"Have you ever thought that Apartheid was wrong? Have you ever thought that Homophobia was wrong? Have you ever thought that Sexism, Racism, Fascism, was ever so wrong? Well so is this"
Independent Living Fightback
The ILF supports disabled people with the highest support needs to live in the community when residential care would be the alternative.
Through support from the ILF disabled people can contribute and participate in:
- Education, volunteering and employment
- As employers of Personal Assistants paid for through the ILF
- A friends, family and active members of their communities
The closure of the ILF will have a grave impact on disabled people resulting in disabled people being prisoners in their homes, unable to carry on in employment, losing their skilled and trained Personal Assistants and taking away their employment, or being forced into residential care against their wishes.
The closure of the ILF signals the end of the right to independent living for disabled people and the return to a segregated society where disabled people are warehoused away and denied basic human rights.
- Disabled people are calling for the Independent Living Fund to be kept and re-opened, following the example in Scotland where the Scottish government has announced that for 2015 – 2016 they will retain the ILF and open to new applicants.
- The ILF is a model of social care provision that works. The ILF annual report for 2014 shows just 2% of the budget is used for overheads and despite the upheaval over the past year with the government’s announced closure, the ILF has a 97% satisfaction score among its recipients. At a time when local authority administered social care is struggling, the ILF is improving in performance and productivity year on year.
- The mainstream care and support system, to which the government is proposing to transfer responsibility for meeting the full support needs of current ILF recipients, is in crisis and cannot cope. Pressure on local authority budgets has led to £2.8 billion being cut from the social care budget since 2010 whilst in the past 5 years 97,000 disabled people have lost social care due to the tightening of eligibility criteria. We have examples of current ILF recipients being told by their local authorities that after the closure of the ILF they will lose their support.
- Without the ILF the UK will be unable to fulfil its obligations towards upholding the right to independent living for disabled people, and will result in disabled people becoming prisoners in their own homes or forced into residential care against their wishes
Who we are
Save the ILF is a campaign led by ILF recipients and disabled people with support from a national network of Disabled People’s Organisations and campaigns including Inclusion London, Disabled People Against Cuts, and Greater Manchester Coalition of Disabled People among many others, with a combined reach of around 45,000 Deaf and disabled people across the UK.
Why the closure of the ILF is so important
Currently 17,500 disabled people with the highest levels of need receive essential support through the ILF enabling them to enjoy fulfilling lives and contribute to their communities. The closure of the Fund will have a devastating impact on the lives of these individuals and their families. It also has a much wider significance that affects all of us because at the heart of this issue is the fundamental question of disabled people’s place in society : do we want a society that keeps its disabled citizens out of sight, prisoners in their own homes or locked away in institutions, surviving not living or do we want a society that enables disabled people to participate, contribute and enjoy the opportunities, choice and control that non disabled people take for granted?
What is the ILF?
The Independent Living Fund (ILF) was originally set up in 1988 as a national resource to fund support for disabled people with high support needs, enabling them to live in the community rather than move into residential care.
Through support from the ILF disabled people are active in society:
• In education and employment
• As volunteers and Trustees
• As employers, often of sizeable teams of Personal Assistants
• As carers for family and friends
“Before I was referred for funding from the Independent Living Fund I lived without having my most basic needs met, spending hours unable to have a drink or go the toilet, without dignity and without any quality of life, existing between TV and hospital. I spent weeks at a time in hospital going from one health crisis to the next…Through support from the Independent living Fund I have been enabled to go back to University and to enter employment…I am paying into the system in 2 ways – as a Trustee of a charity – and as an economically active tax payer, thanks to my paid work. Additionally, 7 other people are economically active through their employment as my Personal Assistants. In terms of saving money to the state you can also count on the fingers of one hand the number of hospital stays I have had since receiving ILF funding – and all but one of those stays were planned…Unfortunately in my job I see many people who are suffering the dreary lifestyle that I had once had as they have missed the chance to apply for ILF funding. One client says that she feels she is treated “worse than a dog – at least dogs get taken for a walk every day” – as she spends all but a couple of hours a week in bed. She doesn’t have a package flexible enough to have someone around to help her back to bed when her muscles no longer allow her to maintain her position in her wheelchair. The hour that she can spend in her chair, while the care worker is doing housework, she drives from room to room like a caged animal “just to make sure the other rooms are still there”! ILF recipient
Background to the proposed closure
The ILF model was ground-breaking, giving disabled people funds with which to directly buy their own support. As a consequence of the popularity of the Fund eligibility was tightened over the years. Although developments in the delivery of local authority administered care and support were informed by the success of the ILF , mainstream care and support has never been able to replicate the higher satisfaction rates, lighter touch monitoring or considerably lower overheads that the ILF operates with .
