Social Care Reform (Disabled People)

Anne McGuire Excerpts

Thursday 11th July 2013 Westminster Hall

[Mrs Anne McGuire (Stirling) (Lab)]

It is a genuine pleasure to serve under your chairmanship this afternoon, Ms Clark. I also want to congratulate the hon. Member for Bradford East (Mr Ward) and the hon. Member for South Derbyshire (Heather Wheeler) on promoting this afternoon’s debate. Protocol would not allow me to join them in sponsoring the debate, but I am delighted to be able to participate by making a short contribution.

For the record, I also want to identify colleagues from both Houses of Parliament who took part in what was a groundbreaking inquiry in terms of our Parliament. It was cross-party and cross-House, so I want to recognise the contributions of my right hon. Friend the Member for Coatbridge, Chryston and Bellshill (Mr Clarke), Baroness Eaton of Cottingley, the hon. Member for Meon Valley (George Hollingbery), Baron Low of Dalston, the hon. Member for Truro and Falmouth (Sarah Newton), Baron Tope of Sutton, the hon. Member for Broxbourne (Mr Walker), and the hon. Member for Bradford East, who gave up their time to participate. I also want to thank the all-party parliamentary local government group, under the admirable chairmanship of the hon. Member for South Derbyshire, for joining with the all-party parliamentary disability group in promoting the inquiry.

It is also worth nothing that a distinguished group of people presented evidence to us, both as individuals—people who came from a variety of backgrounds—and as organisations, including the Joseph Rowntree Foundation, Sense, the Royal National Institute of Blind People, the NHS Confederation, Inclusion London, Mencap, Mind, the National Autistic Society, and the president of the Association of Directors of Social Work. I hope that the Minister and my hon. Friend the Member for Leicester West (Liz Kendall), the Opposition spokesperson, will recognise that the evidence brought together a significant spectrum of expertise from organisations, but more importantly, that it brought to the inquiry the particular experiences of disabled people themselves. It was not only about talking to the organisations that are out there, either representing or delivering services for disabled people; it was also about listening to disabled people. To echo the comments made by the hon. Member for South Derbyshire, I would like to thank Scope most sincerely, not only for servicing the inquiry, but for going beyond the bounds of what was expected to ensure that it happened—and happened professionally—and that our publication is both professional and challenging. I want to place that on record.

Disability can happen to anyone at any time. We could have an undiagnosed condition, a car accident, or we could develop a progressive illness. Last week, I attended a reception in the House of Lords for the management of bowel problems. I met a young man who became disabled in his early 20s when a rugby scrum collapsed on him. He never thought, in his wildest dreams, that he would be disabled in his 20s. He loved and played rugby, and one day, an accident happened. I hope that that would be the context in which we can discuss some of the issues that both my colleagues have identified today, because my benchmark for social care is what we would want to happen if it were us. If we start from that premise, we can build a picture of what we think should be the exemplar in terms of social care.

I want to identify why the inquiry took place, and why now. There is a momentum with the Care Bill, with both political parties—perhaps, in this company, I should say three political parties—coming together to recognise the importance of social care. As the hon. Members for Bradford East and for South Derbyshire highlighted, a third of those who rely on social care are, in fact, working-age adults. Sometimes, there is a great frustration among the disability community that working-age adults are not mentioned. We talk about care of older people—indeed, sometimes we use care of “the elderly”, which I think is somewhat disparaging, as we are talking about “older people”. That is only my particular pedantry, I suppose. However, working-age adults sometimes get forgotten, and I certainly welcome the focus that we are giving those younger people today.

As both my colleagues have identified, care cannot only be about basic survival. There is more to life than getting up, eating and drinking, getting into your pyjamas and then going to bed. Frankly, although the Minister mentioned Torbay, that, sadly, is exactly what social care means for many people around the country. For disabled people who want to live fulfilling lives, care is a facilitator for independent living, fairness and respect. It is an enabler to a social and family life and, thankfully, for an increasing number of disabled people, to participating in their own way in the wider life of their community through employment.

