by 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