The mother of a young adult with Asperger syndrome explains the difference that Disability Living Allowance (DLA) has made to her son - and shares her concerns about the effect of the Government's proposals to reform the benefits system.
"My youngest son, Stephen, is now 20 years old. He was diagnosed with Asperger syndrome/ADHD and motor difficulties aged 8. I applied for DLA for him, as I recognised that this was also a way to register his disability.
"At first we were refused and I had to put in an appeal. This was successful and gave Stephen lower order for mobility and middle order for care... When he was 16 and it came to applying again I thought this was the time they might stop it - however, to my surprise, they awarded him DLA until his 25th birthday.
"Stephen did a year at college and finished in 2008. After that time he remained at home with no services, his world shrinking and his interaction with people becoming very difficult. Although we were working with the local authority to try to provide services, nothing was happening. My husband and I took the decision that we would use his DLA and his Incapacity Benefit to pay for some outreach services for him. We felt that this was a good use of his benefits as it would give him the opportunity to get out of the house.
"He began by meeting an outreach worker for three hours every Thursday morning, going on buses, doing simple things like going to the library and reading papers, visiting a café to buy himself a drink, playing pool or snooker.
"If Stephen did not have access to these benefits, his world now would be very small and his ability to communicate and interact with others would become very limited.
"From this he was encouraged to attend a local social group - but this meant travelling to a town ten miles away by bus. Initially my husband travelled with him, waited the two-and-a-half hours for him and then travelled back. This cost Stephen £12 so his DLA and Incapacity Benefit again came into use. He now has a travel trainer working with him. We feel it is really important that it is not us who travels with him all the time because we don’t open up his world. Also, as a mum, I am very aware that I hold him back because I am fearful for him - it’s what mums do!
"Stephen finds it difficult to wash his hair, so we have just managed to get him to agree to go to our hairdresser on a weekly basis to have his hair washed. They are also teaching him how to wash, brush and comb his own hair. There is a minimal cost involved which he can pay with his benefits.
"The change in my son is immense - he is now more at ease with other people, he is happy to go out and about. He went with his outreach worker to do his Christmas shopping and buy his dad a birthday card. He didn’t have to wait for me to have some time to be able to do it with him. He has joined the local snooker club and is comfortable going there. He is becoming slowly more independent and enjoying that independence. He looks forward to his two days out and it gives him some additional routines and structure that helps him.
"Given that it is so difficult for adults with Asperger syndrome to access services via the local authority (we have been trying for about two years) it feels right to use Stephen's DLA to ensure he gets some service, albeit limited.
"If he is denied DLA or Incapacity Benefit in the shake up in the welfare system, I cannot stop what we have started so would have to fund it myself at a cost of £80–£90 per week. There is already pressure on us as a family as Stephen makes a very small contribution to the household budget - he cannot pay for his outreach service and make a real contribution.
"If Stephen did not have access to these benefits, his world now would be very small and his ability to communicate and interact with others would become very limited. I fear for his future with the proposals to change the welfare system. I want my son to be happy, to be a part of the community and to open up his world."
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