Workshop 1: Independent Living as a Human Right
Implementing the UN Convention
Chair: Horst Frehe
Rapporteur: Tabitha Collingbourne
The focus of the workshop was to look at issues in regards to the implementation
of the UN Convention on the Rights of Persons with Disabilities (CRPD) on a
European and national level. Through an open debate the participants discussed
issues and experiences in regards to independent living in their respective
countries, and how to best push forward an implementation.
Frehe’s key points were for countries in the EU to ratify the convention and for
the convention to be made into a directive, and for this directive to be transferred
into national law. A UN convention is not enough. Unless a law is passed,
fundamental rights and freedoms, have no legal protection. Making the directive
legislation, opens the possibility of legal action if rights are breached. If the
directive is made European law, an individual may sue directly in the European
Court of Law. The European Court of Law may impose a fine on a country if the
directive is not transferred into national law within the given deadlines.
The convention focuses on an e.g. an individual’s right to self-determined living,
full inclusion and participation in society, an accessible environment and equal
opportunities. By ratifying the convention, countries commit themselves to make
changes in their societies to facilitate the full participation of disabled people.
Frehe encouraged the participants to work nationally, however pointed out how
countries might need the pressure of the EU. Also, as European law, all citizens
within the EC would have the same rights.
After Frehe’s opening, there was an open debate where concerns and
experiences in regards to independent living and the implementation were
discussed.
A representative from the Bulgarian delegate questioned who monitors the
implementation, arguing that laws may be weak and unless there is somebody to
monitor, the law may not be very effective. She argued that there is a lack of
awareness of what one’s rights are, hence a lack of awareness of what to fight
for and an awareness that disabled people’s rights are human rights.
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A Latvian delegate raised concerns of the translation of the convention,
requesting a need for quality control to make sure that a directive will have the
same meaning in all languages. An example used was how personal assistance
had been translated as personal support.
One delegate suggested that key words and terms have an explanation, which
would set one European standard.
Rapporteur, Tabitha Collingbourne, gave a brief introduction to and summary of
the situation in the UK, which in June ratified the convention with four
reservations, as well as the optional protocol. In the 90’s the UK introduced
Direct Payment and independent living became government policy,
acknowledging that disabled people should have equal opportunity to take part
and be included in society.
Buzzwords at the moment are personalisation: shifting the control from the state,
empowering the individual and individual budgets.
Collinbourne pointed to the Equality and Human Rights Commission as one of
the monitoring bodies.
She considered there to be three main barriers for an implementation:
- Cultural, e.g. many people today depend on institutions
- Under funding of social services
- The law being outdated and complicated
She said the fundamental difficulty is making the transformation from welfare
entitlements to social and economic rights, for which there is no legal protection.
Human rights belong to people, entitlements can be given and taken away.
The workshop and debate shed light on the how different the situation and
progression of independent living has come in the various countries. It
highlighted the advantages of meeting in such a forum to discuss and find a
common strategy in transforming the ideas of independent living into demands
and legislation.
H: Horst
T: Tabitha
Q: question
A: answer/comment
Horst introduction:
Will talk about the Convention, paper from Raffaello, EU Directive, national
experiences
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Paper by Raffaello Belli read out (shortened version)
H: how should we discuss it? We need to make binding law, not all countries
can go to court.
Raffello: In Italy, forbidden by law to break Convention, so could go to
Constitutional Court
Q: what is Optional Protocol? What does it do?
T: Optional Protocol allows individuals or groups to make complaint to UN
monitoring Committee on Rights of Persons with Disabilities if their
Convention rights violated. But only if their country has ratified Optional
Protocol.
Q: What should I ask MEP for?
H: ask for European Directive. Then if your country does not do it, EC can
enforce. Also individual can go directly to European Court of Justice.
Q: Procedure for making a Directive?
H: Under Article 13 EC: Commission proposes, Parliament debates/decides,
back to Commission. Council has to decide it, then all member states must
accept. Must be unanimous vote. Germany is against a new Directive
Q: National countries ratify anyway, why need for EU Directive?
H: e.g. Germany: has no discrimination law, just one Act, very weak. would
not get it without EU Directive.
Experiences from Eastern Europe?
A: Bulgaria. International law enforcement is not strong enough. Bulgaria
signed not ratified UN Convention. But e.g. Convention on Rights of the Child
ratified 1991, but rights of children still violated. So not sure to work for
disabled people. No pressure on governments to do what they should do.
Little awareness of rights, that we can fight for rights. Trying to promote
CRPD, but not optimistic.
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A: Luxembourg. No movement until now, CRPD signed only, but already big
empowerment. Working for a Directive. EU legislation very well known, so
can argue CRPD and Directive.
A: Latvia. Similar to Bulgaria. Personal assistance/personal support two
different things. Signed Convention with bad translation
H: Two directions to CRPD:
1. disabled people’s agenda
2. governments under pressure: things they can’t fulfil
e.g. German translation: ‘inclusion’ vs ‘integration’. New law about education
now uses ‘inclusion’ (i.e. not special schools) in Bremen. CRPD helped.
