§ Order for Second Reading read.
§ 5.7 pm
§ The Parliamentary Under-Secretary of State for Health (Mr. John Bowis)
I beg to move, That the Bill be now read a Second time.
I hope that the House will allow me first to speak as the hon. Member for Battersea and to pay tribute to my predecessor but one, whose death has been announced today. Douglas Jay, more recently known as Lord Jay, represented my constituency—or most of it—for almost 40 years. Tributes will no doubt be paid for his work in government on other occasions, but today I should like to represent my constituents in saying that I know that he was held in great affection and respect in my constituency, and we shall miss him.
One of the principal aims of community care is to enable people to cope with their problems of disability or frailty so that they can remain in their own homes whenever that is feasible and sensible, and they wish to do so. Making that possible is the challenge to families, informal and formal carers, local, private, voluntary and public organisations and agencies.
Today, we are taking a further significant step down the road of responding to people's wishes and enabling them to lead as normal a life as possible. Direct payments are a natural progression in community care towards that aim, giving users more control and more choice. They put the people who need community care services in the driving seat and allow them to make important decisions about how their needs are met. We are adding dignity, independence and choice to care and support, and I believe that we shall have the support of the whole House in speeding the measure towards the statute book.
In line with our policies, local authorities have increasingly been involving the people who use community care in the planning and development of their services. Experience shows that this approach leads to more flexible and more appropriate services. We have also been listening to people who have been asking us to go further. They want to have more control over the money that is spent meeting their needs. Time and again, I have heard from people who have a disability, but also hold down a job or voluntary work and whose working lives are obstructed by the rigidity of a council service rota; or people who do not like to complain, but would really like a different range of menus from the meal service; or people who have responsible jobs, but are treated by the care workers as if they were rather tiresome and untidy children. They have no real independence, no real choice and no real dignity.
The Bill will change that. Local authorities will be able to give people in defined categories cash instead of services. Those people will be able to choose within the available resources how and when the services that they need will be provided. They will be able to decide from whom to buy services, or whom to employ to assist them in leading more independent lives, and they will manage directly the services that they receive.
373 Members of both Houses do not need me to extol the virtues of direct payments. I pay particular tribute to my noble Friend Lord McColl, who introduced a Bill on this matter in another place, and of course to my hon. Friend the Member for Mid-Kent (Mr. Rowe), whose Disabled Persons (Service) Bill sought to take us down this road. He and our then hon. Friend the Member for Stratford-on-Avon (Mr. Howarth) have continued to press hard for such a measure, and I am sure that they will both be pleased that we have been able to stride forward for the benefit of disabled people.
§ Mr. William O'Brien (Normanton)
What guidance will the Minister offer to local authorities regarding people who are receiving social benefits to ensure that those benefits are not impinged upon by the provision of direct payments? Does he intend to introduce regulations that will offer guidance on what local authorities can offer with regard to the needs of those requesting community care? Will he offer assistance on the schemes that may be adopted by local authorities?
§ Mr. Bowis
The hon. Gentleman tempts me to refer to a number of matters that I shall mention later. We will produce guidance for local authorities introducing the schemes and for the people who will be seeking to manage their own affairs through direct payments. He also mentioned the benefits system, and any necessary clarification on that will be forthcoming. Our intention is that direct payments should in no way change the situation of someone receiving direct services.
§ Sir Andrew Bowden (Brighton, Kemptown)
The House will welcome what my hon. Friend said about the right of independent living, dignity and choice. Can he assure the House that that will apply also to people aged over 65?
§ Mr. Bowis
My hon. Friend may know that our consultation on the precise eligibility criteria has just finished. One of the matters that we looked at was whether the eligibility should, in the first instance, be limited to particular categories of people. In so doing, we shall certainly consider whether passing a particular age should exclude a person from the schemes—again, I must say, in the first instance. I shall return to that point, and my hon. Friend may get a clear response later.
I was referring to the twins of the House, my hon. Friend the Member for Mid-Kent and the hon. Member for Stratford-on-Avon, who were pressing similar measures upon us. They will understand if I add that, even more importantly, the introduction of direct payments has been warmly welcomed by the people who will be most directly affected—particularly by disabled people who may receive payments, and by local authorities that may make payments.
Representatives of both groups were involved in a technical advisory group that helped us think through the issues as we worked out the details of the Bill. We are very grateful for their contribution, and look forward to drawing on their expertise again as we work on the guidance that we intend to produce. I should also like to thank all those who have responded to the consultation 374 exercise on the matters to be covered in both regulations and guidance. It is very important that we get the framework for direct payments right, and we are now carefully considering the responses.
