Clause 1 - Promoting individual well-being

Care Bill [Lords] – in a Public Bill Committee am 2:00 pm ar 9 Ionawr 2014.

Danfonwch hysbysiad imi am ddadleuon fel hyn

Photo of Liz Kendall Liz Kendall Shadow Minister (Health) (Care and Older People) 2:00, 9 Ionawr 2014

I beg to move amendment 57, in clause 1, page 1, line 6, at end insert ‘and independent living’.

Photo of Andrew Rosindell Andrew Rosindell Ceidwadwyr, Romford

With this it will be convenient to discuss the following:

Amendment 58, in clause 1, page 1, line 6, at end insert—

‘(a) any duties relating to independent living should promote the wider definition of independent living as expressed in article 19 of the UN Convention on the Rights of Persons with Disabilities.’.

Amendment 59, in clause 1, page 1, line 7, after first ‘Well-being’, insert ‘and independent living’.

Amendment 60, in clause 1, page 1, line 12, after ‘control’, insert ‘and choice’.

Amendment 61, in clause 1, page 1, line 15, before ‘participation’, insert

‘full and equal access to and’.

Amendment 62, in clause 1, page 1, line 15, at end insert

‘cultural, public and community life’.

Amendment 63, in clause 1, page 1, line 18, after ‘suitability’, insert ‘and choice’.

Amendment 64, in clause 1, page 2, line 1, at end insert

‘and their participation and inclusion as equal and valued citizens’.

Amendment 66, in clause 2, page 2, line 37, at end insert

‘whether or not that adult meets the local authority eligibility criteria set out in Clause 13.’.

Photo of Liz Kendall Liz Kendall Shadow Minister (Health) (Care and Older People)

It is a pleasure to serve under your chairmanship, Mr Rosindell. I want to put on the record my gratitude to the Chair who was here this morning. This is only my second Bill Committee, and he gave a brilliantly clear and simple summary of how the Committee process works.

I welcome the people here who are not Members of Parliament or staff. I do not know who they are, but it is nice to see other people in the room. I thank in advance all hon. Members on the Committee, the officials, the Clerks of the House of Commons and the departmental  staff for their hard work on the Bill. We are all grateful because it will make a difference to our constituents’ lives.

I echo the comments this morning of my hon. Friend the Member for Copeland and the care Minister. We are determined to engage in a constructive debate on this critical issue, which affects families and the country as a whole. People—including those with disabilities—are living for longer, and we will have to get to grips with the issue as a country. The Bill is an important step forward, and it builds on work done by the previous Government. We want to make it even better through the debate.

I am pleased to address my first comments to this set of amendments, which relates to the rights of disabled people to live independently, to have genuine choice over their lives and to participate fully in all aspects of public and community life. The amendments will put that at the heart of the Bill. Much of the debate about social care is understandably focused on older people, but a third of people who receive social care are working age disabled adults. In many councils more than half the adult social care budget is spent on disabled people. In my own fantastic city of Leicester, 40% of council care users are disabled adults, but their services account for 60% of the adult social care budget. Many councils say that the money spent on adults with disabilities is increasing year on year, a fact that we do not recognise often enough. Too often, adults with disabilities are overlooked in the public debate and in public policy on social care.

The Bill is an important opportunity to ensure that our legislation fully addresses the needs, aspirations and rights of disabled people. Disability organisations have rightly welcomed the new duties that the Bill will put on local authorities to promote well-being and prevention. However, many organisations, such as Inclusion London, Scope and Mencap, have argued that a duty to promote independent living is also essential. That is not a minor or technical point, but a point of principle. Independent living is crucial to ensuring that disabled people have the same rights, choices and chances as any other citizen in this country. Independent living is essential to getting a good education, finding a job, building a career and taking part in community and public life. It is about ensuring that people can live in their own home with whoever they choose to live with and have the opportunity to have a family life. It is about ensuring that they are able to get out and about, meet up with friends and participate in the cultural life of the community and the country. In other words, independent living for me, and more importantly for disabled people and the organisations that work with and represent them, is about being able to participate in, contribute to and be included in society, as the rest of us usually take for granted.

Disability organisations say that disabled people’s rights to independent living are being undermined by the Government’s policies in social care and the welfare system. The Government’s decision to reduce local council budgets by a third, the biggest reduction in any part of government, is having a real effect on services that are essential to helping with the basics of daily life, such as getting up, washed, dressed and fed. We do that every day, which is essential to getting on with the rest of our lives, but for disabled people—

Photo of Grahame Morris Grahame Morris Llafur, Easington

That is an important point. I have been reflecting on the statistics about the percentage of local authority budgets going to social care and on the impact of Government policy. I am not sure whether the Under-Secretary of State for Health, the hon. Member for Central Suffolk and North Ipswich, was on the visit to Sweden by the Select Committee on Health, but the hon. Member for Totnes was. I recall that, in our discussions with Swedish parliamentarians, who have a sort of Standing Committee on Health, we were told that if any responsibilities were placed on local government, it is a legal requirement for the necessary resources to be made available for the councils to carry out those services and delegate the functions.

