Avril Webster Page 1 of 13
Why families want change?
Good morning everyone thank you to the Federation and in
particular Maria Walls for the invitation to speak to you here
today. My name is Avril Webster I am a parent and I am going
to talk to you about why I believe we need a radical change in
how we deliver services to people with disabilities and their
families.
Next slide – structure of presentation
I am going to start by sharing my story with you, then talk
about why it time to change, why we need to change the
relationship between people with disabilities and their families
with service providers, HSE and government
And finish with some thoughts around the need to make
change within our communities.
I have some hard things to say today but I want you to know
that I that I am absolutely not here to be negative, I know how
hard staff work – for change to take place we all need to work
together, listening and discussing how we will implement
change and then actually doing it, and at all times keeping the
person with a disability and their families right in the centre of
involvement.
Next slide family photo
I married to Robert and I am Mum to three wonderful children,
here is a photo from a few years ago. Stephen is now 15
Michael is 12 and Rachel is 10.
Avril Webster Page 2 of 13
Next slide Lahinch
Here they are on Lahinch beach Co Clare a couple of weeks ago.
We live in Annacotty just outside Limerick city we are big
Munster rugby supporters! Just to let you the rugby player Paul
O’Connell also lives in our village Annacotty.
Today I am going to talk particularly about our son Stephen.
Stephen is our eldest – He is now 15 into computers, music and
dvds, he loves the outdoors, he is a great swimmer and a funloving teenager.
Stephen also has a very rare chromosomal disorder and is at
the severe end of autism and intellectual disability and so he
has complex needs.
He was a premature baby and at three months old, the doctors
came to tell us that they believed Stephen was brain damaged
and in that moment our lives changed forever. We landed into
the world of special needs and disability starting in that medical
place called hospital where we spent many weeks during his
early years. We got excellent medical treatment and help, but
the message from the doctors from those early months was
one of limitations and that we were not to expect too much.
Fast forward 15 years and here he is
Next slide Stephen
He had very few words up to age 12, but we are now seeing
more language coming so maybe there are some advantages to
all those teenage hormones!
Next slide Stephen with Rachel
Avril Webster Page 3 of 13
Next slide Stephen with Michael
As I said Stephen is now 15 so I am 15 years in the world of
disability and it is a big part of my life.
Next slide – Off We Go
As well as being Mum to Stephen, Michael and Rachel, I have
created the Off We Go! series of books and apps specifically to
help children with special needs.
Next slide – my background
I am involved locally in Limerick with parents and friends group
for many years. I am a parent rep for Ireland for Unique the UK
based support organisation for rare chromosomal disorders. I
do guest lectures at the University of Limerick and have spoken
at various conferences both here and in the UK. I also sit on the
board of Inclusion Ireland.
The reason I am saying this is not just to show you that I am a
busy bee but that so I am here today and this week with my
voice. And that my voice has is strongly influenced by the many
cups of tea I have with other mums, dads, siblings and people
with disabilities.
So why do we need to change how we deliver services to
people with disabilities and their families?
Next slide Time to move on
Avril Webster Page 4 of 13
Because first and foremost it is time to do so and I believe we
can do a much better job.
Time
When I say time, I want you to think back - what was life like
20-30 years ago in Ireland?
Next slide google and gadgets
Most of us did not have mobile phones, the internet which we
now cannot live without was just starting. Life as we know it
has changed dramatically in 20 years.
But looking at the disability sector, from my perspective, on the
family side, the delivery of services in Ireland has changed very
little in 20-30 years, so from a family perspective it is well time
for us to change and move on.
If any of you have had the privilege of hearing Caroline
Tomlinson a parent from the UK talking about this subject, you
will know I am borrowing one of her examples –
Next slide holidays
20 years ago in order to book a holiday many of us sat with
travel agents as they told us what was available, where as now
most of us plan and individualise our own breaks away. The
kind of holiday that you might want will be totally different
from the holiday I would like. Surely planning and supporting
someone’s life is far more important than a weekend away or
two week holiday in the year.
The parallel is true for people with disabilities and their
families, the kind of service Stephen and our family needs is not
Avril Webster Page 5 of 13
the same as the next family, so therefore the service delivered
needs to be personalised to our needs and we would like a say
in that.
I am Stephen’s Mum and I am asking today, please may I have
the opportunity to help plan Stephen’s life in the same way I
will help Michael and Rachel?
For this to happen we need to change the relationship with
service providers, HSE and how we receive state support.
