The Independent Living Fund was originally set up in 1988 as a transitional arrangement to support severely disabled people living at home. This came about following changes to the old benefits system which put people at risk of losing some ‘domestic assistance allowances’. It was an independent charity, albeit funded by government and, after its initial five year period, had become established. It proved popular and many people with learning disabilities used it to live independently. It was the precursor to direct payments which people could use to employ their own support; indeed, in some ways it was more advanced as, unlike direct payments, if you moved, the fund moved with you.

Effectively barred
As word spread, more people applied and inevitably the money ran out. In 1993 a new fund was set up for new applicants. Old applicants were retained but new ones had to keep to a restricted budget. These changes hit many applications from people with learning disabilities as they effectively barred people who had received long stay hospital ‘care’; money for them was transferred to local authorities which locked them into the funded model of residential homes.

But for many of those who did qualify it proved an invaluable lifeline. The fund continued for a few years until the next crisis at the turn of the century. The organisation had come under a lot of criticism. They were accused of discriminating against other groups of people as well as people with learning disabilities and for not being transparent about who was entitled to what, how decisions were made and how much you should get. They also came under fire for their complex rules, difficulties with different criteria about charging and many other areas.

These issues and many more were looked at in a review in 2006 by Henwood and Hudson (www.tinyurl.com/ilfreview).They concluded that ‘doing nothing is not an option’ but existing users had to be protected. The organisation was brought under the wing of the Department for Work and Pensions (DWP) as a Non-Departmental Public Body. In 2006 it was still only paying some 18,000 people. Other changes to social care funding were happening, such as individualized and personal budgets, that brought funding streams together.

Whilst the ILF had survived by the skin of its teeth following the review, its future was still far from secure, perhaps rightly so. Then the ILF faced another funding crisis. It was inevitable it would experience greater demands as local authority budgets were cut and other sources of money were sought. As awareness of the opportunities of the ILF grew more people were supported to claim and applications rose once again to
unacceptable levels. In 2009, it was decided to restrict funds yet again.

New hurdle
Again, existing claimants were supported but fresh criteria were drawn up for new applicants. A new constitution made this easier to accomplish although there was a new hurdle to overcome as they were under DWP’s wing. This meant an Equality Impact Assessment had to be carried out following the Equality Act in 2010.

This is designed to ensure that equality, social inclusion and community cohesion issues are considered when drawing up policies or proposals. The assessment was done and showed that the proposal to restrict the fund to people working over 16 hours a week may well disproportionately affect some groups of people. The ILF merrily went ahead with the change with little or no consultation with the public or other interested areas of government.

This decision seems to have been implemented with a staggering disregard for the group of people least likely to be in work, especially paid work over 16 hours a week, ie. people with learning disabilities.

It is significant that the new eligibility is based around work, influenced no doubt by the ILF’s new paymasters the DWP. Or perhaps there are not enough people with learning disabilities on Equality 2025, the Office for Disability Issues’s, forum. Disability consultant Simon Stevens is calling for the ILF to be renamed the Independent Working Fund. What will cause immediate confusion is the difference between the new ILF and the Access to Work fund. Surely their paths cross too closely?

Meaningless
If all these funds are merged into Personal Budgets perhaps this would not be a cause for concern. But there are several arguments that suggest it is important:

• Nothing is clear yet about Personal Budgets and what is in or out.

• If Personal Budgets are based on current criteria that would
discriminate against people with learning disabilities from the start.

• Big changes in how social care is organised should be the subject of a consultation that does not appear to have happened. In the current
climate that does not set a good precedent.

• More importantly, Equality Impact Assessments (EIAs) were brought in to prevent discrimination. If they are just a paper exercise that can be disregarded they are a meaningless waste of time and might as well be one of the coalition government’s cuts.

When I sought views on this issue, I found others were starting to be concerned. Anne Williams, Valuing People Now director, could not comment due to the election block. However, Karyn Kirkpatrick, the National Housing Lead, was able to say: “I can advise you that VPN and DH are aware of the issues and are in cross-government discussions. We are happy to receive any evidence that demonstrates the impact of the
changes to ILF.”

The Learning Disability Coalition say they are planning a campaign to have the eligibility criteria reinstated within the first 100 days following the election. They were intending to lobby newly elected MPs in the week commencing 10 May with case studies of people who have benefited from the ILF or have tried to apply but have been affected by the changes.

Complex legal issues
Nick Gradwell of the Equality and Human Rights Commission (EHRC) said, “The matter is now being referred to one of our legal groups who will then indicate what action we may take. In the current environment, it is obvious that EIAs are going to be vital for proper considerations of this type. In this case an EIA has been done which recognises the adverse impact for some but the legal issues arising are complex”.

Under the new administration, action on this issue is likely to be delayed but, given the seriousness of the wider issues involved, I hope pressure from the EHRC will introduce some urgency.

This issue is one of the first to be discussed on a new forum allowing instant access and comment.

Go to: www.ldforum

Andrew Holman is Director of Inspired Services