Transforming learning disability care means valuing all citizens

A new national plan to improve learning disability services is right, but we’ve heard it all before – it’s time for real change and it won’t be cheap

The publication of a national plan to transform learning disability services, and particularly for people with a learning disability and/or autism whose behaviour challenges, is welcome, overdue and ambitious.

The background to the latest plan is familiar, particularly with the scandal of Winterbourne View uncovered by BBC’s Panorama in 2011, which highlighted both individual abuse and neglect, and raised awareness of the much wider issue of long-term hospitalisation. But the need to commission appropriate services has long been recognised, and is a particular concern for young people with learning disabilities and complex needs when transitioning to adult services. This is when out-of-area placements often occur due to a lack of alternative local provision.

The principles of the national service model should command widespread support. These are value-based and reflect a concern with basic citizenship rights, as the foreword states:

Children, young people and adults with a learning disability and/or autism have the right to the same opportunities as anyone else to live satisfying and valued lives, and to be treated with dignity and respect. They should have a home within their community, be able to develop and maintain relationships, and get the support they need to live healthy, safe and rewarding lives.

The development of new local service models is expected to lead to the closure of 35-50% of the remaining 2,600 inpatient beds within three years. Fast track service developments have been going ahead in six areas of the country, and 49 transforming care partnerships will bring about systemic change and develop innovative housing, care and support solutions in the community.

The national plan carries the badges of the Local Government Association and the Association of Directors of Adult Social Services as well as that of NHS England, and this shared commitment will be vital in both symbolic and practical terms. Nonetheless, charities have been quick to raise concerns about the adequacy of funding to support the transformation, particularly at a time of intensifying financial pressure on local councils.

Some progress has been made, compared with earlier decades, the vast majority of people with learning disabilities do not live in hospitals. But too many still do and a hospital is not a home. We’ve failed to meet the care needs for this group of people for so long because it’s very difficult to make the changes needed to get it right.

We’ve known what the problem is for a long time – at least the last two decades. The influence of the late Jim Mansell in developing earlier guidance was significant, and as he cautioned in 2007:

Developing good local services will not be cheaper, overall, than institutional care, but it will be more efficient because it will achieve more. If local services are not developed, then a trickle of out-of-area placements will become a rush as more people are excluded from mainstream community services by being defined as unmanageable in the community. Large amounts of money will be tied up in buying less good services. The policy of community care will be said to have failed.

Arguably this accurately sums up the current situation and indicates what needs to change. However, as the new national plan acknowledges, the needs of people with a learning disability and/or autism who display behaviour that challenges are diverse:

Some will have a mental health problems which may result in them displaying behaviour that challenges. Some, often with severe learning disabilities, will display self-injurious or aggressive behaviour unrelated to any mental health condition. Some will display behaviour which can lead to contact with the criminal justice system. Some will have been in hospital for many years, not having been discharged when NHS campuses or long-stay hospitals were closed. The new services and support we put in place to support them in the community will need to reflect that diversity.

The new national plan presents a coherent vision, an alliance of organisations committed to change, a new financial framework and plans for monitoring progress on delivery. There is an opportunity – finally – to resolve the long-standing and intransigent issues around provision for a small but highly marginalised group of the population. The plan concludes with the clarion call:

“Together we have an opportunity to transform thousands of lives. Together we must seize the day and deliver.”

If the vision is to be realised, this is about much more than a numbers game; it is a challenge which goes beyond services and into the daily lives of us all and will require a fundamental cultural change that truly does value all citizens.


Melanie Henwood

The GuardianTramp

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