Disabled People: Independent Living Fund
(10 years, 9 months ago)
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Baroness Campbell of Surbiton
To ask Her Majesty’s Government what arrangements they are putting in place to ensure that disabled people currently in receipt of money from the Independent Living Fund will not be left in hardship when the Fund is wound up next year and the responsibility for Fund recipients is handed to local authorities.
Baroness Campbell of Surbiton (CB)
My Lords, independent living lies at the heart of disabled peoples’ participation in their community. My interest in this concept is both personal and professional. Independent living support has enabled me to gain an education and enjoy a fulfilling career. Without it, I would be incapable of doing anything beyond the walls of my home. I am not alone; there are thousands just like me, who have been liberated by this support.
On 6 March, the Government issued a statement announcing, for the second time, their intention to close the Independent Living Fund, the ILF. Only the date of closure has changed: it has been put back to June 2015. Their first attempt at closure was challenged by a small group of disabled people who took the case to the Court of Appeal in 2013. The court ruled in their favour, announcing that the Government’s decision was unlawful under the public sector equality duty. The courts recognised that ILF users will be “significantly disadvantaged” if they have to rely solely on existing local authority provision, and that something more is expected of the Government to fulfil their obligations under the Equality Act and the UN Convention on the Rights of Persons with Disabilities.
One of the judges stated that if the forthcoming legislation on social care, or the code of guidance on transferring responsibility for ILF users to local authorities,
“does not arrive in time or turns out to be too anaemic in content to enable the Convention principles to be brought to bear in individual cases”,
then there would need to be reconsideration as to whether the public sector equality duty had been fulfilled. He also warned that,
“the level of Treasury funding for … this class of ILF users in transition back to”—
local authority provision—
“in particular is so austere as to leave no option but to reverse progress already achieved in independent living”.
I look forward to hearing from the Minister how the Government have addressed the concerns raised by the courts. Their equality impact assessment offers precious little reassurance on either count.
The Government’s decision to close the fund was not a surprise. Like so many government-funded initiatives to support disabled people’s independence, it fell prey to Treasury cuts and a shaky case for non-duplication and rationalisation. While the ILF budget has risen to the region of £290 million, this money helps over 18,000 severely disabled people, many of whom were previously dependent on expensive residential care or traditional day services. One of their biggest fears is of being forced to return to such provision when ILF funding ceases.
Times have changed. We now recognise that all Britain’s citizens, including those with the most severe disabilities, should enjoy the same life chances, freedoms, and responsibility to contribute, as everyone else. The days of mainstream institutionalised care should be behind us. As the deputy president of the Supreme Court said last week, when ruling that three disabled people had been deprived of their liberty in comfortable care facilities:
“A gilded cage is still a cage”.
Today, six out of 10 ILF users have some form of learning disability, and people—
The Deputy Chairman of Committees (Lord Bichard) (CB)
My Lords, there is a Division in the House. The Committee will adjourn for 10 minutes.
Baroness Campbell of Surbiton
To continue, today six out of 10 ILF users have some form of learning disability and people with significant learning disabilities are the highest single group, making up 33% of all users. About one-third of these use their ILF grant to enable them to live in supported accommodation. They and their families have paid tribute to how it has changed their lives, improved their health, expanded their horizons and, for some, opened up training and job opportunities. It became apparent when the fund was closed to new applicants in 2010 that this group would be particularly disadvantaged. The ILF told the Dilnot commission that:
“Many of these people have previously lived in residential care or long stay hospitals ... Local Authority representatives have told us that supported living placements for this group are becoming harder to finance since ILF stopped accepting applications”.
The Government’s consultation responses and impact assessment make it quite clear that ILF users will face a reduction in funding. This was confirmed by the response to the consultation from the Association of Directors of Adult Social Services and the Local Government Association:
“As ILF recipients transfer into the LA system in 2015, and are subsequently reviewed against”,
the local authority assessment criteria,
“the value of the personal budget calculated through the Resource Allocation System … will generally be at a lower level than the initial ILF/LA budget”.
Disabled people and their families are acutely aware of this prediction. They see their autonomy, independence and well-being slipping away. It is not surprising that they want to save the ILF because they mistrust local authorities’ ability to deliver independent living outcomes—outcomes which enable them to live in the community and not simply survive, the latter now being described by many as “clean and feed” provision.
Scope’s recent research evidence also indicates that local authority social care eligibility criteria and assessment based on personal care needs cannot hope to replicate ILF outcomes. It is true that equivalent funding is being transferred to local authorities, on a formula based on ILF estimates of what it would have paid recipients in each authority. However, the Government and local authorities are adamantly opposed to protecting this money via ring-fencing, so there is no guarantee that the funds will be used to support those transferring from the ILF. I can see the temptation to plunder the fund now: for mending potholes, funding crisis care or simply balancing the books. Let us not forget that the sum involved is a tiny fraction of further cuts planned in local government funding.
