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TX: 16.08.07 - Transition Care

PRESENTER: PETER WHITE
THE ATTACHED TRANSCRIPT WAS TYPED FROM A RECORDING AND NOT COPIED FROM AN ORIGINAL SCRIPT. BECAUSE OF THE RISK OF MISHEARING AND THE DIFFICULTY IN SOME CASES OF IDENTIFYING INDIVIDUAL SPEAKERS, THE Βι¶ΉΤΌΕΔ CANNOT VOUCH FOR ITS COMPLETE ACCURACY.


WHITE
Now parents who've been able to rely on comprehensive services for their disabled child can often get a very nasty shock when that child approaches adulthood. Suddenly it's not clear whose responsibility they are and in some cases parents can be left with no care provision at all. Things like care outside the home; further training for adult life; perhaps respite care and in the home, particularly for severely disabled people, more physical help such as lifting and toileting.

This was the situation that faced Peter and Wilma Wright. Earlier this month the local government ombudsman published a highly critical report about the case of their disabled daughter, Carly, whose needs were not met when she came of age and moved from children's services to adult care, a period known as transition. The Wright's were awarded £100,000 to cover the cost of the care they'd had to provide themselves. Carolyn Atkinson reports.

ATKINSON
Carly Wright is now 25 years old and for the past two years has been living with her parents, Wilma and Peter, at their home at [indistinct word] in Trafford. Carly was born in 1982 with a brain tumour which has left her with multiple learning difficulties, she can't speak, she uses a wheelchair most of the time and needs 24 hour care. After leaving school at 19 she went to a college for three years, then it was agreed she'd spend an extra year there living in to prepare her for transition to go to supported living in the community. But two years on she's still waiting.

WILMA WRIGHT
The whole idea of this final year was that there was going to be a place for her to live, to move away from us, it was for her to learn to live without us and for us to learn to live without her - transition. And it became apparent during the year that there was nowhere for Carly to go to within the borough.

PETER WRIGHT
We were starting to get worried because we felt - you know they had enough time to sort something out, she had been there for four years. And at the very beginning they knew it was all part of a transition, that she would eventually move out and move into a place of her own.

ATKINSON
By 2004 Carly had been given her fourth social worker in four years. By February this year she'd had six different social workers. And finally after contacting the ombudsman in 2005 her parents were given two offers of two unsuitable places.

PETER WRIGHT
I think they were clutching at straws to be honest, they were just trying to patch up a bad job.

ATKINSON
What sort of offers and suggestions did they make to you?

WILMA WRIGHT
In Carly's final year none. The place which was initially offered to us two weeks after we contacted the ombudsmen we felt immediately that it was not the right place. They couldn't answer any of the questions of how they're going to continue the therapies. The other place we were offered was a very small two bedroomed house and there was only an upstairs bathroom.

ATKINSON
Councils are obliged to plan the period of transition, holding the first meetings when the child is around 13 or 14 years old, this often doesn't happen. After Carly moved back home her behaviour deteriorated because she was so frustrated. But Peter and Wilma Wright deny they were shirking their responsibilities.

WILMA WRIGHT
I mean I moved out when I was 21, my husband moved out in his early twenties, just because a person has learning disabilities doesn't mean to say they have to live with their parents for all their lives. Carly got so frustrated because you cannot explain to her why she wasn't going where she used to go and even I went down the road in the car to that direction of where she used to go to college she got all excited and then if I then turned the other way she got so angry in the back of the car that she actually started shaking the chairs and she just couldn't understand it and she was very frustrated.

PETER WRIGHT
They don't realise that there are actually dealing with people's lives, they're human beings, they're affected by the decisions they do or don't make.

ATKINSON
At the moment Carly is still living at home and attending a day centre. The council is now promising her a place at a residential unit which is currently being built by a housing association and will be run by Mencap, which may finally see her moving into suitable accommodation next year, just after her 26th birthday.

WHITE
Carolyn Atkinson and she was speaking to Peter and Wilma Wright.

Now complaints only go to the ombudsman after people have gone through an official procedure with their local council, people complaining about all aspects of social services care has risen to almost 1500 a year, that's up 10% over the past four years at a time when there's been an overall drop in complaints about all other council services.

Carly's case was investigated by local government ombudsman Anne Seex who retrospectively awarded Carly's parents that £100,000 for the care they provided.

