Service User Voice: No support in testing time

I moved in with my partner nearly four years ago. It was a big step for us that we didn’t take lightly, not because we both have a disability, but because of the barriers to support (the medical model) we knew we could face.

We decided that I would move into Pete’s flat as it met his physical needs and he had family and friends locally.

When I moved in I rang social services to get in place the support that I had had before. They told me that I couldn’t have any support because I had to prove that I had a learning disability. They said this meant that I would have to go for an IQ test. I tried to go for the test but it wasn’t very friendly, there were no pictures on the walls – in the waiting room the only thing they had up was a sign saying please can you put your fag ends out as the people here eat them. Upstairs was even worse. The walls and doors were all white, with nothing hanging on them. The room we went into was just white it really did upset me and so I said I couldn’t go through with it.

After I moved in I found I needed to do a lot more things for Peter than I had thought. A friend described me as a carer. No one had thought of me as a carer before. We asked to be assessed and I was given vouchers to spend at a local agency, instead of the direct payment I had asked for. This worked quite well, although the only agency in the area that accepted the vouchers had staff wearing uniforms, something that support staff working with people with learning disabilities had stopped doing years earlier, and they often did things for Peter rather than with him or support him to do them himself.

I wanted to plan for more support when I had an ­operation that would put me out of action for a time. But nothing was put in place and we had to rely on Peter’s family. I might need another operation soon, but I’m putting it off because of the lack of support for us. I am still not getting any support for myself as a person with a learning disability.Seems like services are being cut back everywhere.

Because of the difficulties we saw carers with learning disabilities facing we decided to set up the Who Cares for Us? project. 

Eve Rank has a learning disability and is a carer and campaigner