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End of the Independent Living Fund is the start of a new chapter

Henwood-Melanie1.gifHudson, bob web.jpgby Melanie Henwood and Professor Bob Hudson

Since May this year the future of the Independent Living Fund (ILF) has been a matter of increased speculation and controversy.

Initially the ILF introduced rules that would restrict new applications to people in paid employment for at least 16 hours a week, as well as raising the threshold to £340 per week of local authority support that people needed to receive to be eligible for the ILF. A month later, the ILF trustees moved to close the fund to all new applicants for the remainder of the financial year in order to protect support for the existing 21,000 users of the fund. Whether and how the ILF would continue in the longer term was a matter of considerable uncertainty.

In a written ministerial statement on 13 December, Maria Miller announced that following consultation it had been concluded “that the model of the ILF as an independent discretionary trust delivering social care is financially unsustainable. The Independent Living Fund will, therefore, remain closed permanently to new applications.”

On first sight this may appear a stark and brutal decision that chimes with the current climate of cuts and spending restrictions, and is hardly in the spirit of the festive season. But there is more to this than meets the eye, and the decision is not only about financial expediency. The statement also pointed to the “strong and principled case forreform and for the social care support needs of all disabled people tobe delivered equitably as part of local authorities’ broaderindependent living strategies in line with local priorities and localaccountability.”

This is the heart of the issue.

More than fouryears ago we were commissioned by the Department for Work and Pensionsto undertake an independent review of the ILF. Our core conclusion wasthat it is highly anomalous for significant amounts of public money tobe placed in the hands of a cash-limited, discretionary fundadministered by a board of trustees, resulting in inequity, lack ofaccountability, overlap and duplication of functions, arbitrarydecisions and major confusion for disabled people seeking support forindependent living.

This is an anachronistic and paternalistic modelthat should have no place in a 21st century system of care and support.We recommended therefore that the ILF should be fully integrated withpersonal budgets rather than existing as a parallel system of socialcare funding.

Despite welcoming our report, the previous administration failed to acton it, and the coalition government should be congratulated for thesefirst steps towards a principled and strategic decision about thefuture of the fund.

Nonetheless, there are many vital issues that mustbe addressed as a matter of urgency. The minister stressed that boththe ILF and the government are concerned to safeguard the position ofexisting recipients of the fund, and a formal consultation will followthe publication of the report by the Commission on the Funding of Careand Support in 2011.

The consultation will inform decisions about howbest to support existing users of the ILF within a system based onpersonal budgets. Support for the ILF to administer existing awardswill continue throughout this parliament, and the programme budget willbe protected. 

However, this is only one part of the picture. There isunderstandable concern among some disabled people at the implicationsof the demise of the ILF. There have also been user voices arguingthat it is indeed time to ‘scrap the ILF’, particularly because of therestrictions over how the money can be used which is incompatible withthe values of maximum choice and control. There are many differentviews, and it will be vital that the consultation listens to the voicesof the wide community of disabled people, and not only those who arecurrently users of the fund.

There will need to be transitional arrangements to ensure that existingusers have their allocations protected, but there must also be amechanism to transfer the ILF pot into whatever arrangements replaceit. Despite its many organisational shortcomings, the value of the ILFto people’s lives is immense and the difference it can make in enablingpeople with high support needs to live independently is too valuable toallow this additional resource simply to vanish or to be absorbed ingeneral local authority spending.

Moreover, some of the best featuresof the ILF should be incorporated into personal budgets – notably inestablishing a national and portable system rather than one based onlocal variability and eligibility.

The ILF was a creature of its time. Established in 1988 to deal withsome of the unintended consequences of the reorganisation of the socialsecurity system, it was anticipated it would be a temporary body with alifespan of no more than five years. The popularity of the ILF andthe rise in applications made this early closure impossible. The ILFwas – in its time – innovative and in providing cash for care it pavedthe way for more recent developments with direct payments and personalbudgets. However, access to the fund was restricted and there was aninherent and uneasy tension between discretion and entitlement.

