Jun 252015
 

Dear Mr Speaker,

On 30th June the Independent Living Fund, providing essential support to disabled people with high support needs with everyday basic tasks such as eating, drinking and going to the toilet, will close. This is the result of a decision taken by the government without a vote in Parliament.

The closure will have a devastating impact on disabled people. In December 2014 the High Court found that as a consequence of the closure of the Fund “independent living might well be put seriously in peril for… Most (or a substantial number of) ILF users”.

Without the ILF the UK is not able to meet the basic human rights of disabled people.

We have seen this since the closure of the ILF to new applicants in December 2010 which has resulted in disabled people left trapped in their own homes or dependent on friends and families, placing intolerable strain on relationships and denying disabled people the chance to live an ordinary life.

Now as Local Authorities start to reassess individual support packages and inform disabled people what support we will receive after 30th June 2015 we are fearing for our futures. Currently we pay taxes, we work, we study, we raise our families and make many valuable contributions to society in other ways. The cuts in support that are being handed out to individuals will leave us without dignity, sitting in our own faeces for hours at a time dependent on the kindness of friends, family, neighbours and even strangers just to eat, drink and move.

We urge the honourable Speaker to ensure that it is our elected Parliament that has a say on whether disabled people in the UK have the right to independent living or whether in the sixth richest nation in the world we are denied the same opportunities to live and to contribute to society.
Yours ever,
Disabled People

Feb 212015
 
The Save the ILF Campaign was successful in all parts of the UK except England, where the Labour Party repeatedly refused to save it on and coming to power they followed through on this non-promised. The guidlines they had promised to send to Local Authorities where duly sent and had were of no help whatsoever to former ILF recipients.

The Save the ILF Campaign was successful in all parts of the UK except England, where the Labour Party repeatedly refused to save it. Then Shadow Minister for Disabled People Kate Green said “I do need to start by being clear that it’s not Labour’s position to retain the ILF”.

September 2015: The Legacy of the First 100 Days of a Labour government elected with a majority. Disabled people throughout the devolved nations of the UK are celebrating the continuing existence of their own Independent Living Funds. Yet in England those with the same support needs have little to cheer about as Labour themselves abandoned disabled people in England and continued forcing through the closure of the ILF, refusing disabled people the right to have the support they need to continue to live independently in the community.

Labour kept its pre-election promises on cuddly animals, and unfortunately kept to it's pre-election policies on disability as well
Labour kept its pre-election promises on cuddly animals, and unfortunately kept to it’s pre-election policies for disabled people  as well

But resilient as ever disabled people are cheering the fact that under Labour there are a significant number of improved rights for animals. After all we accept that not being pretty and fluffy and not enjoying being patted on the head by people passing us on the street- we were never likely to get the same sort of attention as cute little animals.Besides which, after 5 years of Condem austerity measures we’ve come to accept that the main political parties view us as stock with no human rights.

One of the first acts of the new Labour Government was to pass legislation to improve the lives of dogs and cats-they must now all be fed daily, be allowed out to go to the toilet regularly and have a daily walk. Not so for disabled people who have lost their care and support funding and who can only watch wistfully the new freedoms that pets have- imprisoned as they now are inside the walls of their homes unable to leave and take any active part in society. Many social services have introduced toileting regimes allowing disabled people to go to the toilet only at set times, or replaced human support with incontinence pads and catheters.

Fresh food has become a distant memory as more and more 3 minute short visits are all that is available to humans. Along with the wild animals which Labour is protecting by banning them from being used in circuses some of us are also being relocated to new ‘homes’. Sadly for disabled people this means we’re being removed totally from society and pushed out of sight and mind since the closure of the ILF in England.

Ed Miliband and Ed Balls back when every disabled child mattered

Ed Miliband and Ed Balls back in 2006 when every disabled child mattered

Many young disabled people have now been sentenced to spend the rest of their lives in old people’s homes which provide the only residential care available for them. Meanwhile the search for suitable re-homing of our circus animals is being supported by a new independent and well-funded task force set up by Ed Balls. Equitably the re-homing of disabled people by Local Authorities is being done following a set of non-compulsory guidelines drawn up by the new minister of disabled people Dick Ensien.

When asked why he has abandoned the previous legacy of the last labour Governments Every Disabled Child Matters Campaign which he spear-headed Ed replied “ Although I find some disabled children cute I can’t stand them once they reach adulthood and besides which having had 'a hand up' while children the Labour party now no longer need to do anything more for them. They’ve already had equality of opportunity as outlined in Tony’s Third Way ideology and should just be jolly grateful for that.

Before the election, Rachel Reeves promised "Labour will be tougher then the Tories on Benefits ......" (http://www.theguardian.com/politics/2013/oct/12/labour-benefits-tories-labour-rachel-reeves-welfare)

Before the election, Rachel Reeves promised “Labour will be tougher then the Tories on Benefits ……” (http://www.theguardian.com/politics/2013/oct/12/labour-benefits-tories-labour-rachel-reeves-welfare)

Thankfully, as well, we’re delighted that the hunting ban has been confirmed to continue, and all culling of badgers has been stopped however the culling of disabled people through the new Work Capability Assessments carried out by Maximus – Same Circus, Different Clowns - continues unabated. The DWP as usual have refused to release figures of how many disabled people have died as a result of this process since the Labour government came to power. Disabled people also continue to be disproportionately sanctioned for failing to meet the conditionality in the WRAG as well as those flung onto JSA. Unqualified Job centre staff are free to decide which disabled people can be left to starve and for how long. But we are all so pleased dogs and cats now have a right to at least one meal a day. Tesco’s should also be applauded for continuing to collect food for us in their shops next to their baskets collecting cat and dog food. We do love being passive recipients of charity and being made to feel so thankful for any scraps thrown our way.

David Freud has now also returned to the Labour fold as a Labour Lord advising on benefits reform.

David Freud has now also returned to the Labour fold as a Labour Lord advising on benefit reform.

Of course David Freud has now also returned to the Labour fold as a Labour Lord advising on benefits reform. He has recommended to a Labour government bent on imposing further and harsher austerity measures that any disabled person in work should only be paid a maximum rate of £2 per hour since we are worth so much less to employers than non-disabled people. Since the alternative to this for many of us is unpaid work placements we are of course willing to accept this meagre rate if it allows us to be more employable.

 

Who 2 Vote 4 Logo

 

Mar 072014
 

photoThe Tory Government’s callous decision to continue with the closure of the Independent Living Fund, announced today by Mike Penning represents a further ideologically driven attack on the quality of life of all but the richest UK citizens.

For those people who rely on the fund for their care and support, the prospect of the devolution of such care to Local Authority adult care provision is harrowing indeed.

One ILF recipient, Mary Laver, made a video about what her life would be like without the ILF. You can see it here: http://www.youtube.com/watch?v=XLPA96k1oaE

What is most illustrative about this video, to me, is not her condition as presented in the video, nor the fact that a woman like Mary could not possibly have been an Olympic Torch Bearer without the help of the fund, but a single sentence she uttered after watching the video of herself in the Houses of Parliament last November. It spoke volumes. She said “I never realized how disabled I am until I saw that.”

Another, perhaps better known ILF recipient is actor and comedian Liz Carr who plays Clarissa Mullery in BBC’s Silent Witness. She says  “The closure of the Independent Living Fund will inevitably lead to the erosion of  independence, inclusion and freedom for disabled people who have high levels of need.  I am one of the 18,000 people in the UK who receive support from the ILF and it is this funding to pay people to do the things I physically can’t do which enables me to get up in the morning, work and have the same kinds of opportunities as everyone else.  I don’t think I’m being overdramatic when I say that today’s news is devastating to those of us whose lives and existence owes a great deal to the Independent Living Fund.  How can already strapped for cash Local authorities take up the slack when the Fund closes in the summer of 2015?  How many of us are going to lose our independence as residential care provides a more cost effective option?  A future without the ILF is terrifying.”

Merry Cross of DPAC and Left Unity says that the decision is “the worst example of the hypocysy asnd lies that Cameron has come out with since he took office in 2010, claiming that he would be protecting ‘the poorest, the most vulnerable, the elderly, the frail’. The intention is to destroy Local Authorities as part of the privatisation agenda. I can’t think of a single reason why any disabled person would be reassured by that statement at the end of the press release that the government “‘want to make sure that disabled people are given the support that allows them to fulfil their potential’” and I can’t think of a single reason why any disabled person would feel anything other than terror and horror. I’d say the governmentt commitment to disabled people is as shallow as its commitment to the pockets of its rich friends is deep.”

That is the truth at the heart of the matter. Withdrawing this lifeline from those of us who need it is sentencing us to a life inside the sterilized walls of a local authority Care Home, or imprisonment within the no less confining walls of our own homes, granted “care” in such meager doses as to deny us the dignity of choosing our own time of rising, sleeping, eating or even the voluntary usage of such necessities as the toilet.

The Court of Appeal found the decision of the Tory Government to close the Independent Living Fund unlawful last November on the grounds that the duty of the government to promote equality had been neglected. The judges found that the DWP had failed to fulfil its duty, under section 149 of the Equality Act 2010, to have “due regard” to the need to promote equality of opportunity between disabled and non-disabled people in its decision to close the fund. It was found that briefings given to then disability minister Esther McVey by officials did not adequately make clear “the potentially very grave impact” the closure of the ILF could have on service users and that whereas responses to the consultation indicated that “independent living might well be put seriously in jeopardy for a large number of people”, this was not conveyed to the minister in clear terms.

To callously strip disabled people of their most basic freedoms cannot by any reasonable person be considered a promotion of equality.

We would thus urge persons of conscience, politicians, and organizations concerned with any and all human rights to join us in the condemnation of this policy and to support the next steps in challenging the manifest sadism of a government bent on imposing destitution and despair on the populace.

Campaigners will continue to fight the closure. DPAC’s Ellen Clifford said, “The fight continues. We are seeing the impact of the closure on 2010 and how local authority support is failing to meet the needs and rights of disabled people under the UN Convention on the Rights of Persons with Disabilities. The strength and resolve of grassroots disabled people got us this far and we are not giving up now. This has never just been about protecting support for existing ILF recipients, however important that certainly is, but it is also about the fundamental right to independent living for all disabled people.”

Article by Conan Doyle

Photo from Rockinpaddy touring with Graeae’s Threepenny Opera

 
Nov 092013
 

•             The   Condem Government claimed that the Henwood and Hudson Review of the Independent   Living Fund (ILF) 2007 found it unsustainable and supports their proposals   for its functions to be assumed by Local Authorities.

•             Analysis   of the Review reveals a number of limitations which renders it an inadequate   basis on which to build government policy on the scale that closing the ILF   entails.

•             The   value-base for the Review is founded in an understanding of a shared   commitment to independent living that cannot be assumed in our current   political climate.

•             The   Review compares an evidence-based assessment of the inadequacies of the ILF   against the theorisation of cutting edge personalisation without   acknowledging the barriers to realistic implementation of the latter.

•             The   main arguments used in the Review to point to inadequacies in the ILF could   equally and in fact more strongly be applied to the idea of Local Authorities   assuming its functions. These are inequity, lack of transparency,   inaccessibility and self-determination. In this way the Review fails to support   current government proposals for the future of the ILF.

•             Rather   than finding the ILF unsustainable, the Review made a number of   recommendations which would have required substantial extra funding in order   to be implemented.

•             The   gap in support provision for disabled people to live in the community with   the closure of the ILF contravenes Article 19 of the UN Convention on the   Rights of Persons with Disabilities and evidence from different local   authority areas is already showing the impact of this.

Introduction

As campaigners question the government over plans to on the Independent Living Fund, we are being told the findings of the Henwood and Hudson Review in 2007 justify the proposals. In a response to one of his constituents Michael Ellis MP referred to “the independent review carried out under Labour” as not “outdated” and as supporting the opinion of the former Minister for Disabled People Maria Miller that the Fund is unsustainable[1]. Henwood and Hudson have themselves written that whereas the previous government failed to act on their report, “the coalition government should be congratulated for these first steps towards a principled and strategic decision about the future of the fund”[2]. There are a number of problems with using the Review as a basis for the decision to close the Fund: the review itself was flawed which leaves its findings open to challenge, the social care context within which the Review was written is certainly now outdated and renders the conclusions of the Review irrelevant to the current state of support provision for disabled people, and finally, the Review never made the recommendations some members of government claimed it did.

 

Limitations of the Consultation Process

The Henwood and Hudson Review is being used to justify changes that risk pushing back the rights of disabled people decades. For measures with such a potentially large impact the consultation process on which the Review was based was not nearly vigorous enough. The authors were given 6 months to complete the report. The consultation methodology included a formal call for evidence, 6 consultation meetings at different locations around the country, and an analysis of written submissions. The meetings were attended by 120 ILF users and their families and a total of 385 written submissions were received, of which 212 were from ILF service users and their families. Although it is likely there was some overlap between the individuals who attended the meetings and those who sent in written submissions, even if we assume there was input into the consultation from a total of 332 ILF recipients and their families, this still only represents just 0.28% of the 18,761 total number of people receiving ILF when the report was written. Disabled people at the time questioned the accessibility of the process, reliant as it was on an individual’s ability to either submit written evidence or to attend in person at a meeting at a set location on a set day. A lack of more accessible engagement methods restricted the inclusion of disabled people within the consultation process.

The involvement of other stakeholders in the consultation process was also limited. ILF staff have reported they barely even knew the Henwood and Hudson Review was being carried out, let alone were included in giving their views to it and the reviewers, presumably on orders from the Department for Work and Pensions (DWP), also refused to meet with Trustees. Moreover disabled people ineligible for ILF were not interviewed, thus failing to consider a wide range of views and experiences sufficient to consider the ILF within the wider context of independent living for disabled people. Local Authorities were invited to comment on their experiences with the ILF but not on the idea of its functions being transferred to them. A number complained about social workers having to provide support to disabled people in accessing the ILF. Such views do not suggest a willingness to take over from the ILF.

The closure of the Independent Living Fund has wide implications encompassing all support provision for disabled people and our very position in society, however the rigours of the consultation process were more suited for an internal review than for something of this magnitude. Consultation questions focused on the following questions:

–          Whether the ILF is the best way of providing support.

–          If not, whether a different model is required.

–          What – if any – changes might be needed to improve the way the ILF operates[3].