Photo of Liz Kendall Liz Kendall Shadow Minister (Health) (Care and Older People)

My hon. Friend makes an important point about the needs of adults with disabilities and about the importance of having a right to the basics of daily life, which are essential. The recent joint inquiry by the all-party groups on local government and on disability showed the real problems with the services in the current system: four in 10 disabled adults are now failing to have their basic social care needs met; and nearly half of all disabled adults say that services are not supporting them to get out and about in their local community. The same erosion of independence and opportunities is happening in the social security system through the closure of the independent living fund; problems with the Work programme; how the personal independent payment is being implemented; and the bad bedroom tax.

The Government have not produced a cumulative impact assessment of how their policies are affecting disabled people, as recommended by the Joint Committee on Human Rights and disability organisations. The Government say that that would be too difficult, but the Demos report for Scope has shown that it is not; the calculation was that by 2018 disabled people will have lost more than £28 billion in financial support, affecting up to 3.7 million people, with a devastating impact on their lives.

We urgently need a new approach on all the policies affecting disabled people. We have proposed fundamental reform of health and social care. We have already discussed our proposals for whole-person care, which would see the full integration of health and social care and bring all the resources of our care system together to get the best outcomes for users and the best value for money for taxpayers. We are also exploring lessons that can be learned from Australia’s model of universal disability insurance, which looks to give people with permanent and significant disabilities more power, choice and control over their services and support, so that they can achieve what they want for their lives.

That is slightly outside the scope of today’s debate, but it is important to see the Bill in the wider context of what is happening to disabled people, because what happens on care fundamentally affects whether disabled people can have opportunities to learn, get skills, train or get a job, as well as being able to have a family life and to see their friends. That is exactly what our amendments 57 to 64 seek to do: put a bolder and more empowering framework, including the principles of independent living, choice and control, and the ability to participate fully in the public, community and cultural life of this country, absolutely at the heart of the Bill.  That is what local councils and others such as the NHS should have a duty to be thinking about: the rights, choices and abilities of adults with disabilities, so that they can have a full and fulfilling life. It is a matter of absolute principle.

Photo of Bill Esterson Bill Esterson Llafur, Sefton Central

My hon. Friend has talked about councils’ responsibilities and what they will be able to do in future. In its comments on the Bill’s proposals, Sefton council was clear that if current plans for budgets continue, in its opinion it would make the current delivery of care and support unviable, with all the consequences and difficulties for disabled people to live full and independent lives. I hope she agrees that that sums up the potential threat and the real problems that people will face unless the issues are addressed.

Photo of Liz Kendall Liz Kendall Shadow Minister (Health) (Care and Older People)

What Sefton council is saying is mirrored by the views of councils, services and constituents throughout the country. The Bill is about the basics of daily living; that is what we are talking about. We cannot have a system that promotes well-being, which is about preventing people from having the worst things happen to them and about supporting carers and families who love each other, if the basic services are being reduced.

Of course there are budgetary issues, and we will come on to that when we debate clause 13 on eligibility criteria, but there is a principle of independent living. In our amendments, we say that the criteria should be directly related to the definition of independent living as expressed in the UN convention on the rights of persons with disabilities, which the previous Labour Government ratified in July 2009. It is a very important framework to do with disabled people having the right to choose where they live and the right to access services and personal assistants to enable them to take part in the life of their community—not just to live in their homes, but to get out of their homes and be with their families and friends.

Photo of Jim Shannon Jim Shannon Shadow DUP Spokesperson (Health), Shadow DUP Spokesperson (Transport), Shadow DUP Spokesperson (Human Rights)

Does the hon. Lady also feel that there is a need for a diversity of service providers? I know that that is not the issue at this stage; none the less, to achieve independent living, we need a diversity of service providers.

Photo of Liz Kendall Liz Kendall Shadow Minister (Health) (Care and Older People)

Absolutely. As always, the hon. Member for Strangford has hit the nail on the head. We will come to a specific clause about diversity of provision and an amendment that Opposition Members have tabled. We really need a diversity of providers—public, private, voluntary and not-for-profit mutual—of different sizes. There is increasing evidence that smaller providers provide better quality outcomes, but they are being squeezed out of the system, so different sizes is essential.

Photo of Debbie Abrahams Debbie Abrahams Llafur, Oldham East and Saddleworth

My hon. Friend is making a fantastic speech, bringing together the issues around the reforms in welfare provision and the lack of coherence in what is happening around the Bill. Does she agree that the recent report from the Joint Committee on Human Rights, which describes regressive practice in the UK because of the welfare reforms for disabled people and the manner in  which they have been implemented, is a serious matter? We are trying to redress some of that in the Bill through the amendments.

Photo of Liz Kendall Liz Kendall Shadow Minister (Health) (Care and Older People)

My hon. Friend is right. We can set a different framework here based on the absolute principles of rights to independence and to choices. We need to ensure that disabled people and their families have real choice and control. We need to bring together the budgets for health and social care and some of the welfare, work and education programme budgets so that disabled people can decide for themselves the life that they want to lead and the support that they need.

Photo of Norman Lamb Norman Lamb The Minister of State, Department of Health

I totally agree with the hon. Lady’s point about a diversity of providers. That sort of choice is so important. Does she also agree that that same principle should apply across the health care system, or is it on only the care side of the divide?