Clauses 1 to 3 apply to England and Wales, while clauses 4 and 5 make corresponding provision for Scotland by adding new sections to the Social Work (Scotland) Act 1968. Clause 6 allows for this legislation to be extended to Northern Ireland by Order in Council using the negative resolution procedure. When the Bill comes into force, its power will be available to local authorities throughout the United Kingdom.
The Bill starts from the local authority's assessment of someone's needs under the existing law on community care. If it appears to the authority that someone may need community care services—whether that is a person to provide care, an adaptation, special equipment or any other service that the authority might provide—it has a duty to assess that person's needs. If it concludes that services are needed, at present it can generally either provide those services itself or purchase them from another agency. Under the provisions of the Bill, the local authority will in certain circumstances also have the option to make a direct payment to enable the individual to buy his own services.
The Bill does not impose on local authorities a duty to offer anyone direct payments instead of services. Local authorities will still have to decide the most appropriate way of meeting an individual's needs, but they will now have a new alternative to offer. Equally, no one will be forced to accept direct payments. People will be free to choose to continue to receive services instead. They could also receive a mixture of both cash and services.
Clause 1 and the Scottish equivalent in clause 4 enable the Secretary of State to specify in regulations which groups of people may receive direct payments. It makes sense to restrict the initial size of the client group for this new and largely untested development. That will enable local authorities to identify and address any initial problems while making direct payments on a limited scale, and the Government will be able to see clearly any adjustments that may be needed to the national framework. The Government think that this approach will give direct payments the greatest chance of being implemented successfully.
§ Mr. Archy Kirkwood (Roxburgh and Berwickshire)
The Minister will be aware of the different circumstances that apply north of the border, which is why clauses 4 and 5 are needed. He will also be aware that there are circumstances where, under the 1968 Act, Scottish local authorities can already apply some of the provisions in the Bill. Will he assure us that nothing in the Bill will further restrict the provisions that already apply north of the border?
§ Mr. David Hinchliffe (Wakefield)
I understand that physical disability will be the initial criterion used for eligibility. Bearing it in mind that disability does not come in neat packages, can the Minister tell us whether a person who may have learning difficulties in addition to a physical disability will qualify? Clearly, a number of people will not fit neatly into the definition that the Government appear to be offering.
§ Mr. Bowis
The hon. Gentleman is tempting me to prejudge the results of the consultation, and I will not do so. He is right, however, to suggest that a proposal was set out on which people could put their views, so that we could find out whether it was right or should be extended. It is fair to say that, if the younger physically disabled were to be the first category to benefit from the measure, people in that category with other disabilities or needs would still be eligible because they are eligible under that category. I hope that that is helpful.
§ Mr. Roger Berry (Kingswood)
Does the Minister acknowledge that it would be discriminatory to exclude large groups of disabled people from the provision? What conceivable reason can there be for denying local authorities the discretion to make direct payments to people over 65, or those with learning disabilities? The Minister is introducing another example of discrimination.
§ Mr. Bowis
Far from discriminating, we are trying to provide opportunities. It is a question of the pace at which the measure comes in. We must consider the results of the consultation, which has only just been completed. I can assure the hon. Gentleman that we shall be considering the results and, in due course, the proposals linked to the regulations will come back to the House, when we will have an opportunity to study all those matters.
Our consultation paper set out a number of alternatives for specifying the eligible group and asked for views. It explained that the Government are inclined to the view that, in the first instance, eligibility should be limited to adults aged under 65 years, who are physically disabled and able and willing to manage direct payments, with help if necessary. We made it clear that that group would include people with physical disabilities who also had some other form of impairment, which answers the question of the hon. Member for Wakefield (Mr. Hinchliffe). It would also allow people who have been receiving direct payments before the age of 65 to continue to receive them when they reach that age, and I hope that that answers my hon. Friend the Member for Brighton, Kemptown (Sir A. Bowden). There would not be a cut-off once people reached that age.
No final decision has yet been taken on the eligible group. In particular—this has been raised on a number of occasions, not least in another place—we are committed to considering carefully whether all adults under the age of 65 with learning disabilities who are able and willing to manage direct payments, with help if necessary, should be eligible. I hope that that also answers the hon. Member for Wakefield. We have received more than 300 responses to the consultation from throughout the United Kingdom and we are considering what has been said on the question. I look forward to hearing the views of hon. Members, not least in this debate, before reaching a final decision.
