A Twitter campaign is gaining pace on the hashtag #DisabilitysNotWorking. Disability activists want people to share their experiences and problems with government policy online.
As part of this, submissions were requested for the recently-closed public consultation on the future of the Independent Living Fund. This is a little beyond the deadline, but something that may provide some background for people on the Fund.
This is “copy and pasted” from a Word Document sent to a disability activist, so apologies if some of the formatting and links are a little off. Hopefully it still all makes sense!
The Independent Living Fund
The Independent Living Fund (ILF) was established in 1988.[i] It was designed to give disabled people discretionary grants to allow them to live within the community. It was administered by trustees appointed partly by the Department of Social Security (DSS) and partly by the Disablement Income Group (DIG), a leading anti-poverty voluntary organisation at the time. This was part of an historical trend towards “care in the community” and “independent living” which had become an important political issue by the late 1980s.[ii] It was also a response to a major restructuring of social security instigated by the “Fowler reviews”.[iii]
The main concern was that recent changes to Supplementary Benefit had taken away money from severely disabled people.[iv] Under the new Income Support scheme, discretionary allowances were replaced with legal rights to benefit awarded to certain claimant groups. One of the advantages to the old Supplementary Benefit was the ability for local officials to find money for those who clearly needed it. However, the Government believed that the administration costs of such discretion were prohibitive.
The fund was controversial for two reasons.
- First, disabled people’s organisations and their allies believed that the ILF was inferior to Supplementary Benefit.
- Second, the fund was launched months after Supplementary Benefit stopped, leaving many disabled people worse off.[v]
However, the Fund became increasingly popular. Administered by a mix of government-appointed and charity-appointed trustees, ILF helped thousands of people to live independently. DIG helped administer the fund. They drew on expertise from around disability organisations.
The popularity of the Fund was also a problem. Although independent of government, funding came from DSS. ILF was only designed to exist for five years until a more satisfactory solution could be found.[vi] This never came, and costs began to increase. Initially, £5 million was set aside for the fund, and the government estimated that it would be paid to ‘up to 1,000’ people.[vii] By 1993 it cost £100 million a year and had helped 21,000 people.[viii]
In 1993, the 1988 Fund was closed to new applicants and a new ILF(1993) was created in its place.[ix] The 1993 Fund placed more restrictions on where money could go. Applicants had to be in receipt of £200 worth of aid from their Local Authority, and could claim no more than £300 from the Fund. While this represented an increase of £50 per person for most of the country, people in the South East of England were penalised as the 1988 Fund made allowances for regional variations in the cost of living.
Disabled people have, since the 1960s, campaigned for two types of state benefit:
- earnings-replacement benefits to cover people when they cannot work;
- and extra-costs benefits to compensate for the additional expenses of living with disability.
ILF covers the second area. It provides grants to cover the additional costs of adapting people’s homes and purchasing aids that allow a disabled person to live at home.
The 1993 Fund was supposed to direct aid to where it was most needed by focussing resources on the most severely disabled people. In doing so, it also attempted to reduce the level of discretion so that resources could be more reliably targeted. Decisions would be more consistent from case to case.
Both of these aims are noble, especially in times of economic hardship. However, history suggests that any attempt to focus resources in such a way does not work either for government or for disabled people.
Discretion was a key element of Beveridge’s original blueprint for what became the Welfare State.[x] While the majority of households could be supported in times of hardship through the National Insurance system, some would always be unable to work and take advantage of such schemes. Disabled people and their carers were two such groups. The National Assistance Board, the Supplementary Benefits Commission, the Social Fund and the ILF all allowed a certain flexibility to cater for the needs of people who were unable to maintain “traditional” forms of employment.
Moreover, extra costs are subjective. There is no typical disabled person, and so no typical framework can be drawn. Everyone’s needs are different. ILF’s discretion allows it to be flexible enough to meet the myriad needs and expectations of severely disabled people.