Photo of Liz Kendall Liz Kendall Shadow Minister (Health) (Care and Older People) 2:15, 9 Ionawr 2014

As the care Minister knows, I am in favour of giving people absolute choice and control over their services wherever they are. I believe that the purpose of politicians is to give power away. People are best placed to know what services and support they need. They are the best people to know how to prevent problems from happening, because they are the ones who experience the problems of failures later. They are the ones who are best able to join up their services and support, because they do not see their needs through the prism of separate service silos. My constituents are the most vociferous critics of waste and inefficiency when services do not work together, because they see money being spent on waste, which could be better spent on their lives.

I apologise, Chair; I am slightly digressing on to a wider issue. Care and support are essential for people’s full lives. If we want people to be equal citizens, we have to get that right.

Photo of Grahame Morris Grahame Morris Llafur, Easington

Does my hon. Friend agree that, in characterising the care crisis as for the frail elderly, we should not forget that there is another care crisis, involving the young and disabled, which was highlighted in a report by five leading national charities, including Scope, called “The Other Care Crisis”? It is critical that we get it right in relation to the eligibility thresholds, so that they, too, can live full and independent lives.

Photo of Liz Kendall Liz Kendall Shadow Minister (Health) (Care and Older People)

I agree. I would love it if the debates in Committee were more widely known. I know that there are people who read them, but many do not. Perhaps we all have to take a bigger responsibility, particularly in our public comments, always to ensure that we talk about care in the context of the young and of working age adults with disabilities, as well as of older people.

The Prime Minister rededicated himself to supporting the United Nations convention on the rights of persons with disabilities last July at the disability employment conference. He said that although he thought that the UK was in a good position on disability rights, he wanted us to

“go further in changing the perceptions of disability in our society”.

The Bill, and Labour’s amendments, provide the Government with an opportunity to hardwire the Prime Minister’s words into law, which is why I hope the Minister will accept our amendments.

Amendment 66 is fundamentally linked to the points I have been attempting to make. The amendment relates to clause 2, which, as hon. Members know, places a duty on local authorities to provide or arrange for the provision of services that seek to prevent or delay people’s needs for care and support. The clause is absolutely critical. Prevention is the holy grail of health and social care policy; I would argue that it is the holy grail of many other policies, such as education. However, that is incredibly difficult to achieve, as I know from my previous experience. Before I became an MP, I worked at the ambulance service network—really at the emergency critical failing end. Many of the people with whom paramedics work could have stayed at home with up-front prevention and support.

I worked on the issue with the King’s Fund, and in my days working in the Department of Health, on the unfortunately probably forgotten 2006 White Paper, “Our Health, Our Care, Our Say”, which talked about how we get the shift towards prevention.

Providing up-front support rather than last-minute crisis interventions is better for people and for taxpayers. It is always important to get the best value for money, but especially at this time, when we as a country must deal with the deficit and balance the books of our economy. Too much of our health and care system is focused on last-minute interventions, when up-front help and support could help people to stay living in their own homes, or help them to get out to work, train and have opportunities, rather than having them stuck in hospitals or their own homes and not doing what they can do.

I know the care Minister agrees with arguments about prevention. In a speech to a Guardian ageing quarterly event last year, he said that the duty in clause 2 was “potentially a game-changer” and that it

“puts a new emphasis on preventing people from reaching crisis point”.

He said that prevention is

“central to a modern care and support system” and that

“effective prevention is vital if we are to sustain the commitment made to public services and a welfare state by our forebears.”

Good words; excellent.

Photo of Liz Kendall Liz Kendall Shadow Minister (Health) (Care and Older People)

The words are right, but too often the reality is altogether different. I have already said that I believe that disproportionate cuts to local councils are making the preventive agenda harder, not easier, to achieve. Other hon. Members have rightly spoken about the crisis in care that we face. Age UK says the care service has been pushed to the brink of collapse, while Scope says that we are failing to ensure a sustainable funding system for the entire social care system, and that ultimately this is not just bad for people, but a false economy. If elderly or disabled people cannot get the support they need up front, they will end up requiring more expensive hospital services.

Hon. Members will know that delayed discharges from hospital have gone up by a third since the election. Over the past year, they have cost the NHS more than £220 million, which could have paid for more than 5,000 community nurses or a whole year’s worth of home care for 30,000 elderly people. We are spending money in the wrong place and in a way that does not help people. Such spending is also far more expensive, so it is bad for people and a false economy.

Photo of Andrew Griffiths Andrew Griffiths Ceidwadwyr, Burton

The hon. Lady talks a huge amount of sense when she refers to the savings that can be made down the line if we introduce such measures. The big question, of course, is the risk in spending the money now to save that money later. Will she elaborate a little more about how she thinks such things could be paid for now?

Photo of Liz Kendall Liz Kendall Shadow Minister (Health) (Care and Older People)

I think the solution is a single budget. At present we say to hospitals, “Keep people out,” but we pay them to admit people, and rows follow. The council generally does not have the money to put preventive services in the home, but if it does, and if that saves money by preventing people from going into hospital, it is not the council but the hospital that accrues the savings. I see the hon. Member for Totnes in the room. We have all paid homage to Torbay and we have all been to see it. Absolutely at the heart of the issue is a single-budget approach to avoid rows between the various providers.

