Lost in transition

Transition for young people with learning difficulties has had a
high priority at policy and practice levels in recent years. At a
policy level, the learning difficulties white paper Valuing
People prioritised good links between child and adult services
as part of the social care quality framework, while the requirement
for transition planning (established in the Education Act 1993) was
strengthened under the revised code issued in 2001.(1)

Young people with learning difficulties are also a priority group
for person-centred and health action planning. At a local level,
many organisations and authorities have been striving to develop
systems to smooth the process of moving from children to adult
services, yet research has shown widespread confusion about the
transition process.(2) Lack of information has been identified as a
key problem for young people, their families and professionals
alike.

Last November, the Social Care Institute for Excellence launched
the outputs from a review of the information needed by young people
with learning difficulties, their families and supporters at
transition. The Road Ahead? review was undertaken by the
Norah Fry Research Centre, University of Bristol, with young people
with learning difficulties from North Somerset People First and the
Home Farm Trust, a national service provider.

The review had three parts: a study of the relevant literature; an
evaluation of the content of resource materials (such as
information packs) that have been developed to support young people
and their families during transition; and focus groups with young
people, families and supporters to find out their information
needs.

Young people with learning difficulties from North Somerset People
First played a central role in carrying out the review. They were
given research training and supported to investigate what
information young people with learning difficulties needed to know
while they were growing up through discussions and activities with
four groups of their peers in England and Wales. Their parents and
supporters also took part in parallel focus groups, led by a
parent/carer and a supporter/manager, to find out what information
they needed.

The review found that young people with learning difficulties have
the same aspirations as other young people. They wanted to do what
they saw their siblings doing and did not think their choices would
be any different just because they had learning difficulties. The
young people wanted to have a partner, a job and to have their own
place eventually. To make these choices, they needed information
which would support them to be in charge of all aspects of their
life, from what to eat or what to watch on television, to where to
live and how to speak up for themselves.

Their parents recognised and confirmed their children’s desires and
aspirations. They wanted the best for their child, but were
concerned whether good support would be available. The young people
themselves had not mentioned needing or using services, but their
parents were worried that services would be inadequate. Many
parents spoke of already having had to fight for services and of
not knowing which ones were available for young people in their
area.

Families need help to negotiate their way through the challenges
and changes which occur during transition. These include empowering
young people so that they can take on their adult rights and
responsibilities and become increasingly independent and take
opportunities (as well as risks).

The changes often have a huge impact on the family as a whole. One
of these can occur when a young person moves out and becomes
responsible for their own finances, including their benefits, which
had previously been part of the general household budget.

To be helpful to families, supporters need a variety of information
themselves. They need detailed information about the young person,
their family support and their emotional support needs, as well as
services in the area and local policies and practices. Supporters
emphasised the importance of person-centred planning to ensure that
young people’s dreams, as well as their needs, were at the centre
of the planning process. They wanted to help young people work
towards their dreams within the context of what was available
locally.

Overall, the review found that young people, parents and supporters
need detailed information about the transition process, which
responds to their particular perspective. They need to know:

• What transition is, who is involved and the different roles
  they have to play – whether as young person, parent, supporter,
  social worker, teacher or Connexions personal adviser.
• What rights, entitlements and procedures exist at a national
  level. This includes information on changes in funding and benefits
  and explanation of terms such as supported living, direct payments
  and health action plans.
• How the transition process works locally.
• How person-centred choices can be accessed locally.
• What services are available locally (including contact details)
  and what options might be developed through different
  agencies.
• What support is available to young people and families
  throughout the transition process and into adult life. Are there
  specific transition workers or key workers?

Our review of transition resources showed that there are a
number of general packs which cover many of these areas. The
All Change pack most closely addresses the topics shown in
the panel above.(3)

However, there did not appear to be any resources focusing on
handling money for young people at transition. There was also no
specific information on sex and relationships, although young
people themselves were clear they wanted information on this topic.
There was also little information to support young people to be in
charge of their lives or guide them on daily living (such as how to
pay their household bills) and healthy living.

Finally, none of the resources responded to the emotional aspects
of transition, particularly how to deal with disappointment or
frustration, when young people’s dreams could not be turned into
reality.

The information provided for young people, parents and supporters
needs to vary in format to meet the needs of each different
group.

Beth Tarleton is a research fellow at the Norah Fry
Research Centre, University of Bristol. She specialises in applied
research on services for disabled children and adults with learning
difficulties. She is particularly interested in self-advocate
researchers to do their own research.

Training and learning
The author has provided questions about this article to guide
discussion in teams. These can be viewed at www.communitycare.co.uk/prtl
and individuals’ learning from the discussion can be registered on
a free, password-protected training log held on the site. This is a
service from Community Care for all GSCC-registered
professionals.

Abstract
This article looks at the key findings from The Road
Ahead? review of transition for young people with learning
difficulties. It shows that transition is a confusing and stressful
time for them. Young people, their parents and supporters all need
clear information about the transition process itself, as well as
information regarding the choices and changes.

References
1 Department for Education and Skills, Special
Educational Needs: Code of Practice, DfES, 2001
2 P Heslop, R Mallet, K Simons and L Ward, Bridging the Divide at
Transition: What Happens for Young People with Learning
Difficulties and their Families? British Institute of Learning
Disabilities, 2002
3 R Mallet, M Power, and P Heslop, All Change – Transition into
Adult Life. A Resource for Young People with Learning Difficulties,
Family Carers and Professionals, Pavilion, 2003. Available from
01273 623 222 or www.pavpub.com 

Further information
The six outputs from The Road Ahead? review can be downloaded from
www.scie.org.uk/tra. An
executive summary of the project can also be read on this site –
see www.scie.org.uk/publications/tra/summary.asp.

Contact the author
Beth.Tarleton@bris.ac.uk

Please tell me…
Young people, parents and supporters wanted specific information on
the following areas:

• Work.
• Going to college.
• Where to live. 
• Money (including handling money and the impact on benefits of
  getting a job or moving out of home).
• Friends.
• Sex and relationships.
• Safety.
• Being in charge of your life.
• Rights and responsibilities, including helping others, playing
  an active role in the community, and the law.
• Living independently.
• Healthy living.
• Emotional changes.
• Having fun.
• Changes in services.