The inadequacies of the ILF are analysed in detail and then compared against the theoretical advantages of other cash for care systems without an evidence-base for how these other systems work in practice. At the time of the Review Individual Budget pilots were only just underway but Direct Payments had been around for many years and yet the Report fails to provide any analysis of the success or otherwise of Direct Payments implementation by Local Authorities. Such an analysis would have warned against an increase in the role of Local Authorities in provision of social care support for disabled people.

 Henwood and Hudson are open that their Review was founded in a value base which promotes self-determination for disabled people. Few people would argue against the principles of choice and control. However the balance of evidence and value base is not equally distributed through the Report: criticisms of the ILF are made on an evidence-basis yet the advantages of other cash for care systems are given from a theoretical value base alone. The Review therefore provides insufficient grounds on which to base a recommendation for integration with those other systems.

 The Review is based on the assumption of a commitment to independent living for disabled people which reflects the optimism of the time when the report was written but which under this current political climate is now outdated. Despite feedback from ILF users and their families about the many positive aspects of the ILF these are insufficiently highlighted within the body of the Report, the Review being focused on improvements to the ILF rather than on defending the need for independent living support itself. Evidence collected from ILF recipients included in Appendix 2 of the report gives testimony to the significant impact that the ILF has had on the lives of individual disabled people and supports the continuing need for the ILF despite developments in other areas of social care. One person is quoted as saying “Before ILF I was treated like a child; now I am treated like an adult”[4].

 The recommendations of the review are focused on driving forward change as part of the personalisation agenda. Although the importance of the ILF can be gauged through what is recorded in the Report of the views of ILF recipients themselves, the actual findings of the report fail to give sufficient recognition to the successes of the ILF. For example, criticisms are made of a lack of flexibility and recommendations made for lighter touch monitoring but by comparison to many local authorities, ILF has been way ahead in these respects. Another serious omission is the importance of the ILF in leveraging support from Adult Social Care. The ILF has attempted to drive up standards from local authorities by expecting minimum input in cash terms and setting standards (for example by insisting on one to one support in supported living) before becoming involved in funding a package of support[5]. Perspectives such as this would be unlikely to come from Local Authorities or be known to individual ILF recipients and absence from the Review can be attributed to a failure to consult with ILF staff.

 Taken on their own, the findings of the review present a picture of an anachronistic and irrelevant institution, a picture which is at odds with the needs and experiences of disabled people themselves when put in the wider context of independent living support.

 To date there has been no consultation on alternatives to the ILF, an issue perceived by campaigners as a classic example of siloed government policy and evidence of the Minister for Disabled People being first and foremost a DWP Minister rather than cross-government The Henwood and Hudson consultation asked whether a different model was required but did not consult in detail on proposed alternatives and stakeholders including disabled people and their families, as well as Local Authorities who are being proposed to take over administration of the ILF monies are still waiting for this opportunity. Consultation on alternatives may have been beyond the remit of the reviewers but not beyond the remit of the DWP. Former minister for Disabled People, Maria Miller said that there would be a full UK wide public consultation to take place alongside publication of the government white paper on the future of the care and support system in England. Disabled people were concerned that with such a large brief as the reform of the whole care and support system, that the ILF will only be considered as a side issue within the wider consultation and will miss out on the level of attention the question of its future deserves. Meanwhile ILF Trustees took the opportunity of commenting on the Green Paper ‘Caring for our Future’ to express their conviction that a national body is needed to take over from the ILF and that integration through Local Authority budgets would be unwise.

 Based on an outdated vision of social care

The Review was carried out at a time of progress within the development of personal budgets and the authors’ analysis is based upon an assumption of continued development that has proved incorrect. In their conclusions Henwood and Hudson cite the necessity of “second guessing emergent policy change”[6].  Unfortunately they second-guessed wrong. Our present government uses austerity as an excuse but analysis of current disability policy and its beginnings within the neo-liberal approaches of New Labour reveal an ideological basis for removing rather than improving support for disabled people. Developments in personalised support for disabled people have not only stalled, they are purposefully being taken backwards. The Report mentions more modern ‘cash for care’ systems such as In Control and individual budget pilots[7].  In 2006 there was an optimism that such systems represented the future for social care. However in 2012 we see areas of the country still without a Resource Allocation System or equivalent and no plans to ever have one, we see local authorities introducing caps to personal budgets with residential care being promoted as an option for anyone with higher support needs[8] and we see ever tightening eligibility criteria coupled with increased care charges. The authors of the Report openly acknowledged that their analysis was “explicitly value-based as well as evidence-based”[9] but unfortunately by assuming a context of shared values, it is not able to offer the defence of those values that we need at this present time.

 If we look at the reasons given by Henwood and Hudson as evidence of the need to reform the ILF, those same reasons taken within the present climate would in fact argue against closure of the Fund to be replaced with integration into Local Authority social care systems. They cite inequity, transparency, accessibility, self-determination and flexibility as areas necessitating change. Maria Miller asserted that Local Authority social care systems would present an alternative:

“The outcomes that [the ILF] supported can now be delivered within the Local Authority managed care and support system through personal budgets and direct payments[10].”

Evidence from the practical application of personal budgets and direct payments systems and disabled people’s experience of these provide a strong basis for arguing that not only will Miller’s proposed alternative fail to address the areas identified by the Review as needing improvement but it will make them worse.

 

 Inequity

The Review points to a lack of access to ILF for certain groups of disabled people as evidence of inequity. The authors write “We conclude that the ILF is characterised by an unacceptably high level of inequity that must be addressed as a matter of the utmost urgency.[11]” Examples of inequity cited are the restriction of the Fund to a range of disabled people including anyone applying aged 66 or over, people with terminal illness with less than six months to live, disabled parents, disabled people from Black and Ethnic Minority Communities and those with the highest support needs (by imposing a weekly limit on how much support can be funded).  The Review criticises the need for ILF applicants to be in receipt of Higher Rate Disability Living Allowance pointing to how this is discriminatory against certain groups of disabled people including those with mental health support needs, people with learning disabilities, people with Asperger’s Syndrome and people who are blind or partially sighted. Henwood and Hudson recommend “that the DWP should…  explore the simplification of ILF eligibility in order to remove the multiple layers of qualification that are required.[12]”  Instead, following the Review and shortly before the Fund was shut to new applicants it was further restricted introducing new eligibility criteria for applicants to be in employment for 16 or more hours per week and raising the Local Authority contribution to £340 per week, sparking anger and outrage and calls for the ILF “to be scrapped”[13].

The imposition of multiple layers of eligibility reflects the success rather than a failing of the ILF. The failing is the government’s unwillingness to invest in independent living support the amount needed to provide equal life chances for all disabled people, despite the economic case for independent living having been well established[14].  By 1992, over 22,000 people were receiving an ILF grant and the original £5million budget had reached £97 million. Morris writes that “instead of welcoming the success of the policy, the government’s response to the larger numbers of people successfully claiming than expected, was to attempt to reduce the numbers of people qualifying.[15]”, a situation similar to the monetary driver we are currently seeing behind the reform of Disability Living Allowance. A recurrent theme described by Henwood and Hudson is a perception of the ILF as ‘secret money’[16] as a result of a deliberate lack of promotion and the difficulty in finding out about it. Access to Work, the government programme providing support for disabled people in mainstream employment is often similarly described as a well-kept secret, but by contrast no one calls for the closure of Access to Work. Instead disabled people call for greater investment in the programme[17]. The Review itself strongly recommends extension of the ILF. Henwood and Hudson write, “we received an overwhelming view that the continued exclusion of older people from ILF support is unduly inequitable[18]”. They also recommend the removal of the ceiling cap on weekly entitlements[19] and to allow applications from those on Middle Rate Disability Living Allowance[20]. Rather than pointing to the financial unsustainability of the ILF as government members are claiming[21], the Henwood and Hudson Review calls for greater investment as part of “a broadening and deepening of the ILF role.[22]

 

Transparency

 A lack of transparency is criticised within the Review which found considerable shortcomings in the ILFs approach to user involvement and a lack of transparency and accountability in its decision making. Henwood and Hudson write:

“It became apparent in the course of the review that people’s experience of the ILF is often far from transparent: they do not know how their money has been calculated or how it should be; they have little knowledge of how the ILF operates as an organisation and who makes the decisions; and they are uncertain about whether and how they can challenge those decisions.[23]

In response to the Review, the ILF improved its user involvement structures with the introduction of a user led advisory group, and produced a new suite of information about all ILF workings and rules that has been well received for its clarity and accessibility. The review also forced the DWP to ease off its heavily constricting approach to the ILF in terms of allowing it to have any kind of communications or engagement function as a discrete organisation, which pre-review had made it almost impossible to be accountable to disabled people. Ironically many of the recommendations in the review had been made to DWP by ILF trustees for years and were ignored. Such improvements did not go as far as critics of the ILF wanted, calling for the Fund to be “scrapped and replaced by a new organisation led by service users and social workers alike”[24]. It is nevertheless more user led and transparent than most Local Authority run social care where personal budgets and support plans are frequently agreed under the discretion of a non-user led panel and rarely involve disabled people in the decision-making process. With regards to user involvement and transparency closure of the ILF and integration with personal budgets again fails to address but would instead compound the shortcomings identified by Henwood and Hudson.

Accessibility

 The Review criticises the ILF for being of restricted access to disabled people and subject to a postcode lottery of eligibility. This is attributed to the requirement introduced in 1993 that applicants must be in receipt of a designated level of social care support. Henwood and Hudson write, “The requirement for ILF recipients to be in receipt of at least £200 worth of local authority social services support (or the cash equivalent) is a further dimension of the eligibility criteria which can significantly restrict access[25]” and they cite the difficulties of qualifying for social care support under Fair Access to Care Services policies. The difficulties and variability of access to independent living support through Local Authorities is well documented. Barnes writes:

“Access to direct payments and user led support is nothing less than a post code lottery and contradicts directly all recent government rhetoric espousing the need for independent living and equal opportunities for disabled people.[26]

Elsewhere he attributes local variation to a range of factors including the on-going commitment of local politicians and councillors to traditional professionally led services, limited budgets, labour union concerns, lack of support by care managers and some professionals, inconsistencies in assessment procedures and a chronic shortage of well-resourced local PA user support groups in many areas[27]. Given the problem of “local variability” Henwood and Hudson recommend that “the Government prepares the ground for the eventuality of a national RAS [Resource Allocation System]” and the Review stresses the importance of a central lead in calculating eligibility[28]. This finding not only fails to support but presents a stark contrast to the emphasis of current government policy on local accountability and to the suggestion that Local Authority social care systems are sufficiently advanced to take on the additional functions of the ILF. 

Whilst the government were pushing ahead with integration of the ILF, its plans were within the context of localism and signified a move away from rather than towards centralisation of social care eligibility. Maria Miller said it is “our assessment” that such a large amount of public money can no longer be administered outside of statutory systems “in line with local priorities and accountable to local communities[29]”. The Condem government’s determined pursuit of a localism agenda presents a significant threat to the rights of disabled people to be an equal part of the community; without central intervention to uphold social justice local elites will not choose to invest resources in a group of people who fail to fit within traditional social values. The Dilnot Commission’s proposal for a national eligibility will not guarantee national equity. As Henwood herself says “Even if a national eligibility threshold is to be established, it would still be a matter for local authorities to make decisions about how they respond to people with a given level of need[30]”. On the other hand the ILF provided a much valued and “unusual[31]” example of national portability which could usefully inform future developments in social care with its ability to work effectively and consistently while combining national consistency whilst working in partnership with differing Local Authority policies[32]. Within the current context of localism it is something very different to advocate for the closure of the Independent Living Fund than it was in 2007 and it is important that the legacy of the ILF is captured if disabled people’s experience of not to be lost

Review findings in relation to accessibility do not support an argument that the ILF would be better administered through Local Authorities.  Consultation feedback cited in the Report shows ILF review procedures to be preferred by and in advance of Local Authority systems:

“Many people reported favourable experiences of their contact with ILF Assessors (ILFAs). In our summary of messages from the consultation exercises we noted that: “ILF assessors were seen as knowledgeable, friendly and helpful people who approached the assessment as a two-way discussion and who went out of their way to be helpful and to try to ensure that all needs were taken into account.” We noted also in the same report that many people contrasted this with their experience of assessment from social services, with the latter often seen as simply trying to limit what support or funding people would be given.[33]

Similarly:

“The actual review process followed by the ILF was generally commented upon favourably, and this reflects the positive experiences which many ILF users report of the ILF Assessors (ILFAs) who generally approach assessment and review in a friendly and accessible manner (“personable, approachable and very professional”). This conversational approach was often compared with a more ‘tick box’ experience of local authority social services. As an ILF user remarked at one of the consultation meetings, ILFAs are ‘people-people, not paper-people’. Continuity of ILFAs from one review to another was seen as particularly helpful.[34]

The superiority of services provided by the ILF prompted Henwood and Hudson to even raise the “issue of the desirability of the ILF taking the lead on all assessments for ILF and Direct Payments”[35], thereby allocating Local Authority responsibilities to the ILF rather than the other way around.

Criticisms made by the Report of ILF accessibility could equally be levelled against Local Authorities including a lack of user-friendly information (both information packs and website), the length of time for applications to be processed and irregular reviews. At a Local Authority level this situation is set to become even worse through further cut-backs with social workers already stretched beyond capacity. A recent investigation by the British Association of Social Workers (BASW) found that 85% of social workers have seen notable cuts to services in the last 12 months. Two-thirds of the 1,100 respondents said they were concerned about the impact of unmanageable caseloads on their ability to deliver services[36]. It is difficult to reconcile the evidence from the coalface of Local Authority managed Adult Social Care with the Minister’s assertion that “there has been a significant development in the mainstream social care system since the Fund was established”[37] sufficient for the ILF to be adequately administered through Local Authorities.

The Review refers to the difficulties experienced by disabled people in having to negotiate separate and often inconsistent systems in order to obtain the support they need but this is not sufficient justification for closing the ILF support stream. Henwood and Hudson write, “it is wrong that individuals should have to understand and adhere to different operating systems and cope with all the accompanying confusion, bureaucracy and stress”[38] and they refer to different and contradictory operating systems in respect of issues such as charging, the treatment of benefits, occupational pensions, capital limits and upratings. Alternatives suggested by government included the  idea of a single integrated system under Local Authority control, although Government swerved the decision on future funding of social care by leaving it out of the Queen’s Speech.