I also think that we need what we call a year-of-care budget, rather than paying for individual interventions. With such a budget, especially for people with long-term chronic conditions, it would be possible to shift budgets. It is not just about finances. I believe, too—sorry, Mr Rosindell, to digress—that this is about changing cultures to create one team. If a doctor knows who the community nurse is and who the occupational therapists and physios are, they can have confidence in discharging someone because they will know that the person will have a package and team in place around them. These are big and complicated issues that many of us want to see addressed, so I hope we will be able to discuss them further.

Our big worry about the Bill is that we will never get a system that is focused on prevention if the eligibility criteria, which we will discuss under clause 13, are substantial, because that will mean that people will not get help and support from the preventive services. We argue that prevention should apply to everybody, not just those who are already in the system with substantial care needs, and that is what amendment 66 tries to achieve. We are saying that if we reduce all our preventive services and do not provide them unless someone already has substantial needs, we are in a rather difficult position.

Photo of Paul Burstow Paul Burstow Democratiaid Rhyddfrydol, Sutton and Cheam

Does the hon. Lady recall that when I made a point about eligibility on Second Reading, the Minister assured us that clause 2, which is on prevention, stands separately from clause 13—the eligibility clause? In other words, eligibility is not relevant to whether preventive services are available.

Photo of Liz Kendall Liz Kendall Shadow Minister (Health) (Care and Older People)

I do remember that interchange, but I am trying to put the Minister’s words in the Bill. I was about to say that I hope the Minister does not move  post, but I hope he does—after the next general election. We want not just the words of the Minister, passionate though he is about this issue, but for that view to be set out in the Bill.

Photo of Norman Lamb Norman Lamb The Minister of State, Department of Health

It is a pleasure to serve under your chairmanship, Mr Rosindell. While I sympathise with the intention of many of the amendments tabled by the hon. Member for Leicester West, they would not have any practical effect. In some cases, they could even confuse the operation of the well-being principle.

Before I develop my argument, I join the hon. Lady in thanking all the officers serving the Committee, specifically those in the Department of Health. An exceptional team has done the work throughout the process of the Care Bill. I think that the approach on the Bill has been the most collaborative that I have come across, in terms of co-production with the sector out there, and of being willing to address legitimate issues and concerns to amend the Bill, both in its draft form and in the House of Lords. The officers and the civil servants in the Department have done excellent work in getting us to this point.

Amendments 57 to 59 would add independent living to the well-being principle, but they are unnecessary because the concept of independent living is already a core part of that principle. I completely share the hon. Lady’s view of independent living and agree with everything she said, apart from her provocative comments about spending.

Photo of Debbie Abrahams Debbie Abrahams Llafur, Oldham East and Saddleworth

May I quote the Joint Committee on Human Rights? It says:

“We conclude that there is a risk of retrogression of the UK's obligations under Article 19” of the UN convention on the rights of persons with disabilities, which enshrines the right of independent living for disabled people,

“as a result of the cumulative impact of spending cuts and reforms.”

The proposal is an attempt to strengthen the situation so that we can get back to where we need to be on fulfilling our obligation to disabled people.

Photo of Norman Lamb Norman Lamb The Minister of State, Department of Health

I am grateful for that intervention. In response to an intervention by my right hon. Friend the Member for Sutton and Cheam, the shadow Minister made a case that I completely share. She will correct me if I am wrong, but I got the impression that she was talking not about more money in total for the health and care system, but deploying resources much more effectively. What we need to do, as she rightly said, is to make the big shift from what I call repair to prevention.

If I may gently make a point about the previous Government, over the past decade there was substantial investment in the health service, which I supported, but the bulk of it was at the acute end of the spectrum. The system of payment by results, which is in fact payment for activity, incentivised activity in acute hospitals, thus creating more investment at that acute end, rather than focusing resources at the prevention end. The exciting thing about the Bill, together with the better care fund, is that it starts to effect that shift in not only the framework and the focus on integrated care and prevention, but on shifting resources through that fund to achieve  the sort of prevention that I am sure we all agree with. However, the principle of independent living is not one with which I disagree.

The precise term “independent living” is not easy to define. It is often associated, as we heard, with article 19 of the UN convention, as is the case in amendment 58, but it is not actually defined there. We have focused on reflecting in the Bill the outcomes and rights in article 19 of the UN convention that are relevant to care and support, which means the substance of article 19, rather than the phrase “independent living”, which is not actually defined in that article. For instance, clause 1 deals with such things as control, the suitability of living accommodation, contribution to society and, crucially, requiring local authorities to consider each person’s views, wishes and feelings.

We think that this language is clearer and that it focuses on the outcomes that people want to achieve. Interestingly, when the Law Commission considered including the phrase “independent living” in the statute, it concluded that it was too imprecise to be expressed as a statutory principle. The commission stated that the more important issue was that people’s wishes and feelings were respected. We agree with that and have reflected it in the drafting of the clause. This very clear concept of well-being as set out on its own, which was very ably described by my right hon. Friend the Member for Sutton and Cheam when speaking to the previous group, could be an incredibly powerful principle. I hope that it will be applied in future legislation, because it focuses on what we all ought to be thinking about: someone’s happiness and giving people a good life, rather than a service that we deliver to them as a passive recipient. The principle has enormous power as something that is simple and uncomplicated.