Whatever we decide, the reason for selecting an eligible group is to keep direct payments on a manageable scale in the first instance. We are making no assumptions about who might or might not be able to manage. We shall keep the eligible group under review once direct payments are available. Specifying eligibility in regulations will, of course, allow us to adjust it in the light of experience without the need to amend primary legislation.
§ Mr. Peter Thurnham (Bolton, North-East)
How many people are included in the group of those who are 376 immediately to be considered eligible and how many will be left out on grounds of either mental handicap or being over the age of 65?
§ Mr. Bowis
It is difficult to answer that question, but if one based the calculation on the number of households in which some form of home help is provided for people in the under-65 category who have a physical disability, one would be talking about something like 30,000 households. I think that the figures for learning disability would be around the 4,000 mark. I hope that my hon. Friend will not hold me precisely to those figures. I am giving round figures to give him some idea of the numbers. He will know the overall figures for people with disabilities. One then has to assess the number who would want, and feel able to have, a direct payment, which is more difficult to do. I hope that that helps my hon. Friend.
I shall briefly explain how direct payments will work. Following assessment of need and the person's decision to ask for a direct payment, the local authority will decide how much the direct payment should be. It will not be able to set direct payments at a level that is insufficient to meet a person's assessed needs. Nor should it set direct payments at a level that it knows is less cost-effective than the services that it would otherwise arrange. Equally, it still has a responsibility to ensure value for taxpayers' money. If it costs someone £200 to buy the service that he needs, the local authority cannot arbitrarily decide to give him only £100. If the person could get a perfectly satisfactory service for £200 but prefers a service that costs £300, there is no reason why the local authority should be required to provide the extra £100.
In setting the level of payments, the local authority can also take into account people's financial circumstances. Just as the authority has discretion to charge for its non-residential services, it has discretion to consider whether someone can afford to make a financial contribution to the cost of his care. The authority is not required to do that; it is given the discretion to decide whether, and if so how, to ask someone to make a financial contribution to the cost of his care. The Government intend that people who receive direct payments should be treated no more or less favourably than people who receive services.
The aim of direct payments is to give people more choice and control over services that they would otherwise receive from local authorities, not to replace existing support given by families and communities. We propose to make regulations specifying certain categories of people who may not be paid to provide care using direct payments. That is the purpose of clause 1(4).
The consultation paper proposed that that category should include a spouse, partner or close relative living in the same household. In addition, it proposed that statutory guidance should say that local authorities should not make direct payments where the recipient intends to contract with close relatives who live elsewhere, or other people living in the same household. There would, however, be discretion to make exceptions to the rules set out in that guidance in exceptional circumstances, where there was no suitable alternative.
Clause 1 also contains a power to make regulations to limit the length of time for which direct payments may be used to pay for residential accommodation. That will allow local authorities to make direct payments for respite 377 care, but not for permanent residential care. We suggested the maximum period should be four weeks in any 12-month period and here, too, we are considering the responses.
The final provision under clause 1 enables the local authority to require direct payments to be repaid where it is not satisfied that they have been spent properly.
Clause 2 and its Scottish equivalent in clause 4 remove the possibility that a local authority that makes direct payments might also have to arrange the services unnecessarily, but the local authority will remain the carer of last resort.
Clause 3 is a consequential amendment to include direct payments in the list of social services functions. Importantly, that means that people receiving direct payments will have the same access to the complaints procedures as service users and that the Secretary of State will have the same powers to intervene should a local authority fail to carry out that function properly as he does in other cases. An equivalent clause is not needed for Scotland as the Scottish provisions will form part of the Social Work (Scotland) Act 1968, which already provides for a complaints procedure and other functions—that answers the question of the hon. Member for Roxburgh and Berwickshire (Mr. Kirkwood).
I am confident that many disabled people who have been asking us to allow them to manage their own care will cope well with the responsibilities of doing so. Some people, however, may benefit from help and support to enable them to do so. The Government intend to issue practice guidance—that is the guidance about which the hon. Member for Normanton (Mr. O'Brien) asked—to encourage local authorities to provide support to people who receive direct payments. We are also considering the possibility of producing a guide to managing direct payments for the people who receive them.
The Bill is an imaginative and innovative measure, which has the potential to make a major difference to many people's lives. It will enable people who are on the receiving end of services to take charge and manage their own care. They will be able to decide for themselves, when, how and by whom services should be provided. It has been welcomed by people with disabilities and by local authorities, and I commend it to the House.