 The reality of an integrated system will be a system that fails to provide an equivalent level of support to that offered by the previous dual and arguably duplicated systems. This idea is supported by direct experiences of Local Authority social care provision. In their response to the Green Paper ‘Caring for our Future’ the ILF Trustees and senior management commented:

“Our experience suggests that whilst many Local Authorities have a clear commitment to independent living, local authorities in general are increasingly and understandably focussed upon essential basic care and not upon full independent living for their service users, often being confined to meeting only critical needs other than when engaged in a joint package with the ILF.”

The reality of the limitations of a single, mainstreamed support package has been put forward by the Association of Directors of Adult Social Services who told the Joint Committee on Human Rights Inquiry into Independent Living that, “in the current climate, they are unlikely to provide replacement funding for all those who would previously have qualified for ILF grants.[39]

Also they will have to review everyone under Fair Access to Care Services, not ILF criteria. Further proof of this reality is borne out by an assessment of the relative costings involved: whereas the ILF runs on a remarkably low percentage of overheads to total budget of around 2%[40], Local Authority administration will take up a notably higher proportion of the budget, thus diverting funds away from support for disabled people. In a recent survey undertaken by DPAC, out of 20 Local Authorities questioned, not one had overheads for the administration of personal budgets below 10% and the highest was 24%[41].Given the choice most disabled people would elect to continue with the frustrations of managing two separate systems if it means holding on to more of the support needed to continue living in the community.

Self-determination

The Review identifies self-determination as an area in which the ILF does not perform well when compared to cutting edge policy but ignores the reality of Adult Social Care practice as experienced in the day to day lives of disabled people. Henwood and Hudson write “Our evidence does not indicate that the ILF performs well against such criteria, particularly in comparison with the leading edge of policy and practice that is apparent elsewhere (notably in the approach of In Control).[42]” Self-determination is described as making choice a reality, requiring the development of life planning, user-led support systems, self-assessment, and resource allocation systems. At the time of carrying out the Review Individual Budget pilots were new, however there was ample evidence of the failure by Local Authorities to translate the theoretical framework of choice and control offered by Direct Payments into actuality for all but a small percentage of disabled people[43]. This should have stood as a warning against assumptions that cutting edge models of best practice would inevitably lead to general best practice. In December 2011 ILF Trustees estimated that some 60% of ILF users were still not in receipt of a Direct Payment from their Local Authority with this rate varying significantly in different areas of the UK and for different impairment groups. They commented: “This suggests that there is a long way to go before all social service users are able to exercise full choice and control over their care arrangements, and that this will continue to be a brake on the roll out of personal budgets.[44]

 Given the dramatic variation in the roll out of personal budgets from area to area it is not only unfair but inappropriate to compare the ILF against best practice in Adult Social Care as this presents a picture of inadequacy that is at odds with the experiences of many ILF recipients. Henwood and Hudson conceded that many ILF recipients spoke highly of the positive impact the Fund had had on their lives, including quotes from disabled people saying such things as “The ILF means I can get my life back” and “ILF allows you to live the life you want”[45] . The experiences of members of the campaign Disabled People Against Cuts (DPAC) are similar as reflected by the personal account included below:

Juliet’s Story – the importance of ILF funded support

 I am 26 years old. My life changed when Rheumatoid Arthritis took hold meaning that I had to drop out of art school. My health deteriorated drastically and I lost all my mobility, I couldn’t walk or get out of bed because of pain or the discomfort of my swollen joints, and I couldn’t even do the simplest of tasks anymore.

 My family weren’t able to cope and I was given basic care from social services which consisted of 1 hour for the morning call to get me up, bath me, take me to the toilet, dress me and feed me. The lunch time call was 30 minutes; to make me lunch, help me to eat and take me to the toilet.

Even though I had this care in place my problems got worse; I lost so much weight combined with spending every day in bed put me at higher risk of developing bed sores. I spent all day everyday in my room, each day blurring into the next making me feel depressed, isolated and alone. I was just wasting away in my bed. This caused muscle wastage; I slowly lost all the muscles used to maintain balance and to walk making me more prone to falls. I didn’t recognise myself; I felt like I was cocooned in the shell of my body feeling helpless, this caused panic attacks.

 All of this put a strain on my home and social life. Before I had ILF my parents who both work full time had to help me with the most basic of tasks (getting undressed, eating dinner, assistance getting to bathroom during the night) making me feel like a burden to my own family. My social life hit a stand still as I was unable to go out and meet friends as I was to unwell to really leave the house.

 I felt like a prisoner stuck in a body that wouldn’t work, my life was restricted to my bedroom unable to eat, walk, use the toilet, even breathing and sleeping was agonizing.

 Once I got ILF, I used the extra hours of support to go to hydrotherapy and physiotherapy to build up my muscle strength. I slowly got my balance back lowering my risk of falls and gradually improved my walking meaning I wasn’t as reliant on my wheelchair and no longer at risk of bed sores as well as no longer had panic attacks about falling. I also used the extra support to get out of the house and see friends, go shopping and go to the cinema, which improved my relationships with my friends and family. I was part of the world again. I also used the extra support to help me give back to my family by making them a meal every now and then and no longer relied on my family for so much which meant I didn’t feel like a burden anymore, this improved my home life a great deal.

 As my confidence grew I used my extra support to help me attend a local committee for disabled people where I volunteered. This gave me purpose in life, opportunity to meet new people, make friends and the experience I needed to get the job I have today. I wouldn’t have been able to do all of this without the extra hours of support that I received from ILF. The basic care given by the local authority is to maintain your primary needs to survive (washing, dressing and eating). But life is so much more than that. With ILF I have quality of life and support to be a pro-active, positive person who is part of the community. I have a paid job, a social life, I am driving and I have just moved into a flat with my fiancé. I would not change being disabled and I think my condition has brought more to my life than it has taken away but it has only been possible for me to feel this way because I have the support I need.

 One key component necessary for self-determination cited by Henwood and Hudson is under increasing threat from current government cutbacks; they point to the importance of user led organisations including CILs, acknowledging  a clear correlation between direct payment support services controlled and run by disabled people and successful implementation of a direct payments strategy, and recommending “that the Government’s commitment in the Life Chances report to creating a user-led organisation modelled on existing CILs in each locality by 2010 be firmly implemented”[46]. In reality not only was the 2010 deadline not met, existing user led organisations are under increasing threat both from the continued marketization of disability support services and from spending cuts. In 2007 Barnes described how “local and national user led organisations are severely disadvantaged in the increasingly competitive market for local and national contracts for independent living and direct payment services”[47] and by 2012 the situation has only grown worse.  A recent survey by Inclusion London found that 1 in 5 Deaf and Disabled People’s Organisations in the capital facing closure as a result of cutbacks[48]. The launch in June 2011 of the Office for Disability Issues Strengthening User Led Disabled People’s Organisations programme and accompanying Facilitation Fund has done little to alleviate the problem with a maximum award of £30,000 over 3 years, restrictions that preclude spend on items including staff costs and a requirement to invoice with proof of payment rather than in advance. The importance of user led brokerage and peer support services for effective implementation of personal budgets is well evidenced[49] and the struggle for survival facing many user led organisations is yet another factor jeopardising the successful roll out of personalisation in Adult Social Care. The capacity of Adult Social Care to perform under criteria relating to self-determination is at this present time questionable at best and arguably far more questionable than the ILFs. 

Flexibility

A lack of flexibility is raised by the Review as a problem area for the LF and the Report criticises the ILF for being prescriptive on what it will fund. In conducting their Review the authors state that “it was clear that restrictions on what ILF funding can be used for limits the flexibility that people require and effectively constrains the choices they are able to make.”[50] The ILF’s focus on ‘objective costing’ is judged to be incompatible with the outcomes focus of Individual Budgets which allows more flexibility than the ILF’s limitation to spend on Personal Care and Domestic Assistance. 

In reality Local Authorities are not following the ideal, flexible model of Individual Budgets against which the Review compares the ILF. They are also guilty of being prescriptive in what they will fund and increasingly so under austerity pressures. The theory of the In Control model was that Individual Budgets could be used for whatever disabled people chose so long as it was agreed within a support plan, enabled them to meet their identified outcomes and was not for anything illegal, not for rent or mortgages, bills or groceries. How this works in practice varies from area to area. It was always a difficult concept for risk-averse Local Authorities to grapple with but now that Local Authorities are desperately searching for savings in their social care budgets, the direction of travel is for personal budgets becoming more not less prescriptive. In London Borough of Bromley personal budgets are rarely agreed for expenditure on anything other than personal care with disabled people reliant on the ILF for any wider independent living support. In various areas including London Borough of Newham support plans that budget for travel costs are routinely turned down on the basis that DLA mobility component already covers travel. In Leicester the local CIL challenged a similar policy which regarded the use of personal budgets for travel costs as ‘double funding’ but the lack of lack of objective costing used through the RAS system allows people’s packages to be cut or set at an inadequate level without a rationale for doing so. The recent judgement in R(KM) v Cambridgeshire County Council was about the RAS not being transparent[51] whilst a recent poll by Community Care found that 48% of social workers consider personal budgets to be set at too low a monetary value to achieve personalisation[52]. Since the Review the ILF has on the other hand become less prescriptive as a result of its inclusion as part of the Individual Budget pilots and the failed Right to Control Trailblazers. A lack of flexibility in how ILF monies can be spent on support for disabled people fails to provide adequate justification for closure of the Fund and for re-routing through Local Authorities when the ILF is compared not to the theory of In Control but to how personal budgets are working in practice.

Discrepancy between Government Proposals and Review findings

The Review’s longer term recommendation that the Independent Living Fund should be closed was based on a view that it was anomalous and its functions needed to be integrated into a wider, more streamlined system of independent living support that is more able to deliver the portability and consistency that disabled people valued in the ILF. The Report points to areas of learning for any integrated system from the expertise of the ILF with regards to its national portability and the approach of ILF assessors preferred by many disabled people to that of their social workers. Although the anomalies of the ILF being a discretionary trust are recommended for attention, the Review finds that reporting and accounting for the functions of the ILF should remain within the DWP[53].

The Review does not recommend that the ILF should close and its role be taken over by Local Authorities in line with local priorities and local accountability. Maria Miller asserted that “The outcomes that [the ILF] supported can now be delivered within the Local Authority managed care and support system through personal budgets and direct payments[54]”. The Review does not support this claim with its criticism of postcode eligibility and calls for a national RAS[55] and is more cautious in its approach: “We recommend that no immediate transfer of ILF funding and remit is made to local government, but in our Review of the Independent Living Funds conclusions we recommend that in the medium term there should be full integration with Individual Budgets.[56]

The Review did not find the ILF financially unsustainable. Michael Ellis MP asserted that the current government’s opinion that the ILF is financially unsustainable was shared by Henwood and Hudson[57]. In fact, some of the Henwood and Hudson Report recommendations would have required significant additional expenditure by government, including extending eligibility to recipients of the Middle Rate Care Component of Disability Living Allowance as well as older people and those with terminal illness and less than six months to live.

The Review did make a number of recommendations which were never actioned. There has been no explanation for how Henwood and Hudson’s ‘under-pinning assumption’ that there should be “no loss of service for ILF users”[58] can be reconciled with proposals for Local Authorities to take over administering the Fund. Any analysis of the figures argues against the possibility of government being able to ensure this whilst pursuing their current course. We have already mentioned that the recommendation to implement recommendation 4.3 of the Improving Life Chances report, to ensure there was a user led organisation on the model of a centre for independent living in every local area, was missed. Recommendations which would have had financial implications were also ignored including work on removing the joint ceiling cap, making ILF funding available to support disabled people in their parenting roles, removing the requirement to take a partner’s benefits capital into account in assessing for ILF eligibility, disregarding Disabled Students Grant and any loan in calculating an ILF award, and taking account of the costs disabled parents face if their children are in further or higher education. That none of the groups of people who would have been affected by the above recommendations will benefit from the ILF’s integration into Adult Social Care is a surety with awards subject to the multiple limitations of FACS, charging and ever decreasing budgets.

Henwood and Hudson are happy to go along with government claims that current policy with respect to the ILF is underpinned by their Review. In a written ministerial statement on 13 December 2010, Maria Miller announced that following consultation it had been concluded “that the model of the ILF as an independent discretionary trust delivering social care is financially unsustainable”. In an article in Community Care Henwood and Hudson pointed to how this decision reflected the core conclusion of their Review “that it is highly anomalous for significant amounts of public money to be placed in the hands of a cash-limited, discretionary fund administered by a board of trustees.[59]” It should be noted that nobody, including the trustees, has ever argued that a discretionary trust is the most appropriate way to deliver ILF support by the way. As we have seen, a closer examination not only of their actual findings but crucially of the value base underpinning the Review as compared to government proposals for the future of the ILF reveals less of a fit than either they or government would have us believe.

Conclusion: What is at stake and what we need

The scale of what is at stake for disabled people with the loss of the ILF is overwhelming, both at an individual level in terms of loss of autonomy and the choice to live in the community and politically in terms of the position of disabled people in society and our right to citizenship. By comparison, issues around how the trust is administered and duplication of systems pales into insignificance.  Do disabled people really care how many people are signing off pieces of paper when they are being forced out of their homes into residential care, when disabled young people unable to apply for ILF are seeing a future ahead devoid of independence and any of the life chances enjoyed by their non-disabled peers?  If Henwood and Hudson want to take credit for bringing about this situation then more fool them. Congratulating the government on the decision to take action over the ILF will not persuade them to be any more careful with protecting against loss of service for the existing ILF recipients and will do nothing to influence translation of rhetoric about establishing national equity in social care into any sort of reality. This government is set on pushing through reform based on clear ideological agendas: their determination on the one hand to undermine the welfare state and remove entitlement to state support and on the other to promote localism. The ILF does not fit with these agendas and closing it is a way to save money. The interests of disabled people are about as far from the government’s plans for the ILF as they could be.

