When I took the big decision to move from St.Ives (Cambridgeshire, not Cornwall) to London, it was for the same reasons as every other 24 year old. It offered career progression, investment in share of a London property, which means anywhere in the world is affordable now, and a much more lively social life. Ok, so I enjoy the odd night out, but I also like museums and the many other cultural benefits of the capital. It’s tough for me to describe my move to London ‘as a disabled person, who relies on services from a local authority’, because I did not see myself as particularly disabled. Ok, I use a wheelchair to get from A to B, a hoist to go from my wheelchair to bed or shower and support workers to carry out various other tasks. ‘Not disabled?’ I hear you ask. You see, if I had the attitude of ‘I am disabled and moving to London’ I would not have dared made the move, nor done half of the things in my life.
Disabled by bureaucracy
The point at which I was really disabled is glaringly obvious and it was due to a slow, impractical bureaucratic process that put money ahead of common sense. My crisis began when my new social services department scheduled my ‘care needs assessment’ after the date I moved home. Their report was left untouched for a further six weeks, before it went to a panel which approved three hours support per day. Try a further 21 hours and we’re there!
Mike Tyson in my corner
So I wrote to my MP to complain and sent doctor’s letters and further complaints to social services. Eventually over four months after I had moved a meeting was arranged with a new social services representative and a third party called the Independent Living Fund (ILF), who were joint-funding my ‘package’. Fortunately the ILF representative was very much in the know on the legal and general obligations of social services and helped to get a better decision, and they continued their own funding too! It was like having Mike Tyson punching heavyweight disability knowledge and flooring social services!
Tough time
It was a tough four months. I was nervous and stressed, I felt low and I was questioning my ability. Without the right support I cannot bathe, eat, do household chores or socialise. I seriously thought about quitting my job, selling my flat and moving back to St.Ives. What an awful prospect after all the effort I went through to get a job and a flat in the first place. And, I do not want to go into the housing issues I faced prior to this. But, what a relief! I’d got the support I am entitled to, which allows me to work and participate fully in society.
Money protection services
My situation highlights the strenuous efforts and methods undertaken by social services to protect their budgets. It shows that people like me need to know the assessment process inside out and good deal of jargon too – a bit of a Catch 22 situation, as you have to go through it first to really understand it. In my opinion there is a ‘social care crisis’ and the system needs to be improved. We need to continue to lobby the government to prove that direct payments and individualised budgets are important as they allow an individual to be flexible and choose where and how they live. We also have to lobby local authorities to implement a less stressful and more sensible assessment process.
Sharing knowledge
Where the system fails it is crucial that an advocate is available to step in and voice the needs of a disabled person, who is often unable to express them in a way social services demands. I know I’m not the first person to be disabled by the process of moving home. I probably won’t be the last, but I’d like there to be a way for disabled people to transfer their knowledge of how local authorities work.