I am afraid that amendments 60 to 64 would add nothing to the principles as drafted, and might be harmful by confusing carefully worded principles. I will deal with each in turn. First, I do not consider that the word “choice” adds anything to the concept of individual control over day-to-day life. The shadow Minister looks anxious and concerned, but let me try to reassure her.

Photo of Norman Lamb Norman Lamb The Minister of State, Department of Health

Thank you, Mr Rosindell, for protecting me from such an aggressive challenge from the shadow Minister. I am absolutely not anti-choice. As a Liberal, choice is at the heart of what I believe in, but if one is in control of one’s life and can control one’s day-to-day living, that necessarily involves the concept of being able to choose what one wants to do. Such a concept of control necessarily includes personal choice, so amendment 60 is unnecessary.

Secondly, amendment 61 is unnecessary because providing for “full” access to work, education and training is implicit in the concept of participation in those areas, as well as in the reference to social and economic well-being. The phrase “equal access” would add nothing to existing equalities legislation. The shadow Minister will be familiar with the range of equalities duties directly addressing equal access.

Thirdly, the reference to

“cultural, public and community life” in amendment 62 is already sufficiently encapsulated by the references to social well-being and an individual’s contribution to society elsewhere in clause 1(2), so the amendment is unnecessary. Fourthly, the concept of control over day-to-day life and the suitability of living accommodation naturally also encompass choice of living accommodation, where appropriate, so amendment 63 is unnecessary.

The notions in amendment 64 are already captured by the concepts of social and economic well-being and participation in work, education, training and recreation. The well-being principle has been widely praised as marking a significant step forward for adult care and support in the law. We have listened to stakeholders’ views and made amendments when we have agreed that clarification or addition would be helpful. The amendment not only would serve to confuse the clear, proactive message about what care and support is for, but would not add anything to what the Bill already provides for.

I turn to amendment 66. Clause 2 requires local authorities to provide or arrange services that could prevent, delay or reduce the needs of adults and carers for care and support. For the first time, it creates a clear legal duty on local authorities to ensure the provision of preventive services, and it is incredibly important that we do that. I reassure hon. Members that the prevention duty applies before any person develops a need for care and support, as the clause makes clear. A local authority therefore will ensure the provision of services that contribute towards preventing, reducing and delaying the development by an adult in its area of needs for care and support, regardless of whether they meet eligibility criteria. I mentioned that on Second Reading, as my right hon. Friend the Member for Sutton and Cheam said, and I repeat it now to try to reassure the shadow Minister. The amendment is therefore unnecessary, as it merely states what is already clear in the clause. I hope that I have reassured hon. Members and that the shadow Minister will therefore withdraw amendment 57.

Photo of Liz Kendall Liz Kendall Shadow Minister (Health) (Care and Older People)

I think that amendment 57 is required. Independent living is a fundamental principle, which is why it is included in a UN convention. Disability organisations have called for it to be incorporated as they rightly see that as an important principle, especially in the context of the issues faced by adults with disabilities.

I am happy not to press amendment 66 to a Division as we could get tied up in knots about that. We are, however, worried that the aspiration on prevention will not be met in reality. I want to press amendment 57 to a Division because independent living and the duties relating to the UN convention are important.

Question put, That the amendment be made.

The Committee divided: Ayes 10, Noes 12.

Rhif adran 1 Decision Time — Clause 1 - Promoting individual well-being

Ie: 10 MPs

Na: 12 MPs

Ie: A-Z fesul cyfenw

Na: A-Z fesul cyfenw

Question accordingly negatived.

Photo of Liz Kendall Liz Kendall Shadow Minister (Health) (Care and Older People)

The difficulty with the rest of the amendments is that they refer back to the initial amendment which talks about independent living. I will ask the Clerk for advice on this. I thought that if the first amendment fell—

Photo of Andrew Rosindell Andrew Rosindell Ceidwadwyr, Romford

The other amendments fall too.

Photo of Liz Kendall Liz Kendall Shadow Minister (Health) (Care and Older People)

I beg to move amendment 65, in clause 1, page 2, line 21, leave out ‘the individual’ and insert

‘an adult or a disabled child’.

Photo of Andrew Rosindell Andrew Rosindell Ceidwadwyr, Romford

With this it will be convenient to discuss amendment 85, in clause 10, page 9, line 42, after ‘(an “adult needing care”)’, insert ‘or a disabled child’.

Photo of Liz Kendall Liz Kendall Shadow Minister (Health) (Care and Older People)

These amendments focus on the critical issue of parents who care for sick or disabled children. The issue was repeatedly raised in the other place and I pay tribute to Baroness Pitkeathley who has been a stalwart champion here. I also acknowledge several right hon. and hon. Members who raised the issue of parent carers on Second Reading. The Opposition welcome the new rights for carers in the Bill. They build on the rights that the previous Government put in place for carers and take an important step forward. But there is a serious omission: parents who care for children who are sick or disabled.