Frankly, social care for working-age adults cannot only be about fitting them into a pre-ordained system, nor can it be about a template that is pulled down, and then someone’s name is slotted into it. It is about ensuring that the individual disabled person has real independence, choice and control. Sometimes we talk glibly about independence, choice and control, without thinking about exactly what they mean; they can be different things for different people. There is no point in having someone come in to help a person dress at 11 o’ clock, when they need to get to their work at 10 o’clock. What is the point of that? That does not allow them to live a fulfilling life, and there is little dignity and respect in getting that person into their pyjamas at 6 o’clock when they might want to go out to the cinema, to visit their friends, or, indeed, to have their friends round to visit. Let us just imagine what that must be like. Their family, friends or neighbours are there, and the person is sitting there in their jimjams. That is not what we should mean by social care, but sadly it is what is happening in many parts of the country.

In addition, as the hon. Member for South Derbyshire highlighted, social care should not just be another arm of the emergency services. It should not be a response to a crisis. That is where some of the difficulties in terms of preventive measures come in, but I want to make two or three points to echo some of the recommendations in the report.

First, I think that the current Government, like previous Governments, believe in principle in the right to independent living. We believe, I hope, as a Parliament, in breaking down barriers for disabled people and breaking down some of the Government silos that create those barriers. Disabled people do not live their lives according to the Department for Transport, the Department of Health, the Department for Work and Pensions—we can add on whichever number of Departments we want. That is not how people live their lives and it certainly is not how disabled people live their lives, so it is important that we do not just talk about independent living, but look at how it can be delivered.

Both my colleagues identified the important issue of the portability of care, and I cannot emphasise enough how important that is to disabled adults of working age. I ask the Minister to think about this issue. Let us consider the case of a disabled person in the borough of Lambeth who has to move to Westminster but finds that they cannot take their care package—their support—with them. That is echoed across the country. If it is difficult within one city, just think how much more difficult it is if someone happens to live in Carlisle and wants to go and live in Bradford. Let us just think of the challenges that that poses for an individual disabled adult.

However, it is not just individual disabled adults who are affected. Let us consider the case of people who are the parents of a disabled child. The mum or dad gets a new job and moves from Bradford down to Birmingham. The disabled child has some sort of support mechanism. This starts in childhood and can develop into adulthood. I appreciate that we are talking specifically about working-age adults, but I think that we must recognise that the picture is even bigger than the focus that we have today. In many cases, this is an issue from the cradle to the grave.

[Norman Lamb]

I agree with the case that the right hon. Lady is making, but I want to ask her this. Presumably she is pleased that the Care Bill introduces the capacity to move from one part of the country to another without the care package collapsing and that it stays in place until the person has been reassessed in their new area. It may be that someone’s needs change if they are closer to a loved one, their home is different or whatever, but the care package stays in place until the reassessment happens.

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[Mrs McGuire]

Of course I welcome that. I think that the big challenge for the Minister, the Government and, indeed, any future Government that I hope will be there within 18 months or so is how that is delivered—how we break down those barriers. Although I can obviously speak about the silos within the UK Government, at Whitehall level, we must be realistic and recognise that there are tensions even between one local authority and another. The issue is how that policy is delivered, but of course I give the Minister due recognition for that comment.

I want to emphasise the issue of the eligibility threshold. I heard what the Minister said about that, but if the threshold is at the “substantial” level, many people will not qualify. I accept what he said—no one will lose out on what they have now, so if someone gets it at the “moderate” level, which I understand is the situation in Bradford, they will not lose out. But in the event that the provision is limited to those whose needs are at the “substantial” level, many people will still require that additional element of support, which would allow them to live independent lives.

[Mr Ward]

The point was made by the Minister that no one will lose out. As I pointed out in my speech, 90,000 people have already lost out. They may be being told that they will not lose any more, but they have nothing more to lose, because they have already lost it. That is the big concern. We already have this level in 84% of authorities, which means that people have lost the provision; it has gone from them for ever.