Special schools should close over next 10 years (H sceptical re timescale).
Similar law being discussed in other German states.
Q: Who will take responsibility? There isn’t any money because of economic
situation. Maybe translation into different languages can be made at
European level, and describe what we want included. Then can help others
who are having difficulty.
H: would help to get CRPD into correct languages. EU Directives are
sometimes mis-translated, so would need to be done well.
A: UN Convention is in 5 official languages
H: In Germany there’s a ‘shadow’ translation by German Council of Disabled
People
Q: Which is more important? European Strategy, Action Plan, or what?
H: I’m lawyer, so prefer a Directive. Then can go to ECJ. Directive has to be
implemented within timescale, or get a fine. If Directive is very direct,
individual can go straight to ECJ.
T: short presentation on UK (précis of paper)
Q: Czechoslovakia will ratify soon. Please summarise our discussion with
MEPs.
H: Main argument is that we need binding law. Need cultural change, need
funding, need Directive to make that happen.
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Intergroup just now discussing Directive so should put UN Convention into the
Directive.
Q: Should we use ‘cost-effective’ argument?
H: not so sure. For some people needing very high cost, may be higher than
institution cost. But it is a human right. Cost-effectiveness should not cancel
out human rights.
Do we agree with paper handed out (Horst’s paper on need for and content of
Directive)? H reads out content suggested in paper.
Feedback? Agree/disagree? Additional ideas?
A: Status of Personal Assistant job should be emphasised: it’s a good job,
high status, good for economy, not servant
A: need legal protection for families of disabled people, not means-tested, but
as human right.
Workshop 2: Title Independent Living with Personal Assistance
Chair Adolf Ratzka
Participants JAG Åsa Hag and Kerstin Sellin
Rapporteur: Debbie Jolly
The workshop began with a short presentation by JAG
Members of JAG began with introductions, introducing themselves and one of
the 400 members of JAG who uses the services of the Cooperative. JAG means
‘I’ in Swedish short for equality. JAG was formed in 1992. Cooperative works with
disabled people with multiple impairments of which one must be an intellectual
impairment. Of the 50,000 users of personal assistance (P.A) in Sweden 40%
have intellectual impairments. JAG works for self-determination and choice. The
average hours of members P.A. is 120 hours through 24 hours a day. Pele (?)
has a legal guardian who helps with and discusses work and play and decisions.
Pele ( ?) has a service mentor , who has remained the same for 13 years. Legal
guardians and service mentors can be anyone who knows how you want to live.
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Work with user to make sure that they always have assistance even if a P.A. is
sick. Conclude by saying that Personal assistance has been a revolution for
disabled people.
Workshop
Adolf began by introducing himself as the founder of the Independent Living
Institute in Sweden.
Noted there that been criticisms of Independent Living (I.L) including that it was
only for the elite, for people who could speak for themselves. There was a range
of opinions, but Independent Living demanded the same degree of selfdetermination that others take for granted.
Two simple ways to fulfil this
1. Personal assistance where the disabled person chooses who will be an
assistant, what they will do, when they will do it, and the ways in which
they will carry out their tasks
2. Personal assistance through buying in services from a service providerthe so called employment model.
The I.L concept is not just about gaining personal assistance, but who in
charge the disabled person or a service provider.
But the quality and qualilitative responses to Independent living aims through
personal assistance vary in
1.Different countries with different policies
2.Through different service providers
3.Through the individual user
Want to open up discussion on the first of these three levels of independent
living:
1. National levels
That is, there are different issues in respective countries through policies,
payments, governments, is it means tested?, is it needs assessed?, can
people take on the financial responsibility?
Slovenia
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We have 95 users, in a small country, but this is a national problem. There is
a big abuse of the terms P.A. Many institutions abuse the term independent
living. There is a lack of understanding of what Independent living as set by
disabled people means with institutions saying they are offering independent
living, which they are not.
Terminology – how do we stop the abuse?
Serbia
The P.A service is not in the welfare system- have tried to push equality
standards, have tried to set the definition, have spoken with the ministry for
social affairs. Now we insist that accreditation and licenses must be put on to
the service providers.
Set of standards and definitions made and having them accepted by the
government one solution
Adolf said that disabled people in Sweden tried to set up standards but it
didn’t work- there is no patent for personal assistance or independent lving.
Law since 1994 that personal assistance is provided, now its considered too
expensive for governments in Sweden. The government want to save money.
For example by cutting what are considered as needs- restrictions are now
being imposed.
We should not exclusively refer to the employers model- just a small
percentage take the employers role, most use services
Flanders
We have 700 budget holders. The personal assistants are not chosen by the
people who will use them. Due to legalisation in Flanders it is the employer
who takes the responsibility.
Sweden
How do you get a choice of P.A.s?
Adolf: Cooperative as an employer of assistants, although this is being
threatened with the health and safty issues on employers of P.A.s
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Swedish government representative says: there is a misunderstanding and
that in his view there is no cutting of services, but this is a debate- asks if
anyone has ever thought of trade making the term ‘Independent Living’
Considered too broad to have it trademarked, however we should follow the
lead of Serbia and set up guidelines to get the concept protected.