The Government giveth and the Government taketh away. For better or worse, the Government have decided to close the ILF. My concern now is that without proper protection and monitoring, the new process and procedures for delivery will fail to meet the 21st-century rights of disabled people to independent living, as articulated in Articles 19, 24 and 27 of the UN Convention on the Rights of Persons with Disabilities. It is clear that the courts share this concern.
Policy responsibility for future support for ILF users now passes to the Health Secretary and implementation falls within the framework set out in the Care Bill. I am a little bewildered that the Health and Social Care Minister is not responding to this debate: surely we are here to debate the future of independent living support, not the past. Along with my fellow Peers, I have worked closely with the Government to ensure that disabled people’s rights and responsibilities are embedded in the Care Bill: Inclusion London, Disability Rights UK and Scope have all produced constructive research evidence and practical ideas, shaping the continuity of care provisions, assessment procedures and much more. I want to see this model of collaboration throughout the ILF transition. In addition, regulations and detailed statutory guidance on the assessment of needs being prepared under the Bill must specifically address the needs of those transferring from the fund. Can the Minister confirm whether this is happening?
We have only 15 months to get the new structure for delivering independent living support fit for purpose. I am therefore asking the DWP, DCLG and the Department of Health Ministers for two immediate actions. The first is to initiate a reference group to oversee and monitor the effects of the ILF transition for two years. This group should work along the same lines as the current continuity of care group which involves disabled people, including myself, Government officials and local authority practitioners. Secondly, the Ministers for Social Care and Local Government should develop statutory regulation and guidance to ensure that the current principles and resources secured for independent living purposes continue after the transfer.
Without that twofold plan the Government are in jeopardy of undoing 30 years of independent living development, which has brought the most severely disabled people out from the shadows of dependency services. Let us ensure that they do not return to the back room, watching TV, or end up in 21st-century “gilded cages”. I look forward to hearing the Minister’s response, and very much look forward to this debate.
Lord Cormack (Con)
My Lords, I can say “Amen” to that. We are all greatly in the debt of the noble Baroness, Lady Campbell, not only for the way in which she has introduced this debate today but for the shining example that she gives us all, day in, day out, when she is in this building. I first became conscious of her presence on a Sunday afternoon in August. I was listening to “Desert Island Discs”, and had to pull into a car park because I did not want to be early for my lunch until I had heard everything that the noble Baroness had said and had chosen. That was the most inspiring episode of that programme I have ever heard. We have here someone who has overcome enormous disabilities to be a leader, and is a Member who plays a very full part in the deliberations of your Lordships’ House. We should listen with respect and care to what she has said.
It seems that the die is cast as far as the Government’s decision is concerned. Personally, I regret that. We now have to ensure that the things that could happen do not happen. We must not give the disabled in our midst a postcode lottery, and there has to be a guarantee of help which is at least the equivalent of that to which they have become accustomed. However, inevitably, there is a feeling of real concern and doubt in the disabled community, and I hope that when my noble friend comes to sum up this debate, he will be able to put all our minds at rest. There is a duty upon whoever is in government to help those who are least able to help themselves without the sort of assistance that they have had over the past 30 years. Coming in from the cold, out of the shadows—one can use various expressions. However, the fact is that this fund has enabled people to fulfil themselves in a way that was not possible before. What we all need, as we struggle with life, is independence, security and stability.
For many of us, it is not too difficult to have those three things, but for those who labour under great disability, it is. I cannot begin to say that I understand fully or even partially the sort of obstacles that the noble Baroness has so valiantly and inspiringly overcome. However, we all have problems from time to time that make us just a little aware of those obstacles. When I broke my arm once, and for six weeks could not use my right hand at all, I became a little conscious of them. Last year, as some of your Lordships will know, I was hobbling around with a stick because I had a particularly bad back. I thought that I faced spinal surgery—and thank God I did not. However, during that period I became acutely conscious of what some of my colleagues in this House have overcome. They are an inspiring example to us all.
I cannot understand the logic of winding up the fund. I find it difficult. But it is incumbent upon the Government to answer with real conviction, dedication and determination the points put by the noble Baroness, Lady Campbell, in her concluding remarks. Knowing my noble friend, in this place and in another one, I know that he is a man of real compassion and I hope he will be able to set our minds at rest.