The current situation whereby the ILF has closed to new applicants with no alternative put in its place is already having an impact which sees the UK government in breach of the rights of disabled people under Article 19 of the UN Convention on the Rights of People with Disabilities and the rights for disabled people to live in the community with equal choices, to choose where and how they live, to have the support they need in order not to be socially isolated or segregated and to have equal access to community services. Worcestershire and Newcastle are examples of Councils proposing to cap the amount they will pay for community-based support for disabled people, forcing disabled people with needs in excess of the cap to either rely on family support or to have to move into residential care. ILF Trustees and Senior Managers have reported that “Local authority representatives have told us that supported living placements for this group are becoming harder to finance since ILF stopped accepting applications, and that the removal of the ILF as exemplary provider of new large support packages is helping to reinforce a local view that Councils can now ignore this aspect of equality for disabled people with their non-disabled colleagues”[60]. However there is no statistical evidence on what is happening to disabled people who would previously have been eligible for ILF and the impact of the closure from March 2010 because, as DPAC has uncovered through surveying Local Authorities, no one is monitoring this. It is clear that Local Authorities are not prepared to make up the difference: Birmingham stated “The Council does not make up any difference in funding” while Northampton referred to finding ways to enable disabled people to meet their needs (previously covered by the ILF) themselves![61]

To date there has been no adequate consultation or review on which to justifiably base a decision to firstly close the ILF and then to transfer its functions to Local Authorities. The Henwood and Hudson Review concentrated on improvements needed within the internal operational and strategic workings of the ILF and lacked any satisfactory evidence-based analysis of the place of the ILF within the context of wider social care and support systems. They concluded that the set up of the ILF resulted in “inequity, lack of accountability, overlap and duplication of functions, arbitrary decisions and major confusion for disabled people seeking support for independent living”[62]. All evidence points to the fact that these failings will not be addressed by transfer to Local Authority administration, they will be severely compounded. The former Minister spoke about the need for “the social care support needs of all disabled people to be delivered equitably as part of local authorities’ broader independent living strategies” but how this can be achieved within a localism agenda and “in line with local priorities and local accountability” is doubtful[63]. In a more recent Review Henwood writes “There are some considerable tensions between the pursuit of national consistency, portability of entitlement and localism. How these will be resolved in practice is unclear.[64]” Meanwhile there is a weight of experience to indicate that Local Authorities will not be able to successfully assume the functions of the ILF and deliver an equivalent level of service to support disabled people in the community. ILF Trustees and senior management have commented that “Despite attempts through the personalisation agenda for adult social care to support life in the community, with its primary focus on safeguarding and protecting ‘vulnerable people’ from being without basic levels of support, ASC supplied by Local Authorities has, in the experience of the most severely disabled people, been unable to effectively tackle their exclusion from society”[65]. There are many unanswered questions concerning government proposals for the ILF, for example how can there be no loss of service for current users given the higher overheads costs that Local Authorities will require from the total ILF budget in order to administer it, also how assuming the functions of the ILF can be satisfactorily achieved when social workers are unable to manage their existing workloads.

In light of a lack of adequate consultation and review to date and the seriousness of what is at risk for disabled people and for civilised society it is not unreasonable to expect a dedicated consultation and review to examine the question of independent living support for disabled people and how this can be provided in line with the UN Convention on the Rights of Persons with Disabilities. This will not be achieved through the Care Bill which will be focused on the wider question of future funding for social care and will not cover the detail needed to ensure protection under the UNCRPD. This is something we therefore need to demand.

This is an updated version of a critique of the Henwood and Hudson report that appeared on the DPAC site in 2012. It is one which is now even more relevant with the additional cuts to local authorities, the failings and problems of the Care Bill processes and the cumulative attacks on disabled peoples’ right to live independently.

Not only should the long-term future of the ILF now be secured, but it should be re-opened to new applicants –anything else represents a retrogressive step in the promotion of independent living and a breach of article 19 of the United Nations Convention on the Rights of Persons with Disabilities. 

 

 

Nov 082013
 

Statement by Anne Pridmore, Gabriel Pepper and Stuart Bracking

As three of the Independent Living Fund users who have challenged the legality of the government’s decision to close the Fund, we welcome the Appeal Court’s unanimous ruling that this decision should be quashed.

Given the Government has decided not to appeal to the Supreme Court, the new Disabled People’s Minister Mike Penning will now have to reconsider the Government’s approach to the future of the Independent Living Fund and its users.

Rather than being the ‘privileged group’ referred to in the High Court judgement, the Appeal Court has acknowledged the potentially very grave impact the closure of the Fund would have on its users, putting seriously in peril the ability of a large number of people to live independent lives in their own homes, and pursue activities such as employment and education.

They concluded that when Disabled People’s Minister Esther McVey made her decision in 2012 to finally close the Fund by April 2015, she did not properly consider the need to advance our equality of opportunity, minimise the disadvantage we face, encourage independent living, and promote our participation in public life and other social activities.

For a generation, the Independent Living Fund has provided funding to support disabled people with complex conditions who need personal assistance to live in the community.

Twenty years ago, Disabled People’s Minister Nicholas Scott who founded the Fund in 1988 explained its importance to the House of Commons (25/2/1993): “It has helped those severely disabled people who did not want to go into residential care but who could not live in the community without a considerable degree of domiciliary support to maintain their independence. That is something that we can all applaud and welcome.” This is as true today as it was then.

In the same speech, Nicholas Scott also acknowledged there were limits to the financial support local authority social services could provide some disabled people: “If it is necessary for extra help to be provided….it will be open to the social worker who assesses the needs of disabled people to say, ‘We can provide services up to this level but we believe that a further level of care is necessary,’ and then to turn to the Independent Living Fund.”

The Independent Living Fund has provided a platform for social opportunities to be pursued by severely disabled people in large numbers for the first time in history.

The careers, family life, friendships, social activities and roles people have built for themselves could be undermined and in many cases dismantled if the Fund closes.

Although the Appeal Court ruled the consultation which preceded Esther McVey’s closure decision was lawful, we believe there is now an opportunity to reflect on our society’s responsibilities towards those who rely on the welfare state to keep them safe, healthy and free of distress.

Last year, 2000 individuals and organisations responded to this consultation, but the Court of Appeal held the real substance of the consultation responses were not conveyed to Disabled People’s Minister Esther McVey. An opportunity for an open, democratic debate was lost.

By responding to the World Health Organisation’s recommendation in the World Report on Disability that countries should provide services in the community and not in residential institutions or segregated settings and plan how to achieve this, the human and civil rights of disabled people of all ages could be respected, not just those of Independent Living Fund users

Until a decision is taken to save the Independent Living Fund and open it to new applicants with adequate funding to meet people’s individually assessed needs, the fear many disabled people have expressed about their future will not disappear.

This fear stems from an understanding of the impact limited support in the community will have on people’s life chances, or for some of us the low standards and rigid approaches to personal care found in residential and nursing homes which place people at risk of skin conditions, sores and sepsis.

Many Independent Living Fund users are also acutely aware that, as long-term employers of personal assistants, if they are forced into residential care their knowledge of the law and care standards will bring them into collision with poor management and abusive cultures where they exist.

There is also a significant risk for people with learning difficulties and/or autism of physical and emotional abuse in segregated settings where restraint and drugs are used to control behaviour that is defined as ‘challenging’ rather than being approached with patience, compassion and kindness.

The fear of residential care that exists among Independent Living Fund users with ‘round-the-clock’ needs also exists among large layers of the general public.

When reconsidering the Government’s approach to the future of the Independent Living Fund, the new Disabled People’s Minister Mike Penning could give the Fund a long-term future under the democratic control of its users, but also commit the Government to respect existing rights to an individual assessment of need.

His Government could give disabled people of all ages the right to live in the community throughout their lives with the personal assistance and professional services they need, rather than the artificial and segregated environments found in residential care.

We urge Mike Penning to grasp this opportunity and remove the uncertainty many thousands of severely disabled people and their families have experienced for several years.

We would like to express our sincerest thanks to: our fellow claimants Paris L’amour and John Aspinall and his parents Evonne and Paul Taylforth; the tireless work of solicitors Louise Whitfield of Deighton Pierce Glynn, Kate Whittaker and Diane Astin of Scott-Moncrieff and Associates, and our barrister Mr David Wolfe QC; the supportive intervention of the Equality and Human Rights Commission; and Independent Living Fund user Kevin Caulfield’s networking and guidance during the case.

We also acknowledge those Independent Living Fund users who have highlighted the impact closure would have on their lives, particularly Penny Pepper, Sophie Partridge and Mary Laver, which is not easy given the privacy most Independent Living Fund users and their families strive for.

We would also like to thank: Disabled People Against Cuts and Inclusion London for the campaign coordinated by Linda Burnip, Debbie Jolly, Tracey Lazard and Ellen Clifford; other users of the Fund and disabled activists who have attended protests and vigils and supported the campaign; the two thousand organisations and largely anonymous individuals who responded to the Independent Living Fund consultation a year ago; the support of the PCS union and the workers at the Independent Living Fund; our personal assistants; the work of campaigning journalist Kate Belgrave; and the consistent reporting of this issue by John Pring at the Disability News Service.

The future is ours to shape, but only if the personal assistance we need is present.

Mar 012013
 

In the count-down to the ILF court case on 13th March we will be publishing on a daily basis individual stories from disabled people affected by the closure of this essential source of independent living support.

This follows the powerful testimonies recorded by journalist Kate Belgrave and published by the Guardian:

http://www.guardian.co.uk/commentisfree/2013/feb/27/closing-independent-living-fund-disabled-care

Please circulate the links to the stories and use the tools in the campaigns pack to promote the Independent Living Fund campaign as widely as possible.

Our first story is from Mary Laver.

Olympic Torch Relay 041My love affair with the Independent Living Fund (ILF) started over 25 years ago, – I was just 40 and I am now 65, – when it came into my life, a life that I was existing not living.

Within 12 months of becoming crippled with Rheumatoid Arthritis at the age of 40 I was unable to leave my bed and this remained the case for the next 2 years.

I found myself in a position where I could not bear weight on my legs or feet, and my arms very quickly bent making it impossible to get out of my bed and into my powered wheelchair.  My care from social services was very basic at 2 hours per day. All but 2 of my friends deserted me.  I watched the seasons change by the reflection in a picture I had on the wall opposite my bed, which by this time, was now in my lounge.

Life was very grim until my social worker told me about the ILF; my love affair was to begin.

Being introduced to the ILF was not easy, my social worker had to fill in a long and complicated form and then we just had to wait for the verdict, yes or no to me getting the ILF, which was a long time coming. Meanwhile I decided to sell my house and buy a bungalow, which I did from my bed, and by the time the ILF was confirmed, the sale had gone through and I was on the move to my new home and my new life with my ILF.

I will not bore you with all the life changes over the past 25 years thanks to the ILF, but I will jump straight to 15th June 2012 at 5.03 pm Newbridge Street, Newcastle and a crowed eagerly awaiting the Olympic Torch to approach because that was the date, time and place that I was to have the greatest honor of my whole life, I was to carry the Olympic Torch in recognition of my charity work.  The list is long and you can Google me to find out more, but highlights are I drove my power chair from Lands End to John O’Groats making it into the Guinness Book of Records, which I did for the Royal British Legion, I have spent for the past 22 years, two weeks each year selling poppies, I have been pushed in my manual chair to raise monies for various charities in 16 Great North Runs. The list goes on and none of this would have happened without ILF.

My life does not all revolve around good works. My ILF also enables me to go out for long walks with my two much loved Jack Russell’s, Jack and Molly. My ILF enables me to visit places of interest, to have the freedom to do what I want, when I want, with whom I want.  I also use the ILF time for my carer to take me to my hospital and doctor’s appointments.

In all to sum up I would say I lead a life full of challenges and wonderful experiences mixed up with the odd boring moments.

But if I am divorced from my ILF I will be living a life of hell in my beautiful bungalow. My beloved dogs will have to find a new home. My social life will disappear.

How do I know this?

I know because I have seen what my care package would look like without the ILF contribution. Per day, I would receive support for a carer to sleepover, then 1 hour support for lunch, and 1 hour for tea. Per week would be added 7 hours for social activities, 90 minutes for shopping, 45 minutes for housework and 20 minutes ironing, plus 2 support slots of 15 minutes each for showering.

With nothing but a Local Authority care package I  would have a future of nothing more than sitting in my wheelchair from quarter to eight in the morning until half past ten at night with only two breaks, at lunch time and at tea time.  Without support to go to the toilet between visits from a care assistant I would be wet, so when the care assistant did come for the hour lunch time and tea time would need to be taken to clean me. I would also get a sandwich, a hot drink and be toileted. At tea time instead of a sandwich I would get a warmed up meal, which would have to be a microwave meal because no time would be allowed in my support package for cooking.

By the time the night staff came on at ten, I would be wet again and need to be washed and changed as well as been given a hot drink and put to bed at half past ten.

Being left wet for so many hours every day would lead to open pressure sores which would need to be treated by a nurse on a regular basis.

My day would be nothing more than me sitting in a wet pad, just being fed and watered, no Jack and Molly to keep me company, and above all no freedom to do anything I wish. My home will be my prison.

Oh except for my 7 hours of social care per week. Well with that I could use it to have one day out of the house per week or I could add 1 hour per day to my lunch or tea time call to make it less rushed.

Being very dramatic, there is a pond at the bottom of my garden and if I were to finally mentally snap, unable to take any more of this appalling care, it would only take a few minutes and all my problems, and that of the government, will be sorted… Or I could get someone to leave my gate open- I cannot do that myself- and a short metro ride would see me on a short pier where I could take a long walk…

The other alternative would be a care home.  Would the people who are taking my ILF away care to live in a care home? The pond seems more inviting.

So there you have it, my love affair with the ILF.  I will fight with every breath in my body to keep this affair going on.

 

 

 

Feb 222013
 

Inclusion London logoDPAC Logo 3 amendment 1 (Small)

Defend Independent Living: Save the Independent Living Fund!

We are opposed to the closure of the Independent Living Fund – a national fund that enables disabled people with the highest support needs to live independently in the community

Without the ILF disabled people with the highest support needs will lose essential support – local authorities cannot provide disabled people with the same level or type of support as the ILF and some people who get support from the Independent Living Fund now are not eligible for support from local authorities at all

Disabled people with high support needs are most at risk of losing their independence and those risks are greater now than at any time since the ILF started due to the disproportionate impact of different austerity measures on disabled people

Disabled people will be forced into residential care against their wishes, losing choice and control over their lives

Closure of the Fund breaches the human rights of disabled people as enshrined in the United Nations Convention for the Rights of People with Disabilities:

–         Article 19 – right to independent living

–         Article 28 – the right to an adequate standard of living and protection

Closure of the ILF will cost jobs:

–         Thousands of Personal Assistants employed through the ILF will lose their jobs

–         Disabled people will not have the support they need to be part of the community and to take up training, education and employment

–         Staff employed by the ILF will lose their jobs

The ILF is an effective and efficient way of providing support to disabled people with complex and high support needs:

  • ILF has higher satisfaction rates amongst disabled service users than LA services
  • Just 2% of funding goes on overheads (running the ILF) this is in stark contrast to the 16% of social care funding that goes on running LA social services departments.
  • ILF has the skills, knowledge and expertise to genuinely support disabled people with complex and high support needs, unlike LA’s.