Thecentral concern in looking to the future must be to understand the sortof arrangements that would be of greatest benefit to all disabledpeople seeking to live independently. The closure of the fund is adifficult but important decision, but reform will only deliver thesewider objectives if there is full integration with personal budgets.

The process that has now begun should not simply be about the end ofthe ILF, but about the beginnings of a new chapter in how best tosupport disabled people to live their lives as they choose.

Melanie Henwood OBE is a health and social care consultant

Bob Hudson is honorary professor in the School of Applied Social Sciences at Durham University

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3 Responses to End of the Independent Living Fund is the start of a new chapter

  1. Robert Droy 12 April , 2013 at 1:00 am #

    As one of the leading Disabled People’s organisations in the country, Southampton Centre for Independent Living feel compelled to respond to the blog by on the end of the Independent Living Fund. Whilst two non-disabled academics may welcome this news, we can assure your readership that the vast majority of Disabled People are increasingly concerned about this development, particularly as there appears to be no strategy from the government as to how Disabled People with high support needs, will be supported to live independently in the future.
    It may appear that a simple solution will be just to hand the funding to the local authorities. However with the current government’s dislike of ring fencing, Disabled People will worry that this funding will just be absorbed into an already underfunded social care system, leaving many Disabled People with high support needs high and dry.
    The other difficulty, that the authors fail to understand, is whilst not perfect, the Independent Living Fund enabled Disabled People to exercise geographical mobility by facilitating ‘portability’ of care packages, something local authority social care funding has failed to achieve. We would also contend from our many years supporting Disabled People to live independently that local authorities impose much tighter restrictions over how funding is used, than the ILF do. Indeed the ILF’s light touch to regulation encourages creativity and innovation for users as opposed to the ‘get up, go to bed’ approach of many local authorities.
    We are not opposed to ‘reform’ of ILF, however Disabled People demand a voice in deciding the way forward. This is the time for academics to put away their text books and journals and start listening to the people who matter most – the users themselves.

  2. caninep 12 April , 2013 at 1:00 am #

    Robert makes some excellent points in his response to the “professionals” account of the demise of the ILF.

    I wonder how many readers of community care are subject to having their lives continually overseen by so called professionals deciding on what is best for them in their lives.

    I came across the ILF in 1989 at a desparate time in my life. As disabled women left by her partner and receiving direct services from my Local Authority I was subject to degrading and humiliating treatment. I had more than ten so called professionals in my home in any one week. There was the bath nurse who came on a Monday (my day for having a bath) as all Bank Holidays fall on a Monday I could sometimes go three weeks without having a bath. Then there were the “carers” who changed weekly to offer me minimal support, Then at night I had the district nurse who could arrive anytime between 7 and midnight to help me into my night clothes. On one occasion they decided that I was to be undressed only if they wore rubber gloves and a platic apron. When I asked why they said it was due to cross contamination. Funny that because I never knew Cerebral Palsy was contagious.

    I had no control over what time I got up, what time I went to bed, what time I visited the toilet, what time I ate or for that matter what I ate. As a result of the lack of care I received I was forced into having a hysterectomy.

    I started having 14 hrs support from the ILF and I used this money not to get me out to enjoy myself but to employ a Personal Assistant to assist me to get to bed at a time when I wanted to go. I relied mostly on friends to assist me socially which whilst kind gave me no sense of equality or independence.

    Over the years I have secured a mixed funding package through ILF and Direct Payments. This enables me to employ 6 Personal Assistants all paying NI and taxes thus contributing to the economy whilst at the same time allows me to contribute to this BIG SOCIETY by supporting others who receiving funding through my website.

    The thought of going back into that black hole againfills me with horror as it does for all disabled people like myself. Unless disabled people get the support they need how can they fully contribute to society?

    Robert ends by stating:

    “We are not opposed to ‘reform’ of ILF, however Disabled People demand a voice in deciding the way forward. This is the time for academics to put away their text books and journals and start listening to the people who matter most – the users themselves”.

    I couldnt have put this better and I fully support his views.

    Robert finishes by stating