It really would be appalling if in June 2015, when we are all celebrating the birth of the rule of law in the meadows of Runnymede in June 1215, we foreclosed on some of those in our society whose need is particularly great. If anyone deserves practical compassion, it is the noble Baroness and those like her. I thank her for all she has done. I thank her for the inspiration she gave us this afternoon, and I look forward in hope and expectation to the Minister being able to put our minds at rest.
Baroness Hollins (CB)
My Lords, I congratulate my noble friend on introducing this debate and on her advocacy for the right of disabled people to live independently. My own interest derives from my work as a psychiatrist with people with learning disabilities for more than 30 years, and as the mother of two disabled adults.
The Independent Living Fund provides important support for more than 18,000 disabled people. I know that many people with a learning disability, particularly those with profound and multiple learning disabilities, have benefited from the fund. The Government’s view that such a discretionary fund should be subsumed into the mainstream social care budget of the local authority might perhaps be an agreeable one if social care were not being so horribly squeezed already and if people with disabilities were not already being adversely affected by cuts to welfare benefits.
My noble friend referred to the serious delays to progress in the post-Winterbourne View programme that aims to move people who are in institutional or supposedly specialist hospital care back into their home communities. This has been held up. Local authorities seem to have no incentive: it is cheaper for cash-strapped local authorities to admit people to NHS or private specialist hospitals than to provide skilled suitable support for them at home.
In the past three years, an estimated £2.68 billion has been cut from adult social care budgets—a figure cited by the Association of Adult Directors of Social Services. Of course, the result has been a tightening of the eligibility criteria, meaning that many people have already lost much-needed support. The Care Bill, a very welcome piece of legislation, sets a national eligibility threshold that is intended to bring consistency across the country. However, the Government have said that they will set the threshold of care at “substantial”, meaning that many people—I am thinking here of people with learning disabilities—will lose out and find their independence threatened. Such a restriction will undoubtedly leave local authorities struggling to deliver on the new well-being principle set out in the Bill.
Organisations such as Mencap, which assisted with research for my speech today, and others within the Care and Support Alliance have highlighted the impact on those with mild and moderate needs losing care as the threshold rises. A few hours of care a week for someone with a mild learning disability might be the difference between living independently and being alone and lonely at home. It might mean being supported to get out into the community, being involved in leisure activities, being helped to organise money and pay bills, and being less vulnerable to exploitation. Last week I watched a play performed by a theatre company of actors with learning disabilities. The play was called Living Without Fear. The actors illustrated graphically the lives of people with inadequate support living at home, and the kind of disability hate crime and exploitation that some people with inadequate support will face.
Many people rely on relatively cheap and low levels of care. The loss of such care risks isolating them and denying them independence—something, of course, that is central to this debate. The Independent Living Fund supports a number of people with low or moderate needs. It is members of this group who might well be hit twice. The focus of the fund on supporting independence could be lost by being subsumed into a general adult social care budget. One worry I have is that the welcome move toward supported living for people with learning disabilities will be slowed down now with a retreat to a residential warehousing model of care, which we have been working so hard over the past 30 years to turn around.
Like the noble Baroness, Lady Campbell, I look forward to the Minister’s response on how the transition will be handled, particularly in light of the increasing financial constraints faced by local authorities. I am interested in the Minister’s comments on how the effects of the abolition of the fund will be evaluated and reported.
Baroness Wilkins (Lab)
My Lords, the Government have been given the clearest of warnings that their plans to close the Independent Living Fund and transfer its responsibilities to local authorities could relegate thousands of disabled people to residential care—either that or they would be living such reduced lives that they would be deprived of their current ability to live independently, have a family life, be educated, be employed, do voluntary work and contribute to their communities. Is the coalition Government honestly willing to accept this? Do they understand the wholly justified fear that this decision has generated?
I congratulate the noble Baroness, Lady Campbell, on securing this debate, and I look forward to the Minister’s response to her positive suggestions on ways in which this miserable situation can be alleviated. It is just not possible for the Government to deny that we have a crisis in social care. Only this past week, the Nuffield Trust reported that a quarter of a million older people have lost their basic social care over the past four years due to cuts in council budgets. The report’s authors warned that the NHS and Government are now “flying blind” in planning services for vulnerable people because there is no way of assessing the true impact that social care cuts are having on their lives.
Over the past three years, £2.68 billion has been cut from adult social care budgets despite the increasing numbers of working-age disabled people needing care. Research contained in the report The Other Care Crisis last year found that this is having a significant impact on the ability of disabled people to live independently; 40% of respondents said that the social care services do not meet their basic needs, such as washing, dressing or getting out of the house. How can the Government support a policy which now probably condemns another 20,000 to join that fate?
