Ten years on

Living WELL, Jun 2006 by Morgan, Hazel

Key points

* Hazel Morgan reflects on some policy changes over the last ten years and some challenges for the future.

Introduction

In 1996, I joined the Mental Health Foundation as Learning Disabilities Manager, eight months after the death of my younger son, Peter, who was 18 and had high support needs. Ten years on, as I prepare to retire from my current role as Co-Director of the Foundation for People with Learning Disabilities, I reflect on developments in the lives of people with learning disabilities, and their families over the last decade, from the perspective of a professional and of a family carer.

Over the last 10 years the work of the Foundation has greatly expanded. In 1998, we took the name, Foundation for People with Learning Disabilities, although we remain part of the Mental Health Foundation. Our team has also doubled in size after being joined by staff from the Learning Disability Programme at The Institute of Applied Health and Social Policy at King's College, London. As an organisation we aim to use findings from our research and development work to influence practice and policy throughout the UK.

The policy context

The Foundation's work has a strong focus on policy development. Its inquiry report, Building Expectations (Mental Health Foundation, 1996) provided a number of findings and recommendations, which we were told made a useful contribution to the subsequent development of the white paper Valuing People (DoH, 2001a).

In many ways the policy environment across the UK has been favourable over recent years. It is hard now to recall that in the mid-1990s, apart from passing the very important Disability Discrimination Act, there was little movement on policy for people with learning disabilities. However, change was in the air and several learning disability organisations pressed the Labour administration to produce the first policy paper since 1971.

The principles in Valuing People - rights, independence, choice and inclusion - have underpinned developments in the lives of people with learning disabilities and have gained wide acceptance. Similar values have been expressed in policy documents across the UK (Scottish Executive, 2000; Welsh Assembly, 2001). However it is difficult to make sure that all people's lives are substantially different:

'Valuing People is changing people's lives for the better. However there is still a long way to go... things are not getting better for everyone. This is especially true for people from minority ethnic communities.' Greig, 2005.

Change in policy at the turn of the millennium was brought about by:

* changing ideas on choice and individualism

* pressure from individuals and organisations

* sympathetic leadership at the Department of Health

* self-advocates who had a powerful say.

Continuing change and improvement will be brought about by:

* self-advocates

* family carers

* demonstrating through research the need for different policies and practice

* alliances of powerful organisations.

The role of self-advocates

I believe that self-advocates are increasingly the most powerful agents of change. When I joined the Foundation, I was surprised by the role that self-advocates play in influencing policy. I had little personal experience of advocacy, having found it impossible to find a local service to ensure Peter's interests were represented in the final months of his life. The local Mencap officer fulfilled this role when decisions were made about his discharge from hospital, which meant I was unprepared for the role that many self-advocates were playing nationally.

The Foundation for People with Learning Disabilities works with people with learning disabilities, their families and supporters to bring about change. The Foundation has recently set up an advisory group of people with learning disabilities and also includes people with learning disabilities on its new advisory board to the Mental Health Foundation trustees. People with learning disabilities previously advised on specific areas of work and now help to oversee and influence strategy. Nationally, the self-advocate who is Co- Director of Learning Disability at the Department of Health, along with those on the National Forum, should be powerful voices for change.

The role of family carers

The role of family carers in influencing policy is now more widely accepted than in previous years. When I joined the Foundation, I knew that parents could be perceived as difficult, but found that family carers could be viewed with suspicion by both professionals and people with learning disabilities and seen as 'obstacles'. Understandably, adults with learning disabilities will be worried if their families have undue influence over their lives, although they may appreciate their concern and support.

For people with high support needs, their families are often their strongest champions. 'You always fought for Peter,' I was told. I was not unique. Other parents and families use the language of battle as they seek resources and support for their relatives to lead fulfilling lives. Learning with Families, a video and training pack has been made to enable professionals to understand better the feelings and concerns of family carers (Foundation for People with Learning Disabilities, 2003b).