Disabled young adults 'missing out on care'

Young adults with complex needs may be missing out on care

Children with a range of disabilities are not getting the care they need when they grow up, according to a report.

An increasing number of people with a range of physical and learning disabilities such as cystic fibrosis are surviving into adulthood because of improved care in childhood.

But many are being failed by health and social services when they become adults, says the Joseph Rowntree Foundation report, Hurtling into a void.

It found that often young people were not given accessible information about their medical conditions and the treatments they were given for them.

Many had had access to specialist health services as children, which ceased abruptly when they turned 16.

Some complained that their GPs did not make any effort to understand their multiple needs or to communicate with them and did not understand their specific conditions.

In extreme cases, lack of understanding of a client's multiple needs could shorten life expectancy, said the report.

'Warehousing'

One man told researcher Jenny Morris: "When you get to 16 they get rid of you...I haven't been to the hospital for a check-up since I was 16.

"I know I'm OK at the minute, but a lot could happen. No-one's mentioned to me what happens to my condition as I get older."

The report is particularly critical of accommodation for people who need a high level of support.

It says very few options are available to them, with the result that they feel they are being "warehoused" into residential provision, often far from home and friends.

"They have little opportunity for making friends, being involved in their local community, or doing anything meaningful during the day.

"To a large extent, the scope for any personal development has ceased," says the report.

It blames a lack of good quality community settings for people with high support needs, a shortage of wheelchair-accessible housing and the cost of small-scale housing.

And it says many of the supported living projects that exist for people with learning difficulties are not suitable for people with a range of needs, including health problems or physical disabilities.

The report acknowledges that there are some child to adult transition services around the country, but says provision is patchy.

It says different agencies, including health, social services, employment and housing, should work better together to ensure that their needs are met.

'Fragmented care'

John Buttle of the British Association of Social Workers said the report showed the need for a transitional programme.

He added that the demise of generic social services teams and the concentration on specialist areas meant provision of care had become very fragmented.

But he admitted there were some advantages in specialisation.

He believes the solution lies in appointing a lead worker in a lead team, probably social services, to coordinate care.

But he added that the government needed to acknowledge the extra resource implications of funding transitional care.

Brian McGinnis, a special adviser for Mencap, said it was good news that more people were surviving into adulthood.

He said there was some good transitional programmes around and blamed "awful planning" for the poor care some people received.

"Care agencies need to recognised that continuity of care is very important," he said.