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The Bill comes to this House from another place, where it was introduced by my honourable friend the Member for Stalybridge and Hyde. I want to record my thanks to him, and particularly to the Minister in another place for accepting significant amendments to the Bill on Report which have made it more sensitive to carers' situations. All carers organisations are grateful for that.
I should like also to record my sincere thanks to the noble Lord, Lord Morris of Manchester. His wisdom, experience and advice have been extremely helpful to me. The noble Lord is, of course, very experienced on Private Members' Bills as well as having been a Minister. His commitment to the carers' cause long pre-dates that of everyone else. I am most grateful to the noble Lord.
About five years ago, I sat below the Bar and watched the noble Lord, Lord Carter, bring to this House a Private Member's Bill, the Carers (Recognition and Services) Bill, which had been sponsored in another place by Malcolm Wicks and which the noble Lord steered through this House. It was the first piece of legislation specifically aimed at carers. It enshrined in law a broad definition of "carer" and enabled carers to receive an assessment of their own needs alongside the assessment of the person for whom they are caring.
Although that Act provided important and valuable recognition for carers, carers are still unable to access services directly in order to support their caring role. It was always accepted that further legislation would be required--that was accepted by carers themselves, by the carers organisations and by the Government in their national carers strategy published last year. If this new Bill is successful, it will enable carers to ask for an assessment in their own right and to access services provided by the local authority.
At some time in our lives many of us will be in the position of caring for someone else. We give care willingly because we love those who nearest and dearest to us. For some, the caring role will become a larger part of their lives, taking up more of their time, because someone close to them becomes ill or disabled.
Providing a substantial amount of care on a regular basis can be very hard work and may be emotionally draining. Like many noble Lords, I am acutely aware of the manifold problems that carers face, particularly from my role for 10 years as chief executive of the Carers National Association. Often, carers are struggling to continue in their caring role and want help in maintaining their valuable contribution to the care of a loved one.
The main aim of the Bill is to enable local councils to offer new support to carers. That will not only help carers to continue to care; it will assist carers, so that they can be assured that their own health and well-being are being considered.
Clauses 1 to 5 and Clause 8 introduce changes to the law which affect carers aged 16 or over who provide or intend to provide a substantial amount of care on a regular basis for another individual who is aged 18 or over. Clauses 6 and 7 make specific provision for people with parental responsibility for disabled children.
Clause 1 provides that the carer who is 16 or over has the right to an assessment, on request, from the local council of his or her ability to provide and to continue to provide care for the person cared for. This request will be met if the carer provides or intends to provide a substantial amount of care on a regular basis for another individual aged 18 or over. The provision will be particularly helpful where, as sometimes happens, the cared-for person has refused an assessment for community care services or the delivery of community care services following assessment.
That assessment will enable the local authority to decide whether to provide services to the carer under Clause 2 of the Bill. The local authority must consider the assessment and then decide whether to provide services to meet any assessed needs which are identified.
It is important to point out that the Bill is sensitive to the complexities of the relationship between the carer and the person cared for. Clause 2 details that if the carer and the person cared for agree--and it is important to stress that--services, although provided to the carer, may be services that could be delivered to the person cared for by way of community care services. That might be either because the person cared for has refused help from the local authority, as sometimes happens, or because in the particular circumstances of that relationship it is more appropriate for the service to be provided directly to the carer to support him or her in the caring role or maintain his or her own health and well-being.
Such services, when provided to the carer but delivered to the person cared for, may not, except in prescribed circumstances, include anything of an intimate nature. Again, this relates to sensitivity about the relationship between the carer and the person cared for. There is a power to set out in regulations what is or is not a service of an intimate nature. It might include, for example, dressing, feeding, lifting, washing and so on.
The Bill does not offer carers of adults the right to determine the services to be delivered to the people they care for; nor does it give the local council the power to provide as carers' services those services of an intimate or personal nature which are usually delivered to cared-for people as community care services. However, the Bill recognises that the lives of users of community services--persons cared for and their carers--are closely linked, arising as they do out of a pre-existing relationship. The Bill ensures that
The effect of subsections (2) to (4) of Clause 4 is that when a local authority proposes to provide a particular service either to the carer under the Bill or to the cared for person under community care legislation it must decide who is the recipient of that service. For example, for the purpose of deciding who is to be liable for any charges and who may complain in relation to the service in question, it is important to know to whom the service is being provided. It is also important to point out the restrictions. The user and carer must agree on who is the person to whom the service is provided. Another important proviso is that the council's decision must be made with absolutely no regard to the means of the carer or the person cared for; in other words, it cannot decide who is better able to pay for the service and then say that that is the party to whom the service will be provided.
I turn to an interesting part of the Bill to do with vouchers. A key issue for many carers is whether they can get a break from their caring role. A short break helps a carer to maintain his or her own health and well-being and often helps to maintain the relationship by providing a little time off. A break is an opportunity for carers to have a life of their own and perhaps spend some time relaxing with family and friends or with those for whom they are caring but free from the usual caring responsibilities. Two important issues dictate whether a carer can enjoy a break. First, is there flexibility in the timing of the break? Breaks are of no use if they are provided only every fourth week and the person may not need it at that particular time. Secondly, does the additional community care service that is provided while they take a break benefit the persons for whom they are caring? The carer simply cannot take a break unless adequate services are provided as a substitute.
Clause 3 enables the Secretary of State, or, in relation to Wales, the National Assembly for Wales, to make provision in regulations for local authorities to issue vouchers for short-term breaks. This scheme will enable the person who is cared for to arrange for someone to provide services to him or her in place of the care which would otherwise have been provided by the carer. The person cared for may choose to remain at home or move into residential accommodation for a short period. In either case it is intended that, whether expressed in a monetary value or for the delivery of services for a period of time, or both, vouchers may be redeemed only in exchange for services delivered by local council-approved providers. I know that that is also of importance to carers.
