‘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 . 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 At All 12345Very Not At All 12345Very

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) 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) …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) …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) 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) 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) 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) We've got to (fight). Because nobody else will do it for us.” (Kildare) I just think we as parents shouldn't have to fight for basic human rights for our children. (Drogheda) If we say something to the service you always feel that there might be a backlash on the child. (Dublin) 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)

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) …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) 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) 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)