SEEX
Our purpose in recommending remedies is to put the complainant back in the position they would have been in if maladministration hadn't occurred. And Carly's parents have now been caring for her for two years with very little support and help and I calculated that the college place had been costing £1,600 a week and that it was fair given that that place was giving much more service than her parents could, it was education as well as therapies, but that it gave a reasonable benchmark for saying that a £1,000 a week for 24 hour, seven day a week, care seemed to me a reasonable sum to remedy the injustice that's been caused. I also wanted the council to get an independent - a completely independent assessment, done by somebody who had not been involved before, who Carly's parents would have confidence in. And the council are very, very reluctant to do that, in fact won't agree to do it.

ATKINSON
What particularly annoyed you about this case in the way the council acted?

SEEX
What concerned me was that having failed to make proper arrangements for Carly when her college place was due to come to an end, the college place was still available to her and the council refused to let her go, would not pay the college fees for her and left her parents to care for her without support.

ATKINSON
And that begs the question why did they think that that placement was suitable for the previous four years?

SEEX
Quite.

ATKINSON
What are your thoughts on that?

SEEX
I think it's very hard for the local authority to be able to justify its view that because she gets to a certain age there's a centre which has well met her needs until then was no longer suitable. And it certainly would have been preferable and much more in Carly's interest for her to stay there until a permanent place was found for her than to be left without a social life and entirely in the care of her parents.

ATKINSON
And do you think that was financially motivated then - that it was the cost that was the factor?

SEEX
It is clear from the evidence that cost was a major factor in the local authority's decision.

WHITE
Local government ombudsman Anne Seex.

Well the council involved in this case is Trafford. They said their main concern is Carly's wellbeing. They say they've tried hard to look after the Wright family and are pleased that the ombudsman recognises they've been trying hard to find a placement. However, they say they accept that they could have done better and have apologised to the family, saying she is now well supported at the day centre and plans for Carly's long term care are well advanced.

Well joining me is Steve Broach from the campaign group Every Disabled Child Matters. How big a problem is this issue and how much of an isolated case is the Wrights?

BROACH
Good afternoon Peter. I'd say it's a major problem and what the ombudsman case here highlights is really the tip of an iceberg with thousands of young disabled people across the country being let down in their transition to adulthood.

WHITE
So do you know of lots other cases like this?

BROACH
We certainly do. A group of MPs looked at this issue last year and they described transition to adulthood as a black hole for young disabled people. And a case that they highlighted in their report of a young man who went to an FE college at 16, which assured the family they could meet his needs, then excluded this young man after simply two hours on his first day and then finally permanently excluded him. As a consequence his behaviour deteriorated, his family broke down and he ended up in a very expensive long term residential placement. And that again - it was just another example of this problem which is going on across the country.

WHITE
So quite apart from the issue of humanity, it's not even economically viable then?

BROACH
It's certainly not no, not supporting families is a very poor way to go about running our social services. We know that 80% of the families in a recent survey by Contact a Family and the Family Fund said they were getting no support at all or the bare minimum and as a result 8 in 10 families again have described themselves as close to breaking point. So this situation can't continue.

WHITE
So why isn't it working, who isn't talking to who?

BROACH
I think the fundamental problem we've got is low expectations of what disabled young people can achieve and a lot priority for disabled children and young people historically in the way services are planned and delivered. And as a result there's been no funding for specialist services and equally importantly mainstream services haven't been taking their disability equality duties seriously and disabled children and young people haven't been high up the agenda sufficiently.

WHITE
Carolyn Atkinson in her report she mentioned that there was supposed to be meetings at age 13 or 14, if these aren't happening what needs to happen actually to make sure that they do?

BROACH
Well that's right, two-thirds of parents in our survey say that they haven't yet got a transition plan for their young people. We need delivery on the existing structures, the processes are right but they need money to make them happen, there is a new £18 million fund coming in, from next year, a transition support programme, this has to build on existing resources like the transition information network, which is the key hub of information for transition issues. And then things like the new youth strategy - the government's programme on youth matters - must deliver for disabled young people as well, we want to see real evidence that disabled young people are involved in deciding how that money is going to be spent.

WHITE
Steve Broach of the campaign group Every Disabled Child Matters, thank you very much indeed. We have asked ministers to explain what they're doing to improve the experience of transition care for disabled children and their families. Ivan Lewis, care services minister, told this programme: This government is committed to improving the transition of young people to adult services. The Aiming High for Disabled Children report published in May this year, which I think Steve was referring to there, includes proposals to develop a support programme which is underpinned by £19 million of investment. The first ministerial group of stakeholders who will advise ministers on the implementation of that report's recommendations met in July to consider the plan and he says we're now working on the details.

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