
2
because what it does is it confirm that is community living is a human right, it's not something
3
that government cans do because they are being nice to us, it's something that we all have a right
4
to as human beings.
5
6
It also underpins policy objectives that certainly within Europe are set out both by the European
7
Union, by the Council of Europe and also by national governments, all talk about the importance
8
of promoting a social inclusion, challenging discrimination.
9
10
This Article 19 is really underpinning all of that and saying yes this is the right way forward, but
11
actually it's a right that governments have to respect, it's not about governments doing a favour
12
to their citizens, this is a right that governments need to ensure people can enjoy.
13
14
And for me what it does, it really highlights the gap between that rhetoric of the policy and the
15
reality. There was a report that came out in 2007, it was De-institutionalisation and Community
16
Living Outcomes and Costs, shortened to DECLOC, which is a lot better, but basically the report
17
was a very powerful one in that it first of all as you will see here, it states that over 1 million
18
people across Europe were in institutions and they looked, tried to get information about
19
facilities that 30 or more people were placed in and they came to a figure of 1.2 was their
20
estimate, but that was probably an underestimate because a number of countries didn't collect
21
that kind of information.
22
23
So you've got the number of people in institutions and then we I'm sure have seen, many of us,
24
or all of us have seen the countless reports about the human rights abuses in institutions, how
25
horrific many of the living conditions are, how people are treated and this is still going on in the
26
21st century. So again Article 19 is really challenging that and saying this is not acceptable.
27
28
And also if you look at research around the institutionalisation and people considering what is
29
the best form of care, so called, this is not, the research and report is saying that is not an
30
acceptable form of care, it's incompatible with the right to community living.
31
32
And then I just given you the next point really to flag up a piece of work that I was involved in,
33
looking at the Structural Funds, European Union money given to governments and the report
34
was highlighting the fact that these monies are being used to maintain institutions rather than
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develop the community based alternatives and we argued that not only was that against EU law,
2
but also against the Convention on the Rights of Persons with Disabilities.
3
4
Now the next slide I'm looking at some of the barriers to community living and again we
5
discussed some, guardianship, there is a huge issue in relation to Article 12 but also a major
6
issue in relation to Article 19 because people who have been appointed guardians can agree to
7
the person who is subject to guardianship to go into institutions, and as we heard this morning in
8
some cases that's not considered to be involuntary admission because the guardian has agreed to
9
the person going into the institution.
10
11
Another barrier to equal choice on living arrangements is in some ways there are very few, if any
12
alternatives to institutionalisation, so the choice, if you can call it that, is either being placed in
13
an institution or being with your family, but the family does not have any support and that is
14
often why the person end up in an institution.
15
16
Another issue that quite often people talk about is the issue around choice and perhaps people
17
choose to go into an institution but I think if there is nothing as an alternative, I don't think that
18
could be then described as a choice.
19
20
There is also issues about people being able to make, being given an opportunity to make a
21
decision and understanding what the alternative is. As I said if there isn’t an alternative then
22
there isn't much of a choice, but also if people are then quite often you hear people well we have
23
an institution but a number of residents want to stay in that institution. Well there might be good
24
reasons for that, because that is perhaps the place that they have known all their lives and they
25
don't -- it's quite scary to move. So that raises issues around ensuring that people know what the
26
alternatives are, have the information in a way they understand and have an opportunity of
27
making real choices so that in itself is a huge issue.
28
29
Moving to access to community services, as I just said many countries lack of community-based
30
services. Then when you start to talk about how to make things different you find the legal and
31
financial structures are huge barriers to developing alternatives. One example might be that
32
those who want to develop the alternatives are non-governmental organisations, but then the law
33
says that they can't provide services. So you then have to start getting into the intricacies of
34
looking at how services are financed and what are the blocks to alternatives being developed.
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1
2
Then the third area that I have been talking about, the equal access to mainstream services, quite
3
often again we heard this morning Elizabeth talking about services not being accessible to people
4
with disabilities, you might also find that people are, the law says people with disabilities can't
5
use the service. So these are issues that would need to be looked at in relation to Article 19, but
6
you can see that they also pick up on other articles in relation to the Convention.
7
8
So I've already mentioned institutionalisation and again thinking through some of the point that
9
have been made about Article 12, and you think that hasn't resonance with Article 19. I think
10
Rosemarie talked about guardianship yesterday, saying guardianship is not mentioned in Article
11
12, institutions aren't mentioned in Article 19. But if you look at the way Article 19 is drafted
12
you will see that although it doesn't say you can't have institutions, an institution is never going
13
to meet the requirements of Article 19.
14
15
And I would say that institutionalisation is an anathema to community living and again I have a
16
quote from the Commissioner for human rights where she said people in many countries are
17
confined to institutions and therefore segregated from the community. In institutions they are at
18
risk of exploitation, violence and abuse. Countless more people with disabilities are physically
19
located in their communities, but barred from meaningful participation in the life of their
20
communities, because either services are not available or communities are organised in ways that
21
exclude them from participation.
22
23
So what do we need to do to address institutionalisation? First of all look at Article 19 and you
24
will see there is a clear obligation to develop community-based alternatives to institutional care.
25
And that's something that other treaty bodies have made comments on, I've mentioned Article 15
26
of the European social charter already, but the Council of Europe, we talked about the need for
27
governments having national strategies and these strategies are necessary in order to work out
28
how you're going to transfer from institutions to the community and ensure former residents can
29
live and participate in the community.
30
31
So that gets me on to some myths and misconceptions, we heard earlier the issues around
32
isolation, this is something that's really important about Article 19 because it is, while it
33
promotes independence it in no way is it about isolation. If you look at Article 19, yes it's about
34
people living in the community, but it's also about enabling people to participate in community
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life and that's a real, must happen under Article 19, it's not about placing people in communities
2
that they are unfamiliar with and not giving them any support to engage in community life.
3
4
And then the next bit is it's not just about the physical environment, and this is something that I
5
think sometimes debates around de-institutionalisation we find that taking up a huge amount of
6
time talking about well the size of the facilities, is it a 50 bed unit okay? And this, it is important
7
to think about the number of people living together, but it's actually a enabling people to live
8
together when they have chosen who they want to live with and also enabling people who are in
9
the community to then think about what services that they might need to support them going to
10
work, engaging in leisure activities and do the things all of us expect to be able to do as part of
11
our day-to-day life.
12
13
So this is something, a point that was made by the, there is a committee in the UK the
14
government joint committee on human rights, it looked at Article 19 the report was published
15
last year and you will see the nature of support is key, does it enable the person to live the life
16
that they choose and to be included in their community? That is the issue that needs to be looked
17
at, not let's have a debate about how big or small the facility is to be.
18
19
And de-institutionalisation is only a factor, again I'm in danger of repeating myself, but the
20
fundamental rights social published its report on independent living having talked to quite at few
21
people about independent living and it's report commented on issues saying for persons to have
22
choice and control over their lives they should be for example allowed to vote in elections and
23
stand for public office, facilitate to work through reasonable adjustments in the workplace and
24
allowed to enter legally binding contracts.
25
26
So you can see that Article 19 is far broader than where a person lives, you can also see how it
27
connects with other aspects of the Convention.
28
29
So thinking about the implementation of Article 19. So first of all it states a State needs to
30
recognise the right of people with disabilities to live in the community. Then they need to take
31
effective and appropriate measures to facilitate this full enjoyment of the right with choices equal
32
to others and also need to take effective and appropriate measures to facilitate people with
33
disabilities full participation and inclusion in the community.
34
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Again linking this to other aspects of the Convention, raising awareness about the Convention,
2
which is something that Article 8 talks about. We need to think about what is the Convention, is
3
it translated into the national language, do people understand the rights that are set out in the
4
Convention?
5
6
When we're thinking about taking action to implement Article 19 how are we engaging with
7
people with disabilities, what are government doing to ensure that that involvement is really
8
rather than something that's part of a tick box concept.
9
10
We need to look at the national laws as I was saying there could be legal barriers to the move
11
from institutionalisation to community based services, we need to look at what laws might be
12
provided to set up a barrier and we also need to ensure again that that review involves people
13
with disabilities.
14
15
And then look at national monitoring, that's going to be looked at tomorrow, but that again is
16
going to be something that will be very important in relation to ensuring that Article 19 is being
17
implemented, that people with disabilities -- how are these being monitored, are people with
18
disabilities being involved in that monitoring process?
19
20
Then just to move on to the concept of progressive realisation and I think sometimes I happen to
21
think this is a really, really important and crucial concept, but quite often I feel that people think
22
it's a weak point. What I would say is that when we're looking at the Convention and there is a
23
debate about civil and political rights, economic and cultural rights and how they might differ,
24
when you look at these different articles you will see a lot of them, Article 19 I would say is one
25
of them, where these rights are contained in one article.
26
27
And what's important to my mind is to say there will be some rights that very few States have
28
achieved, and I think Article 19 is one of them. And what is important is that States are taking
29
very clear, concrete action to realise the particular right, and that is not an excuse to do nothing.
30
I think that's where it's really important. What progressive realise sayings is doing is recognising
31
that some rights may take some time to realise fully and some States may have more resources
32
than others, so it's recognising that these needs to be looked at in a country specific way. But,
33
whatever the state of the resources, what needs to happen is first of all say the recognition of the
34
right to community living and then an action plan to show what the State is doing and when its
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going to do it, and how its going to ensure that it keeps within the timetable to move forward to
2
achieve this or realise this right to Article 19, right to community living.
3
4
So lack of resources is not an excuse, all States should be showing what they are doing to realise
5
Article 19. And they need to move as quickly and as effectively as they can and that's where
6
issues such as Article 33, the monitoring of the implementation. CRPD is going to be so
7
important and again engaging people with disability who is are saying to governments okay,
8
here's Article 19 this is what we should be aiming for, we need to ensure that you are moving as
9
quickly as you can towards that, and we'll keep an eye you and we'll want to be involved in what
10
we're doing, what policies and legislation you're developing, services you're developing and we'll
11
ensure that you are moving towards this goal in a proper and effective way.
12
13
In the mean time also there are certain things that States cannot do and that's the progressive
14
realisation does not allow discrimination so the right to protection from discrimination takes
15
immediate effect.
16
17
It is a powerful tool and can be used effectively in these kind of rights when there is a
18
recognition that it will take some time to achieve the common goal and this is particularly
19
important when you're talking about countries where the predominant form of care is in
20
institutions so we need to ensure that there is positive action to move from institutionalisation to
21
the development of, and realisation of services in the community.
22
23
So -- I've got five minutes -- thinking about action to promote community living you need
24
explicit recognition of that right, we need concrete and targeted action, looking at areas of
25
non-compliance, how you're going to address that, show how and when required action is going
26
to be taken, a community living plan is really setting out how the government is going to work
27
together closing institutions and having community based alternatives.
28
29
And then as I said the establishment for participation is going to be crucial to this process. And
30
I've got here additional funding, it goes back to progressive realisation, so a recognition that
31
some States will have less resources than others, but it is as in some of the EU countries,
32
Member States, have access to additional funding then they should be using that to develop
33
community based services and if they use money to maintain the institutions that to my mind
34
going completely against the CRPD in any event, but it also is regressive and what we talk about
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progressive realisation moving towards a goal, using additional money to maintain institutions is
2
going against that move forward to the goal and therefore that is why, one of the reasons why I
3
would say the use of Structural Funds to maintain institutions is contrary to the CRPD.
4
5
So there has been a number, quite a bit of work around how can we help governments to move
6
towards community based services, given I've got very little time, I recognise if you are
7
interested do have a look at common European guidelines in the commission at the end of last
8
year that set out various areas that governments should be looking at to ensure that they are
9
moving from institutional care to community based services.
10
11
For example one chapter looks at making the case for developing community based alternatives,
12
so that's setting out why governments need to take this shift from institutional care to community
13
based services, so the prevalence, we've got the, if the policies all say about social inclusion, so
14
they have all signed up to this as a concept so they should be working towards achieving social
15
inclusion. I've mentioned human rights violation, but also there is a huge amount of research
16
that shows how damaging institutionalisation is to not only children but also to adults, and quite
17
frankly if governments need any more reasons to persuade them to move from institutions to
18
community based services it's actually a better use of resources to enable people to live and
19
participate in a community.
20
21
The next slide I'm going to skip, it's just again work I was involved in for the Open Society
22
Mental Health Initiative, a check-list for Article 19, things that need to be looked at when
23
making that transition from institutions to community based services.
24
25
And I've set out the importance in developing a national strategy that's going to be key, but again
26
I would emphasise that needs to be developed with people with disabilities as well as
27
professionals who are looking at what kind of services that have to be negotiated and discussed
28
with people with disabilities. Lawyers will need to be involved in terms of looking at the
29
development of legal framework, people who know about financing will need to be involved, so
30
it's quite a complex process, so starting off with a national strategy and thinking what you want
31
to achieve and how you go about achieving that is really important but it is essential that that is
32
developed with people with disabilities.
33
34
And this slide is also talking about the review of legislation, which for the sake of keeping time I
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will skip.
2
3
Just finally the last two slides I just wanted to mention that we focus on the Convention on the
4
Rights of Persons with Disabilities which is absolutely right, but I thought you'd be interested to
5
be aware that this really is beginning to have an influence in, I'm based in England, and there are
6
a number of cases that the courts are being asked to look at the CRPD when interpreting the
7
European Convention on Human Rights, there have been a couple of cases in which the courts in
8
England have done that and made important comments about the recognising the status of the
9
CRPD.
10
11
And there was a crucial case before the European Court of Human Rights; Glor and Switzerland
12
in 2009 when the court talked about the Convention and talked about the importance and you'll
13
see it said there is a European and worldwide consensus on the need to protect people with
14
disabilities from discriminatory treatment. And then referred to the CRPD.
15
16
So it's gaining ground and I think when we're looking at it, it's really helpful to start looking at
17
how other courts and other jurisdictions are looking at the CRPD and seeing how influential it is
18
and seeing how it should aid their interpretation of their domestic law or in the case of the
19
European Court, the European Convention.
20
21
That leads me to the final slide there was a really very important case in 2012 in Stanev and
22
Bulgaria, involving a man placed in a social care home and, it was an appalling institution the
23
committee on prevention of torture had already been there and said how appalling the conditions
24
were and very little, if nothing had been done to address those.
25
26
The court found that Mr Stanev's right to Article 5 had been breached also that he had his right,
27
Article 3 is the freedom from torture and inhuman degrading treatment and punishment, his right
28
under Article 3 had been violated and also article 6 the right to a fair trial had been violated.
29
30
What the court did not do was look at Article 8, Article 8 is really important under the European
31
Convention, the right to private and family life. An the court felt that the issues that Mr Stanev
32
had raised in relation to Article 8 it felt that the issues had been adequately covered when it
33
looked at these other rights which I have just said the court held to be violated. But I think that's
34
a real shame because I think there is a great connection between Article 8 of the European
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Convention right to family and private life, and also the fact that people are still being placed in
2
institutions, often because there are insufficient alternatives.
3
4
And this is a minority I have a quote from the partly dissenting opinion the judges agreed with
5
the other violations but said they felt that Article 8 should have been looked at because it did
6
raise additional issues that weren't covered under the other articles that had been held by the
7
court to be violated and I'm an optimist so I'm hoping this might be a little door beginning to be
8
opened where the European Court might start to look at issues relating to community living and
9
start looking at Article 19.
10
11
You'll see what the two judges said, considered the case raised separate Article 8 issues having
12
to live in the Pastra social care home had effectively barred him from taking part in community
13
life and developing relations with persons of his choosing much the authorities had not
14
attempted to find alternative therapeutic solutions in the community or to take measure that is
15
were less restrictive of his personal liberty with the result that he had developed
16
institutionalisation syndrome, that is the loss of social skills and individual personality traits.
17
18
It seemed to me that, as I said, I am an optimist and I really do hope if these cases come to the
19
European Court in the future, the whole of the court will start to look at these issues, because this
20
is what it's about. It's about people being denied their rights to community living. And I hope
21
that I've covered enough to perhaps have some discussion later. But I think I need to finish. So
22
thank you very much.
23
CHAIR: Thanks very much for that Camilla and it was indeed a fascinating presentation. Our
24
next speaker is eve hill. And eve is going to speak about case studies, she is going to look at the
25
role of the US Department of Justice in enforcing the right to community living in the US and
26
eve is in a very good position to talk about this topic given that she works for the Department of
27
Justice in the US, she is a senior counsellor to the assistant Attorney General for civil rights in
28
the US Department of Justice, and the thing about eve is she has a huge background in disability
29
rights, she worked in a law firm specialising in disability rights before she took up her current
30
post and prior to that as well she worked for the Burton Blatt Institute as senior vice president of
31
the Burton Blatt Institute in the university of Syracuse, so she is in a great position to talk about
32
case studies so I'll ask her to address you, thank you.
33
MS HILL: Thank you all, I periodically have to say I know my little Bio has so many jobs on it
34
that it kind of indicates I can't keep a job but this is not true, I am just immensely curious, I want
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to do everything, and I'm going to, you can't stop me!
2
3
So in the US as in many countries our tradition was to take children and adults with disabilities
4
away from their families and place them in institutions and these institutions got larger and
5
larger and larger and the theory there was that you could get specialised treatment for people this
6
these institutions that you wouldn't be able to get in the community, and that view is
7
disappearing in the you have the US.
8
9
The US Department of Justice's role is to enforce the federal civil rights laws, including the
10
Americans with Disabilities Act of 1990 and in the area of integration and community living
11
rights, our focus is on systemic cases, so what we look at is the systems of State or local
12
governments that are leaving people into institutional settings.
13
14
This grew out of what we call the Civil Rights of Institutionalised Persons Act, that law was
15
intended to make sure that the conditions in institutions were not constitutionally bad, that they
16
were not horrible institutions and we would go into an institution and make it better.
17
18
At the beginning of our looking at how we could focus more on de-institutionalisation and
19
community living we started asking the question, not how bad is this institution, but why are
20
these people here? Should these people be in an institution or should they be in the community,
21
could they be served in the community.
22
23
That brought to us looking at institutions but whole State systems to see whether they were over
24
relying on institutional care for people with disabilities and rather than providing community
25
services that would allow people to be in their communities, so for us we have to be very careful
26
about talking, not just about closing institutions, but about providing community services.
27
28
Because our law, as I'll talk about a little later, focuses on community living and the most
29
integrated setting, it could be used to just to close institutions but we've had several States that
30
took that approach, okay we closed the institutions, everyone's out. Without providing a
31
community services on the outside that would enable people to actually live in their
32
communities, so people fell into homelessness, people fell into horrible poverty, people fell into
33
lack of services, fell into emergency rooms and they fell into losing their lives.
34
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1
So learning from that we now always, always make very clear that our work is not about closing
2
the institutions, it's about stopping people from entering them unnecessarily and it's about getting
3
people out and providing the community services that they need to actually live successfully in
4
their communities.
5
6
But we're not the only enforcer of this law, you have probably heard the US is a very litigative
7
society, it's a little better than beating each other with clubs, but we use litigation as a tool.
8
9
So individuals also have the right to bring their open cases to challenge either their
10
institutionalisation or having been placed at risk of having to go into an institution and those
11
claims can be made on behalf of a class of people with disabilities.
12
13
So a class of people with mental illness who are being put at risk of entering an institution or
14
class of people with intellectual and developmental disabilities at risk of entering an institution
15
or a class of people who are actually in institutions.
16
17
So we don't do every single case, we don't do those cases but we also file amicus briefs in private
18
litigation for either individuals or classes of people and we intervene in private litigation to
19
support those classes of people as they seek systemic change to get those re balancing of
20
resources to allow community services.
21
22
So we have also been looking at what were the basis of these approaches to institutionalisation?
23
Because I have to be able to take people where they are, and understand that at least they will say
24
that their reasons for placing people in institutions were not evil, they had a fear of contagion so
25
we have institutions for leprosy, whole islands for leprosy, institutions for TB, for the inability
26
for families to provide adequate care, the lack of specialised care in the community, the more
27
serious health needs than the general doctors in the community could deal with.
28
29
Protection from community bias, so many students in blind schools or in deaf schools would say
30
we were bullied, we were tortured, we were made fun of in the general school so we needed
31
these particular schools in order to protect us from the cruelty of people without disabilities, or a
32
need for specialised training, it was harder to provide training in Braille or training in American
33
sign language in an otherwise school full of non-disabled children and it was easier if you
34
brought those people together and taught them all there.
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1
2
Cost concerns was another one. Wouldn't it be cheaper to just serve people in this institution
3
where we wouldn't have to travel all around. And just plain discrimination, out of sight out of
4
mind, we don't want to deal, place people away, we're afraid of people with disabilities and so
5
forth, so all those things have under lane the decisions to do this but things have changed a lot.
6
7
So because we provide a lot of the funding for both institutional and community services through
8
public funding mechanisms, those funding mechanisms have now noticed that institutions are
9
very expensive, very expensive and they give up the ability to rely on natural supports, family
10
supports, peer supports, friend and so forth and the infrastructures of regular schools or medical
11
care that exist in the community and they have taken that all on and are now paying through the
12
public funding system it is.
13
14
They have also noticed that a great deal of care people didn't need was being provided. So you
15
would get a visit from a podiatrist every week whether you needed it or not and that would be
16
billed for. So a lot of ways to game the system and increase these costs.
17
18
Then decreases in transportation costs and increases in the speed of transportation made it much
19
easier to serve people where they were, where ever they were. Rather than having to bring them
20
together to meet their service providers.
21
22
Improvements in education made it much more possible to teach kids with disabilities in a
23
regular school, simply by providing extra support or changes in the way the education was
24
distributed and improved healthcare and improved understanding of disability made us realise
25
no, this is not a character flaw or something that is immutable that we can actually provide care
26
and treatment that helps people move forward.
27
28
Then the abuses, numbers of underground reporters who would go in and show the real
29
conditions, the real horrible conditions at many of our institutions shocked the conscience and
30
woke people up to say no, we can't let this happen. And we have also been able to make clear
31
that it is that segregation and that idea of out of sight out of mind that makes that kind of abuse
32
possible.
33
34
So we don't want anything to lead back to that. But fundamentally as the ADA and other earlier
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civil rights laws have come into effect people without disability are meeting people with
2
disabilities, seeing them in their every day lives, and stopped thinking so much of them as the
3
other, as completely different from me, as completely unable to participate in society. So we've
4
stopped, we've started recognising that people with disabilities are people. I know, this should
5
not be startling but it was a startling recognition.
6
7
I would actually give credit to this not to the Americans with Disabilities Act, but to the
8
individuals with disabilities Education Act first, that happened in the 1970s, public education
9
start to require students with disabilities to get a free appropriate public education in the least
10
restrictive environment, that was appropriate to that. So students with disabilities were no longer
11
put on the little yellow bus, in our country it's a little yellow bus, taken to a special school and
12
not seen again until they got home, if they got home.
13
14
Public education started to struggle with bringing students with all kind of disabilities into the
15
regular classroom, or at least into the regular gym, lunch, recreation and so forth. And as part of
16
that, both their other students in the class and their parents started to have higher expectations of
17
integration after they would leave school.