[Mrs McGuire]

I hope that the Minister has heard his hon. Friend’s comments.

The report clearly identifies the issue of preventive care. That issue has bedevilled the health service, probably ever since it was established. People think of the health service and the social care service as providing solutions at the point at which they need them, as opposed to being innovative and looking at how some of those situations can be prevented from arising. As the hon. Member for South Derbyshire said, there is a saving in the long term if we get that right.

It is perfectly true that many disabled people who fall out of the system have to re-enter it and probably at a higher level of support and therefore expense. Of course, the crucial element in all this is that closer integration of budgets is needed to ensure that “health and social care” actually means health and social care. I do not think that any of us can run away from the issue of financial austerity. It is about getting the best value for money and recognising the funding gap, but I hope that we can reach agreement across the political spectrum about how we deliver this. I would hope that hon. Members in this Chamber would share many of the frustrations that certainly we had in the last Parliament about the fact that we could not reach cross-party consensus on funding.

I want to address a couple of remarks to the Minister. One has to do with a gap in the Care Bill. There is no mention of the role of the DWP in any of this, yet the DWP holds the purse strings, in some respects, for many individual disabled people. Some of us were quite surprised in the debate yesterday in the main Chamber when we discovered that the Minister leading the debate on behalf of the Government, the Minister of State, Department for Work and Pensions, the hon. Member for Fareham (Mr Hoban), said that he had not read the Care Bill. That was quite a shock. We do not know whether his officials had read it, but there is a strong element that I think must be taken into account. I am referring to the role that the DWP can play in this. I would be interested if this Minister had any comments on what he believes will be the impact of the closure of the independent living fund in terms of the wider area of health and social care.

I want to finish my speech by offering very special thanks to Baroness Campbell—Jane Campbell. One of the idiosyncrasies of this place is that although we can share agendas with our colleagues in the House of Lords, we cannot share with them, even in the slightly less formal environment of Westminster Hall, some of the discussion and debates. Baroness Campbell was a pioneer of independent living and a driving force behind this agenda for many years. She has her own piece of legislation, a private Member’s Bill, and I understand that much of what was in that private Member’s Bill has probably been taken on board by the Government. Individuals such as Baroness Campbell, who depended themselves on the health and social care system, were not prepared to let that system drive them down. She has been a powerful advocate for this agenda over many years. I wanted to pay a particular and special tribute to her this afternoon as we have the opportunity to discuss the report.

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[Norman Lamb]

Well, it is. To bring health care and social care together structurally would be a massive re-organisation, and there is no way of avoiding that. The smart way is to focus on the care that an individual receives. The issue is not just about bringing health and social care together and integrating those two systems but about the health service itself and the fact that, institutionally, we have separated mental health from physical health and primary care from secondary care, which is crazy. The whole thing is fragmented, but we should shape services around the needs of patients. The Government’s approach, based on the duties to integrate in the Health and Social Care Act, is the smart, fast way of achieving much more joined-up care for the patient, whether individuals are elderly or of working age. I want to make some progress with my speech.

The Government are committed to improving the lives of disabled people and to supporting them in their independent lives. In very difficult financial circumstances, we have done much to achieve that through the disability strategy, welfare reform—it is incredibly controversial, but any Government would have to pay attention to the extraordinary growth in welfare spending—and a whole raft of condition-specific initiatives.

One outstanding issue still needs to be addressed—social care reform. The importance of care and support for disabled adults cannot be understated: it is the enabler of independent living. We hear much about the ageing population as the driver for care reform, but a third of all health and care users are working-age disabled people, so it is vital that the social care reforms address their needs. The fact that my hon. Friend the Member for Bradford East and his colleagues have secured this debate is valuable because it ensures that we focus on the needs of working-age disabled people. I repeat that there is a risk of their being forgotten, which must not happen.

