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27 Mar 2008 : Column GC111

Grand Committee

Thursday, 27 March 2008.

The Committee met at two o’clock.

[The Deputy Chairman of Committees (VISCOUNT SIMON) in the Chair.]

Learning Disability: Adult Social Care

The Deputy Chairman of Committees (Viscount Simon): It has been agreed that, should any of the Questions for Short Debate not run for their allotted hour this afternoon, the Committee will adjourn during pleasure until the end of the hour. Therefore, each of the Questions for Short Debate will start on the hour.

2.01 pm

Lord Rix: I thank noble Lords for attending today's debate—we are, I fear, the usual suspects—to discuss how the needs of those with a learning disability will be addressed in the Government's forthcoming paper on future funding for adult social care. You will appreciate that, as president of the Royal Mencap Society, this subject is close to my heart. Mencap is a leading member of the Learning Disability Coalition, which is at the forefront of the campaign to ensure that this Green Paper fully addresses the demographic changes which will necessitate, and already are necessitating, greater social care support for those with a learning disability.

Currently, only 120,000 people out of the 1.5 million people with a learning disability receive support from social services. Many of those who receive support have had it reduced because of pressures on social care budgets. That means fewer hours at a day centre and fewer hours of help with washing, shopping and attending social activities. Others have been totally excluded from care as cash-strapped councils tighten their eligibility criteria. For all the people affected, that means that their quality of life has deteriorated. Many languish at home instead of being able, like their non-learning disabled peers, to reach their potential.

The Commission for Social Care Inspection has referred to these people as becoming “lost in the system” and has confirmed that the tightening of eligibility criteria is set to get worse with 73 per cent of councils stating that next year they will be able to support only learning disabled people with severe or critical needs—means testing by another name. That means that three-quarters of councils' learning disability budgets are under-resourced.

Individual stories of hardship, as a result of this tightening of eligibility criteria, are beginning to emerge. The other day I heard from a 70 year-old mother and an 80 year-old stepfather who support their 41 year-old son, Philip, in the family home. Previously, Philip enjoyed a total of nine weeks' residential respite at a local unit three miles away from home. He also had six tea-time visits a year. The family described this respite as a “life saver”, giving them a chance to relax and carry out their household tasks. They also had access to a 24-hour emergency support service.



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I believe you will be as shocked as I was to hear that most of this system of support has been withdrawn. In their own words, the family says:

The care services Minister has announced a review of eligibility criteria, and for this we are grateful. However, stories such as Philip's show how urgently action is needed and that these alarming reductions in the availability of social care need to be addressed in the forthcoming Green Paper.

Another worrying story concerns a 43 year-old man, Andrew, whose father contacted the Learning Disability Coalition. Andrew suffers a range of physical and mental disabilities. His father says that,

The underfunding of adult social care in his area has meant that the vital one-to-one support that Andrew's daycare centre provided has ceased. Andrew used to have the capability to communicate vocally with a few words and short sentences, through which he could indicate his needs. However, Andrew's father says,

That widening reduction in services, caused by a lack of adequate resources, will make it near impossible for the Government to deliver the admirable policy promises they have made to people with learning disabilities. Those promises have been set out in Valuing People Now, Improving the Life Chances of Disabled People, Putting People First, the Independent Living Strategy, and others. Those government plans have raised the hopes and expectations of people with a learning disability and their families. However, as the excellent report from the Joint Committee on Human Rights said earlier this month,

The Commission for Social Care Inspection has also commented that,

Indeed, removing day-time activities for people with Down’s syndrome and other forms of learning disability can lead to early onset of dementia and mental health problems. Withdrawing support from people to take exercise endangers their health and encourages obesity. Apart from the impact on people's quality of life, that will cost more in the long run than the cost savings made. This shortfall in funding is making a mockery of the Government's prevention agenda.

