Not content with removing the Independent Living Fund (ILF) for disabled people, councils are now insisting that previous recipients who have had their care package cut should be monitored during some of their most intimate moments to gauge the impact of those reductions.
Understanding the ILF
Before its closure in 2015, the ILF used to provide financial support to around 18,000 disabled people – generally speaking, some of the most disabled people in the country. It was designed to help these people to live in their own homes within the local community, rather than being placed in residential care. It was closed because the government deemed that this support should fall to local councils, who are already responsible for other benefit payments.
At the time of the closure, disabled people protested the decision with the insistence that closing the fund would do more harm than good. One year later, their pleas feel more relevant than ever.
During Disabled People Against Cuts (DPAC)’s week of action during the 4th-10th September, a report by the group Inclusion London was launched entitled ‘One year on: Evaluating the impact of the closure of the Independent Living Fund’. The findings are absolutely damning.
These include the existence of a “postcode lottery” in the levels and quality of care for former ILF recipients, impacts to health “ranging from distress and anxiety to removal of essential daily support” caused by ILF closure and a “lack of consistent practice” when dealing with referrals to continuing healthcare funding.
In four local authority areas in London, more than half of former recipients have had their care packages cut. One of the speakers at the launch, Jane*, is one of them – but her problems haven’t stopped there.
With ILF, Jane was able to receive 84 hours a week of care, with 35 hours paid by the council. This enabled her to receive almost round-the-clock care, and helped her live a fulfilling life in her community.
Then, the council tried to reduce those hours from 12 a day down to just three a day. Eventually, they settled on a reduction of 46 hours a week.
To make up for the shortfall in her care, the council have suggested she eat microwavable meals and wear incontinence pads for 12 hours a day. She said:
It was bad enough when they suggested I use nappies, incontinence pads; to feel so violated in the name of saving money.
But as she described, the council have later added insult to injury with their latest request.
Now that they have imposed cuts to Jane’s care, the council want to send a team over to observe the impact these cuts will have. This will mean observing her as she uses the toilet, feeds herself, showers, gets in and out of bed and in and out of her wheelchair. She said:
That really breaks me. I can’t bear the thought of having a team of people invade my privacy, come to my toilet, my bedroom.
This would be a terrifying prospect for anyone, but Jane is also a survivor of sexual, physical and emotional abuse. Having people she doesn’t know in her space during her most intimate moments will feel like nothing short of a violation:
I must accept this incredible, humiliating, dehumanising invasion of my privacy & home, this stripping away of every last vestige of my dignity.
With the Conservative government’s policies having already been criticised by the UN Human Rights Commission for their impact on disabled people, it’s little wonder that people like Jane are impacted the way that they are.
But as protests like DPAC’s this week show, there’s a way to go yet before the government are willing to listen.
*Jane’s name has been changed
How You Can Help
- You can donate to the DPAC legal fund helping former ILF recipients like Jane challenge cuts to their support packages
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