Earlier this year, I read with interest the “Promoting Independence, Preventing Crisis” report into making social care reform work for disabled adults. It was a joint inquiry by the all-party groups on local government and on disability. I congratulate them on an important piece of work, and I will attempt to address some of the points raised in a moment. I first want to talk about some of the things we have done.

We know that disabled people face a number of challenges. They are far less likely to be in employment than non-disabled people. In fact, shockingly, only 46% of disabled people are in employment compared with 76% of their non-disabled counterparts. Some 19% of individuals living in a family with a disabled member are in income poverty, although I am pleased to say that that has been falling over time. Progress is being made, but much more needs to be done.

The first thing to say about all the Government’s reforms is that we are committed to the UN convention on the rights of disabled people, which includes the right of disabled people to independent living. The Department of Health has been working closely with the Office for Disability Issues on the new cross-Government disability strategy, “Fulfilling Potential”, which was published last September. It is about making the UN convention a living reality for disabled people in Britain. It describes the rights that disabled people—just like anyone else—have in all areas of life, and the duty on Government to ensure that those rights are met.

The shadow Minister made a point about co-ordination with the DWP. There is scope for much more joined-up working at a local level to bring disparate public services together and to achieve far more bang for our buck than we presently manage.

[Mrs McGuire]

Will the Minister give way?

[Norman Lamb]

I am conscious of time, but I will briefly give way.

[Mrs McGuire]

I do not wish to embarrass them, but I suggest that both the Minister and his officials look at the disability strategy report based on the “Fulfilling Potential” report that he mentioned. That update was published last week. I think the jury is out on what it says, but in the interests of joined-up government, he should have the most up-to-date picture.

[Norman Lamb]

I am grateful to the right hon. Lady for that intervention. What remarkable timing she shows. On 2 July, the follow-up document, “Fulfilling potential: making it happen” was published, which sets out the indicators that will show where we are making progress and where more work needs to be done.

In my Department, we have been working to ensure that we can hold the new health system to account for the quality of services and outcomes that they provide to disabled people. The NHS outcomes framework includes a number of measures that relate specifically to disability, including, critically from my point of view, mental health, which is an area that is sometimes forgotten. Talking about an outcomes framework sounds like horrible jargon, but it is actually about focusing on results for people—the impact on people of what we spend. If we can measure that and then measure the changes that happen over time, we can focus the whole system’s attention on the need to achieve outcomes for people rather than on process. Essentially, we will expect to see a reduction in premature death among people with a learning disability and people with serious mental illness. It is a scandal in this day and age that such people die so much younger than others. We will also expect to see an enhanced quality of life for people with mental illness and an improvement in their experience of health care.

This matter is not just about the NHS. We will also be holding to account the adult care and support system through the adult social care outcomes framework for ensuring that

“people are able to find employment when they want, maintain a family and social life and contribute to community life, and avoid loneliness or isolation”.

We will be measuring that through the proportion of adults with a learning disability who are in contact with secondary mental health services, who are in paid employment and who live in their own home or with their family.

We have responded robustly to the challenges posed by the really dreadful events at Winterbourne View hospital and to the way in which people with learning disabilities, autism and behaviours described as challenging are viewed and treated. All too often, society has treated them as second-class citizens. I take a simple view that people with learning disabilities have exactly the same rights as anyone else, and we have to ensure that the whole system respects that basic position. By April 2014, every area will have a joint plan to ensure high-quality care and support services for this group of people in line with best practice. By June next year, everyone inappropriately in hospital will have moved to community-based support.

We are reviewing the national autism strategy to assess how it is addressing the barriers that people with autism face, and how care and support services are responding to their needs. However, that is not something that the care and support system can do on its own. As a Government, we are also aiming to make the benefit system fairer, more responsive and more affordable to help reduce poverty, worklessness and welfare dependency, and to reduce levels of fraud and error. For many, that will include support to work, which is the best route out of poverty and is very often beneficial for those with long-term health conditions. It is worth reiterating that severely disabled people who need support will always get it, and we will provide unequivocal support for those who cannot work.

