After more than 12 months of waiting the government have at last launched their consultation on the future of the Independent Living Fund which they plan to scrap from 2015. This will run until October 20th and we will be posting lots of information for people to use to reply to the consultation. The government say that local authorities, like Worcester, can take over the funding needs of disabled people with the highest support needs. We say that’s wrong and the ILF must be retained.
this is the link to the consultation
WHAT IS ILF funding?
Funding for care and support for disabled people and especially for those with the most complex needs to live independently can come from 3 separate funding streams, social services, health and from the Independent Living Fund.
“The Independent Living Fund is a ring fenced resource, for a priority group of disabled people with high support needs that can provide a better lifestyle and outcomes for service users whose full needs would not be met by local authority funding. “
Unlike local authority and health care funding which tends to focus simply on keeping disabled people alive and clean the funding available from ILF helps disabled people to take part in society on an equal basis to non-disabled people.
In 2010 Maria Miller, minister for Disabled People announced ILF was unsustainable and it was immediately closed to new applicants. It is planned to close completely from 2015 with no replacement funding put in place to provide this vital support to those with the most complex support needs.
The United Nations Convention on the Rights of Persons with Disabilities and in particular
Article 19: “Living independently and being included in the community”, states that “disabled people have a right to live in the community; with the support they need and can make choices like other people do”.
It also says they should be included in things that other people in the community do. Countries, like the UK, who agree to the rights, have to make this happen.
Two of the things they must do are:
Make sure that disabled people get the help they need to live in the community, this means things like getting personal assistance
Make sure that disabled people can choose to do things in the community along with other people
The changes in the ILF priority system have obvious implications for the UK’s chances of meeting all such obligations, in terms of the resources available to do so as well as in the actual delivery of them e.g. ILF offers disabled people the flexibility to “choose to do things in the community” to go to university and in many cases to work and pay taxes. The Personal Assistants employed through this funding also pay taxes and contribute economically. There are a number of short case studies at the end of this document explaining how the loss of ILF funding would affect current users of the fund.
We believe that Maria Miller is wrong to say this fund is financially unsustainable as the ILF saves the state on average £37,888 per annum per person eligible for such funding. (the difference between the average ILF payment and cost of residential care at 2010 prices).
The cost to the state of scrapping ILF to save a mere £330 million will be a minimum of paying £757,760,000 * a year in residential care costs. That is more than double the current cost but this figure still excludes the loss of tax revenue as disabled people will no longer be able to work or employ PAs. It also excludes the extra costs which are likely to be generated for the NHS as hugely increased numbers of disabled people are likely to be denied overnight care and left instead with only incontinence pads, or as deteriorating support leads to more health problems.
Most importantly for those disabled people who will lose this financial support they will lose any independence and choice in their lives. So to say the cost of keeping ILF is unsustainable is we feel totally wrong. For those with complex support needs which is the case for those in receipt of ILF funding the cost of residential care according to the Scottish government’s estimate is £72,000 per annum. Using the case study provided by the Scottish government service user A aged 59 with Multiple Sclerosis it would cost the state almost £1million over an average life span to provide him with residential care at current prices. This is just one person.”
We are asking for a number of things from the government:
- that there is a separate consultation on ILF and it is not just rolled into the more complex debate around future funding of adult care and support.
- that there should be a guarantee that ILF funding or preferably that some other form of national and transportable ring-fenced funding will continue as a distinctly funded aspect of care and support funding in some independent form.
- As ILF has been closed to new applicants since 2010 we feel simply asking for it to continue for existing claimants is not enough and discriminates unfairly against younger, newly disabled people and those whose conditions may have degenerated.
- Any care and support funding should be paid for through taxation and should be free at the point of delivery. Access to care and support funding should not be dependent on private insurance schemes.
- ILF should not be restricted to only those in employment as this means those who cannot sustain paid work, but can contribute to society in others ways, will be unable to participate in their communities, families or faith activities.
- ILF funding must be available as now to those over pension age.
- The funding must NOT be given to local authorities; it is meant to meet the needs of severely disabled people which mean that there may be more in one region compared to another. Also the LA will use the funding as they wish, it will not be ring fenced, and we suspect it will not be directed appropriately for the particular disabled people it is meant for.
We are currently collating research into local authority care funding and are concerned that so far neither DWP nationally or any English local authorities seem to have carried out any Equality Impact Assessment into the impact of the closure of ILF to new applicants, nor does it seem that any figures are being kept by anyone of what is happening to those who would have been able to claim ILF funding before.
- We therefore urge the government to carry out Equality Impact Assessments into
a) closure of ILF
b) closure of ILF to new applicants from 2010
c) closure of ILF to anyone not working more than 16 hours a week
d) the impact of the closure of ILF to new applicants who can no longer access any additional care and support funding.
2. We feel that an Equality Impact Assessment into the cumulative effects of all the proposed cuts by the government as advocated by JCHR is essential and should be carried out as a priority.
*assuming an additional care funding cost of £37,888 per person per year for 20,000 service users.
Cases that give examples of impact of losing or not getting ILF
A – 55 year old lady has 35 hrs allocated from LA and 36 hrs from ILF per week, if she loses the ILF and the LA does not find funds to continue support she will lose the following aspects of her life; Volunteering, faith activities, visiting grandchildren, unable to get out of home, do her own shopping, no social activities, trapped. She was awarded an MBE by the Queen this year 2011 for her initiatives raising awareness of disability hate crime and helping disabled peoples organisations, all such activities will cease with no ILF funding. She feels her life will have no purpose if she loses the support ILF gives.
