Individual budgets could transform young disabled people's transition to adults' services, but if only if they are implemented with proper support. Corin Williams reports
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The personalisation of social care offers disabled young people more independence, but it could also create more anxiety and confusion.
The central tenets of the personalisation revolution - person-centred planning, individual budgets and direct payments - are being slowly rolled out for all care groups, including for those making the transition from children's to adults' services. But the idea of having to cope with employing a personal assistant or looking around for the best deal at an already stressful time in their lives could be overwhelming for some disabled young people and their families.
And it's not just a difficult mind-shift for clients - services involved in transition are also facing a wholesale culture change and managers are having to think more flexibly.
Although it's early days for personalisation within transition, the ball has started to roll. Through a key government strategy, Aiming High for Disabled Children, four pilot areas have recently been set up to look at how individual budgets can be used by young people in transition.
Coventry Council's children's services manager Ray Evans was told a month ago that his authority was one of the successful candidates. The Department for Children, Schools and Families will give Coventry £236,000 to run the two-year pilot, which will involve 30 young people from the age of 15. Although many say that individual budgets could radically improve disabled young people's lives, Evans is cautious.
"I don't know what we're going to find," he says. "We're going to do our best to make it successful, but at the end we may not decide to pursue that model because it could be so expensive in terms of staff time."
Coventry was chosen for the pilots because it has experience in running a similar pilot project for older people and had already developed a cost calculator for children's services with Loughborough University. Given this expertise, what difficulties does Evans expect?
"The real challenge is identifying what funding streams will be part of the individual budgets, because a large number of schemes that are running don't appear to be taking anything further than direct payments," he says.
Spreading the budget load
While including monies from services already within his power will be straightforward, such as home support or short breaks, Evans wants to see budgets pulled in from education, health and other departments where it may not be easy to overcome the barriers to joint working.
"One of the budget streams we will probably include is transport, that's a real win-win. It's better for parents to have that budget so they can just phone up for taxis and organise it themselves. It costs several times more for us do it."
The DCSF pilots do not represent the first foray into this area. Personalisation specialist In Control started its Dynamite project in October 2007 to test self-directed support for young people. The Council for Disabled Children is also leading the work on the government's Transition Support Programme, and programme director Helen Wheatley has been keeping tabs on how effective individual budgets have been.
"Unless you give families the tools and prepare them properly and make sure you have an infrastructure in place to support the individual budget, it's like giving somebody a Porsche and not checking whether they've got a driving licence first," she says.
Like Evans, Wheatley thinks that bringing together budgets from health and social care is "fraught with difficulty" because of statutory limitations and culture clash between organisations. Moving away from block-contracting services is also proving problematic for some local authorities, she says. "We've seen it with day care adult services recently. That works very well to a degree, but then you start hitting things like joint budgets on buildings," she adds. "If you transpose that into children's services then the funding streams are at least doubly complex to those in adult social care."
Wheatley knows from experience with direct payments that disabled young people and their families don't necessarily want the responsibility for recruiting and employing their own staff and looking after Criminal Records Bureau checks plus paperwork.
"We all need to learn, no one's got it entirely right," she says. "Commissioners need the right skills. We also need to look at eligibility criteria for children's services to see who's going to get access to this, then look at the impact on funding."
The Foundation for People with Learning Disabilities has been looking not just at individual budgets, but at an entire person-centred approach for young people with autism emerging into adult life through its We Can Dream project. Research programme manager Jill Davies says that families often find it difficult to take the plunge: "For some people it's quite frightening. We had originally worked with one or two families at the start of the project who pulled out because they wanted to go down the residential college route," she says. "It is a daunting prospect, you're having to cope with the son or daughter leaving a very structured environment. Others wanted to try something a bit more creative."
New sense of freedom
Davies advocates encouraging parents to use individual budgets early on for things like short breaks in order to get them used to the new sense of freedom that person-centred planning can bring. "It really helps to reduce the anxiety if you have been using that kind of thing already."
In contrast to the wariness shown by some, Pippa Murray, head of training and research consultancy IBK Initiatives, is fully persuaded of the benefits. The organisation is helping to set up students with a range of complex learning skills on individual budgets at the Talbot Specialist School in Sheffield. Six young people were helped last year and 16 more will be taken on this year. The feedback so far has been 100% positive.
"The outcomes have been unbelievable," says Murray, whose own son died as a result of his impairments in 1998 at the age of 15. "Some of the families thought that there would be nothing for their sons and daughters to do, that they'd be sat at home in front of the telly and they're now saying that life has never been so good."
Murray sees working with families as more straightforward than working with agencies. In Sheffield, and similar schemes in Hull and Kirklees, she found it was possible to get families up and running with individual budgets in just four hours over two workshops.
"If you look at the blood, sweat and tears to bring the different agencies together and getting the assessments done in time, that's very hard, time-consuming work," she says. "It's particularly hard dealing with our bureaucratic systems and the different agencies involved in transition - children's and adult services, health, housing, education - they all have different agendas."
The strongest message, as Murray sees it, is for one agency to drive the process as much as possible, preferably within education. "The school knows the kids and the kids know the school," she says. "One of the big lessons from the Talbot experience is that this is something that special schools can and should be doing."
How individual budgets can help transition
Pippa Murray explains just how individual budgets can ease transition:
"The parents of one young man thought he would be dependent on them forever. In the first few months of having an individual budget their son has gone to different places with his friends and has gone on holiday. For the first time they are thinking that he might like to live independently. They're now looking at him moving out of the home. Other families have told me that he's grown up so much in the last few months.
"Parents had no idea of this world. They are running with it as soon as they see what it can provide."
WANT TO LEARN MORE?
The Council for Disabled Children's Helen Wheatley will be among experts speaking at Community Care's conference on Achieving Successful Transitions for Young Service Users in London on 8 July.
To book your place, telephone 020 7347 3574 or go to http://www.conferencesandtraining.com/transitions