A review in 2007 carried out by Melanie Henwood and Bob Hudson recommended expansion of the ILF to widen eligibility. It also pointed to the possibility that the development of Personal Budgets would remove the need for the ILF to operate in the long term on the assumption personal budgets would be able to deliver the same levels of choice and control as the ILF.
In December 2010 the Government announced the closure of the ILF to new applicants, and in December 2012 following a consultation on the future of the Fund that disabled people claim was inaccessible and carried out in bad faith, it was announced that the Fund would be closed permanently from April 2015. The Government claimed that Local Authorities could meet the same outcomes as the ILF and proposed transfer for existing ILF recipients to their Local Authorities.
A group of ILF users successfully challenged the decision to close the fund and The Court of Appeal ruled in November 2013 that the closure decision had breached the public sector equality duty because the Minister had not been given adequate information to be able to properly assess the practical effect of closure on the particular needs of ILF users and their ability to live independently. The Court of Appeal judges were unanimous in their view that the closure of the fund would have an ‘inevitable and considerable adverse effect which the closure of the fund will have, particularly on those who will as a consequence lose the ability to live independently. ”
However, on 6th March 2014 the Minister for Disabled People announced his intention to press ahead with the closure of the Independent Living Fund on 30 June 2015. A fresh legal challenge by ILF recipients was issued last week on the same basis as the first that once again the Minister had not discharged the public sector equality duty because he did not have adequate information to be able to properly understand what the impact of closure would be on the people affected.
The impact of closure
Under the Government’s proposals responsibility for meeting the full social care needs of the ILF recipients will pass to local authorities. Transition funding to accompany these new responsibilities has only been secured for 2015-2016. There is no currently no guarantee for any further funding.
Transition funding will not be ring fenced for social care once it is transferred to local authorities, and so even within 2015-2016 there will be no guarantee that this money will be spent on supporting disabled people to live independently rather than absorbed into the broader council budget.
The emphasis for 2015-2016 will on supporting ILF users to transition onto more limited social care packages. This could mean having to lower the rate of pay and hours they employ Personal Assistants and risk losing trained and experienced staff, having to choose between spending days warehoused in a day centre or trapped and isolated at home without support to eat, drink or use the toilet for hours at a time, or being forced into residential care against their wishes.
ILF recipients will only be eligible for continued social care support from their local authority if they meet the FACs criteria. The new Government’s intention to set the new national eligibility threshold at ‘substantial’ means that many simply will not receive any replacement support from their local authority once the ILF closes.
“I am 28 years old, I have JIA (Juvenile Idiopathic Arthritis) I have had this condition for more than 14 years. The condition varies from day to day with good days and bad – bad days I need support to do the most basic of tasks… I met with my local care manager from social services recently who informed me that once ILF closes my care package will be reassessed. I was also informed that my husband and family members would be expected to help meet my care needs as in their opinion I will not qualify for care…Losing ILF will put a massive strain on my marriage and my family relationships. My husband works away a lot, which will mean he will have to change jobs to meet my care needs in a time where unemployment is a real problem. We had started planning for children in the near future but without ILF support I will not be able to do that. I have found it extremely upsetting having to tell my PA of six years that I will no longer be able to employ her. She is the best PA I have ever had and she knows my routine as well as understanding my illness and we work really well as a team. I hate the fact that this is not in my control or my choice. By removing ILF I am being stripped of my independence, of my choice and control”. ILF recipient
“I was told that when the ILF funding was transferred to the LA there was not going to be enough money to go round and as what money the LA did get it was not going to be ring fenced so therefore could be spent anywhere not necessarily on care. Therefore my care package would be substantially cut and there would be no overnight care provided, I said that I could not cope without the night care and described my needs during the night and the agonising pain I suffered and the assistance I need through the night… I received a shrug of the shoulders and they walked out. My son and I were left in a state of shock which only gets worse as the time goes on”. ILF recipient
A loss in support following the closure of the ILF will have a serious detrimental impact on the lives of current recipients who will find it harder to live independently, will be unable to stay in employment, family relationships will breakdown and their health will deteriorate.
