Information needs of young people with learning disabilities

Young people with learning disabilities have similar expectations to their non-disabled peers when they think about their future. As they become adults, they expect to go to work or college, have a social life, continue their hobbies and have relationships. They also recognise that growing up involves emotional changes as well as making choices about how they will live their lives.

The transition from children’s to adults’ services requires careful person-centred planning to ensure a consistency in service that takes into account the practical, social and emotional changes in the young person’s life. Clear information about what transition is and means is central to this.

RESEARCH INTO INFORMATION NEEDS

Research shows that young people want very practical information and support that will help them to be in control of their own lives and live independently. They also want to know about music, sport, hobbies and socialising.

Research carried out into the information needs of parents and supporters of young people with learning disabilities found that  parents recognise that transition is about young person growing towards adulthood and adult responsibility, but they are also concerned about their ability to take on the responsibilities of adult life and how they will be treated by the wider public.

Parents often lack understanding of the transition process; they don’t always realise that it refers to all aspects of a young person’s life, not just the move from school to college. They are, however, aware that they might have to fight to get the young  person the support they need. Parents feel that they need information to answer all their concerns and about all available support for their children.

Supporters recognise that transition is a very emotional process for young people. It is a time of confusion, fear, challenge and excitement during which emotional and practical support is vital. They need good information about the transition process locally, the choices, services and supports available, and how they could best contribute to the young person’s planning process.

Information is needed on these areas for young people, parents and supporters:

● Work.
● Going to college.
● Where to live.
● Money (including handling of money and the impact on benefits of getting a job or moving from 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 and people with learning disabilities).
● Living independently.
● Healthy living.
● Emotional changes.
● Having fun.

Research also shows that information providers need to be aware of the confusion currently experienced by families about the transition process, the way it is implemented locally and the nature of the different plans made by different agencies.

As well as clear information, families need a key contact who is independent of services to help them through the process.

Transition is a stressful time for young people. They are often not involved appropriately in their own transition planning
process and their aspirations may not be met. The evidence suggests that few young people with learning disabilities have
jobs and many use day centres. A holistic approach to person-centred planning is essential to ensure that young people’s
aspirations are supported and championed, while being sensitive to the realities of what is available locally in terms of services and support.

PRACTITIONERS’ MESSAGES
Young people, parents and supporters 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: its structure and process.
● What services are available locally and what options might be developed for the individual through different agencies. This information should be up to date and include relevant contact details.
● What support is available to young people and families throughout the transition process and into adult life. Are there specific transition workers or keyworkers locally?

Information also needs to be provided to support young people, parents and supporters to understand, and work through, a range of other issues arising at transition. These include:

● The impact of changes on family relationships.
● Adult rights and responsibilities.
● Empowerment and self advocacy.
● Increasing independence, including taking opportunities, safety and risk-taking.

Information needs to be presented in a practical manner, using activities to enable young people to think through the implications of their choices and changes in the context of their own personal and emotional lives.

FURTHER INFORMATION
● Social Care Institute for Excellence (Scie) – The Road Ahead
● Scie – Community-based day activities and support for people with learning disabilities
● Transition Information Network
● Foundation for People with Learning Disabilities
● National Institute of Adult Continuing Education (Niace)

This article appeared in the 2 August issue under the headline “Information needs of young people during transition”