A self-advocacy story: Marion

Marion's story

The staff at my house had tried to explain that L*** (the company they work for) had lost the tender to another company.  I didn’t understand what it meant. 

Staff explained in a way I could understand a bit better and then I was really worried.

A social worker had been to my house a few weeks before and asked me about what I wanted and I said I wanted to stay with L***.  On the second visit she asked: “Now that I’ve met you twice would you let me support you?” 

I did say yes but I was nervous and didn’t know what else to say - she didn’t say we would be included in deciding what was to happen. 

I have got to know lots of people at L*** not just workers in my house. I am happy with them - they support me to go on holiday, when I need to go to the doctors or with anything I am worried about. I know the office staff and the people and workers at other houses.

The other people in my house had said the same as me - they wanted to stay as things were. Some of us had been in places we didn’t like till we moved here, and we wanted it to stay the same, but now that wasn’t going to happen.  

When I was told about the changes, I was very upset and did not want to lose the L*** support. The other two people in my house said the same. I felt I did not know what to do, and could not sleep thinking about it.

Next day I spoke to my self-advocacy group and explained what was happening. People listened to me. I was able to get support from the group and we mentioned the problem at the Learning Disability Partnership Board. The decision was looked at again after this and now my house has stayed with who we want to support us.

I still feel unsettled thinking about not knowing what was meant to happen - and if I had any choice. All my housemates were distressed not knowing what was happening and people not listening to us. I was very anxious as I felt I was not listened to when I had said who I wanted to support me. I felt all my choices were taken away and I was not important - all the time I have had support I’ve been told whatever happens to me is my choice - and that it’s not for other people who don’t know me to make choices for me. 

It was really good being able to do something about the changes being made to my support - I wouldn’t have been able to do this if I hadn’t been going to self-advocacy sessions.