Please Don’t Save the Independent Living Fund

The Independent Living Fund (ILF) has supported people with high support needs since 1998, currently 17000 users, with the original aim of keeping people out of residential care in a very different environment to the one we have now. In 2007 an independent report was prepared that raised serious concerns to the running of the fund and recommended in the long term that the fund was a duplication of the current provision provided by local authorities and should be disbanded. The minister for disabled people at the time, Anne McGuire, ducked the issue and it was left up to the coalition government to do the necessary dirty work.

So on 30th June 2015, the fund will close and the monies will go to Local Authorities to distribute, and in Scotland, they plan a ‘Scottish ILF’. The decision has clearly frightened many users and caused fierce opposition by some. There has already been one judicial review, and appeal, to try unsuccessfully to stop the closure, with another one in the pipeline, using the law to overturn democracy. The main opponents to the closure are Disabled People against Cuts, a militant group that tried to unsuccessfully occupy Westminster Abbey last Saturday (28th June) in an old fashion attempt at protesting.

Their message is ‘Save ILF’, and my message to that is ‘Please don’t’. While I am an ILF user who has indeed benefited from the funding to my support package it has provided me, I know there is a darker side to the fund. Ten years ago I had an extremely intimidating assessment involving a member of its senior staff that took years to unpick and caused me severe stress that resulted in my life taking a downward spiral that took me many years to recover from. I accept it was an unusual situation but it turned be into the ‘Mastermind champion’ of how the fund operates, as I read all its policies cover to cover many times over.

My first observation is that because the fund has so far been very relax in its assessment process, because it has not had to manage a reduced budget in its history, if the fund remained open and had to make cuts, it would find it impossible to do so as it does not have any existing eligibility criteria or means to prioritised. With designing a process taking months and a need to cut immediately, the fairest thing it could do is cut everyone’s support by a fixed percentage regardless of need. Because the fund is discretionary and outside any social care law, there would be little anyone could do about it. The reality is local authorities have more experience managing limited resources within a legal framework.

My second observation is I am not convinced that the fund delivers independent living within 2014 expectations. Not being in residential care is no longer a suitable benchmark to the full inclusion of disabled people. Self Direct Support seems to be a better benchmark and in May, I submitted a FOI request to ask who managed individual’s budgets. It was shocking to hear only 28% of users managed their own support and 38% was managed by parents. While I am not suggesting all parents are restricting user’s choice and control, it is something I feel needs researching as it does not fit into how some activists are portraying ‘ILF Users’. Another shocking statistic is the employment rate, building in all the barriers to employing along with the independence the fund supposedly provides I would be happy to estimate a conservative figure of 20% or even 10%, the actual figure is 1.67%, I am certainly in a minority as a user who works!

My last of many points I could mention on this passionate issue is that Disabled People Against Cuts fears supposedly that ILF users will end up in ‘institutions’, painting a picture of 1970s long stay hospitals with big dorms and little dignity. The reality is that they do not exist, and I do not think any council has the money to build and staff them, even if they were legal to operate. Residential care is very different nowadays and more importantly in decline. If ILF users are going to face a reduction in the support hours they receive, they are more likely to be provided a tele-care solution to meet their outcomes in a more cost effective manner.

The bottom line is I think the fund is elitist and activists should have been spending the last few years working the councils, as I have tried, to build a better system for everyone, not protect the needs or wants of a few at the cost of the many. I could explain forever my concerns and I want a better debate on the fund, as oppose to just seeing the fund with rose-tinted spectacles, simply bolted-on to the anti-cuts campaign.

from Simon Stevens


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