The short-term break voucher scheme will introduce a simpler way to achieve a level of flexibility and choice in the delivery of short-term breaks than is currently available to community care service users via direct payments. This is an additional option which some may find simpler than using the direct payments scheme. As to direct payments, at the moment disabled people may ask their local council to assess their needs
Clause 5 of the Bill amends the Community Care (Direct Payments) Act 1996 to extend local authority power to make direct payments to carers aged 16 and over. Carers must use the money to purchase for themselves any carer services that they have been assessed as needing to support them in their caring role and to help maintain their own health and well-being.
I turn to an important addition to the Bill which was made in another place to deal with those with parental responsibility for children with disabilities. Clause 6 provides that a person with parental responsibility for a disabled child has the right to an assessment by the local authority of his ability to provide, and continue to provide, for the care of the child. The local council must take that assessment into account in deciding what services, if any, to provide to the child and family under Section 17 of the Children Act 1989.
Clause 7 inserts new Section 17A into the Children Act 1989. The provision extends the option of direct payments to people with parental responsibility for a disabled child for services for the family and to disabled children aged 16 and 17. The responsibilities of parent carers and others with parental responsibility for disabled children are often made more arduous by the difficulty of accessing mainstream services, for example childcare, including after-school clubs and leisure activities. Where those carers do not think that services are sufficiently tailored to meet the needs of their individual families, direct payments will offer more choice in the way that services are delivered.
The extension of the option of direct payments to 16 and 17 year-old disabled people may be helpful at what is often a very difficult time for them in the transition from childhood to adulthood, in particular when they seek to become more independent of their parents. These direct payments will give such young people more control in deciding how to receive services.
Clause 7 also inserts a new Section 17B into the Children Act 1989 to enable the Secretary of State, or, in relation to Wales, the National Assembly for Wales, to make provision in regulation for local authorities to issue short-term break vouchers to people with parental responsibility for disabled children. Vouchers will provide additional flexibility and choice to carers who will be able to exchange them for services, such as respite care, at times which are most convenient for their families.
Clause 8 enables local authorities to charge carers for services provided to them. That is achieved by an amendment to Section 17 of the Health and Social Services and Social Security Adjudications Act 1983. This is a contentious issue with which carer organisations have been much concerned. While this is a simple Bill, it is not really an uncomplicated one, because charging for services is a difficult issue. We already know from the report Charging with Care, published in May by the Audit Commission, that
A recent survey carried out by the Carers National Association entitled Caring on the Breadline, which I have quoted in your Lordships' House in the past, also found that 33 per cent of carers who responded to that survey were in receipt of income support but still had to contribute towards charges for services. The other problem about charging is the tremendous lack of consistency and varied interpretation of charging policies. One of the culprits is poorly written and in places contradictory guidance. That is why the guidance to accompany the legislation when it becomes law will be of considerable importance. It will offer a new opportunity to set the record straight and make guidance on charging clear and consistent, which is what everybody wants.
If a charging regime is to be applied, it must be done in a fair and equitable way. It would be very welcome if the guidance emphasised that local authorities could use their discretion not to charge carers, since many carers are already on low incomes. I hope that the Minister's other review of charging for non-residential care services will take on board the issues raised during the passage of this Bill. I also hope that the Minister will be able to assure the House that on this issue consultation with the carers' organisations, which is absolutely vital, will take place as the guidance is developed. There are other clauses which make consequential amendments or deal with financial provision, interpretation and commencement at the end of the Bill.
In conclusion, carers' needs are diverse. As individuals they have particular needs, relationships and support to enable them to continue with their chosen role--I emphasise that most people care willingly and lovingly and want to continue to do so--while maintaining their own health and well-being, which is also important. The Bill offers local councils the opportunity to be innovative in the ways that they support carers, thereby helping them to maintain that caring role.
Services to carers are not defined in the Bill as such. The social services department may provide any service that it sees fit which in its view, with the agreement of the carer, will help the carer to care. Such service may take the form of physical help, assistance round the house or other forms of support, for example help with transport costs and taxi fares for those who live far away from frequent public transport routes.
This Bill empowers carers, not by taking away any of the rights of the people who need care and support, but by introducing for the first time support for carers which ensures that both people in the caring relationship are valued. On that basis, I commend the Bill to the House.
Baroness Andrews: My Lords, I am extremely grateful for the opportunity to make my first speech in this House on a Bill which has commanded so much respect and support in another place, among carers' associations and all the people who care about raising the status and independent rights of carers.
Before I turn to the Bill, perhaps I may say a few words of thanks not only to noble Lords on all sides of the Chamber who have been extremely welcoming and encouraging over the past few fraught weeks but also to the officials and Officers of the House who could not have been kinder or more supportive in the help they have given.
I know that I have tested your Lordships' collective patience in many ways, not least that of my parliamentary mentor, who has been splendid. However, I managed to escape her kindly but vigilant eye on my first day in this House. I sat down and was delighted to be greeted by warm smiles, even a few waves, from my Front Bench. I thought that I had "arrived" when I received a written note from the Doorkeepers, I assumed welcoming me in the form of written evidence. I was dismayed when I read, "Do you realise you are sitting on the Cross Benches? Why don't you join us on our Benches?" If it had not been for the kindness of the Doorkeepers--I think that they are still on red alert--I would probably never have come back. But I have and, I think to the relief of my Front Bench, intend to remain on these Benches.
At this stage, I should own up--it is clearly a time for confession--that I have had a somewhat wayward parliamentary career so far. I began life as a parliamentary clerk in the Library of another place. After many happy years I defected and crossed the corridor to become a special adviser to Neil Kinnock when he was Opposition leader--without whom I am sure we would not have the renewed Labour Party we have today. I am proud to have been able to serve it. I am glad to say that, although I believe my defection was a precedent, it did not become a trend. No one has followed me; and if clerks are thinking of taking this route I would counsel them. I count it as a very great privilege to have served Parliament in two very different ways and now, if I may use the expression, in a third way.
The Bill before this House has long tap-roots reaching back to the 1970s, when I first came across some of the issues associated with carers and, as my noble friend Lady Pitkeathley said, first became indebted to her and the Carers National Association, with its enormous expertise and commitment, without which we would not have the Bill today. I became inspired by the concerns for disabled people, not least those of the noble Lord, Lord Morris of Manchester, who has played a unique role in improving the lives of disabled people. We are very much in his debt, and that of my noble friend Lord Ashley of Stoke.