The 2010 NHS Health and Social Care Information Centre survey found that around 13% of informal carers in England care for a sick or disabled child. According to the latest census data on the total number of informal carers, that means that there are around 434,000 parent carers in England today. This is not a minor issue. Many of these parents face a desperate daily struggle trying to care for their child, battling all the different agencies to get support, often at the same time as trying to hold down work, let alone have a decent relationship with one another with all the pressures and strains. Because parent carers often care for longer than those caring for an elderly relative, they often have even worse physical and mental health problems than other family carers. Some 72% of parent carers experience mental health problems, anxiety, depression and breakdown.

The pressures of looking after very vulnerable children are terrible for many parents, who too often fall through the gap altogether. Carers UK’s research shows that while a third of all full-time carers go without any practical support, that rises to almost half of those  caring full time for a disabled child. I am particularly passionate about this issue because it has been raised with me as a local MP by staff at the Carers Centre Leicestershire and Rutland. I want to thank them for all their help with the work I have been doing on the Bill. They are regularly contacted by parents of sick and disabled children experiencing appalling problems with different services.

One such case is that of Missy and Phil Luntley from Burbage. They are not actually in my constituency but I spoke to Missy recently and it was a case that particularly struck me. They need to provide round-the-clock care for their young daughter, Andie, who is profoundly disabled and has epilepsy. Missy was the primary carer, and she had to give up her job as a specialist nurse in the NHS, which she loved, because of her caring responsibilities—it is a common problem that carers have to give up work. The family ran into trouble 18 months ago when Missy fell critically ill. She had appendicitis and suspected—

Photo of Liz Kendall Liz Kendall Shadow Minister (Health) (Care and Older People)

I thank the Minister for helping me with the medical terms.

She was rushed into hospital. She was there for three weeks, and needed four months’ recuperation. Phil started to struggle, and he asked the council for help so he could continue to care for Andie, be a good dad to their son, Elliot, visit Missy in hospital and carry on working. The family desperately needed to bring in some income after Missy quit her job, but they did not get the extra support they needed. Phil repeatedly asked for a carer’s assessment, but he did not get one. When Missy got out of hospital she was bedridden and Phil had to care for her too. He had to take seven weeks’ absence from work, which was granted only because he had a sympathetic employer. He lost a stone in weight and his blood pressure has been permanently raised.

They still do not have support at the weekends. Phil has had to go down to four days a week at work. It has been a complicated process. Essentially, when they asked the council why they were not getting the support they needed, they were told that they did not have any rights because

“parents are not considered unpaid carers, they chose to have children, they have a parental responsibility.”

Photo of Jim Shannon Jim Shannon Shadow DUP Spokesperson (Health), Shadow DUP Spokesperson (Transport), Shadow DUP Spokesperson (Human Rights)

The hon. Lady is talking about a legal matter. I am sure she is aware that the Law Commission has called for the law to be strengthened for adult carers who look after children under 18. Therefore, there has been a request from the law bodies, which backs up what the hon. Lady said.

Photo of Liz Kendall Liz Kendall Shadow Minister (Health) (Care and Older People)

The hon. Gentleman is absolutely right.

The council gave the Luntleys the wrong advice, because they did have a right to an assessment. If councils are not doing what they are already required to do in law and they are not included on the face of the Bill, the result will be that at the very least the same appalling situation will continue, and I am worried that  it will get worse. If councils are not specifically included in the Bill, they will still carry out only their statutory responsibilities.

The Luntleys asked for something very basic. Their area has an emergency carer card scheme, so if a person has a card and falls ill, whoever sees the card knows that they have to put care in place to look after the person who needs support while the carer is ill. However, they were told,

“this is an adult social care scheme…the scheme for when there is no one, not when there is someone but they want to go to work.”

The family was denied support because they chose to go out to work. That is not good for their daughter, Andie, it is not good for the health of Phil and Missy and it will end up costing the taxpayer more if Phil also has to give up work on top of Missy losing her job, with the result that the entire family ends up on benefits.

What the council told the Luntleys was not accurate; the law recognises parent carers. The Carers (Recognition and Services) Act 1995, which was the result of a private Member’s Bill of the late and much missed Labour MP Malcolm Wicks, who used to be on my corridor, gave parent carers the right to an assessment, and it was built on by the Carers and Disabled Children Act 2000. The Carers (Equal Opportunities) Act 2004 set out that the assessment of all carers should consider the ability of carers to participate in work or training. The Luntleys’ experience shows that many councils do not fulfil their obligations, even under the current, inadequate legislation. That is why the Law Commission review said that the rights of parent carers must be in line with those of other carers, and they should be consolidated in the Bill. The Joint Committee on Human Rights said the same in its report on the Children and Families Bill in June.

However, the Government repeatedly refused to accept those recommendations in the other place. In response to amendments to give rights to parent carers tabled by Baroness Pitkeathley, the Minister, Earl Howe, claimed that provision for parent carers is

“sufficient…under Section 17 of the Children Act 1989”.—[Official Report, House of Lords, 9 October 2013; Vol. 748, c. 97.]

That clearly is not the case; otherwise, Missy and Phil would not be experiencing their problems. Even worse—I am sorry to tell the Committee this—when Baroness Pitkeathley again tabled the amendments to the Children and Families Bill, Lord Nash, the Minister responsible, said:

“We are clear that any change to the Children Act 1989 to assess the needs of parent carers separately would change fundamentally the principles of the Act and risk the needs of the children becoming second to those of their parent.”

