A question of support

Government policy promotes community care, but what does it mean in
reality for someone like me who needs 24-hour support to live in
the community? Having tried and been physically abused in
residential care, at the age of 35 I was still living with my mum.
When social services broached the idea of me living in a flat with
support, I jumped at the chance.

An independent living scheme was being set up in my area enabling
users to employ their own personal assistants. I was believed to be
a good candidate. I thought: “Great. This will me the freedom I
crave.”

My flat was not ready when I found my first support worker, but I
was advised to hang on to him so he slept on my mum’s sofa, not an
ideal start. Unfortunately, the scheme could not offer the support
I needed to recruit and retain staff, so I started using agencies.
The first agency employed support workers to live with people for
three months. I lead a hectic life as well as needing everything
done for me so this was hard going for everybody. When they took
time off I had to ask my mum to come and fill the breach. This was
not quite how I had envisaged independent living.

Managing staff and my own home was a huge step, one I don’t think
the professionals understood. A number of problems could have been
avoided by regular supervision. Instead, I lost my temper with
staff when I did not feel people were listening to me and
respecting that they were in my home, and as a result have now been
labelled as somebody with “challenging behaviour”.

The second agency employed support workers to do 24-hour shifts.
This appealed to me; I would get a variety of people working with
me and at last I could be independent of my mum. I had support
workers that couldn’t speak English, could not operate hoists,
threatened to leave me alone at night and a worker who had had a
nervous breakdown and then had his second one in my flat.

Without asking me, staff decided I should be feeding myself. The
instruction to staff was: “Carl should be encouraged to feed
himself. If he makes a mess he should hoover it up.” I have never
been able to feed myself. Where is the right to choose and my
dignity in this? The final insult was when the agency called saying
they would not be able to staff the following week – leaving my mum
no choice but to pick up the pieces. We do not want to live
together anyway, but what’s the alternative?

My care manager says all it takes is a telephone call from my mum
to get me removed from her care, but will this action resolve the
situation? Of course it won’t. One may ask how seriously social
services are taking their duty of care towards me.

In three years I have only spent seven full weeks in my flat. The
rest of the time I was at my mum’s home. What I need are good
quality resources to turn community care into a viable option for
people like me – not this living nightmare.

Carl Barton is a service user.