Effective systems to support people with learning disabilities
Why is there a mismatch between policy expectations, the evidence base of what works, and the real experiences of adults with learning disabilities?
I was recently being interviewed for a film about the lives of people with learning disabilities and the interviewer asked: 'how have recent changes to health and social care policy affected people with learning disabilities and learning disability services?'
The more I thought about it, the answer became clear that recent policy changes themselves have had little or no impact – it is more the way that policies have been implemented.
Learning disability policy, a policy that still has very explicit support from people with learning disabilities and families, has been consistent for over 15 years. The 2001 White Paper Valuing People with its focus on rights, independent living, control and inclusion is still policy. It was clarified and built upon in Valuing People Now in 2007. There have been no recent specific learning disability policies other than the NHS England Transforming Care responses to the Winterbourne View abuse - which essentially re-stated the Mansell report elements of Valuing People.
In more general terms, personalisation and then the Care Act 2014 provide the local authority framework within which learning disability policy is to be delivered. However, these in themselves are reflections of Valuing People. Personalisation was very much driven out of the learning disability sector’s emphasis on person-centered practice and giving people control over their services and support. The Care Act 2014 placed wellbeing as social care’s desired outcome, and explicitly stresses elements of key learning disability policy including paid work, housing and community relationships. General policy then builds on, rather than replaces or contradicts learning disability policy.
The question therefore must be why the evidence about the paucity of people’s lives (described in the Strategic Briefing) is at odds with the policy expectations around rights, choice, control and inclusion. This cannot just be explained by the current financial challenges facing social care – as it pre-dates that.
When writing the briefing, what was highlighted to me was the extent in which this mismatch is being significantly caused by a failure by many local authorities to implement and follow the evidence base. Anecdotally, this problem is now being exacerbated by financial cutbacks, with decisions being taken to save money by moving still further away from the evidence into service models that not only lack evidence, but are likely to prove more costly in the medium term.
Take employment and paid work for example. Some of the most robust research around learning disabilities has shown that the approach called ‘supported employment’ has the best success rates and is the most cost effective way of supporting people into paid work. Yet studies also show that around two-thirds of local authority spending on employment support is on other models, where there is little or no evidence that they will result in people getting into employment. The evidence is also clear that it costs local authorities around £8,000 less to support a person into paid employment than to provide alternative support, like day services, that will be necessary instead. However, with current cutbacks, some local authority supported employment services are closing down. Similar points can be made about moves by some local authorities to move back to larger, congregate residential care settings, when there is no evidence that they are more cost-effective.
Decisions like this are hard to understand when the evidence is clear about their likely impact. It has never been more important for evidence to be used to support decision-making, given that resources are becoming scarcer. In some aspects this is a problem for learning disability services, because of the very limited investment in learning disability research over the last 20 years or so means there are substantial gaps in the evidence base. Whether that is around housing and support models, advocacy or families, there are significant things we do not know.
However, there are areas such as general health, parenting and support to people who challenge, where that evidence base is good and needs to be followed. Where it is weak, or missing, the challenge for decision makers in social care is not to allow financial pressures to override moral and legal expectations, and the rights of people with learning disabilities to live as equal citizens, with the same life chances as others.
About the author
Rob Greig is Chief Executive at the National Development Team for Inclusion (NDTi) and previously the Government National Director for Learning Disabilities (2001-2008).