This is the bad bit:

“Recent serious case reviews for Daniel Pelka and Keanu Williams have shown starkly what can happen when the needs of parents are put ahead of those of the child.”—[Official Report, House of Lords, 20 November 2013; Vol. 749, c. GC479.]

That is an astonishing claim that giving parent carers rights could lead to child abuse, with which we clearly do not agree.

At the very least I think the current bad position would be entrenched if parent carers are not in the Act. In reality I think it will get worse. If they are not  explicitly recognised in the Act, councils will fulfil their statutory responsibilities and no more. Indeed, Missy and Phil were recently told by the lead councillor for children’s services:

“The County Council has to identify £110m worth of savings and until we have the budget, any non-statutory aspect of Children and Family Services is on hold."

So if the law does not require councils to include parent carers, the most likely result is that they will not.

Phil recently said in a blog he wrote for Carers UK:

“Parent Carers need equal status in law to carers of adults and to sibling carers. To make a distinction”— his words, not mine—

“is to discriminate which places Parent Carers at a massive disadvantage.”

National carers’ organisations such as the Carers Trust and Carers UK agree. Carers UK says:

“Parents of disabled children will be the only group of carers with lesser rights to assessment and support, as the rights of other adult carers and young carers are strengthened. Existing rights for parent carers will become even more difficult for professionals to navigate and use if they are left in rump legislation.”

Opposition Members agree; that is what our amendments seek to address and I hope the Minister accepts them.

Photo of Paul Burstow Paul Burstow Democratiaid Rhyddfrydol, Sutton and Cheam

It is a pleasure to serve under your chairmanship, Mr Rosindell. I want to speak briefly to these amendments because I suspect we will return to them when we come to clause 61 or 62, as I have tabled amendments addressing similar issues. However, they do bear close examination in Committee.

I echo the comments made about what I regard as ill-judged remarks during the Lords consideration of amendments on this. The Minister may have been poorly advised; he was certainly not well advised to use the language he did in drawing a parallel that I think was wrong.

Having said that, when we took evidence at the Joint Committee on this question of the gaps that the attempt to provide a new modern statute would create, we were persuaded that the process of providing an adult statute had had the unintended consequence of creating a situation where the succession of private Members’ Bills that had been passed that gave rights to parent carers and some rights to young carers would be left behind—would be less clear and visible. We were also told that there would be a higher access threshold. That seemed wrong to the Committee, and from my view as a Minister would not have been my intention at the time.

There is a separate Bill still before the House—the Children and Families Bill—and I know Ministers are actively responding to representations on this matter made by me and Members across the House. I hope the Minister can assure us that—whether through the Bill before us or, more appropriately, by amendment of the Children and Families Bill—the special circumstances of parent carers will be recognised, so that they are not disadvantaged relative to other carers or their rights left behind, as my cross-party Committee feared they might be. I hope that the Minister, in responding to the shadow Minister’s amendments, can give us some reassurance on that.

I will offer some words by way of an amendment that will be debated in a couple of weeks. I hope that the Minister will give consideration to that before our debate.

Photo of Bill Esterson Bill Esterson Llafur, Sefton Central

It is a pleasure to serve under your chairmanship, Mr Rosindell. Both previous speakers expressed concern about remarks made by the Minister in the Lords about how support for parent carers could lead to children being neglected or abused, which was a worrying comment. After all, surely support for parent carers helps to avoid neglect and abuse. If the parents are looked after and cared for properly, it must be more likely that they in turn will look after the children. That will also create a relationship whereby concerns about the way children are being cared for can be identified and acted on. I therefore think that the opposite of the Minister’s view is the case: supporting parent carers is in the best interests of children.

Will the Minister explain how this legislation fits with the legislation in the Children and Families Bill, which is still going through the Lords? I served on that Bill Committee in this room some time ago. Quite properly, because it is a very important piece of legislation, that Bill is taking a long time to work its way through the system. The two Bills have many crossovers, so I shall be grateful if the Minister will explain how they fit together.

On Report, Baroness Pitkeathley gave the good example—as did my hon. Friend the shadow Minister—of the parents who had been caring for their 30-year-old very physically and mentally disabled son. They had struggled to find support, whether respite care or other types. They had been told, “You’re not carers. These rights don’t apply to you—you’re only parents.” As Carers UK told us, it costs something like three times as much on average to bring up a disabled child as it does to bring up a child who is not disabled. There must come a point at which caring for a disabled child well into adulthood goes beyond just being a parent and becomes a caring responsibility for which they should quite rightly expect support from the rest of society.

That is what my hon. Friends’ amendments try to do and I agree that what is stated is important. There is a significant difference between “the individual” and specifying a disabled child as well as a disabled adult; otherwise, there is a danger that insufficient importance would be attached to the role that parents of disabled children bring in caring for their children.

Photo of Norman Lamb Norman Lamb The Minister of State, Department of Health

First, I agree with the shadow Minister that the pressures and strains, as she put it, on parent carers are often significant. None of us would want to understate the challenges that they face. The case study that she offered us of Missy and Phil described strongly how the system can fail individual families. To me, that seems to be an example of rather poor care and support for that family, irrespective of what the legislative framework happens to be.

