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to one of his constituents Michael Ellis MP referred to “the independent review carried out under Labour” as not “outdated” and as supporting the opinion of the former Minister for Disabled People Maria Miller that the Fund is unsustainable[1].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. 

 

 

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