We are calling for investment and expansion of the ILF that will provide:

–         State protection for the rights of disabled people with complex and high support needs to be supported to live independent lives

–         Expert independent living support based on the genuine independence, proper participation in society, and fulfillment of aspirations of disabled people.

–         A national model of support that does not vary depending on where you live

–         Support that is free at the point of need

 

Kevin Caulfield, Independent Living Fund, January 2013

Write to your MP

Dear_______________________ MP,

I am writing to urge you to defend disabled people’s right to independent
living which is under threat from the closure of the Independent Living Fund
(ILF), a source of essential support enabling disabled people with the highest
support needs to live in the community.

The closure of the ILF will mean for me….

On 18th December 2012 the government announced its decision to
permanently close the ILF following its closure to new applicants since
December 2010. The announcement followed a consultation that was flawed
and which ignored the overwhelming opposition to the closure from disabled
people and disabled people’s organisations as well as other organisations
and Local Authorities.

Government plans to merge the ILF with mainstream care and support will
result in a greatly reduced quality of life for disabled people and for some
will mean being forced into residential care against their wishes. This will
prevent disabled people from full inclusion and participation in the community,
as anticipated by Article 19 of the Convention on the Rights of Persons with
Disabilities.

The Government’s decision not to put in place any ring-fencing for the
support for current ILF recipients when responsibilities are transferred to
local authorities and devolved administrations will inevitably lead to a loss of
support as many local authorities have stated in their consultation responses.

The ILF is needed to protect adults in the UK who are most at risk of losing
their independence. Those risks are greater now than at any time since the
ILF started, and there is clear evidence that without that protection being
continued on a national basis disabled people with high support needs will
lose their ability to work, to live in the community rather than in institutions,
and to be part of society or even carry out family roles. With the ILF already
shut to new applicants it is clear this is the consequence of closure of the
Fund.

The closure is a false economy, making relatively small savings through
reducing support while at the same time making people dependent and
economically helpless.

The ILF has proved effective in meeting independent living needs at a
national level and at a time when disabled people are being affected
disproportionately by many different austerity measures, the protection
provided by the ILF needs of this group nationally needs to be strengthened

not removed.

I ask you to sign Early Day Motion 651 and to call on the Government to
review this regressive step and to look instead at ways of expanding the
Independent Living Fund to provide needs-based support to all disabled
people in the UK who require it.
In order to protect disabled people’s right to live with choice and control over
their lives and with dignity we need the Independent Living Fund.

Yours sincerely,

 

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template_letter_to_MP__Final_+1 Word Doc

 

 

Feb 012013
 

Many thanks to Kate Belgrave for letting us repost her blog and these great videos! Read also DPAC’s  draft position about the closure of the ILF.

 

This is the first of a collection of videos featuring people who will be directly affected by the government’s atrocious decision to close the Independent Living Fund (the ILF).

The ILF was set up in 1988 as a standalone fund which people with severe disabilities could apply to for extra money to pay for added care and support. That additional funding made it possible for people to live independently in their homes, rather than in residential care. For some people, the ILF paid for entire care packages. For others, ILF money was used to top up council funding for care. Most of the people who appear in these videos require round-the-clock care which – unsurprisingly – comes with a price tag.

In 2010, the Independent Living Fund was closed to new applicants.

Then in 2012, the coalition government announced that it would “consult” on the future of the fund for the ILF’s 19,000 existing users. The upshot of this was, towards the end of last year, an extremely unpopular decision to close the fund and devolve it to local authorities.

“In terms of independent living, this is the single most regressive action that the Condems could have taken,” DPAC’s Linda Burnip emailed to say. Indeed.

The money will not be ringfenced. It will be left to already cash-strapped councils to fund care for people with the most complex – and expensive – needs. That makes the whole prospect a complete shambles. Councils can’t meet demand as it is. Many are tightening eligibility criteria for care and have been taken to court for trying to restrict services, or for capping the amounts that they spend on claimants. Last year, as an example, Worcesterchire county council came up with a so-called maximum expenditure policy – meaning that if paying for someone to live at home with carers cost more than residential care, the individual would have to make up the difference themselves, or go into residential care – the sort of idea which would, as Sophie Partridge says in the video below, take everyone back to a time when people were hidden away in homes and made to sit around in incontinence pads.

So much for the advance of civilisation.

Penny Pepper

In this video, Penny Pepper – an Islington journalist and writer who has been receiving ILF payments for about 15 years – gives her views on the planned devolution.

The video starts with a few comments from Pepper about a letter (she’s holding it in the video) on the ILF closure which she received from her local MP Emily Thornberry – a letter that she says “doesn’t have any balls.”

Pepper requires round-the-clock care support. Islington council funds just over half of that. The ILF pays for the rest.

She believes that an independent funding structure like the ILF – run by people with disabilities themselves – is crucial to ensuring funding for people with complex needs.

She also says that she has found the political response to the government’s devolution proposal discouraging, to say the least. You’ll see in the video that she’s particularly disappointed with the response from Emily Thornberry, her local MP (I’ve asked Thornberry for her views on her own representation of people on this issue and had nothing back. Will keep you posted on developments if there are any).

Sophie Partridge

 

In this video, freelance creative practitioner Sophie Partridge, who is also a long-term ILF recipient and who also lives in Islington, voices similar concerns about a lack of political representation. She thinks that people with disabilities tend to serve as pawns in funding wars.

Any loss of care funding and hours could see her forced into residential care – an option that she says she will not contemplate. She says that councils should have fought harder to keep the ILF intact.

The lack of information that councils appear to have – or, at least, are prepared to release – about upcoming ILF responsibilities is purely amazing. Islington council (which part-funds care packages for Sophie Partridge and Penny Pepper) told me that it couldn’t predict whether or not it could match ILF funding, because the council “did not yet know the total amount to be devolved to local authorities.” Neither did the council know if it would need to fund extra staff, saying: “we do not yet know whether additional resources will be provided as part of the transition.” The council merely said, fluffily, that it would “always seek to meet people’s eligible needs in an appropriate way within available council resources.”

“Within available council resources.” Not a phrase to inspire confidence in this era.

Neither is this sentence [from the DWP]. “All disabled people, including those transferring from the ILF, will continue to be protected by a local authority safety net that guarantees disabled people get the support they need,” runs the fantasy that the DWP has posing as a ILF press release. A couple of weeks ago, I had an utterly painful phone conversation with a DWP press officer who insisted (and insisted) that the department’s ILF devolution plans must not be reported as a “cut.” I can see from your website that you write about cuts and this is not a cut! the press officer said several times. Loudly. It’s not a cut!

My two cents as I wrote in this short piece in the Guardian: if you believe that, you’ll believe anything. ILF recipients certainly don’t: a group of claimants has started court proceedings to challenge last year’s “consultation” on the closure. It’s the wider context that is the issue here. Council budgets and services are being obliterated. As things stand, an increasing number of councils now only fund people whose needs are assessed as substantial or critical in fair access to care bands. Being placed in the substantial or critical bands is no guarantee that your needs will be met, either. I’ve interviewed people who already struggle to pay for the care they need: this Lancashire woman, for example, who had been placed in the substantial band, told me that she had to stay in bed on weekends, because her care hours didn’t stretch to Saturdays and Sundays. This Cheshire woman, who was also in the substantial needs band, had run out of care hours on the day that I visited. I found her alone in her home lying next to a sick bucket. Who honestly thinks that the future holds local authority safety nets?

The early day motion which calls for MPs to fight the ILF closure is here.

 

Sep 212012
 
Saturday 29 September 2012
 
12pm – 4pm
 
The Pandon Room
Newcastle Civic Centre
NE1 8QH
 
An independent consultation event for disabled people living in the north east who use the Independent Living Fund and their families to help them respond to the government’s plans to close the Fund.
 
Please return the booking form to Gateshead Access Panel or email your name, address and a contact number to dpacnortheast@hotmail.com by 3pm on Thursday 27 September. For more info text DPAC on 0780 449 8228 or phone Ian or Christine on 0191 443 0058.
 
Sep 092012
 

 

For printing purposes you can download –

Why the closure of the Independent Living Fund affects everyone in the UK (Word doc)
Why the closure of the Independent Living Fund affects everyone in the UK (pdf)

Jan 122012
 

Independent Living Fund Trustees Press Need for Source of Social Care Support Beyond Local Authorites

In their response to “Caring for Our Future”, the government’s social care White paper consultation, ILF Trustees stressed the need for a source of specialised support from a ring-fenced budget. Whilst acknowledging the need to further develop the current system and a new model of support, the response warned of poorer outcomes for disabled people without the influence of a national element to independent living support.

The response highlights that “Despite attempts through the personalisation agenda for adult social care to support life in the community, with its primary focus on safeguarding and protecting ‘vulnerable people’ from being without basic levels of support, ASC supplied by Local Authorities has, in the experience of the most severely disabled people, been unable to effectively tackle their exclusion from society. “ In contrast to this, service users of the ILF have reported better outcomes and the value of having an assessor who has local knowledge but is independent of the local authority.

The Trustees state in the response that their “firm view is that [a new model of support] needs to look beyond the mainstream funding of social care from local authorities”. The case is made for maintaining a national element to continue the ILF’s role in driving up standards from local authorities and pushing for consistency.

To read the response in full please go to: caring for our future

Jan 122012
 
Many thanks to Jenny Morris for allowing DPAC to reproduce her blog below as taken from:
 
In a discussion about my critique of disability policy, someone expressed surprise that I hadn’t written about the closure of the Independent Living Fund.  They were right that this is a serious omission from any analysis of the current attack on disabled people’s access to civil and human rights.  My only excuse is that every time I started to include the issue there was too much I wanted to say about the history and demise of the ILF.
 
The setting up of the Independent Living Fund in 1988 was an example of ‘progress by default’ in the heyday of the Thatcher government’s attack on the welfare state. This attack included abolishing something called the Domestic Needs Allowance.  This (unpublicised and therefore underclaimed) benefit was paid to a small group of disabled people who qualified for an addition to their Supplementary Benefit because they needed help with ‘ordinary domestic tasks’ like cooking and cleaning. Its abolition was part and parcel of the then Tory government doing what this Coalition government is doing – attempting to cut the benefits bill while claiming to be introducing new systems which would enable ‘better targeting’.  Then, as now, it was the House of Lords which mounted significant resistance resulting in a number of changes to the legislation, including the announcement by the government that they would set up a Fund to help ‘people who are severely disabled’, who were on low incomes, in receipt of attendance allowance, and who had to pay for their ‘domestic care’.   
 
The government thought that only about 250 people would qualify; Disability Alliance thought it would be several thousands.  By 1992, over 22,000 people were receiving an ILF grant and the original £5million budget had reached £97 million.
 
As with Disability Living Allowance, the government found it had introduced a method of supporting disabled people’s additional costs which was popular because it increased autonomy and quality of life.  But, as with DLA, instead of welcoming the success of the policy, the government’s response to the larger numbers of people successfully claiming than expected, was to attempt to reduce the numbers of people qualifying. In 1992, the original ILF was closed overnight and while a new Fund was set up, eligibility was tightened up and disabled people had to already be in receipt of local authority funded services.
Yet still its popularity grew, as did the principle at the heart of the ILF – giving people the money to enable them to purchase their own support. 
 
In 1993 I published research[i], comparing the experiences of people who were dependent on traditional services for the help they needed with those who received grants from the Independent Living Fund or cash payments from their local authority (at that point these direct payments were technically illegal until the 1996 Community Care (Direct Payments) Act was passed).  The contrast was striking in terms of people’s access to privacy and a family life, and to the opportunities they had for participating in society: ILF grants gave people control over the support they needed and meant their human and civil rights were protected and promoted.
 
These findings were echoed by all the research carried out during the 1990s and in more recent years – ILF grants have given people choice and control and have, as the most recent review found, been particularly good at reaching people with significant learning difficulties, who made up almost a third of those receiving grants in 2006
 
So why close it down?  The main incentive was of course the Department for Work and Pensions’ need to offer up savings to the Treasury in the context of cutting the deficit.  In looking for reasons DWP argued that “an independent discretionary trust delivering social care is financiallyunsustainable”.
 
The ILF was not a perfect system: amongst other things, it discriminated against older people (by imposing an upper age limit of 65 at the point of application) and against those with the highest support needs (by imposing a weekly limit on how much support can be funded). The independent review carried out in 2006 recommended – in the longer term – merging it into a new system of delivering social care based on the individual budgets which were being piloted at that time.
 
And the ILF is undoubtedly an anomaly.  In its initial phase it was entirely part of the national social security system but funded needs which were otherwise met by locally delivered social care systems. Since 1992, it has been more of a hybrid in that, while it is funded within the national social security system, the gateway to an ILF grant is through the locally delivered social care system.
 
When I was working with the Prime Minister’s Strategy Unit, on what became Improvingthe Life Chances of Disabled People,   the logic of our analysis of independent living and the policies needed to deliver it led us to discuss whether there should be a national delivery mechanism – akin to the Independent Living Fund.  We drew back from this, partly because of political pragmatism but also on the grounds that it would undermine local democracy. 
 
I’ve never been entirely happy with this latter reason. It is only a historical accident – not because of considered policy design – that disabled people’s additional costs are currently addressed by two entirely different systems: Disability Living Allowance, non-means-tested and delivered through a national social security system; and community care (whether as services or direct payments) means-tested and delivered through a local system subject to local and professional discretion.
 
The Dilnot Commission, in response to the years of evidence of a ‘postcode lottery’ in access to social care recommends a national system of assessment.  We already have one – it’s called the Independent Living Fund.
 
For years, there have been attempts to encourage local authorities to use direct payments (and now personal budgets) to enable disabled people to have choice and control over the support they need to go about their daily lives.  Yet there remains a postcode lottery of not only the level of support available but the extent to which an individual can have control over the resources available.
 