This is the situation we face, yet somehow the Minister for Disabled People, in his Statement on 6 March, could say:
“The key features that have contributed to the Independent Living Fund’s success, in particular, the choice and control it has given disabled people over how their care and support is managed, are now provided, or are very soon to be provided, within the mainstream system”.—[Official Report, Commons, 6/3/14; col. 143WS.]
I take it that the Minister was basing his argument on the Care Bill, with its very welcome introduction of the well-being principle in Clause 1. But this principle does not include key concepts of independent living, such as choice, inclusion and equal participation.
How soon will it be that a local authority argues that a former ILF user’s well-being is being met in residential care, despite it being totally against the individual’s wishes or choice? All attempts by the Labour Opposition in the Commons to include independent living in the well-being principle were voted down by the Government. Moreover, as we constantly argued during its passage, the Care Bill has little chance of achieving its aims without sufficient finance. First it has to overcome the current £1.2 billion shortfall in funding social care for disabled people under 65, let alone care for older people. I feel sure that the Minister will cite the £3.8 billion joint health and social care funding—the so-called “better care funding”—as the solution. Welcome as this is, it is not new funding. NHS England and the Local Government Association have pointed out:
“The £3.8bn pool brings together NHS and Local Government resources that are already committed to existing core activity”.
The fundamental question that lies behind this debate is whether social care is capable of delivering a right to independent living. Disabled people have been striving to establish this for the past 30 years. Far from abolishing the ILF, we need a system which builds on the way it has enabled thousands to live ordinary lives. We need a system based on universal principles, which funds the additional costs that disabled people have—of all ages and across the whole range of impairments and long-term health conditions. It needs to be a nationally consistent system, with no element of postcode lottery.
The noble Baroness, Lady Campbell, has proposed to the Government a way to alleviate the misery of the policy they are adopting. I hope that the Minister will grasp it and at the very, very least persuade his fellow Ministers to ring-fence the ILF funds when they are transferred.
Lord Low of Dalston (CB)
My Lords, I am grateful to the noble Baroness, Lady Campbell, for initiating this debate on replacement arrangements for the Independent Living Fund. Closure of the ILF potentially represents a crisis in funding to support the independent living of a significant group of some of the most severely disabled people in the United Kingdom.
The ILF is a national scheme providing financial support for almost 20,000 disabled people to live independently in the community rather than in residential care. It was originally set up in 1988 as a temporary measure to mitigate the impact of implementing new community care legislation and a review of social security benefits for disabled people which was being undertaken by the Government of that time.
However, the desire of disabled people to live more independently was vastly underestimated. Within its first year, the fund attracted 900 applications a month, later rising to more than 2,000. The fund proved very popular. It worked very well. It met a real need and, as a result, has survived to this day, supporting nearly 20,000 disabled people, many of whom have some of the most severe and complex needs.
In June 2010, the Government closed the fund to new applicants. In December 2012, they proposed to abolish it altogether. In November 2013, the Court of Appeal ruled against the Government’s decision to abolish the fund. However, on 6 March this year, as we have heard, the Minister for Disabled People announced his intention to close the fund anyway, on 30 June 2015.
The Government’s thinking is that the ILF should close and funding will be transferred to local authorities so that current claimants can be supported through the mainstream adult social care system. I recognise that the ILF is something of an anomaly, falling as it does on the DWP budget and sitting outside the mainstream system of social care funding. However, sometimes it is appropriate that the imperatives of bureaucratic tidiness should give way to the pragmatism of what works.
I acknowledge that the Government have said funding from the ILF will be transferred to local authorities and the devolved Administrations. However, this must be judged against the state of social care funding. Cuts to local authority budgets of more than 20% since 2010 have had a devastating impact on social care provision. The amount spent by councils on adult social care has fallen by £2.8 billion, or 20% between 2011 and 2014, and the Audit Commission’s Tough Times 2013 report, published at the end of last year, found that while reductions in adult care accounted for 14% of council cuts between 2010-11 and 2011-12, they will account for 52% in 2013-14.
Consequent pressures on local authority budgets have meant that thresholds for care have risen dramatically, meaning that fewer disabled people qualify for social care. Since 2008, 97,000 fewer disabled people aged 18 to 64 have received social care, and even those still eligible for care experience the rationing of support. In these circumstances, the Government’s assertion that the social care system will simply pick up where the ILF left off is unrealistic in the extreme. This is especially the case when it is realised that the £320 million that the ILF currently costs will not be ring-fenced when it is transferred to local authorities.
