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For all of us, the transition from childhood to adulthood is doused with dilemma, confusion and fear. It’s the critical time to plan your life. If you rely on services it’s possibly an even more difficult time. Social care services have yet to crack a timetable for smooth passage from children’s to adults’ services.

The Standing Conference of Voluntary Organisations for People with a Learning Disability in Wales (Scovo), following a series of conferences between 1998 and 2000, identified the yawning gap in services for people with profound and complex learning difficulties making the transition from school to adult life.

"There was a big gap that needed exploring," says Life Options project leader Mark Williams. "Mainly the multi-agency bit wasn’t working very well, nor were the links between adult and children’s social services and education. There were also concerns that the young people themselves weren’t involved as well as they could be."

It was decided to drag heads out of the sand and face up to the problem. Scovo, essentially a representative organisation, took the brave decision to directly manage a project itself.

Life Options was born in February 2001 with the appointment of Williams. Kelly Gammon, the communications officer, joined in August. Working with up to 20 young people aged between 13 and 19 years, the project aims to show that young people can be supported creatively to explore a range of life options for the future. Based in Llanelli, the project covers referrals from Carmarthenshire, South Powys and Swansea - to include urban and rural areas.

The emphasis on sharing good practice is marked. This will mean producing a case study pack - a good practice guide on transition. "When the project ends, we want to leave behind something that says, ‘This is a good way to do it’, and which in an ideal world each local or education authority might use to help people through the process," says Williams.

The case load of the project is limited to ensure that comprehensiveness and quality go hand-in-hand. "We start by getting to know each person really well," explains Williams. "It might sound common sense, but we spend time with people and build up a portfolio of who each person is. While this helps us to get to know them - and them us - what we are also working on is a way to help young people represent themselves in the future."

Williams prefers the personal portfolio approach. "But we try to get away from the traditional hardback portfolio of evidence and look to find a personalised way of doing that."

One example concerned a young man who used to carry around newspapers and magazines. So for his portfolio, up came the idea of creating a newspaper about himself. Complete with articles and photographs, it tells the story of who he is, where he came from and what his interests are. "He watched television a lot, so there is a TV guide of his favourite programmes. There’s even a crossword which is all about him. However, the trick is to make things personal. A newspaper might work for this guy but not for everyone," adds Williams.

Trystan James is 15 and has the genetic disorder tuberous sclerosis. The effects of this can vary greatly from person to person. It derives its name from the tuber-like growths on the brain which calcify with age and become hard or sclerotic. Trystan’s heart and kidneys are affected by it. His brain tumours cause epilepsy, autism and challenging behaviour. Trystan’s first language is Welsh, and this causes even more difficulties in fitting in with existing services.

"We had been living day to day really, and not planning for the future; too busy sorting out today’s problems to look forward," says Marie James, Trystan’s mother. "His transition planning review was quite painful in a way because it opened up a world of services and assessment processes that were quite unfamiliar to us. It was hard realising that this was the beginning of the letting-go process. All the information was confusing - but I was lucky enough to hear about this project."

And now Trystan’s with the project? "Now that we’re here," says James, "it’s really opened our eyes to the possibilities and choices that Trystan can have. The information has been made a lot clearer to us. We’re obviously aware that things are not going to happen overnight, but I can see positive steps for Trystan and a future for him based around his needs.

"We feel very privileged and grateful that Trystan is on this project," she continues. "All along, Trystan has been sort of slotted into things. But this project gives us the chance of actually looking at him as an individual - his strengths, his uniqueness - and building provision around that."

"Uniqueness" is an everyday word at the project. It’s not a fancy word rolled out to push the right buttons, but is applied in a healthy, practical way. For Trystan’s portfolio they’re helping him make a read-along-about-me booklet, in the Disney-style he so loves, complete with story cassette.

"We thought about who could read his story," says Williams. "Trystan told us he liked Barry Welsh - a character creation of comedian John Sparks. So, I said ‘why not see if he’ll do a tape for us?’ We got in touch, and he said he was happy to do it. We look to find out what kind of vehicle is going to work for the individual: something that’s practical, engaging and unique to that person."

All the individual work carried out revolves around nine life themes:

• Having a voice.
• Control of your own money and resources.
• Having good health support.
• Getting around.
• Friends and support.
• Learning opportunities.
• Having fun.
• Daytime opportunities and work.
• Having a break.
• Housing choices.

To develop these themes, and to try and get a sense of what a good life might look like for that young person in the future, the project makes use of person-centred planning tools. "To do this effectively you have to mix and match them to suit each individual," says Williams. "We use them to help people represent themselves to say what they want out of life and to use at planning meetings with professionals. We’ll say: ‘This person has already done some thinking about their future - what can you do about it?’ It helps to give a focus to transition. And it helps open people’s eyes to different ways that they can involve that person."

Given its own uniqueness, the project has taken on an advocacy and developmental role by trying to help some people pursue identified ambitions. For example, Williams has been working on Gemma Cotterell’s wish to go to college with her friends rather than having to go to a special residential college, an option typically suggested by careers advisers to people with complex needs. But the college said they couldn’t support someone with Gemma’s needs. "So we got involved," says Williams. "We tried to get them to look at why they couldn’t do that. And what’s emerged is a big project to make the college more inclusive. And she’s been offered a place for next year."

"The project’s been very helpful, very useful," agrees Lynda Cotterell, Gemma’s mother. However, there is concern that, although she will attend the college, Gemma will be taught separately. Williams is convinced, however, that he can sway the college on this.

Again, this highlights the essence of the Life Options project. It’s not "what’s available" that drives them but "what’s possible". And that’s a journey everyone deserves.

Background

Scheme: Life Options Project.

Location: Llanelli, South Wales.

Inspiration: The need to address transition from school to adult life for young people with profound and complex learning difficulties.

Cost: £195,476 - three-year funding from Diana Princess of Wales Memorial Fund.

Resources: Information pack available. Call Mark Williams or Kelly Gammon on (01554) 746 782 or e-mail: lifeoptions@scovo.org.uk