Perhaps I may mention one case which illustrates what these young people do. Khalid is 16 and attends Falinge Park School in Rochdale. He looks after a severely disabled mother. He provides her care and also does all the domestic chores. He looks after a younger brother and sister. He sells Betterware catalogues in his spare time to raise income for the family. He has an attendance record of almost 100 per cent in school. He has just received a Diana, Princess of Wales Award, from the charity which I have the privilege of running. His head teacher has told me that were it not for the primary school which discovered that he was undertaking this caring at a very young age, the secondary school would never have known because it would have had no way of finding out. He would not have told the school.
Many young people are not as successful as Khalid in keeping home, family and school life together. Those who look after mentally disabled parents are particularly at risk because, by its nature, that care is more isolated and problematic. Despite their responsibilities, as my noble friend said, young carers are positive and proud to be carers. Much of what they do is at enormous cost to themselves. It is unacceptable that their lives are often difficult. By definition, they are often poor and isolated. Many feel guilty when they are not at home caring, and fearful of outside interference. Despite their best efforts, and indeed all the skills they develop which go uncredited, a third of them miss school or have educational difficulties. A recent report from Loughborough University--it is so excellent in this field--confirms that many carers at the point of transition to adulthood are at risk of educational failure and unemployment.
It is, therefore, all the more serious that only one in 10 seek assessment under past legislation. There are good reasons for that. They are less well informed and less likely to find out about their rights. Many are afraid that if they make their own needs felt, social services will have no option but to split up the family. Many feel that asking for help is a sign of weakness and inadequacy. More significantly, the research also suggests that the educational services, with which they have greatest contact, play a minimal role in identifying young carers or referring them for help.
The Bill will, I hope, empower young carers in three specific ways: by meeting their needs for information; by providing for someone to talk to; and providing for more practical help and support. Without wanting to institutionalise the burden of care on these young
Schools can hold the key to that. I believe that they would want to do more. I hope that it will be possible for schools and education authorities to play a more proactive role in listening to and supporting young carers and in identifying them. I should like to see the Department of Health and the Department for Education and Employment working closely together, nationally and locally, providing more help and advice to schools about how to spot young carers and help them without being intrusive or reducing their confidence. They need to find more ways of providing flexible learning opportunities so that those young carers have a second chance not only to do their homework and catch up with their friends but also to meet friends and socialise. After school opportunities can be a lifeline for many of these young people. I recommend the Swale Young Carers project which is doing excellent work.
I should also like the new social inclusion programmes, such as the Excellence in Cities programmes, to see how they can best help young carers who have special needs and gifts--there is good practice in this area--and to ensure that the young carers projects (which are sometimes the only institutions with which young carers are in touch) are within their reach so that they are sustained and supported at local level. Once they know about their rights, young carers will use them. Their lives and their life chances will be infinitely improved.
Finally, I thank noble Lords for the courtesy they have shown a maiden speaker and for the opportunity to support a Bill which I believe meets the best instincts of a modern and coherent welfare state.
Lord Rix: My Lords, first, perhaps I may congratulate the noble Baroness, Lady Andrews, on her extremely courteous and most effective maiden speech. This is a maiden for me, too; it is the first time I have had the honour of paying tribute to a maiden speaker and I am delighted that the noble Baroness chose a subject which is so dear to all our hearts. She will be a great asset to your Lordships' House and I can assure her that should she ever want to cross the Floor, she will be most welcome back to these Benches.
I also want to thank the noble Baroness, Lady Pitkeathley, for so ably introducing the Second Reading. If I repeat some of her remarks, I apologise. However, I believe that any repetition of carers' needs, whatever their age, is all to the good.
It is four years since I introduced my own Private Member's Bill--Disabled Persons and Carers (Short Term Breaks) Bill--in this House, seeking to extend the support available to carers, who at that time were having to voice on the social policy agenda. I am delighted that over the years, there has been a growth of awareness of the issues facing carers, and greater attempts to recognise and support their worthwhile practical and emotional commitment to others.
The Bill will be a welcome addition to the statute book, giving carers a legal entitlement to an assessment in their own right for the first time. Carers' needs should no longer be secondary to those of the disabled person. It is hoped that both parties will have the opportunity to access individualised support and to enhance and maintain their welfare.
This legislation enshrines an important principle, but I am concerned at the limitations of what it can deliver in practice. A right to an assessment is one thing; a right to a service is quite another. My Bill of four years ago sought to address the issue of lack of provision on the ground for carers, an issue which unfortunately has not been resolved. Perhaps noble Lords will permit me, as President of Mencap, to provide a number of statistics which may be difficult to digest during the pace of today's debate, but should provide many with food for thought in tomorrow's Hansard.
Caring for a person with a severe learning disability can be a 24-hour a day job, seven days a week for anything up to 50 years. Almost all children with learning disabilities are cared for by their relatives and only about 30 per cent of those children will move away from the family home into adulthood. That means that 60 per cent--more than half of all adults with severe disabilities--are looked after by family carers making a lifelong commitment.
Many carers are not getting the time off from caring which they urgently need. It is estimated that more than 100,000 people with learning disabilities and their carers are not receiving any short-term break support. Research by Mencap demonstrates that more than 40 per cent of carers of people with learning disability have not been out in the past six months for an evening with their family, partner or friends. Two-thirds of carers who do receive breaks say that they need more to meet basic family needs.
We have in place a National Carers Strategy which has injected some resources into help for carers, but there is still a long way to go. We cannot be complacent when hundreds of thousands of "unsung heroes"--to quote the Prime Minister--are not receiving any support to minimise their social exclusion. Giving carers the right to an assessment for themselves is an important step, but it is only part of the solution to a much bigger problem. Without an expansion of provision, assessed need will rapidly become unmet need, which is unsatisfactory, to say the least, for all involved.