As detailed above the Court of Appeal judges were in no doubt as to the detrimental impact closure of the fund will have, with Lord Justice Elias referring to “the inevitable and considerable adverse effect which the closure of the fund will have, particularly on those who will as a consequence lose the ability to live independently. ”
Without the ILF the Government will be in breach of Article 19 of the United Nations Convention on the Rights of Persons with Disabilities to independent living.
Arguments against closure
The Government argues that retaining the ILF means operating a two tier system and that closure is necessary in order to provide equity across disabled people following the closure to new applicants in December 2010.
Levelling down and ending independent living support for all disabled people with high support needs is not the answer.
The Government says that provisions in the Care Act 2014 will enable Local Authority administered social care to fulfil the same outcomes as the ILF.
Under-funding in social care will severely limit the difference that the Care Act can make:
• Pressure on local authority budgets has led to £2.8 billion being cut from the social care budget since 2010.
• A recent survey showed that:
o 40% of disabled people said that social care services don’t meet basic needs like washing, dressing or getting out of the house.
o 47% of respondents said that the services they received do not enable them to take part in community life.
• In the past 5 years 97,000 disabled people have lost social care due to the tightening of eligibility criteria.
The Government claims that the mainstream social care system has been managing to meet the needs of disabled people since December 2010 and there is no evidence of any problems being encountered as a result of the closure of new applicants.
Although there has been no monitoring of the situation by Government at either local or central levels, there is mounting evidence of substantial disadvantage experienced by disabled people with high support needs who missed applying for the ILF.
In the Equality Analysis accompanying the Government’s latest decision to close the ILF, the Fund is described as replicating support available through other schemes including Disabled Students Allowance and Access to Work.
In fact neither of these schemes provides personal assistance support, for example to get ready to go to work or college or to go to the toilet while you are there. Furthermore both DSA and Access to Work are facing major changes that will reduce the support they can offer.
LH has had severe arthritis since she was two years old – so now, at 51, that’s been 49 years with a degenerative illness leaving her with limited use of all her joints in her body and largely reliant on an electric wheelchair for mobility. “I have days and nights when I can wake up and I am very, very shivery, although I have a raging temperature. I feel so unwell I have nearly rang an ambulance on numerous occasions”. LH quotes, “ when I have these days, I don’t like to be left on my own, because I’m often sick and very weak and prone to falling. Rheumatoid Arthritis is a disease that can flare up at any time. I woke up like this, this morning.” One of her flare ups was so severe she did not even have the strength to flush the toilet. She is on her own now, though, because “I’ve only got about six hours’ care a day”. LH has to get ready for bed at 5.30 pm most evenings as she does not have enough care hours for a carer to return later in the evening. LH quotes “I hate getting ready for bed so early especially during the summer months”. LH’s problem is her condition has deteriorated further and the closure of ILF has had a detrimental effect on her life. LH describes her local authority as “very supportive” but “my local authority keeps declining additional care hours”, despite meeting their criteria of critical and substantial high level of care.LH has put her heart into her local authority home – she’s made it retro-bright and beautiful – and she hates the idea of being forced out of it and into a care home. Keeping her independence means battling for money for extra care hours (the local authority have recently turned down her application for more hours) and she juggles carefully the funds for care she has. Often alone and struggling.
