Posted: 08 Nov 2013 11:30 AM PST
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
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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