The Green Paper provides the Government with the perfect opportunity to get to grips with the current failure to resource properly the services they have promised people with learning disabilities. The

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Government have talked a great deal previously about this Green Paper's agenda to tackle the problems of an ageing population, but they have not talked nearly enough about how they plan to address the social care needs of adults with a learning disability. There are significant differences between the social care needs of people with learning disabilities and older people. Many people with learning disabilities need care packages for life and those packages will need flexibility so that they change as their needs and aspirations change.

Co-payment, which is such a pertinent issue in funding the care of older people, is unlikely to be relevant for people with learning disabilities as many of them remain, regrettably, some of the poorest and most socially excluded in the country. I am delighted to say that more people with a learning disability are surviving infancy and are living much longer than ever before. However, improvements in neo-natal care mean that the number of babies surviving with profound and multiple learning disabilities is increasing. Such babies may need costly care packages. This is adding yet further to the pressure on social care services which, as we have seen, are already struggling to meet demand.

Another issue is that 60 per cent of people with a learning disability live with their parents. As these sons and daughters live for longer, many elderly and frail parents and families will no longer be around to care for them in the family home. Unfortunately, there is not enough up-to-date information about the trends in demand for services for people with learning disabilities to make accurate projections of how those numbers are increasing and what the likely future costs will be. We need a great deal more evidence if we are to ensure that we allocate sufficient resources to provide the accommodation and support that people with a learning disability need to live independently of their parents. I would be grateful if the Minister could tell me whether the department has, or is considering, carrying out that vital research.

My conclusion is very simple. I invite the Government to use the months before the publication of the Green Paper to commission the necessary research so that when they publish they can ensure that services for people with learning disabilities will be adequately resourced in future. The Government have set themselves the aim of achieving equality for disabled people by 2025; if they are truly committed to tackling the complex and sensitive issues that I have outlined today in the forthcoming Green Paper, it has the potential to be a vital tool in the achievement of the 2025 aim. I look forward to hearing the thoughts and comments on these issues from other noble Lords and, in addition to these speeches, eagerly anticipate the Minister’s reply to this discussion.

2.10 pm

Baroness Wilkins:First, I congratulate the noble Lord, Lord Rix, on initiating this timely debate, focusing attention on the needs of one of the most significant groups in adult social care. I fear that I shall repeat many of the points that he has made but, such is the importance of this debate, I have no doubt that many

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of us will do so. To date, as he said, the debate surrounding the forthcoming Green Paper has been focused almost solely on the funding of long-term care for elderly people. The value of this debate is in pointing out how some of the potential solutions voiced in that area will not meet the needs of adults with learning disabilities.

As the noble Lord pointed out, social care packages for people with learning difficulties are for life, not just old age. While elderly people may be able to contribute to the cost of their social care, it is unlikely that people with learning difficulties will be able to gain the resources to do so. Moreover, the social care packages for people with learning difficulties accommodate much more than just personal care. They need to involve multi-disciplinary teams covering most aspects of that person's life, including housing, domiciliary support, employment, further education, health and leisure activities.

First, I congratulate the Government on their decision to publish a Green Paper on adult social care, which has been warmly welcomed. It is extremely heartening that adult social care is at last gaining prominence on the political agenda. The Government strategy unit's report Improvingthe Life Chances of Disabled People was widely applauded, with its target date to achieve equality for disabled people by 2025. However, if that is to be realised, this Green Paper must address the sensitive and complex needs of people with learning disabilities. It needs to grapple with two stark facts: first, the extent of need which is not currently met and, secondly, the future growth in demand that will result from social trends and demographic changes.

Mencap's report, Breaking Point, put in sharp relief the significant amount of unmet need that currently exists, especially relating to respite care. It found that seven of out of 10 families have never been offered a choice of short-break services and six out of 10 do not get a short break that fully meets their needs. One in three families had experienced a cut in their short-break services last year and six out of 10 family carers who are in poor physical health say that it is because of the amount of care they provide.

As this shows, local authorities are struggling to meet even current need. The Local Government Association has found that in 2005-06 three-quarters of councils experienced significant cost pressures for their learning disability services. As a result, local authorities have tightened their eligibility criteria for care services to a shocking degree. According to the state of the nation report from the Commission for Social Care Inspection, by the end of the current financial year 73 per cent of local councils will support people with learning disabilities only when they have substantial or critical needs.

