Transcript Slide 1

‘Family Voices’
Life in Ireland for families of people
with an intellectual disability
How we did the study
• We did two research studies:
o Focus groups study
o A Concerns Report Survey
• We conducted focus groups with families
in Charleville, Clonakilty, Drogheda,
Dublin, Ennis, Kildare, Kilkenny,
Rosslare and Westport
• 70 family members took part in the focus
groups.
How we did the study
We asked the families:
• Tell us what life is like as a family for you?
• Tell us about instances when things have gone
really well for you in terms of “family support”
and “family needs”?
• Tell us about instances that have been
especially tough within the context of “family
support” and “family needs”.
• If you had a choice what one change would you
make for your family to have a good time?
• What would be the one thing you would do
differently for your family to have a good time?
Findings
• A survey was developed from the findings
from the focus groups and distributed via
post, internet and email.
• We analysed them by reading & grouping
things people said into themes
• 539 families completed the survey, 101
online and 438 by post.
• We identified family strengths & concerns
o Concerns were important things that
families were not satisfied with
o Strengths were important things that
families were satisfied with
Family Voices Survey
How important is it to you that…
How satisfied are you that…
service staff take the time to get to know you
Not
1 2
At All
3
4
5 Very
Not At
1 2
All
3
4
5 Very
1. Family Challenges across the
Lifespan
we constantly say he’s capable of more. (Dublin)
I was very put out about my son’s behaviour … he’d take to flopping
down on the ground in supermarkets … and up in the centre they’d no
way apparently of helping me at all when I asked them…trying to
cope with that on my own as I did for a few years was absolutely
exhausting you know. (Dublin)
There isn't any planning that we know of you know
what we mean. It's also the interaction between the
service telling you what their plan is. And what
planning can we make? (Charleville)
2. Availability of Information
The service providers don't provide...They should all have the
information but they don't, they won't give it to you unless you
look for it. (Westport)
…people are not, they
can't get accurate
information. They can't
obtain it. So, that
information is hidden.
It's about funds, it's
about the rights, it's
about the services.
(Charleville)
the information is not there…to find… what
services are in your area and how to
access them and it would be an absolute
godsend. (Clonakilty)
…most of the parents there did not know that
there was a respite, there was a domiciliary
care allowance. (Kilkenny)
3. Being adequately &
appropriately supported
For instance where she is now there's no physiotherapy, there's no hope even
bringing her to another centre. Those things, speech therapy, there is no
occupational therapy. There is so much missing, you know. (Kildare)
…you have no choice if you
don't like the psychiatrist and
the psychiatrist doesn't like
your or your child, you have no
choice. (Charleville)
now they're focussing on
each individual and it's what
they want to do and if they
can facilitate that they will
(Kilkenny)
She is a citizen of this country. She should be entitled to a service that
suits her. (Rosslare)
4. Relationships & Communication
with Services & Professionals
But a positive thing or a good
thing about where he's going,
they bend over backwards. They
have the person centred plan and
they want to know what you
think, what he thinks, what I
think. (Kilkenny)
This is just all wrong is that parents have
to push everything. And when they know
- a parents knows when there is
something wrong with their child and
they need to be listened to and if they an
assessment on their child they should be
listened to. No-one knows their children
better than we do. (Westport)
service providers tend to take over a bit
more because they want them to have
independent living skills which is
fantastic… and you are sort of left out in
the cold a little bit. (Clonakilty)
I’d say for the need for the
service providers to listen to
the parents a lot and also to
listen to the people with
disabilities. I was just on
about that this morning
before I came out, to the
service, you know. They just
don’t listen. (Dublin)
5. Having to Advocate & Fight
So, you fight for everything.
And that's the killer battle,
parenthood of a child with a
disability. Your time is taken up
looking after the child and yet
you have the go to fight for
every service you want. They do
not come to you irrespective.
(Drogheda)
I just think we as parents shouldn't have
to fight for basic human rights for our
children. (Drogheda)
We've got to (fight). Because
nobody else will do it for us.”
(Kildare)
We can do nothing about it now,
we've run our race and that's it.
And we - but we've spent a very,
very frustrating time. (Drogheda)
If we say something to the
service you always feel that
there might be a backlash on
the child. (Dublin)
6. Attitudes towards disability
& the family
you can't imagine what it's like.
I live in a small village, to see
her walk out alone and nobody
speaks to her…It's the biggest
single hurt to parents across
everything is the fact that their
child is not acknowledged.
(Westport)
other parents from her class
would come up to us, and say
I’m so delighted your daughter
is in our class, because it’s
enhanced our child’s life and
behaviour. (Dublin)
People do not want to associate with
anybody with a disability unfortunately
(Westport)
We were brought up to feel different
because our brother was different. And
I’m very glad to see that, that day seems
to have almost gone. (Ennis)
I think an awful lot of it as well is lack of
education on the part of the average
person as to what a person of a child
with disabilities entails on a daily
(Drogheda)
(I) was told (By services) there was no options and that there
was also people much worse off than myself. (Kildare)
7. Policy, Government Support
& Funding
Yeah I think parents should have more input into what's
happening with the money and where it's going. And have
more say in what the child could be doing. (Clonakilty)
that there was a proposal
… that every person with
disabilities would have a
life plan … And that … the
appropriate services
would become available …
at the appropriate times …
we felt this was a great
thing. But … we never
heard any more about it
after that. (Drogheda)
…health service is built from the top so when
you get to the bottom there's nothing. There's
no money. Instead of building it from the floor.
You build it from the patients and people with
disabilities. You build around them and then you
work your way up. We don't. (Drogheda)
We’d terrible problems, sure M____ loves, loves
the day he goes out to work, he loves, it’s the
thing of his life but last year the medical card
was taken from him because he was making
fourteen pounds. (Dublin)