Independent Living Fund – from the sublime to the ridiculous?

Abstract

This article will briefly examine the establishment of the Independent Living Fund (ILF) and set it in a political and historical context, describing general political developments and those specific to disabled people. Central to the discussion will be legislative and policy developments since the start of ILF and attempts – or lack of – to quantify the impact of the ILF. In tracking the ‘life’ of the ILF I shall examine what made it distinctive, why disabled people have been keen to retain it, and how, why and when it fell from political favour, leading to its closure despite that keenness.

Introduction

In the nineteenth and twentieth centuries, as western societies moved more and more towards industrialisation and technological development, disability was regarded mostly as tragedy: medical, welfare or charitable approaches were society’s response to disabled people. The late 1960s and early 1970s saw the seeds of the independent living movement planted and in the following 20–30 years they grew vigorously, if rather unevenly. An international disabled people’s organisation was established in 1981 – Disabled People’s International¹ – and Centres for Independent Living and Coalitions of disabled people were set up in the United Kingdom: the disabled people’s movement was dubbed the last civil rights movement (Driedger 1989) because disabled people themselves challenged the traditional portrayals of disability.

The Independent Living Fund (ILF) was established in 1988. As Jenny Morris explained:

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 (DNA).²

The DNA was an extra payment available to people on supplementary benefit³ which a small number of disabled people received in recognition of their need for support in doing ordinary domestic tasks. There was opposition, some of which came from the House of Lords, to these attempts at ‘welfare reform’, and the ‘compromise’ was 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’.⁴ Hence the ILF was born.

Expectations had been that take-up of this new benefit would be small and a budget was set at £5 million. However, disabled people quickly recognised the worth of this new benefit and the budget had risen to £97 million with 22,000 recipients by 1992, when the government closed the initial ILF scheme to new applicants. They then introduced a ‘new’ ILF with tighter eligibility criteria and a need for the ILF recipient to already have a set level of local authority financial support in place. Nevertheless, the popularity of the ILF remained and grew. The ILF was successful and many recipients felt it to be a flexible and portable way to fund independent living.

Towards independent living?

The late 1990s and the following decade saw such initiatives as the ‘Valuing People’ learning disability strategy, the Direct Payments Implementation Programme, the Supporting People Programme, the various Disability Discrimination/Equality Acts and a raft of policies and programmes on social care. It also saw the further growth of disabled people’s organisations and the establishment of the National Centre for Independent Living, which celebrated its 30th anniversary in 2012. Since 2010 we have had, for example, ‘Fulfilling Potential’,⁵ the ‘government’s disability strategy’, and the Care Act 2014 which has been described as ‘a missed opportunity’⁶ in terms of moving towards a rights-based, rather than a welfare-based, approach.

In 2005 the Labour government had produced the ‘Improving the Life Chances of Disabled People’ report⁷. proposing that the government should set an ‘ambitious vision’ that:

By 2025, disabled people in Britain should have full opportunities and choices to improve their quality of life and will be respected and included as equal members of society.

The report identified one of the measures to achieve this as:

Helping disabled people to achieve independent living by moving progressively to individual budgets for disabled people, drawing together the services to which they are entitled and giving them greater choice over the mix of support they receive in the form of cash and/or direct provision of services. In the shorter term, measures should also be taken to improve the advice services available to disabled people and to address existing problems with suitable housing and transport.

The ‘Life Chances’ report also made key recommendations on supporting independent living, piloting individualised budgets and supporting disabled people to help themselves, as well as user involvement and user-led organisations. In 2008 the government published the Independent Living Strategy,⁸ which said, amongst other things, that:

It is the Government’s ambition that, by 2013, disabled people have more choice and control over how their needs for support and/or equipment are met. We also need to make significant progress in tackling barriers to disabled people’s access to health, housing, transport, and employment opportunities.

However, despite some initiatives being in line with ‘Life Chances’ recommendations, in 2010 the incoming coalition government quickly ‘archived’ the report in its entirety – a decisive ‘kick into the long grass’. Among other following actions, the government announced in 2012 the closure of the ILF in 2015. There was a proposed, time-limited transfer of the funds – which would not be ring-fenced – to local authorities, many of whom were already making hefty budget cuts under the government’s programme of austerity. Many people raised concerns specifically over this lack of ring-fencing; a Freedom of Information request from Disability Rights UK⁹ found that few local authorities had either the intention or a robust plan to ring-fence the funds, whilst the Association of Directors of Adult Social Services acknowledged that it was likely that some ILF recipients would receive a lesser package of support.