As the Government have stated their intention to set the new national eligibility threshold at a level equivalent to “substantial”, the more than 3,000 ILF claimants in group 1, a significant proportion of whom have low or moderate needs, will likely not receive any support to live independently once the fund closes. Without this support, ILF claimants will find it harder to live independently and risk being forced to live in residential care, breaching Article 19 of the UN Convention on the Rights of Persons with Disabilities, which sets out the equal right of all disabled people to choose to live in the community and government’s duty to take effective and appropriate measures to facilitate this right.
Like everybody else, I want to ask the Minister what replacement arrangements for the fund it is proposed will be put in place. With the closure of the ILF, I want also to ask whether the Government will commit to developing a strategy for local and central government to support disabled people to live as independently as possible. As part of such a strategy, will they make independent living a key outcome for delivering social care for disabled people?
The ILF system, however flawed, exists in recognition of the fact that people with high support needs are at particularly high risk of social exclusion. They face particular barriers to living independently in the community and their needs in this regard are not adequately addressed by mainstream provision. By taking away the support provided by the Independent Living Fund, the Government, whether intentionally or not, are sending a message that independent living for disabled people is not a priority for either local or national government. That is at the heart of the concerns that disabled people who receive support through the ILF are expressing.
Lord Kirkwood of Kirkhope (LD)
My Lords, it is a pleasure to follow the noble Lord, Lord Low of Dalston. I entirely agree with his concluding point that the needs of people who have multiple impediments are not being properly taken account of. I join others in congratulating the noble Baroness, Lady Campbell of Surbiton, on introducing this debate. She is being entirely realistic in the demands that she makes, and I support both of them. I hope that the Committee will not allow the Minister to duck both the propositions that she put: first, her idea of a reference group to monitor the two-year period that is just about to unfold; and secondly, the possibility of regulations and guidance that would continue thereafter. These are both entirely appropriate and I agree with her desire to bring them about.
Like some other colleagues, I am a refugee from the days when the 1988 regulations were put in place by that great man, Lord Newton, and Nick Scott. Those were the days of an enlightened Conservative Administration—some of us remember that. There was a real problem in 1988, and Tony Newton cut through some of the difficulties of moving the supplementary benefit into the new social security system and was enlightened enough to set this thing up.
We would be moving in entirely the wrong direction if the Independent Living Fund was closed. One of the books I received for Christmas—I am still reading it because it is very, very thick—is Andrew Solomon’s Far from the Tree: Parents, Children and the Search for Identity. It is inspiring and I recommend it to the Minister in particular because it might occupy his time and prevent him from getting involved in anything more nefarious in the department. It is an inspirational book because it shows what can be done with proper support. It also shows what can be done regarding employment if there is adequate support.
The simple point I want to make is that if you look at the work being done by the noble Lord, Lord O’Donnell, on the question of well-being and the inadequacies of using GDP and simple monetary ways of measuring some of these issues faced by severely impaired individuals, we are missing an opportunity. Some of the case histories that Andrew Solomon considers in his book represent positive contributions to the families. In those cases, not only is well-being demonstrably and undeniably increased but they create a business case for preventive spending for the long term. If people get into work, they do not need nearly as much financial support. With assistance, they can trade their way out of difficulty.
Looking forward, the idea is not easy and is still novel. We should be testing whether systems such as the Independent Living Fund can be reconfigured in a way that considers spending as preventive. The reference group that we are thinking about setting up here—I hope that the Minister can consent to that—could additionally be tasked with looking at individual examples in which severe impairments are faced by family members and at how they can be turned around into success stories, and in which the well-being of everyone involved can be increased. That is a very interesting aspect of public policy that we are missing at the moment, and from which we are stepping away by closing the Independent Living Fund. We are doing the wrong thing. I would personally agree to the setting up of a reference group such as that suggested by the noble Baroness, with guidance to examine in a more informed way the issues and possibilities for preventive spending.
Like my noble friend Lord Cormack, I am already a signed-up member of the fan club of the noble Baroness, Lady Campbell of Surbiton. I will therefore follow her lead and support her in every way that I can in trying to establish the reference group that she is asking for.
Baroness Grey-Thompson (CB)
My Lords, I thank my noble friend Lady Campbell of Surbiton for tabling this debate.
In my time in your Lordships’ House, I have had the pleasure of participating in, among others, the passage of the Welfare Reform Act and the legal aid Act, and the Care Bill. Through the legislation that has been passed we will see some of the biggest changes to the lives of disabled people in many, many years. While there have been varying amounts of media coverage over the welfare and legal changes, the effect of disbanding the Independent Living Fund has happened rather under the radar—perhaps because the role and funding available has been gradually eroded over time.
Inclusion London has argued that the ILF provided both value for money and value for disabled people. The ILF has only about 2% overhead costs, compared to 16% on average, for local authorities. The £350 million the ILF costs in government funding each year supports around 20,000 disabled people. This equates to, on average, £17,500 per person, equivalent to approximately £337 per week, or £48 per day. This compares—I was going to say “very well”—extraordinarily well to the notorious Winterbourne View private hospital, where the average cost was £3,500 a week.
