‘Nightmare’ Of Turning 18 For Teenagers With Disabilities, Say Families

For many young people with disabilities and serious medical conditions, turning 18 can be the start of what some families describe as a ‘nightmare’ as they make the move from children’s to adults’ social services, a new report states.

They can experience problems because local councils do not all provide the same level of support for adults as they do for children.  This means they may lose their independence and opportunities for a fuller life.

Dame Denise Platt, Chair of the Commission for Social Care Inspection, which has published the report, said: “Our study shows that councils need to start planning early to ensure that young people with disabilities have the chance to lead as independent a life as possible once they reach adulthood.

“Young people should expect to maintain their quality of life as they move into adults’ services. It is a waste of resources – as well as a waste of young people’s potential – if the support they are given as children is not continued into adulthood, and if they end up in expensive residential care that restricts their independence, often many miles away from their own home.”

Urgent action is needed to tackle this issue, says the report, and the new arrangements for children’s and adults’ social care services present an opportunity to get it right. The report calls for councils and primary care trusts to take a fresh look at the issue and to work together to develop and commission seamless services that offer choice and independence to people with complex needs as they go from childhood to adulthood.

The CSCI report, Growing up matters: better transition planning for young people with complex needs, is about young people with combinations of acute and chronic medical conditions, multiple and profound impairments, behavioural problems and learning difficulties. In particular it looks at the views and experiences of those who have been placed in residential care outside their home area.

It includes the views of families and carers, residential schools, and social services and their partners in education and health.

The report says that improvements have already taken place in some areas of the country. But generally there is inadequate commissioning of services, poor co-ordination and a failure to properly plan ahead with young people and their families.

This results in delays, multiple assessments, confusion and anxiety for all concerned. Many councils say the level of services is reduced as young people reach adulthood. Factors that contribute to this include different eligibility criteria for access to services and different levels of funding.

CSCI will continue to focus on the performance of councils in carrying out their statutory responsibilities for this group of people, and will report on progress.