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.

Contributor

Melanie Henwood

The GuardianTramp

Related Content

Article image
Families of people with learning disabilities fear for the future
Stopping inappropriate hospital care is long overdue, but families say community resources are already stretched to breaking point

Diane French

12, Nov, 2015 @8:39 AM

Article image
'Homes not hospitals': learning disability care to move to community
New plans will see the closure of the last NHS hospital for people with learning disabilities in England. We round up responses from the social care sector

Ruth Hardy

30, Oct, 2015 @11:10 AM

Article image
Proposed new rights for people with learning disabilities – a quick guide
Care minister Norman Lamb has unveiled green paper to give people more rights

Ruth Hardy

09, Mar, 2015 @10:42 AM

Article image
Winterbourne View: when values take a back seat in social care
We must encourage a culture where people are confident to report their concerns, says Steve Scown

Steve Scown

12, Dec, 2012 @8:30 AM

Article image
Social care green paper must address the needs of all, not just older people | Alison Rose-Quirie
As funding debates are dominated by elder care, there are others whose needs are ignored while the services they depend on are starved of cash

Alison Rose-Quirie

22, May, 2017 @8:37 AM

Article image
Learning disability: positive behaviour support offers an alternative to antipsychotics
Challenging behaviours can be traumatic, but sedation is not the answer. Positive behaviour support can help people express themselves in different ways

Jonathan Beebee

21, Jul, 2015 @7:30 AM

Article image
People with disabilities have the right to good health too | Fiona Ritchie
Year-long campaign will focus on disability and health inequalities, challenging providers to improve services

Fiona Ritchie

27, Nov, 2017 @9:14 AM

Article image
A quick guide to new care minister Alistair Burt
The post-election reshuffle sees Lib Dem Norman Lamb replaced by a former foreign minister

Ruth Hardy

12, May, 2015 @11:49 AM

Article image
One in 10 jobs in learning disability services at risk – report
Lack of funds to cover rising wage bills could mean up to 30,000 jobs are axed over four years, suggests a report by learning disability charity HFT

David Brindle

06, Dec, 2016 @1:14 PM

Article image
Clock turned back on rights for people with a learning disability
Policies to give people more control over where they live are being reversed in a shift back to residential care to cut costs

Rob Greig

14, Oct, 2016 @7:40 AM