§ Mr. Tom Clarke (Monklands, West)
I thank the Under-Secretary for his most gracious tribute to the late Douglas Jay. We share the hon. Gentleman's sadness. As a former young socialist, I remember Douglas Jay. At one point I actually disagreed with him. He suggested in the Labour journal "Forward" that we should change the name of our party. However, I forgave him later when he joined the Harold Wilson Government and was responsible for an excellent regional policy, from which Scotland as a nation, and many other regions of Great Britain, benefited and which we shall always remember.
I thank the Under-Secretary, too, for the outline that he gave us—not that I necessarily aim to praise him or his policies. However, there is no difference between us over whether there ought to be legislation.
I must suggest to the Under-Secretary that he keep an eye on Ministers in other Departments. Before we begin to consider the issues in this debate, he should watch his 378 back. Just half an hour ago, we found in the Press Gallery a press release issued by the Minister for Social Security and Disabled People explaining that there would be much consultation on the Disability Discrimination Act 1995. He seems to be concerned that the Under-Secretary, for whom we have enormous regard, will make real strides on disability. In the interests of the hon. Gentleman's reputation, I am worried about that, but I am even more worried about his colleague, who ended his press release, which I have read in the past 25 minutes, by saying:The document is also available in braille, on audio tape and in Welsh.I am delighted to hear that. There are other parts of the United Kingdom that might welcome other versions of what the Government have to say.
The Bill offers the possibility, but thus far only the possibility, of a significant step forward for thousands of disabled people. There are signs that Parliament has come to recognise the importance of the 6.5 million disabled people and 7 million carers. On average, each hon. Member represents about 10,000 constituents in each of those categories. More than one in five of the British population have a direct, personal interest in how we legislate on this subject.
In welcoming the broad principle behind the Bill and laying out the Opposition's criticisms and concerns about some of its aspects, I should recognise the extent of cross-party agreement on disability that we have enjoyed in the House and also its limitations. The Minister was right to pay tribute to those such as my hon. Friend the Member for Stratford-on-Avon (Mr. Howarth), the hon. Member for Mid-Kent (Mr. Rowe) and hon. Members from other parties who made contributions in the fight for direct payments. They, too, would welcome the behind-the-scenes contribution of the right hon. Member for Chelsea (Sir N. Scott). This must be a happy day for him.
It is worth noting that the Labour party has enjoyed broad and effective support from other parties in Great Britain for progressive legislation on disability. It is true that there remain on the Government Benches a number of hon. Members who have supported Labour initiatives on the matter in the past, although the number has diminished with every passing defection from their ranks. That, too, we welcome. That does not mean that the Government and the Opposition are entirely at one on the Bill.
The Government have a record of coming late and reluctantly to recognise the strength of the case that disabled people make for legislative change. We welcome the introduction of this measure unreservedly, but its shortcomings offer further evidence of the Government's less than whole-hearted commitment and explain the frustrations of many disabled people, organisations of and for disabled people, and Jane Campbell, who may be listening to our deliberations and who has made such a wonderful contribution to our achievements on disability.
We and the Government start from opposite principles. We start from the position that it is right to use legislation to end social discrimination against those with mental or physical impairments. They start from the position that legislation should be introduced only when there is no alternative and that it should go no further than the minimum required. That is why the Government have chosen to introduce a good Bill but intend to hamper its 379 fulfilment by tying it down with bad regulations. To prevent that, we will lay down today the matters in respect of which we believe the Bill can and should be changed.
Disabled people have long campaigned for greater control over the design and delivery of their care. They have argued that they are better placed than anyone else to understand what they need and to choose the levels and nature of personal assistance that will free them from the constraints of disability. They are right. That is why the campaign for direct payments has been supported by Labour, as was demonstrated by our colleagues in another place. We recognise that for direct payments to work, they must have the support and commitment of local authorities. Disabled people's organisations have generally recognised that, too.
The Under-Secretary said something about the historical context in which the Bill has been introduced. It is more than 20 years since the first group of disabled people persuaded their local authority of the merits of giving them direct control over their care by making cash payments. That initiative was followed by the first establishment of a centre for independent living through which disabled people in receipt of cash payments were enabled to provide advice to others who were considering going down the same route. It is eight years since the setting up of the original independent living fund, under which social security resources have been used to assist the growth of disabled people's autonomy and control.
The Government have recognised that the demand for cash payments has outstripped existing legal provision. That is why we have the Bill. Several hundred disabled people benefit from the initiative shown by up to 60 local authorities that have found indirect ways of supporting independent living through third-party agencies. The Minister's colleagues in the House of Lords said that it was not the Government's purpose to make legal such schemes where their legality was in doubt. I regret that Ministers take that approach. I do not know whether the Minister will confirm that approach when he replies.
