One of the pioneers of the independent living movement has warned the government that its decision to shut the Independent Living Fund (ILF) in 2015 could force thousands of disabled people out of their homes and into residential care.
John Evans said that such a move, announced last week in a long-awaited consultation paper, would be “disastrous” and would “destroy people both mentally and physically”.
Evans was a co-founder of the National Centre for Independent Living (NCIL) and is now an influential disability rights consultant, a board member of the European Disability Forum, and a member of the National Co-production Advisory Group.
But more than 30 years ago, he was one of the five members of Project 81, disabled residents of a Leonard Cheshire home in Hampshire who negotiated a deal with the local authorities funding them that enabled them to move out of the institution and into their own homes in the community.
Now, three decades later, he fears that he and many other ILF-recipients – all of whom have high support needs – could be forced back into residential care.
He said: “My biggest fear ever since that day has been will I ever return to that. Right now it is looking like a reality.”
Evans said he believed that most of the nearly 20,000 recipients of ILF support were now thinking about this “potential threat”.
Maria Miller, the Conservative minister for disabled people, announced in December 2010 that ILF – a government-funded trust which currently helps 19,700 disabled people to live independently – would remain closed permanently to new applicants, while the packages of current users would be protected until 2015.
But in last week’s consultation paper, the government made it clear that it also wants to close the ILF to existing users from April 2015, with funding passed to local authorities and the devolved administrations in Scotland, Wales and Northern Ireland.
Asked what his message would be to Miller, Evans said: “Realise the potential hazardous consequences of your decisions, look at the long-term impact on the health and security of those people’s lives.
“Would you like to have your money taken away if you were disabled and were being threatened by going into residential care and not being able to live in your own home?”
He said he doubted whether cash-strapped local authorities would pass on all of the funding given to them by the government when it closed ILF.
He said: “I have talked to local authorities. They don’t know what to do. They are struggling with their budgets at the moment. They are having to make cutbacks even before this comes in.”
Like many other recipients, he requires 24-hour care, and uses ILF to top up the funding provided by his local authority.
He describes himself as an ILF “success story”. He has used the funding to live in his own home and work as a self-employed consultant.
Evans said: “ILF liberated many disabled people and was instrumental in getting a lot of disabled people into work.”
He added: “The government says things have changed now and the ILF is out-of-date, but what it is providing support for is not. People like myself have not changed.”
Sue Bott, director of development for Disability Rights UK, said the government must explain how people with high support needs would be funded in the future, and that she doubted whether cash-strapped councils would pass on all the funding given to them.
She also said there was no guarantee that the ILF money distributed by the government to local authorities would be allocated according to the number of ILF-users in each area.
This could mean that those local authorities that had done most to promote ILF to disabled people would find themselves hardest hit by its closure.
Bott said she believed there would need to be a new, separate source of funding for people with high support needs to replace ILF so that people like John Evans were “not faced with the prospect of being incarcerated in residential care”.
She said: “Ironically these people were the pioneers of the independent living movement and now they are being forgotten about and ignored.”
She added: “It is one thing to fight the cuts, but it is totally devastating when your whole life’s work is getting reversed in a matter of a few months.
“I cannot contemplate the enormity of what it would mean. The only comparison I can think of for myself is if I suddenly found myself back in special school.”
She called for the scope of the ILF consultation to be widened, so the government could consider widening the criteria for continuing healthcare, which – with the increasing use of personal health budgets – might provide new opportunities for health funding to be used in the same way as local authority personal budgets.
DR UK will be consulting its member organisations before responding to the ILF consultation, which ends on 10 October.
19 July 2012
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