Great victory last week - but the fight for independent living for disabled people must continue
Last week, a group of disabled people who receive Independent Living Fund payments for extra care support to live independent lives beat the government's decision to close the fund.
Three of the appellants in that case - Anne Pridmore, Gabriel Pepper and Stuart Bracking - have asked us to publish this statement. It explains why the fight for the fund and independent living for disabled people must continue and why disabled people of all ages must have the right to live in the community throughout their lives with the personal assistance and professional services they need.
Video from last week as the Court of Appeal overturned the government's decision to close the fund:
Statement by Anne Pridmore, Gabriel Pepper and Stuart Bracking
As three of the Independent Living Fund users who have challenged the legality of the government’s decision to close the Fund, we welcome the Appeal Court’s unanimous ruling that this decision should be quashed.
Given the Government has decided not to appeal to the Supreme Court, the new Disabled People’s Minister Mike Penning will now have to reconsider the Government's approach to the future of the Independent Living Fund and its users.
Rather than being the ‘privileged group’ referred to in the High Court judgement, the Appeal Court has acknowledged the potentially very grave impact the closure of the Fund would have on its users, putting seriously in peril the ability of a large number of people to live independent lives in their own homes, and pursue activities such as employment and education.
They concluded that when Disabled People’s Minister Esther McVey made her decision in 2012 to finally close the Fund by April 2015, she did not properly consider the need to advance our equality of opportunity, minimise the disadvantage we face, encourage independent living, and promote our participation in public life and other social activities.
For a generation, the Independent Living Fund has provided funding to support disabled people with complex conditions who need personal assistance to live in the community.
Twenty years ago, Disabled People's Minister Nicholas Scott who founded the Fund in 1988 explained its importance to the House of Commons (25/2/1993): "It has helped those severely disabled people who did not want to go into residential care but who could not live in the community without a considerable degree of domiciliary support to maintain their independence. That is something that we can all applaud and welcome." This is as true today as it was then.
In the same speech, Nicholas Scott also acknowledged there were limits to the financial support local authority social services could provide some disabled people: "If it is necessary for extra help to be provided....it will be open to the social worker who assesses the needs of disabled people to say, 'We can provide services up to this level but we believe that a further level of care is necessary,' and then to turn to the Independent Living Fund."
The Independent Living Fund has provided a platform for social opportunities to be pursued by severely disabled people in large numbers for the first time in history.
The careers, family life, friendships, social activities and roles people have built for themselves could be undermined and in many cases dismantled if the Fund closes.
Although the Appeal Court ruled the consultation which preceded Esther McVey’s closure decision was lawful, we believe there is now an opportunity to reflect on our society’s responsibilities towards those who rely on the welfare state to keep them safe, healthy and free of distress.
Last year, 2000 individuals and organisations responded to this consultation, but the Court of Appeal held the real substance of the consultation responses were not conveyed to Disabled People's Minister Esther McVey. An opportunity for an open, democratic debate was lost.
By responding to the World Health Organisation’s recommendation in the World Report on Disability that countries should provide services in the community and not in residential institutions or segregated settings and plan how to achieve this, the human and civil rights of disabled people of all ages could be respected, not just those of Independent Living Fund users
Until a decision is taken to save the Independent Living Fund and open it to new applicants with adequate funding to meet people’s individually assessed needs, the fear many disabled people have expressed about their future will not disappear.
This fear stems from an understanding of the impact limited support in the community will have on people’s life chances, or for some of us the low standards and rigid approaches to personal care found in residential and nursing homes which place people at risk of skin conditions, sores and sepsis.
Many Independent Living Fund users are also acutely aware that, as long-term employers of personal assistants, if they are forced into residential care their knowledge of the law and care standards will bring them into collision with poor management and abusive cultures where they exist.
There is also a significant risk for people with learning difficulties and/or autism of physical and emotional abuse in segregated settings where restraint and drugs are used to control behaviour that is defined as ‘challenging’ rather than being approached with patience, compassion and kindness.
The fear of residential care that exists among Independent Living Fund users with ‘round-the-clock’ needs also exists among large layers of the general public.
When reconsidering the Government’s approach to the future of the Independent Living Fund, the new Disabled People’s Minister Mike Penning could give the Fund a long-term future under the democratic control of its users, but also commit the Government to respect existing rights to an individual assessment of need.
His Government could give disabled people of all ages the right to live in the community throughout their lives with the personal assistance and professional services they need, rather than the artificial and segregated environments found in residential care.
We urge Mike Penning to grasp this opportunity and remove the uncertainty many thousands of severely disabled people and their families have experienced for several years.
We would like to express our sincerest thanks to: our fellow claimants Paris L’amour and John Aspinall and his parents Evonne and Paul Taylforth; the tireless work of solicitors Louise Whitfield of Deighton Pierce Glynn, Kate Whittaker and Diane Astin of Scott-Moncrieff and Associates, and our barrister Mr David Wolfe QC; the supportive intervention of the Equality and Human Rights Commission; and Independent Living Fund user Kevin Caulfield’s networking and guidance during the case.
We also acknowledge those Independent Living Fund users who have highlighted the impact closure would have on their lives, particularly Penny Pepper, Sophie Partridge and Mary Laver, which is not easy given the privacy most Independent Living Fund users and their families strive for.
We would also like to thank: Disabled People Against Cuts and Inclusion London for the campaign coordinated by Linda Burnip, Debbie Jolly, Tracey Lazard and Ellen Clifford; other users of the Fund and disabled activists who have attended protests and vigils and supported the campaign; the two thousand organisations and largely anonymous individuals who responded to the Independent Living Fund consultation a year ago; the support of the PCS union and the workers at the Independent Living Fund; our personal assistants; the work of campaigning journalist Kate Belgrave; and the consistent reporting of this issue by John Pring at the Disability News Service.
The future is ours to shape, but only if the personal assistance we need is present.
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