The user base of ILF is mostly young disabled people; only a small percentage, around 6.4%, is over 65 years old. The ILF has had consistently high user outcome satisfaction, ranging from 94% in 2009-10 to 97% in 2012-13. Perhaps that was because it was centred on the person. I, like many, was extremely disappointed that the journey of the ILF appears to have been so tortuous recently and that disabled people, having been through the High Court case, were thrown a lifeline only to have it removed again. That was very ably explained by my noble friend Lord Low.
Baroness Grey-Thompson
My Lords, it is important to remember that the Independent Living Fund was designed to give disabled people the same rights as anyone else: to work, to socialise, to have a family, to participate in society and—I know it sounds a bit dramatic—just to live. That was brought home to me when a number of people got in touch with me because of this debate. Fran said that it enabled her,
“to live, not just exist”.
Right now, I feel very lucky that, at least for the time being, I do not have care or support needs.
We are debating this issue at a time when the media coverage surrounding disabled people is inherently negative. You only have to scan the coverage to see that they—or rather, “we”—are being portrayed as scroungers and skivers who are a drain on society. The size of the welfare budget is endlessly debated, but what it widely encompasses is usually not. Scope’s report, which was launched this morning, highlighted how little attitudes have changed in many areas over the past 20 years.
My real worry is that it will become “too expensive” for disabled people to live independent lives. If the funding is not ring-fenced, a disabled person’s independence is balanced against a contribution to, say, upgrading street lighting. There is a real danger that it becomes a decision about the benevolence that we choose to bestow on disabled people rather than something that should be clearly defined.
I mentioned that a number of people got in touch with me, and this is a snapshot of what I was told. Sue told me that they would move from being able to fit care plans to people’s needs to having to plan around care visits. Jackie said that once the ILF goes, so does the safety net around disabled people. Rachel said that disabled people are frightened for their future, and that they may be made to live in care homes. Fran, who I quoted earlier, gave a very balanced response:
“By employing and managing my own support, I create full time permanent jobs for personal assistants on a living wage at zero profit (I manage, including paying Tax and NI and recruit my staff for free) rather than carers on zero hour contracts on min wage with private companies profiting. Also it has been strongly evidenced that this central fund costs less than equivalent social services support per hour, due to low central administration and overhead costs, so care packages will need to be cut to create any saving. I am deeply scared this is putting thousands of Disabled people back to the pre-1980s era—unseen, institutionalised or trapped at home with inadequate support”.
I believe that the time to save the ILF in this format has passed. However, I like the idea put forward by the noble Lord, Lord Kirkwood, that we need to reconfigure what we are doing. It is essential that what happens from here, and the protection of the budget, get the urgent consideration they require.
Lord McAvoy (Lab)
My Lords, I add my congratulations and thanks to those of colleagues who thanked the noble Baroness, Lady Campbell of Surbiton, for her integrity in bringing us here and for the quality of her presentation. The quality of presentations from other colleagues has also been first class.
The closure of the Independent Living Fund is a truly reprehensible decision, which is already causing recipients of the fund immeasurable hardship. The fund has served disabled people well. For those in receipt of the fund there is now a continual anxiety and fear about what comes next.
Like other colleagues, I press the Government to say what arrangements they are making to communicate with recipients of the fund and with local authorities. Responsibility will be devolved to local authorities from June 2015, but there remains no comprehensive strategy for implementation. Is it really the case that local authorities have no information on how the fund is to be devolved, divided, or maintained? What discussions are the Government having with local authorities?
Even more importantly, what is being done to inform recipients of the changes being made and to guide them through them? The closure of the ILF is already adversely impacting upon recipients lives; many feel ignored and marginalised. Worryingly, the Government’s equalities analysis, which the courts forced them to carry out, is full of imprecision. The Government seem unsure of the actual effects their policy will have. Some £262 million will be available to local authorities and devolved Administrations in place of the ILF in 2015-16, but what will happen after that date? The money being given to local authorities, as I think every Member of the Committee has mentioned, is not ring-fenced. Local authorities’ social care budgets were cut by £893 million in 2012-13 and will be cut by a further 28% in 2013-14. It would be unsurprising if cash-strapped local authorities used this money to mitigate the effect of these cuts. What protections are the Government putting in place to ensure that this money is used appropriately? Why is the money not being ring-fenced?
It is clear that local authorities will have to apply their own assessment and eligibility criteria unless the Government build in some form of protection on transfer. Why have the Government not done this and what assessment has been made of this likely postcode lottery? That concern was also raised by the noble Lord, Lord Cormack.
