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independant living fund (ILF) - Page 2 - Carers UK Forum

independant living fund (ILF)

Discuss news stories and political issues that affect carers.
I have received this earlier and signed it. Once you read it yourself, if you want your signature to be added or want further information please contact Linda linda_burnip@yahoo.co.uk ( tell her I sent you Image Image Image Image )

hi Rosemary, attached is the letter. case studies and first signatories for the ILF campaign. Please could you all let me know if you are willing to sign up from your organisations or groups to this. If you are an ILF user, could you please say so.We have some MPs on board too but someone else is collating their signatures.


please pass onto any other people you know who may sign up to this, especially ILF users, or well known figures involved in disability politics.
Independent Living Fund letter

Thousands of disabled people rely on funding from the Independent Living Fund to enable them to live independently with choice and control over their lives. ILF users have been left shocked and extremely anxious since it was announced in 2010 that it would be closed down by government in 2015. Already closed to new applicants since May 2010 this decision was taken with no evidence of an equality impact assessment having taken place nor any consultation carried out with current and potential beneficiaries of the 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. “

The Local Authorities have had their resources severely reduced and therefore now only provide basic personal care. Without this extra funding ILF user’s only options will be placement in residential care or more responsibilities being placed on already over stretched family carers, that’s if the disabled person has family support.

Either option will have huge cost implications to government as residential care costs far more than assisting a disabled person to stay in the community and family carers would have to leave employment and manage on very low Carers Allowance and other benefits.

Since 2010 the Minister for Disabled people, Maria Miller, has assured users we would be consulted on this issue initially in 2010 then early 2011, but as users of the ILF fund we have heard nothing since.

Leaving severely disabled people in such anxiety over their lives is violating our human rights to be involved in decisions that may affect us and indicates a total ignorance of how important this funding is for severely disabled people to live with some quality of life.
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
Article 4 states; the general obligation on government to consult with disabled people, before not after decisions or policies are changed.
Article 17 states; we are to be treated with inherent dignity
In addition, the United Nations International Covenant on Economic, Social and Cultural Rights (CESCR) states that we have the right to enjoy the highest attainable standard of physical and mental health and the right to an adequate standard of living. The UK has a duty to work progressively, to the maximum extent of its available resources, to deliver these rights even in a period of economic downturn.
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”.
We have heard ministers state that funding disabled people is ‘unsustainable’ yet we see millions of pounds ‘found’ to fund whatever programs the government finds politically appropriate yet not severely disabled people?
We ask that the government continues to provide care and support for those with the most complex needs via the ILF.

The Independent Living Fund must be retained and reopened to new applicants with adequate funding for this.

It 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.

The funding must NOT be given to local authorities; it is meant to meet the needs of severely disabled people which means 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 wish to have input into the design of the consultation process and assurances that the 23,000 already in receipt of ILF will be assured of continued funding.

We the undersigned believe this arbitrary decision to close the ILF without assessing the impact this will have on current and potential users, and without consultation, violates the Human Rights of disabled people who depend on ILF to live.

Anne Novis MBE, ILF user
Andrew Hardy, ILF user
Sue Elsegood – ILF user
Katherine Arienello – ILF user
Glynis Dawes – ILF user
Kevin Caulfield – ILF user
Gabrielle Pepper – ILF user
Anne Pridmore – ILF user and director ‘Being the Boss’
Roxanne Homayoun- ILF user
Ian Burnip- ILF user
Ruth Bashall – ILF user
Sean Mc Goveren – ILF user

Disabled People Against Cuts
Roger Lewis, Lambeth Disabled People Against Cuts
Jaspal Dhani CEO – United Kingdom Disabled Peoples Council- UKDPC
Mark Harrison CEO – Norfolk Coalition of Disabled People
Joanne Munn – CEO Greenwich Association of Disabled People
Sheila Blair – ‘Being the Boss’
CarerWatch
Theo Blackmore – Disability Cornwall and Isles of Scilly
Kaliya Franklin – Broken of Britain
Kisrten Hearne - Chair ‘Inclusion London’
Tracey Liazard - CEO ‘Inclusion London’
Theo Harris – CEO ‘Kensington Centre for Independent Living’
HAFCAC - Hammersmith and Fulham Coalition against Community Care Cuts
Mary Cox – Age UK

Rosemary O'Neill
Judith Bond
Gemma Novis – Carer
Veronica Birley - Carer
Linda Burnip- disabled mother of ILF user
Fred Williams – excluded from ILF
Beverley Smith -

Jon Staley – Support Worker & Trainer
Cindy Albright
Coover Mistry - member of KCIL
Tanya Doolin
Lyn Whiteside BSc(hons) SRN










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”.

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
many thanks rosemary. Image

i have added my signature to the letter, can i urge you lovely people on this forum to do the same. thank you.
Thank you Rosemary. I have emailed Linda.

You are one amazing person - you always have your finger on the pulse!
Presumably there will be protection of some kind for existing claimants? I mean, they arent simply going to axe the support for tens of thousands of the most disabled people in the UK are they? If so, I dont fancy their chances of winning a single seat at the next general election, it would be tantamount to political suicide.
Scally, they've made all sorts of promises, starting with "we'll consult during 2010", then "early 2011" - then it went eerily quiet.

Not a good sound.
Hmmm, I believe the government will argue they have considered the Human Rights of disabled people " personalisation" is all about equality in society.

Miller...We committed to a formal consultation in 2011 on how existing users would be supported in the future. That consultation should be placed in the wider context of the reform of the care and support system and will therefore now take place in spring 2012, alongside the publication of the planned White Paper on the future of care and support in England.
http://www.theyworkforyou.com/wms/?id=2 ... iving+fund
So the consultation takes place alongside rather than before the White Paper and whilst White Papers invite feedback they are usually the basis of the Bill which the government intends to put before Parliament so the government has already pretty much decided upon its policies and legislation prior to their publication.

At least theoretically it is an improvement on the DLA consultation which had not yet closed when the Welfare Reform Bill abolishing DLA and replacing it with PIP was put before Parliament.

I suspect that this government's contempt for people with disabilities and their carers is only exceeded by our contempt for them.
I suspect that this government's contempt for people with disabilities and their carers is only exceeded by our contempt for them.
Well said. That should be framed
Yes, very well said indeed!
Reading the comments on quite a number of articles regarding cuts and reduction of services etc the Con/Dems are very unpopular...... Condemmed right left and centre.