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More from disabled people on the closure of the Independent Living Fund

From DPAC and Inclusion London

In the countdown to the Independent Living Fund court case on 13 March, DPAC and Inclusion London are publishing stories from disabled people affected by the closure of the ILF. This follows the powerful testimonies published by the Guardian.

The ILF was set up as a standalone fund to which people with severe disabilities could apply for money for added carer hours. That extra money meant that people could afford to pay carers for the help that they needed – round-the-clock, in some cases – to live independent lives. It meant that they didn't have to go into carehomes. But at the end of last year, the government decided to close the fund.

Please circulate the links to the stories and use the campaigns pack to promote the Independent Living Fund campaign as widely as possible. Details can be found here.

Sophie's story:

We can’t go back 30-odd years” – watch Sophie talking about the Independent Living Fund and her fears for the future in this powerful film

Roxy’s story

Roxy ILFI have been fortunate enough to be entitled to the receipt of funding from the ILF for all of my adult life and have consequently enjoyed a high standard of life thus far.

I have multiple disabilities ( including severe physical impairment, severe visual impairment, and Type 1 Diabetes), and the ILF has meant that it has been possible for me to have my support needs met.

These considerable care needs mean that I require round-the-clock assistance to do pretty much everything. I need help with washing, dressing, toileting, all aspects of personal care, managing my diabetes, preparing food, eating it, undressing, physiotherapy, moving in bed over night, and those are just my very basic requirements. The extra funding from the ILF means that I can afford to get the support to live a little, rather than just meet these basic needs.

Directly because of the support that the ILF has given me, I have been enabled to achieve a high level of education, including a BA and an MA living on campus at university, and I am also now pursuing my second BA with the Open University.

The ILF has enabled me to travel abroad and see a bit of the world, and it opens many other social opportunities to me; for example, I love to see live music, and I am keen on visiting the theatre and eating out. I am able to spend time with my family and friends, in my hometown and further afield, and the ILF means that I Have been able to maintain these relationships, because it has meant that I can have assistance with doing so. The ILF has also made it possible for me to now live independently in my own flat, and I am so glad that I am able to exercise some choice, and am not yet forced to live in a residential care home.

When I think about the ILF closing in 2015, I know that I only have two years left to live. I may exist for a little longer, but I can’t see how I will be able to maintain any quality of life, without the funding to live independently.

Despite having multiple disabilities, I am in quite good health; but I know that this will change if the ILF is closed. I am sure that I would have to use agency staff, and I know from experience that they are so badly equipped to help manage medical conditions, that their clients are frequently admitted to hospital.

As a diabetic, the only way for me to properly manage my diabetes is with an insulin pump. This requires very frequent blood testing, and specialist training to use, which is not a problem with my direct employees at the moment, but would be impossible with agency staff. I would have to change to another, inadequate, system for attempting to manage my diabetes, as I would be limited to a couple of visits a day from the district nurse to attempt to control my diabetes. This regime will fail to control it, and so I can look forward to a future where I spend a lot of time in hospital. Until they decide that it would save everyone money if I were in residential care.

I am usually a sickeningly optimistic person, who can’t help seeing the silver lining to any cloud; but this time I don’t see anything positive in what the government want to do. If they have the capacity for shame, then they ought to feel it and the inhumanity of their proposal.

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