In terms of ironing out the detail of this legislation, much has been done in another place. While I am not in favour of charging either disabled people or carers for community care services, I believe that the Government are taking a sensible approach to sorting out the consequences arising from the Bill. However, implementation will be difficult. Perhaps the Government will advise the House of how they plan to monitor the working of the charging system in practice and whether they plan to review it if that becomes necessary.
The other critical factor in the implementation of the Bill will be getting the message out to carers about their new rights. It has been difficult enough reaching carers with information about existing legislation, let alone new and quite complicated changes. Those noble Lords familiar with surfing the Internet--I have to confess that I am not one of that minority in this House and the instruction I was due to take next Tuesday has had to be postponed because I shall be back in the House debating the child support Bill--may be aware of the Government's website for carers. That is one way of reaching carers, but I would hazard a guess that the good old written or spoken word is likely to capture a wider audience, particularly among older carers.
I want to say just a few words on the other important strand of the legislation; the extension of direct payments to the parents of disabled children and to disabled 16 and 17 year-olds. These are both very welcome extensions of the scheme, which can empower families with greater choice and flexibility as to the services they receive. Again, a fairly simple change in legislation will require much support on the ground if 16 and 17 year-olds with learning disabilities are to benefit from it.
Under the present arrangements, very few people with learning disabilities use direct payments, principally because support has not been in place to enable them to make use of the scheme. There is evidence in the Department of Health's London Learning Disability Strategy that there are only nine direct payment users in the London region, which is an appalling figure given the size of our metropolis.
I would therefore welcome assurances from the Government that support from 16 and 17 year-olds with learning disabilities will be factored into any guidance on the use of direct payments. Additional funds should be set aside for advocacy, and young people with learning disabilities should be involved in the pilot schemes. Regrettably, many have been excluded from such schemes and then refused access once schemes have been rolled out because the right support is not in place. Once again, every effort is required to publish accessible information about what choices are available to people with learning disabilities.
To conclude, I would just like to reiterate my support for the legislation and to express my personal gratitude for the sterling work undertaken by the noble Baroness, Lady Pitkeathley, and Tom Pendry, Member of Parliament for Stalybridge and Hyde, and indeed the Carers National Association for bringing these issues to the fore. I do hope that the Bill forms a small part of an ongoing project to support carers and I look forward to seeing it pass through your Lordships' House absolutely and completely unopposed.
Naturally, I congratulate my noble friend Lady Pitkeathley on her clear and helpful introduction to this important Bill. I thank her for the characteristic warmth and kindliness of her reference to my parliamentary work. I also congratulate my honourable friend Tom Pendry both on his good fortune in the ballot for Private Member's Bills in another place and on the humanity of his choice of Bill. "Tom Pendry's Bill"--as this measure will inevitably be called--offers significant new benefits to carers and parent carers of disabled children; and I feel sure that your Lordships' House will want to facilitate its early enactment.
My noble friends Lady Pitkeathley and the Minister know why Tom Pendry has kept in close rapport with me on his Bill. He said, in commending the Bill to another place, that our friendship "goes back a long way" and that he was sustained in the work of promoting his Bill by my encouragement. We have been friends for 50 years and very few of his friendships or mine can go back much longer than that. We first met when Tom was 15, when I called him to speak at a meeting that he was too young to attend. I am delighted now to support him again and that he asked me to advise him on his Bill's progress.
The Bill is, of course, a lineal descendant of the Bill, enacted 25 years ago by the Labour Government in which I was the Minister for Disabled People, to introduce the invalid care allowance: the first-ever statutory cash benefit for carers in any country. No one did more then to assist me in introducing that allowance than the late Dame Flora Robson who, with her colleagues in the National Council for the Single Woman and her Dependants, one of the parent bodies of the Carers National Association, worked so long and hard for the landmark legislation which they helped to enact. The Crossroads Care Attendant Scheme, then only recently founded and of which I was a Patron from its earliest days, also played a leading role in creating the climate of parliamentary opinion that made the invalid care allowance possible. Its pioneering work, too, should be remembered today as we build further on what it achieved.
Local authorities and others can do much within existing community care legislation to increase flexibility and choice for carers; but even where the person being cared for is happy to be assessed, there are legislative obstacles that prevent the provision of services direct to carers. Yet it can be self-defeating not to give a local council the power to provide services direct to carers; for example, the cost of a taxi to help a carer to go shopping or take part in leisure or educational activities. For to do so can often be very much cheaper than the alternative of providing more hours of a "sitting service".
The Carers and Disabled Children Bill goes further than the 1995 Act by enabling local authority social services departments to supply certain services direct to carers following assessment. And the services they supply will support carers in their caring role and enable them to go on caring by maintaining their own health and well-being.
I hope very much that local councils that have not so far provided or commissioned such services as shopping only, cleaning only or other low-level help, will review their failure to do so even before the enactment of this Bill. Such services, if targeted purposively, can be of crucial importance to carers and the people they care for in saving them from higher dependency and the tax and council tax payer from the need to provide costlier forms of help.
New freedoms are conferred by this Bill for the local authority to deliver the services best suited to the needs of carers and most likely to help them to maintain their caring role; but they are limited to protect the independence of disabled, learning disabled and frail elderly people. Thus help for carers which takes the form of a service delivered to the person cared for may not, except in prescribed circumstances, include anything of an intimate nature.
Carers and those they care for alike will want to know how "prescribed circumstances" will be defined. I have been given by Tom Pendry the example of a non-intimate sitting service being delivered to the person cared for. If the carer's return to the house is delayed, the person cared for may need to be lifted and helped with toileting, and clearly it would be illogical if a paid sitter could not give that help in an emergency.
A second limitation on the new freedoms for the local authority to provide services to carers is that, while the Bill gives carers the right to services, even when the person they care for has refused an assessment or the delivery of services following assessment, services will not be provided to cared-for people against their wishes. Where a person being cared for has refused services, she or he might, of course, be happy to have a person they already know well come and sit with them while their normal carer takes a short break. In such circumstances this non-intimate sitting service could be delivered as a carers' service. I am very glad that in this way the Bill addresses the important issue of the balance to be struck between the needs of carers and the important principle of defending the independence of disabled people; and indeed that it does so in such a thoughtful way.