Amendments 65 and 85 would extend assessment provisions relating to adults caring for adults to adults caring for children. Policy on assessing and supporting children and their families lies with the Department for Education, including support for families where that is in the best interests of the child.

I fear that it is a recipe for confusion to include a provision for those caring for children within a Bill that focuses on provision relating to adults. The term “an individual” in clause 1 already includes both an adult and a child. Replacing that with “an adult or a disabled  child” as proposed in amendment 65 would in fact narrow the definition in this case, by excluding children without disabilities from that definition. I am sure that, on reflection, the shadow Minister would not want to do that to the phraseology of the “individual” in clause 1.

Amendment 85 seeks to extend the provisions in clause 10, which relate to a carer’s assessment, to include an adult caring for a disabled child. As the definition of a carer in clause 10 provides the definition of a carer for the purposes of the Bill, it would in effect extend all the provisions within the Care Bill relating to adults caring for adults to include those caring for disabled children under 18. I suspect that it is an unintended consequence of the amendments tabled by the Opposition that this is the consequence of these amendments. We must be wary of simply replicating arrangements for adults caring for adults without understanding the interrelationship with other legislation for children and families, in particular the provisions available under the Children Act 1989. That could lead to unintended consequences.

In light of debates in the other place on the Care Bill and on the Children and Families Bill, the Government have agreed to work with carers’ organisations, parent carers and other stakeholders to review existing legislation, guidance and practice for assessing the support needs of those caring for children. My right hon. Friend the Member for Sutton and Cheam referred to that. It is important that no one group is left behind. A round table discussion will take place on Friday this week to explore these issues further. The Government’s review is the right place to explore these issues. These amendments to the Care Bill are not—

Photo of Jim Shannon Jim Shannon Shadow DUP Spokesperson (Health), Shadow DUP Spokesperson (Transport), Shadow DUP Spokesperson (Human Rights)

Have the Minister and the Government had any representations from the Law Commission? We talked about this earlier. I presume it put forward its thoughts on how best to change the legislation to enable this to happen. If so, is the Minister involving it in the talks process that he says he is having on Friday?

Photo of Norman Lamb Norman Lamb The Minister of State, Department of Health

I am grateful for that intervention, late as it was in my speech. I understand that we have not had representations from the Law Commission. In a sense, this also addresses the question posed by the hon. Member for Sefton Central. He might have thought I had forgotten about him. I also take the opportunity to apologise if I inadvertently misstated his position in a debate before lunch. The intention was not to do so. We have tried to have the two Departments working closely together at officer level and at ministerial level. That led to the amendment on young carers, which was widely welcomed over the summer by all those who have been lobbying for change. Sometimes Government Departments working together can achieve things in unexpected ways.

The objective is for the two pieces of legislation to knit together and ensure that there is a whole-family approach. That is the important thing—to look at the whole of that family unit, the needs of the parents, who may be caring, the needs of youngsters, who may have care needs, and also the important concerns relating to young carers within that family unit. We would be  misguided if we sought to address the issues surrounding adult care and children’s care in isolation. The two must be seen as part of the whole.

Photo of Liz Kendall Liz Kendall Shadow Minister (Health) (Care and Older People)

With the greatest respect to the Minister, we do not need representations from the Law Commission. It has already made its recommendation in its big review. Lots of the other proposals were put forward by the Law Commission. Its review has resulted in the Bill, but parent carers have been left out and the Law Commission says they should be included in the Bill. Parents are adults; they are carers. These amendments relate to a clause saying that they should have their needs assessed. We do not need a review; we need action. We do not need a round table. We need the rights in the legislation, as carers organisations and the Law Commission say.

Does the Minister disagree with the Minister in the other place? Earl Howe says that what is already in the Bill is good enough. I do not agree and the Minister probably does not agree, either. The recommendations have been made and should be fulfilled. Parent carers are adults and should be part of the legislation. I am happy to look at making the changes in the Children and Families Bill, but Lord Nash has refused to do that. It is getting very late in the day. We want action, so I intend to press both amendments to the vote.

Photo of Norman Lamb Norman Lamb The Minister of State, Department of Health

Following the earlier practice of the hon. Member for Strangford, may I ask the hon. Lady, before she presses these matters to a vote, whether she is conscious of the unintended consequences of what she seeks to do through these amendments and the way in which she would narrow the definition of “individual” in terms of the application of the principle of well-being and applying the definition throughout the entire Bill, in amendment 85?

Photo of Liz Kendall Liz Kendall Shadow Minister (Health) (Care and Older People)

I believe our amendments are the right ones. We have tabled further amendments to later parts of the Bill. We will keep coming back to the issue. Like us, the right hon. Member for Sutton and Cheam has tabled further amendments. Is the Minister aware of the implications of his Government’s failure to include parent carers in the Bill at all?

Photo of Andrew Rosindell Andrew Rosindell Ceidwadwyr, Romford

I note that amendment 85 will be taken later in the proceedings.

Question put, That the amendment be made.

The Committee divided: Ayes 9, Noes 11.

Rhif adran 2 Decision Time — Clause 1 - Promoting individual well-being

Ie: 9 MPs

Na: 11 MPs

Ie: A-Z fesul cyfenw

Na: A-Z fesul cyfenw

Question accordingly negatived.

Clause 1 ordered to stand part of the Bill.