What does this mean for all those people with learning disabilities who have very real needs that are not so severe? It means that they will live poverty-stricken lives of isolation and restriction, in which they are given no chance to fulfil their potential in employment, training or any meaningful social activity. They have no hope of getting even a small amount of support to live the fulfilling lives which admirable government policies have spelled out for them.



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The gap between the vision of government policy and reality is stark. While central government may be committed to establishing a support organisation of disabled people in every social service authority, those organisations are the first to be cut when council funding is short. Currently, Liverpool People First, in common with many other such organisations, is in danger of losing all its core funding. Core funding is the essential element that enables these organisations to survive, yet trusts and funding organisations are loath to fund them. As People First points out, local councils’ duty to consult disabled people is severely impaired if local organisations of disabled people do not exist. As a result, local councils’ commissioning of services to meet need is bound to be faulty and inadequate. People First calls on the Government to set a baseline for funding those local disabled people’s organisations that councils are unable to fall below without financial penalty.

As the Learning Disability Coalition points out, the current lack of funding for adult services lies at the heart of the widespread human rights abuse that was detailed in the Joint Committee on Human Rights report A Life Like Any Other, which was published earlier this month. The report found that the human rights of people with learning disabilities were being violated by public authorities, local councils and NHS trusts in an alarming number of areas and concluded that:

If that is the current picture, what is the prospect for the future? There are a number of demographic changes and social trends that mean that the pressure on services will only get worse unless they are properly addressed by the Green Paper. For one thing, improvements in neo-natal care have resulted in an increasing number of babies surviving with profound and multiple learning disabilities. There is the rise in single-parent households and the consequent pressure, mostly on mothers, which can lead them to breaking point. The tightening of local authority eligibility criteria means that many more people with learning disabilities are forced to stay at home as day activities are cut, which increases the pressure on families. Moreover medical improvements mean that people with learning disabilities are living longer, but that means that they are outliving the ability of their families to help care for them. It is estimated that 60 per cent of those with a severe or profound learning disability in England live with a family carer, so provision needs to be made for the time when that family carer is too old or frail to continue. Yet Mencap’s report The Housing Time Bomb found that only two in four local authorities was even aware of the number of people this affected and only one in four had planned alternative housing for people with learning disabilities who were living with parents aged over 70. The Learning Disability Coalition is keen to hear from the Government how they will use the Green Paper to ensure that there will be sufficient funding to provide adequate support for people with learning disabilities when they leave their family home.



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It is this lack of awareness of the extent of need and the conflicting predictions by social care statisticians of future demand that the Learning Disability Coalition calls on the Government to address urgently. Can the Minister assure me that an up-to-date assessment of the future demand for social care for people with learning disabilities will be carried out before the Green Paper is published? Unless the provisions proposed in the forthcoming Green Paper are based on an accurate forecast, it has no hope of closing the yawning gap between the Government's admirable policies for people with learning disabilities and the reality of their needs.

2.19 pm

Viscount Tenby: I am grateful to my noble friend Lord Rix for raising this important subject in a Question for Short Debate, even though he has skilfully and clinically dispatched some of my birds. On quoting his phrase, “the usual suspects being here”, I can honestly claim to be not guilty on that score, strangely enough.

However, I must declare an interest in these matters, as chairman of a small residential home for women with physical and learning disabilities in Hampshire and as the honourable vice-president of MCCH, an organisation which provides services for those with mental illness, learning disability and autism in London and the south-east.

The debate is timely because earlier I had the honour of hosting a launch in this House for the Mental Health Helplines Partnership, a much-needed and exciting initiative by the Department of Health, NHS Direct and a media company.

It is entirely right that, ahead of publication of the Green Paper, we should be singling out one critical aspect of adult social care—the needs of those with a learning disability. These needs are inevitably more complex and diverse than those in other categories of social care, acute though they may be; that includes issues such as housing, employment, further education, home support, health, life enhancement—I could go on with such a list.