Next slide relationship
Relationship with service providers, agencies,
HSE/State
At the moment our relationship is not equal. There is a culture
of ‘gratefulness’ that families feel grateful for whatever services
they get even, if those services are not suitable.
The service providers are in a monopoly situation where for us
as a family we are allocated our service based on where we
live. If we are not happy with our service, we have no choice it
is that or nothing.
Many of are so worn out, stuck and feel so vulnerable that we
cannot voice our concerns. It is not a level playing field.
Next slide seesaw
Outcomes are not measured by feedback from families and
people with disabilities.
As we know there are lots of the changes in the disability sector
with lots of new reports and new things happening. Yet in many
situations we the families are being left out of the
Avril Webster Page 6 of 13
conversation. We have not been consulted in a real way. Our
voices and contribution are not valued in a real way.
Communication and information
The first thing we need to right the balance is information and
good communication.
Next slide information
When are families going to be informed about new government
policies that affect services they receive?
You may say that there are reports and strategy documents on
websites for us to read. That is not enough - because we are
carers, we do not the time to read huge reports and cannot get
to information events. It is not enough to tick a box and say
families were informed, it is not meaningful.
We need regular understandable communication and I mean
not 100 page reports, we need accessible information to be
given locally and nationally in a variety of different ways from
service providers, HSE and government. We also need regular
face to face meetings at every level.
For example I was at an excellent event last month run by the
Federation and the National Group for Progressing Disability
Services for Children and Young People. Professor Roy
McConkey was the key note speaker and it was about the
importance of family centred practice. 155 staff attended and
only 11 parents attended at an event about the importance of
family. These kinds of events are being run for staff, when will
there be information sessions for families? I hear you saying
families are always invited to seminars and conferences. But in
Avril Webster Page 7 of 13
real life, it is very difficult for family members to attend without
support.
Support
Next slide support
Which brings me to my next point.
We need to look at respite or family support and all sorts of
different ways to allow people with disabilities and their
families to get to information events.
Why are families and self advocates and advocacy groups not
being be funded to run week long events like this one?
For our voice to be heard in a real way, we need support. That
support will be different for each person and each family. And
that support should not just be focussed on day services,
residential and therapy services. We need a wide range of
personalised supports.
Some of the most important support and information I have
got over the years has been from other parents. We need to
help and support the setting up of strong family networks
across the country. Sharing a cup of tea with others in the same
boat as yourself is an invaluable resource that needs to be
nurtured.
Next slide - choice
Choice
Avril Webster Page 8 of 13
The next thing I believe we need to right the balance is choice.
The idea of choice and moving to an individualised support
system is not just about those people over there with
disabilities and their families, it is actually about all of us. It may
not apply to you today but you don’t know the day that it will.
If we are lucky enough to grow old, some of us certainly will
need support for things like dementia. What will that be like?
Ultimately the measurement of quality service is: Is this what I
would like for myself, or for my son or for my Dad?
What I am saying is in our change, in the rebalancing of our
system, instead of trying to fit Stephen and us into the existing
rigid system, we need to look at how best to support Stephen
and our family, to a relationship where we are a like a customer
receiving a service.
For example, our family receives 3 nights residential respite per
month. Three nights in a respite house with other children with
disabilities is what is available to our family and we have no
choice in how that service is delivered. Respite is a life line for
us and many families so that we can sleep and do some things
with our other kids. We often try to get away for the weekend,
so our own home is empty. Environment is very important to
Stephen, like many of us, he loves being at home. We would
like Stephen cared for in our home where he is happiest but
that is not possible. Sometimes the benefit of the respite is
gone with Stephen’s anxiety before and after. What do you say
to Rachel my 10 year old little girl when she says Mum I am
glad you are not leaving me in a place like that?
Avril Webster Page 9 of 13
Choice is important, if we look at other industries for example
many of us have changed our phone, gas, and electricity
providers in recent years and we know with voice and choice
quality improves and we get better value for money.
And finally to get a level playing field we need training and lots
of it.
Next slide training
Training
We need to actively fund, coordinate and train family
members.
Every paid person involved in Stephen’s life has to do a manual
handling course, yet as his Mum I have never been offered this
training. We need ongoing training in self care skills. We need
to develop a toolkit to support and train families at different
stages of their lives. And this is real value for money
investment. By building true capacities within families, you will
decrease the number of emergency crisis cases.
And so with information, support, choice, training we would
begin to move to an equal relationship and a closer working
relationship.
