Former recipients of the Independent Living Fund (ILF) in England experienced a loss of support, a greater reliance on unpaid care and an “adverse” impact on their physical and mental health after its closure, according to a government report.
The research, published by the Department for Work and Pensions (DWP), confirms many of the warnings and concerns raised by disabled activists who campaigned against the decision to close the fund, before it shut in June 2015.
Researchers only spoke to 50 former ILF recipients – or their relatives – out of nearly 17,000 disabled people with high support needs that the fund had been helping to live independently at the time it closed.
But they concluded that those former recipients who saw their support “heavily reduced” as a result of the closure – which saw non-ringfenced funding passed by the government to local authorities – “experienced multiple changes” to their lives.
The report says: “They argued that reductions in care were unfair and denied them opportunities to participate fully in society.
“They encountered changes and restrictions to daily activities, including less support for engaging in leisure activities, work and volunteering.”
Among those changes, they experienced a loss of paid care and support, an increased reliance on unpaid care, and less support for engaging in leisure activities.
Some of those who took part in the DWP study said that the “heavy reduction in care” they had experienced had damaged their physical and mental health, with effects such as loneliness; weight loss; and frailty “due to worry, or due to the physical demands of having to perform everyday activities without the support of a carer”.
Last September, a report by Inclusion London – One Year On: Evaluating The Impact Of The Closure Of The Independent Living Fund – concluded that there had been vast differences in the proportion of former ILF recipients whose packages had been cut after the fund’s closure.
In one borough, 68 per cent of former ILF-users had had their support reduced, a year on from the fund’s closure, while in all about 185 former ILF recipients in London – about one in seven – had had their care packages cut, the Inclusion London report found.
Former recipients interviewed for the new report said they found council accounting procedures and spending rules to be “more restrictive” than under ILF, with some of them reporting how their level of choice and control had been “compromised” by its closure.
The report says: “Former recipients had to prioritise their needs, typically prioritising personal care and attending medical or official appointments over social activities and participating in activities outside their home.”
Some had to stop volunteering or even give up paid employment.
One told researchers: “I won’t be able to make myself any food without help, so basically they’ll just help me to get up in the morning… what am I meant to do in the daytime?
“I don’t want to be a prisoner in my own house. I’ve got a mobility car outside but I can’t drive it without a driver.”
Only one of the 50 former ILF-recipients who was questioned for the study had been moved into a residential home, but the researchers pointed out that they may not have reached other former ILF recipients who had been forced into residential settings.
Some of those they interviewed had been told by social workers during the reassessment process that they “could move into residential care as a cheaper alternative to living in the community”.
Some of the participants in the research described the process of being reassessed for their support needs by their local authority as “smooth”, but others said the transition period was “acutely stressful” and “taxing and detrimental to their wellbeing”.
One former recipient described how their social worker had told them: “Well, our criteria is different. We look at survival, the ILF look at qualify of life.”
Participants in the study said they experienced “an overall sense of sadness and loss” once ILF’s closure had been announced in 2014, with one participant in the study saying it had felt “like running into a brick wall full pelt”.
The research did find that the transfer of funding from central government to local authorities had been “smooth”, with former ILF-recipients experiencing “no major disruptions to receiving payments”.
And those former recipients who had been awarded an improved, matched, or slightly lower support package told researchers that they had maintained the level of support and care they received before ILF closed, and had a similar level of choice and control over their care.
This group also reported limited or no changes to their independence.
Pictured: Disabled activist Paula Peters at one of the many protests aimed at preventing the ILF closure