18
19
So now the students will get to the age of 18 and think I'm about to graduate and their parent will
20
say yes you are, what are you going to do next? With the whole panoply of possibilities open to
21
them and they were shocked and mad when that whole panoply of possibilities was not open to
22
their parents and got very good at advocating for not sending their now adult children into
23
institutions, not sending their adult children to special systems but making the general systems
24
that everyone else had special and responsive and able to accommodate people with disabilities.
25
26
So the ADA in particular passed in 1990 has a provision called integration mandate and that says
27
that covered entities like State and local governments, have to administer all their services
28
programmes and activities into the most integrated setting appropriate for each person with a
29
disability. The basic example of that at the time was that if you had a programme for everyone,
30
and an example is a museum tour, you couldn't keep people with disabilities out of it, in fact you
31
couldn't even keep people with disabilities out it have if you had a special tour just for them, a
32
touch tour where blind people would be able to touch exhibits. You can have that but you
33
couldn't make them go to it. And combined with the requirement for reasonable
34
accommodations and reasonable modifications to the regular tour you might need to make
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people touch thing in the regular tour, you need to make accommodations to make the regular
2
tour accessible for people with disabilities.
3
4
So together with that you can't say we have to go to the special tour, you have to accommodate
5
us in the regular tour, we start to get this idea that maybe we don't need special things for
6
everything. We can bring people into our main stream in pieces of society.
7
8
So in 1999 the US Supreme Court, our highest court took up a called Olmstead versus LC, that
9
case arose out of Georgia, involving two women with mental health concerns and mental
10
disability admitted to a state institution in Georgia, and their doctors had said after a period of
11
time that they no longer needed to be in that hospital. Despite that, they were stuck there for
12
years after their doctor said no they can go back to the community with some supports.
13
14
Because the state simply didn't offer enough supports to support them in their communities, and
15
the stream court said unnecessary segregation of people with disabilities is discrimination in
16
violation of the ADA's integration mandate. That was a big deal.
17
18
The court found that segregation is harmful. Now our brown versus board of education case in
19
the race context in schools had said separate but equal is not equal. And is a violation of our
20
civil rights laws. The same concept was brought into our disability rights law.
21
22
Segregation is harmful, in and of itself, because it continues and validates incorrect assumptions
23
that people with disabilities are not worthy, are not capable of participating in their communities,
24
and in the sort of vicious cycle, it prevents them participating in their communities.
25
26
It also found states have an obligation to provide their services and programmes in the most
27
integrated setting that the person with a disability needs. With the services a person with a
28
disability needs.
29
30
So the framework of our law is you have institutional services and community based services.
31
When you have those both you need to make the community based services available to people
32
with disabilities. But what's the programme here, in this case you've got people getting what
33
kind of services in the institution, in the psychiatric hospital? Anybody? Scream it out you I'll
34
repeat you. Developmental disability services, mental health services? No, bigger. Health
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services.
2
3
So the way you need to think about it is there's a system for everybody and there's a system for
4
people with disabilities. And if there is two systems the people with disabilities have to have
5
access to the main system and that system needs to accommodate them.
6
7
So nobody without a disability has to go in an institution permanently in order to get the
8
healthcare services that they need. But people with mental health conditions and people with
9
developmental disabilities had to go to a special system to get the services they need. Separated
10
off from the rest of the world. So when you're looking at our approach to community living
11
you're looking at making the system that everybody else gets access to, accommodate what
12
people with disabilities needs instead of creating a separate system for them.
13
14
You also have to look at whether there is something magical about the group system, the
15
segregated system. Are the services provided there available or could they be provided in the
16
community based setting? But there's something magical about the group base, about having a
17
group of people with disabilities together, if that's therapeutic, if that's part of what makes this
18
programme work for people, then you have a little more trouble saying they should be in this
19
non group system.
20
21
So this comes up for us periodically when you're talking about substance abuse treatment,
22
alcoholism treatment because there are some argument, I'm not going to say whether they are
23
right or wrong, but some arguments that say the ability to interact with people whole are
24
struggling with the same substance abuse addictions or alcohol addictions that you have is part
25
of the therapy, at least for a period of time. So those systems will argue that being together with
26
others with this kind of disability is part of the therapy. But there isn't anything about being
27
served as a group of people with developmental disabilities or a group of people with mental
28
health concerns that makes that therapeutic, the grouping of the system is not therapeutic, it
29
could be done in the community.
30
31
So what the Supreme Court said is they laid out our little analysis, the analysis that we fit, the
32
framework they fit every time. You need to serve people in the most integrated setting if, 1, the
33
people with disabilities don't oppose integration. Now note this does not require that they
34
choose integration, why are we not requiring this Hmm to choose integration? You all know
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this, I know you do, we talked about it earlier. The Fox in the hen house, is that a phrase in your
2
country? The Fox is guarding the hen house. The service providers who gets paid for providing
3
the institutional services is going to be the one who comes in and asks you, do you want to
4
leave? And you're going to go, no, no, I would never leave, you're fabulous, please don't do
5
anything terrible to me, please don't take my services away. They are not going to describe to
6
you how great the services outside could be that they are not going to get paid to provide. So
7
you have a Fox in the hen house problem.
8
9
People with disabilities in the institutions have never been asked. They don't know what the
10
other options are. They don't know that you can get all these services in your home, or in your
11
community. So giving them a choice between here's what you know and some kind of stuff that
12
we're not really going to describe to you that you don't know, where are you going to choose?
13
I'll stay here thank you very much.
14
15
And then the importance of informed choice, we in our settlement agreements always require in
16
reach and outreach. And we require people who are nonverbal to have all the options available
17
to them to express a choice. It can't just be well he doesn't know how to say yes or no so we're
18
going to assume he'll want to stay here.
19
20
And making the community basis services the default means you're more like three get to the
21
tipping point where we believe community based services work. For too long the institutional
22
services have been the default, you go here unless you can prove that you would be better off in
23
the community. Now it's going to be you go into the community unless you want to and you can
24
demonstrate why, and this is a choice problem that we have been discussing all day, unless you
25
can say I want to live here in this institution.
26
27
So the second piece of the analysis is that the integrated services are appropriate, that there is
28
nothing magical about the group services for this population, and it's possible to do them in the
29
community.
30
31
Then the third piece is that the state or the other entity can accomplish the integration by
32
reasonable modification of its current services without causing a fundamental alteration. So this
33
is progressive realisation. This is where you have to show, where the state can say yes but we're
34
so far from being able to do that service that we need more time, or if we paid for that service for
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that person it would bankrupt our system and we would no longer be able to serve lots of other
2
people, so that's a catalyst that we always have to look at.
3
4
That would be one of the things people ask us all the time why didn't you to the worst state, why
5
didn't you go to a state where everybody is in an institution and the answer is that state doesn't
6
have any infrastructure for community based services, they would have a better argument that it
7
would fundamentally alter their system or they would not be able to serve the rest of the people
8
by shifting the money around.
9
10
We however say it's just a fundamental alteration or undue burden, it doesn't have to be neutral
11
price. It can cost more to serve in the community, that's okay, it just can't cost outrageously
12
more to serve people in the community, the State still has to do it.
13
14
But this does set up a sort of individual rights versus group rights model, it's kind of an issue
15
where you're going to say what if the first person who signs up to get out is also the one who
16
requires the most services and would undermine the ability to provide services for a lot more
17
people so states -- we do all the systemic work -- get to think about rolling out their community
18
services in ways that can get lots of people into the community allowing them cut back on their
19
expenses on the institutional services and then rollout the more expensive to serve people a little
20
later. I don't always recommend that's the approach to take but they can take that argument.
21
22
This also makes a little hard tore bring an individual Olmstead case, because you're always
23
looking at the individual in terms of how much of the resources is this person going to use that
24
would undermine the ability to serve the rest of the people, but this is not an uncommon thing,
25
even in basic cases like sign language interpreters in our system if a court has a budget for sign
26
language interpreters and one person is going to come near the end of the budget year and need
27
to be every day at a six-month trial, the court gets to consider that that request in terms of the
28
entire budget and my recommendation would be to them, you're near the end of the fiscal year,
29
push the trial to the beginning of the next fiscal year then you'll have a full budget and you can
30
use that. But those are the kind of balances that come up when we talk about a reasonable
31
accommodation, undue burden and fundamental alteration.
32
33
It's also hard to bring individual cases and group cases because we have some, what's the word,
34
daft, I'm going to use daft, that's my new, I love the word, our new daft approach to class action
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suits. I'm not going to get far into that but there are limits on when you can use a class action
2
suit and that's inhibiting people's ability to bring group cases in the US.
3
4
Luckily we have been able to show and all the research everywhere shows this, community
5
services are less expensive in general than institutional services. So we get to show oh look at
6
all the services they provide here that are paid for by the state, that people don't really need, and
7
in the community they'll only get the ones they do need, we get to look at the price inflation in
8
institutions, we get to look at the fact that the institution has taken over the housing, and so they
9
are paying way extra for housing that usually a family member or housing providers would
10
handle.
11
12
We have been able to say you are also taking over other aspects where the person might have
13
natural supports, friends and family and peers and non-profits who provide these supports. So
14
the costs won't just have to distribute evenly, you can save money in the community based
15
system where you're spending a lot of money in the institutional system.
16
SPEAKER: What is daft?
17
MS HILL: Daft, crazy, stupid.
18
SPEAKER: We're certainly not that.
19
MS HILL: You're not, but some of my states are!
20
21
So Georgia was this first case, the Olmstead case in the Supreme Court in 1999 so we show up
22
in 2009 and look at Georgia and nothing changed so unfortunately Georgia was our first case
23
and in 2010 we reached a settlement with Georgia which operated a system of state hospitals
24
where they sent people with developmental and intellectual disabilities and people with mental
25
illness and that case in the next ten years or so, they will transfer approximately 9,000 people out
26
of those institutions and into community based settings and they will get community based
27
settings that range from family homes, to scattered site apartments to up to group homes with up
28
to four people in them. And they get to help choose the people.
29
30
They will also get the community services to surround them, not only their individual support
31
services, but crisis teams, so when you get a crisis you don't have to go back into the hospital to
32
get those services.
33
34
For mental health it's much more individual apartments, they all have what we call ACT teams,
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Assertive Community Treatment teams. They will have respite locations so they can get away
2
from their families, it happens! And they will have a great deal of case management build around
3
them to help make sure they can get stabilised, get the services they need, that when things
4
change they can be responded to instead of having the default when things change you go back
5
to the hospital.
6
7
And then a lot of, a great deal of crisis apartments and very robust system to help people manage
8
a crisis and get back to their own lives in their communities without ever having to give up any
9
of that. Sometimes that's the big piece, you have an emergency, you have a crisis, the only place
10
for to you go is to a psychiatric hospital and while you're there you lose your home, you lose
11
your connection with your friend, you lose all these things that make community life possible.
12
So we're trying to make sure that doesn't happen any more.
13
14
And then quality assurance, one of the things we hear from parent all the time, particularly
15
parents who placed their children with no other choices, in a state hospital is they're safe there.
16
They're safe there. And they won't be safe in the community. So there is a very serious set of
17
quality management, quality checks to make sure that the services that are being provided in the
18
community are good, are safe and are encouraging of real integration, not you're in a one
19
bedroom apartment by yourself, you are left alone, find your own way in the community.
20
21
That's hard, as I was talking to someone yesterday, to find your way in a community that you
22
have been excluded from for some time.
23
24
Similarly in Delaware, a very small state, in 2011 we addressed state psychiatric hospitals and
25
getting 3,000 people out of those hospitals and getting them the separate services that they need.
26
In addition we addressed at risk people and I'll talk a little more about at risk.
27
28
In Virginia we addressed state funding training centres and that will address 5,000 people
29
moving out of and staying out of those training centres. Time flies!
30
31
So the complexities, the thing we always have to worry about is in fact it costs a little more to
32
operate two systems at the same time, you've still got people in the institutions and you're
33
supporting them in the community, it's not a one-to-one always shifts of the money, usually it's
34
less than one goes out into the community, but nonetheless you are operating an institution with
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fewer beds but still costs as much while shifting people into the community so we always have
2
you to watch out for that.
3
4
But in the US our public medical funding provides a right to those community services. It does
5
have an institutional bias, the basic right is institutional services an they have a set of waivers to
6
allow you place people into the community at no more than the cost of placing them in the
7
institutions. So we still have to work on the federal level with the institutional bias in the public
8
funding systems.
9
10
11
The other concern we always have is the woodwork effect, people will come out of the
12
woodwork if they no longer have to face the spectre of going into the institution, people going
13
without services or relying on their families will now sign up for public services because they'll
14
know they can get them in the community. It hasn't happened, it was a big scary story that
15
people were telling each other and it hasn't happened. So that hasn't affected the cost issues.
16
17
So some of the complexities, Olmstead was decided in the context of a state operated facility,
18
Virginia was state operated, Delaware was state operated facilities, so the first argument was
19
what about the states that just fund the facilities, they are privately operated but the state doesn't
20
own or operate them, but we have made clear now that those are covered too because the ADA
21
says the state has to administer it's services in the most integrated setting, so by providing
22
funding and licensing and referrals they are administering the system even if they don't operate
23
the actual facilities themselves, this comes up for nursing homes, it comes up for some facilities
24
with people with intellectual and developmental disabilities, it comes up for some people with
25
mental health conditions.
26
27
So we have gone that far. There has to be some level of funding and some level of control more
28
than funding in order to make that public entity on the hook for that system, and North Carolina
29
was our first case to really deal with that exclusively because those were what were called adult
30
care homes for people with mental illness, they would put people in these large, very
31
institutional adult care homes but they were privately run. And thought well we're in the on the
32
hook for that one, but they are on the hook for that one.
33
34
And our agreement in North Carolina, 3,000 individuals will be removed from those adult care
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homes and provided the option to participate in integrated, scattered site homes of their own with
2
tenancy rights.
3
4
The other thing is we talked about the states hook on it, but there are also some hooks on private
5
entities. The title 3 of the ADA covers private entities and they also have an integration
6
mandate, so if a nursing home is for example segregating people with a certain kind of disability
7
on a given floor or if an apartment building is segregating people with mental illness on a given
8
floor, they can be also on the hook under the integration mandate.
9
10
The ADA doesn't really cover housing, but it does cover services, so they allow the services only
11
on that floor, they provide the services only on that floor, that's considered segregation within
12
private healthcare, particularly for nursing services and other social services systems, think about
13
employment systems where there might be an integrated piece of the employment services, these
14
are where we help people without disabilities write their resumes and look for jobs and so forth,
15
and then there is another room where the people with disabilities sit and put little pieces of things
16
together and move buttons from one box to another and we call that job training and those will
17
be segregated, so that would also violate the Olmstead contention by that private entity.
18
19
So this has all been in the context, it started in the context of health services in a residential
20
setting. These were places where people both got their services and lived. But that's not the
21
limit of the ADA either, the ADA says all of the covered entities programmes, services and
22
activities have been administered in the most integrated environment. So what other kinds of
23
services might raise integration issues, what else do states or cities provide that might be either
24
segregated or integrated?
25
SPEAKER: Public transportation.
26
MS HILL: Transportation yes. What else?
27
SPEAKER: Education.
28
MS HILL: Education absolutely, IDEA calls for people to be served in the least restrictive
29
environment that's appropriate for them, absolutely when you see as I recently did in the state of
30
Rhode Island a completely segregated school for kids with intellectual and developmental
31
disabilities that looks like segregation to me, that would violate the Olmstead principles and
32
IDEA requirements. What else?
33
SPEAKER: Sports. Because I often find there is a lot of isolation in sports, there is segregation.
34
As a ritual you have annual sporting events for disabled.
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MS HILL: Don't get me in trouble with the Paralympics.
2
SPEAKER: That is also troublesome I have now reservations, it is also a ritual, you know how
3
much hype it gets in the media.
4
MS HILL: Exactly, but Special Olympics. I don't want to get in trouble with any of them, but
5
yes, all issues you should look at and special programmes, a community park may have a
6
basketball programme and a wheelchair basketball programme and the integration mandate
7
makes clear that you can't make the wheelchair user participate in the wheelchair programme,
8
they have to be able to participate in the non wheelchair programme and they may win or lose
9
and that's their choice. Swimming classes, all those things, people have to have the option to be
10
in the regular programme with reasonable accommodations.
11
12
What about prison? So we have cases where within a prison the individuals with HIV are
13
segregated to a separate programme in a separate dorm with limited options to have the extra
14
work programme that is can get them out. We have people who are deaf segregated within
15
prison and that looks like an integration mandate issue as well.
16
17
What about social services, homeless services where they have one that's all for the people who
18
they know have mental illness, they only have one shelter that's accessible to people who use
19
wheelchairs or who need medication.
20
21
What about, this is my personal favourite, employment services and day activities. So for us in
22
the US we have employment services and we are trying to help people with disabilities get jobs,
23
prepare for jobs, go into jobs and work in jobs. Unfortunately too many of these programmes
24
are offered in what are called sheltered workshops, everybody know what a sheltered workshop
25
is? Yeah, so we just last week issued...
26
SPEAKER: Services for battered women.
27
MS HILL: Absolutely so some of the shelters will be accessible, some will provide, but they
28
won't be the ones that provide sign language interpreters so you have a special one, or non for
29
women who are deaf. There is all kind of ways that those are divided up. All the social services
30
can end up in this way.
31
32
So talking a little about employment supports, we have systems that provide employment
33
support that is are intended or were intended to get people jobs, to get people with disabilities
34
ready for jobs, most of these are either for people with intellectual and developmental
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disabilities, mental health conditions, some for people who are blind, some for people who are
2
deaf.
3
4
So our case last week was in the state of Rhode Island, a small state, and I dealt with a large
5
sheltered workshop, it had about 100 people in it, those people stayed between 15 and 30 years,
6
so if there were a training programme as many of them claim to be, the training's not very good
7
since people never leave to go to whatever they were being trained for.
8
9
If you look at the types of work they were doing, they were gluing pieces of jewellery together
10
or cutting chords and a variety of things most people don't do in a real job in the real world, or
11
they were literally moving buttons from one box to another, divided based on size. Shockingly
12
those buttons were dumped back into the original box at the end of the day to be resorted again
13
the next day.
14
15
So in this adult sheltered workshop where people stayed for a very long time, they did piecework
16
and manual labour, and they also had a day programme, so you were supposed to be getting skill
17
building, social skill building training when you're not working, so guess what the day
18
programme was? When you are not working.
19
SPEAKER: Watching television.
20
MS HILL: Watching television, playing cards, colouring, all incredibly useful skills if you are
21
going to socialise in kindergarten.
22
23
So not accomplishing the purpose, completely segregated in a very removed location, so you
24
couldn't even leave the, not that you could leave the facility, but if you were allowed to leave
25
there would be nowhere to go to interact with people without disabilities.
26
27
And then we found, they were also serious health code violations and those people were being
28
under paid. Now in the US the Fair Labour Standards Act allows people with disabilities to be
29
paid below the minimum wage if the productivity doesn't match the productivity of an
30
experienced person without a disability, I'm not going to comment on that either, but they were
31
not even being paid properly under that rule, so they are being paid as low as 14 cents an hour,
32
you can't make a living on that.
33
34
Then we discovered a workshop in a high school, and students from ageing 14 to 21, about 85
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students were being prepared for adult sheltered work by doing sheltered work, in fact
2
subcontracts for that sheltered workshop in the school for one to two hours a day every day.
3
They were also under paid or not paid and also did the same kind of manual labour and button
4
sorting.
5
6
So we're going to take the 200 people there, those workshops will be closed, those workshops
7
have been closed. And the 200 people there will now get supported employment which is
8
supports in a regular job at or above minimum wage pay, for an average of 20 hours a week, any
9
time they are not working they will have integrated day services, not cards and not colouring,
10
things like movies and the gym and grocery shopping and the things that the rest of us would do
11
in our regular day. And the total of work and non-work will add up to 40-hours a week.
12
13
For the kids they will be, I don't know, educated during the two hours they used to spend in the
14
sheltered workshop and they will be given transition services, including job experiences in real
15
jobs that will prepare them for jobs in real jobs when they graduate, which I think is what we all
16
expect of our high school students and people with disabilities should expect no less.
17
18
All the questions that we have to deal with here, what's segregation? All these things started in
19
talking about fairly large segregated settings. But the ADA doesn't just say you can't put people
20
in fairly large institutional setting it says you have to put them in the most integrated setting
21
appropriate, this is where we're very conscious of trying to make sure there is a range of choices
22
available for everyone.
23
24
So people may be able to choose things along the spectrum of more segregated or more
25
integrated but they have to have those options.
26
27
And a recent District Court case gave us factors in deciding whether something was segregated
28
or not. Things like size, the percentage of people with disability who is were in the location, so
29
100% clearly more segregated. Inflexibility of your schedules, when you take your medication
30
or when you eat meals or what you eat for meals, inflexibility in choice of roommates, lack of
31
privacy or control over your personal space, access to visitors, ability to leave, choice of what
32
you are going to do during the day, availability of nearby integrated things and transportation
33
and even if the rules don't look very strict do people actually leave? That's where the key is
34
right. You don't have to look at well this rule makes people not leave, but people are not
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leaving, so there must be a problem.
2
3
Do people actually have visitors, do people actually have outside relationships, and some of the
4
things that we are looking at are for example conditions that people without disabilities would
5
not accept, like sub minimum wages, the rest of us wouldn't take that, that's an indication that
6
there are only people with disability there is and they are force to take it. Activities that adults
7
don't do, like colouring. And bad conditions, like healthcare conditions like the rest rooms didn't
8
work, that most people without disabilities would find unacceptable.
9
10
Size, what size is too big? This is again progressive realisation, you take states where they are, if
11
they only have available six bed group homes you say well now you need to build a cadre of four
12
bed group homes so people can have choices you need to build a cadre of two bed group home
13
so is people have choices.
14
15
What's a facility, so now we're starting to say we're going to build these integrated facilities, the
16
first option was we're going to build a campus, each one will be a four bed group home but they
17
will all be located on the same block, that's an institution. What about the floor of an otherwise
18
integrated building, sounds like segregation to me.
19
20
What are you looking at? You're looking at the state, we're looking statewide. Does this look
21
integrated? How much money is the state spending on institutions versus community based
22
services?
23
24
Do you look at the school district? Well the school district is all integrated except for this little
25
pocket over here, that little pocket over there is still segregation.
26
27
Some of the things I'm interested in are what if people with disabilities are over represented in
28
prison, or in homeless shelters or emergency rooms, that indicate that is your community based
29
services are not there. If people are going in for less conduct based but more appearance based
30
crimes, loitering, it starting to look like you're sending people to prison to get mental health
31
services, because you are not providing then in the community.
32
33
If people with disabilities are highly over represented in homeless shelters it's starting to indicate
34
that you are not providing community based housing and sending them to institutions to get
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housing, so we're starting to look at all of those things.
