Wednesday, 11 January 2012

Defending the Independent Living Fund

In a discussion about my critique of disability policy, someone expressed surprise that I hadn’t written about the closure of the Independent Living Fund.  They were right that this is a serious omission from any analysis of the current attack on disabled people’s access to civil and human rights.  My only excuse is that every time I started to include the issue there was too much I wanted to say about the history and demise of the ILF.

The setting up of the Independent Living Fund in 1988 was an example of ‘progress by default’ in the heyday of the Thatcher government’s attack on the welfare state. This attack included abolishing something called the Domestic Needs Allowance.  This (unpublicised and therefore underclaimed) benefit was paid to a small group of disabled people who qualified for an addition to their Supplementary Benefit because they needed help with ‘ordinary domestic tasks’ like cooking and cleaning. Its abolition was part and parcel of the then Tory government doing what this Coalition government is doing – attempting to cut the benefits bill while claiming to be introducing new systems which would enable ‘better targeting’.  Then, as now, it was the House of Lords which mounted significant resistance resulting in a number of changes to the legislation, including the announcement by the government that they would set up a Fund to help ‘people who are severely disabled’, who were on low incomes, in receipt of attendance allowance, and who had to pay for their ‘domestic care’.   

The government thought that only about 250 people would qualify; Disability Alliance thought it would be several thousands.  By 1992, over 22,000 people were receiving an ILF grant and the original £5million budget had reached £97 million.

As with Disability Living Allowance, the government found it had introduced a method of supporting disabled people’s additional costs which was popular because it increased autonomy and quality of life.  But, as with DLA, instead of welcoming the success of the policy, the government’s response to the larger numbers of people successfully claiming than expected, was to attempt to reduce the numbers of people qualifying. In 1992, the original ILF was closed overnight and while a new Fund was set up, eligibility was tightened up and disabled people had to already be in receipt of local authority funded services.
Yet still its popularity grew, as did the principle at the heart of the ILF – giving people the money to enable them to purchase their own support. 

In 1993 I published research[i], comparing the experiences of people who were dependent on traditional services for the help they needed with those who received grants from the Independent Living Fund or cash payments from their local authority (at that point these direct payments were technically illegal until the 1996 Community Care (Direct Payments) Act was passed).  The contrast was striking in terms of people’s access to privacy and a family life, and to the opportunities they had for participating in society: ILF grants gave people control over the support they needed and meant their human and civil rights were protected and promoted.

These findings were echoed by all the research carried out during the 1990s and in more recent years – ILF grants have given people choice and control and have, as the most recent review found, been particularly good at reaching people with significant learning difficulties, who made up almost a third of those receiving grants in 2006

So why close it down?  The main incentive was of course the Department for Work and Pensions’ need to offer up savings to the Treasury in the context of cutting the deficit.  In looking for reasons DWP argued that "an independent discretionary trust delivering social care is financiallyunsustainable”.

The ILF was not a perfect system: amongst other things, it discriminated against older people (by imposing an upper age limit of 65 at the point of application) and against those with the highest support needs (by imposing a weekly limit on how much support can be funded). The independent review carried out in 2006 recommended – in the longer term – merging it into a new system of delivering social care based on the individual budgets which were being piloted at that time.

And the ILF is undoubtedly an anomaly.  In its initial phase it was entirely part of the national social security system but funded needs which were otherwise met by locally delivered social care systems. Since 1992, it has been more of a hybrid in that, while it is funded within the national social security system, the gateway to an ILF grant is through the locally delivered social care system.

When I was working with the Prime Minister’s Strategy Unit, on what became Improvingthe Life Chances of Disabled People,   the logic of our analysis of independent living and the policies needed to deliver it led us to discuss whether there should be a national delivery mechanism – akin to the Independent Living Fund.  We drew back from this, partly because of political pragmatism but also on the grounds that it would undermine local democracy. 

I’ve never been entirely happy with this latter reason. It is only a historical accident – not because of considered policy design – that disabled people’s additional costs are currently addressed by two entirely different systems: Disability Living Allowance, non-means-tested and delivered through a national social security system; and community care (whether as services or direct payments) means-tested and delivered through a local system subject to local and professional discretion.

The Dilnot Commission, in response to the years of evidence of a ‘postcode lottery’ in access to social care recommends a national system of assessment.  We already have one – it’s called the Independent Living Fund.

For years, there have been attempts to encourage local authorities to use direct payments (and now personal budgets) to enable disabled people to have choice and control over the support they need to go about their daily lives.  Yet there remains a postcode lottery of not only the level of support available but the extent to which an individual can have control over the resources available.

As Colin Barnes has written, “One way out of this mess would be to take the distribution of direct payments out of the hands of local authorities and centralise it. This could be achieved by setting up a new national body similar to the ILF and accountable to organisations controlled and run by disabled people such as the National Centre for Independent Living (NCIL)”. [ii]

In the next few months the government will be publishing a consultation on the Independent Living Fund, and its long awaited White Paper in response to both the Dilnot Commission and the Law Commission’s report on community care legislation. The debate so far has mainly been related to how we can fund adult social care but there is an equally important debate to be had about the principles of delivery.  I would suggest, as a starting point, these should include:

- nationally consistent entitlements: ‘postcode lotteries’ are unjust and create disincentives to move in pursuit of employment opportunities or because of family commitments;

- universality, i.e. no means-test: disabled people face additional costs and a modern welfare state should fund these costs, out of general taxation, to create a level playing field;

- choice and control: self-determination is a basic human right which disabled people cannot experience unless they have choice and control over the support needed to go about their daily lives.

The Association of Directors of Adult Social Services told the Joint Committee on Human Rights Inquiry intoIndependent Living that, in the current climate, they are unlikely to provide replacement funding for all those who would previously have qualified for ILF grants.  This is the reality facing disabled people and which must be addressed by the government in its plans for the future of adult social care.

In the meantime, I would urge people to sign Disabled People Against the Cuts’ (DPAC) letter which urges the government to carry out a separate consultation on the ILF (rather than just including it in that on future funding of adult social care), and to continue the separate funding that the ILF provides. You can get a copy of the letter and sign up by visiting the DPAC website or emailing

[i] Morris, J. 1993. Independent Lives? Community Care and Disabled People, Macmillan.

[ii]  Barnes, C. 2007.’Direct payments and their future: an ethical concern?’ in Ethics and Social Welfare, 1(3), pp. 349-354.