What future for the Independent Living Fund?

Although the Independent Living Fund has many advocates, its decision to bar new clients from support has put its future in doubt. Gordon Carson reports

The Independent Living Fund has enjoyed widespread support among disabled people with the highest support needs across the UK since its inception in 1988. But, after two announcements on funding restrictions in quick succession and in a political environment dominated by cost-cutting, the future of the Department for Work and Pensions-sponsored fund is being questioned.

The demands on the ILF have escalated in recent years. From a £1.35m budget supporting 890 applicants in its first year, it had grown to more than 21,000 users and a budget of £351m in 2009-10.

As demand outstripped supply, the ILF said in March that applications would be limited from 1 May to clients receiving a minimum of £340 a week in council funding and working at least 16 hours a week, excluding those on means-tested benefits.

However, in less than two months following this, the ILF received about 2,600 applications, equivalent to 60% of its annual average, and could only grant 600. The pressure on the ILF budget was such that in June it said it would refuse all applications for the rest of 2010-11 and not meet the rising costs of existing service users’ care packages.

Eligible applicants were turned away, something the ILF can do as a discretionary fund but had not done before.

Disability organisations worry that this could be a preamble to an eventual closure of the fund. Sue Bott, chief executive of the National Centre for Independent Living, says: “The fund has taken difficult decisions and people are now saying ‘let’s get rid of it’. But if that’s the case we need to have a proper debate about how we fund people with high support needs.”

She raises concerns about any transfer of ILF cash to councils.

“It really makes a difference to local authority budgets how many people with high support needs they have in their area,” says Bott. “If it so happens it’s 20, that can skew budgets and it’s not reflected in the funding that goes to local authorities. People with high support needs should either continue to be funded from a national pot, or the funding that goes to local authorities should reflect the real number of people in that situation. We would be very concerned if the ILF just shuts up shop and all current funding is distributed to local authorities.”

Bott does not want a repeat of the closure of the original ILF in 1993. Two new funds were subsequently created: the extension fund to administer the payments of people who applied from 1988-93; and the 1993 fund for new applications. The latter stipulated that social services should also provide a weekly financial contribution to help support successful applicants. (The two funds were merged in 2007.)

“Money was distributed [in 1993] to compensate local authorities who were expected to make a contribution,” says Bott. “But it wasn’t ring-fenced and the vast majority did not go to disabled people.”

John Nawrockyi, co-chair of the Association of Directors of Adult Social Services’ physical disabilities network, says local authorities would face significant extra pressures if the ILF were to close, as its budget is equivalent to more than 2% of England’s annual adult social care spend of £16bn. He also admits that service users value the ILF because of its independence from local authorities. “If the fund were to cease, that would be a loss in itself,” he adds.

Nawrockyi says the ILF’s future should be considered by the forthcoming commission on long-term care funding.

Despite much support for the ILF, it is not without its detractors. A review in 2007 by consultants Bob Hudson and Melanie Henwood criticised the fact that it operated in parallel to local authority processes but with different rules. Now Henwood says she is aware service users support the ILF because it stands outside council control. But she believes there is “something to be said” for making local authorities responsible for administering ILF money, as long as there is a form of ring-fencing in place.

“It must be possible to set up a system to make it happen,” Henwood says. “We would need transitional protection to make sure no one loses out.”

The ILF’s strategic policy director, John Fuller, admits its future is in question and says the fund’s trustees are considering options that they would like to put to ministers. “Our trustees are determined to find the right model for the future,” he says.

The ILF’s future appeared to have been secured for the next two years by the Right to Control trailblazers, due to start this autumn. Announced by the Labour government, but also backed by the coalition, Right to Control aims to give disabled people choice and control over all aspects of their lives, enabling them to pool direct payments from a range of funding streams.

It will be piloted in eight local authorities for two years and was due to include Access to Work, adult social care, Supporting People and the ILF. But as Community Care went to press, the DWP could not confirm which funding streams would be included.

Marije Davidson, senior policy and parliamentary officer for Radar, says Right to Control should enable authorities to “reduce bureaucracy, save money and plough it into the direct support that disabled people need”. She warns, though, that Radar would “fiercely oppose” any cuts to the overall budget for independent living.

And that is the nub of the problem: how to maintain spending whatever the model of control and delivery used. Even if Right to Control gives disabled people more mastery over their lives, they will still ultimately be affected by any cuts to constituent funding streams, whether they’re called ILF or something else.

CASE STUDY

‘ILF has helped me live independently and go to work’ – Rania Nafeh Multiple sclerosis sufferer and ILF recipient

Rania Nafeh counts herself lucky that she started receiving money from the ILF in 2006, before tighter eligibility criteria were introduced in 2008 and this year.

Nafeh, who has multiple sclerosis and is a long-term wheelchair user, says the ILF is generally delivering an “excellent service for disabled people” and has helped her to live as independent a life as possible.

Before she received money from the ILF, Nafeh depended on direct payments from social services to fund her personal care. However, social services could not provide extra support when she needed it, so referred her to the ILF.

Funding from the ILF helps the west London resident pay for personal assistants, who provide personal care and carry out domestic tasks like shopping. This support also enables her to work 25 hours a week as an information officer at Westminster Action Network on Disability. “When I’m at work my personal assistants can come in and do things at home,” she says.

Although her experience of the ILF is mostly positive, she encountered problems when she wanted to use its payments for physiotherapy and massage to help ease the effects of her condition. But, under the fund’s terms, recipients can only use money to pay for personal care and domestic assistance.

“I need to do some sport to improve my health,” says Nafeh, “but the ILF cannot understand that. They expect service users to contribute from their disability living allowance but I can’t afford to do that.”

Despite this issue, Nafeh still believes the ILF has a valuable role to play, although she says the funding restrictions will hit many disabled people hard. “They need to request more money from the government because many people will be disadvantaged,” she says. “They need that money.”

This article is published in the 8 July 2010 edition of Community Care under the headline “Last hurrah for the ILF?”

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