July 1st 2015 marks a sad day for disabled people. It is first day of a new regime for the funding of the care some disabled people require, as the day before saw the closure of the Independent Living Fund. The fund, formed in 1988, was designed to cover the extra costs of personal care that those disabled people with severe impairments require, and to ensure that all of these people could live independently in their own homes. It was a centralized fund that ensured that all disabled people who qualified were treated equally no matter where they lived. The government has closed the fund and passed the responsibility to fund the care once provided to each disabled recipient's local council. However, the funding has not been ring fenced, and so it is up to each council to decide what level of support is provided and how that is funded. Why does this matter?
Well the ILF placed the disabled person at it's centre. I always describe it as allowing disabled people to be the captain of their own ship. It allowed each recipient to choose who supported them with day to day activities that most non-disabled people take for granted. The people who qualified for the fund require assistance with things like visiting the toilet, getting into and out of bed, dressing and feeding themselves. I want you dear reader to dwell on that for a second. Imagine if you required such assistance, would you not prefer to choose who carried out the most personal of support? To me this element of the change is why this it really is the cruelest cut.
Through out my life I have met and become friends with many people who qualified for the ILF, and they all told me how the fund had changed their lives. They had gone from relying on a mixture of family support and occasional visits from professionals to carry out some of the more personal elements of their care to the ability to employ staff who lived with them to support them as they required. This had allowed them to leave home and live as most non-disabled people consider "normal". Those who had no family gained the ability to move out of care homes to live in the community. That is how important the fund was. It set free an entire generation of very impaired people, and it marked a real seed change in the way society considered how it supported disabled people.
Backstage at the Paralympic Opening Ceremony with performers (and ILF recipients) Sophie Partridge and James Rose
At it's heart the ILF said that everyone had the right to control how they lived. If a disabled person required help to do "normal" activities, it should be the disabled person who was at the centre of choosing who helped them. It wasn't a benefit, or handout, but instead a different way of covering the costs of supporting and caring for people with severe impairments, which turned out to be much cheaper than the method of care homes it replaced. To many people who are passionate about creating a society that allows disabled people to live equally, in a way that non-disabled people take for granted, the ILF marked a huge milestone in our drive for a fairer society.
I ask anyone who is reading this who is not disabled to imagine suddenly needing to be helped to eat, dress, toilet or even get out of bed and then have the ability to choose who helps you with these tasks taken away from you too. This is what may lay ahead for many disabled people as councils who have already faced massive cuts in their funding are asked to support people who in June were not their responsibility. However much they might want to continue the support provided via the ILF, can they justify the expense? Or will they begin finding new ways of supporting disabled people? Will they end 24 hour a day support, replacing it with brief visits by care staff? Will they ask people to wear nappies rather than provide someone to assist with a night time pee? Sadly the answer is yes to all of these, as all have already happened as the hand over from the ILF to council provided support began. Again I ask you to imagine how it feels to be asked to wear a nappy when you don't need one.
I hope that you will agree that the sign of a civilized society is how it treats those who require help. It doesn't matter what you feel about austerity or cuts, this is not about that. It actually costs more to abolish the ILF and hand over support responsibilities to local councils, so it saves no money. This is ideological. A dislike of centralized systems of government and funding should not create a return to a society where disabled people have to be placed into care homes. Especially as all of the people I know who are in receipt of the ILF currently work, but would most likely not be able to do continue in work under the regime. How can you work if you have no idea what time the person who is going to get you up and dress you might be arriving?
If I'm honest I could rant about this for pages, but the Huff would frown on that. So I will end here. Please put yourself in the position of the disabled people who are losing their ILF support, understand how fearful they are about the future and join them to say no, that's enough. This is one cut we really do not need to carry out. Ask your MP to reinstate the ILF and give dignity back to those disabled people who require a high level of support. It's not too much to ask.