Tuesday, December 14, 2010

The Death Of The Independant Living Fund

A Guest Blog reproduced with kind permission of the author, Fighting Monsters

Yesterday was quite a day for adult social services. As well as the more obvious announcements of the cuts to local authorities and the unveiling of a so-called ‘Localism Bill’, Maria Miller, the minister for disabled people announced that the ILF (Independent Living Fund) would be ‘financially unsustainable’ after 2015.

Financially unsustainable.  It didn’t need a whole lot of foresight to see this coming. Back in June, the ILF was closed to new applicants after running out of money – so the budget for this year lasted between April (when applications opened) until June (when they closed).

Community Care writes that

Miller said that the ILF would stay in place to fund existing users until the end of this parliament in 2015.
Its payments would most likely be transferred to councils to administer as part of personal budgets, though Miller’s statement does not specify whether funding would be protected at existing levels after 2015. 

And so it starts, the shaking off of responsibility of central government to provide additional support for disabled adults and the move of the responsibility for the additional funding to local authorities.

There are a few things that it is important to bear in mind at this point. The ILF is only or has been only accessed by people who are most disabled and have the absolute highest care needs. It was set up in 1988 although the rules regarding eligibility were reviewed in 1993. The purpose of the ILF was, as it’s name suggests, to maintain and allow for people with high care needs to remain living independently in the community rather than the alternative which was and is residential care.

The current rules state that someone is eligible for ILF funding when input from a local authority reaches a current level of £340 per week, the ILF funding will match that amount that the local authority on a pound for pound basis.

In my current incarnation, I don’t come across people who have ILF payments frequently – it has, like DLA only been available for people between 18-65 and over 65s can only claim if they had an existing award prior to their 65th birthday.

In the past though, particularly when I was in a generic adult social services team, I had a number of dealings with the ILF. On a personal level as well, my father received money via ILF.

It’s worth remembering that the model for ILF payments in 1988 was revolutionary and one that has and continues to have a major impact on the progression of adult social care. The ILF gave the money for the first time, directly to the disabled adult to choose their own service providers and/or employ their own PA (personal assistant). The Independent Living Fund was very much the forerunner of the direct payment/personal budget progression and the model for both monitoring and extending budgets directly to adults with social care needs themselves was trailblazed by the ILF.

The money provided by the ILF had, of course, guidelines attached regarding what it could be used for but it was money given in addition to the very bare needs met by local authorities. It was and is money that contributes to providing a better quality of life for people with high level needs because, believe me, you don’t get to £340 per week level of needs if you don’t have very high level of support needs.

The difference that the ILF money made was for a carer to accompany a service user to the local shops rather than go out and do the shopping for them. It was the difference that allowed a carer to take a service user to the local swimming pool rather than relying solely on day centre services. There is no doubt in my mind that ILF money contributes precisely to quality of life differences rather than the life or death care that local authorities provided.  These are the examples that are often given for ‘care planning’ with personal budgets provided by the local authority – the difference is the amount of money that you have in the ‘pot’ and the potential doubling that happened when the ILF contributed – acknowledging that those with very high care needs had.. well.. the need for care over and above the bare minimum to retain a positive quality of life living at home rather than in a residential setting.

This is my main sadness is seeing its demise. It’s hard to stomach for the government but quality support and quality of life costs more money. Yes, the money has to come from somewhere but it shouldn’t  be a ‘burden’ . We, as a society,  should be prepared to pay the cost of it.

I know exactly what will happen when Maria Miller shifts the burden of cost of care back to the local authorities – the levels of care provided will fall through the floor and although  for some people (those currently in receipt) that money may well be protected for a period of time,  for those coming up through the ‘system’ who don’t have access to this additional support, it will create a group of people who may be living at home but on whose family the burden of care may well fall more heavily – removing the independent from the idea of independent living and replacing ‘living’ with ‘existing’.

As Lord Morris is quoted as saying by the BBC

“This will not save money. If you make it harder for disabled people to live at home, it will cost more because more of them will have to be in hospitals and other places of full-time care.
“It will mean far more of them having to be in institutional care at far greater cost to the taxpayer.”

It’s so horrifically ironic that as policies shoot away into the distance taking the goal of ‘personalisation’ as a mantra, that the very first forerunner  of that policy  which was revolutionary at the time – is being put down with no evidence that there will be any central government funding to replace it.

That’s not to say that the idea of the ILF needed to stay the same. I have no doubt it needed to develop – not least because I felt the age limits were at best arbitrary and at worse discriminatory -  but by pushing the burden back to increasingly pressed local authorities the government has alerted us to its real intentions about the cost-saving implications of the move towards personal budgets.

3 comments:

Emma said...

Hi,
I just wanted to say thankyou for writing your blog it is endlessly useful especially for someone with eds, for someone who is young and disabled, and for someone on benefits, which is a hell of alot of people (inc me! p.s.. I have eds too!) I have shown my appreciation by linking you on my blog, the link says..

The best EDS/disability blog I've ever seen, the girl deserves a medal. Totally a must-read if applying for disability benefits.

:) Emma x

Fire Byrd said...

When I first started out nursing way back in 1970 they still had hospitals full of 'cripples' and 'retards' Thankfully we no longer believe those vile names are acceptable and people are people however they are. It will be criminal if the ability to live as independant a life as possible is taken away from people. Are we going to open up those horrendous special hospitals again and keep all the people safely under one roof so that they become a hidden secret that society doesn't want to know about again. No should be penalised for being outside the norm and the removal of this will do just that.

Emma said...

Fire Byrd,
Totally, agree.. I get pretty nervous about this stuff when I think about the nazis bumping off millions of disabled people prior to the death camps even opening by annonymous independant vote from 2 docs who never met the patients, or each other.. just a file with 2 boxes.. 2 crosses and you were done for, 1 cross and you got a couple of months then re reviewed, all on paper..noone taking anyt responsibility for the outcome, its the stage after the creepy institutions, I dont think we are going backwards to victorian thinking, more that we are going forwards into a darkness that can only occur when all the humanity taken away, noones hands have blood on them. "I pulled the trigger but not my kill as I didnt give the order"... "I gave the order but I didnt kill as I didnt pull the trigger" the ultimate in denial. I'm off to read your blog now :) have to say though, I am trying to reclaim the word cripple because I see it differently, I am more disturbed by words like disabled or handicapped or heaven forbid handy capable.. my illness doesnt feel like those things, it feels like being crippled, and I think that softened words protect the people outside of that body not the person in it, but thats totally my opinion and I totally agree used in any nasty context it is horrendous and cruel, I only ever use it in reference to myself when trying to express how I feel, never to upset anyone at all. :) x