2
3
What's the percentage of people with disabilities that indicate segregation? Okay not everybody
4
in the building has a disability. 70%, is that integrated or segregated?
5
SPEAKER: Segregated.
6
MS HILL: 25%?
7
SPEAKER: Segregated.
8
MS HILL: We're looking at 20%, I know it's too high, but 20% is at least consistent with the
9
percentage of people with disabilities that we found through census is in the country. Now it
10
shouldn't be 20%, all people with mental illness, that's not representative of the representation of
11
people with mental illness in our country, so we're looking at all those things.
12
13
It's not just about people in institutions getting out, we now have case law that says you don't
14
have to go in, in order to have a right to get out. We deal with cases where people are put at risk
15
of institutionalisation, serious risk of institutionalisation, so it doesn't have to be you're at the
16
front door before you have a right not to go in, you have to be at serious risk of
17
institutionalisation and lots of people going in is an indicator of that, a direct pipeline, we found
18
a direct pipeline from the school based sheltered workshop to the adult based sheltered
19
workshop, they are doing the same job, subcontracting for each other and refer directly there
20
when they graduate.
21
22
Long waiting lists for community based services, especially in they are urgent waiting lists and
23
my blanket policies that prohibit certain services in the first case that dealt wet this, this was
24
refusal by a state to pay for adult diapers, a woman was going to have to go into a nursing home,
25
the state was going to pay 40,000 dollars a year instead of what, I don't know 400 dollars a year
26
by making this choice because they decided on that.
27
28
Also caps on the level of services, you can only get one visit to a psychiatrist per year under this
29
and therefore anything else you have to go to an institution. Any of those blanket kinds of
30
policies indicate that they are creating urgency in terms of risk of institutionalisation.
31
32
All right I'm done, questions, thank you very much I really appreciated your attention.
33
CHAIR: Thanks Eve for that fascinating presentation, we have had two fascinating wonderful
34
presentations from Camilla and Eve, I'm sure we have thousands of questions; I am going to be
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strict and keep to time, I am going to take a couple of questions and I'll take them from people
2
who perhaps haven't asked questions already or haven't had an opportunity to chat, so the first
3
question please.
4
SPEAKER: I feel my question is urgent I did want to get it in today. First MS hill thank you for
5
a very interesting and powerful presentation and thank you for all the work you have done on
6
getting people out of institutions I really appreciate your work.
7
8
That said, I'm going to ask perhaps a slightly aggressive question, I truly appreciate you taking
9
your time to address it. To be as quick as possible, in 2009 disability rights international
10
submitted an urgent appeal to the UN concerning the Judge Rosenberg Centre or JRC in
11
Massachusetts and it's an institution which uses powerful electrical skin shocks as a form of
12
behavioural modification for children with disabilities the UN special rapporteur in 2010
13
publicly agreed with our assertion that practices rose to the level of torture under international
14
law and in 2013 more than two years later and the US State Department and Justice Department
15
failed to address that issue, the new UN special rapporteur on torture sent a follow up letter to
16
the government asking why the torture continued to occur and both rapporteurs expressed
17
concern on US television.
18
19
Now I understand the US has taken steps since the release of our report and that there is an
20
ongoing investigation into JRC on ADA violations on discrimination, however this does side
21
step the issue of torture. I also understand that the FDA is trying to outlaw the strongest of the
22
shock devices but not all of them, also side stepping the issue of store tour and I also understand
23
that the justice department cannot speak on an ongoing investigation, namely the one into
24
discrimination on ADA violations.
25
26
However children with disabilities remain to be tortured in the US and protection from torture is
27
a non...
28
CHAIR: Sorry please get to the question.
29
SPEAKER: My question is simple with two UN special rapporteurs banging on the door of the
30
you have the S yelling torture and saying it clearly, what mechanism at the justice department is
31
available for the justice department to directly consider the issue of torture at JRC and what will
32
it take to get that ball rolling. Thank you.
33
CHAIR: One more question. Perhaps somebody who hasn't had an opportunity yet.
34
SPEAKER: I have a question for Ms Hill, I want to know if the FDA was concerned with, if
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they dealt with matters of segregation and disability in the military, like with soldier that is
2
develop mental illness and then medically retired or people who come back with disabilities and
3
they are forced to retire, I was just wanting to know if the DOJ had any thoughts on that?
4
MS HILL: So the JRC question. This is an issue of silos an we are trying to break down the
5
silos between agencies and their jurisdictions, so we are talking to the FDA, we are talking to the
6
Department of Health and human services which provide funding, we are talking to both the
7
states and we have talked with JRC itself.
8
9
10
Our lens is de-institutionalisation. So our lens is focused on states that send children to JRC as
opposed to having a hook around JRC itself, because for a variety of reasons.
11
12
FDA has jurisdiction over whether the device is medically appropriate and the health and human
13
services department has jurisdiction over whether funding can be provided to the states and that
14
funding then used to support children at JRC.
15
16
Our investigations are ongoing so I didn't really comment on how they are ongoing, on how they
17
are happening as you know.
18
19
Torture we would have to - usually what I would say is that the Civil Rights of Institutionalised
20
Persons Act would be a hook for that, except that JRC is a private entity and the CRIPA only
21
applies to public entities, so it would have to be state run and it is not. So there are a number of
22
jurisdictional issues there. We are, I can assure you, doing all that we can, through our
23
jurisdiction and nagging everyone else in the government to the extent that I'm not sure they are
24
returning my phone calls any more about how best to exercise their jurisdiction.
25
26
We agree it is urgent, we agree that something needs to be done and we are trying to bring all the
27
tools together that we can bring. But I would also point out that there is family, tremendous
28
family support for the JRC and the treatment that students get there.
29
30
So we are also trying to recognise, as we have been talking all morning, about allowing people to
31
make choices that we disagree. And so trying not to be disrespectful of the choices that parents
32
make for their children that we disagree with.
33
SPEAKER: A very specific question. Is there a US department that has jurisdiction over torture
34
in private facilities?
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MS HILL: Private facilities no there is no.
2
SPEAKER: That's fascinating, thank you.
3
MS HILL: Sorry the other question, the military. Again the jurisdictional question. The
4
military is a federal agency and has had limits built into its ADA requirements, it doesn't have
5
ADA requirements basically, so that's why we don't exercise jurisdiction over the military. I
6
know that the Department of Defence and departments of veterans affairs are working very hard
7
to try to improve their responses to military staff and returning veterans with disabilities,
8
particularly they are recognising the need to better address mental health conditions among
9
returning veterans and, but that is within their jurisdiction to do and I know that they are working
10
on that.
11
CHAIR: Just to say Europe, there is a European Court of Human Rights judgment that places a
12
positive obligation on the State even if somebody is detained in a private facility to ensure there
13
isn't a violation of the right under Article 3 of the European convention of human rights and
14
Storck versus Germany sets it down clearly so if the JRC was in Europe the State would be
15
under a positive obligation to ensure they weren't be violated. Anybody have a question for
16
Camilla and then we'll break for tea and coffee.
17
SPEAKER: Yes Camilla, simply a simple clarity, in your presentation you stated that
18
institutionalisation is not mentioned in Article 19 but I was wondering when you look at Article
19
19 A the last piece of the paragraph which says and are not obliged to live in a particular living
20
arrangement could that be the catch phrase for de-institutionalisation.
21
SPEAKER: Thank you the question is also to Camilla, I just want to make sure that I understand
22
the anti-discrimination part of Article 19 correctly, let's say for example that, because Article 19
23
is not directly on housing, but obviously it does relate quite closely, let's say there is a housing
24
policy that indirectly discriminates against people with disabilities in whatever way, let's say for
25
example that you can't sign or own a house if you have a psychosocial disability, that is indirect
26
discrimination, may be direct but in any case -- there would be an immediate obligation on the
27
State to reform that policy, irrespective of whatever the progressive obligations might be in
28
terms of rest of Article 19 I want to make sure I have it right.
29
MS PARKER: Okay I'll go through the first one first, maybe go to Gerard for the second.
30
31
Yes what I was saying was that there is nothing in Article 19 that says States must go down the
32
transition from institution to community based services, it doesn't have that there. But if you
33
look at Article 19 and the point that you have highlighted is one, but there is also the fact that it's
34
not to ensure people are not isolated or segregated is another. Eve gave a fulsome list of the
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sorts of things that add up to being an institution, and if you look at Article 19 it's clearly saying
2
those aren't acceptable.
3
4
So although it's not, as I said in the same way as Article 12 doesn't say you can't have
5
guardianship, if you look at what Article 19 is saying you need, institutions do not fall into that
6
picture at all that's the point I'm making. So the point, the phrase you have identified is one, but
7
there are many phrases within Article 19 that I think clearly show that institutions have no place
8
under the Convention on the Rights of Persons with Disabilities.
9
10
In relation to the discrimination point, I think yes, that would be an example where you would be
11
looking at Article 19 but also again remembering we're looking at the Convention in the full
12
context of the Convention, so you'll be looking at Article 5, looking at non-discrimination as
13
another theme that goes right the way through the convention, so you'd look at those issues and
14
say is there discrimination and then make your arguments as to why that particular policy would
15
not be acceptable, so I think this is an area that would really merit some detailed consideration,
16
so sufficient' got progressive realisation, but you've got this clarity that discrimination is not
17
acceptable.
18
19
So then I think you will then be starting to look at policies about where people are placed and
20
saying are those policies in themselves, are they discriminatory and if they are, I think that
21
would be another angle to start to negotiate with, a discussion with the government. But I'd want
22
to pull in, as I was saying earlier, all the working together, wanting to pull in experts and
23
discrimination. So I'd talk to Gerard and others I'm sure.
24
25
But thank you very much for raising that, that's a really important point and another area that
26
core really be justified with having a lot of discussions around that, I don't know Gerard do you
27
want to add anything to that?
28
DR QUINN: Right now I lack legal capacity so I don't think I can respond rationally. I did want
29
to put a question to eve if we have five seconds?
30
31
I think that both presentations are fascinating, because it shows the kind of overlap between the
32
trajectory of international law and centre of gravity of US law is fascinating, but I've heard
33
scepticism in European circles about trying to replicate the Olmstead decision in Europe,
34
scepticism I don't share by the way, one of the reasons was that there was some wiggle room
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created in the judgment, well if there is counter veiling necessities that the State has to fund
2
that's a factor that has to be borne, but I say so what, that's progressive achievement we can
3
manage that. The other ground of scepticism is the language of the decision, I can't recall it
4
exactly was that inappropriate or undue institutionalisation is a form of discrimination, flip it
5
over it implies the opposite, which is in some instances there may be due or appropriate
6
institutionalisation, I am wondering have any states tried to drive a coach and four through that
7
apparent exception and tried to argue notwithstanding all the things we are talking about, for
8
example some people with high dependency needs, institutionalisation is not only the best way
9
to go, but the most appropriate way to go?
10
MS HILL: I do want to clarify one thing on torture, torture can be addressed as criminal
11
violation, it's a little, there is an FDA approval of the divisions, that's usually done at local level,
12
there can be federal criminal investigations as well, could be developed as a hate crime, I'm
13
thinking out of the box here. But that has a level of intent issue here. So those are -- there are
14
things that could address torture, they are just not as close a fit.
15
SPEAKER: As not a lawyer can you clarify who would start that process.
16
MS HILL: At the state level the state police would start it and at the federal level a US attorney
17
or a criminal division at the justice department.
18
19
Okay yes we do recognise, again I refer back to Rosemary's progressive realisation, which I'm
20
going to use the heck out of! We do start where states are, so if we don't have the resources and
21
you have to recognise that running two systems fully at one time as you move people in and out
22
is difficult, so it's a more gradual process of moving people out and shifting the funding and
23
initial influx of funding to support both, but I do believe that that's not, that can be overcome,
24
particularly over time.
25
26
The law of the Olmstead case says unnecessary institutionalisation and we as a culture so far are
27
not at the point where we would say that no institutional services are unnecessary, so somewhere
28
between -- this is a joke -- somewhere between two people should be in an institution and the
29
hundreds of thousands that are now in institutions, right, and I lean towards the two and others
30
lean towards the much greater. But even within our disability community there is division, and
31
within the parent community there is division about the ability to choose a more institutional
32
setting. So we want people to have that choice.
33
34
And I have actually met people who went to college and participated actively in their day-to-day
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lives and went to live at a nursing home at night, and that was their choice and it worked for
2
them. So I don't have to agree with their choice but they knew what they were doing and they
3
knew what the options were and that was the choice they wanted.
4
5
So we're trying to recognise choice, we're trying to recognise where we are in our understanding
6
of disability and the choices that people might make at this point, but it's a tipping point issue, so
7
as with disability rights law in general the more people with disabilities out in the world the
8
more without disabilities and with disabilities recognise the capacity and expectations that they
9
can have and the things they can do, we can do, the more we start to move towards the only two
10
people should be in institutions or only no people. So again it's a progressive realisation
11
approach to things.
12
CHAIR: Great I'm going to call things to a close for this part of the afternoon, I'll invite to you
13
take some tea and coffee in the lobby and I'd like to thank both of our speakers for a very
14
fascinating presentation.
15
16
We'll continue in 15 minutes thank you.
17
18
Coffee break
19
20
CHAIR: Welcome back to the final leg of today and the final number of presentations an
21
contributions on the theme of choice. And what, no better way to do with our first speaker who
22
is coming from the European network of independent living, Ines Bulic has 8 years experience
23
working with ENIL and she'll talk about the challenges and obstacles in Europe to realising
24
de-institutionalisation and she has a number of different roles and job titles in ENIL and allow
25
her introduce herself fully better than I can I don't have a Bio on her, to talk through some of
26
those challenges, thank you.
27
MS BULIC: Thank you. I know it's the end of the day so I'll try to make it a bit more
28
interesting, exciting! So as you've heard I come from the European Network on Independent
29
Living, but I do have a number of titles, among others I coordinate the European coalition for
30
community living, which is an initiative focusing on de-institutionalisation. I am also doing
31
some work for the European Expert Group on de-institutionalisation among others, so that's me.
32
33
I am actually from Croatia but based in London. So I was asked today to talk about the
34
challenges of de-institutionalisation in Europe.
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2
I will tell you just a couple of words about ENIL to start with, shorten it for European Network
3
on Independent Living and then I will start with where we are in Europe today, some of the
4
things that have been said by Camilla Parker already, why are people in institutions? What do
5
we mean by de-institutionalisation? And why are we moving so slowly towards community
6
living in many parts of Europe? And I will suggest some of the things that we could do as
7
disability activists and our allies to make this transition towards community living a bit faster.
8
9
So for starters about ENIL, we are an organisation of disabled people, I'm not the most
10
representative person because most of my colleagues are disabled people themselves, but I am
11
the one focusing on de-institutionalisation so they were quite happy that I come speak to you,
12
and you will meet our co-Executive Director, Martin Naughton the last day, or on Thursday, he
13
is going to be the judge in your moot court exercise.
14
15
We like to say that we are the independent living part of the independent living movement in
16
Europe. Some of the principles that our work is based on, is peer support, which we've heard
17
mention today, of course de-institutionalisation, self representation, self determination and we
18
are also a cross disability organisation.
19
20
We have quite a loose way of working, we've Secretariat in Dublin, but we are based throughout
21
Europe and we have regional teams in four countries, regional coordinators, we are not so big
22
actually. So we like to think we have quite a good link to the grass-roots level and to the people
23
who actually live with disability in different countries and who work with disabled people in
24
different countries.
25
26
Somebody said today they don't like to use the word independent living because it's interpreted
27
as self sufficient, but this is certainly not what we mean by independent living. It's very much
28
about having control over one's own life and lifestyle and the choices of how one wants to live
29
their life.
30
31
So this is what we mean by independent living and we, as ENIL, believe this can be achieved
32
through services such as personal Assistants, barrier -- through a barrier free environment,
33
housing options which allow for independent living of disabled people, technical aids, etcetera.
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Finally ENIL runs the initiative of the European coalition for community living which has been
2
focusing on both de-institutionalisation in general and also in particular on the use of European
3
Union funding in this area for a number of years, and we are one of the members of the
4
European Expert Group on the transition from institutional to community based care.
5
6
The group has produced the common European guidelines which Camilla Parker, on
7
de-institutionalisation, which Camilla mentioned in her presentation.
8
9
In terms of where we are, again not to repeat things that Camilla has said, but just one note of
10
introduction, I will been asked to talk about Europe, but my focus has been mainly on the
11
countries of central and eastern Europe, so the countries which has joined the EU last, the group
12
of countries and also the countries of the former Soviet Union. That's my focus, having said
13
that, the number of 1.2 million people of institutional care that Camilla mentioned covers not just
14
Central and Eastern Europe but the whole of Europe. So even countries which are such as
15
France, the Netherlands, Belgium, still heavily relying on institutional care for disabled people,
16
even though the problem of institutions is sometimes perceived as being a problem only of the so
17
called less developed countries in Europe, which is not the case.
18
19
We know from the report that Camilla mentioned the DECLOC report which is by the way the
20
only comparative report or one of the two comparative reports produced in the last five to ten
21
years on the situation in Europe in terms of people in institutional care, we know that over the a
22
quarter of places in institutional care are filled with people with intellectual disabilities and the
23
next most represented group of people in institutions are people with mental health problems.
24
25
We know that even though there has been a lot of talk about the damage and effect of
26
institutionalisation on children, especially on children between the age of 0 to 3, the number of
27
children in institutional care in Central and Eastern Europe and former Soviet Union is actually
28
increasing as we speak, so despite all the attention we are not, countries are not managing to
29
reduce the number of children in institutions.
30
31
We know that the most common reason for leaving institutions is death. So most people who
32
enter institutional care stay in institutional care for the rest of their lives. And we have -- we
33
know in terms of the funding that, talking about EU Member States, that in 16 out of the 25 EU
34
Member States, so more than half of EU Member States, State funds are used to fund institutions
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with more than 100 people, so quite large settings.
2
3
We also know that for sure in 7 EU countries, these are countries of central and eastern Europe,
4
the EU funds as well as World Bank funding and other funding, Council of Europe funding, US
5
development agency funding, has been used also to fund either renovation of institutions or
6
building new institutions in the last five years.
7
8
As you can see the situation is not very positive. Why do people end up in institutions, again
9
Camilla has mentioned the main reason is the lack or absence of support services in the
10
community, aggravating factors can be belonging to certain ethnic group, we know in some
11
countries there is an over representation of Roma children in institutional care, and poverty is
12
also an aggravating factor.
13
14
Linked to that and part of that is the lack of family support services which is why some families
15
are forced to, many families are forced to place their disabled children in institutional care, either
16
from birth or from very early age. The professional attitudes certainly contribute to
17
institutionalisation, doctors advise parents to place their child in an institution, psychiatrists think
18
that mental healthcare cannot be provided outside institutional setting, social workers which we
19
heard from the example in Serbia also play a role, judges as well. So a whole set of
20
professionals who do feel that people are better catered for and cared for in institutional care.
21
22
Stigma is a big factor with families being ashamed of having a child with a disability and hiding
23
them in institutions etcetera. Guardianship laws in many countries, which was the topic of this
24
morning is a big contributing factor to institutionalisation and there are other barriers to social
25
inclusion, including inaccessible environment and inadequate, and mainstream services not being
26
accessible and available to disabled people which are a big factor.
27
28
Here I would like to just mention education, a lot of children are institutionalised because they
29
can not access mainstream education, they go to special schools which in fact are institutions
30
because they live there and at the same time get some sort of education.
31
32
So these are some of the reasons, and it's not an exhaustive list, but some of the many reasons
33
why people end up in institutions.
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Again what do we mean now by de-institutionalisation? It's been said today but to emphasise
2
again, we are in the talking about just the closure of buildings and moving people somewhere,
3
we are talking about developing high quality services, person centred services in the community,
4
talking about preventing institutionalisation in the first place, using funding much better, we are
5
talking about closing institutions, so not taking some people out and leaving institutions running
6
in the same time as developing community based services. You're talking about placing a
7
moratorium so deciding not to build any new institutions, and we are, de-institutionalisation is
8
not just about developing some specialised services for disabled people, but mainly about
9
making mainstream services accessible to disabled people, such as health, transport, education,
10
employment and I think this was clear from the US experience, that's what they are trying to do
11
as well.
12
13
I won't go into why people need to live in the community, Camilla has already gone over that,
14
but just to mention one thing which is not on my list, there is so much good practice in how
15
people can be supported in the community including from some European countries,
16
Scandinavian country, US, Canada, Australia, others, we really don't -- there is so much
17
evidence as to why living in the community is so much better for people themselves and the
18
society as such, that it's sometimes difficult to -- you wonder why it is so hard to convince
19
governments and whoever that living in the community is better for everyone when they can see
20
that it works very well, very close by, and especially with the technology and documentaries and
21
whatever we have, being able to go on study visits, etcetera. So it's really a wonder.
22
23
The time goes by quickly! So the question why isn’t more happening in Europe on this, in this
24
field? Again some of the things, when you're speaking to the -- I spent a lot of time speaking to
25
people working in the European Commission and the governments as well, service providers and
26
you will hear all sorts of reasons why people should live in institutions and you hear things like
27
oh but okay some people can live in the community but not the people who require the 24 hour
28
support, people will be abused if you move them to the community, they will be isolated, as if
29
they are not isolated and abused in institutions.
30
31
De-institutionalisation is only for rich countries, we can't afford it -- you can talk about Sweden
32
all you want, but it doesn't work for us. The society is not ready; the society is not ready for
33
anything! People don't want to leave the institution, we asked them, the parent don't want the
34
children it leave. All sorts of reasons. And if we close the institution what will happen these
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people? So all these things which I think show mainly the lack of vision, how people with
2
complex needs, even all sorts of support needs can live in the community. It shows a lack of
3
political will of course which is one of the main problems, people who are hidden away in
4
institutions of course will not complain that much, nor will their parent who have long ago lost
5
contact with them, normal communities which don't know these people exist because they are
6
hidden away, and there is of course various interests, local authorities, trade unions, service
7
providers, parent, professionals, local communities, people have jobs or making money some
8
way etcetera, etcetera, so everybody's interest comes above the people who live in these places.
9
10
I will close with this. Some of the key challenges, I have one more slide, just to summarise, first
11
of all the countries are still over investing in institutional care, they are making buildings,
12
existing buildings better, which make it is more difficult to close them down after heavy
13
investment.
14
15
They are maintaining parallel services, they are leaving people with complex needs in
16
institutions and developing some sort of services in the community and by keeping the two
17
systems in parallel are making the whole thing very expensive and also attracting, by keeping
18
them open they are attracting new people who are still not accessing services in the community,
19
into the institution. They are developing alternatives which are still institutional in character,
20
some government gets the idea that group homes for 12 people gets great, so they develop
21
hundreds of them for everyone and they just move the same staff who used to work in the
22
institution and they think because these are located elsewhere and they cater for a smaller group
23
of people that's living in the community.
24
25
And sometimes they just re name the institution the centre for independent living, so all these
26
things are happening.
