On leaving school, many young people with learning disabilities end on a path to a lifetime of services that fail to meet their needs and wishes fully. Simon Duffy describes how a new path can be forged
Transition is code for system failure. At the end of school, while their peers party, play and plan for the future, young people with disabilities are sucked into a dangerous vacuum.
The result is often family breakdown and expensive institutional care – with young people moving into residential care, colleges, assessment and treatment units or private hospitals.
I gained a sense of how this happens when I became a governor at a local special school. Teachers did not support children to take on a life of citizenship, because they did not anticipate young people making progress in their adult life.
Adult services responded by despatching an array of planners into the school system.
Meanwhile, families were never told what they were entitled to, nor how they could organise any support they needed.
A new way of transition
After a year of interviews with families, professionals and teachers, the school designed a new transition system, and managed to get the system to change some of its behaviour.
Families were told what their budget would be early on – at least by the start of the final year. Budgets could include funding from the NHS, social services or adult education. Young people had lesson time to work on their own plans, and families did not have to develop multiple plans for different professionals. The authority of the family was respected and support for families was organised with the school acting as a base for family learning.
Families no longer had to seek the most expensive support solution – often a residential college, hundreds of miles away – as a kind of rational negotiation strategy. Instead, empowered with a meaningful budget, families could develop realistic plans and organise sensible local support solutions which invested in both their child and their local community.
Another positive outcome was that the school began to change – not because people were told to, but because teachers began to see their work now had real meaning. The emphasis on employment increased and the curriculum was organised around the Keys to Citizenship (Duffy, 2006).
Much of the success of this work was based on the inspirational work of Pippa Murray, a fellow of the Centre for Welfare Reform (2010). Instead of lecturing parents about what they should do, Murray helped parents discuss their problems and identify solutions together.
Peer support is critical for establishing faith in the possibility of positive change. Parents learn from each other and see the benefits of taking risks and trying new things.
This same thinking is found in the Now and Next programme, based in Australia (Mahmic and Janson, 2018). This system of peer support starts at birth. It helps families confront the negative stereotypes of disability fostered by the medical system. Instead, families help each other to develop meaningful positive plans and forge positive relationships with professionals.
Care and conflict
A root cause of the transition crisis is the failure to respect the moral authority of families. Professionals can create a vicious cycle: parents are seen as too controlling, the professional proposes what they think is an empowering solution, the parent becomes defensive, nothing is achieved and the professional moves on.
Unless we start by respecting families, we are building on sand. The plans of enlightened professionals will come to nothing if they conflict with the power of love.
The basis of transition – growing and changing – belongs to the person and their family. It is not a system issue and, once we steal authority over their own lives from people, we create a problem with no solution.
Simon Duffy is director of the Centre for Welfare Reform and secretary to the international cooperative the Citizen Network
Duffy S (2006) Keys to Citizenship: a Guide to Getting Good Support for People With Learning Disabilities. 2nd revised edn. Sheffield: Centre for Welfare Reform
Murray P (2010) A Fair Start. Sheffield: Centre for Welfare Reform
Mahmic S, Janson A (2018) Now and Next: an Innovative Leadership Pipeline for Families with Young People With Disability or Delay. Sheffield: Centre for Welfare Reform.
Cowen A (2010) Personalised Transition – Innovations in Health, Education and Support. Sheffield: Centre for Welfare Reform