Equal
Next slide equal
We need to be equal in voice, equal in leadership, equal in
influencing policy.
If we are serious about change and better lives for people with
disabilities, families need to be supported to be an active
Avril Webster Page 10 of 13
valued voice. Change must come locally from grass roots driven
by families and advocates.
We cannot do it without help and support.
Next slide - community
Changes in community
As I move to talk about community, I want to talk for a minute
and culture and attitudes. When we talk about change in the
disability sector, we have to look at the context from where
families are coming from or where families are sitting at the
moment. And this is a complex cultural issue. I want to take
you back to my story where I said Stephen was three months
old and we received a diagnosis from doctors to say he was
brain damaged. I know the Federation has done some
wonderful work with the Informing Families project, but in
general getting that news from the doctors that your baby has
a lifelong disability is a dreadful experience.
Next slide beaten down slide
Many times, from that moment on, you as the family receive
the message that you are not good enough to care for this
child, you are not up for this. You need a therapist for this, that
and the other thing, as all these strangers enter your life and
home. You are thrown into the special world, the world of
disability. It is one thing learning to be a Mum to your baby that
needs extra help, but it is quite another to learn how to
navigate systems and learn how to get help.
I know most of you here work with adults but I think it is
important to understand how attitudes are formed within
families. Our children spend many years in school somewhere
Avril Webster Page 11 of 13
in the region of 14 years, because of the way the system works,
in order to get any help at all from the department of
education within a school setting, reports have to be written to
paint the bleakest picture possible of your child.
We have many of these lovely reports explaining Stephen
challenging behaviour, severe this and that, many of them
running to 20-30 pages. This happens throughout the education
system and let me tell you even if you try to detach yourself
from this negativity some of it sticks in your head and limits
your own hopes and dreams for your child.
And then magically at age 18, someone mentions the word
person centred plan and asks you what is your vision for your
child for the future, you sit there blankly when you have had
years of it being battered away.
This bashing affects us in many ways, giving us that feeling of
‘stuckness’, it also affects our ability to be active voices, as I
said earlier, we need support.
In Ireland today there is still a stigma attached to having a
disability or a family member with a disability. We have not
been good at raising awareness and social education. It is often
difficult to link to your community.
Next slide community understanding
For example, Stephen has sensory processing disorder which
means his senses are out of sync and work differently. He hears
things much more loudly than we do and is very easily
overwhelmed. He craves certain textures, one of his favourites
is girls long hair.
Avril Webster Page 12 of 13
It is hard to go out and do everyday things like going shopping. I
can be standing in the queue in the supermarket and there I am
with our basket of things and I see a teenager in front with long
hair, I catch Stephen just as he is going to pull it and quickly
manoeuvre him to next queue. Next thing we hear the meat
slicer in the butchers at the back going with that noise and I
know I have 10 seconds before Stephen may lash out and start
heading his head. He looks like he is misbehaving but actually
he is telling me that this environment is very overwhelming and
difficult for him. Sometimes I meet lovely people who
immediately let us go ahead in the queue and are very helpful.
However lots of times you meet people who are not so nice,
you are asked to control your child, often their body language
and look in their eyes says it all.
Sometimes I am in good form and I will explain sensory
processing disorder but as is often the case I am tired having
been woken 10 times the night before I will just drop that
basket and get out of there as quickly as I can before I burst
into tears.
So my point is we have a lot of work to do in the community to
see everyone as individuals and equal valued citizens. There
needs to be planned, directed training and information into the
community. This cannot just happen on its own. Service
providers need to become our allies to help support the link to
communities and reduce isolation for people with disabilities
and their families.
Avril Webster Page 13 of 13
Next slide Stephen with Rachel
As I finish I want to say that we are all nervous of change, but it
is about all of us having courage and stepping up and doing a
better job because we are talking about people’s lives, people
like my son Stephen.
Next slide Stephen collage
Stephen has his own gifts and strengths, he needs support in an
individualised personal way. As his Mum, I want to chance to
help create a great life for him. In the words of Ann and Rud
Turnbull with whom I did training with some years ago, I want
to help create an enviable life for Stephen, with Stephen at the
centre and receiving services and support him to allow him do
ordinary things in the real world, not just the special world and
to help him fulfil his dreams. He deserves nothing less.
Next slide questions
My main question for this week which I would like your help on
is how can we create a good life for Stephen?
I believe we need to do this by offering choice, better support
and establishing strong community involvement.
Next slide – thank you
I look forward to hearing your thoughts and thanks for
listening.