27
28
And this will be my last slide about what we can do, I think first of all we need to keep the issue
29
high on the political agenda, both at the national but also the European level, because it is just a
30
matter of human rights, I think that's the most important thing.
31
32
We have to provide models of good practice and there are lots of models of good practice. We
33
as ENIL think providing peer support for people both in institutions and people about to leave
34
institutional care is really important and we have a lot of people who have lived in institutions
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themselves and who are able then to talk to people who are in similar positions.
2
3
We need to monitor the situation, both in institutions until they close down, because there was
4
just a case two weeks ago in Romania where young disabled people are practically dying on a
5
daily basis in an institution, so before they are closed there is lots of horrible things still
6
happening in them.
7
8
We need to monitor the situation in the community, the people who have been moved out, where
9
did they go, what supports are they getting, are they getting any support, have they moved to
10
smaller institutions, we need to see where the funding is going, both European and State.
11
12
I would agree we need to use strategic litigation more to change law and policy. We need to
13
raise awareness in the communities then selves, these people have never seen disabled people
14
before, so they can be scared, they are scared sometimes. Then we need to work in partnership,
15
people who work with children, with adults, etcetera, with the elderly, to really be stronger.
16
17
Finally I would like to invite you to join us at the freedom drive in September, this is ENIL's
18
event which we have every two years where de-institutionalisation is one of the main issues, we
19
are going to the European Parliament in Strasbourg and it's taking place on 9 to 12th September
20
and it's a great event.
21
22
So I will close here thank you very much for your attention.
23
CHAIR: Thank you very much Ines for that really interesting presentation on the barriers facing
24
use here in Europe in terms of de-institutionalisation movement.
25
26
I'll now introduce you to a woman who needs no introduction Prof Rannveig Traustadottir who
27
will give a presentation in relation to the challenges to independent living in the Nordic
28
countries, even though we had her keynote on Monday, she doesn't need a further introduction,
29
thank you.
30
PROF TRAUSTADOTTIR: Thank you Charles. So it's very late in the day so what we are
31
going to do here is we are going to try to stick to the time and I am going to give you a broad
32
overview of the Nordic countries, what can be called a bird's-eye view.
33
34
We have five countries which we call the Nordic countries, Sweden, Denmark, Norway, Finland
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and Iceland, we see ourselves as a family of nations and we have a lot of formalised and
2
informal collaboration around all kinds of issues.
100
3
4
So I'm going to talk about these, really broad strokes about these five countries and for half of
5
the time and then for the rest of the time two young women from the Icelandic independent
6
living cooperative, they are going to talk about their struggle to start independent living
7
cooperative in Iceland. So first like this really big picture then we get a close look at one of the
8
things that's going on.
9
10
So quickly all of the Nordic countries signed the CRPD when it opened for signature. But only
11
three of them have already ratified and Norway ratified the 3rd June, two weeks ago which
12
reflects a different view.
13
14
In terms of de-institutionalisation and community living the Nordic countries had a golden
15
history before the year 2,000 I think we are still leading, but there is a much, a missed picture
16
which I will explain. The principle of normalisation which was the leading principle in
17
disability services for a long time originated in the Nordic countries in the 60s and 70s and while
18
it was mostly focused on people with intellectual disabilities it had a much wider impact.
19
20
So you can say that there was two phases or two chapters of normalisation in the Nordic
21
countries, the first is the initial phase 1 starting in the 60s, it was a change of policy and practice,
22
and there were two major approaches, one was attempting to normalise institutions, we thought
23
in the beginning that institutions could be normalised and made good. And there was also an
24
approach for de-institutionalisation, closing down institutions and creating smaller living units in
25
the community mostly group homes. Group homes were the answer to institutions in the
26
beginning, in the Nordic counties as has been the case in most countries.
27
28
In the Nordic countries however there were mixed size institutions one of the problem was that
29
we had good looking institutions, we never had horrible big terrible warehouses, we had bad
30
institutions but they looked good, Scandinavian design, you know, they looked good. So it was
31
really hard to convince authorities that these were terribly bad places, even if people didn't have
32
-- couldn't decide on their every day lives and stuff like that.
33
34
So we even had small institutions down to about ten people, they were institutions in most other
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places they would have been called something else, not institutions.
2
3
So during this first phase on normalisation we had much more active care focused on people's
4
development, it was very psychological, educational approach, it was the same trend in all the
5
Nordic countries but Sweden and Norway have always been the leading countries with most
6
innovative practices during all of these times I'm talking about.
7
8
So phase 2 of normalisation started in 1990s it was very intensified ideological debates about
9
what to do with disability services. There was a renewed commitment to de-institutionalisation
10
not least in Sweden and particularly, especially Norway, which closed all their institutions in a
11
great reform starting in ‘92 I think, early 90s.
12
13
So it was very much a top down approach in Sweden and Norway. So there was development of
14
small facilities and apartments with much larger private space than the first generation of group
15
homes, it was like a home and you have your own room and that was your private space, but
16
after the 1990s it was a development of small apartments where each person had their own
17
apartment, they could be clusters but there was much more private space.
18
19
And there was a strong tendency to de-institutionalisation of all services but especially for
20
people with intellectual disabilities and at the same time there was a move towards generic
21
services so disabled people should use the same services as other citizens.
22
23
So this was the 1990s. So if we turn closer to the current trend after 2000 then in the beginning
24
there was an ear marking of services, ear marking of funding from state to the municipalities
25
saying this is the money can get for disability services because at the same time there was a
26
decentralisation of services from state to municipalities and after 2000 this was cancelled and
27
what had been in the beginning quite heavy regulation of what was going on in the services, the
28
regulation was also cancelled.
29
30
So there was a great optimism that the local authorities, the municipalities would provide better
31
services than the state and that there would be a variation of services, closer to the people and
32
stuff, there were arguments that most of us have heard.
33
34
So there was a great optimism about decentralisation, but it didn't quite work out that way. What
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has happened in Nordic countries is that services have become more exposed; there is a general
2
trends, problems and priorities of local public administration, including potential budget
3
shortfalls and cuts, especially not least now when many countries are facing economic problems.
4
5
At the same time when the services were decentralised there was a great increase in demand for
6
services, so much more people were being served than while the State was in charge of the
7
services, which meant increasing costs for the municipalities.
8
9
So we could say that after 2000 we have seen a bit of a backlash unfortunately and I think this is
10
a really important lesson for us all, that if we achieve something there is a struggle to keep in that
11
place, because there are very strong forces that want to segregate and congregate disabled people
12
away from the mainstream.
13
14
So residences that were, for example in Norway and Sweden, 3 or 4 people living in a space in
15
the 90s, this is actually numbers from a Norwegian study, a leading scholar on disability studies,
16
so in 94 there were 3 to 4 people living in one place and now in 2010 there were from 7 and up
17
to 25 people or more in 2010. So there is a clear sign of going backwards to more larger groups.
18
19
So this second generation of group homes, they have grown larger and we are seeing now a third
20
generation of group homes, where we see mixed groups in small community institutions and by
21
mixed groups I mean people with diverse impairments and even older people and disabled
22
people living in the same congregated settings, which can be a cluster of apartments, but this is
23
much more institutionalised, but this is being developed under the rubric of community care.
24
25
So we see de-institutionalisation but also the emergence of community institutions and Finland is
26
a case in point here. They still have a number of institutions, they have a plan to close down the
27
institutions, but they have entered the EU and it opens up that there can be a bit on the services
28
in Finland, it can be the municipalities or the municipalities can ask whoever to provide
29
community services and now large institutions -- international care companies are bidding to do
30
services for disabled people in Finland at a good price which is seductive for municipalities who
31
don't have much money. So we are seeing community institutions coming back. So I say to
32
countries be aware of trying to keep the progress you made.
33
34
So the current trends, it's not all bad news, there are also some good news, but there is a bit of a
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mixed message so local authority, we always knew and expected that it would be local variation
2
should be depending on its place, different places should have different kinds of services, but we
3
never expected that it would be such unequal quality of services, there is a lot of inequality of
4
services in different places.
5
6
The marketisation and public management reforms, this competitive tendering of services which
7
I mentioned about Finland, it makes Finland look somewhat more like the UK than the other
8
Nordic countries, with a lot of private companies.
9
10
Professionals, which in the era of normalisation were kind of watchdogs, but they are not as
11
strong advocates for community services as they used to be. Politicians have lost a lot of their
12
interest, also now we are dealing with local politicians and local disability groups are weaker
13
than the national big disability groups so there is less of an influence on the politicians, but
14
politicians can make a lot of difference, so it's important to get them on board.
15
16
So the yardstick for comparison has very much come to be not like it used to be let's do the best
17
we can, let's find whose doing the best and do that too, now it's like why is this municipality
18
doing so much better than we do in testimonies of cost, so what can we learn from them to drive
19
down the cost, so that's become the yardstick.
20
21
The good news is that there is more emphasis on what is being offered as consumer rights and
22
citizen rights of people, empowerment and rights with the CRPD. There has been a positive
23
development of personal assistance and independent living options, but the user or stakeholder
24
participation in influencing what's going on has become in some ways in individual has grown
25
stronger, but in terms of the bigger system I think that the disability organisations are having less
26
of an impact than they did earlier, at least in some areas, so I'm hoping that the CRPD and the
27
emphasis on involving disabled people at all levels will make a difference, but that remains to be
28
seen.
29
30
So what I think one of the most worrying things is the belief that the marketisation of services
31
will drive down the costs, there is no research to support that. No research to support that. Also
32
it's less costly to provide services in bigger institutions, there is no research that supports that
33
either. So this is really on some sort of belief, not evidence or research or data.
34
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So this is my last slide, I really thought about why are there so many, there isn't much attention
2
to the CRPD in the Nordic countries, so I've come up with a few suggestions why that is the
3
case. I think that first and the biggest problem is arrogance. We're doing it all, we're doing so
4
well, we are the best, we are the leaders, we don't need to pay attention to the CRPD, it's for the
5
other countries that are awful. So this is terrible arrogance and we'll never improve unless we
6
stop being so arrogant.
7
8
There is also a great lack of knowledge and understanding of what the CRPD is all about. So I'm
9
very happy to see many Norwegian colleagues here, we need to come together and get the
10
message out.
11
12
There is also a lack of political interest. There is a lack of resources also; the municipalities are
13
very stretched, like Iceland had this collapse, so there is a lack of resources. And there is also
14
deceptions, like you know what Denmark did, they don't have any institutions do you know why,
15
because they don't call them institutions they just changed the name of the facilities, they are
16
called community residences, so there are no institutions in Denmark, it's such a big deception.
17
Also authorities say they are doing things they are not doing, so there is a lot of deceit, making
18
things look better, sound better, it's the same old shit, sorry!
19
20
So I think we really need to use the CRPD to make the change. So over to my colleagues from
21
Iceland, Freyja and Embla.
22
23
I can introduce them, closer to me is Embla Augustdottir a student at the university of Iceland,
24
she is the chair woman of the independent living coalition and further away is Freyja
25
Haroldsdottir director of the independent living cooperative, I must say I am a great admirer of
26
these young women and they have made such a difference in Iceland with their work. So young,
27
so impressive, so the floor is yours girls.
28
MS HAROLDSDOTTIR: Thank you we obviously don't have to introduce ourselves now, I'm
29
Freyja. In the beginning I want to tell you that nine years ago, when I was 18 years old I went to
30
a conference in the US where I was for the first time met people who had the same impairment
31
that I did, maybe it doesn't sound very interesting, but what happened there was it totally
32
changed the way I saw my future.
33
34
Before I went to this conference I had spent my teenage years really afraid, afraid of what would
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become of me and where I would end. I was afraid that I would not be able to move away from
2
my parents, I was afraid that I wouldn't be able to go to university, I was afraid I wouldn't be
3
able to go out to work on the open labour market, I was afraid I wouldn't be able to start a
4
family, I was afraid that I wouldn't be able to travel and so on. I was really afraid and I was too
5
afraid to ask if I was right. Because I had decided that people would say yes Freyja, it's true,
6
there will never come anything out of you and you will probably end up in an institution or with
7
your parents for your whole life.
8
9
But at this conference I met many people who were in similar situations and they were living
10
ordinary living. They were working in various jobs, they had finished some kind of education,
11
whether it was university or something else, many of them had children and families, had moved
12
away from home and travelled all over the world and just done the things that I was afraid that I
13
couldn't. And just to see that really helped me understand that if they could, so could I.
14
15
But what they all have in common was, or most of them at least, was that they had personal
16
assistance and at that time I had never heard of it. From that moment on, I'm making the story
17
very short obviously, but at that time -- from that time I started to fight to get direct payments
18
and it took me a whole 7 years to get a full contract of assistance, 24/7.
19
20
So two years ago I got assistance for 24/7 but three years before that I got a contract where I'd
21
assistance in my waking hours. So in this period of time from when I went to the conference I
22
obviously had first realised how important it is for disabled people themselves to fight for their
23
rights and their independence and freedom, but also how life can change when you change your
24
surroundings and offer assistance that makes things possible that seem not to be possible in the
25
beginning.
26
27
It was since I have gotten assistance I have graduated from university, I am working in the open
28
labour market, I have moved away from my parent and I am always travelling, so obviously all
29
the things I thought were going to be, it didn't turn out as bad.
30
31
So when I experienced this I felt a great need for others to experience it too. So that's really why
32
I am now the director of the independent living cooperative in Iceland. I felt it was important for
33
you to know why we're here today and why we are doing what we're doing. That's all.
34
MS AUGUSTDOTTIR: I got to know about independent living and about personal assistance
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when I was 19. Before that I didn't know anything about it and I didn't research any assistance
2
or nothing, didn't get from my municipality because everything that they had to offer didn't suit
3
me and my family. So I just had assistance from my family and friend to help me all the time.
4
5
I didn't really think about it because I just thought that was the way it should be. So when I got
6
to know about personal assistance I got really shocked at first, because it was the first time that I
7
heard that people had expectations like I had for the future, so I got really shocked, then I got
8
really glad because I knew right away this was the only way for me to have the future I wanted
9
to have and experiences, have a job and go to university and stuff like that.
10
11
So I got really happy, it was strange, I was 19 when I got to hear about this. And that was just
12
because I accidentally met Freyja, that's the reason why I knew about it, it's a small country and
13
things happen like that in Iceland!
14
15
So I got really -- by the way I got really interested in all these things concerning personal
16
assistance and the philosophy, so I got really active in the independent living movement in
17
Iceland right away. And in 2010 the independent living cooperative in Iceland was founded, it
18
was just three years ago.
19
20
We work for people at the table, we were people at the table that founded the cooperative, we
21
had all kind of different impairment, we also had parents of disabled children and what we all
22
had in common was that we were really unhappy about the services that we could get from our
23
system in Iceland and we decided to form the cooperative to do something new and to try for
24
getting personal assistance. So that's why we started the cooperative in the beginning.
25
26
The cooperative is a member of ENIL and it is -- it offers direct payments for personal assistance
27
and it also offers peer support and now because we are getting personal assistance we are really
28
active in political activism and in the rights.
29
30
We are a non-profit organisation and we look a lot to similar cooperatives in the Nordic
31
countries. We are really a few people, there are not many people who have personal assistance
32
or who want to have personal assistance, it's a really small group of people, but it's going to get
33
bigger and bigger, but slowly. So that's the situation of the cooperative today. Thank you.
34
MS HAROLDSDOTTIR: I think we went through the history of how things have developed but
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1
there has been a trial project on direct payment on personal assistance since 2011 and it came
2
into the law, the Disability Act when the services were transferred from the State to
3
municipalities and it's a trial project that was supposed to be from 2011 to 2014 and then it's
4
supposed to be legalised into law. We hope that this is what will happen but we're not sure yet.
5
6
It's been quite an interesting process I have to say, and the structure, there is a committee that the
7
Ministry of welfare is responsible for who -- this committee is supposed to make, like the
8
guidelines for the trial project, and also they have made this handbook for the municipalities of
9
how they are supposed to do this, like guidelines there are, they are supposed to be like an
10
extension, but then again they are not and we don't understand why.
11
12
So the municipalities have to take a look but we're still trying to understand why they exist and
13
what's the point of them but at least they are supposed to guide the municipalities in this process
14
of starting personal assistance.
15
16
In the cooperative we have had quite a lot of difficulty being a part of this process and
17
participating in decision-making. We had to fight quite hard to be invited to the table on this
18
committee. The committee has three persons from the municipalities, two persons from the
19
Ministry and a staff member of the committee from president Ministry and then they have two
20
members from representative disability organisations. But in the end we also got to be on the
21
committee but we are not allowed to vote, so we can stay there and we can make
22
recommendations and we can listen but we can not in the end have a say if there is voting.
23
24
I think what I would feel are the biggest challenges for the cooperative are both the participation
25
of disabled people in decision-making, in policy making and in the structure for example of this
26
trial project. We have to work really hard so people listen, and what has really been the most
27
successful co-operation was a few parliamentarians from three political parties.
28
29
So through them we have gotten our views across and they have worked quite closely with us
30
trying to use our experience and knowledge to build up this trial project.
31
32
Often we feel nothing should be about us without us, but somehow we feel everything
33
sometimes is about us without us. So that's been quite difficult and it's been difficult because the
34
decision has often threatened the rights of disabled people, for example in the trial project there
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1
was great emphasis on excluding people with intellectual impairments or disabilities from the
2
trial project, and it took a lot of effort and time both from disability organisations and also the
3
independent living sector, we were working to get it through, but this trial project should be for
4
all disabled people, regardless of age or impairment, and also there were a lot of things that were
5
very important that we were very afraid of from time to time that wouldn't be a part of the trial
6
project. So it was really dominated by the Ministry and by the local authorities.
7
8
What we also found quite challenging is the lack of legal support for disabled people. A lot of
9
people come to us, fighting for personal assistance for a very long time. Some of them have
10
some contract but it's not as much service as they need and some have nothing. Many people
11
living in institutions but others also live with their families and need to use their support, maybe
12
24/7 and they are getting no assistance at all. Of course this is a violation of their rights, but
13
Iceland has not are the ratified the Convention, the Disability Act is more about the municipality
14
than the rights of the people and it's not from the point of view of human rights so -- so it's quite
15
difficult to make a case when there is a violation of people's rights.
16
17
Also it's problematic that it's very expensive to get legal advice, to get a lawyer to help you. The
18
only people who are allowed to get sponsored or legal aid from the State are people with very,
19
very low income, so it's only people who are really, really poor you could say that will get this
20
legal aid, but people who get some income cannot afford to get a lawyer they are in a problem.
21
And it is really difficult and really serious because most of the cases we have been working on
22
need lawyers. We need the knowledge and we need the experience from people working in the
23
field of law to be able to succeed in this matter. So we worry about this a lot.
24
25
We have cases that we have succeeded in and people that have got contracts are usually people
26
who have had lawyers and that has been possible both because of our support from disability
27
organisations and also support from the lawyers office, they have decided to give some of their
28
work so we are able to do this. So that's been important, but it's so difficult. I think Embla do
29
you want to take over?
30
MS AUGUSTDOTTIR: Iceland obviously is that way, but for a long time in Iceland we have
31
been passive and just accept things that we got, just like I did when I was young, I just live with
32
my family, I didn't argue and I wasn't angry, I just did it because I thought it was normal. But
33
now I think for the first time in a long time we have, for example the people that are acting in the
34
cooperative, we have people who are not going to accept how the facilities are any more and
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people are starting to realise that they have to do something, they have toe stand up and say
2
something otherwise it won't change. So we are seeing that slowly more people are coming,
3
there are more people willing to get loud and say something about the services that we are
4
getting now. That is something new in Iceland, definitely in this area.
5
6
It is really hard, it's really slow and it's really hard to stay focused. The UN Convention and the
7
philosophy are really important guidelines for us and our political activism. For the last three
8
years they have been really difficult in Iceland and what has kept us going and what has been
9
reminding us that we can do it is when we look to other countries, the other Nordic countries and
10
other corporations and elsewhere, we look at ENIL and cooperatives and disability movement in
11
UK and in America and when we do that we get the strength and we are strong enough to do it,
12
to keep ongoing and I think we are realising that finally we are able to look to the other countries
13
and say if they can do it we can do it as well, because we feel like we are like 20 years later in so
14
many, especially concerning independent living in Iceland. So we look to other countries who
15
can lead the way for us.
16
17
So yes, I think the most important thing right now is that people are getting angry in Iceland
18
that's what we want. That's all we want to say to you thank you.
19
CHAIR: Thank you very much to Rannveig, Freyja and Embla for the presentations, it's very
20
late in the evening it's a long day, we probably even have a longer evening planned but before
21
you enjoy that, I will take a couple of questions, particularly if anybody has a last question, that
22
hasn't been before asked a question we'll be amenable to facilitate you, hands up, any questions
23
at all? People just want to head off into the night; surely there is one question. Okay we'll wrap
24
it up there okay. Thank you very much for attending the third day of the summer school and we
25
look forward to seeing you bright eyed and bushy tailed in the morning, before I let you go my
26
colleague Elaine will say a few words to you.
27
MS KEANE: Hi everyone just a few announcements first we'd all like to thank Charles today
28
for chairing today's session and doing a fantastic job and keeping us all reasonably well in time
29
only half an hour late, can I have a round of applause for Charles O'Mahony.
30
31
So I have four announcements to make, the first is all Soros affiliated delegates, all of you are
32
due to meet together, if you want to convene outside by the coffee tables we'll move to a room
33
down the corridor. That's the first. That's directly after we end here.
34
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Tomorrow we have a PhD student meeting directly after the programme, any of you undertaking
2
PhDs and want to meet and come together and share your experience and problems that's against
3
at the end of tomorrow's session and we'll meet again outside at the coffee stand.
4
5
The third point is that Helena from South Africa came to Gerard and I and suggested on Friday
6
at lunchtime there be an opportunity for discussion on learning and sharing practical aspects on
7
Article 12 and 19 in Africa and other developing countries, so delegates from African countries
8
other developing countries are welcome to meet at 1 o'clock on Friday in one of the classrooms
9
down here, MY129 and I will point you in that direction.
10
11
My final -- two more, we have had a lost notebook in the room, Yanna lost a notebook and she
12
really wants it back. It's a bound notebook with Amsterdam written on it, if anyone finds it can
13
you leave it at the registration desk.
14
15
Finally just to remind you that our barbecue is on tomorrow evening from 7.30 in the Radisson
16
hotel just in the centre of town, but there is a map to the Radisson in your programme so we're
17
getting things kicking off around 7.30 and music and dancing hopefully to start at half eight
18
that's it from me. Did you want to say something Gerard, no? That's it, see you tomorrow at
19
9.30 thank you.