It has been suggested that existing social care support assessments provide a means for determining support. However, in submissions to the Government’s consultation, several local authorities reported that group 1 users may not meet social care criteria. The equalities assessment noted:
“For those Group 1 users not in receipt of any support from their local authority, the loss of ILF funding will most likely have a significant effect”.
This represents 40% of group 1 users. There is a clear identification of risk to these people. What is being done to address this?
There is a disturbing lack of information on what is going to happen after June 2015. It is essential that recipients and local authorities have more information and are kept informed. What guarantees are the Government planning to ensure that former ILF funds are spent correctly? What protections will there be for group 1 recipients who are not in receipt of local authority support? These issues are already causing immense distress to disabled people and, if they go unaddressed, will cause serious hardship. Like the noble Lord, Lord Kirkwood of Kirkhope, I fully support the call of the noble Baroness, Lady Campbell, for a reference group. If there is no one there to fight the corner of people who are less able than the majority around them, they will in my opinion inevitably suffer. I call on the Government to respond to the noble Baroness’s call for a reference group.
Lord Bates (Con)
My Lords, first, like all noble Lords in this debate, I pay tribute to the noble Baroness, Lady Campbell of Surbiton. My noble friend Lord Cormack was absolutely right in his tribute to her as a shining example in this place, and he gave me the injunction to listen to her with care and respect. That is absolutely what we will do in the way in which we are responding to the debate, and in seeking to provide the assurances that are being sought.
We have heard about the valuable role that the Independent Living Fund has played and continues to play in enabling severely disabled people to live independently. The noble Baroness, Lady Campbell, talked from her personal experience, and the noble Baroness, Lady Grey-Thompson, referred to the feedback that she had received from people who had written to her. The reality is that the Independent Living Fund had been a significant success. The noble Lord, Lord Low, referred to the popularity of the fund when it was instituted in 1988. Over the past 26 years, the number of people whom it has helped has gone up from 300 to 20,000 at its peak, and now down to around 18,000. These changes mean that the features that have contributed to the ILF’s success are now, or very soon will be, available within the mainstream system across the UK. It is also the case that the ILF has always benefitted from the relatively small proportion of the severely disabled people who use the mainstream adult social care system, numbering about 1.3 million. Indeed, that broad care for disability is something that the noble Lord, Lord Kirkwood, referred to as coming from an enlightened Administration in the shape of the much missed Lord Newton. I served in that department as a PPS—although, I have to say in these times, not in a nefarious way at all—in supporting Nicholas Scott as he was taking forward that excellent piece of legislation, the Disability Discrimination Act 1995, which was really a sea change in the way that disabled people were treated and respected in our society.
On 6 March the Government announced the closure of the ILF on 30 June 2015. Funding will transfer to the English local authorities and the devolved Administrations. Local authorities in England will take direct responsibility for meeting the eligible care and support needs of ILF users. The devolved Administrations can decide how they wish to support ILF users in Scotland, Wales and Northern Ireland.
Significant points have been raised and we want to look at them very carefully. In relation to the reference group, which the noble Baroness, Lady Campbell, referred to, the ILF is committed to working in partnership with local authorities to ensure a smooth transition for users. The transitional arrangements now being implemented were developed from an extensive engagement between the ILF and a wide range of stakeholders, including local authorities across the UK, charities and other organisations representing disabled people, and ILF users themselves, 2,000 of whom responded to the consultation. Therefore, we feel that the consultation has been carried out and we do not think that such a group is necessary at this time.
The subject of visits was raised by the noble Lord, Lord McAvoy. Before June 2015 each user will be visited by the ILF, accompanied wherever possible by a local authority social care worker. These visits are designed to review the individual’s current support package to ensure a joint understanding of the outcomes being secured and to address concerns about transition. Once the programme of visits is complete, the ILF will contact local authorities to ensure that they have all the necessary information about every individual user in their area.
A number of noble Lords, particularly the noble Baroness, Lady Wilkins, mentioned the court case. Because of that uncertainty, a programme of visits to each and every one of the 18,000 people who are going to be affected had to be halted for a time as the closure of the fund was quashed. That has now restarted. There is no doubt that the level of anxiety understandably felt by those people who do not have a support plan begins to reduce once a plan is in place. We believe that that trend will continue as we move forward.
