People with learning disabilities remain one of the UK’s most marginalised groups despite policies having been in place to tackle the issue for seven years.
A Community Care survey of more than 1,300 people with learning disabilities last year revealed that many are still excluded from society with little control over their lives. Two-thirds of those without a job or a place of their own wanted both. It’s why we launched our campaign, A Life Like Any Other, at Community Care Live last May. We wanted to show the importance of every person with learning disabilities having the opportunity to work, live independently and play a full part in the community.
Launched in 2001, the Valuing People white paper sought to enable people with learning disabilities to live as equal citizens and fully participate in society. The policies were sound – with its push for rights, inclusion, choice and self-directed support – but implementation was poor.
Our campaign, welcomed by care services minister Ivan Lewis and backed by the 10 charities of the Learning Disability Coalition, sought to re-energise this agenda. In pursuit of this, we’ve canvassed opinion, conducted original research, shared best practice, run a high profile conference and circulated a large petition.
While the original white paper gave people with learning disabilities a platform, the benefits of partnership working, person-centred planning, direct payments and advocacy have only been enjoyed by a minority. The determination to make it happen petered out and good education and training, healthcare, housing and employment are still a dream for many.
At least most people with learning disabilities no longer live in NHS-run facilities, but not before the recent abuse scandals in Cornwall and Sutton and Merton. And the murders of Steven Hoskin and Raymond Atherton suggest more work needs to be done on support packages in the community.
But Valuing People Now takes a more determined approach. If its predecessor set out the direction of travel, then this paper is the road map. It proposes nearly 100 local or national actions, setting out what should be achieved over the next three years.
Rob Greig, national co-director of learning disabilities, says: “There is a focus on priorities and what needs to be done to support their delivery. And there’s a clear agenda for people to focus on locally, underpinned by cross-government department sign up.”
Elements of it are being introduced as targets. One, for example, on learning disabilities is in the recent operating framework for the NHS, and the employment issue is one of the 198 indicators in the local strategic partners performance framework.
The transfer of commissioning for learning disability care services from the NHS to local government is also a positive step. Councils are better tuned to the social inclusion agenda and it will free up trusts to concentrate on health commissioning.
Timing is also important. Anne Williams, president of the Association of Directors of Adult Social Services, says: “The original was a good white paper. But when you look back – despite huge commitment from people in the field – it wasn’t the right time for cross-government commitments and, if anything, the situation got worse with disinvestment by the Learning and Skills Council and the NHS. It now feels like the right time for the agenda to be delivered.”
Valuing People Now sets out how the personalisation agenda will be expanded and demands more inclusion from mainstream services, such as Job Centre Plus, further education colleges and the NHS. It recognises that getting such agencies to work together is at the heart of improving people’s lives. This is typified by the new Getting a Life project, which four government departments have signed up to. It seeks to bring together all the funding and assessment systems for young people going through transition to deliver better education and employment opportunities.
On housing, there’s a programme to promote the inclusion of people with learning disabilities in mainstream housing initiatives, and funding to support the closure of the remaining NHS campuses.
The government is also moving away from day centre modernisation towards supporting people to live the lives that they want as equal citizens in their communities.
Delivery is a key focus of Valuing People Now. In addition to targets, the government wants to give local partnership boards – which include people with learning disabilities and their carers as members – more influence. It is considering a statutory requirement on public agencies to consult partnership boards in order to overcome their patchy performance.
Dame Jo Williams, chief executive of Mencap, agrees that giving partnership boards “teeth” is critical to success but says councils also have to take “real ownership” of the issues – they have to be built in to strategic partnerships and local area agreements, and involve wider services such as housing and leisure. “How local authorities demonstrate a whole commitment to people with learning disabilities and their families is what is really going to matter,” she says.
Funding, however, could stymie the success of Valuing People Now. The government has defended its tight settlement for the next three years, suggesting that existing funding can be invested to better effect. This seems to ignore demographics, with the number of people known to services predicted to increase by 48% between 2001 and 2021, many with more complex needs.
Andrew Holman, director of Inspired Services, says: “It is now accepted that there is a need for greater resourcing if people with learning disabilities are to be supported to have a life of their own. Unfortunately we do not have a clear idea of how much implementation will cost, instead the responsibility for funding has been passed onto cash strapped local authorities.”
Nevertheless, Valuing People Now is an important step. It embodies the aims of A Life Like Any Other and represents the right moment to tie up the campaign. While we will continue to follow its implementation closely, we are confident change is coming.
A Life Like Any Other
● The campaign was launched at Community Care Live in May. It called for people with learning disabilities to be offered the same life chances as everyone else. Care services minister Ivan Lewis welcomed our campaign and said his top priority was to re-energise Valuing People.
More than 1,300 people with learning disabilities responded to our ground-breaking survey, most saying they wanted to live independently and needed more support to achieve it.
Human resource professionals: a joint survey with Personnel Today revealed the barriers to people with learning disabilities getting jobs, and an article in the magazine informed its 50,000 HR readers about the benefits.
Doctors: we wrote articles for Doctor and Hospital Doctor on how to improve healthcare for people with learning disabilities.
● The campaign conference
More than 120 social care professionals, people with learning disabilities and policy makers attended our conference to discuss the way ahead. Care services minister Ivan Lewis again addressed – and listened to – the audience.
● Research and practice
Community Care ran regular articles on the latest news evidence and best practice in learning disabilities.
Community Care will submit its joint petition, which calls for an end to cutting disability services, with the Learning Disability Coalition when there are 10,000 signatories . There is now a real chance to improve the lives of everyone with learning disabilities. Please sign online at www.communitycare.co.uk/campaign.
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This article appeared in the 17 January issue under the headline “Deliver on the promises”