INDEPENDENT LIVING: A POSITION STATEMENT FROM THE INDEPENDENT LIVING STRATEGY GROUP

The Independent Living Strategy Group is a network of disabled people’s organisations and their allies. The group is chaired by Baroness Jane Campbell and includes disabled people who were part of the independent living movement from the 1970s, as well as younger activists, other individuals and organisations concerned with the future of independent living.

“Independent living is what non-disabled people take for granted”

Independent living means disabled people living in the community with the same choices, control and freedom as any other citizen, with the removal of barriers to equality of opportunity, and where any practical assistance is based on our own choices and aspirations. The same principles extend to people managing long term health conditions, and include people of all ages.

Over the last thirty years or so, we have seen major improvements in disabled people’s life chances. Our society now expects disabled people to be treated with respect, to have opportunities, to live in their own homes with their own families, and make their own contributions to their local communities and to society generally.

Much of this progress has been brought about by the efforts of disabled people themselves and their organisations. We persuaded both central and local government that the resources that society makes available should be spent in ways which enable us to achieve our goals, to participate and to contribute just as much as any other citizen. Our case for a more integrated and joined up response to our needs, with the emphasis on supporting self-determination, has been largely accepted although not yet fully realised.

These victories were a reflection of support for the kind of society which includes everyone and a recognition that we all benefit from living in inclusive, accessible and welcoming communities. There is widespread support for public services which meet people’s aspirations and the needs of modern society.

Our aspirations for independent living are, therefore, a shared enterprise between disabled people, government and the wider society – and they will only be achieved if policies and their implementation are carried out in partnership with us.

Independent living is not just about social care. Neither is it about living on your own or doing things for yourself. Instead it means having choice and control over whatever assistance we need to go about our daily lives. It means, as the UN Convention on the Rights of People with Disabilities says, having the equal right to live in the community, with choices equal to others.

Our aspirations rely on an integrated support framework and the removal of barriers in all aspects of our lives. We all want a society which invests in the things that connect people to one another and to communities, the things that make us all feel part of society and not ‘apart from’ society.

It is this vision of independent living which we believe must underpin the political and public debates about the future of social care. We look to both central and local government to promote, protect and fulfil the rights of disabled people to live independently in the community and to secure their full inclusion, contribution and participation in all aspects of social and economic life.

We urge public and politicians alike to move beyond the current debate about the cost of residential care for older people. People of all ages, who need assistance to go about their daily lives, want to be connected to their communities and to have choices equal to others. The best practice that currently goes under the heading of ‘social care’ is about enabling the lives we choose to live. When this is achieved it is the most important thing that our society can do for its citizens. Our public and political debate should therefore be about how do we achieve this because, if we do, all our lives will be improved.

As a Group, and also as individuals and organisations making up the Independent Living Strategy Group, we will:

  • work with the Equality and Human Rights Commission to develop an enforceable right to independent living
  • campaign to build public understanding of and support for independent living and to raise it up the political agenda
  • work to influence the full range of policy developments relevant to independent living
  • Identify and share the best and the most promising practice in supporting independent living
  • make the case for resourcing a national network of disabled people-led organisations to promote and support the right of disabled people to live independently and to secure their full inclusion and participation in all aspects of social and economic life
  • support the case for extending the NHS’s ‘need, not ability to pay’ principle to social care and for fully funding the service as part of ‘new social contract’ between the citizen and the state (as recommended by the 2018 Darzi review of health and social care).
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