We know what carers want. They want good quality services for the person they care for so that she or he will have the best quality of life possible. Carers and parent carers want recognition of their caring role and practical help to maintain that role without detriment to their own health and well-being. They want to be supported so that they may, as my noble friend Lady Pitkeathley said, still have a life of their own outside of their caring responsibilities without being made to feel guilty for wanting to stay in work or for needing a break from time to time.
I am convinced that this Bill will help carers and parent carers of disabled children to achieve a better quality of life. For the first time, carers will have their own needs met. Moreover, the support carers receive will be delivered in ways sensitive to the needs of cared for people, recognising that carers often care in difficult circumstances and need support that is tailored to their individual needs.
Of course, there will remain much more to do when this Bill becomes law; but it is undeniably an important step forward for carers. In wishing the Bill all possible speed in reaching the statute book--and experience teaches that speed is most important to any Private Member's Bill at this stage of a parliamentary Session--again I thank my noble friend Lady Pitkeathley for her further endeavours in keeping up the momentum of helpful change for those whose work as carers is so very important to people they care for. Any Bill that helps and makes life easier for them deserves well of your Lordships' House.
Baroness Uddin: My Lords, I begin by expressing my apologies for being unable to be present when my mentor rose to her feet to introduce this very important Bill. I also congratulate warmly and sincerely my noble friend Lady Andrews on her excellent maiden speech. I know that such congratulations are given often but I believe that not enough can be said on these occasions. On my third or fourth day here, I believe, I sat next to the noble Lords, Lord Rix and Lord Weatherill, on the Cross Benches. I was extremely comfortable there and did not want to get up. The Doorkeepers had to remind me to move but, not liking, as an adult, to be told what to do, I insisted on staying. I stayed there throughout Question Time before returning to my place. I was pleased to see my noble friend in her place today.
My contribution can be only a small addition to the comments of experienced and distinguished campaigners who have been interested in the issue since well before my time. I am grateful to my noble friend Lady Pitkeathley and the Carers National Association for their valiant efforts and campaigns, which have helped us to get this far--the passage of the Carers (Recognition and Services) Act 1995 and the introduction of this Bill to bring in new provision for all carers.
My right honourable friend the Prime Minister and the noble Lord, Lord Rix, have added their weight to those six million unsung heroes. I should be very grateful to hear from my noble friend the Minister any statistics that are available about the different ethnic origins of carers. That point may have been covered by my noble friend Lady Pitkeathley, in which case I apologise.
It is estimated that at least 1.7 million carers provide between 20 and 50 hours of care a week. The Bill is the first recognition of the sums saved by local authorities, which I am sure can be calculated in these days of best value unit costing. I would be interested to hear what the figures are.
The Bill will provide consistency and a recognition of carers' rights as well as recourse to the law if the authorities fail in their responsibilities. Although, as others have said, the 1995 Act provided important and valuable recognition of carers, they are still unable to access services directly to support their caring role. The Bill will enable them to ask for an assessment in their own right and to access services provided by their local authority. That will be welcome throughout Britain and perhaps looked at by other countries.
There has been some excellent practice in the absence of legal recourse and provision for disabled children and their families. I declare an interest. I have worked with the disabled children's services in Newham. Newham is an example of good practice, because it believes that it has a responsibility to provide mainstream services and assess the needs of all disabled children and their carers. The social services team has sought over many years to provide comprehensive and thorough assessment of disabled children from birth. The needs of their carers have been a central element of the strategy.
However, that has not always been the case in every part of the country, although many examples of good practice can be cited. The Bill will resolve that problem, establishing the right of all parents and carers to ask for an assessment by their local authority and, more importantly, providing direct payments or vouchers for them to buy in whatever appropriate services or breaks they need. It is particularly good news for carers from minority ethnic and faith communities, as they are more likely to want to purchase services more attuned to their particular needs rather than being restricted to in-house provision, which often lacks choices and sensitivity to their cultural, linguistic, social and religious needs.
Clause 2 allows the services to be anything that, in the local authority's opinion, helps the carer to care. I have some concern about the discretion given to local authorities to determine what it may be acceptable for carers to ask for. What will happen when authorities are not as enlightened or as committed as Newham social services?
The vouchers for short-term and respite breaks provided for in Clauses 3 and 7 are an excellent addition to the Children Act 1989. Boroughs such as Newham have used such ideas very imaginatively over the years. I should like my noble friend the Minister to tell us whether it will be possible for parents to use such schemes for trips abroad.
Clauses 5 and 7 deal with direct payments. I welcome the fact that disabled 16 and 17 year-olds will be able to receive direct payments for the first time, as my noble friend Lady Andrews said. The fact that parents can be more flexible in meeting the needs of the family is great progress.
It has already been said that the concept of charging for services is a matter of concern and needs to be monitored properly. We must ensure that service decisions are not based on ability to pay--an issue dealt with in Clause 4. Cash-strapped or not, local authorities have discretion and the needs of the carers and their families should be paramount.
Community care has always been based on putting needs first. That must not be confused when some authorities may be gazing at the market principle. It is good news that the Bill will ensure the maximisation of employment opportunities for carers. That is one of the key factors that keeps carers isolated from the community. Ensuring the integration in the community of carers and the people they care for is critical.
I hope that there will be wider consultation on local needs, particularly those of ethnic minority children and their carers. We are truly behind on that. It saddens me to have to repeat myself, but the mention of this need appears to have fallen on deaf ears. Will my noble friend the Minister consider researching and reporting back to the House on the matter?
When the Bill becomes law, there needs to be a proper campaign to ensure that excluded communities are made aware of their entitlements. What plans are in place for that? Will my noble friend the Minister also ensure that any resources allocated for that purpose are ring-fenced so that local authorities do not spend the money on other pressing priorities? As a local councillor, I know that vulnerable groups such as disabled people often lose out to so-called mainstream priorities.