20
21
Conclusion
22
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NUI Galway Summer School – 19 June 2013
A
abandoning 7:18
abide 52:20
abilities 11:22 19:22
ability 13:8 18:30 19:4
42:13 46:3 52:15
61:10 73:9 76:23
78:16,24 79:2 85:31
92:31
able 5:2 7:4 8:23 9:6
10:18 11:21 12:7
13:32 17:12 19:2
25:32 28:10 29:9
30:25,32 37:19 39:7
40:27 41:12 42:1
46:7,17
53:3,7,11,12,15 55:11
56:10 57:34 59:25
60:22 61:25 63:20
65:10 71:6 72:23
73:30 74:24,32 77:34
78:1,7 79:4,12 83:8
85:24 97:21 99:1
105:
abolished 35:30
abortion 20:1,2
about 1:21,22,25,27 2:29
3:12,28 4:28 8:29
10:4,5,14,15 11:22,34
12:1,3,20,31
13:5,17,19,34
16:3,4,15,22
17:9,20,22,23,28,34
18:4,21,24
19:13,14,28 20:8,33
21:3,18,31
22:9,11,12,22
23:14,15,23
24:3,4,5,6,7
25:8,12,16,31,32
26:12,25,28 27:23,24
28:7,19 29:
above 85:8 98:8
absence 96:9
absolute 2:3
abstract 42:5
abuse 1:17 6:1 64:18
73:31 76:21,24
abused 97:28,29
abuses 2:6 3:28 6:9 17:17
28:26 62:24 73:28
accept 43:15 52:29
53:22,23 86:5
108:31,34
acceptable 62:26,30
91:2,15,17
accepted 11:16
access 9:21 30:10 42:15
59:28,31 60:12 63:29
64:2 67:32 76:5,11
85:31 96:29
accessibility 60:13
accessible 27:32 31:7
36:16 57:9 64:3 75:2
83:18,27 96:26 97:9
accessing 27:29 51:4
98:18
accident 50:8
accidentally 106:12
acclimatised 1:7
accommodate 31:8 74:24
75:4 76:5,11
accommodation 78:31
accommodations 74:34
75:1 83:10
accompany 54:24
accomplish 77:31
accomplishing 84:23
accordance 55:34
accounts 18:28 24:5
accused 17:10
achieve 8:5 9:15
34:13,21,22 35:7 50:2
57:19 61:27 67:2,18
68:31 102:10
achieved 66:28 94:31
achievement 92:2
achieving 68:14,31
acknowledge 37:20
acknowledging 58:23
across 9:1 10:10 23:5
25:16,20 26:30 27:29
29:23,25,31
30:34,24,31 50:34
62:18 107:29
acting 14:30 29:8 43:32
50:7 108:33
action 2:6 16:28 18:33
42:12 58:34 59:13
60:34 66:6,29,34
67:20,23,24,25
79:34,1
actions 11:10 58:22
active 101:3 106:16,28
actively 92:34
activism 106:28 109:7
activists 94:7
actors 4:10 9:14 31:30
actual 39:6 81:23
actually
2:4,10,14,16,19,25,33
3:14,32 4:5,14,18
5:7,16,26,31,32
6:13,17,24 7:27,28
8:2,12,29,34
9:6,21,23 10:20,21,28
11:20,21,23 13:7
14:23 16:13
17:7,12,29 21:11
22:23,33 25:10 27:4
28:25 31:8 33:32
34:10,16 35:24 37:30
38:29,33 39:2,7 40:6
41:2 42:12
add 85:11 91:1,27
addictions 76:24
addition 25:11 33:18
80:26
additional 9:22 67:30,32
68:1 70:6
additions 33:18
address 1:23 21:28 22:3
25:15 35:5 49:29
50:32 51:18 59:7
64:23 67:25 69:24
70:32 80:28 88:9,15
90:8 92:14
addressed 34:2 51:16
80:24,26,28 92:10
addressing 31:19 38:5
adequate 72:26
adequately 69:32
adjournment 56:30
adjustment 16:14
adjustments 48:27 65:23
administer 74:27 81:21
administered 82:22
administering 81:22
administration 10:27
102:2
administrative 2:19
administrator 15:13
administrators 15:13
admirer 104:25
admission 63:8
admitted 60:8 75:10
ado 33:25 57:9
adopted 9:18
adopting 7:18
adult 20:29 24:17 38:10
74:22,23 81:29,31,34
84:15 85:1 87:18,24
adulthood 47:19
adults 1:17 68:16 71:3
86:6 99:15
advance 22:20
advanced 14:17
advice 8:10 47:2 108:17
advise 96:17
advised 8:10
advisedly 55:34
advising 20:10
advocacy 9:11 55:8 62:1
advocate 16:18
40:20,28,32 41:15
42:7 43:17
advocates 1:33 8:18
37:23 40:26 41:1
42:23 47:23,29 53:1,5
103:11
advocating 74:22
affairs 15:13 24:2 90:6
affect 26:20,29 27:8
40:7,9 53:21
affected 4:4 81:15
affects 40:11
affiliated 109:31
afford 5:33 27:22 28:20
97:31 108:20
afraid 32:26 38:11
39:10,11 73:4 104:34
105:1,2,3,4,5,12
108:5
after 10:9,33 11:26
13:21,34 15:13 32:27
36:15 43:10 45:7
48:22 51:21 56:18
57:12 74:17 75:10,12
98:12 101:16,23,26
102:9 109:33 110:1
afternoon 1:26
56:16,20,24,32,33
59:24 93:12
again 9:4 24:24,32 26:8
28:3,6,15 47:29
48:8,16 49:29 52:14
56:28 58:23 61:23
62:26 63:4 64:3,8,15
65:19 66:1,12,15 67:7
68:21,25 74:12 84:12
86:10 90:3 91:11
92:19 93:10 95:9
96:8 97:1,2,24 107:10
110:3
against 1:29 4:1 5:34
6:22 7:14,27 15:6
16:10 17:10 20:22
43:17,18 46:24,34
54:1,4 63:1,2 67:34
68:2 90:24 110:2
age 2:24 3:5,10 12:20
74:19 95:26 96:16
108:4
ageing 84:34
agencies 89:5
agency 90:4 96:5
agenda 98:29
aggravating 96:10,12
aggressive 88:8
aggressively 51:30
ago 12:4 13:13 33:33
41:15 47:32 48:13
98:4 99:4 100:11
104:29 105:20 106:18
agree 11:3 21:17 38:4
53:24 55:4 63:6
89:26 93:2 99:12
agreed 19:8 29:5 63:8
70:4 88:13
agreement 81:34
agreements 18:15 77:15
ahead 27:25
aid 5:10 69:18 108:18,20
aids 94:33
aiming 9:21 55:15 67:8
alcohol 76:24
alcoholism 76:22
alert 23:32
all 4:10,19 5:2,28 7:2,3,4
8:18 9:7,10,18,33
10:27 11:8,14,20
12:3,12,24,25 13:30
14:12 15:11,18 17:23
18:8,13,28 19:8
22:18,32,33 23:5 25:4
28:14,23 29:33
31:22,24,29,30
32:21,22 33:26,29
34:2,16 35:3,9,11,24
37:6,27 38:2,24
39:16,29 42:20 44:24
45:10,12
allies 94:7
allow 2:3 8:5 14:16 29:29
39:7 45:21 51:20
52:26 53:9,14,16
67:14 71:25 72:20
81:6 82:10 93:24
94:33
allowance 28:2,10
allowed 3:14 11:1,2
17:15 24:21,34 51:29
52:29 65:22,24 84:24
107:21 108:18
allowing 38:24 78:18
89:30
allows 2:32,33 4:4,9 5:30
7:28 12:13 31:17
51:32 54:7,11,22
84:28
almost 4:33 5:14,18 11:8
13:32 43:10
alone 47:15 80:19
along 14:3 22:15 27:15
36:7 85:24
alongside 56:22
already 2:11,32 28:8
36:8 64:8,26 69:23
88:2 94:4 97:13
100:11
also 1:29,32,34
2:17,21,28 3:7
4:3,28,33
5:14,17,20,25
6:4,9,21 7:1,4
8:1,19,32 9:13,17
10:5,31 11:3 12:24
14:20 16:24 17:20
18:24 20:20 23:8,14
24:12 29:30,33
33:12,18 35:33 36:8
38:11,14 45:13 46:22
47:10 48:10,14 50:8
51:10 53:9,20 55:25
56:4 57:3 58:1
alter 78:7
alteration 77:32
78:10,31
alternative 32:11 43:22
63:17,21 70:14
alternatives 28:13,20
45:26
63:1,12,26,31,32,34
64:24 67:27 68:11
70:2 98:19
although 4:4 5:30
15:8,19 16:32 19:12
38:4 45:30 56:3
64:12 91:4
always 13:32 30:7 34:33
37:32 41:27 46:30
48:2 54:2 72:1 77:15
78:2,20,22 80:31,33
81:1,11 101:5 103:1
105:28
amenable 109:22
amendment 7:7
amendments 16:13
amicus 72:17
among 3:18 7:2,3 25:19
27:29 39:16 90:8
93:29,31
amongst 16:14 36:21
54:26
amount 65:5 68:15
anaesthetic 49:15
analysed 3:33
analysis 4:12 8:30 11:18
76:31 77:27
anathema 64:15
and
1:6,7,10,11,13,15,16,
17,19,21,22,25,26,29,
32,33,34
2:3,8,15,16,17,18,21,
25,28
3:2,3,4,7,8,9,10,13,14
,18,24,29,33
4:3,6,7,10,11,22,28,2
9
5:16,17,18,21,22,25,3
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0,32,33
6:4,6,9,17,19,21,26
7:1,2,4,6,8,15,17,18,1
9,30,33,34
8:1,4,9,11,12,14,17,1
9,20,25,29,3
angle 91:21
angry 20:32,33 108:32
109:17
animal 54:4,5
announced 17:2
announcement 17:29
announcements
109:27,31
annual 82:34
another 23:12 39:14
51:8,16 53:9 54:7
55:13 56:1 60:1,16
61:23 63:11,16 73:2
82:15,16 84:11 90:34
91:13,21,25
answer 26:4,9,21 38:22
40:10 45:13 52:20,21
53:19 78:5 100:25
answered 56:3
answers 32:27 57:17,20
anti 90:22
anxiousness 48:14
any 2:3 7:16 9:32,34
10:10 13:9,30 16:15
20:22 32:5 38:14
40:22,31 41:4 43:4
44:12,23 47:1,6 50:14
51:6 56:20 57:18
63:11,13 65:2 67:34
68:17 78:6 80:8,12
83:4 85:8 87:29
89:3,24 90:26 92:6
97:7 99:9 104:14
106:1 108:34 109:22
110:1
anybody 75:33 90:15
109:21
anyone 21:27 25:9 26:9
30:6 39:12 40:14
41:3 45:33 110:12
anything 13:19 16:32
17:32 28:23 30:30
32:8 41:20 46:7,12
73:34 76:26 77:5
87:29 91:27 97:33
105:6 106:1
anyway 13:22 27:25
29:15 30:28 48:30
57:20
anywhere 51:13
apart 13:17
apartment 48:13 80:19
82:7 101:17
apartments 79:27,34
80:7 101:14,16
102:22
appalling 69:22,23
apparent 92:7
appeal 20:3 88:10
appear 13:6 21:28
appearance 86:29
appeared 5:15
applause 109:29
application 16:6 46:24
applied 24:13 25:23
applies 89:21
apply 15:17 27:31 34:19
39:16,18 47:14 54:15
applying 34:15
appoint 14:17 16:7
19:7,19 40:15
appointed 6:21 15:4
18:11,12,19 19:1
25:17 26:15 36:23
63:6
appointing 15:2
appointment 2:17,18
24:1,10
appointments 54:25
appreciate 48:15 88:6,8
appreciated 87:32
111
approach 10:24 26:2
42:6 43:30 50:12
55:14 71:30 76:10
78:20,34 93:11
100:24 101:4,13
approached 3:28
approaches 72:22 100:22
approaching 8:9
appropriate 14:31 58:30
65:31,32 74:9,10,28
77:27 82:29 85:21
89:12 92:5,9
appropriately 3:13
approval 92:11
approximately 79:25
apropos 51:25
are 1:5,7,24,25,32,33
2:2,4,5,11
3:13,14,18,19,20,24
4:18 5:10,11,22,25,33
6:34,1,2,5,6,19,22,26,
31 7:9,33
8:9,10,23,30
9:7,10,14,15,18,28
10:9,24,25 11:14
12:3,15
14:12,13,16,25,27,28,
29,31
15:11,19,26,28,34
16:3,4,9 17:7,9,29
18:9,12,30
20:11,24,30,32 2
area 12:26,28 23:20
33:29,32 57:3 64:2
71:10 91:15,25 95:3
109:4
areas 1:27 3:18
12:25,30,31 32:7,8
41:18 58:34 59:16,23
67:24 68:8 103:26
aren't 54:19 64:11 91:2
argue 2:4 53:4 76:25
92:7 108:32
argued 19:24 63:1
argument 2:5 6:31 24:3
27:22 76:22 78:6,20
81:18
arguments 3:33 6:32
76:23 91:14 101:32
arise 26:16 34:13,20 48:3
arises 12:30
arose 26:14 75:9
around 9:6 13:4
16:9,14,19,22,24
38:24 39:5,8,12 40:1
41:34 48:3,20 51:28
52:2,23 56:14 57:29
62:1,28 63:16,25
64:31 65:5 68:5 73:3
78:8 80:2 89:10
91:26 100:2 110:17
arrangement 90:20
arrangements 12:14,15
18:13 63:11
array 14:18
arrived 56:18
arrogance 104:3,5
arrogant 104:6
articles 13:18 31:25
39:25 45:30 46:3
58:27 60:2,7 64:6
66:24 70:6
articulate 36:9 50:6
articulately 52:34
ashamed 96:22
aside 41:10
ask 2:5 4:10 10:13 11:33
14:31 16:6 26:8,16
27:19 34:1,26 35:4,7
39:14 43:15 47:1
50:17,25,29 51:21
53:18 70:32 78:4
88:8 102:28 105:5
asked 14:8,29 21:29
26:20 29:20 35:13
43:14 53:3 69:6 77:9
88:2 93:33 95:10
97:33 109:22
NUI Galway Summer School – 19 June 2013
asking 8:9 10:31 16:5,8
42:20 71:19 88:16
asks 77:3
aspect 25:2 61:23
aspects 2:28 12:12 61:19
65:27 66:1 79:12
110:6
aspirations 61:24
assaulted 19:33
assertion 88:13
assessing 28:10
assessment 5:25,26
18:20 19:7
assessments 28:7
assessors 18:21
assistance 28:5 47:6,15
48:28 103:23
105:16,18,20,21,24,2
7
106:34,1,3,6,16,24,26
,27,31,32 107:1,14
108:9,12
assistant 48:28 70:27
assume 39:20 77:18
assumes 12:20
assumption 26:23
assumptions 75:22
assurance 80:14
assure 89:22
astonishingly 19:24
attempt 7:14 38:14
attempted 7:10 70:14
attempting 100:22
attempts 7:6
attendees 21:29
attending 109:24
attention 9:25 10:20 44:3
87:32 95:28 99:22
104:1,4
attitude 26:31 27:3,4,30
attitudes 27:6 30:9
34:21,29 37:29 96:16
attitudinal 39:30
attorney 17:2 70:27
92:16
attracting 98:17,18
audience 35:9,14 40:14
45:33 50:24,25 53:19
54:8
authored 1:15
authorities 20:1 70:13
98:6 100:31 101:30
104:17 108:6
authority 5:15 25:33
26:4,25 36:3,5,22
103:1
autonomous 29:9 43:3
44:13
autonomy 27:23 29:1,5
34:4,28 35:1 44:16
55:15
avail 31:19
availability 85:32
available 35:8 55:9 59:32
64:20 75:31 76:15
77:16 85:22 86:11
88:31 96:26
average 85:8
avoiding 44:23
aware 12:3 18:1,30 30:18
48:26 69:5 102:32
awareness 26:8 31:27
51:4,9 66:1 99:13
away 3:20 20:24 27:33
33:34 37:21 46:10
48:28 49:10 50:34
53:5 61:12 71:4 73:4
77:5 80:1 98:3,6
102:12 104:24
105:1,12,28 106:8,17
awful 104:5
Absolutely 33:4 49:10
55:4 59:25 69:4
82:28,29 83:27
Act 7:8 13:16,25 15:6
16:14 19:1 23:34
24:34,2,3,4,11,16,22,
23,24,26,31,33 25:4
28:5 31:16
35:4,13,14,19,23,27,3
3 36:7,14,21,23,25,30
37:14 38:4 44:3,24
48:28 71:10,14 74:7,8
79:34 84:28 89:20
107:2 108:13
Activities 1:32 8:8 58:2
65:10 74:28 82:22
83:21 86:6
ADA's 75:16
ADA 73:34 74:26 81:20
82:5,10,21 85:19
88:20,24 90:4,5
Africa 22:20 30:3 47:20
50:33 51:1,3 55:8
110:5,7
African 30:19 46:1,4
50:32,34 110:7
America 109:11
American 72:32
Americans 71:10 74:7
Amsterdam 110:12
Ann 11:28 37:2
Anna's 40:3
Anna 28:7 38:7,19
Annie's 21:26
Annie 21:26
April 22:23
Article 9:23 12:8 13:18
14:7 18:24
19:13,24,25 20:26
22:8,20,33
23:1,10,14,23
25:6,29,31 28:33
29:21 31:25,27 32:21
33:33 34:4,19
35:18,19 36:12,17
37:2,23 39:4,15,28
44:18
45:10,13,15,18,22,23,
29,30,31 46:27 48:10
49:2,3,26 50:27 51:33
52:21,22,23,29 54:
Assertive 80:1
Assistants 94:32
ATM 27:31,32
Australia 11:33,34
12:3,11,12,24,31
13:12 16:18 41:15
49:30 50:1 97:16
Australian 17:2,4,5
41:33
AUGUSTDOTTIR
104:23 105:34 108:30
Aviv 11:29
B
back 4:5 6:17 12:18
17:27 22:5,7 29:16
30:4 33:22 36:10,15
41:24 42:29 43:29
45:22 47:21 48:30
50:17,21 51:25 52:6
54:30 55:14,22
56:13,32 67:30 73:34
75:12 78:18 79:31
80:4,8 84:12 89:2
92:19 93:20 102:31
110:12
backed 33:21
background 22:11 70:28
backgrounds 43:27
backlash 102:9
backwards 102:17
bad 2:15,22 21:1
35:23,25 36:34 40:25
45:26 47:33 71:15,19
86:7 100:29,31
102:34 105:29
balance 34:4,29 44:15
47:22 48:6 53:26
balanced 34:19
balances 41:9,26 78:30
balancing 72:19
ball 88:32
banging 88:29
bankrupt 78:1
banks 27:30,32
barbecue 110:15
barred 64:19 70:12
barrier 63:11 66:12
94:32
barriers 17:3 27:11
30:22 51:14,16
63:4,31 66:10 96:24
99:23
base 76:16
based 1:6,20 4:7 10:14
11:4 15:19 22:30
57:1 63:1,29 64:24
66:11 67:27,33
68:6,9,11,13,18,23
69:5 75:30,31 76:16
77:21 78:6 79:14,26
84:11 86:21,28,29,34
87:18,22 90:32 93:33
94:16,20 95:4 97:6
basic 4:11 7:17 14:29
36:25 74:29 78:25
81:5
basically 21:20 22:24
24:9 40:20 41:20
60:8 62:16 90:5
basis 3:33 9:7 12:12
15:34 27:24 29:30
35:6 36:4 72:22
77:20 99:5
basketball 83:6
battered 83:26
bear 44:18
bearers 39:22
bearing 46:6
beating 72:7
became 19:34 26:2
because 1:28 3:27,33
4:22,23 5:7,33
6:12,20,32 7:8,28,29
8:10,25 9:21 10:15,25
11:5,9,16,17 12:7
14:12 16:30 17:13
18:23 19:22,25
20:3,10 21:7,20,26,29
23:12 24:4,23,28
25:10,22 26:23
27:3,21,22,32,33
28:4,7,22,27,33 29:34
30:7 31:17,18,27,32
32:13 33:11,
become 41:6 51:30 53:12
102:1 103:19,24
105:1
becomes 25:20
becoming 24:17
bed 65:6 86:11,12,16
bedroom 80:19
beds 81:1
been 4:30 6:8 8:14
9:2,3,31,32 13:8,12
14:6,7
16:17,21,24,27,31
17:13,14,17,21 18:4
20:32 21:18,27
22:7,14,20,22 23:15
24:27,33 26:15 27:25
29:16 33:19 34:2
35:3 38:29,34 40:16
42:29 47:7 50:9
55:27 56:10
57:2,14,29,32 60:7
61:34 62:1 63:6
64:2,9 68:5 69:
before 2:23,24 9:7,33
14:11 15:2 17:12,32
18:13 19:12 23:13
25:29 30:4 33:1
39:25 42:10,32 45:6
49:18,26 51:17,18
52:10 53:19,26 56:13
57:27 69:11 70:29
87:16 99:5,14 100:15
104:34 105:20 106:1
109:20,22,25
begin 46:11 49:1 54:5
beginning 1:27 7:8
44:31,33 53:29 54:6
69:5 70:7 71:18
78:29 100:23,26
101:23,27 104:29
105:25 106:24
beginnings 28:5
behalf 6:32 12:14 14:23
15:7 19:1 24:34
26:23 35:29 54:23
55:25 56:12 72:11
behavioural 88:12
behind 14:13 49:2 50:28
being 5:1 6:1,2,22,27 9:8
11:6 14:27,29 18:2
20:30,31 21:17
24:13,23 25:23,32
29:9 30:24,30 32:3
35:6 36:30 37:13
39:21 40:1 42:12,15
46:13,27 55:13 58:15
59:25 60:8,22 62:3,34
63:12,13,20,34 64:3
66:16,17,18 69:6
70:1,20 72:13 73:14
76:25,26 77:34 80:17
beings 61:15 62:4
belief 103:30,33
believe 4:10 5:21 43:32
77:21 92:23 94:31
believing 20:18
belonging 96:10
below 84:29
benefit 16:7
benefits 8:12
beside 49:12 56:26
best 8:1 15:30
19:10,20,26 20:20
21:20 22:25 32:12,13
34:15 35:7,15 36:34
37:15 38:5,23 41:3
42:18 43:22,32
44:3,9,28 45:7,23
47:12,13,18
49:29,30,33 50:7,14
51:8,10 53:26,32 54:1
56:1,23 62:29 89:24
92:8 103:16,17 104:4
better 8:5 20:30,32 33:15
35:25 41:32 43:24
47:33,34 48:4,33
52:21 53:7 55:29
62:16 68:18 71:16
72:7 77:22 78:6 90:8
93:21,25 96:20
97:4,17,19 98:12
101:30 103:18 104:18
between 1:28 3:10 4:28
5:22 15:12 18:11
19:31 20:34 21:7
22:23 28:21 33:13
44:15,22 45:26 46:21
47:23 60:2 62:14
69:34 77:11 84:5
89:5 91:31 92:28
95:26
beyond 24:13 44:4
bias 72:29 81:5,7
bid 54:12
bidding 102:29
bids 3:23
big 13:13 15:13 17:28
23:13 27:8 28:4,33
30:3,25,32 31:9 32:18
37:3 65:17 75:16
80:9 81:14 86:10
94:21 96:22,24,26
100:7,29 103:13
104:16
bigger 75:34 103:25,32
106:33
biggest 2:15 47:30 51:11
104:3 107:24
billed 73:16
binding 65:24
bird's 99:32
birth 16:6 26:33 96:16
bit 2:29 16:25 17:20
22:9,11,12,22
23:9,23,32 24:7 26:28
27:14,15,20 28:1
Premier Captioning & Realtime Ltd.
