I have been working with a children’s charity to support the closing down of institutions in central and eastern Europe.
The young people in the institutions I visited did not have any privacy or any choices about how they lived. In one of the institutions, they lived in cots in overcrowded rooms, rather than in beds in their own rooms. I realised that I would probably have been living in an institution like this myself if I had been born in that country.
I went to three or four big institutions in Europe. Although they were building small group homes, I thought they were still a bit too big, and still smelled like a hospital. But they are moving forward.
Doing this project, The Rights of Children – Europe, and watching them move people into group homes, has made me think about what happens in this country and how things have changed since the institutions closed down.
When I came back, I wanted to find out if group homes were really making people live independently. Do they get choices and do they feel like they are getting the best?
One person, David*, said he has had loads of problems with his group home.
He told me: “Some people say there has been a lot of change since the institutions closed down. There is some change but I think there needs to be a lot more. I don’t feel listened to in my house. I feel walked over.
“They need to have a lot more understanding of listening to young people. You go to your manager and say ‘this happened’ and they say they believe the member of staff and not you, the person that lives there.
“I don’t feel in danger but I feel very frustrated with how that care really is.
“It is supposed to be independent living but it isn’t like that at all. We are supposed to do a lot of our own cooking but the staff do it all.
“I am planning to get a car on Motability by using my disability living allowance but one of my care workers said she doesn’t want to drive the car because it will damage her insurance and she feels like if I have a car I will not be able to drive it myself.
“One of the girls in my house has an accessible car and her mum keeps it at home. So she is having to pay for taxis because her car is not at the group home where she lives, it’s at her mum’s, and she only comes to visit once a week.
“My care plan says I am supposed to go out once a day with support, but I am not even doing that. The staff support me to go out, but they say if I don’t tell them the night before I can’t go out. And I have to do a rota a month in advance.
“It got so bad that I have a social worker involved. The staff are getting a little better, but it is only because of the social worker.”
When I talk to David I can see the frustration because he doesn’t think this is independent living at all.
I think other people with learning disabilities feel the same way. The support staff are not trained properly to deal with people with learning disabilities. I feel like some of these group homes are like institutions. What if the people who live there want to go to work? Do they have to plan a rota?
Our concern is they are really not listening to the clients about everyday normal things. I think staff members need to be trained properly around communication support and attitude. There is bullying in there, too. There is no respect of us.
I think you need to have people with learning disabilities going round with inspectors when the Care Quality Commission inspects the homes. People with learning disabilities always prefer to talk to other people with learning disabilities about the issues because they are scared about talking to the professionals.
If there is training, I think people with learning disabilities need to be with a person when they are being trained.
Attitudes need to change. And there has to be better communication. We want choices, respect and listening.
*Not his real name
Shaun Webster is a project coordinator with CHANGE, a national human rights organisation led by disabled people