There is no point in wasting financial resources and setting up structures simply to make assessments without recourse to resources to back up the physical and practical needs of carers. Any Bill must be accompanied by a commitment to resources. We do not want to have to come back to the issue in a year or two with another Bill to correct that anomaly. I look forward to hearing from my noble friend the Minister what resources are being put in. Funding for implementation, with the patchy progress of the 1995 Act, has become a concern for social services departments across the country. The issue can sometimes be seen as a burden rather than a duty.
The involvement of the NHS is critical to ensure that families are not shunted between local authorities and the health service. What plans are there for a co-ordinated effort, with truly joined-up services? The NHS cannot escape its responsibilities for the carers of disabled children, as it has done for so long, relying on education and social services to carry the load.
I look forward to the Bill becoming law. It is a privilege to be part of the process. I want to support the work of my noble friends and my heroes, my noble friends Lord Ashley of Stoke, Lord Morris of Manchester and the noble Lord, Lord Rix. Without them, this work would have fallen behind on the Government's agenda.
I speak today with some personal knowledge and understanding of these issues. For 22 years, my husband and I have been carers of our child. Like millions in this country, we have not done that out of obligation or duty but simply because we love the person we care for. We have saved the authorities from their responsibilities and financial obligations for too long. That has often left us totally disabled and incapacitated as a family. Families and children deserve the recognition that they should be able to live with dignity in the absolute knowledge that they are valued and entitled to be equal in our society. This Bill gives dignity and respect to us as carers.
Lord Addington: My Lords, my duty as the first speaker, indeed the only speaker, from these Benches is to welcome the noble Baroness, Lady Andrews, to this House as a fully-fledged Member. It is said that the most difficult step on any journey is the first. The noble Baroness has started well. As regards sitting on the wrong Benches, I freely invite her to come and sit on these Benches any time she feels like it, especially as there is no great press for room at the moment. The offer is there.
The Bill which the noble Baroness, Lady Pitkeathley, is presenting today is extremely important for one reason in particular which features increasingly in any discussions relating to carers and people with disabilities; that is, the needs of the individual. That is an aspect of the Bill which really attracted me to it. It addresses individual needs and circumstances.
That is usually done by identifying groups of individuals. But assessments for people in their own right, as opposed to merely for their function, is something which I take from this Bill. It will help in trying to get people involved.
We cannot do without carers for one simple reason. A few weeks ago, I asked a supplementary question of the noble Baroness, Lady Hollis. We were discussing carers and the impact of their contribution. I asked what the cost would be to the state if it had to take on all the aspects of caring. I asked also whether it was not possible to give them more money. That is a fairly standard political knock-about. The noble Baroness, Lady Hollis, rose to her feet and drove me straight to the boundary by saying that carers provide a service
However, if we can start to give help around the edges of the problem, surely we should do so. This Bill addresses that head-on. It talks about making sure that individuals can be assessed for the help that they need so that society can continue to function in the way it does now. We should give this Bill our full support and make sure that it has as easy a passage as possible.
We all know that once the Bill is enacted, that is only the start of the process. We must then make sure that we provide the right types of services in the right areas. Then there will be the interminable--or at least it seems so for anybody involved with charities which are trying to attract public services--effort of making sure that local authorities know about the provisions available. People need to be convinced of the availability of the services and the fact that they should ask for them. On and on it goes. That always happens.
Most charities which are helping any group in society initially push for legislation, and then spend the rest of their time saying that the providers of the services know what they should be doing; and then they find out the client-base so that the right questions are asked. We have only just started here. The Minister nods his head. That is a great acceptance of his fate. But this is the start of the process.
It may be that we need to come back and address the position again with subsequent legislation. That should not be seen as a failure. It merely embraces the fact that this is an ongoing situation which must be revisited. Definitive legislation does not seem to exist unless something is being abolished altogether. Therefore, we are starting on a process which must continue. But the Bill promotes the idea that certain groups must be addressed as individuals.
Carers are often subject to a form of blackmail because they seem to believe that they are letting somebody down by wanting a break. People who are being cared for, due to fear of change or lack of control in their own society, are sometimes not the most convenient people with whom to work, certainly for short periods. We must realise that those people are human beings and are not all saints. Therefore, an assessment of the carer will need to be made. That needs to be said at least once or twice as we discuss these matters. We must look at the situation realistically and in a holistic way.
This Bill strikes me as a very useful addition to the way in which Parliament can provide help. It targets help more effectively. It will be the start of a great deal of argument about whether the right resources are available and where they should be focused. But that is the nature of the beast. Indeed, that is why we are here. I hope that the Bill will reach the statute book in the quickest possible time.
I make one last comment about the Commons sponsor of the Bill, Tom Pendry. I have often worked with him on sports-related issues. I believe that this is the first time that I have had any contact with him in
Earl Howe : My Lords, there is no one in your Lordships' House better qualified to introduce the Bill than the noble Baroness, Lady Pitkeathley. She has explained it with admirable clarity and the depth of knowledge and understanding of its subject matter that we all know her to have. I should like to reassure her, without further ado, that from these Benches we welcome the Bill warmly. It contains provisions that should make a real and lasting difference to the lives of informal carers and those they look after.
I should at the outset declare an interest as President of the South Bucks Association for the Disabled, which, for a number of years, has provided residential, respite and day care services for people with severe learning disabilities in the area of the Chilterns where I live. As a result of this, I am only too well aware of the degree of commitment shown by devoted parent carers towards their very severely disabled children, often, as the noble Lord, Lord Rix, reminded us, over a period of decades. I found the speech of the noble Baroness, Lady Uddin, particularly moving in that context. Yet, as she will be aware, carers and cared for people such as these form only a small part of the overall picture. I was staggered when I came to look at the statistics on the number of individuals in this country who in one way or another care for a relative or someone close to them. The official figure, as we have heard, is about 5.7 million people. But there is a strong likelihood that even this huge figure is an underestimate.
Many people who look after someone they love are unknown to the statutory services and would not label themselves as "carers", even though that is exactly what they are. It is commonly recognised that there are many children of school age looking after disabled parents whose caring role is not revealed to anyone outside the family. I join other noble Lords in congratulating the noble Baroness, Lady Andrews, on an excellent maiden speech and, in particular, on her remarks about young carers. I understand that the 2001 national census will contain questions which should bring us a lot closer to the real number of carers in this country. I welcome that.