www.pcr.ie
29:20 31:33 34:1
39:34 43:24 51:22,23
54:18 59:3 61:18,34
65:4 68:5 93:27 94:7
102:9,27,34
bizarre 11:13 16:29
black 3:29
blame 40:21
blanket 87:23,29
blind 23:4 26:20,22,23
27:28,30 72:29 74:32
84:1
block 86:17
blocks 63:34
board 13:34 25:16,20
27:29 29:23,25,31
30:24,31 75:18
103:14
bodies 2:9 64:25
body 23:5
bond 20:34
book 33:7
books 11:30
bore 35:14
boring 55:32
born 46:5
borne 92:2
both 1:26 5:15 7:6,34
10:12 20:4 30:21
47:12 48:9 49:27
50:6 62:6 73:7 74:16
75:31 82:20 88:16
89:6 91:31 92:23
93:13 95:2 98:29,33
99:3,10 107:24
108:2,26
bother 10:27
bottom 40:3,6
bound 110:12
bounded 11:23
box 66:8 82:16 84:11,12
92:13
breached 69:26
break 9:34 32:27,31
46:16 56:13,16,18
89:4 90:16 93:18
breaking 54:29
breath 17:22
bridge 56:27
brief 21:5 22:12 51:21
briefing 13:6 22:24,25
23:25
briefs 72:17
bright 109:25
bring 17:12 19:30 28:28
38:15,33 39:15 42:10
72:9 73:19 75:6
78:22,33 79:2
89:26,27
bringing 8:21 22:33
24:11 28:30 74:14
brings 11:13 26:16 39:4
broad 13:1,15,23 14:16
15:18,33 16:30 17:21
99:31 100:4
broader 24:13 65:26
broadly 12:3 13:5
brother's 25:17
brother 26:23
brothers 25:17
brought 4:1 18:33 37:7
42:15 71:23 72:34
75:20
brown 75:18
budget 78:25,26,28,29
102:2
build 32:21 36:16
47:22,24 48:7 51:30
52:12 54:6 80:2
86:11,12,15,16 97:7
107:30
building 31:30 47:28
50:14 82:7 84:17
86:18 87:4 96:6
buildings 27:8 97:2
98:11,12
built 90:4
bulk 24:4 25:7 52:1
112
bullied 72:30
burden 10:15 78:10,31
bureaucratic 16:9
burning 9:32,34
bus 74:11
bushy 109:25
but 2:2,15,33 3:12 4:23
6:20,24 7:10,11
8:26,31 10:5,20 11:18
12:12,25
13:8,16,19,22
14:11,13,22,29 15:3,6
16:9,21,28,32
17:1,13,14,20,21,23
18:9,13,17,30
19:8,9,27,28,31
20:8,14,20,24,34
21:7,13,33
23:29,30,32
24:12,19,27
25:4,8,14,23,24,25,30
26:25 27:1
button 85:3
buttons 82:16 84:11,12
Bach 18:1 38:9
Balkan 8:24
Balkans 1:13,21
Bank 96:4
BASSER 11:28,34
17:5,9,28 19:28 20:27
21:4 37:3,6 54:12
Belfast 49:17
Belgium 95:15
Bio 70:33 93:25
Blatt 70:30,31
Bosnia 8:25,32 9:3
Boston 56:27
Braille 72:32
Bulgaria 69:22
Burton 70:30,31
BULIC 56:22 93:22,27
C
cadre 86:11,12
caesarean 29:29
call 17:22,25,26 41:20
44:10,26 49:26 63:12
71:14 79:34 82:16
93:12 99:34 104:15
called 1:16,20 2:21 8:24
14:25 19:16 25:11
35:29,33 36:10 42:24
61:13 62:29 74:26
75:8 81:29 83:24
95:17 99:32 101:1
104:16
calling 36:18
calls 14:7 41:23 82:28
89:24
came 7:7,14 12:8 16:32
18:34 19:34 26:30
27:27 28:13,25
29:6,25 30:3,5,19
31:22 32:9 36:7 43:6
49:2 55:22 62:15,19
107:1 110:5
campus 86:16
can't 14:3 20:15 27:22
30:9 43:4 44:34
45:1,22 47:14,15 49:8
51:30 52:13 53:32
60:3 63:33 64:4,12
70:34 71:1 73:30
75:4 77:17 78:11
83:7 84:32 85:19
90:25 91:4 92:3
97:31
can 2:10 3:12,20,21,24
4:33 5:11,22,31
6:1,4,6,32 7:29,30,33
8:12,14,19 9:17,22,33
10:26 11:26 13:4,21
14:23 15:11,17,28
16:9,28 17:23 18:21
19:7 20:5,15 21:25
22:27 27:10 28:3,27
31:28 33:15 34:26,27
35:29 37:34,2,29,30
38:13,14,33
NUI Galway Summer School – 19 June 2013
39:1,6,11,19,24
40:4,6
cancelled 101:26,28
cannot 21:3 28:20 32:18
46:10,11,29 67:13
88:23 96:18 108:20
cans 62:3
capable 75:23
capacity
1:13,21,22,28,34
2:5,11,23,28,29,34
3:5,17,20,24,25,30,34
4:5,6,16,19,24,29,30
5:6,8,16,26,28,31,34
6:2,4,13,14,15,26,27
7:3,20,21
8:10,11,13,18,20
9:34,11,12,17
10:3,6,13,28
11:4,8,9,14,24
12:3,7,11,20,21,25,30
,32,33 13:28,30 14:21
15:30 17:11 1
caps 87:28
card 27:29
cards 27:31,32 84:20
85:9
care 3:3 17:15 19:7,17,21
20:21,26 21:13 32:2
36:21,31 50:25 61:13
62:29,30 64:24 67:19
68:9,12 69:22 70:12
71:24 72:26
73:11,14,25 81:30,31
82:34
95:4,13,15,21,22,27,3
2 96:11,15,20
98:11,34 101:3
102:23,29
cared 96:20
career 30:31
careful 2:2,8 6:31 53:31
71:25
carer 17:15
carers 36:3
cares 52:19
caring 18:29 19:9 20:17
carpenters 30:29
carried 23:3,8
carry 29:29 30:7,19
51:22,23
case 1:23 2:24 3:9 7:2
10:31 13:7,10 14:3
15:4,5,7 17:34
18:27,34
19:13,16,21,22,28,29,
33 21:4,11,15,25,27
23:20 24:11 25:22
33:33 34:14
37:8,11,17,19
40:7,9,21,26 44:24
50:18 53:33 68:11
69:11,18,21
70:11,24,32 72:17
75:9,18,32 78:22
79:21,22,25 80:2 81:
cases 4:19,27,33
5:5,7,14,18 7:2 10:24
11:6,8,23,33 20:10
24:32 34:9,22
37:2,7,27,30,32 38:8
55:33 63:8 69:6,7
70:18 71:11 72:9,17
78:25,33 79:2 83:12
87:14 108:21,25
catalyst 78:2
catch 90:20
cater 98:22
catered 96:20
cause 10:31
causing 77:32
census 87:9
central 95:11,14,27 96:3
centralises 28:34
centrality 31:3,11
centre 1:6,19,20 5:15,17
6:25 22:1,7 33:28
34:14 48:9 88:10
91:32 98:25 110:16
centred 97:3
centres 6:8 8:10 80:28,29
cents 84:31
century 5:22 62:26
certain 4:11 5:31 7:15,29
11:7 12:21 35:21
41:7 44:11 67:13
82:6 87:23 96:10
certainly 12:27 33:9
36:34 58:16 62:6
79:18 94:27 96:16
certificate 16:6
certifying 11:5
chained 50:34
chairing 109:28
challenge 45:32 49:3
56:9 72:9
challenged 12:26,34
13:30 18:31
challenges 7:33 11:32
12:1 23:31
93:23,26,34 98:10
99:27 107:24
challenging 12:17 49:7
62:8,26 108:8
chances 40:11
change 8:5 13:14 14:9,11
17:30 34:30 37:29
39:30 45:11,14 72:19
80:4 99:12 100:21
104:20 105:23 109:2
changed 8:1 14:6 73:5
79:22 104:15,32
changes 5:30 7:9,10
73:23
chapter 18:8 68:11
chapters 100:20
character 73:25 98:19
charge 102:6
charged 17:15
charity 26:30
charter 37:9,17,19 60:29
64:26
chat 88:2
cheaper 73:2
check 68:22
checks 41:9,26 80:17
cheese 52:10
chicken 39:27
child 19:10,17,20,21,29
20:4,5,10,20,22,24,26
21:5,9,22 24:17 27:4
32:6 33:20,22 40:31
45:4 47:18 51:11
52:27 53:34 96:17,22
childhood 47:19
children's 24:16 33:23
children 1:17 3:19 12:21
20:29,30,31,34 21:1,8
25:17 27:4,5 46:6
47:9 51:10,14,18,27
52:26 53:14,32,33
54:2 57:4 68:16 71:3
72:33 74:22,23 80:15
88:12,26 89:9,14,32
95:26,27,29
96:11,15,28 97:34
99:15 105:11 106:21
choice 28:21,23 43:3,34
44:10,11,13 45:24,25
50:19,20 53:7 54:28
56:33 59:24 61:11
63:11,12,16,18,22
65:22 77:11,15,17,24
83:9 85:30,31 87:26
92:32 93:1,2,3,5,21
choices 30:32 36:4
45:26,27 52:26 53:17
58:29 59:4 61:2
63:27 65:31 80:15
85:21 86:12,13 89:31
93:6 94:28
choose 3:19 41:17 51:22
59:23 61:20 63:17
65:16 76:34 77:12
79:28 85:24 92:31
chooses 20:34
choosing 26:3,4 70:13
chords 84:10
chosen 65:8
chunk 23:13
church 30:4
circles 91:33
circulated 13:14
circumstances 14:21
16:8 24:10 32:14
cities 82:23
citing 20:1
citizen 103:22
citizens 57:34 59:33
62:12 101:21
citizenship 3:21
civic 61:7
claim 35:21 36:15 42:10
84:6
claims 72:11
clarified 33:1
clarify 33:15 92:10,15
clarifying 16:14
clarity 90:17 91:16
class 21:34 22:2
72:11,13,14,15 74:16
78:34 79:1
classes 72:18,19 83:9
classic 43:4
classification 34:33,34
classroom 74:15
classrooms 110:8
clause 37:18
clear 3:13 17:12 25:9
29:30 35:18 37:6,29
39:24 61:19 64:24
66:29 72:1 73:30
81:20 83:7 97:10
102:17
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109:26
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86:29
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88:31
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100:31
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109:10
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91:26
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32:15 38:8,18,19,30
39:14 40:24 41:20
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63:18 66:10
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105:13 106:22 108:19
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100:32 105:13
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55:19,20,21 62:20
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71:3 94:21,23,24
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100:4,10,14,17,21,26,
28 101:5 102:1,3,32
103:8 104:2,5 106:31
109:9,12,14 110:7,8
NUI Galway Summer School – 19 June 2013
country 9:13 10:8 16:24
22:13,20,34 23:6
26:14 27:18,23 50:14
66:32 74:11 77:2
87:9,11 97:16 106:12
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94:2 109:21
course 9:4 10:3,24 20:24
25:24 36:26 47:23
53:29 94:17 98:3,4,6
108:12
court's 55:31
court 2:33 3:15,32
4:15,33
5:1,3,12,17,20,27,32
8:4,8 11:20 15:2
18:33,34 19:6,7,24,25
20:2,3,4,7,9 21:21
22:17 24:11,33
25:1,15,19,20 26:25
33:3,32 34:15 35:29
37:17 40:7,9,33
42:10,13 49:24 53:34
54:4
69:11,12,19,26,30,31,
33 70:7,8,19
75:8,15,18 76:31 7
courts 4:11 6:8 20:4
34:23 45:12 69:6,7,17
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70:6,21 74:27 81:20
82:21
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36:8 92:1
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76:12 87:30 100:24
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16:27 92:10,12,17
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80:7,8,9
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60:11,13 66:21 67:29
69:11
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14:11 15:10 17:31
70:29 77:32 101:23
102:34
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Camilla 56:22,33,34
57:10,11 70:23 87:34
90:16,17,21 94:4
95:6,7,9,13,19 96:9
97:13
Canada 49:30,34 97:16
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Carney 13:22
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53:18
Charles 1:5,24 22:5
31:13 58:7 99:30
109:27,29
Cher 41:15
Christina 50:18
CHAIR 1:5 9:26 10:12
11:25 21:30 32:25
33:4,26 37:2,5,31
38:20 39:14 40:6,14
41:1 42:7,17
43:1,12,26 44:9,29
45:19,33 47:8,21
48:34 49:28
50:16,23,28 51:20
55:24 56:32 70:23
87:33 88:28,33 90:11
93:12,20 99:23
104:24 109:19
Ciric 1:11
Civil 4:9 7:6 8:1 24:9
35:33 66:23 70:27
71:9,14 74:1 75:20
89:19
Clare 54:33
Commission 14:8
17:3,4,5,6,21 18:6
22:3,19 25:28 29:33
36:30 68:7 97:25
Commissioner 61:30
64:16
Conclusion 11:10 110:21
Convention 9:23,28
12:4,6,13 13:19
29:4,5 31:22 36:25
37:7 39:29 46:4
51:33 52:29 56:21
57:19,30 58:27,28
60:2,16,17 63:2 64:6
65:27 66:1,2,4,22
69:3,7,12,19,31 70:1
90:13 91:8,11,12,13
108:13 109:6
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62:7 64:26 96:4
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Croatia 9:4 93:33
CRIPA 89:20
CRPD 11:32 14:6 16:12
17:24,27 20:26
22:11,14,17
23:10,13,24 25:29
35:19 36:26 45:13,30
46:1,23,25 57:9 58:24
61:31 67:6,34 68:3
69:6,9,14,17 100:10
103:22,26
104:2,4,8,20
Czech 8:25,26,27
D
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65:19
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54:23
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15:34 27:28 50:34
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83:21 84:12,13,16,17
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100:32 109:20,24
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26:20,22,23 72:29
83:14,29 84:2
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31:17,18 34:9,32 35:5
37:21 38:2 42:20
48:6 72:27 73:4,14
75:16 80:2,7 81:29
85:18 87:14
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40:33 55:14,33
103:12
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89:1
dear 15:30 29:6
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66:23
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decentralisation
101:26,34
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41:18 52:33 100:32
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20:4 47:31 81:17
87:26 105:5 106:23
108:27
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28:21 85:27 97:7
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13:15,17 14:13,17,20
15:8,11,12,21,23
16:17,19,20
18:2,4,5,9,11,12,17,1
9 21:11,12,23 26:13
27:17 28:22 29:19,25
31:17 34:13,14 36:13
37:34 38:19 39:31
40:7
41:2,6,14,17,18,21
42:8,13,32 44:15,23
45:7,21 46:7,18,22
47:3,28,30,33 49
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5:20,22 7:3,20
10:20,22 11:20 12:14
14:4,23 15:7,34 22:17
25:32 26:7,25,28
27:20,21,28,33 28:3
29:9,26 30:13,16
31:33 33:13 35:29
36:2 42:16,26 44:34
45:1 49:8,9 51:29
52:9,19,20
53:12,20,21,23,24,25,
31,32
54:7,14,15,18,19,23
55:1,2 56
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77:24
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49:10
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dentist
38:11,12,15,26,33,34
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18:30 19:30
70:25,26,28 71:9
88:14,23,30,31
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4:34,5,6,18,19,29
5:6,34 6:4,5,26 7:2
8:10 9:1 10:6,13
11:4,9,14 24:9
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36:1,3,31
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4:24 5:28
6:2,12,14,15,27 7:28
10:28 11:8 26:25
36:4 60:8
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63:18
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95:28
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59:3
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19:26,30 21:11,17,28
36:2 37:12 43:10
45:24 62:20 73:14
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89:16 100:31 101:34
Premier Captioning & Realtime Ltd.
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105:29 106:1,2,5
108:32
die 20:11 21:31
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103:14,27 104:26
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8:11 10:24 12:30,33
15:19 16:21 18:9
22:32 32:23,24 35:24
37:25 38:33 44:23
49:25 52:8,27,28 56:4
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66:24 74:3 93:24
94:23,24 100:12
103:2,4 106:21
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difficult 27:1 30:10
32:13 33:11
34:10,22,32 44:22
47:13 50:32 58:14
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107:33 108:15,21,28
109:8
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42:7 43:5
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42:17 43:6 47:10
51:11 55:2 107:16
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31:1
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105:17 106:26 107:1
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105:32
disabilities 1:17,30
4:20,22,24,25
8:6,19,31
10:4,10,21,24,34
11:22 16:27,31
17:3,10 20:15,28 21:2
22:15,34
23:4,5,8,9,10 24:14
25:4 26:2,6,29,31,32
27:3,13,14,19
29:7,19,20,23,24,25,2
8,33 30:16,17,19,24
31:2,16,32 32:3,21,22
35:20 36:4 37:18
38:10 39:21,
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7:16,20,24,29
10:4,18,25,26,32
11:30,31 12:11 13:32
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16:5,13 17:31
18:10,12,28 19:16
22:8 23:5
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29:30 30:1,5,6,21
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34:6
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42:24 46:6,8 47:2,7
50:7,15 59:4,33 72:33
82:34 94:9,10,23,33
95:15 96:15,26 97:8,9
99:4,13 101:21
102:11,21,30 103:27
105:22 106:21
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114
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52:23
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68:27
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34:18 35:4,8 39:13
42:30 43:6 47:17
57:17 60:1 70:21
91:21 110:6
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25:12 61:23 91:26
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90:23
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21:13 25:18 26:16
36:16 39:19 40:24
41:3,6 45:25 47:10
51:12 53:33 64:12
77:17 78:5,10 80:12
81:19 82:10 84:29
85:19 87:15 90:4,32
91:4 97:32 99:28
104:31
doing 1:25,32 8:1 22:22
23:31 27:19 29:21
32:13 41:34 42:5
44:13 48:24 51:8
55:22,23 57:3 59:7
62:11 66:7,30,34
67:4,10 84:9 85:1
87:19 89:22 93:2,30
103:17,18 104:3,17
105:33 109:28
dollar 28:19
dollars 87:25
domain 34:9
NUI Galway Summer School – 19 June 2013
domestic 37:4,7 69:18
dominated 25:34 108:6
don't 2:14 10:27 12:26
19:8 25:18,29,30
27:3,20 29:11 32:14
35:14 37:29 38:5,20
39:12,31 40:21
42:15,22 44:12,16
45:24 46:12 48:19
50:33 51:5,6
52:7,9,15,21,22,24,25
53:21,22,25 55:27
56:20 57:4,17 61:24
63:17,25 72:17
73:4,34 75:5 76:33
77:4,5,9,10,12 78
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20:28,33 23:30,31
26:17,25 30:6 35:24
38:30,33 39:2,6,8
40:4,5 41:14,26 45:32
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92:11 105:12
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87:16 88:29
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28:28 34:2 39:15,34
40:2 52:4 54:29
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98:12 99:3 100:24,34
101:13 102:26
103:19,31 109:33
110:9
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103:18,31
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109:32
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104:14,16
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21:15 25:8,9 33:33
35:28 36:7,10 42:4,28
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82:29 84:15 85:3
88:4 91:28 99:9
103:26 104:14,31
108:31,32 110:18
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42:34
Dragana 1:11,19 9:26,33
11:25
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E
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Premier Captioning & Realtime Ltd.
www.pcr.ie
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105:31
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53:18 57:27 100:16
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34:19 49:34 54:15
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46:1 49:21 51:34
64:3
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97:15,25 98:29
99:10,19
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Expert 19:7 33:20 93:31
95:4
115
F
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35:34 81:12
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102:3
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43:2,3,13,17,19,23,28
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96:20 107:24,32
109:13
feels 22:31 39:1
fell 19:9 71:32,33
NUI Galway Summer School – 19 June 2013
felt 19:17,20 21:20 23:15
29:34 69:31,32 70:5
105:31,32
fetch 30:20
feted 33:11
few 5:7 22:12 23:24,25
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52:32 57:16 58:22,23
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104:2 106:31 107:27
109:26,27
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105:17,22 107:17
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27:20,21,28,33 30:12
63:31
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53:34 54:33 57:16
63:30 64:4 65:5
70:14 80:19,21 82:33
86:8 103:17
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105:10
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92:14
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25:1 28:6 48:21 65:2
77:11
glad 106:8
gluing 84:9
goal 67:11,18 68:1,2
goes 12:30 24:29 28:6
48:30 52:1,2 54:16
67:30 80:34 91:13
97:23
going 1:21,22 3:28,29
9:10 10:28 11:32
12:3,31 13:19 15:4
16:15 17:34 18:8,23
19:6 20:11 21:5,6
23:22 25:31 29:16
30:6 31:19 32:33,34
33:4 34:26 35:7,8,10
39:28 40:11 45:20,21
46:7 47:29,31
48:3,12,20 49:9
50:3,21
51:20,21,22,26
53:23,34 54:29
55:9,22 56:
gold 22:1
golden 100:14
gone 25:17 42:30 81:27
97:13
good 1:24 2:14 3:12,27
10:2 12:12 17:13
21:2 22:5 25:10,12
28:27 32:26,33 36:20
37:4,29 40:11 41:14
45:17,24,25 46:27
48:2,3 49:13 50:23
52:20 53:29,31 63:23
70:26 74:22 80:18
84:6 94:22 97:14
98:32 100:23,29,30
102:30,34 103:21
got 16:9 17:4,8 20:27
22:30 39:34 40:9,20
43:9 45:26
52:8,9,12,18 56:9
58:28 59:12 60:29
61:10,11,30 62:23
67:23,30 68:6,13 71:4
74:12,22 75:32 80:32
82:20 91:16
105:20,34
106:5,6,7,11,15,16
107:20 108:25,31
gotten 105:27 107:29
government 7:6,7,34
13:14,15 16:5,8
17:30,31 23:19 27:23
48:18,26 62:3 65:14
66:7 67:26 88:16
89:23 91:21 98:20
governmental 63:32
governments 9:22
62:7,11,12,33 64:27
67:7 68:5,8,12,17
71:12 74:27 97:19,25
grab 36:10
gradual 92:22
graduate 74:19 85:15
87:20
graduated 21:34 105:27
Premier Captioning & Realtime Ltd.
