As SIAâ??s Social Care Adviser, I have had a number of calls from members who are concerned about the coming closure of the Independent Living Fund (ILF) at the end of June 2015. One caller suggested that we set up something on-line for our members who are ILF users, so that they can support one another and share information and experience through the transition period.
This forum is for members to post their questions, answers, experiences, news and concerns about the end of the ILF.
The remaining ILF funding is to be transferred to local authorities, but because the ILF is for people with high levels of care needs, it is likely that some ILF users may qualify for NHS Continuing Healthcare (CHC). Unlike local authority care or ILF support, there is no charging for CHC users. There is also now a legal right to Personal Health Budgets and Direct Payments for people in England who qualify for 100% NHS-funded CHC (but people who get joint funding by both the NHS and the local authority can only have them at the NHSâ??s discretion). Direct payments for health care are very new.
There have been two legal actions taken against the governmentâ??s decision to close the ILF. In the first, the court ruled that the closure was unlawful because the impact on disabled people had not been given due regard. However the government revisited the decision, and again decided to close the ILF. In the second legal action, the court ruled that the second decision to close the Fund was lawful, and refused to allow any further appeal against this ruling.
There is some more general information on the SIA website about the closure of the ILF, (at http://www.spinal.co.uk/page/closure_ilf ). This also includes links to further information on the closure process, local authority social care and NHS Continuing Healthcare.
You can also send me (or other people who post on here) private messages through this forum. I will also try to answer questions in forum where I am able to.
I live in Haringey North London and I have been in receipt of funding from the ILF for the past 14yrs. I am aware of the closure of the fund from 30 June 2015 and have been in contact with my local council about how the money from the ILF will be managed once it is paid directly to them. To date I have not been successful in getting any information from the council about how the ILF funding will be managed or even paid to me. I am aware these funds are not going to be ring fenced and I have the question why not?
The government will presumably pay my local council the funds I am have been assessed as requiring so why should I not receive them?
If I do not get this funding who will? Surely I have a legal right to these funds, after all the government are making the payments?
Is it lawful for the council to withhold the payments to me?
I have been in contact with other people living in different areas of London and it appears some councils are ring fencing the funds for the first year were other councils are reassessing people who have received ILF funding.
I would be keen to learn other peoples experiences and your thoughts on the legality of councils withholding the funding to an ILF recipient.
as far as I can see, now that the court has ruled that the 2nd decision to close the fund was lawful, and nobody can bring a further appeal, it does look like the council’s legal duty is to assess you according to the law governing social care and their own policies, so ,as you are already aware, there is no guarantee of keeping the same package, unfortunately. you may need to make a case for why you need to care that you do, and what negative impact there will be on your well-being if they reduce your care. (You can also contact me for advice if you have difficulties, on 07535 774135 or [email protected] )
yyesterday a complaint was made to the United Nations that the closure of the ILF was in breach of several articles of the United Nations Convention on the Rights of Persons with Disabilities, notably article 19, the right to independent living. More information about this here: http://www.inclusionlondon.co.uk/UK-Disabled-people-appeal-UN-over-Independent-Living-fund-closure
Scotland is setting up its own SILF, taking over existing claims, and pledging new money for new claims. Wales has recently committed to maintaining packages to ILF individuals for nine months, until the end of March 2016, but says that funding thereafter depends on UK funding settlement in future, and the money will be administered by social services.
I have heard that a (very) few English councils were planning to ring fence the money for ILF recipients, at least in the short term, so in those areas most people may keep a care. A few others were going to ring fence it for social care in general, so there is a risk of money disappearing into the general social care pot rather than staying with those people who were on ILF. With the majority of councils, who as far as I have not committed to any ring fencing, is not even guaranteed that the money will be spent on social care at all – although with your connections in London, you may have more information than me on this
Thanks for your reply. I have reviewed the link which relates only to new claimants. I am so very surprised little action seems to be taking place about this fundamental change which will effect so many peoples lives. There must be numerous sia members who will be severely disadvantaged by the closure of the ILF. Would the sia consider campaigning against this? Just because the original ruling to close the ILF was overturned does this mean we have to sit on our hands and do nothing?
The #SavetheILF Campaign will be holding a national #SavetheILF meeting on Thursday 28 May 12.30-5pm at St Martin in the Bullring, Edgbaston Street, BIRMINGHAM, B5 5BB.
The purpose of the meeting is twofold: to discuss and agree next steps for the ILF campaign in light of the General Election and to run an advice workshop on ILF users rights under the new Care Act and through transition to Local Authority funding – delivered by Kate Whittaker, solicitor at Scott Moncrieff.
If you intend going to the meeting, please contact me and I will get you an email address to confirm this with the organisers.
SIAâ??s resources are limited, but I shall be attending that meeting and looking at where we can get involved in the campaign. This is an issue which affects our members disproportionately – in 2013 the ILF said 982 people, 5.5% of ILF users, had spinal cord injury (whereas less than 1% of disabled people more generally have spinal injury).
We are also part of the Care and Support Alliance, a quite influential group of charities campaigning for adequate social care funding, and we have been active in getting the Alliance to give a higher profile to the effect of social care cuts on people with high levels of care and support needs, such as former ILF users — if social care is adequately funded in the future, councils will be much more likely to provide adequate care packages.
You are right about the UN complaint being about the fund closing to new users, but if this were found to be unlawful for the reasons stated, it would probably mean that closing the fund altogether was also unlawful for the same reasons. Unfortunately, a UN complaint can only lead to recommendations, not a binding decision, but it can help put pressure on the UK.
Disability Rights UK has now identified more councils who are ring fencing funding for ILF users – but in some cases this is only because they will not have managed to assess everyone in time for ILF closure: your own council,Haringey, is one of these. Click here for the full article.
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