Change that leads to better lives

The importance of prevention in the Learning Disabilities service model

The consultation on the draft service model, 'Supporting people with a learning disability and / or autism who have a mental health condition or display behaviour that challenges' (what a mouthful) is now over, and we will wait to see what emerges.

I remain concerned about the narrow focus of the service model on people at risk of being admitted to in-patient services, as it risks being detrimental to the wider population of people with learning disabilities. People who challenge services often do so because services are poor or inadequate after all. So this model really needs to be part of a wider strategy for learning disabilities that has been missing since the loss of Valuing People. To take one example, the model talks about the importance of statutory and non-statutory advocacy for this group. We know that advocacy is being cut in many localities, and cash-strapped commissioners may decide to focus resources on this small minority, not only depriving the wider population of people with learning disabilities (and people with autism) with much needed support, but storing up problems for the future.

The scope of this model, which includes people with autism (and Asperger’s syndrome), who do not also have a learning disability is also worrying. This is a very broad group of people, with a very wide range of issues, who are often not supported by the same services.

There is some useful detail in the model, and practical suggestions that could help all people with learning disabilities/autism. But there needs to be much more emphasis on listening to people using services and their families, and working collaboratively with them to co-produce services. This was raised repeatedly in our work with families and people with learning disabilities who have experience of in-patient services.

There needs to be more emphasis on services working together and sharing risks. This is implicit within some parts of the model but is not spelled out. Families gave numerous examples of services not working together, and said there should be joint commissioning and ownership. Our best practice commissioning guidance, which draws on experience from places that have improved services, is based on the Mansell report principles. We have developed an audit based on this work.

Although the draft service model is about children and adults, there is no reference to how services need to take a ‘life course’ approach to planning. There is little indication about how children’s services and education should work together with adult services to prepare children and young people for adulthood. Some of these issues are covered in the overarching principles, but there needs to be a much stronger focus on them.

The Challenging Behaviour Foundation early intervention project has developed some excellent guidance for services. Our Preparing for Adulthood Programme also has practical resources.

Mental health services remain inaccessible for many people with learning disabilities and/or autism. The Foundation for People with Learning Disabilities is doing some excellent work on accessible IAPT services. NDTI’s Green Light Toolkit 2013 is designed to enable services to review their own quality, share and replicate good practice.

Finally, we also need to have more focus on outcomes and how to measure these. The Health Equality Framework (HEF), can really help services think about and act on reducing the health inequalities people with learning disabilities experience. This takes me back to my first point. Unless we are working to improve things for all people with learning disabilities, and prevent problems arising in the first place, I fear the model will at best be only partially successful.

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