www.pcr.ie
grand 21:8,12 25:24
grandparent 21:31
grandparents 19:31
20:11
granted 59:8 61:9
grass 40:2 55:7 94:22
gravity 91:32
great 2:2,5 7:23 9:32
28:14 30:22 33:27
35:28 36:26 37:32
69:34 70:31 73:14
77:6 80:2,7 93:12
98:20 99:20
101:11,30,34 102:5
104:8,25 105:31
108:1
greater 29:24 40:12
92:30
grew 71:14
gritty 37:5
grocery 85:10
ground 10:10 15:21,22
24:24 26:18 30:9
31:28 32:9,15 36:8
38:2 43:11 55:11
69:16 92:3
grounds 37:21
group 7:8,9,11,16 23:8
28:25 33:29 43:6
76:14,16,17,19,27
77:28 78:14,33
79:2,27 86:11,12,16
93:31 95:4,6,11,23
96:10 98:20,22
100:25 101:14
102:19,20 106:32
grouping 76:28
groups 102:17,20,21
103:12,13
grow 45:4
growing 36:22,30 58:23
grown 102:19 103:24
growth 52:15
guarantee 54:30
guarantees 5:34
guardian 2:17,18
5:5,14,16,18 6:21
10:26 15:1,2,4,23
16:7 18:34 19:1,18,22
21:12,15,16,17
24:2,6,10 25:18
26:14,15,16 38:18
47:13 63:8
guardians 15:5 35:34
63:6
guarding 77:2
guards 36:22,32
guess 49:33 84:17
guidance 44:14,16
guide 107:13
guidelines 3:13 16:20
32:15 68:7 95:6
107:8,9 109:7
guiding 15:26
guilty 52:18
guise 34:20 35:6 56:1
guy 17:14
gym 74:15 85:10
Gabriel 50:29
Galway 1:6 9:2 48:13
55:22 56:26
Genio 40:17,19
Georgia 75:9,10
79:21,22,23
Gerard 56:12 90:29
91:23,26 110:5,18
Germany 90:14
Glor 69:11
Guardianship 3:2 5:9
12:31
13:6,9,21,23,25,27,29
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15:10,12,17,18,22,25,
26,33,34 16:1,5,9
17:1 22:18
23:28,29,30,34
24:3,13,16,19
25:9,14,26,30
116
26:3,8,9,12 31:20
35:33 49:2,22,25 52:2
63:5,7 64:10 91:5
96:23
H
habilitation 60:11
had 2:9 3:23 5:7
6:18,26,27 7:9,14,24
8:8,17 9:11 10:31
13:14,29
16:28,29,30,31
17:10,13 18:13,18
19:3,16,26,31 20:4,10
22:23 23:8 26:6,8,15
27:28,31 38:7 40:1,24
42:1,25 43:6,12 48:13
49:2 51:13
69:23,24,26,28,32
70:6,12,13,15 71:29
72:24 74:24,29,31 75:
half 4:29 33:33 95:34
100:4 109:29 110:17
halfway 29:10
hand 8:4 19:32 31:4
33:25 34:5 40:3
42:19 43:8,11 44:14
57:10 61:25
handbook 107:8
handle 50:12 79:10
hands 29:12 109:22
hang 36:9
happen 19:27 25:18
29:31 41:3 42:11,23
45:31 59:13 65:1
66:20,33 73:30 80:12
97:34 106:13 107:4
happened 17:32
19:27,33 30:8 74:8
81:14,15 102:1
104:31
happening 9:26 16:25
25:24 28:26 36:8,27
42:13 89:17 97:23
98:26 99:6
happens 10:11,33 13:10
21:7 25:7,20 26:21
30:31 31:4 38:25
42:28 45:3 53:33
59:19 80:2
happier 20:32
happy 21:27 94:11 104:9
106:11
hard 35:13
37:2,7,27,30,32 48:21
78:22,33 80:21 90:6
97:18 100:31
107:17,26 109:6
harder 34:9 72:32
hardly 28:23
harm 43:33
harmful 75:18,22
harp 52:7
has 1:12 2:22,30 4:20
7:20 8:14 10:32
11:11,29 12:21,34
13:8,12,15 14:6
15:10,18,21,22,25,29
16:18,20,24,27
17:17,21 18:4,28
19:13 20:14
21:13,18,23
22:2,14,22,32
24:27,33 26:14 27:17
28:7 29:19 30:31
31:24 33:21 35:4
37:18 38:11,34 39:12
41:11 42:10,13,2
hasn't 6:8 9:32 16:21
17:14 23:15 33:19
40:16 64:9 81:14,15
88:33 109:22
hate 92:12
have 1:10 2:5,8,14,21
3:29 4:30
5:11,17,23,31,33
6:14,21 7:11,23,28,29
8:23,32
9:2,6,20,21,31,32
NUI Galway Summer School – 19 June 2013
10:25,26,27 11:18
12:21,25,26,34
13:12,21
14:6,16,20,25,32
15:1,10,14,21,22,23
16:1,3,17,25
17:1,11,29,30 18:13
19:8 20:8,20,28,31,32
21:7,13 22:7,17,20,22
23
haven't 7:2 10:17 13:16
35:24 38:29 61:11
88:2
having 1:7 4:18,23 12:1
13:16 17:29 20:21
22:7,14 23:22 29:30
31:15 37:6,13,23,27
40:16 46:10,11 64:27
65:20 67:27 70:11
72:10 73:19 76:16
80:4,8 89:10 91:26
94:28 95:12 96:22
103:25
he'll 77:18
head 109:23
heading 12:28 25:10
health 13:12,16,19 16:26
23:34 29:23 31:16
35:4 36:1 37:11,14
57:2,4 60:26 68:22
72:27 75:9,34
76:34,8,28 79:34
81:25 82:19 84:1,27
86:30 89:6,12 90:8
95:23 97:9
healthcare 28:14,16,26
29:26 32:18 36:21
73:24 76:8 82:12
86:7 96:18
hear 5:22 10:18 23:34
32:5 50:33 60:4,16
63:22 80:14 97:26
106:11
heard 5:1 12:1,24 15:33
18:34 19:21 21:21
25:16 27:29,31 28:27
30:24 38:24 47:1
49:18,29 55:7 63:7
64:3,31 72:6 91:32
93:28 94:16 96:19
101:32 105:16 106:7
hearing 18:20 60:7
heart 21:34
heavily 95:15
heavy 98:12 101:27
heck 92:20
held 14:1 19:25 37:11
69:33 70:6
hell 52:18
help 6:24 7:24 14:29
20:5,7 36:10 39:19
46:12 47:5 49:15
50:29 51:4 53:3
58:17,24 61:27,28
68:5 79:28 80:3,7
82:14 83:22 106:3
108:17
helped 39:13 41:17
105:13
helpful 9:3 69:16
helping 36:3,12 47:3
helps 73:26
hen 77:1,2,7
her 1:15,21,23 3:4,8,14
11:33 18:29,30,33
19:1,4,17,19,20,21,22
,26,34 20:1,7,25,26
21:13,26 42:25,26
43:11 44:5 53:6
54:24,25,26,28,29
56:22,23 70:29,32
93:25 95:7 99:28
herald 18:27
here's 46:31 67:8 77:11
here 1:5,19,20 2:2
4:18,25 7:24 8:27
9:2,14,25 12:7 13:21
14:22 16:2 17:8
20:24 21:34 22:1,7
25:7,10 29:16 33:27
37:5 38:9 46:2 48:9
49:34 52:26 56:26
62:17 67:30 71:20
75:32 77:13,18,22,25
79:6 85:18 86:25
92:13 96:28
99:22,24,31 102:26
104:9 105:33 109:
hers 20:14
herself 93:25
hidden 98:3,6
hiding 96:22
hierarchy 54:23
high 10:16 11:5 20:3
28:6 33:32 53:22
84:34 85:16 87:8
92:8 97:3 98:29
higher 12:33 74:16
highest 75:8
highlight 10:8
highlighted 90:33
highlighting 62:34
highlights 42:9 62:14
highly 86:33
him 28:28 33:5 37:12,13
38:12,15,31 39:7,8,10
40:21,25 44:5 46:22
70:12
himself 38:22,29
his 3:4,8,14 17:12,14,15
37:13,15,21 38:12,30
50:26 69:26,27
70:13,15
historic 35:29
history 4:15 100:15
106:34
hive 46:22
hoc 36:23
hold 9:10 26:23 28:28
29:6 35:25 37:24
51:24
holders 39:23
holds 21:33
home 17:14 18:25 27:21
28:28,30 29:16 37:21
39:1 46:5 48:24
51:26 54:32 55:22
61:6 69:22 70:12
74:12 77:10 80:10
82:6 86:12,16 87:24
93:1 101:15 105:12
homeless 29:12 83:17
86:28,33
homelessness 71:32
homes 32:3 58:1 79:27
81:23,30,31 82:1
86:11,12 98:20
100:25 101:15
102:19,20
honour 33:27
honoured 33:4
hook 81:28,32 82:4,8
89:10,20
hooks 82:4
hope 1:7,24 9:13 10:17
19:26 20:12 39:13
48:31 57:12 70:18,20
107:4
hopefully 33:16 48:16
60:1 110:17
hoping 9:15 57:22 70:7
103:26
horrible 71:16,32 73:29
99:5 100:29
horribly 32:25
horrific 62:25
hospital 28:15,16 37:12
75:11,33 79:31
80:5,10,15
hospitalisation 43:14,15
hospitalised 4:31 11:7
hospitality 32:29
hospitals 28:16 36:31
79:23 80:24,25
hostel 37:12
hotel 110:16
hour 28:19 48:22 84:31
97:27 109:29
hours 19:2 85:2,8,11,13
105:21
house 36:23 37:13,15
49:17 52:20 54:24,25
77:1,2,7 90:25
household 54:12
houses 29:10
housing 79:8,9 82:10
86:34 87:1 90:23
94:33
how 1:5 3:24,25 6:21,31
7:30 10:15 11:13
13:4 21:3 22:26
24:5,27 26:17,20
27:19,22 28:9 29:21
30:8 31:7,8,11,23,24
32:12,14 34:4,13,32
35:13,14 37:2 38:17
39:24 40:4
41:1,3,22,23 42:4,5,9
44:2,4,15 46:6,13,33
47:6,13,18,22 48:7,21
49:8 50:11 51:11
52:3 53
however 5:27 6:8 14:6
25:1 27:21 29:25
31:20 46:24 78:10
88:20,26 100:28
huge 1:12 22:2 45:32
58:15 63:5,27,31 65:5
68:15 70:28
human 16:20 17:4,6
18:30 19:24,25 21:1
22:2,3,12,19 29:9
33:12 36:24,29
37:18,19 39:24 44:25
57:34,1 59:6 60:18
61:15,20,30 62:2,4,24
64:16 65:14 68:15
69:7,11 89:6,12
90:11,13 98:30
108:14
hundreds 6:14 92:29
98:21
hurry 17:28
hurt 40:25
husband 42:25,31 43:7
hygienist 39:34
hype 83:3
Hammerberg 61:31
HAROLDSDOTTIR
104:25,28 106:34
Helena 110:5
Hello 1:5 47:9 56:32
Herzegovina 8:25
HILL 70:24,33 79:17,19
82:26,28 83:1,4,27
84:20 87:6,8 88:4,34
89:4 90:1,3 92:10,16
HIV 30:3,6,8 83:12
Hmm 76:34
Holmes 33:7
I
idea 5:23 9:6 14:13 31:15
36:17 40:32 46:27
47:33 60:1 61:11
73:31 75:5 82:28,32
98:20
ideal 40:32
identification 56:5
identified 8:34 15:26
42:7 91:6
identify 43:2 56:9 58:21
identity 27:1,10
ideological 101:8
idiot 5:21
idiots 35:30
ill 1:29
illness 72:13 79:25 81:30
82:7 83:18 87:10,11
89:2
imagine 7:12 28:1 37:1
immediate 2:6 67:15
90:26
immediately 50:28
immensely 70:34
immutable 73:25
impact 3:25,34 23:28
28:4 30:32 100:18
103:26
impairment 10:25
14:27,32 43:10
104:30 106:21 108:4
impairments 102:21
108:1
impediment 37:13
implement 46:3 58:22
66:6
implementation 8:31
31:24 46:23 65:29
67:6
implemented 9:2 31:9
46:25 66:17
implementing 23:24
31:22
implications 27:17 33:22
implies 92:5
imply 52:28,29
import 31:27
importance 9:12 29:15
31:22 32:24 55:13,15
59:25 60:21 62:7
68:25 69:12 77:15
important 1:28 5:9 20:12
22:34 31:14,18,27,29
32:16,18 33:30 35:27
37:34 38:23 39:4
41:5 42:9 43:29
44:18 45:30 48:16
49:1 51:29,30 52:25
53:6 54:24
55:1,7,10,16,23 56:27
57:23 58:11,16
59:11,18,28
61:16,19,21 62:1
64:32 65:6
66:16,21,27,28,30
67:7,19 68:
impose 38:18
imposed 47:27
impression 15:3
impressive 14:1 56:34
104:27
imprisoned 17:11
improve 5:31 90:7 104:5
improved 8:4 73:24
improvement 5:32
improving 10:3
inability 72:25
inaccessibility 27:27
30:12,13
inaccessible 27:33
36:16,31 96:25
inadequate 96:25
inappropriate 54:15
92:4
inaugural 21:34
incapable 3:3 50:9
incapacitate 45:1
incapacitated 44:33 45:5
incapacity 20:1
include 1:33 31:15 32:22
included 8:24 9:3 10:17
53:14 65:16
includes 8:32 58:1
including 13:15 16:13
71:9 85:14 96:25
97:15 102:2
inclusion 8:24 58:31
59:17 62:8 65:33
68:13,15 96:25
inclusive 43:22
income 46:11 108:19,20
incompatible 62:30
incompetent 37:14
incorporated 18:4
incorporates 35:20
incorrect 75:22
increase 31:33 73:16
102:5
increased 6:13
increases 51:16 73:18
increasing 49:23 95:28
102:7
Premier Captioning & Realtime Ltd.
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increasingly 27:9
incredible 20:31
incredibly 17:24 84:20
indeed 56:12 70:23
independence 60:30
64:33 105:23
independent 5:11,26
14:25 18:2 31:23
40:19,20,26,28,32
41:1 42:22 47:29
48:29 51:10 65:20,21
93:22,28
94:3,15,26,27,31,33
98:25 99:27 100:5,6
103:23 104:24,25
105:32,34 106:16,17
108:3 109:14
independently 3:3 27:14
61:1
index 22:13
indicate 86:28,33 87:3,30
indicated 42:25
indicates 70:34
indicating 10:21
indication 86:5
indicator 87:17
indigenous 17:10,11
indirect 90:25
indirectly 90:24
individual 29:1 34:29,30
38:18,29 39:6,17
40:26,27 42:10,13
44:10 49:19,27 55:33
70:16 78:14,22,23,33
79:30,34 103:24
individuals 34:5 41:17
43:33 49:19 61:5,15
72:9,18 74:8 81:34
83:12
induction 39:17
ineffectiveness 5:6,14
inequality 103:3
inflation 79:7
inflexibility 85:29,30
influence 5:25
44:20,22,25 46:24
58:24 69:5 103:13
influenced 40:13
influencing 103:24
influential 17:18 69:17
influx 92:23
inform 46:18 55:14
informal 14:20 26:12,24
35:28 36:15 51:28,31
52:13,15,33 53:20
54:14,15,18 55:1
56:17 100:2
informally 23:30 25:15
information 4:9,10 8:17
21:18 38:26,29 51:4
62:18,21 63:26
informative 10:2 46:7
informed 51:34 77:15
infrastructure 78:6
infrastructures 73:10
inheritance 26:21 30:13
inhibiting 79:2
inhuman 69:27
initial 32:4 58:28 92:23
100:21
initially 22:30
initiate 19:17
initiated 7:6 9:1
initiative 8:23 22:20 57:2
68:22 93:30 95:1
initiatives 28:26
initiator 5:15
inject 28:28 36:26
injustices 20:33
innovation 15:14
innovative 101:6
inpatient 28:23
inquiries 13:13
16:24,25,27
inquiry 16:29,30 17:23
36:24,29
insanity 10:10 24:23
insight 9:26
117
insists 43:8
inspiring 33:28
instance 26:14 42:23
47:32
instances 92:5
instead 18:18 38:24 39:5
42:28 49:7 76:12
80:4 87:25
institutes 2:32
institution 19:34
28:22,23 46:31
63:9,13,14,17,23
64:12 69:22
71:16,19,20
72:10,13,14 73:2
75:10,33 76:7 77:25
78:5 79:8 80:34
81:12 86:17 87:29
88:11 90:32 91:1
92:28 96:17 97:33,34
98:19,22,25 99:5
105:6
institutional 64:24
68:9,12 71:12,24 73:7
75:30 77:3,21 78:19
79:5,15 81:5,7,31
85:20 92:27,31
95:4,13,15,21,22,27,3
2 96:11,15,18,20
98:11,19,34
institutionalisation 1:34
4:29 58:13,18 59:19
62:1,15,28 63:12
64:8,15,23 65:5,19
66:11 67:20 68:16
70:16 71:18 72:10,22
87:15,17,30 89:9
90:18,20 92:4,6,8,26
93:24,30,31,34
94:5,11,17 95:2,7,26
96:17,24 97:1,4,7,31
99:18,24 100:14,24
101:9,19 102:25
institutionalise 8:13
institutionalised 4:15,30
50:21 71:14 89:19
96:28 102:23
institutions 2:11,12
6:19,22,26,27 28:30
36:31 40:19 53:10
58:16 60:8 61:10,13
62:18,23,24,34 63:7
64:11,12,17,28
67:20,27,33
68:1,3,17,23 70:2
71:4,6,15,16,23,26,29
,30 72:2,15,24,25
73:8,29 74:23 77:9
79:8,26 80:32 81:7
86:21,34 87:13 88:6
91:5,7 92:29 9
instruments 14:16,18
insufficient 70:2
integrated 71:29 74:28
75:27 76:32 77:27
81:21 82:1,13,22,24
85:9,20,25,32
86:15,18,21,24 87:4
integration 60:30 71:10
74:17,26 75:16
76:33,34 77:31 80:18
82:5,8,23 83:6,15
intellectual 4:20,22 7:19
8:31 10:4,10,34
14:26,31 18:28 19:16
20:12,14,28 21:2 23:4
26:32 27:3 38:10
72:14 79:24 81:24
82:30 83:34 95:22
100:18 101:20 108:1
intellectually 50:7
intended 71:15 83:33
intending 30:22
intensified 101:8
intensity 57:23
intent 92:13
intention 6:24 7:23
interact 76:23 84:25
NUI Galway Summer School – 19 June 2013
interconnected 1:26
interconnectedness 1:28
60:2
interest 4:9,10 34:15
38:23 41:3 43:17
44:3 56:1 98:8
103:12 104:12
interested 17:7 51:27
68:7 69:4 86:27
106:15
interesting 1:11,15,25
4:28 7:1,17,27,30
8:12 11:32 17:25,26
19:28 24:3,7,22 41:33
47:9 51:28 88:5
93:28 99:23 104:31
107:6
interests 3:4,8 8:1 11:11
15:30 19:10,20,26
20:20 21:20 34:15
37:15 43:22,32
44:9,28 45:7 46:21
50:8 51:8 98:6
intermediaries 24:32
intermediary 24:33 25:2
international 1:7,16,33
2:9 21:2 37:3
39:22,24 55:18 60:18
88:9,13 91:32 102:29
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12:8,17 69:18
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83:28
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36:16,24 37:7 38:7
39:10 40:19 49:4
52:3 60:8
63:7,9,17,33 66:3
71:12,16,32,33 72:10
74:1,14,15,22,28
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103:27
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13:4,30 24:22 26:2
30:3,24,25 33:30
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63:5,6,16,27 65:16
78:14 83:15
88:15,21,22,31 89:4
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35:3,5 39:12 44:16
51:18 52:32 57:17
63:20,25 64:5,31
65:21 67:6 69:31,32
70:6,8,11,19 81:15
82:23 83:5 89:22
91:13 99:18 100:2
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90:4 103:2
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12:3,31 13:17,19
15:5,18,19 16:15,25
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27:19,21 29:4,8 32:25
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104:13,21,23,26
105:32 106:13,17,23
108:13,30
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Ignacio 33:19
Ignoring 37:3
III 33:20
IKEHARA 43:13
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Institute 2:21 70:30,31
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33:3 41:15 49:22
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17:5 21:1,6,22
22:5,17,22 23:15 24:7
25:9,19 26:25
27:2,4,5,22,29
28:4,9,16,30
29:16,28,30 30:9,25
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22:26 35:24 42:14
69:17 89:5
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12:1,7,26,31,34
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85:33 98:10
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14:30 16:9 19:9,12
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43:12,17,18,23 51:14
54:21,22 62:21 67:17
68:27 70:34 73:31
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103:10 105:10 106:21
kindergarten 84:21
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39:12 40:20,26,27
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50:6,9 51:6 52:7,24
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26:2,7,26,29 27:8,29
28:14 32:2 46:4
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KEANE 109:27
KERSLAKE 38:22 42:9
King 33:20
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105:3,28
lack 26:8 28:13 31:3
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71:33 72:26 85:30
91:28 96:9,14 98:1,2
104:8,12,13 108:8
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Premier Captioning & Realtime Ltd.
