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;
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.
