View and download the full ILF One Year On Report (PDF)
Inclusion London has produced a report detailing the negative effect of the closure of ILF in June 2015. These are just a few examples of cuts people have faced to the vital support they need to live independently.
The full report will be available shortly at https://www.inclusionlondon.org.uk
The foreword by Dr. Jenny Morris sums up the grave and systematic erosion of support for independent living. Here is a brief portion of her summary.
For the first time in the history of modern social policy, we are in danger of going backwards in terms of the support available to disabled people. From the early 1970s, disabled individuals and their organisations campaigned for, and won, important changes to policy and legislation which – for many – meant for the first time they could aspire to the same ‘ordinary lives’ as non disabled people.
One of those achievements was the Independent Living Fund, set up in the 1980s as a direct result of opposition to changes in the benefit system. Using eligibility criteria which applied wherever someone lived, the ILF topped up the funding available from local authorities, in recognition that those with the highest levels of support needs require assistance which local authorities did not provide. Moreover, resources were provided in a way which enabled people to have choice and control over the support they needed.
The ILF made a major difference to people whose needs had previously meant their only options were residential care or a very limited life for them and their families.
The Fund closed in 2010 to new applicants and no-one monitored what has happened since then to people who would previously have qualified for support. In the meantime, local authority adult social care budgets have been cut back, undermining their ability to deliver the Care Act’s promise of well-being, choice and control to those whose ILF funding transferred last year to local councils.
The case studies below are of course examples of cuts and practices which are all too common and exacerbated by the lack of a cohesive national system of social care provision leaving people condemned to dependence on a post-code lottery where the level of support provided depends simply on where you live. Changes to the way in which Local Authorities will now be funded are set to make this even worse in the future.
Case Study 1
“I had my reassessment last week. It was very poorly executed and arranged. I had received an email the week before from a care manager claiming to have tried to contact me by phone several times and needing urgently to perform the review. I spoke to her on the phone the following day and once again she stressed the urgency of the matter.
I pointed out to her that the reality was that the ILF transfer was not a sudden thing and that they have had the last three years to plan it yet they wait until less than a month before end date to contact me! in order to satisfy her urgent need i had to arrange leave from work in order to do it.
On the day of the review she arrived with a second person without asking which i felt was extremely rude. When i challenged her on this she just casually informed me it was all last minute. During the course of the visit i pointed out that the whole closure of the ILF was causing immense stress that was compounded by the lack of any clear message from LA – i didn’t really feel that either of them took my comments seriously.
At two points during the interview the idea of using a conveen and inco pads as an alternative toileting solution was raised. This i felt was completely inappropriate given the fact i have no medical need for either and no continence issues at all. It wasn’t directly said but it felt like it was being put forward as the solution to cutting of hours, even over night stays.
There was never any effort to reassure me or to offer me advocacy of any sort. I have
no idea what the outcome of the reassessment will be and now just have to wait.”
– Former ILF recipient
Case Study 2
“In September 2010, I started my university degree. I was really looking forward to starting my course and experiencing the student life, but as a disabled student I needed additional help. I lived in halls of residence for three years but not without its challenges. In order to live in halls I needed my personal assistant (PA) to live with me full time. However, the cost of my PA’s room at university was very expensive. 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. I believe that by removing the ILF it is preventing disabled people from living fully independent lives. We have the right to have the same quality of life as our non–disabled peers; we just need extra help to do this, which is what the ILF can give us. The ILF can help pay for essentials such as care, which is extremely important for disabled people, because having the right care helps on our path towards independence.”
– Disabled young person who missed out on the ILF
Case Study 3
Wayne is 44 years old. He suffered from tumours in his brain which had left him with significant physical impairments. He had been receiving 72.5 hours to meet his needs including ILF funding. Following his re-assessment his package was cut to 38 hours per week. The reason given for the decision was that the Independent Living Fund had finished. This would have left the person in a position where his hours would be taken up with his personal care and subsistence needs. As a person who has many interests and is very involved in the community it would have left him isolated at home and unable to maintain his quality of living.
Case Study 4
“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 can’t bear to think of a return to life without these opportunities.
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”!
I have no doubt that ILF funding would have made her life much, much better.”
– Former ILF recipient
Case Study 5
“Apparently all I need is to be clean & fed. My County Council will only pay for ‘hands on personal care’ which can all be condensed into a couple of hours a day. I don’t have the right to expect any quality of life or a clean home. I will be kept all clean & shiny but if my home is a cesspit that doesn’t matter.
[The social worker] told me all LAs (Local Authorities) knew the closure of the ILF was a cut – no more, no less. And the main reason why it was closed in her opinion? Because now each individual’s LA has to be the one to break the news that their lives are too expensive. Her words were: “…they transferred responsibility for Social Care funding to the LAs so that they (central Government) would not have to tell anyone what was going to happen. It’s a cut, pure and simple.
When I went along to a DWP consultation when the ILF closure was announced they told us that it made sense to have one funding stream only and it most definitely wasn’t a cut. A barefaced lie, in other words.”
– Former ILF recipient
Case Study 6
“[The] County Council ILF money is not ringfenced. They originally reassessed my son and cut his budget by £700 a week although his situation has not changed. I fought this and eventually got that money back. Then they got together with Health and the Health Authority cut his budget from £1,600 a month to £54 saying he did not need complex manual handling. Luke is quadriplegic and blind and has had complex manual handling funding for 18 years. His physical condition has worsened. We are fighting that, but they have stopped paying the money, which means he will not be able to pay his carers.”
– Family member of a former ILF recipient