www.pcr.ie
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3:5,17,20,24,25,30,34
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12:3,7,11,20,25,30
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49:23 51:28,31 67:10
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86:29 95:17
103:13,25,32
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31:17 50:25 65:17
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18:2,3,10 52:12,24
57:22 81:7,27 87:28
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levels 103:27
liability 16:3,4
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licence 24:27
licences 24:28
licensing 81:22
life 3:18,25 4:34
12:12,25,30 18:25
19:14 26:25 30:16,25
34:16 37:34 43:29
44:34 45:1 48:2,7,32
50:26 51:1,30 52:4
58:1 59:6,20,24 60:31
61:19 64:19
65:1,2,11,15 69:31
70:1,13 80:11
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34:3,26 35:10 37:23
38:4,14 40:14,24,32
41:18 42:25 43:8,26
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49:1,21,33 50:9
51:14,21 52:19
54:4,8,12 55:13,21,31
liking 40:21
limit 6:4 82:21
limitation 7:18
NUI Galway Summer School – 19 June 2013
limitations 7:15
limited 7:29 13:29 15:25
27:11,13 28:1,4 83:13
limits 27:24 79:1 90:4
line 17:15 40:7
lines 32:34
link 4:28 9:12 17:24
94:22
linking 66:1
list 4:25 21:28 54:22
68:22 90:34 96:32
97:14
listed 56:16
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lists 87:22
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19:1,18,19,22,25
21:11,15,16,17
72:7,18 99:12
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16:25 17:20 29:21
34:1 37:8 43:24
51:22 58:20 61:18,34
68:6 69:24 70:7,33
71:28 72:7 74:11
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44:5,12 45:21,24
47:15 48:20,25,29
53:30 54:1,14,16
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59:4,6,20,29 60:22
61:1,2,6,9,11,32
64:29 65:7,8,15,30
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72:3 77:25 90:19
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97:13,26,27 98:2,8
108:11,31
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100:32
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66:34 67:2,23,26
70:8,20,25
71:10,19,28 76:10
84:32 90:19 93:22,2
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71:11 74:27 92:11
98:6,7 101:30 102:2
103:1,12 108:6
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98:22
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83:5 84:9 85:33,34
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65:14,16 66:15,32
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58:23 59:3,16 60:2
61:34 62:33 63:4,34
66:22 67:24
68:8,27,28 69:16,17
70:9 71:18,23 72:22
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110:11
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20:28 21:7,18 22:31
23:30 26:8 27:8
28:13 29:19 32:2
36:22 42:14 43:6,24
50:10,11 51:28 53:1
54:18 55:20 57:7,15
62:16 66:24 73:5,7,16
78:16 79:15 80:7
82:33 91:26 95:25
96:28 97:24 98:34
100:1 103:3,8,11,14
104:17 106:30 107:16
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lots 37:28 39:12 41:25
78:1,18 87:17 98:32
99:5
loud 109:3
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96:14
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Lucy's 12:27
Lucy 18:18,19 35:4,13
37:28 38:5
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17:21 18:11,13,20
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48:14,15,18
53:19,23,31 54:31
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102:12
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68:1,3
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38:10 69:22
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92:3
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103:6
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82:6,8 83:6,15
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6:19 9:14 10:24
11:6,23 12:30 13:18
14:13 16:13,32 20:30
31:1,20 35:6 38:11,33
47:5 52:33 55:28
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63:29 64:16 70:33
71:3 72:29 73:29
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96:15,23,32 102:3
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106:31 108:10 109:14
map 110:16
mark 17:2
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marking 101:24
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12:32,33,34 13:1,8
30:18
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30:4,5,21,22 43:9
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massive 2:11 6:26
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masters 22:7 57:1
match 84:29
matter 14:27 20:2,3 44:2
45:24,25 58:10 61:4
98:30 108:23
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61:5,15,18 89:1
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may 5:14 12:26 15:2
24:33
34:13,14,15,16,29,30
35:25 44:11,12 45:11
54:12 66:31 83:5,8
85:24 90:26 92:5
maybe 38:33 39:11
40:24,25 42:11,20
44:3,4 46:2,27,28
47:1,22,27 49:14,23
75:5 90:29 104:31
108:11
meals 85:30
mean 7:23 20:15 30:27
33:27 34:3 42:4 44:9
54:19 57:27 58:10
67:13 94:5,27,31 97:1
102:21
meaningful 64:19
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23:1 28:20 44:32
45:17 55:11 57:18
60:8 77:20
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65:31,32
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88:30
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14:11,32 15:11 39:31
42:34 73:8
medal 22:1
media 50:33 83:3
mediate 48:6
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73:10 81:4
medically 89:2,12
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43:2,8,9,10 47:32
83:19 85:29
meet 15:25 64:13 73:20
94:12 109:32
110:2,3,8
meeting 22:23 33:26,29
74:1 110:1
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member 14:3 32:12
39:16 42:17 43:2
57:2 60:34 67:32
79:9 95:33,34 106:26
107:19
members 8:11 17:22
32:12 39:30 42:7,23
43:17,19,23,26,33
47:23,27 50:25 55:25
60:24 95:3 107:20
memorising 7:20
mental 10:34
13:12,16,19 16:26
23:34 24:32
28:8,13,14,16 31:16
32:18
35:4,14,19,20,23,27
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0 37:11,14 38:4 44:24
57:2,4 68:22 72:13
75:9,34 76:8,27
Premier Captioning & Realtime Ltd.
www.pcr.ie
79:24,34 81:25,30
82:7 83:18 84:1
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104:10
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met 49:17 92:34 104:30
105:9 106:12
microphone 35:8
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might 21:7,31 31:20
38:11,22 39:7,10,15
40:25 42:19 44:9
49:15 58:20,24 61:19
63:23,31 64:4 65:9
66:11,23 70:7,8 74:34
79:12 82:13,23 90:27
93:6
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62:17 95:13
mind 24:12,20 44:18,26
55:15 57:28 66:27
67:33 73:4,31
mine 52:6
minimum 84:29 85:8
86:5
minor 3:5,9
minority 70:4
minute 20:27 25:31
27:20 32:33
minutes 29:21 67:23
93:16
minutiae 52:4
misconceptions 58:20
64:31
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misinterpreted 2:22
mismanages 24:6
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mixed 42:19 100:28
102:20,21 103:1
mobility 28:2
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26:30 44:30 45:14,15
49:33 78:14
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modification 77:32 88:12
modifications 74:34
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49:22 105:16
money 28:6 32:5 46:11
53:3,4 62:33 67:33
68:1 78:8 79:14,15
80:33 86:21 98:7
101:25 102:31
monies 62:34
monitor 99:3,8
monitored 66:17
monitoring 8:8 66:15,18
67:6
monitors 41:26
month 78:27
moot 40:33 94:13
moratorium 97:7
more 4:29 8:9,19 10:14
11:5 13:19 15:31
16:15 17:27 18:21
22:3 23:9,32
119
24:4,7,12 27:14,20
28:1 29:1,20 30:17
31:19 34:1 39:11
40:9,12 43:4 44:12
48:12 49:25 52:22
55:1,8 58:14 59:3
61:18,34 62:19 64:18
66:31 68:17 71:18
72:26 73:22 76:18
77:20,34 78:11,12
morning's 33:4
morning 1:11,24,26 9:31
10:2,13 18:27 32:33
43:1 52:1 63:7 64:3
89:30 96:24 109:25
most 20:12 25:18,19
26:33 27:14 28:20
31:29 32:13 33:18
35:18 36:16 42:14
43:22 45:23 48:16
51:5 56:6 61:6,8
71:28 74:28 75:26
76:32 78:16 81:21
82:22 83:34 84:10
85:20 86:8 92:9
94:9,10 95:23,31
98:30 100:26,34
101:5,32 103:30
105:15 107:26 108:21
109:17
mostly 22:17 24:11
100:18,25
mother's 38:30
mother 20:10,14,33,34
21:5,12,16,17 38:25
mothers 20:29,33
move 10:1 27:22 33:1
37:12 39:13,21 46:10
49:10 58:17,24 63:25
66:10,20 67:1,5,20
68:2,5,17 73:26 82:16
92:21 93:9 97:28
98:21 101:20 105:1
109:32
moved 34:28 48:13
99:8,9 105:11,28
movement 25:11 35:34
40:2 94:15 99:24
106:16 109:10
moves 39:17
movies 85:10
moving 25:6 40:19 45:10
63:29 67:8,11 68:1,9
80:29 84:11 92:22
94:5 97:2
much 1:24 5:10,33 8:18
9:26,29 11:12,25
13:29 16:22 20:32
21:2,3,28,30 22:5
23:15 25:7 26:26,30
28:9,23,34 30:5 31:34
33:26 39:1,27 41:27
43:23 50:23 51:20
52:3 53:7 55:19,20,29
56:11,12,28 57:14
60:3,4 63:22
70:13,22,23 73:18,22
74:2 77:13 78:23
79:34 81
multi 10:4
multidisciplinary 13:31
multiple 2:15 4:24 29:24
30:17
mum 21:6 38:12
municipalities
101:24,26,30
102:7,28,30 104:12
107:3,8,12,13,18
municipality 47:14
103:17 106:2 108:13
museum 74:30
music 110:17
must 7:15 15:30 44:20
65:1 86:1 90:31
104:25
myself 53:18 56:11 65:19
myths 58:20 64:31
Madrid 33:20
NUI Galway Summer School – 19 June 2013
Mahony 1:5
Marie 50:20
Martin 11:31 49:12
94:12
Mary 53:33 54:4
Massachusetts 88:11
Matrimonial 24:22,23
McDonald 21:26,27
McMenamin 33:3,9,25
56:28
Michael's 32:15
Michael 25:11 38:9,22
Ministry 6:25 107:7,19
108:6
MILOVANOVIC
1:12,24 10:17
11:2,6,20 43:28 52:25
Monday 99:28
Mongoloid 5:21
Mount 33:8,9
Mozambique 51:9
MY129 110:9
N
nagging 89:23
name 17:12,13,14 26:22
50:18 98:25 104:15
namely 88:23
national 8:8 9:13 22:19
62:7 64:27 66:3,10,15
68:25,30 98:29
103:13
nations 100:1
natural 47:24 48:2 53:15
73:9 79:13
naturally 47:25
nature 17:23 23:18 65:15
navigating 33:13
near 9:15 52:10 78:26,28
nearby 85:32
nearly 13:21
necessarily 15:3 23:29
necessary 12:15 15:25
19:25 23:12 64:27
necessities 92:1
necessity 50:27
need 7:10 10:26 15:23,25
19:6 23:18,19,29 25:6
27:1,9 28:4,9
31:27,32 32:11,22,23
41:12,25 42:24 45:29
46:16,23 49:9,13
50:33 51:12,16 54:33
58:1,17,34 59:23
60:26 61:5,24,26
62:12 64:5,23,26
65:9,30,32
66:2,10,11,12
67:5,8,20,23,24
68:12,17,22,28,29
69:1
needed 41:5 50:25,26
53:2 72:30 73:15
75:11
needs 6:5 38:26 39:2,5,8
49:19 51:16 52:7
59:13 65:16,29
66:32,33 68:26 72:27
75:27,28 76:5,12
89:26 92:8 98:2,15
99:26
negating 44:13
negative 26:31 27:5
neglect 2:4
neglected 57:3
neglectfulness 56:17
negotiate 54:16 91:21
negotiated 68:27
nephews 52:19
networks 61:7
neuro 5:25
neutral 34:27 78:10
never 4:33 5:5,21 7:16
8:2 11:10 19:21
25:17 49:18 53:11
64:12 77:4,9 84:7
99:13 100:29 103:3
104:5 105:6,16
new 13:16 16:22,28
17:12 34:20 35:6
41:34 48:7,8
49:4,18,23 60:17
78:34 88:15 96:6
97:7 98:18 106:23
109:4
news 32:26 102:34
103:21
next 10:1 11:28 18:1
21:33 47:8 56:26
62:32 63:4 65:4
68:21 70:24 74:20
78:29 79:25 84:13
95:23
nice 1:7,25 62:3
nieces 52:19
night 61:6 93:1 109:23
nine 40:10 104:29
nitty 37:5
nobody 7:11 20:34 48:30
76:7
non 2:16,18 7:7 37:18
59:33 63:32 67:25
72:33 76:19 79:13
83:8,28 85:11 88:27
91:12 106:30
nonetheless 2:8 7:10
80:34
nonverbal 77:16
nor 98:4
normal 3:3 51:1 98:5
108:32
normalisation 100:16,20
101:3,8 103:10
normalise 100:22
normalised 100:23
normally 21:8 48:3
not 1:16 2:10,15 3:20,21
4:6,15,21 5:8,22,28
7:1,29,30 10:5 11:14
12:24,26 13:8,17,19
14:12,27
15:3,5,21,22,31,34
16:1,15,25
17:11,13,15 18:8,19
19:20,30
20:34,11,12,30 21:6,8
22:17
24:6,19,20,21,26,28
25:1,4,7,9,14,24,25,3
3 26:3,7,22,24,25,32
27:2,5,14,2
note 24:31 76:33 95:9
notebook 110:11,12
nothing 12:24 17:20 24:6
44:25 63:17 66:29
69:24 77:28 79:22
90:31 106:2 107:32
108:10
notice 2:2 38:20 44:29
noticed 40:15 56:16
73:8,14
notwithstanding 92:7
now 5:10 8:12 9:33 13:21
16:20 17:3 19:1,6
21:28 23:13 25:15
28:1,14,27 29:9
30:5,12 32:33 35:3
36:24 40:2 42:14
43:26 44:14,22
51:20,21 54:11 55:24
57:14 63:4 72:1
73:8,11 74:19,22
75:18 76:33 77:23
81:13,20 83:2 84:28
85:7 86:11,15 87:9,13
88:19 91:28 9
nowhere 84:25
number 1:10 6:12 13:12
16:17,24,27,30
36:8,12 38:8 49:21,23
54:24 58:15 62:20,23
63:23 65:7 68:5 69:6
89:21 93:20,24,29
95:3,13,26,29 102:26
numbers 73:28 102:15
nursing 81:23 82:6,12
87:24 93:1
nurture 20:2
Naughton 94:12
Netherlands 95:15
Network 8:24,29 51:9
93:22,28 94:2
NGO 1:13 20:5
NGOs 11:29 16:31 22:3
32:15
Nicholson 41:15
Nordic 99:27,32,34
100:10,14,17,20,26,2
8 101:5 102:1 103:8
104:2 106:30 109:9
North 81:28,34
Norway 20:9 47:19,20
49:33 99:34 100:11
101:5,10,13 102:14
Norwegian 102:15 104:9
NUI 1:5
NUIG 1:1
Nyeov 11:31
O
o'clock 51:21 110:8
objected 5:5
objective 56:10
objectives 56:10 62:6
obligation 39:4 64:24
75:26 90:12,15,26
obligations 14:7 57:8
90:27
obliged 90:19
observation 45:33
obstacles 93:23
obvious 5:7,20
obviously 55:2 59:25
60:11 90:23 104:28
105:17,22,28 108:30
occasions 27:31
occupy 33:8
occur 88:16
occurred 19:26 26:7
odds 12:8
off 11:28 20:30 29:12
35:3 45:34 56:17
68:30 76:10 77:22
109:23 110:17
offence 24:33
offensive 5:21,23
offer 75:14 105:24 106:2
offered 22:1 83:24
103:21
offers 106:26,27
office 16:18 41:15 49:24
65:23 108:27
official 31:20
officials 8:11
often 5:27 6:9 8:10 15:34
20:33 29:26 39:18
43:17 48:20 52:25
54:30 60:16
63:14,16,22 64:3
66:21 70:2 82:33
107:32,34
okay 7:9 11:34 21:25
29:23 35:13 37:6
40:21 45:13,15,21
47:24,27 51:23 52:15
54:12 65:6 67:7
71:30 78:11 87:3
90:29 92:19 97:27
109:23,24
old 18:28 27:22 34:15,20
35:6 49:4 50:21 56:9
104:18,29
older 3:9 102:21
once 12:21 33:7 46:25
one's 11:14 94:28
one 1:11 2:15,21,32 6:13
7:9 8:4,32 9:34
10:6,33 11:30 12:6
13:7,27 16:1,22
17:9,34 19:29
20:10,27 21:15
23:3,5,14,31 24:20
25:10,16 26:32
27:4,5,11,17,18,24
28:14,15,21,22,33
31:2,13,29 32:2,6
33:9,18,19
34:4,12,18,19,20,21,3
4 37:17 38:9,17,34
42:23 43:7
ones 3:18 18:13 79:7
83:28
ongoing 31:15 88:20,23
89:16 109:12
only 2:15 3:12,13 4:21
7:3,4 10:5 12:15
13:27 16:7 17:1
22:30 25:19 28:21,22
39:28 56:4 63:1
65:19 68:16 72:6
79:7,30 80:9 82:10,11
83:18 86:6,11 87:28
89:20 92:8 93:9,10
95:16,20 97:31
100:10 106:8
108:18,19 109:29
onto 10:1
open 19:12 20:8 22:19
25:32 26:7,22 30:29
32:34 46:16 57:2,7
68:21 72:9 74:20,21
98:18 105:3,27
opened 16:12 36:29 70:8
100:10
opens 37:7 102:27
operate 37:2 80:32
81:20,22
operated 35:4 79:23
81:17,18,19
operates 39:17
operating 80:34
operation 55:18 107:27
operative 39:25
opinion 43:14 54:29 70:4
opportunities 30:17
60:24
opportunity 36:20,26
40:2,12 59:23 61:11
63:20,26 88:2,33
110:6
oppose 76:33
opposed 55:34 56:1
89:10
opposite 92:5
oppositions 47:27
oppressed 42:12
optimal 38:31
optimism 101:30,34
optimist 70:7,18
optimistic 13:17
option 3:7 29:12 36:34
82:1 83:9 86:16
optional 12:4
options 2:33 30:30 32:8
45:25 50:12 77:10,16
83:13 85:25 93:3
94:33 103:23
order 6:25 13:29
15:17,22,25,29
16:1,5,9 35:21 50:26
54:23 58:34 61:26
64:27 72:31 76:7
81:28 87:14
ordered 20:5
orders 15:10,26,34 18:33
19:9 24:16 34:24
49:25
ordinary 60:26 105:10
organic 52:7
organisation 8:26 23:5
94:9,18 106:30
organisations 7:16
8:17,24 9:3,18 23:3
25:11 26:10 32:22
40:20 42:24 55:7
63:32 103:25 107:20
108:2,27
organised 64:20
original 84:12
originated 100:17
other 3:9 4:10 7:11,16
8:4 9:27,29
Premier Captioning & Realtime Ltd.
www.pcr.ie
10:12,18,34 11:11
13:17,18 14:8,26,32
16:15 19:3 20:22
22:26 23:28 24:12
26:8 27:28
28:16,20,25
29:6,20,24 30:16,33
31:4 32:15 33:18
34:18 35:24 36:20
37:30 38:18
39:12,15,29 40:25
42:19,34 43:8,26
44:14 45:29 46:3
47:2,
others 7:21 9:7 12:12,27
25:34 27:24,25 52:8
53:15 58:29 59:4,8,20
61:21 65:32 66:32
67:31 76:26 91:23
92:29 93:29,31 97:16
105:31 108:11
otherwise 9:33 46:29
72:33 86:17 109:2
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9:2,11,18,22,28 11:28
12:20 14:7 15:30
16:13 19:7
21:6,7,33,34 23:12,16
25:10,25 26:15 27:25
29:17,34 30:7 32:19
33:8 34:8 36:29 37:8
39:30 42:22,23 43:3
45:13,15,21 47:19
49:25,27 51:17
52:26,29 53:22 54:8
55:24 56:32 59:5,6
ourselves 100:1 104:28
out 3:15,17 4:31 7:14
10:9,33 15:14
16:28,32 17:15
22:13,33 23:3,8 27:22
28:25 29:25
30:5,7,19,31 32:9
33:15 36:10 37:19,28
38:7 40:7,10,12 44:28
48:13,14,21 49:17
52:1 54:33 55:21,23
57:16,18,24 58:34
61:28 62:6,15 64:27
66:3 67:26 68:8,12,25
71:14,30 72
outcome 19:13 21:17
outdated 5:30
outlaw 88:21
outrageously 78:11
outreach 77:16
outside 23:31 30:17
32:11 40:31 71:31
77:6 86:3 96:18
109:32 110:3
over 3:32 12:20 14:6
21:31 22:7 25:33
32:25 33:25 36:13
38:20 40:21,27
41:12,16 49:15 57:10
62:17 65:22 71:23
79:8,12 85:31
86:25,27,33
89:12,13,33 90:5
92:5,24 94:28 95:21
96:11 97:13 98:11
104:20 105:12 108:29
overcome 92:23
overlap 91:31
overprotective 40:31
overseas 54:31
overview 99:32
overwhelmingly 20:29
own 3:4,8,14 6:6 7:20
9:28 11:11 14:17
26:3,4 29:9 38:30
41:10 45:1,25 46:8,18
48:29 53:12,16,22
54:9,19 58:1 61:26
80:8,19 81:20 82:1
90:25 94:28
101:15,16
120
owner 54:5
O'Mahony 109:29
Offences 17:10 24:31
Oliver 33:7
Olmstead 75:8 78:22
79:21 81:17 82:17,31
91:33 92:26
Olympics 83:4
Olympus 33:8,9
Outcomes 62:16
P
paid 10:20 77:2,6,34
79:6 84:28,29,31 85:3
pain 38:11,14,25 39:8
panacea 11:16
panel 33:18 35:10 40:16
43:26 50:17 51:21,24
52:21,24 55:25
56:12,28
panoply 74:20,21
paper 12:27 22:24,25
23:25 25:28
paradigm 34:21 35:7
44:23
paragraph 90:19
parallel 54:7 98:15,17
paralysed 43:11
parameters 4:12 52:27
parent 18:29 19:9,31
20:2,17,21,31 21:8,12
24:33 32:5 40:29
46:21 47:2 48:17
53:32 54:6 74:19
80:14 92:31 97:33
98:4,7 105:28
parental 2:21,22,25,33
3:19
parenting 18:29,30,33
19:4,21,30
parents 8:17 18:33 19:31
20:28,30,34 21:2,7
27:4,21 40:18,31
43:15 45:4,5,6
47:4,12 48:13 53:31
54:1 74:16,22 80:15
89:31 96:17 105:2,7
106:21
park 83:5
parliamentarians 107:27
parliamentary 16:29
part 2:15 7:11 9:8 17:20
23:15 25:18,19 26:33
27:14,25 28:16,31
32:13 43:7 49:27
57:4 58:2 59:5 61:21
65:10 66:8 70:12
74:15 76:17,24,26
90:22 93:12 94:15
96:14 107:16 108:5
partial 3:7 4:4,5 5:9 6:5
7:2,4 23:34
partially 3:24
participants 25:16 26:13
30:28
participate 13:32 33:30
35:8,9,11 57:24
58:1,25 59:6,20,29
60:22 61:9 64:29,34
68:19 74:3 82:1
83:7,8
participated 92:34
participating 39:30
75:23,24 107:17
participation 58:31
59:17 60:31 64:19,21
65:33 67:29 103:24
107:24
particular 12:21 13:10
15:4,31 18:24 19:28
21:27 34:9 38:34
66:29 72:31 74:26
90:19 91:14 95:2
particularly 13:17 16:31
18:18 20:29 21:5
22:8 31:25 32:6 35:5
51:25,31 55:8 59:11
67:18 80:14 82:12
NUI Galway Summer School – 19 June 2013
90:8 92:24 101:10
109:21
parties 20:22 31:7 58:28
59:13 107:27
partly 17:20 38:4 70:4
partner 1:20 18:33 56:34
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Premier Captioning & Realtime Ltd.
www.pcr.ie
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121
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QUINN 25:31 32:33
51:24 56:13 91:28
R
race 75:19
radical 36:24 45:11
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70:6 82:23 99:13
NUI Galway Summer School – 19 June 2013
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70:15
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68:34
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58:31,32
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Premier Captioning & Realtime Ltd.
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4:23 7:4,30,33
11:17,21,23 12:7 14:1
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47:17 50:33 52:7
57:32 58:8 62:17
64:6,12,24 65:15,26
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35:23 39:15,21 42:23
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102:9 103:28
seewritenow 1:3
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NUI Galway Summer School – 19 June 2013
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82:17,24,30 83:13,14
84:23 85:19,24,27,29
87:4,5,7 90:34
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70:11 75:19 76:12
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37:33 38:17 39:6
41:12,18 42:26,29,34
NUI Galway Summer School – 19 June 2013
44:5,22 45:25
49:9,10,19 52:34
53:2,4,5 55:8 58:1
59:28,31 60:12,26
61:24,26 63:13
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42:11
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