Adolf suggests : ENIL could commission people to set official
guidelines for Independent Living and its proper meaning according to
disabled people, could pass on to all parties at national government
level, at European level and at International level.
Ireland
Need to work out how we share information, should make it that regardless of
the financial situation P.A. is guaranteed, budgets should be enshrined by
legislation.
Greece: How do we take the first steps towards P.A? Join ENIL? Approach
other countries?
Israel
Our Social affairs have 3 levels of P.A. according to the level of
impairment/disability
We can hire only foreign workers, problem in that government takes into
account costs, and foreign workers are seen as those who can receive low
wages/ low earnings
Germany
How do we form our own interest group?
How do we form our own strategies?
How do we join together?
A big lobby is needed
Non-disabled people still think in terms of institutions and charities
What lobby do we have?
Adolf argues: charities do not represent us. ‘They represent us as little as the
butcher represents sausages’
Slovenia
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Can ENIL produce a draft for personal assistance a coalition base to protest
for I.L?
All reminded that ENIL is only as strong as its members
2. Market based service Provision and service providers
Adolf asks
Who works on P.A legislation? On what P.A.s are allowed to do? How do we
deal with service providers, why do some think that markets are only open to
charities, and who has fights with trade unions?
Spain
Parliament decree a year ago determines who can provide assistancepeople mainly living with families with family care.
Service providers try to protect their markets
Safety issues being imposed make getting P.A more difficult, yet in places
where there is no money for P.A neither the nurses or trade unions worry
about our safety.
Germany
Trade unions do not take us into account but just the men and women who
provide P.A. Service providers should be made to work closely with the
principles of I.L.
IN Sweden the trade unions began as enemies in Sweden, they turned the
clock back 100 years, they said we exploited assistants Now unions are
invaluable allies.
England
Trade unions not a problem but local authorities say who we can employ as
P.A.s they do not want us to employ those who they see as not properly
qualified, training and qualifications are being used as a barrier.
What can we do? ENIL could put together a set of guidelines including
skills, training and qualifications for P.A.s
3. Individual level
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How do we influence the quality of services? How to we set standards for
employing/using P.As? How do we learn to be the boss?
How do we see the self as a person? How do we identify our needs? How do
we organise relationships with P.As?
Should we have peer support at the local level? Should we start training for
those that need P.A.s Should we become trainers? Should ENIL develop
materials?
No responses
We are too used to seeing ourselves in the role of victim, easy to criticise
governments, call for lobbying, criticise legislation- but we forget ourselves
and what we need.
In Sweden we have peer support- can you deal with all the problems that
come up with unions, with P.A.s? It is a big step to speak for ourselves, to
take the freedom, to take the responsibility, to develop empowerment among
ourselves.
Do we need a peer support program from ENIL?
There is too much emphasis on training P.As not enough emphasis on
leaders who are making the biggest steps of their lives. Disabled people are
seen as objects need to move emphasis from P.A to the need to train
ourselves, but it is difficult- we need to be managers of our own lives.
Workshop 3 The Right to Live Independently in the Community”
Chair: John Evans (ENIL/ECCL),
Birgitta Tullberg and Cecilia Blanck (JAG)
Rapporteur: Ines Bulić
Participants from Sweden, UK, Croatia, Bulgaria, Norway, Austria, Ireland,
Slovenia, Italy
John Evans introduces the topic
JAG
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No reason for pwd to live in group homes – everyone has the right to live
in the community
JAG’s work – pwd live with their own assistants
Support provided for managing and supervising the assistants
No need for expensive group homes – only stronger support needed
No one needs to live in an institution
[Slideshow with people living in the community w/ intellectual disabilities
and other impairments]
Ines Bulic presentation – see PowerPoint
Questions to JAG –
- What is the role of the service guarantor?
- Answer: to supervise the work of the PA (admin support – how to organise
the PA etc)
Discussion
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Slovenia – no reflection of ratification of CRPD in reality
Group homes – called centres for IL
Nurses/carers – called Pas
1st thing to be discussed after ratification – what is IL?
Also translation problems – problems of interpretation of A.19
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One of the problems is that there is no deadline for implementation of
CRPD – suggestion to set up a date for implementation
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In Croatia, pwd with have no right to PA – only physically impaired and
only for 4 hours per day
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Q: How to secure PA for people with intellectual disabilities?
One of the ways is by using self-advocacy
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Example of Italy – there are laws, but no implementation
Resistance coming from public administration and social services
They decide for disabled people, without talking to them
Another problem is that a lot of pwd don’t ask for their rights
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Germany – translation of CRPD done without pwd
They use their shadow translation
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Using the CRPD to get nation-wide PA
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Ireland – 2 issues
Parents being paid as carers – seen as PA
New institutions called nursing homes – people under 65 end up there
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Q: when will the reporting start on the CRPD and how can one
participate?
First reports in 2010, need to write shadow reports
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