I mentioned care reform. Many people have told us that today’s care and support system often fails to live up to the expectations of those who rely on it. Although many have good experiences, the system can be confusing, massively disempowering, paternalistic and not flexible enough to fit around their lives.

Our White Paper, “Caring for our future”, which was published last year set out a vision for a reformed care and support system. Yes, it was based on the Law Commission report, but it was implemented, I am proud to say, by this coalition Government. We need a modern system that promotes people’s well-being by enabling them to prevent and postpone the need for care and support, and puts them in control of their lives to pursue opportunities, including education and employment, to realise their potential.

The Care Bill, which we introduced in Parliament in May, is a crucial step in delivering that vision. It represents the most comprehensive reform of social care legislation in more than 60 years, creating for the first time a single, modern statute for adult care and support. The existing law that underpins care and support is outdated and confusing. It is rooted in the post-war period and must be overhauled, as the Law Commission concluded after its three-year review. Our new statute will be clearer, fairer, and will empower people to take control over their care and support. It has been done in the most collaborative way, with pre-legislative scrutiny and widespread consultation with the sector and the wider community.

The current legal framework is narrow and paternalistic; it is built around the idea of providing state-defined services, rather than of meeting and responding to the needs and goals of individuals. The other day, my hon. Friend the Member for Bradford East talked very movingly about the brilliant community work on dementia care that is under way in Bradford. That is where we see this collaboration between ordinary people who are good citizens and who care for one another and the supportive role that the state always has to play to back that up. The Care Bill will help to shift the focus of care and support from paternalism to a much more personal approach. It will place personal budgets on a legislative footing for the first time. I agree with the shadow Minister about the importance of personal budgets being real; they must empower people and not mask a cut in support or provision.

We want to extend the greater roll-out of personal budgets to give people who are assessed as needing care and support more choice and control over how their care is provided. Where personalisation has taken root it works—people get better results and it is popular with users and carers. That is particularly true for working-age adults; take-up is relatively high compared with that among older people. This great reform came about through working-age disabled people demanding that they have more control over their lives, and local government responding to them.

The current law fails to reflect the importance of supporting people in caring roles. The Bill, for the first time, puts carers on the same legal footing as those for whom they care, with expanded rights to assessment and new rights to support.

The Care Bill also implements historic reforms to the way in which the care system is funded, by introducing a cap on the care costs that people incur. Of course, as I said in an intervention on the shadow Minister, people can choose to spend more than that if they wish, but if we were to do what I think she was implying it would mean giving enormous financial support to wealthier people, which cannot be justified in times of real financial constraints.

The current care and support system offers little financial protection for the cost of care. As the Commission on the Funding of Care and Support said, because care needs are unpredictable, individuals and families are unable to know what care costs they might face in the future. We recognise that some working-age adults may face having to pay for care earlier than most elderly people do, so we have therefore said in our funding reform proposals that people who need care before they reach retirement age will pay less. In addition, the changes we are proposing will mean that people who are assessed as having care needs before they turn 18 will have their cap set at zero. We will be consulting on those changes very shortly.

We have made it clear from the consultation and publication of the White Paper through to the publication of the Care Bill that the same principles apply to all who need care and support. That applies equally to an adult with a physical disability, someone with a learning disability, an adult with mental health issues or an elderly person needing care. I know that my hon. Friend the Member for Bradford East is particularly concerned about eligibility criteria. We have published draft regulations setting out national eligibility criteria for discussion. They are set at a level that will allow local authorities to maintain the same level of services for service users when they move from the current framework.

Let me end by saying that I would prefer to have a more sophisticated system. Work is under way on developing that. I invite Scope to participate in that and work with the Government to achieve a much more rational system in which we can intervene earlier, provide some support and help to build capacity and resilience so that people get help when they need it rather than when they reach a crisis.