As Colin Barnes has written, “One way out of this mess would be to take the distribution of direct payments out of the hands of local authorities and centralise it. This could be achieved by setting up a new national body similar to the ILF and accountable to organisations controlled and run by disabled people such as the National Centre for Independent Living (NCIL)”. [ii]
 
In the next few months the government will be publishing a consultation on the Independent Living Fund, and its long awaited White Paper in response to both the Dilnot Commission and the Law Commission’s report on community care legislation. The debate so far has mainly been related to how we can fund adult social care but there is an equally important debate to be had about the principles of delivery.  I would suggest, as a starting point, these should include:
 
– nationally consistent entitlements: ‘postcode lotteries’ are unjust and create disincentives to move in pursuit of employment opportunities or because of family commitments;
 
– universality, i.e. no means-test: disabled people face additional costs and a modern welfare state should fund these costs, out of general taxation, to create a level playing field;
 
– choice and control: self-determination is a basic human right which disabled people cannot experience unless they have choice and control over the support needed to go about their daily lives.
 
The Association of Directors of Adult Social Services told the Joint Committee on Human Rights Inquiry intoIndependent Living that, in the current climate, they are unlikely to provide replacement funding for all those who would previously have qualified for ILF grants.  This is the reality facing disabled people and which must be addressed by the government in its plans for the future of adult social care.
 
In the meantime, I would urge people to sign Disabled People Against the Cuts’ (DPAC) letter which urges the government to carry out a separate consultation on the ILF (rather than just including it in that on future funding of adult social care), and to continue the separate funding that the ILF provides. You can get a copy of the letter and sign up by visiting the DPAC website or emailing mail@dpac.uk.net.
 


[i] Morris, J. 1993. Independent Lives? Community Care and Disabled People, Macmillan.
 
[ii]  Barnes, C. 2007.’Direct payments and their future: an ethical concern?’ in Ethics and Social Welfare, 1(3), pp. 349-354.
 
Jan 072012
 

The cost to the state of scrapping the UK Independent Living Fund (ILF) will be over 154 million pounds per year[i] in institutional costs based on current levels of 21,000 people that receive ILF. If we accept that a further 41,000 people would have been entitled to receive ILF since it closed its doors to new applicants in June 2010 the figure rises to a minimum of over 462 million.

The Independent Living Fund (ILF) allows ‘severely disabled’ people to stay in their own homes and out of residential institutions through the employment of personal assistants. The likely closure of ILF in 2015 for existing applicants will cause more misery to disabled people and cost the state billions with many disabled people being forced into residential institutions. The cost to the state of scrapping ILF is likely to top over 462 million pounds per year in institutional costs. These figures do not include the loss to the exchequer of tax revenues disabled people generate by employing personal assistants, nor extra health service costs that will be incurred by the closure of ILF.

While the Dilnot report suggested that individuals would pay a percentage of their own institutional costs in the future, the majority of disabled people will simply be unable to do that. Therefore the cost goes to the state or more specifically the tax payer. The stated purpose of the closure of ILF is claimed to be cost savings, yet figures based on potential predictions show the opposite will be true.

The government’s own social care health committee say: ‘Inevitably the cost of care is not static, 2011 figures had increased by 5.1% and 3.3% respectively from 2010. Many care homes can cost more than £50,000 per year’. However, given the loss of ILF and restrictions on many local authority eligibility criteria to ‘critical’ to be eligible for social services – more and more disabled people will find their living, economic and social conditions deteriorating with additional adverse effects on their health.

A reliable 2010 residential cost estimate is given in the Scottish governments’ quoted estimate of £72,000 per year based on ‘Service User A’ who is ‘a 59 year old male who has multiple sclerosis’.  The cut backs on ILF, Disability Living Allowance , incapacity benefit changeovers and cuts in local authority funds of up to 30% make it more likely that this particular ‘service user’ and others like him will be heading for the more expensive option of the residential home.

Service user A is 59 and would be in residential ‘care’ for a number of years, based on the average life-span arrived at by the governments’ own Office of National Statistics. The cost to the state would amount to over 1 million over the lifetime of ‘service user A’ at 2010 prices.

The government appear intent on contravening article 19 of the UN Convention on the Rights of Disabled Persons to live independently in the community with the right to employ personal assistants, as well as the European Convention on Human Rights and the diluted Equality Act 2010. The stated purpose of the closure of ILF is claimed to be cost savings, yet the figures show the opposite is true.

£37,888 per annum per person is the difference between receiving current average payout of ILF at 2011 and the cost of residential care at 2010 cost levels, excluding future inflation and excluding revenue from tax receipts of personal assistants employed by disabled people using ILF.

154 million two hundred thousand per year costs are based on the current number of 21,000 users of ILF@ £74,000 per year in institutional costs per person.  ILF has been closed to new applicants since June 2010. The overall figure of those in the qualifying bracket for ILF is likely to be far higher than the figure of 21,000 people stated by the coalition.

The Closure of the Independent Living Fund has been eclipsed by arguments on the change from Disability Living Allowance to Personal Independence Payments, Atos and the Work Capability Assessment and Welfare reform as the priorities. That’s a lot for UK disability activists to fight, but it’s time to bring back the closure of ILF and its impacts.

Sign Disabled People against Cuts (DPAC’s) letter on ILF here

Originally posted on http://www.digitalvoice.eu/

Debbie Jolly is on twitter: @redjolly1



[i] Figure based on a cost of 74,000 per year for institutional costs

 

 

 

 

 

Jan 032012
 

DPAC logoTo add your signature please email mail@dpac.uk.net 

07.01.12

 

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 little since. Maria Miller issued a speedy statement (5th December) saying that ILF will be discussed in Spring 2012 in context of the reform of the Care and Support system- Yet, ILF is too important to be discussed as a side issue.

 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. In addition, ILF users have not received any increase in funds since 2010 meaning they cannot increase pay to P.A.s

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 theUK, 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. TheUK 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 theUK’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 to be.

 We wish to have input into the design of the consultation process and assurances that the 21,000 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.

 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 busyEast 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 impairment.   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?

 Signatures at 07.01.12

 ILF Users 39

Alan Robson

Alison Barrett – ILF user, Peer support Coordinator Wiltshire Centre for Independent Living

Anne Novis MBE, ILF user, Trustee UKDPC

Anne Pridmore – ILF user and director ‘Being the Boss’

Anne Whitehurst – ILF user

Andrew Hardy, ILF user

Brian Hilton, ILf user

Cath Gibson, ILF user

Elizabeth Baily – ILF user

Francesca Digiorgio – ILF User

Gabrielle Pepper – ILF user

Glynis Dawes – ILF user

Ian Burnip- ILF user

Henry Langen – ILF user

Jenny Hurst – ILF user

John Evans, OBE-ILF user

Katherine Arienello – ILF user,Comedian

Kevin Caulfield – ILF user

Laurence Clark –  ILF user, Comedian and Writer

Lianne Bayliss – ILF user

Lisa Morrison- ILF user

Liz Carr – ILF user, Comedian and broadcaster

Lucy Trengrove – ILF user

Mark Williams – ILF user and DEF Co Chair

Natalie Meadows – ILF user

Nicki Myers – ILF user

Noor Homayoun – ILF user

Peergawsan Lotun – ILF User

P.J. Banyard MA (cantab) –  ex CEO international Spinal Research trust, ILF user

Penny Pepper – ILF user

Roxanne Homayoun- ILF user

Ruth Bashall – ILF user

Sarah Morrison – ILF user

Sean Mc Govern – ILF user

Shabaaz Mohammed – ILF user

Sue Elsegood – ILF user

Terry Egan – ILF user

Terry Rothwell – ILF user

Trevor Palmer – ILF user and small business owner

 Parents of ILF users – 13

Barbara Horsewood – Mother of ILF user

Kay Raisey

Laura Scott – Mother of two ILF users

Linda Burnip- disabled mother of ILF user

Margaret Jones – Mother of ILF user

Pam Robinson – mother of ILF user

Paul Taylforth – parent of ILF user

Rebecca Trengrove

Rosemary Homayoun

Dr Saddi Chillingworth -Parent of ILF user

Tracey Hattley

Tricia Tsatsoulis

Vincent Lloyd Jones – Father of ILF user

 Disability Organisations – 55

– Access Dorset – CE, Jonathan Waddington-Jones

– AgeUK- Mary Cox

-Alliancefor Inclusive Education – CEO Tara Flood

– Atos Victims Group – Paul Smith

– After Atos ‘Counting the Disabled Back In’ – K. James/J.Knight

– Being the Boss – Sheila Blair

– Black Triangle campaign group –  John McCardale

– BreakthroughUK– Elaine Astley, Policy and Research assistant

– Broken ofBritain- Kaliya Franklin

– Carer Watch – Rosemary O’Neill

– Carmarthenshire Disabled Access group – Chairman F.R. Allen MBE

-ChesterAdult Phab Social Club – Chair Person Lynda Hesketh

– Choices and Rights Coallition – Chair Mark Baggley

-CornerstoneChurchproject – Ann Whitmore

– Different Strokes – Debbie Wilson, Chief Executive

– DisabilityCornwalland Isles of Scilly – Theo Blackmore

– Disability Equality ForumBristol

– Disability Equality LTD –  CEO, Melanie Close

– Disability Hate Crime Network – Coordinator, Stephen Brookes MBE

– Disabilty Wales – Chief Executive, Rhian Davies

– DPAC – Disabled Peoples against the Cuts

– DPAC Islington – Julia Cameron

– DPAC Lambeth, Roger Lewis

– DPAC,Brighton, Jill Goble

– DPAC,Chester-  Lynda Hesketh

– GAD (GreenwichAssociation of Disabled People) – CEO, Joanne Munn

– GreaterManchesterCoalition of Disabled People –  GMCDP, Brian Hilton

– Green Party Trade Union Group – Alan Wheatley Disability Spokesperson

– Hammersmith and Fulham Coalition against Community Care Cuts – HAFCAC

– InclusionLondon- Chair, Kirsten Hearn, CEO Tracey Lizard

– InclusionScotland- Manager, Bill Scott

– Jubilee Sailing Club – CE  Alex Lochrane

– Kensington Centre for Independent Living –  CEO, Theo Harris

-KingstonCarers Network – Director, Kate Dudley

– Limbcare – Gordon McFadden, Chief Officer of Policy, CEO and Chair, Ray Edwards MBE

– IpswichMencap – Chair,  Barbara Thorn
– Norfolk Coalition of Disabled People – CEO, Mark Harrison

– NorthEdinburghFights Back

– National Centre for Independent Living, NCIL –  CEO Sue Bott

– Ouch Too online disabled peoples organisation

– Public and Commercial ServicesUnion(PCS) at the ILF – Branch Secretary, Paul Martin

– Remploy Trade Union National Convener – Les Woodward

– Shaping Our Lives network – Chair, Professor Peter Beresford OBE,BrunelUniversity

– Sisters of Frida, cooperative of disabled women – MD, Maria G Zedda

– Social Work Action NetworkLondon– Dan Morton, Rich Moth Deputy National Convenor

– The Forgotten Heroes – Trustee, Charley Downey

-United KingdomDisabled Peoples Council- UKDPC – CEO, Jaspal Dhani

– VoiceUK– CEO Kathryn Stone OBE C. Dir FLoD

-WalesCampaign for Fair Society – Chair, Paul Swann

-WalesCouncil for the Blind – Director, Phil Stevens

– West Norfolk Disability Information service

– Wheels in Motion,Birmingham- Tracy Veck

– Where’s the Benefit

Wiltshire CIL – Director, Geraldine Bentley

-YorkIndependent Living Network – Lyn Jeffries  

 European/national Disability Organisations/professionals – 6

– European Network of Independent Living (ENIL) –  Exc.Dir.Jamie Boiling

– Expertise Centre Independent Living – Peter Lambreghts

– Independent Living Slovenia – Elena Pecaric

– Kapka Panayotova CIL – Sofia,BULGARIACEO

– YHD – Association for Theory for Theory and culture of Handicapped,Slovenia– Klaudija Poropat President

-Koblenz,Germany– Local Ombudsman, Christian Bayerlein

 Academics – 5

Colin Barnes, Professor of Disability Studies, University ofLeeds

Dr Charlotte Pearson

Jenny Slater, ManchesterMetropolitanUniversity

Professor Peter Beresford OBE,BrunelUniversity

Dr Alison Wilde

 Disabled People – 186

Adam Lotun

Ahmed Bagi

Alan Holdsworth

Alan Wheatley – Disability spokesperson, Green Party Trade Union Group

Alec Middleton

Alex Lochrane – Chief Exec Jubilee Sailing Trust

Alice Wedderburn

Alison Binns – Fundraiser, Different Strokes

Andrew Hubbard

Ann Whitmore -CornerstoneChurchproject

Anne Callanan

Anne Isaac

Anne McDonald

Annie Wiltcher   

13

Barbara Hulme

Barbara Thorn – Chair person Ipswich Mencap

Beverley Rawsthorn

Beverley Smith

Bill Cox

Bill Scott – Manger InclusionScotland

Brian Hilton

Brian Phillips

Bob Williams-Findlay – former Chair of British Council of Disabled People 

9

Caroline Mace

Catherine MacArthur

Charley Downey – Trustee, The Forgotten Heroes

Chris Walsh

Christian Bayerlain – ombudsman

Cindy Albright

Coover Mistry –  member of KCIL

Craig Lundie  

 9

D.H.Kelly

Danka Gordon

Dave Stamp

DavidBridge

David Churchley

David Gillon, Disability Rights Activist and Blogger

Debbie Wilson – CE, Different Strokes

Deborah Williams

Diana Harrison

Debbie Jolly – Co-Founder DPAC and Director Thaedis

Diane Harrison

Dora Kostiuk 

Donna Kelsey

13

Eileen Gambrell – Service Manager, Different Strokes

Elysabeth McCaig-Scot

Elane Heffeman

Eleanor Firman – Composer, teacher and Music Director

Eleanor Lisney – cofounder of DPAC

Ellen Clifford – Sisters of Frida

Elena Pecaric   -YHD Slovenia

Eric Day Equality and Disability LCIL  

7

F.R. Allen MBE

Fred Williams – excluded from ILF

Frieda Van de Poll – Artist

3

Gabriel Pepper

Gail Ward

Gaynor Jenkins

Geraldine Bentley – Director, Wiltshire CIL

George Lamb

GordonAmes

Gordon McFadden – CEO, Limbcare     

7

Helen Sims

Holly Meiszner               

2

Jamie Bolling-executive director ENIL

Jan Turner – excluded from ILF

Jane Heath

Jaspal Dhani – CEO UKDPC

Jean Goodrich

Jennifer Ames

Jenny Morris – author

Jerry Johnson – Finance Manager, Different Strokes

Jill Goble – DPAC,Brighton

Jo Lewis – Fundraising Administrator, Different Strokes

Joanne Hayes

Joanna Munn – CEO, GAD (GreenwichAssociation of Disabled People)

