TEENAGERS who are disabled suffer from a sudden and nightmare-like drop in support once they become adults, a report by the Christian charity Livability says.
Things will not get better until health professionals are legally required to help plan the transition from children’s to adult services for these young people, says the report, Freedom to Live, from the charity, formed last year by a merger of the charities John Grooms and the Shaftesbury Society (News, 18 April).
“We believe that real and lasting change will only happen when doing nothing is no longer an option,” it says. Some families described the struggle to find support, once the young person becomes an adult, as a “nightmare”. They were “full of anger” at the sense that services they had fought for “simply disappeared at transition to adulthood”, the charity reports.
Lack of planning and too few facilities mean that many teenagers are treated like disabled pensioners rather than young adults, it says. “The services that are offered to disabled people are often designed with much older clients in mind.” One mother said her young son had respite care in a unit with 70-year-olds; for a young woman, then 18, her respite care was among “all old people”.
“The disabled young person can end up feeling that they have moved not from childhood to adulthood, but from adolescence to retirement,” the report says.
By the age of 25, young disabled people are four times less likely to be in work than their able-bodied contemporaries, and 40 per cent have nowhere to live suitable for their age and needs, Livability says. To give them choice, one in ten of all new social housing units should have wheelchair access. They should have sufficient places in special schools, and an individually tailored and balanced curriculum. They should also have advocates.
The Priest-in-Charge of Hathersage with Bamford, Derwent and Grindleford, the Revd Katie Tupling, who has cerebral palsy, said that the report was right. Her experience had been that if the NHS could not fix you by the age of 18, it regarded you as “chronic”, needing only maintenance. “It certainly is an issue.”
When, aged 19, she had needed surgery, her medical team “snuck me back into the children’s ward in Bristol hospital for that. I had great support from the surgeons and from physio, but they have to answer to higher authorities. After 18, you get no further phsyio: once you’re an adult, you are seen not as acute, but as maintenance. But if I get a strained ankle, that’s not maintenance from my point of view: it’s acute. If it’s not fixed, it becomes worse.”
One of the most important actions church people could take when they recognised that someone’s need was being overlooked was to act as their advocate, and offer them a voice, Mrs Tupling said.
A “transition guide pack” is being produced by the charity, and will be available in the autumn from Livability, 50 Scrutton Street, London EC2A 4XQ. Phone 020 7452 2000.
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