A small group of ILF recipients challenged the legality of the proposed closure and in November 2013 Community Care magazine¹⁰ reported that:

… the government must review its decision to close the Independent Living Fund in 2015 after it was quashed by the Court of Appeal today. Three judges ruled unanimously that the Department for Work and Pensions had acted unlawfully in taking the decision in December 2012 without complying with its duty to promote equality for disabled people.

The Law Lords found that the brief given to the Minister for Disabled People had failed to make clear the ‘potentially very grave impact’ of the proposed closure. Furthermore they found that the Department for Work and Pensions (DWP) had failed to take into account the requirements of the duty, under section 149 of the Equality Act 2010, to have ‘due regard’ to the need to promote equality of opportunity between disabled and non-disabled people in its decision to close the fund. The government moved quickly, however, and announced a fresh decision to close the fund following new equalities analysis by the DWP. This has led to disabled people¹¹ asking the United Nations to investigate this decision.

A review of progress¹² on independent living, published in July 2014 disappointingly found that:

There is a lack of significant progress on important commitments and that, instead, disabled people are experiencing diminishing opportunities for independent living.

The context for the development, and attempts at implementation, of measures to support independent living is complex. Of recent note was the ‘Right to Control’ (RtC) pilot scheme, launched in 2010: as recommended in the ‘Life Chances’ report, it aimed to combine six different support budgets across government departments, and at local and national levels – including the ILF initially – in order to deliver a truly person-centred support mechanism and to do away with interminable assessments and bureaucracy. Most importantly was the right to control – for the first time, disabled people living in the pilot areas had the legal right to access this new scheme.

Disabled people and their organisations who were involved were broadly supportive of the RtC; however, the government’s evaluation – published even before the pilots had ended – disappointingly said that the pilots ‘had failed to deliver any benefit’.¹³ Disabled people and their organisations involved in the RtC begged to differ: for example, Disability Rights UK said:¹⁴

… it was not an easy task to change the rules and procedures so that six funding streams could come together into one budget that disabled people can control; and in many areas this had not happened fully, so the evaluation is a comment on the stage of systems change. The pilots were barely up and running by the time the evaluators came along. (Emphasis added)

The value of The ILF

The ILF was, in truth, a new way of supporting independence by making funds directly available to the individual, with a higher level of flexibility as to how to ‘meet needs’ than ever before. A major difference from previous schemes was that it was a national scheme, and therefore geographically ‘portable’, with criteria and structures which were not dependent on local budgets and politics, other than that relating to the contribution to independent living costs from the local authority. The approach of the ILF also differed from that of traditional ‘social services’ provision, which many disabled people reported as having an overbearingly ‘doing unto’ approach, led by financial decision-making rather than being based on assessed need. ILF, on the other hand, was more focused on the self-assessed needs of the individual, and was more flexible about how those needs were met. People in receipt of the ILF discovered a world of possibilities and expectations that had never been open to them before, a world that put them in control of their own life-course, often for the first time in their lives: ILF recipients found themselves jobs, started families and contributed to their communities. Furthermore, the support that they were now able to organise not only protected their privacy and dignity but also helped protect their human and civil rights.

The ‘first’ ILF was closed to new applicants in 1992; the government has now closed both schemes entirely. Two main arguments are made as to why: firstly, that support needs will be better met locally in line with local practice and resources; and secondly, that the rising costs of ILF had become unsustainable. These arguments do not bear close examination. In their responses to the consultation on the closure, individual disabled people, their own organisations and bodies such as the Association of Directors of Adult Social Services all expressed concern that support needs would no longer be sufficiently funded. In reality the claim that closing the ILF is part of devolving powers and budgets to local authorities starkly illustrates that it is cuts which are being devolved, not powers, in order for the DWP to offer austerity savings to the Treasury. In terms of sustainability, some have argued that a true cost/benefit analysis of funding independent living is yet to be carried out,¹⁵ whilst studies that have been done¹⁶ demonstrate on the whole that economically – and qualitatively – independent living support is both a saving and an improvement on traditional ‘care’ services.

Furthermore, the notion of independent living support as an investment, rather than a cost, has been suggested,¹⁷ but again no real economic analysis which takes into account, for example, the impact on a local economy of one or more disabled people employing multiple personal assistants.

