COMMENT: The Independent Living Fund: ‘We fight on!’

By Stuart Bracking

The decision by the current Disabled People’s Minister Mike Penning to press ahead with the closure of the Independent Living Fund is clearly very disappointing, and has been greeted in one discussion forum with dismay by severely disabled people who use the Fund.

While the Court of Appeal in November was prepared to acknowledge the potentially very grave impact the closure of the Fund would have on its users when it unanimously quashed the original decision, it found the coalition government and Esther McVey did not exercise the same discretion in December 2012.

The Fund was set-up in 1988 with the express condition that its severely disabled users live in the community rather than residential care.

When health and social care were restructured in 1993, the Fund was retained because the then Disabled People’s Minister Nicholas Scott recognised there was limit to what local authorities would be prepared to spend on disabled people with complex conditions.

The original Fund was not conjured out of thin air as a benevolent act by the state, but was the result of years of campaigning by disabled people’s organisations.

It stemmed from the success of disabled pioneers such as Pamela La Fane who fought successfully for the right to leave her long-stay hospital in the 1960s, and Leonard Cheshire residents such as John Evans and Philip Mason who secured the right in the early 1980s to control ‘community care’ funding to employ their own personal assistants so they could live independently.

In pursuit of an agenda first shaped a decade ago to transfer responsibility for Independent Living Fund users to local authorities as part of New Labour’s public service reforms and the erosion of the welfare state, Mike Penning now argues to retain the Fund would fail “to take account of the significant developments in adult social care and the changes which have been made in the past 20 years, in the way disabled people are supported to live independent lives.”

What many Independent Living Fund users and their families are acutely aware of is these ‘significant developments’ have resulted in a situation where more than 400,000 disabled people of all ages are now confined to residential or nursing care, and 45% die within the first year after admission.

For many Fund users with ‘round-the-clock’ needs whose control of their personal assistance has allowed them to lead active, independent lives because of the strict standards they maintain towards their personal care and well-being, a difficult future awaits them if their current funding which is based on an individual assessment of their needs is cut.

Rather than learn from the success of Independent Living Fund users, and help our society to turn a corner and provide ‘care and support’ in the community rather than the current malaise where twice as much is spent a year on residential care than community-based services, Mike Penning’s decision moves us in the opposite direction.

Severely disabled people have never been free of a day-to-day struggle against the social barriers and discrimination that often prevent us from leading an ‘ordinary life’, or the chaos that sometimes results from the dysfunctional relationship between health, social care and welfare services struggling to meet our needs with scarce resources.

Pamela La Fane, John Evans, Philip Mason and thousands more disabled people and family carers never shied away from the struggles before them. Independent Living Fund users and their families will not do that now. We fight on!