As it is, the figures are humbling. For five years in the mid-1990s, I was a weekend and night-time carer to my mother, who had suffered a serious stroke at the age of only 66. She was unable to walk and required a great deal of attention, including an increasing amount of intimate care. Even though I looked after my mother for only a relatively few hours in the week--as I had a full-time job with which to contend--I can testify at first hand how emotionally and physically draining it was to fulfil that carer's role. I found myself having to call upon reserves of patience and inner strength which I had never dreamt of needing and which, once or twice, were simply not there to call upon. But, looking back now, and even at the time, I would not have had it any other way.
That period of my life gave me a flavour of the kind of commitment needed by those who devote themselves for many hours each week to looking after a disabled spouse or relative. The vast majority of carers give of themselves without hesitation and, indeed, often without proper regard for their own wellbeing. Frequently, that entails a considerable personal sacrifice. There is published research which shows that a high proportion of carers suffer from a stress-related illness or physical injury. Many are never able to take a break. The extent to which, as a nation, we depend upon such individuals has already been mentioned. The equivalent economic value of the work they do has been put at some £34 billion. That, in other words, is the saving to the public purse that stems directly from people who give themselves to others for free. It can therefore be argued that the duty of society to support carers is not simply a moral obligation. It is an economic obligation as well.
That is why the Bill is so important. As the noble Baroness, Lady Pitkeathley, is well aware, the needs of carers have been recognised in earlier legislation, notably in the Carers (Recognition and Services) Act 1995, which obliged local authorities, when arranging services for an individual being cared for, to take into account the carer's ability to look after that person. At the time, that provision represented a very visible step forward.
But the 1995 Act, landmark though it was, has not always been able to deliver the degree of support to carers that was originally envisaged. That is because the carer's right to an assessment was made dependent upon an assessment of the person cared for. That person may either refuse an assessment altogether or may already have been assessed by the time the carer comes to look after him or her. As a result, many carers who would otherwise have wished for at least the chance of some help from the local authority are not currently able to pursue that chance. The Bill, for the first time, gives carers a statutory right to an assessment independently of the person being cared for.
It also contains provisions which represent a welcome new empowerment for carers. The voucher scheme and the new power for local authorities to provide services directly to carers are features of the Bill that we fully support. We also particularly support the extension of the Community Care (Direct Payments) Act 1996, which will enable local authorities to make direct payments to carers, including parent carers and young carers. If we really mean business in providing support to carers who need it, it is no use a local authority providing that support on a "take it or leave it" basis or offering it in a form that takes no account of the carer's own circumstances. Empowerment only counts for something if it means being able to choose when you are going to take a short break or what kind of service will best suit your own needs. From that, of course, comes dignity and self-respect.
If I have any concerns about the Bill they relate more to its implementation than its drafting. I share the worry expressed by the noble Lord, Lord Rix, and others about the need to tell carers about their new rights. Printing leaflets is fine as far as it goes, but how in practice are the leaflets to get to those for whom they are intended, bearing in mind that many carers remain out of sight of local authorities? To what extent do the Government intend to work with the voluntary sector to disseminate that information?
I also believe that the role of the NHS will be important. Unfortunately, when the guidance on the implementation of the 1995 Act went out, the section that was addressed to the NHS was fairly limited in its scope, yet the contribution that the NHS can make to carers can be considerable. For example, at the point of hospital discharge, GPs and community nurses are in an ideal position to notice stress or rapidly deteriorating health in carers and to let them know, when a user is referred for an assessment, that they too may be eligible for one. There surely needs to be proper co-ordination between health and social services in preparing the assessments to ensure that carers get the right support from the right people.
I should like also to raise a question about the Bill's financial effects. It is estimated that that there are about 1.7 million carers who provide over 20 hours of care per week. In theory, then, that is the number of carers who might be in a position to benefit under the Bill. Carrying out assessments for that number of people--or even half that number of people--will be no mean task. What estimates have been made of the likely costs of implementation, and is the Minister confident that they can be absorbed within existing local authority allocations? As he will be aware, few carers currently ask for an assessment, and the demands placed on local authorities therefore look likely to be significant as a result of this measure. None of us wants to see waiting lists building up. What inquiries have the Department of Health carried out to ascertain whether there are enough staff for this work?
I worry, too, about the operation of the direct payments scheme. I recently heard that there are many local authorities which have not even begun to implement the scheme under the 1996 Act. In fact the National Centre for Independent Living tells me that throughout England and Wales there are only 2,000 people who are actually receiving direct payments at the present time, a tiny proportion of the number who could. In Wales one is very unlikely indeed to be in receipt of a direct payment. If this is the case now, what hope is there for an extended scheme? I wonder if the Minister can say why there is no systematic advertising of direct payment schemes by the Department of Health, say, in the form of a leaflet giving relevant information.
There are areas of detail which I shall wish to cover in Committee. I shall not take up valuable time now in listing them. I wish only to look forward to future stages and to congratulate the noble Baroness on having brought the Bill to the House today. We wish it a speedy passage.
Lord Hunt of Kings Heath: My Lords, perhaps I may also start by thanking my noble friend Lady Pitkeathley for bringing forward this important Bill. As other noble Lords who have taken part in today's debate have said, few Members of your Lordships' House are better qualified to do so. I should also take this opportunity to pay tribute to my noble friend Lord Morris of Manchester. As the first Minister for disabled people, as the sponsor of the Chronically Sick and Disabled Persons Act 1970 and as a doughty champion of so many people in this country, we owe him a great debt of gratitude.
I pay tribute also to my noble friend Lady Andrews. I warmly congratulate her on the excellence of her maiden speech. Various Benches today have vied for her to come and sit with them. Fortunately, she is behind me; and there I hope she will stay.