Disabled people historically have been housed in institutions. Many disabled people lived in work houses and later asylums, geriatric hospital wards and nursing homes. Improvements in technology and social attitudes from the 1940s onwards have allowed people to live independently.[xi]
It would be wrong to ignore the other driving factor however – cost. It is far more expensive to keep a disabled person institutionalised than it is to pay for her to live in the community. By cutting extra-costs benefits such as ILF and the Disability Living Allowance disabled people will be at greater risk of institutionalisation. This is as true now as it was in the 1980s and 1990s. As Barry Sheerman, Labour spokesman on social security, said of the proposed ILF(1993) in the House of Commons:
The £500 limit does not make sense economically as, in many areas, residential care is more expensive than that—as [Alfred Morris] pointed out the other evening. The Greater London Association for the Disabled did some research on residential care costs and came up with a sample of figures—£510, £605, £800 and £925 a week. Similarly, the British Council of Organisations of Disabled People found that residential charges at the Royal Hospital Putney […] varied between £605 and £807 a week—again, significantly higher than the £500 ceiling. As a means of saving public money, that ceiling is frankly bizarre and, in our view, will lead to more money being spent rather than less.[xii]
There is no doubt that by disbanding, curbing or removing ILF the government can save money on disability benefits. This has been government practice for decades. Lower expenditure on any benefit shows immediate results in headline statistics. The very creation of ILF, however, show that this policy does not work for the Treasury in the long run.
The government would not have had to create ILF in the first place had it not decided to restrict access to means tested benefits. A person’s needs do not disappear simply because the government no longer recognises them as legitimate. History shows that to destroy ILF now will almost certainly require a new form of discretionary fund – state or independent – in the near-to-medium term.
If the government’s concern is with the welfare of disabled people, it must design a scheme that meets the needs of disabled people. In order to do so, it needs a system which has enough flexibility and discretion to meet those needs – even if this leads to increased expenditure both on grants and on their administration. This has been recognised by governments since the 1940s.
If the government’s concern is with the cost of welfare, it needs to fully analyse the costs both of providing ILF and of not providing ILF. It must heed warnings that cuts to extra-costs benefits and supporting grants may lead to greater medical and care costs further down the line. It is a false economy to cut in one area and end up spending more in another. For instance, although the amount of ‘sick and disabled’ people claiming means tested benefit fell from 1987/88 to 1988/89, by 1993/94 it had surpassed the 1987/88 figures. This was because existing benefits were not paid at a high enough level to keep disabled people above a subsistence income.
[i] HC Deb 08 June 1988 vol 134 c594W.
[ii] Roy Griffiths, Community care : agenda for action (London: H.M.S.O., 1988).
[iii] Department of Health and Social Security, Reform of social security. Programme for action (Cmnd. 9691, 1985).
[iv] Alfred Morris, ‘Closing a Door Marked Disabled’, The Times, 4 January 1988, p. 10. See also: Social Security Act 1986
[v] Supplementary Benefit ceased on 11 April 1988. ILF began operation on 8 June 1988.
[vi] HL Deb 01 March 1988 vol 494 cc97-8. See also HL Deb 03 March 1988 vol 494 cc302-304 and HC Deb 09 February 1988 vol 127 cc170-2.
[vii] HL Deb 03 March 1988 vol. 494 c. 303. Nicholas Scott, Minister for Disabled People, had announced in the Commons that ‘We are talking of hundreds, rather than thousands, of disabled people, and we shall be seeking to meet their needs in as flexible a way as possible’. HC Deb 09 February 1988 vol 127 col 172.
[viii] HC Deb 15 March 1993 vol 221 col 39.
[ix] Disability (Grants) Act 1993.
[x] William H. Beveridge, “Social insurance and allied services,” (1942).
[xi] See Anne Borsay, Disability and Social Policy in Britain since 1750 : A History of Exclusion (Houndmills, Basingstoke, Hampshire; New York: Palgrave Macmillan, 2005); Michael Oliver and Colin Barnes, Disabled People and Social Policy : From Exclusion to Inclusion (London; New York: Longman, 1998).
[xii] HC Deb 15 March 1993 vol 221 col 54.