Conclusions

In the current climate of the government seemingly targeting disabled people via welfare reform, it seems clear that the closure of the ILF must be ideological. The savings to government are insignificant, the ILF is a scheme supported by disabled people and their organisations, and it is acknowledged as providing quality and enhancing peoples civil and human rights. But what will be the legacy of the ILF? The devolved nations of the United Kingdom are all taking different approaches to the closure of the ILF, with the Fund planned to continue in one form or another everywhere except England, meaning that varieties of the model will continue and indeed may well see improvements. The ILF, and those in receipt of it, have shown just how much is possible in terms of independent living with a flexible system of good support. This applies as much to people with learning disabilities, who have been the greatest users of the ILF,¹⁸ as to those with other impairments. The process of the closure, disabled people’s strong legal defence of the ILF and the government’s response and repeated refusal to measure the impact of the closure on disabled people will provide rich analysis – and perhaps cogent arguments – to illustrate the benefits of proper support for independent living. But perhaps the most significant legacy from the ILF and its closure will be the possibility that it would be a component of an – officially unconfirmed at the time of writing – UN investigation¹⁹ into ‘grave or systematic violations’ of the rights of disabled people which, if proven, would be a serious breach of the UN Convention on the Rights of Disabled People, particularly Article 19, ‘living independently and being included in the community’. The struggle for independent living is not over.

Disclosure statement

No potential conflict of interest was reported by the author.

Notes

1. See https://en.wikipedia.org/wiki/Disabled_Peoples’_International. Accessed 5 August 2015.

2. See http://jennymorrisnet.blogspot.co.uk/2012/01/defending-independent-living-fund.html.

3. Supplementary benefit was a means-tested benefit paid to people on a low income and intended to 'top up' other benefits. It was replaced in April 1988 by income support.

4. See http://jennymorrisnet.blogspot.co.uk/2012/01/defending-independent-living-fund.html. Accessed 11 August 2015.

5. See https://www.gov.uk/government/collections/fulfilling-potential-working-together-to-improve-the-lives-of-disabled-people. Accessed 11 August 2015.

6. See http://webjcli.org/article/view/365/464. Accessed 11 August 2015.

7. See http://webarchive.nationalarchives.gov.uk/+/http:/www.cabinetoffice.gov.uk/media/cabinetoffice/strategy/assets/disability.pdf. Accessed 11 August 2015.

8. See http://socialwelfare.bl.uk/subject-areas/services-client-groups/adults-disabilities/officefordisabilityissues/138779independent_living_report.pdf. Accessed 11 August 2015.

9. See http://www.disabilityrightsuk.org/news/2015/april/most-councils-will-not-ring-fence-ilf-resources. Accessed 11 August 2015.

10. See http://www.communitycare.co.uk/2013/11/06/court-of-appeal-quashes-government-decision-to-close-independent-living-fund/#.UqVqGPRdWHg. Accessed 11 August 2015.

11. See http://www.disabilitynewsservice.com/un-complaint-puts-ilf-closure-under-international-microscope/. Accessed 14 August 2015.

12. See http://www.disabilityrightsuk.org/news/2014/july/independent-living-strategy-review-progress. Accessed 14 August 2015.

13. See http://webarchive.nationalarchives.gov.uk/20130812104657/http://odi.dwp.gov.uk/docs/wor/rtc/rtc-synthesis-report.pdf#sthash.QoiGykxk.dpuf. Accessed 14 August 2015.

14. See http://www.disabilityrightsuk.org/news/2013/august/dr-uk-response-right-control-pilots#sthash.dmR1Da7g.dpuf. Accessed 14 August 2015.

15. See http://www.independentliving.org/docs6/zarb2003.html#purpose. Accessed 14 August 2015.

16. See http://socialwelfare.bl.uk/subject-areas/services-client-groups/adults-disabilities/officefordisabilityissues/138356costs_benefits_summary.pdf. Accessed 14 August 2015.

17. See http://www.enil.eu/wp-content/uploads/2012/06/Cost-survey_FINAL.pdf. Accessed 16 August 2015.

18. See http://jennymorrisnet.blogspot.co.uk/2014/10/unanswered-questionstill-whats-your.html. Accessed 16 August 2015.

19. See http://www.disabilitynewsservice.com/un-gives-strongest-clue-yet-that-uk-is-facing-inquiry-over-violation-of-convention/. Accessed 16 August 2015.