I should also like to pay tribute to Mr Tom Pendry, whose efforts in the other place were absolutely tremendous. We owe him a great deal, and it is thanks to his efforts that we are discussing the Bill today. Rather like the Children (Leaving Care) Bill, which your Lordships' House considered only a few months ago, it is a Bill which I believe has the support of all noble Lords, and I consider it a privilege to be able to take part in our discussions on its passage through your Lordships' House.
This is an afternoon for tributes, and the noble Lord, Lord Rix, rightly pointed to his initiative with the short-term breaks Bill some years ago. His support for the cause of carers is acknowledged by all noble Lords.
The one thing about which we all agree is that carers play a vital role in the community and that society could not operate without them. That was, at heart, the reason for the establishment of a carers national strategy, which was aimed at empowering carers to make more choices for themselves and to have more control over their lives. It was the noble Lord, Lord Addington, who made it absolutely clear to us that we have to consider the needs of carers as individuals first and foremost. And there can be no doubt but that carers want and ought to have their positive contribution to society valued and acknowledged. This Bill achieves that by giving local authorities the power to provide services direct to carers to support them in their caring role, and by extending direct payment legislation to carers to meet their own assessed needs.
It is important that the Bill also empowers local councils to make direct payments to people with parental responsibility for a disabled child for services for the family. As a government we know that carers like to be as independent as possible in making arrangements for the care of their disabled children. This Bill will help them achieve a far greater level of independence than they have ever experienced before.
I also believe that the extension of direct payments to 16 and 17 year-old disabled children will offer them additional flexibility to meet their developmental needs. An extension of direct payments to that group
There are also particular issues surrounding the power to make direct payments to 16 and 17 year-old carers. We do not want to burden any children with inappropriate caring responsibilities. Local authorities will only offer direct payments to 16 and 17 year-old carers after giving full consideration to the interests of the child and if those are best met by giving them a direct payment.
I should also like to stress the point raised by the noble Lord, Lord Rix, that advocacy and support will be important to young people who are thinking about or receiving direct payments. We have debated many times in the past few months the concept of independent advocacy. I am glad to say it is a familiar one to local authority social services departments. Advocacy and support schemes are relevant to direct payment and are already in existence in local authorities with good direct payment schemes.
There is no doubt that the short-term break voucher schemes are a useful way of giving users and carers more flexibility in the timing and choice of the way additional services are delivered to the person cared for to give carers a break. In a sense, vouchers are an intermediate step or arrangement between direct payments on the one hand and the provision of local authority arranged services on the other. Vouchers may be exchanged at a time of the voucher-holder's choosing for the services the person cared for or the disabled child has been assessed as needing while the carer takes a break.
A number of questions have been raised in relation to the implementation of the Bill. In many ways that reflects the consensus that we all feel in terms of the principle of the Bill. But there are understandable concerns about its implementation. No doubt as we progress this Bill--rapidly I hope--through this House, we will come back to some of the more specific issues. However, perhaps I may refer first to the issue of charges.
We have debated charges a number of times recently. The Audit Commission report informed that debate. Noble Lords will know that we are looking closely at the whole issue of charging by local authorities. We intend to make an amendment to the Care Standards Bill to allow us to amend the 1970 Local Authority Social Services Act, which will allow us to establish statutory guidance to local authorities. I believe that that will provide a more satisfactory solution and enable greater consistency throughout the charging regime of local authorities.
I also acknowledge the point that my noble friend Lord Morris made about the definition of the word "intimate". He specifically asked me about how we propose to develop our ideas. I can assure him that we shall consult in some detail with disabled people about what constitutes for them an intimate service. I want to take this opportunity to assure noble Lords that local authority support for carers must not and will not become a tool to erode the hard won independence of disabled people.
I turn to a number of other issues that have been raised. My noble friend Lady Uddin asked about a number of statistics. I have to say that reliable statistics on young carers are not available. There is an indication that children, especially girls from some ethnic groups, are under more pressure to undertake caring responsibilities. As the noble Earl, Lord Howe, suggested, we will have better information as a result of the next census, which will cover all age groups, in 2001.
I very much share and accept the point made by my noble friend Lady Uddin about considering the particular needs of black and minority ethnic carers. For instance, we greatly value the work of the London Black Carers' Group in helping us to develop our ideas concerning strategies. I can assure my noble friend that we shall be very happy to consider any further suggestions that she may have for ensuring that, within the implementation process, we shall be geared up to the needs of carers from all ethnic groups in our society.
I share the point made by the noble Earl, Lord Howe, among others, that it is vitally important to ensure that appropriate information is available once the Bill has passed through the various stages and we have arrived at the point of its implementation. I shall be very happy to write to noble Lords with regard to how we intend to do that.
As a number of noble Lords have suggested, it is also important to ensure that the NHS plays its part. I believe that there are very positive overall signs in terms of relationships between the NHS and social service departments. Although there is still a long way to go in some areas, there has been a sea change in attitudes, upon which we clearly need to build. For example, I would like to encourage a greater development of community equipment stores. If we can do that, it would be a very great boon to people being cared for and their carers. We know that in some parts of the country where this has occurred a joint health and local authority service is being enabled to provide first-class services.
A number of questions have been asked about the cost of these measures to local authorities. Of course, the cost of these responsibilities has to be seen in the context of the overall allocation of resources which the Government are allocating to individual local authorities. I would also point out that the carers' grant of £140 million over three years is ring fenced. But, outside the specific grant for carers, it is for local authorities to allocate resources to meet local needs.
It is also worth pointing out that the Bill, while introducing a new power to local authorities, gives local authorities the ability to innovate with regard to how they support people who continue to live in the community by offering support to those who care for them. I am convinced that investment by local authorities in the provision of the support that carers want may well ensure that people being so supported may make fewer demands on local authority services in the future. Clearly, local government will have to
I take the point made by the noble Lord, Lord Rix, and by my noble friend Lady Uddin regarding those performance issues. Noble Lords will know that we have spent a good deal of time and energy on assessing how the overall improvement and performance of local authorities can be developed. This must be seen in the context of the enhanced role that we have given to the Social Services Inspectorate in the development of performance indicators, and in a much stronger performance assessment framework. I give way.
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