B – “My Son’s care package comes to over £50,000 per year of which the ILF package makes up over £23,000. The Local Authorities “Indicative Budget” maximum level for someone living at home is £31,094 so without ILF his total care package would be slashed by almost 50% and leave it impossible for him to manage to live at home”.e slashed by almost 50% & probably leave it impossible for him to manage to live at home. e slashed by almost 50% & probably leave it impossible for him to manage to live at home.
C – 25 year old man with ILF funding has been able to live independently for 7 years and get a 2:1 in Politics and International Relations plus an MA with merit in Journalism. As part of his degree course he spent almost a year working unpaid as a senior researcher for an MP. He has also worked on a self-employed basis and is now working in the media industry, in spite of being placed in the Support group for ESA previously due to his physical limitations. Without ILF funding none of this would have been possible and he would not be contributing to the economy as he is now doing. He would never have had the chance to go to university like his peers and would no doubt instead be incarcerated and abandoned by society in a residential care home costing the taxpayer much more.
D – “As half my care package is ILF I would first have no control over my toilet needs, this may result in me being catheterised. I am not unable to get out of bed or in bed myself, nor can I dress myself. I need support in all personal care needs, including keeping clean etc. I would not be able to attend any meetings when various government and NGOs ask me to be part of their various consultation plans. I would have no control over what time I got up or what time I went to bed therefore I would have no social life whatsoever. When ILF finishes in 2015 I will not have any social life. This will mean I will not be able to visit friends, attend the cinema or theatre, go to my bridge club or attend a primary school to assist children to read. I will no longer be able to use my car for shopping taking my dog to the woods etc. Having campaigned for the last 26 years this will end as I need support to do this. I regularly attend course on photography and employment issues – these will not be possible without ILF funding.”
E. “I am 27 years old female, and I currently live in my own flat, with 24 hour PA’s who I have directly employed. I have had various levels of funding from ILF, ever since becoming an adult. It has meant that I was able to live on campus at theUniversity ofWarwick, where I completed a BA in History and an MA in Modern British History. I was then forced to move back to my family home, because I did not have the high level of support that I need, and I have only recently been able to start living independently in the community, with funding from my local authority and ILF. This amount was not as much as would have previously been the case because a freeze was put on the amount that they, ILF, could contribute to disabled people’s care packages in April last year, before my current care package was agreed. As a result, I was only entitled to receive the same level of funding that I had been awarded in my previous, much less expensive, care package. This meant that my local authority was put under increased pressure to fund my entire care package, and after the ILF is abolished, it seems very likely that all local authorities will find it difficult to provide care for severely disabled people living in the community. I have had to really fight against my local County Council in order to get funding for my current care package, but what scares me is that although I will always be disabled (and actually, my needs will increase in time), there is no kind of guarantee that I will receive my current care package even past my next review. ”
F. I am a 44 year old digital artist/editor & film maker, a lot of time is spent travelling to locations for shoots, I can’t imagine how I would manage without ILF which funds a third of my care package.. to lose such vital funding will probably change my life in a way presently I do not want to think about, however, as the government is pushing this legislation through regardless, I have to consider my position. Ultimately I fear that any real & significant control in my life and how I presently choose to live my life will be significantly curtailed. I know in this present political climate, any changes will be presented to the general public in a way that suggests no “significant” change, “the disabled” are worrying needlessly etc, but the reality has to be heard. I will have to make my PA’s redundant, relying on goodwill of friends or volunteers would not be feasible. I would lose control of my life.
H. I am a 40 year old ex archaeologist, living in busy East London, and it would be impossible to manage if I lost my ILF. This funds 50% of my care package, so the loss of ILF would mean that I would lose my independence. At the moment I live independently and use my ILF to maximise my independence, to access the community, to do voluntary work in three different places. This government has pushed legislation through in a way which challenges human rights. Without ILF I would lose my home and my independence and would be forced to rely on my aged father and sleep on his floor as his house is inaccessible.
I. I am 39 years old and my ILF contributes roughly 25% to my 24/7 package. It is thanks to the ILF that I have been able to study at University, become involved in voluntary work and, more recently, have been able to hold down a full time job in a disability organisation, helping other people make the most of their care packages. The ILF has allowed me to contribute financially to the economy yet there are many more people who, thanks to the ILF have made contributions to society that are every bit as important, and often times more, than my one contribution. In a time where disabled people are classed as undeserving scroungers it is vital to point out these invaluable contributions and also to not that, without ring-fenced funding that affords people more than survival care we will be forced into a position were we can’t give back to society. I have already seen this in my line of work where people who would have benefited so much from funding from the ILF are just left with a couple of visits a day – literally for “feeding, watering and toileting” – of course there is no willingness by Social service to put that extra little bit in any more, as they know that the ILF won’t be there to part fund! This is a real disgrace. Personally, any negative change to my care package will have not only a severe affect on me, but also on the 6 people that I employ as Personal Assistants. The loss of the ILF really is a return to the dark ages!
J. Jane has Downs Syndrome. In some ways she appears to be quite a capable lady, but has a severe learning disability and also and most importantly has severe health problems which could prove life threatening if not handled immediately and in the correct manor.
Karen has a profound mental and physical disability. She is mostly a happy lady but with no means of communication other than her body language.
Jane and Karen’s families have come together with the help of their local learning disability team and have enabled them to live in an apartment together, for the past 4 years, with the care of personal assistants 24/7, employed directly by them using funding from the Independent Living Fund. The ladies both live very productive and worthwhile lives together accessing activities in the community and interacting with everybody they come into contact with.
This is exactly what the Independent Living Fund was intended for and Jane and Karens lives have improved considerably. They have a future to look forward to rather than spend the rest of their lives in a care home
Now it appears that the Independent Living Fund is going to be withdrawn at the end of the present parliament, with no promise of anything to replace it with. How will Jane and Karen continue their lives living independently in the community?