In terms of the essential nature of how we interact with the local authorities, a code of practice is now in place between the local authorities and the ILF. It has been drawn up with the Local Government Association. One of the reasons why—in fact, probably the reason why—we are now contemplating removing, in the words of the noble Lord, Lord Low, this anomaly and trying to bring it into the mainstream is that the quality of care provided at a local level by local authorities, on all the evidence I have seen, has risen dramatically over the past 25 years, to a point where that can be now considered. I will come on to the central part of that, which is the Care Bill. But there is that code of practice, which sets out the criteria for those visits to be undertaken with support and, crucially, that it is the duty of the local authority to ensure that the support plan is in consultation with a current member of the Independent Living Fund. If they are not satisfied with that, then it is also the duty of the local authority to signpost them in the direction of where they can receive advocacy and support in order to address their concerns and make sure that they actually get the help that they need, delivered in a seamless way.
I acknowledge the depth of concern shared by many users about how this decision could affect them. Some are concerned that they will not qualify for local authority support or that reductions to their care packages will mean that they cannot secure the independent living outcomes that they now achieve. This was a point raised by several noble Lords. It is right to address some of these issues in more detail. Local authorities already have a statutory duty to fund eligible care needs. The Care Bill will introduce a new national minimum-eligibility threshold for England in order to receive support from the Independent Living Fund. The two are very much part of the package.
The majority of current users, around 15,200, must have local authority funding of at least £340 a week. It is reasonable to assume that this group have support needs that mean that they will qualify for support from their local authority. In fact, that point, which my noble friend Lord Cormack raised, about having the minimum guarantee, I think is contained in that minimum eligibility and also in the code of practice. It is also right that the Government consider the position of all disabled people. The noble Lord, Lord Low, referred to the point about the slightly anomalous position about disabled people deciding about the Independent Living Fund—rather, the position of all disabled people when deciding how best to distribute the available resources—but does not believe that continuing with the current two-tier system is the right approach. It is becoming increasingly difficult to justify the present arrangements.
On the position for those who applied to the ILF before 1993, the noble Lord, Lord McAvoy, referred to group 1 and group 2 cohorts who are treated slightly differently. The position of those in group 1, ILF before 1993, some 2,800, is less straightforward. Some of this group may well have needs that fall below the new minimum threshold and will not therefore qualify for local authority support. Most of them, however, do have some local authority support, with almost 27% getting more than £600 a week. This suggests that many will be eligible for local authority support once the ILF closes. The noble Baroness, Campbell, and others mentioned the UN Convention on the Rights of Persons with Disabilities. We do believe that it is compliant with this and are taking great care and careful note of this. The noble Baroness also questioned why a spokesman for the Department for Work and Pensions was responding to the debate rather than the Minister for Health and Social Services. Of course, for historical reasons, the Minister for Disabled People—we talked about the late Sir Nicholas Scott—has always resided within the Department for Work and Pensions. He has, however, a collective role in co-ordinating all responses across Government for and in the interests of disabled people.
Legislation coming into force from April 2015 aims at promoting greater independence and will increase choice and control for disabled people. The Care Bill represents the most significant reform of social care in England in more than 60 years. Local authorities will be required to take individual well-being into account when making decisions about care and support, including the outcomes we want to achieve. The Bill will give users of the social-care system the right to a personal budget, which so many members stress as being critical and instrumental in giving a sense of independence and dignity to disabled people. Broadly similar legislation has come into force in Scotland, and will come into force in Wales in 2015.
I want to respond to the comments made by the noble Baronesses, Lady Hollins and Lady Wilkins, and others about funding. Social care expenditure has not fallen by 20%—£2.7 billion—since 2010-11; £2.7 billion represents the savings that councils have had to make to meet demand. Spending has been roughly flat in cash terms over the period, and the latest survey shows that councils are expecting a small increase in expenditure over the next year.
The noble Baroness, Lady Wilkins, asked about statutory guidance, as did the noble Baroness, Lady Campbell. The Government’s position on how local authorities manage their finances is clear: they should have the freedom to meet their statutory responsibilities flexibly and responsively in line with local priorities. I hear the point made about a postcode lottery. It is a phrase which rolls off the tongue, but I am sure that the noble Baroness, who knows these areas very well, would acknowledge that there are wide differences in the take-up of the Independent Living Fund between local authorities. For example, wide differences in take-up have always existed between England and Scotland. We believe that through establishing the code of conduct, through having those personal support plans and, most crucially, through instigating the minimum-eligibility criteria that the Care Bill upholds, these dangers will be minimised.
The noble Baroness, Lady Hollins, asked about monitoring and evaluation. We said in the equality analysis which took place following the court decision that we are committed to monitoring the impact of all policies relating to this area. I give a personal undertaking to relay to my colleagues at the Department for Work and Pensions the concerns raised by noble Members of this Committee today to ensure that we have the right monitoring system in place and that those who need this vital help continue to receive it.