Sunday, 12 July 2015

Life after the ILF: We are all valuable enough to have a reasonable quality of life

The Independent Living Fund (ILF) closed on the 30th June 2015 (the Guardian wrote a useful article about it). Campaigners campaigned at  Downing Street and the House of Commons, but to no avail. In England the money used for ILF will be transferred to local authorities, but only about a third of those authorities have agreed to ring fence the money. Disability Rights UK has produced useful information about what's happening in each local authority.  (In Scotland and Northern Ireland ILF users will continue to receive funding from Independent Living fund Scotland. In Wales a new Grant Scheme replaces the Independent Living Fund in Wales and ILF funding will be protected, at least until the end of March 2016). For many ILF users the independent living fund gave them the chance to have a reasonable quality of life, to be human. The possibility that this may be lost must be petrifying.

I want to tell ILF users, and others without enough support, to have hope. I know what it is like to have enough support to live like a human being and then to be told that this support will be removed. I have experienced the fear. I have lived through having so little support that I was trapped in my bed wanting to die. (I am severely disabled, and ill because of multiple sclerosis. If I don't have support I am, essentially, trapped in bed). “Because of the increase in care, I realised how awful my life had been previously and how inhumane the previous care arrangement had been…..With that realisation I swore that I would never go back to the previous level of care. Living with such little support was not a life and I would rather die than return to that situation”. You can read more about my story here.
I don't want anybody else to have to go through that, to have so little support that you want to die. But I know that there are people living with the experience of inadequate support and the appalling experiences of lack of human dignity that this brings (for me, sitting in my own faeces was probably the worst aspect of this). And I know ILF users currently fear having to live with this soul destroying lack of dignity.
I want to tell everyone very clearly that we are  valuable enough to have a reasonable quality of life, just like everybody in society is, whether they are disabled or not. ILF users, you do have the right to a reasonable quality of life, you do have a right to live where you choose. You should not have to fight for this right, but you may have to and there are people, and organisations, out there who will support you. Taking Social Services to court was the most stressful thing I've ever done, but it was worth it.
At the beginning what made a difference was reading the Human Rights Act. I looked at the Equalities and Human Rights Commission website and under the description of Article 8 of the Human Rights Act; the right to a private and family life it says  The concept of private life also covers your right to develop your personality and to develop friendships and other relationships. This includes a right to participate in essential economic, social, cultural and recreational activities of the community.  So the Human Rights Act says we all have a right to live like human beings.
I wasn't expecting to go to court. The first thing that I did was to write a letter of complaint to my local authority explaining clearly that I wasn't receiving enough support to have a reasonable quality of life, and that the assessment done was inappropriate.
You don't have to know everything about the Care Act, the law, the eligibility criteria to write a letter of complaint. It's an important step, and in a lot of cases is enough to promote resolution between you and the local authority. I found putting my complaint, and the outcome that I expected (funding for more support) in writing was a really helpful way of reinforcing to me that my expectation of enough support for a reasonable quality of life was reasonable.
Here are some useful links explaining how to write a letter of complaint;

Steve Broach has written a great post pointing out the aspects of The Care Act that are relevant to people transferring from the ILF (an easier read version of the post is here). Statutory guidance (paragraph 23.29) states; ”there must be an ongoing consideration of the person’s wellbeing, which begins with the assumption that the individual is best placed to judge their own wellbeing. The concept of ‘independent living’ is a core part of the wellbeing principle, and is detailed in the requirement to consider the person’s control over their day-to-day life, the suitability of their living accommodation and their contribution to society.”
Unfortunately, in my case the response to my letter of complaint was inappropriate. I realised that that I needed legal advice. It took me a very long time to find a solicitor that would take on my case. I’ve learnt that you don’t need to find a solicitor that’s near to you, they are very used to working with clients via telephone and email, and they’ll explain how to do this (my solicitor was over 100 miles away). Steve Broach has helpfully put a list of solicitors that will take on disability related cases here. From my research I know that these solicitors do take community care cases (if you know of other solicitors that take community care cases let me know via comments or twitter and I’ll add them);
The important thing is that we recognise that we are all valuable enough to get enough support to have a reasonable quality of life. We have to believe in ourselves enough, and we have to shout loud enough for society to hear how horrendous our lives really are when we don't have enough support. We shouldn't have to do this, but we do. We are on our way to a more equitable society but we are not there yet and those of us that can fight have to, in order to help society to make the right changes. “The most common way people give up their power is by thinking they don’t have any.” Alice Walker.