Change that leads to better lives

Living with a learning disability: how it is and how it could be by Sue Turner & Shaun Picken

Tuesday 27 January 2015 saw a great mix of people gathering at our Learning Disability conference to talk about how everyone has the right to live well and safely in their community with good health, housing, jobs and relationships. What we learned from our speakers with a learning disability is that given the right support, people with high support needs can and do live and work independently and have rich, fulfilling lives.

Sue and Shaun

People with learning disabilities have human rights; a set of basic rights and freedoms that everyone is entitled to, no matter who they are. They recognise that everyone is of equal value, has the right to make their own decisions and should be treated with fairness, dignity and respect. The United Nations Convention on the Rights of Disabled People, an agreement the UK government has signed up to, has important things to say about disabled people’s rights to live in the community, work, have access to good health services, and have relationships.

From our rights-based perspective, it was very depressing to read a lot of reports since our conference that say just how little measurable progress has been made in reducing the numbers of people in in-patient services.

So what do these reports say about people’s rights? Well, Winterbourne View: transforming care two years on says that more needs to be done so that people with learning disabilities:

  • Know their rights
  • Use their rights
  • Have their rights respected

The report contains a new “right to challenge” through the provision of Care and Treatment Reviews on request. The Department of Health is looking at additional rights to a Personal Health Budget to help people to get and stay out of in-patient services. These are some of the issues that the Justice for LB Bill has been campaigning about – a really important piece of work we heard about at our conference.

It was heartening to read that there has finally been an agreement for a single plan and single programme across health and social care to improve the lives of people with a learning disability. Why this hasn’t been put in place before is a mystery, but at least it is happening now.

We know that people with high support needs and their families can overcome many obstacles so that living good lives in the community and having a job, becomes a reality. And done right it can cost less! It was inspiring and encouraging to hear some of their stories at our conference.

The National Audit Office quote the NHS England report saying ‘we make it too hard for stakeholders across the system to make change happen, and too easy to continue with the status quo’. We need to work together, to understand what is possible, and change practice. People’s stories can help change behaviour, one person at a time. So we thank all those self-advocates, families (some who have been through extremely harrowing experiences) academics, health and social care professionals for sharing their expertise and experience with us and furthering our aim to promote inclusive lives for everyone.

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