Disabled people have asked the United Nations to investigate the government’s decision to shut down the Independent Living Fund (ILF).
In a written complaint lodged this week, they say the decision to close ILF to new members in December 2010 – apparently without proper consultation – was a breach of disabled people’s rights under five separate articles (17, 19 20, 30 and 31) of the UN Convention on the Rights of Persons with Disabilities (UNCRPD).
They say disabled people’s life chances have “dramatically fallen” as a result of this decision, while the government failed to monitor the impact of the closure of ILF, a government-resourced trust which helps about 16,500 disabled people with the highest support needs to live independently.
Because the UK has signed up to the UN convention’s optional protocol, individuals can take complaints to the UN’s committee on the rights of persons with disabilities (CRPD), as long as all domestic avenues of appeal have been exhausted.
The government’s decision to close the fund has been the subject of a series of legal actions, protests and direct actions (including an occupation of the grounds of Westminster Abbey, pictured) over the last four years, but the government has continued to argue that the care and support needs of ILF-users are better met within a single care and support system, run by local authorities.
From July, the fund will close for good, and the UK government will pass the non-ring-fenced funding to English local authorities and the Welsh and Scottish governments.
The Scottish government announced last year that it would set up its own ILF, for both existing and new users, while the Welsh government has opted to transfer the funding and responsibility to local authorities, but with conditions attached on how it should be spent, protecting the budgets of existing ILF-users for at least the first nine months.
In England, though, the ILF money will not even be ring-fenced for social care.
The UN committee only has powers to make recommendations to the UK government – if it decides to investigate the complaint – and will not be able to force it to reopen ILF.
The complaint has been submitted on behalf of two disabled women – Nicky Baker and Dr Melanie Wilson Jones – who were both unable to claim support from ILF after the coalition decided to close it to new members in December 2010, without any apparent consultation or impact assessment.
Wilson Jones relies on her husband and her 16-year-old daughter to make up the extra hours of support she needs for evenings and weekends but cannot obtain from ILF.
She originally received ILF support after a brain injury, but that was removed when the progress she made meant her needs decreased.
Her support needs increased again after she sustained a further brain injury in a road traffic accident in 2011, but by then ILF had closed to new members.
Baker, who is a disability equality trainer with Harrow Association of Disabled People and is studying part-time for a degree, would have been eligible for ILF support, but the fund closed the day after she telephoned for an application form in 2010.
The social care package she receives from her local authority does not provide the support she needs to live an independent life.
She told Disability News Service that the fund’s closure was “a real blow”.
She lives with her parents and eventually wants to live independently, but she said: “On the level of support the council would be able to fund, without the support of ILF, the only option would be residential care, which doesn’t appeal to me.
“I can’t look forward and think about moving away from my parents without that level of support. I couldn’t do it. It almost makes me feel I have come to a bit of a stop in my life.”
If she goes on a date with her boyfriend, her parents have to come with her, which she says is “not very cool”.
She also does not have all the support she needs as a member of the Villa Rockets powerchair football team, which plays in the national league premiership division.
The UN complaint has been written by Tracey Lazard, chief executive of Inclusion London, and the case has been financially supported by members of Disabled People Against Cuts (DPAC), with help from the PCS union, and pro bono advice from lawyers, including solicitor Louise Whitfield, from law firm Deighton Pearce Glynn, and barrister Catherine Casserley.
Jorge Araya, secretary of the CRPD, said he could not comment on the Inclusion London complaint because the information was “confidential”.
The committee is also believed to be carrying out a wider inquiry into “grave or systemic violations” of the rights of disabled people by the UK government, but that is also being conducted “confidentially”.
Lazard said: “The closure of the Independent Living Fund signals the end of independent living for disabled people.
“It took many years for disabled people to fight their way out of the institutions and to have the same chances as anyone else to live in the community alongside family and friends.
“At the current time, local authorities are simply not able to provide the level of social care support required to uphold disabled people’s fundamental human rights.”
Sophie Partridge, a current ILF-recipient, said: “The ILF has played a huge part in supporting me to have equal access to an independent adult life and a level playing-field alongside non-disabled people.
“Without the ILF being re-opened to new applicants, I worry that young disabled people will never get the same life chances as I have had.”
Linda Burnip, co-founder of DPAC, said the complaint had only been possible because of “pooling of resources and collective solidarity”.
She said: “Since the closure to new applicants in December 2010, disabled people who missed out on the ILF have suffered dramatically worse outcomes than existing ILF-recipients with equivalent support needs.
“We are not just talking about disabled people no longer being able to go to work, or ever have a holiday or go to university, we are talking about people unable to leave their homes, left without access to food or water, unable to go to the toilet and unable to wash more than a couple of times per week.
“We know there is also an urgent need to address this inequity, but do not believe that the right answer is to level everyone down to the lowest levels of support.”
One disabled activist and ILF-user criticised the decision to lodge a complaint with CRPD.
Disability issues consultant Simon Stevens said he thought the complaint was “unlikely to result in any change” to the government’s decision to close ILF, particularly as the Labour party was not committed to keeping it open.
He said: “I think at this stage, DPAC and other organisations should be supporting users to engage effectively with local authorities for a smooth transfer.”
He has written an article, shortly to be published by Access Magazine, which offers advice to ILF-users on negotiating assessments for their new local authority-funded packages.
He said: “I am openly inviting other users and families to contact me if they have specific questions and concerns that I could help with.
“I am not suggesting I have all the answers or I am super special but I genuinely wish to be a listening ear for users who are less confident about the process.”
A DWP spokesman said: “In December 2014 the high court dismissed an application for judicial review and upheld the government’s decision to close the Independent Living Fund.
“This government is absolutely committed to supporting disabled people and we continue to spend around £50 billion a year on disabled people and their services.
“The way disabled people are supported to live independent lives has changed significantly over the last 20 years.
“The government’s decision, which means that all the care and support needs of ILF-users will in future be met within a single care and support system, reflects these advances in the mainstream adult social care system.
“That is why we are transferring more than £260 million of the ILF’s budget to local authorities and the devolved administrations to ensure disabled people get the targeted support they need to live independent lives.”
Meanwhile, a prominent ILF-user is to “celebrate” the 61st birthday of work and pensions secretary Iain Duncan Smith on 9 April by travelling the 14 miles from the House of Commons in her powerchair to deliver a “very special birthday card” to his constituency office in Chingford, east London.
Mary Laver, an ILF-user for 25 years and a member of the Conservative party, has previously travelled from Land’s End to John O’Groats in her powerchair.
She wants to deliver the card, with the help of her support team, to Duncan Smith, because she says he is the man who is “going to imprison me in my own home for the rest of my life without a parole or right to appeal” by closing ILF, which has helped her live an independent life for the last 26 years.