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What the closure of the Independent Living Fund means: Justine’s story

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What the closure of the Independent Living Fund means: Justine’s story

This is the second testimony from the series that DPAC is running from people who rely on the Independent Living Fund.

The ILF was set up in 1988 as a stand-alone 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. That decision will be challenged in court in March 2013.

Further details on DPAC site here with added resources so you can take action to support this campaign.

See video interviews and more discussion with ILF recipients on the Guardian site here

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Justines story

My name is Justine Jones; I am 26 years old and I have Rheumatoid Arthritis.

I used to be a confident art student at a top art school in London with great expectations of becoming a successful artist. I was looking forward to my life and all the possibilities and opportunities that lay ahead.

Then my life changed when my disease took hold. For that year the disease rampaged through my body destroying my joints. My health deteriorated drastically. I lost all my mobility, I couldn’t walk or get out of bed because of pain or discomfort of my swollen joints, and I couldn’t even do the simplest of tasks anymore.

My family weren’t able to cope and I was given basic care from social services which consisted of 1 hour for the morning call to get me up, bath me, take me to the toilet, dress me and feed me. The lunch time call was 30 minutes; to make me lunch, help me to eat and take me to the toilet.

Even though I had this care in place my problems got worse; I lost so much weight combined with spending every day in bed put me at higher risk of developing bed sores. I spent all day everyday in my room, each day blurring into the next making me feel depressed, isolated and alone. I was just wasting away in my bed. This caused muscle wastage; I slowly lost all the muscles used to maintain balance and to walk making me more prone to falls. I didn’t recognise myself; I felt like I was cocooned in the shell of my body feeling helpless, this caused panic attacks.

All of this put a strain on my home and social life.

Before I had ILF my parents who both work full time had to help me with the most basic of tasks (getting undressed, eating dinner, assistance getting to bathroom during the night) making me feel like a burden to my own family. My social life hit a stand still as I was unable to go out and meet friends as I was to unwell to really leave the house.

I felt like a prisoner stuck in a body that wouldn’t work, my life was restricted to my bedroom unable to eat, walk, use the toilet, even breathing and sleeping was agonizing.

Once I got ILF, I used the extra hours of support to go to Hydrotherapy and physiotherapy to build up my muscle strength. I slowly got my balance back lowering my risk of falls and gradually improved my walking meaning I wasn’t as reliant on my wheelchair and no longer at risk of bed sores as well as no longer had panic attacks about falling.

I also used the extra support to get out of the house and see friends, go shopping and go to the cinema, which improved my relationships with my friends and family. I was part of the world again. I also used the extra support to help me give back to my family by making them a meal every now and then and no longer relied on my family for so much which meant I didn’t feel like a burden anymore, this improved my home life a great deal.

As my confidence grew I used my extra support to help me attend a local committee for disabled people where I volunteered. This gave me purpose in life, opportunity to meet new people, make friends and the experience I needed to get the job I have today.

I wouldn’t have been able to do all of this without the extra hours of support that I received from ILF. The basic care given by the local authority is to maintain your primary needs to survive (washing, dressing and eating).

But life is so much more than that.

With ILF I have quality of life and support to be a pro-active, positive person who is part of the community. I have a paid job, a social life, I am driving and I have just moved into a flat with my fiancé. I would not change being disabled and I think my condition has brought more to my life than it has taken away but it has only been possible for me to feel this way because I have the support I need. In Bromley that support to live rather than to just exist is not there through Direct Payments and not without the ILF.

The ILF gives disabled people options by giving us extra support that isn’t solely for basic care needs. Without the ILF we are stripped of everything; our quality of life, our health, our independence, our dignity, our pride, our relationships, our purpose and our hope for a future.

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