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Discussions with people affected by the closure of the Independent Living fund

Penny Pepper

 

Photo: Penny Pepper by Charles Shearer at snapsthoughts

The three videos on this page feature people who will be directly affected by the government’s atrocious recent decision to close the Independent Living Fund (the ILF).

The ILF was set up in 1988 as a standalone fund which people with severe disabilities could apply to for extra money to pay for added carer hours.

That additional funding made it possible for people to pay for enough care to continue to live independently in their homes, rather than in residential care. The ILF paid for entire care packages for some people. For others, ILF money was used to top up council funding for care (the care packages for all three people below are part-funded by the ILF and part-funded by their local councils). Two of the people who appear in these videos require round-the-clock care support which – unsurprisingly – does cost money. And so what if it does? - care support is worth financing, as you'll see in from the videos.

In 2010, the Independent Living Fund was closed to new applicants. Then in 2012, the coalition government announced that it would “consult” on the future of the fund for the ILF's 19,000 existing users. The upshot of this was, towards the end of last year, an extremely unpopular decision to close the fund and devolve it to local authorities.

The money will not be ringfenced. It will be left to already cash-strapped councils to fund care for people with the most complex – and expensive – needs. That prospect is dire in the current council funding "environment." Councils can’t meet demand as it is. Many are tightening eligibility criteria for care. Our own FOI numbers, reported in the Independent last year, showed that more than 7000 disabled and elderly people had lost some or all of their state-funded support after cash-strapped councils changed their rules on who qualified for social care. Councils have already been taken to court for trying to restrict care services, or for increasing charges for care, or capping the amounts that they spend on claimants.

Last year, as another example of an attempt at spending restrictions, Worcesterchire county council came up with a so-called maximum expenditure policy (Spartacus has very good detail on this). That policy meant that if the cost of paying for someone to live independently at home with carers was more than the cost of residential care, that person would either have to make up the difference themselves, or go into residential care – the sort of retrograde approach which would, as Sophie Partridge says in her video below, take us all back to a time when people were hidden away in homes and made to sit around in incontinence pads.

So much for the advance of civilisation. Little wonder that DPAC calls for adequate, ringfenced funding - from general taxation and national insurance contributions - for independent living/social care support.

Sophie Partridge

In this video, Sophie Partridge - a freelance creative practitioner from Islington and a long-term ILF recipient - talks about the realities of requiring round-the-clock care.

She explains that having PAs (carers) makes it possible for her to live a busy and productive life like everyone is entitled to. She also talks about why she refuses to contemplate being forced into residential care if she loses funding for carers - if, in future, her council can't make up the proportion of her care package that the ILF currently pays for: “We can't go back 30 odd years. It's just not going to happen...Even if they deported us all tomorrow into some sort of home, homes don't provide those levels of care.”




 

Gabriel Pepper

In this interview, writer Gabriel Pepper talks about the effort that he's having to make to convince MPs to sign early day motion 651 - an EDM which calls for the government to "look at ways of expanding the Independent Living Fund to provide needs-based support to all adults in the UK who require it." He's also part of a group of ILF recipients who will take a legal action to the high court on 13 and 14 March to challenge the ILF closure decision.

Pepper, who is 41 and began his working life as an archaeologist after completing a Phd, has had three brain tumours. He has sight, speech and mobility impairments. The ILF pays for a proportion of his care. His view on fighting for the fund in court: “I don't believe the Tory party will ever hang their heads in shame, because they don't have shame, but I believe that it can be shown that they're not above the law.”
 


Penny Pepper

In this video, Penny Pepper - an Islington journalist and writer who has been receiving ILF payments for about 15 years – gives her views on the planned ILF devolution. Like Sophie Partridge, Penny Pepper requires 24-7 care support. Islington council funds just over half of that and the ILF pays for the rest. She believes that an independent funding structure like the ILF – run by people with disabilities themselves – is crucial to ensuring funding for people with complex needs.




 

Like Gabriel Pepper and Sophie Partridge, Penny Pepper says that she has found the political response (or lack of it) to the ILF closure extremely discouraging. You'll see in the video that she's particularly disappointed with the response from Emily Thornberry, who is her local MP (we've asked Thornberry for her views on her representation of people on this issue and had nothing back. Will keep you posted on developments if there are any). During the interview we had with her, Penny Pepper read a letter about the ILF closure which she'd received from Thornberry - a letter that she said "doesn't have any balls."

Sophie Partridge was angry as well, as you can see at the start of her video:

“What really pisses me off," she said, "If is that sometimes I feel - whether it is Camden or Islington [councils] or whoever - disabled people get used as pawns against whoever is in power. It's like - "It's not our fault. It's the government's." And yeah - of course it's all coming from the top, but they [councils] don't do anything positive. They just sort of wring their hands and say “What can we do? What can we do?” Well - you do something.”

The lack of information that councils appear to have – or, at least, are prepared to release - about their upcoming ILF responsibilities is purely amazing. Islington council (which part-funds care packages for Sophie Partridge and Penny Pepper) told us that it couldn't predict whether or not it could match ILF funding, because the council “did not yet know the total amount to be devolved to local authorities.” Neither did the council know if it would need to fund extra staff, saying: “we do not yet know whether additional resources will be provided as part of the transition.”

The council merely said, fluffily, that it would “always seek to meet people’s eligible needs in an appropriate way within available council resources.” Note that "within available council resources." That is not a phrase to inspire confidence in an era in which council resources are fast disappearing.

Neither was this sentence [from the DWP] cause for hope: “All disabled people, including those transferring from the ILF, will continue to be protected by a local authority safety net that guarantees disabled people get the support they need.”

ILF recipients don't buy that: as we've observed, a group of claimants, which includes Gabriel Pepper, will challenge the government's “consultation” process on the closure in court.

As for the "local authority safety net"... as you'll see in the videos, ILF recipients feel that they stand a very good chance of falling through it. As we've said - an increasing number of councils now only fund people whose needs are assessed as “substantial” or “critical” in Fair Access To Care bands and councils are considering cost caps. Being placed in the “substantial” or “critical” bands is no guarantee that your needs will be met, either - we’ve interviewed people who already struggle for funds to pay for the care they need. This Lancashire woman, for example, who had been placed in the substantial band, told us that she had to stay in bed on weekends, because her care hours didn’t stretch to cover Saturdays and Sundays. This woman in Cheshire had run out of care hours on the day that we visited. She told us that she was regularly put into her pyjamas and prepared for bed by 5.30pm, because her care hours didn't extend into evenings. Her social worker had told her that she would have been a good candidate for extra funds from the ILF - except by that point, in 2011, the fund had closed to new applicants.

This is a very big mess, all right.

The early day motion which calls for MPs to fight the ILF closure is here.

We have more video interviews and photos to add which we'll post when we've edited them.

Videos by
http://www.katebelgrave.com.

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