I’m doing it my way…

I have lived in a number of group homes for more than five years
and am currently in a flat in the grounds of a residential care
home in Morden, south London.

For two years I have been campaigns officer for People First, a
self-advocacy organisation run by people with learning difficulties
for people with learning difficulties. We campaign for our civil
and human rights. I have to stand down as campaigns officer at the
next AGM, but I will still be involved in People First’s campaign
work.

I am also co-chairperson of the National Learning Disability Task
Force, which the government set up to help make sure the ideas in
the white paper Valuing People happen. Chris Davies, director of
social services for Somerset Council, co-chairs the task force with
me.

When I started at People First my old care home and my old case
manager said I would not be able to travel on my own to London
because they said I was a vulnerable adult. My old care home also
rang the People First office and told my support worker
confidential information about myself. It was not until my support
worker said that they should not be giving this information to him
that they realised that they had broken confidentiality and stopped
what they were saying.

One day the night staff did not tell the day staff that I had left
the house early to go to a Department of Health meeting. This
resulted in me being reported as missing to the police. When I
arrived at Victoria Station I was approached by the police who made
me get into a police van in front of hundreds of people and drove
me back to the group home. It made me feel like a criminal, but at
least I had the satisfaction of the staff being told off for
wasting police time.

The place where I live now treats me with more respect and the
staff don’t boss me about. I still have lots of day-to-day
problems, though, with getting information and services. I have
been waiting ages for an assessment to get a handrail and step for
my bath. I spoke to Surrey social services which funds my
residential placement but they told me I needed to speak to Merton
social services where I live. I am always finding a problem with
getting anything I need because I am an “out of borough placement”.
I am so frustrated that I am thinking about getting the handrail
fitted myself.

I have also been trying to find out about direct payments from
Surrey and Merton social services, but the information I have been
sent is not accessible for people with learning difficulties. And,
like the handrail, Merton and Surrey cannot agree who is
responsible for my claim for direct payments.

The things I have done over the past couple of years have made my
life much better. I feel that my life has improved despite social
services rather than because of social services help.

Michelle Chinery is campaigns officer for People First and
co-chairperson of the Learning Disability Task Force.