Count Us In

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In 2001, the Foundation for People with Learning Disabilities undertook an inquiry to find out how services, families and carers can meet the mental health needs of people with learning disabilities aged 13 to 25.

The inquiry committee was led by Professor Barry Carpenter and Dr Mary Lindsey. It was advised by young people from Generate, a London based voluntary organisation for people with moderate learning disabilities. They ensured that the voices of young people with learning disabilities were heard.

The committee considered oral and written evidence from across the UK.

The evidence included:

  • feedback from focus groups
  • completed forms from young people with learning disabilities and professionals
  • presentations by family carers, professionals and researchers
  • reports of visits by committee members
  • family stories
  • commissioned papers
  • contributions from an online conferencce.

Key findings

  • Young people with learning disabilities are more likely to develop mental health problems compared with those without a learning disability.
  • 40% of young people with a learning disability will experience such problems compared with 10% of young people without a learning disability.

The range of mental health problems experienced in young people with learning disabilities is similar to the general population but these young people are more inclined to develop emotional difficulties such as depression and anxiety which can have a significant impact on relationships and negotiating the transition to adulthood.

Getting professionals to recognise mental health problems was not always easy, often young people or their carers were told it was related to their learning disability and no further referrals were made to specialists.

The GP is often the first port of call yet mild conditions are not always recognised and treated and GPs are not always referring those with more serious conditions for medical help.  

The Inquiry heard from many sources that services are often not available, inappropriate, there are long time delays before receiving assessment and often young people are shunted between mainstream and specialist services.  

It can be particularly difficult for those aged between 16 to 18 years as this group fall between child and adult services and it is unclear if they to be seen by the local mental health or learning disability services.  This often results in them not being seen by any service, this is a particular issue for young people with moderate and mild learning disabilities.

As a result of this inquiry, we produced a report and two booklets which provide information about the mental health and emotional wellbeing of young people with learning disabilities.

Following this inquiry we also completed another project about young people with learning disabilities and mental health called Making Us Count.