Jodie Mickleburgh – Office Manager, Different Strokes

John Hargrave

John Kelly

John James McCardale

John McGovern

John Newman

John W Smith

John Smith – GMCDP

Jonathan Hughes –

Jonathan Lee

Jonathan Toye

Jonathan Waddington-Jones

Judith Bond

Judith McNamara –DisabilityInclusionWorker PembrokeshireCountyCouncil

Julia Cameron – DPAC Islington

Julie kennedy

June Knight

29

Kay Trujillo

Kapka Panayotova-founder/director of CIL Sofia

Karen James

Karen Pointin

Kate Robinson

Kaliya Franklin – Broken ofBritain

Kenneth Hill

Kenny Bee

Kevin James

Kev Towner

Kirsten Hearn – Chair InclusionLondon

Klaudija Poropat-President of YHD Slovenia

13

Laurence Robb – MS Research, and standup4MS.blogspot.com- excluded from ILF

Les Woodward

Lianne Figg

Linda Burnip- co founder of DPAC

Lindsay Lotun

Lisa Egan – disabled daughter of ILF user

Liz Silver

LorraineAyres – Group Development Manager, Different Strokes

LydiaJ. Roe

Lyn Jeffries -YorkIndependent Living Network

Lyn Valentine

Lynda Hesketh– excluded from ILF, Chair Person, Chester Adult Phab Social Club

11

Magg Lauppen

Maria Zedda – Vice Chiar London 2012 disabilities Communities Engagement Group

Marion Lowther –South Walesdevelopment officer, Contact the Elderly

Mark Baggley – Chair, Choices and Rights Coalition

Mark Harrison –  CEO,NorfolkCoalition of Disabled People

Mark Newman

Mark Wilson

Mathew Wheatley

Martin Williams

Martine Miel – Sisters of Frida

Mary Fox

Maureen Vogels – member Black Triangle

Melanie Banton – Executive assistant, Council of Disabled people, Warwickshire andCoventry

Melanie Close – CEO Disability Equality Ltd

Michael Bricknell

Michelle Daley – Disability Equality Trainer

Moira McCall

Moira M Smith

18

Naomi Jacobs

Nirmala.G.Jivan

Neil Fergusan

3

Paul Martin –  PCS at ILF, Branch Secretary

Pat Onions disabled person and carer

Paul Smith – Atos Action group

Paul Swann – Policy Officer Disability Wales

Pauline Latchem

Penny Goring

Peter John Farrington

Peter Lambreghts – Expertise Centre Independent Living

Peter Lockheart

Phil Lockwood

Phil Stevens – Director Wales Council for the Blind

Phillipa Willitts

12

Rachel Huskisson

Ray Edwards MBE – Chair Limbcare

Rhian Davies – Chief executive, Disability Wales

Rhys Handley

Robin Bray- Hurran

Roger Lewis – DPAC Lambeth

Rosena McKeown

Rosemary O’Neil – Carer Watch

Roxanne Faulks – DP services manager, WECIL

Rudi Vogels – member Black Triangle

11

Sarah Coleman – Volunteer coordinator GAD CIL

Sarah Ismail

Sarah Simpson

Sasha Callaghan –  PastPresidentUniversityand CollegeUnion

Sedley Bryden

Sheila Blair

Sophie Partridge

Stacy Hoare

Stephen Brookes MBE – Coordinator DHCN

Stephen Hodgekins

Steve Burge

Steve Grinter – Education Secretary ITGLWFUKoffice

Sue Bott – CEO NCIL

Sue Fortune

Sue Marsh

Svetlana Kotava – Lawyer on Human Rights

15

Tanya Doolin

Tara Flood OBE- CEO, ALFIE

Theo Blackmore – DisabilityCornwalland Isles of Scilly

Theo Harris – CEO, Kensington Centre for Independent Living

Tina Coleman – mental health activist

Tracey Lizard – CEO Inclusion London

Tracey Veck – Wheels in Motion,Birmingham

7

Vicky Ayech

Victor Oliver

Vivienne Heuerman

3

Whalley Gordon

Willow Jacky – Carer and disabled person

Winston Thomas – Carmarthenshire Disabled Access group

3

Zoubeidah Lotun

1

 Family Carers/Personal Assistants – 33

Alicia Walker – PA

Anna Fitzpatrick – PA

Billy Ward – Parent carer

D. Gilligan – Carer

D.Ridley – Carer

Gemma Novis

Henry Bruce – Carer

J. Abdu – Carer

J. McCullough – Carer

J. Robson – Carer

J. Rymell – Carer

Jacqui Armston -PA

Jane Blake – PA

Jean Milne

John R Caley

Jonathan Novis

Kate Dudley – Kingston Carers network

Laura McKenna

Linda Dickenson

Marion Beazley – PA

Michelle Allen – PA

Mike Spinney

Nicole Bilsden – PA

S. O’Neill – Carer

Simone Meiszner

Steffanie Cook – PA

Steven Preace –Carers Circle

Terrine Johnson – PA

Trev Burnip

Veronica Birley

W. Coyle – Carer

Wendy Mortimer – PA

Vin West – unpaid Carer for ILF User and member of Wales Association for Citizen Directed Support

 Other supporters – 21

Amal Jama – OBAC- Supporting the Independence of People with disability.

André Keil

D. McGee

Dan Morton – SWAN

David Robertson Support Worker (Recovery Across Mental Health)

Gordon Eagling

Jo Walker

Jon Staley – Support Worker & Trainer

K. McGee

Kathryn Stone MBE – Director VoiceUK

Keithley Wilkinson – NHS Wales

Linda Lawty – Senior Advocate People FirstCumbria

Linzi Calvert

Lyn Whiteside BSc(hons) SRN

Natalya Dell

Rich Moth – Deputy National Convenor SWAN

Rosita Wilkins

S. Buttress

Shaaba Lotun

Tansy Feltis

Tehya Lotun

 Councillors/officials -2

– Alan Hunt – Access officer, Pembrokeshire County Council

– Cllr Roger Robinson- Camden Council;Chair- Camden Council’s Disability Scrutiny Panel &former CEO-Artsline

 Wales Assembly members -3

– Keith Davies – Assembly member

– Mike Hedges – Assembly Member forSwanseaEast

– Rebecca Evans – Assembly Member for Mid and WestWales

 MPs

Dave Anderson – Labour MP for Blaydon

Jim Sheridan – Labour MP forPaisleyand Refrewshire

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Dec 062011
 

To add your signature please email mail@dpac.uk.net or linda_burnip@yahoo.co.uk

07.01.12

 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 little since. Maria Miller issued a speedy statement (5th December) saying that ILF will be discussed in Spring 2012 in context of the reform of the Care and Support system- Yet, ILF is too important to be discussed as a side issue.

 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. In addition, ILF users have not received any increase in funds since 2010 meaning they cannot increase pay to P.A.s

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 theUK, 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. TheUK 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 theUK’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 to be.

 We wish to have input into the design of the consultation process and assurances that the 21,000 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.

 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 busyEast 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?

 Signatures at 07.01.12

 ILF Users 39

Alan Robson

Alison Barrett – ILF user, Peer support Coordinator Wiltshire Centre for Independent Living

Anne Novis MBE, ILF user, Trustee UKDPC

Anne Pridmore – ILF user and director ‘Being the Boss’

Anne Whitehurst – ILF user

Andrew Hardy, ILF user

Brian Hilton, ILf user

Cath Gibson, ILF user

Elizabeth Baily – ILF user

Francesca Digiorgio – ILF User

Gabrielle Pepper – ILF user

Glynis Dawes – ILF user

Ian Burnip- ILF user

Henry Langen – ILF user

Jenny Hurst – ILF user

John Evans, OBE-ILF user

Katherine Arienello – ILF user,Comedian

Kevin Caulfield – ILF user

Laurence Clark –  ILF user, Comedian and Writer

Lianne Bayliss – ILF user

Lisa Morrison- ILF user

Liz Carr – ILF user, Comedian and broadcaster

Lucy Trengrove – ILF user

Mark Williams – ILF user and DEF Co Chair

Natalie Meadows – ILF user

Nicki Myers – ILF user

Noor Homayoun – ILF user

Peergawsan Lotun – ILF User

P.J. Banyard MA (cantab) –  ex CEO international Spinal Research trust, ILF user

Penny Pepper – ILF user

Roxanne Homayoun- ILF user

Ruth Bashall – ILF user

Sarah Morrison – ILF user

Sean Mc Govern – ILF user

Shabaaz Mohammed – ILF user

Sue Elsegood – ILF user

Terry Egan – ILF user

Terry Rothwell – ILF user

Trevor Palmer – ILF user and small business owner

 Parents of ILF users – 13

Barbara Horsewood – Mother of ILF user

Kay Raisey

Laura Scott – Mother of two ILF users

Linda Burnip- disabled mother of ILF user

Margaret Jones – Mother of ILF user

Pam Robinson – mother of ILF user

Paul Taylforth – parent of ILF user

Rebecca Trengrove

Rosemary Homayoun

Dr Saddi Chillingworth -Parent of ILF user

Tracey Hattley

Tricia Tsatsoulis

Vincent Lloyd Jones – Father of ILF user

 Disability Organisations – 55

– Access Dorset – CE, Jonathan Waddington-Jones

– AgeUK- Mary Cox

-Alliancefor Inclusive Education – CEO Tara Flood

– Atos Victims Group – Paul Smith

– After Atos ‘Counting the Disabled Back In’ – K. James/J.Knight

– Being the Boss – Sheila Blair

– Black Triangle campaign group –  John McCardale

– BreakthroughUK– Elaine Astley, Policy and Research assistant

– Broken ofBritain- Kaliya Franklin

– Carer Watch – Rosemary O’Neill

– Carmarthenshire Disabled Access group – Chairman F.R. Allen MBE

-ChesterAdult Phab Social Club – Chair Person Lynda Hesketh

– Choices and Rights Coallition – Chair Mark Baggley

-CornerstoneChurchproject – Ann Whitmore

– Different Strokes – Debbie Wilson, Chief Executive

– DisabilityCornwalland Isles of Scilly – Theo Blackmore

– Disability Equality ForumBristol

– Disability Equality LTD –  CEO, Melanie Close

– Disability Hate Crime Network – Coordinator, Stephen Brookes MBE

– Disabilty Wales – Chief Executive, Rhian Davies

– DPAC – Disabled Peoples against the Cuts

– DPAC Islington – Julia Cameron

– DPAC Lambeth, Roger Lewis

– DPAC,Brighton, Jill Goble

– DPAC,Chester-  Lynda Hesketh

– GAD (GreenwichAssociation of Disabled People) – CEO, Joanne Munn

– GreaterManchesterCoalition of Disabled People –  GMCDP, Brian Hilton

– Green Party Trade Union Group – Alan Wheatley Disability Spokesperson

– Hammersmith and Fulham Coalition against Community Care Cuts – HAFCAC

– InclusionLondon- Chair, Kirsten Hearn, CEO Tracey Lizard

– InclusionScotland- Manager, Bill Scott

– Jubilee Sailing Club – CE  Alex Lochrane

– Kensington Centre for Independent Living –  CEO, Theo Harris

-KingstonCarers Network – Director, Kate Dudley

– Limbcare – Gordon McFadden, Chief Officer of Policy, CEO and Chair, Ray Edwards MBE

– IpswichMencap – Chair,  Barbara Thorn
– Norfolk Coalition of Disabled People – CEO, Mark Harrison

– NorthEdinburghFights Back

– National Centre for Independent Living, NCIL –  CEO Sue Bott

– Ouch Too online disabled peoples organisation

– Public and Commercial ServicesUnion(PCS) at the ILF – Branch Secretary, Paul Martin

– Remploy Trade Union National Convener – Les Woodward

– Shaping Our Lives network – Chair, Professor Peter Beresford OBE,BrunelUniversity

– Sisters of Frida, cooperative of disabled women – MD, Maria G Zedda

– Social Work Action NetworkLondon– Dan Morton, Rich Moth Deputy National Convenor

– The Forgotten Heroes – Trustee, Charley Downey

-United KingdomDisabled Peoples Council- UKDPC – CEO, Jaspal Dhani

– VoiceUK– CEO Kathryn Stone OBE C. Dir FLoD

-WalesCampaign for Fair Society – Chair, Paul Swann

-WalesCouncil for the Blind – Director, Phil Stevens

– West Norfolk Disability Information service

– Wheels in Motion,Birmingham- Tracy Veck

– Where’s the Benefit

Wiltshire CIL – Director, Geraldine Bentley

-YorkIndependent Living Network – Lyn Jeffries  

 European/national Disability Organisations/professionals – 6

– European Network of Independent Living (ENIL) –  Exc.Dir.Jamie Boiling

– Expertise Centre Independent Living – Peter Lambreghts

– Independent Living Slovenia – Elena Pecaric

– Kapka Panayotova CIL – Sofia,BULGARIACEO

– YHD – Association for Theory for Theory and culture of Handicapped,Slovenia– Klaudija Poropat President