I believe that the strain on funding, and therefore on services, has never been greater, at least in my time, which is quite long. Whether it is the threat to day services and what they are able to offer clients, or to respite care facilities, the danger of cuts is evident on every side.

The critical factor is surely the evident dysfunction which exists between the entirely understandable and laudable aims of the various agencies in this field and the financial resources which are likely to be available for these purposes. You could argue that this is—indeed it is—an age-old problem, but I believe that it has never been so acute and as apparent as it is now.

Speaking in general terms and non-technically, I have become increasingly puzzled by the rationale which allows two systems to run in parallel—care provided by the NHS and care provided through the social services departments of local authorities. Perhaps a short personal example will illustrate the point. The home with which I am associated is in a serviceable building, is quite modern and is capable of accommodating 20 clients. On national criteria, however,

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that is 10 too many. So, until we rebuild, we will get no further referrals. Without these our income drops until ultimately we implode. Contrast that with the recent case—admittedly exceptional—of Orchard Hill in Sutton, run by the NHS with, so far as I can recall, over 100 residents and the subject of a damning report 18 months ago. Are they down to 10 yet—I wonder? The phrase “level playing fields” comes to mind.

There has been much speculation about the transfer of learning disability from the NHS to local authorities. When is that going to take place? Will wholly adequate resources be made available to fund the transfer so that those affected will not be disadvantaged in any way? Furthermore, there is a general move away from the commissioning of block contracts to spot purchasing. Will provider organisations be allowed the time to make new arrangements? Will there be guidance in the Green Paper on how commissioners can move from one system to the other without serious disruption? We know how common a disease serious disruption has been in this country in recent years.

When local authority budgets are under severe strain—18 months ago it was estimated that three-quarters were in the red—and in view of the parlous financial situation for the foreseeable future, it will be essential that the Green Paper deals with today’s realities, among which are, as we have heard, carers getting older and being unable to cope. I do not apologise for repeating that 60 per cent of those with learning disabilities live at home. People with learning disabilities are living longer. Last but not least are the alarming findings of the report from the Joint Committee on Human Rights, which states that, for many adults with a learning difficulty,

I echo calls for the Government to undertake a thorough evaluation before the appearance of the Green Paper of the likely demands on special care from those with learning difficulties—that is essential. The heart of this and previous Governments has been in the right place in valuing people policies. No one doubts that for a moment—certainly not this speaker. But, since the demand for resources to back these policies up has never been greater, we are rapidly approaching a last-chance saloon in providing a satisfactory framework for the needs of our most disadvantaged citizens. If the forthcoming Green Paper does not meet these concerns head on and offer practical—I stress that—solutions, a great opportunity will have been lost. I am confident that the Minister will have regard to those anxieties when she replies.

2.26 pm

Lord Addington: When the noble Lord, Lord Rix, talked about the usual suspects, I could not but help feeling guilty as charged. This is an interesting debate not because anything new has come up, but because the Question has been asked as the policy paper is being commissioned. We are starting to co-ordinate a response to government, because, as has been said, they seem to be making the right noises and commitments. But the question is how parts of government tie together.



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That we should get bits of government to co-ordinate is one of my usual cries. We should take it as read that Chinese walls exist in Whitehall, but how do many of the problems that have been spoken about today—for instance, the fact that social care needs are not being met—impinge on other government policies? The noble Baroness, Lady Pitkeathley, should be here to talk about carers, as they probably underpin the whole approach. If carers are let down and they ultimately fail and say, “We cannot cope any more”, one’s entire strategy is torn apart. Those with mild and moderate learning disabilities will suddenly have acute problems, because local provision for those acute problems will suddenly disintegrate as a result of the maths not balancing out. The problems will get worse without the carers and the support workers at home who are part of the demographic process which the Green Paper addresses. To make the thrust of the Green Paper work, one must have a strategy that addresses what happens to those groups; otherwise, everything will break down.


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