Falling through the gap not an option

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