-Koblenz,Germany– Local Ombudsman, Christian Bayerlein

 Academics – 5

Colin Barnes, Professor of Disability Studies, University ofLeeds

Dr Charlotte Pearson

Jenny Slater, ManchesterMetropolitanUniversity

Professor Peter Beresford OBE,BrunelUniversity

Dr Alison Wilde

 Disabled People – 186

Adam Lotun

Ahmed Bagi

Alan Holdsworth

Alan Wheatley – Disability spokesperson, Green Party Trade Union Group

Alec Middleton

Alex Lochrane – Chief Exec Jubilee Sailing Trust

Alice Wedderburn

Alison Binns – Fundraiser, Different Strokes

Andrew Hubbard

Ann Whitmore -CornerstoneChurchproject

Anne Callanan

Anne Isaac

Anne McDonald

Annie Wiltcher   

13

Barbara Hulme

Barbara Thorn – Chair person Ipswich Mencap

Beverley Rawsthorn

Beverley Smith

Bill Cox

Bill Scott – Manger InclusionScotland

Brian Hilton

Brian Phillips

Bob Williams-Findlay – former Chair of British Council of Disabled People 

9

Caroline Mace

Catherine MacArthur

Charley Downey – Trustee, The Forgotten Heroes

Chris Walsh

Christian Bayerlain – ombudsman

Cindy Albright

Coover Mistry –  member of KCIL

Craig Lundie  

 9

D.H.Kelly

Danka Gordon

Dave Stamp

DavidBridge

David Churchley

David Gillon, Disability Rights Activist and Blogger

Debbie Wilson – CE, Different Strokes

Deborah Williams

Diana Harrison

Debbie Jolly – Co-Founder DPAC and Director Thaedis

Diane Harrison

Dora Kostiuk 

Donna Kelsey

13

Eileen Gambrell – Service Manager, Different Strokes

Elysabeth McCaig-Scot

Elane Heffeman

Eleanor Firman – Composer, teacher and Music Director

Eleanor Lisney – cofounder of DPAC

Ellen Clifford – Sisters of Frida

Elena Pecaric   -YHD Slovenia

Eric Day Equality and Disability LCIL  

7

F.R. Allen MBE

Fred Williams – excluded from ILF

Frieda Van de Poll – Artist

3

Gabriel Pepper

Gail Ward

Gaynor Jenkins

Geraldine Bentley – Director, Wiltshire CIL

George Lamb

GordonAmes

Gordon McFadden – CEO, Limbcare     

7

Helen Sims

Holly Meiszner               

2

Jamie Bolling-executive director ENIL

Jan Turner – excluded from ILF

Jane Heath

Jaspal Dhani – CEO UKDPC

Jean Goodrich

Jennifer Ames

Jenny Morris – author

Jerry Johnson – Finance Manager, Different Strokes

Jill Goble – DPAC,Brighton

Jo Lewis – Fundraising Administrator, Different Strokes

Joanne Hayes

Joanna Munn – CEO, GAD (GreenwichAssociation of Disabled People)

Jodie Mickleburgh – Office Manager, Different Strokes

John Hargrave

John Kelly

John James McCardale

John McGovern

John Newman

John W Smith

John Smith – GMCDP

Jonathan Hughes –

Jonathan Lee

Jonathan Toye

Jonathan Waddington-Jones

Judith Bond

Judith McNamara –DisabilityInclusionWorker PembrokeshireCountyCouncil

Julia Cameron – DPAC Islington

Julie kennedy

June Knight

29

Kay Trujillo

Kapka Panayotova-founder/director of CIL Sofia

Karen James

Karen Pointin

Kate Robinson

Kaliya Franklin – Broken ofBritain

Kenneth Hill

Kenny Bee

Kevin James

Kev Towner

Kirsten Hearn – Chair InclusionLondon

Klaudija Poropat-President of YHD Slovenia

13

Laurence Robb – MS Research, and standup4MS.blogspot.com- excluded from ILF

Les Woodward

Lianne Figg

Linda Burnip- co founder of DPAC

Lindsay Lotun

Lisa Egan – disabled daughter of ILF user

Liz Silver

LorraineAyres – Group Development Manager, Different Strokes

LydiaJ. Roe

Lyn Jeffries -YorkIndependent Living Network

Lyn Valentine

Lynda Hesketh– excluded from ILF, Chair Person, Chester Adult Phab Social Club

11

Magg Lauppen

Maria Zedda – Vice Chiar London 2012 disabilities Communities Engagement Group

Marion Lowther –South Walesdevelopment officer, Contact the Elderly

Mark Baggley – Chair, Choices and Rights Coalition

Mark Harrison –  CEO,NorfolkCoalition of Disabled People

Mark Newman

Mark Wilson

Mathew Wheatley

Martin Williams

Martine Miel – Sisters of Frida

Mary Fox

Maureen Vogels – member Black Triangle

Melanie Banton – Executive assistant, Council of Disabled people, Warwickshire andCoventry

Melanie Close – CEO Disability Equality Ltd

Michael Bricknell

Michelle Daley – Disability Equality Trainer

Moira McCall

Moira M Smith

18

Naomi Jacobs

Nirmala.G.Jivan

Neil Fergusan

3

Paul Martin –  PCS at ILF, Branch Secretary

Pat Onions disabled person and carer

Paul Smith – Atos Action group

Paul Swann – Policy Officer Disability Wales

Pauline Latchem

Penny Goring

Peter John Farrington

Peter Lambreghts – Expertise Centre Independent Living

Peter Lockheart

Phil Lockwood

Phil Stevens – Director Wales Council for the Blind

Phillipa Willitts

12

Rachel Huskisson

Ray Edwards MBE – Chair Limbcare

Rhian Davies – Chief executive, Disability Wales

Rhys Handley

Robin Bray- Hurran

Roger Lewis – DPAC Lambeth

Rosena McKeown

Rosemary O’Neil – Carer Watch

Roxanne Faulks – DP services manager, WECIL

Rudi Vogels – member Black Triangle

11

Sarah Coleman – Volunteer coordinator GAD CIL

Sarah Ismail

Sarah Simpson

Sasha Callaghan –  PastPresidentUniversityand CollegeUnion

Sedley Bryden

Sheila Blair

Sophie Partridge

Stacy Hoare

Stephen Brookes MBE – Coordinator DHCN

Stephen Hodgekins

Steve Burge

Steve Grinter – Education Secretary ITGLWFUKoffice

Sue Bott – CEO NCIL

Sue Fortune

Sue Marsh

Svetlana Kotava – Lawyer on Human Rights

15

Tanya Doolin

Tara Flood OBE- CEO, ALFIE

Theo Blackmore – DisabilityCornwalland Isles of Scilly

Theo Harris – CEO, Kensington Centre for Independent Living

Tina Coleman – mental health activist

Tracey Lizard – CEO Inclusion London

Tracey Veck – Wheels in Motion,Birmingham

7

Vicky Ayech

Victor Oliver

Vivienne Heuerman

3

Whalley Gordon

Willow Jacky – Carer and disabled person

Winston Thomas – Carmarthenshire Disabled Access group

3

Zoubeidah Lotun

1

 Family Carers/Personal Assistants – 33

Alicia Walker – PA

Anna Fitzpatrick – PA

Billy Ward – Parent carer

D. Gilligan – Carer

D.Ridley – Carer

Gemma Novis

Henry Bruce – Carer

J. Abdu – Carer

J. McCullough – Carer

J. Robson – Carer

J. Rymell – Carer

Jacqui Armston -PA

Jane Blake – PA

Jean Milne

John R Caley

Jonathan Novis

Kate Dudley – Kingston Carers network

Laura McKenna

Linda Dickenson

Marion Beazley – PA

Michelle Allen – PA

Mike Spinney

Nicole Bilsden – PA

S. O’Neill – Carer

Simone Meiszner

Steffanie Cook – PA

Steven Preace –Carers Circle

Terrine Johnson – PA

Trev Burnip

Veronica Birley

W. Coyle – Carer

Wendy Mortimer – PA

Vin West – unpaid Carer for ILF User and member of Wales Association for Citizen Directed Support

 Other supporters – 21

Amal Jama – OBAC- Supporting the Independence of People with disability.

André Keil

D. McGee

Dan Morton – SWAN

David Robertson Support Worker (Recovery Across Mental Health)

Gordon Eagling

Jo Walker

Jon Staley – Support Worker & Trainer

K. McGee

Kathryn Stone MBE – Director VoiceUK

Keithley Wilkinson – NHS Wales

Linda Lawty – Senior Advocate People FirstCumbria

Linzi Calvert

Lyn Whiteside BSc(hons) SRN

Natalya Dell

Rich Moth – Deputy National Convenor SWAN

Rosita Wilkins

S. Buttress

Shaaba Lotun

Tansy Feltis

Tehya Lotun

 Councillors/officials -2

– Alan Hunt – Access officer, Pembrokeshire County Council

– Cllr Roger Robinson- Camden Council;Chair- Camden Council’s Disability Scrutiny Panel &former CEO-Artsline

 Wales Assembly members -3

– Keith Davies – Assembly member

– Mike Hedges – Assembly Member forSwanseaEast

– Rebecca Evans – Assembly Member for Mid and WestWales

 MPs

Dave Anderson – Labour MP for Blaydon

Jim Sheridan – Labour MP forPaisleyand Refrewshire

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Sep 112011
 

On September 13th the Welfare Reform bill passes to the House of Lords for debate and to be voted on. This bill is based upon the ‘Universal Credit: Welfare that Works’ white paper that puts forward the Condem’s proposals for reforming welfare to work incentives, to simplify the benefit system and to tackle administrative complexity.

In short it seeks to destroy the welfare state as we know it and in many cases slash benefit claims to the point where increased poverty and homelessness will result.

DPAC say that Disabled People and Disabled Children should not pay the price for welfare reform. Please email as many Lords as you can. This needs to be done now or very soon so please take a few moments to do this if at all possible.

A full list of Lords email addresses can be found here or at this blog

Dear Lords,

We are writing to express our concern over numerous aspects of the current Welfare Reform proposals which you are now being asked to consider and vote on. Many of these measures will adversely affect the lives of disabled people and children and will in many cases remove disabled people’s rights supposedly guaranteed under the UN Convention of Rights of Persons with Disabilities. If passed as they are many of these changes will result in widespread increases in poverty and homelessness.

A number of our concerns include the introduction of Personal Independence Payments to replace Disability Living Allowance with a stated aim of reducing the number of claimants by 20% when the fraud rate for DLA is according to DWP figures only 0.5% and the social security advisory committee have said they can see no reason for the changes. Re-testing of claimants regularly although their conditions will never change will be a further waste of public money and will merely add another test for disabled people to fear.

The proposed removal of the Mobility component of Disability Living Allowance from all residents of care homes, resulting in a fall in their incomes of 66% and leaving them with only £22 a week for all extra expenses will cause genuine distress  for many residents as well as in most cases removing from them a right to family life. Many disabled people living in residential homes use this component to pay for either a mobility aid such as a wheelchair or to pay travel costs to see family and friends. One care home resident tells us that he has to pay his home 65p per mile to travel anywhere although the home is paid over £1,000 per week for his care and the drivers are volunteers. This is typical and without mobility allowance many disabled people will effectively become prisoners.

The proposed abolition of the Independent Living Fund coupled with the reduction of local authority funding will result in massive numbers of disabled people losing their right to live independently in total contradiction to the UNCRPD which was ratified by the UK government. This fund should not be scrapped without an adequate and ring-fenced alternative being put in place. In other countries where similar moves have been made the costs to the state increased as large numbers of disabled people ended up being admitted to hospital for lengthy periods of time. This proposal in particular will be disastrous for disabled people’s rights.

Restricting the amount of Housing Benefit entitlement to social housing tenants whose homes are larger then they are deemed to need is ill thought out as many disabled people have had costly adaptations made to their homes which they would lose if forced to move. There is also a massive lack of accessible properties available anyhow thus making it almost impossible for disabled people to find alternative accommodation. Further for anyone with a visual impairment or a learning disability it is often vital for them to remain in surroundings that they are familiar with and to maintain contact with medical and other professionals who know them well.

Another potential problem with housing is that the bill will link Local Housing Allowance rates to CPI index, which excludes housing costs. Already with the changes to LHA made it is becoming increasingly difficult for disabled people who have additional housing needs eg. to use a wheelchair, or have non-resident carers to find accommodation they can afford in the private rented sector.

Limiting of Employment and Support payments to 12 months for those in the Work Related Activity Group seem particularly illogical as disabled people’s impairments are not likely to go away and may in fact deteriorate. It ignores the effects of chronic, fluctuating conditions such as MS, ME, inflammatory bowel diseases etc.

In addition, the universal credit and welfare reform will bring in ‘a commitment’ for those who fail to ‘apply themselves’ to proper work seeking activities to tougher sanctions. Once again this will not address the complexity of employment related barriers that disabled people face, even if they really are ‘fit for work’. Cuts to Access to Work funding will put in place additional barriers to disabled people in trying to secure employment.

Caps on the total amount of benefit any claimant can get, for both housing needs and living expenses. The suggested total amount is £500 per week regardless of family size, or costs of housing. Ian Duncan Smith says this is to ensure that work pays however it totally ignores the multiple barriers that disabled people face in entering and remaining in the job market, and the fact that many families with disabled children are forced to give up work to care for them due to the lack of adequate alternatives.

Many families with disabled children will face a cut to the financial support they receive. The new system will result in these children losing up to £1400 per year The Government estimates that 100,000 disabled children would lose out under this change.

The reforms suggest that all claims should be processed via the internet which is not accessible for many disabled people. What alternatives are being proposed for those who do not have or cannot access this method of claiming.

We hope that you will ensure these issues are fully addressed before you vote on this bill, the future of disabled people now lies in your hands.

Yours faithfully,

(fill in your name and address)


Jul 062011
 

By Stuart Bracking

Disabled People Against Cuts believes the Supreme Court’s majority decision to reject Elaine McDonald’s appeal to keep her overnight personal assistants to help her with regular personal care tasks is a major setback for disabled people of all ages and their families.

This judgment will give a green light to local authorities across England and Wales to reassess care packages to find the cheapest way to meet needs, and allow them to impose solutions that may be against the wishes of disabled people.

By rejecting legal arguments concerning the human rights and disability discrimination acts that favour Elaine’s appeal, the Supreme Court will shatter disabled people’s confidence in the ability of the legal system to protect their rights.

In part of the judgment, Elaine is characterised as being difficult and rigid in her approach to alternatives presented by the Royal Borough of Kensington and Chelsea such as a live-in volunteer or sheltered accommodation.

The irony is that if an application to the Independent Living Fund (ILF) in 2007 had succeeded Elaine would have been given the resources to fund the overnight care she needs. This case would never have come to court if Elaine’s council had done its job properly.

While the Supreme Court gives a lot of weight to statements presented by her council that other disabled people who are not incontinent accept the use of pads or sheets to avoid the need for overnight care, they do not question the voracity of some of the council’s evidence, particularly where inaccurate information has been presented.

In the court of appeal judgment, it states in paragraph 13: ‘As it emerged, however, the ILF application failed, inter alia because Ms McDonald, on turning 65, ceased to be eligible for funding from it.’ Yet an independent review of the Independent Living Fund published in January 2007 by the respected academics Melanie Henwood and Bob Hudson confirms on page 5 that applicants had to ‘Be at least 16 years of age and under 66’. In fact at the time when Elaine left hospital in March 2007 when an application to the ILF had a strict deadline of three months she was 63, about to turn 64.

It saddens us that English and Welsh law that is so detrimental to the interests of disabled people is developed by expert legal minds that do not have a full grasp of the detailed issues before them.