“I heard about the ILF a year prior to going to university so I thought that I could use it to help pay for the room. I was shocked to find out that the fund had been stopped that year. As a result of that, it became very difficult to pay for the carer’s room. A charity kindly helped to pay for half the cost of the room, and it was very stressful trying to find payment for the other half. Eventually I had to use my student loan to pay for the other half, when it should have been used for other expenses…The absence of the ILF also meant not having enough money to pay for the amount of care that I at needed at university. My PA had to live with full time, but my local authority did not give me enough care hours. If I had the ILF it could have helped to pay towards my care. Due to the local authority’s refusal to pay for the carer’s room and refusing to give me extra hours, my mum had to help with my care at the weekends to give my PA a break. This was frustrating for my mum and I because she had to drive down to the university every weekend, when she also the main carer for my Grandmother who has dementia. This made me very angry because I felt that I was not having the full university experience since I had to rely on the help of my mum a lot. Having the ILF could have made life a lot easier and stress free for my family and I. This in effect contributed to extra financial worries during my time at university”. Disabled person who missed the ILF
The ILF is a vital, cost effective and proven form of delivering support that transforms disabled people’s lives.
1. The ILF should not only be retained for existing recipients but re-opened to new applicants as the Scottish government have committed to.
2. That an independent living task force should be set up co-produced with ILF users, to review independent living and specifically the ILF to identify how to best develop independent living support, building on the successful and cost effective model of ILF provision.
3. At the very minimum the ILF funding should be ring-fenced for the continuing care and support of existing ILF recipients when funding is transferred to Local Authorities and devolved administrations and whilst the task force carries out its review .
- DPAC Press release: 2nd court case to challenge ILF closure launched
- Equality analysis from March 2014 decision to close the ILF
- Court of Appeal judgment on original decision to close the ILF
- Summary of Secret Correspondence from the DWP to McVey on the ILF Closure
- Update on Care Bill 2013 re Committee Debates (Final)
- Statement from Joint Committee on Human Rights on need for freestanding right to Independent Living in domestic law
- ILF Trustees response to Caring for Our Futures consultation
- Jenny Morris’ blog piece on the ILF
- Why the Henwood and Hudson report failed in Justifying the Closure of the Independent Living Fund
- Mary’s story http://campaigndpac.wordpress.com/2013/03/07/what-the-closure-of-the-independent-living-fund-means-to-disabled-people-mars-story-2/
- Justine’s story http://campaigndpac.wordpress.com/2013/03/07/what-the-closure-of-the-independent-living-fund-means-to-disabled-people-justines-story/
- John, Paul and Evonne’s story http://campaigndpac.wordpress.com/2013/03/07/what-the-closure-of-the-independent-living-fund-means-to-disabled-people-john-paul-and-evonnes-story/
- Roxy’s story http://campaigndpac.wordpress.com/2013/03/07/what-the-closure-of-the-independent-living-fund-means-to-disabled-people-oxys-story/
- Kathy’s story http://campaigndpac.wordpress.com/2013/03/07/what-the-closure-of-the-independent-living-fund-means-to-disabled-people-kathys-story/
- Richard’s story http://www.dpac.uk.net/2013/03/what-the-closure-of-ilf-means-to-me-richards-story/
- Penny’s story http://www.dpac.uk.net/2013/03/what-the-closure-of-ilf-means-to-me-pennys-story/
- Anthony and David’s story http://www.dpac.uk.net/2013/03/what-the-closure-of-ilf-means-to-disabled-people-anthony-and-davids-story/
- Kevin’s story http://www.dpac.uk.net/2013/03/what-the-closure-of-ilf-means-to-disabled-people-kevins-story/
- Mary’s story http://campaigndpac.wordpress.com/2013/03/07/what-the-closure-of-the-independent-living-fund-means-to-disabled-people-mars-story-2/
DPAC Research Reports:
You can read/download all of DPAC’s research reports here
The Disabled People’s Manifesto – Reclaiming Our Futures
The Reclaiming Our Futures Manifesto was published in September 2013, by the Reclaiming Our Futures Alliance.
The Manifesto was produced by DPAC, Inclusion London, ALLFIE and Equal Lives Norfolk
Easy Read Version