It is the responsibility of local authorities to ensure that their actions are within the law, but it would be a great pity if the opportunity provided by the Bill to assist them in so doing were not taken. I know from the experience of the social work authority that covers my constituency—which, until the end of the month is Strathclyde region's social work department—that much can be done within the limits of existing law to provide cash payment to disabled people able and willing to take responsibility for management of their care. What is true of several social work departments in Scotland is also true of many social service authorities in England and Wales. However, it is not always clear beyond peradventure that such schemes are on a sound legal footing. I hope that that will be clear by the time the House has concluded its consideration of the Bill.
It is six years since the idea of direct payments was first mooted in this place and we welcome the fact that it is now possible to move forward and make that a reality. It is not a heavy parliamentary Session in terms of legislation brought forward by Ministers—we all know the reason for that—but it will not be long before we see the kind of busy parliamentary schedule that follows the election of a new Government. Along with millions of others, I look forward to that day with great anticipation.
380 In light of that prospect, it is even more important to get the Bill right. It is difficult to envisage another comparable opportunity to address the matter through primary legislation in the immediate future. That is the first requirement that the Bill fails to meet. By saying that they will impose restrictions on the operation of direct payments which will leave the legal status of some existing third-party schemes in doubt—the Minister did not assist us in responding to the intervention by my hon. Friend the Member for Wakefield (Mr. Hinchliffe)—Ministers are neglecting their best opportunity to clarify, and thereby strengthen and improve, the law.
§ Mr. Bowis
It might assist the hon. Gentleman if I confirm at this point that nothing in the Bill will make illegal any scheme that local authorities and their legal advisers have deemed to be sufficiently legal to put into practice. Schemes that are in place now should not be affected. We are not seeking to undermine such schemes; they may continue. Local authorities must always check the legality of schemes with their legal advisers. I hope that the hon. Gentleman is not suggesting that illegal schemes are operating at present.
§ Mr. Clarke
I am extremely interested in the Minister's comments; we shall study his words very carefully. However, his remarks seem to be somewhat inconsistent with the response that he gave to my hon. Friend the Member for Wakefield, who raised the specific issue of people with learning difficulties and those aged over 65.
§ Mr. Bowis
The hon. Member for Wakefield (Mr. Hinchliffe) asked me whether someone who was young and physically disabled—such a person would qualify under the eligibility criteria on that basis—and who also had a mental illness or some other type of disability or need would be eligible. I said that that person would. It has nothing to do with any current schemes.
§ Mr. Clarke
I am grateful to the Minister for that intervention, but he has not addressed the issue of people with learning difficulties and those aged over 65 who benefit at the moment from indirect payments that are paid to them by a third party but whose future is now in doubt because, thus far, the legislation does not spell it out.
That brings us to the central problem with the Government's approach. In the consultation paper that they produced in January, Ministers made clear their preference for limiting eligibility—I shall quote carefully from that paper, as I wish to be fair to the Minister and to the Government—toAdults who are physically disabled (including people with sensory impairments), who are under the age of 65 and are able and willing to manage direct payments (with help if necessary). This does not exclude people with both a physical disability and another condition (such as learning disability). Those aged 65 or over who began to receive direct payments before age 65 could continue to do so after that age".I shall cease quoting at that point because it is very important to register what the Government have said. The consultation document justifies that preference on the basis thatRestricting the size of the eligible group will allow local authorities to test out direct payments on a limited scale, identifying and addressing any problems before the Government considers whether eligibility should be extended to others who are able and willing to manage direct payments".381 A case can certainly be made for testing direct payments: we recognise the value of a flexible approach there. However, the Government have gone about it in the wrong way. Ministers clearly accept the view that some local authorities are better placed than others to run direct payment schemes as they are already providing cash payments to disabled people through third parties, as I mentioned earlier. That is the basis of the Government's argument for making direct payments discretionary. Under the Bill, local authorities are not obliged to provide direct payments if they do not believe that they are ready and able to do so.
Some disability groups believe that access to direct payments should apply throughout the country and that councils should be under an obligation to make such payments available. We have a good deal of sympathy with that point of view. We believe that the services and the opportunities available to disabled people should not depend on where they happen to live. At the same time, we have listened to local authorities.
§ Sir Andrew Bowden
I refer the hon. Gentleman to the question whether local authorities should have the discretion to fulfil the wishes of local people. I think that organisations and individuals will bring such strong pressure to bear on local authorities that they will have no choice other than to operate the scheme. There are very influential disabled groups in Brighton in my constituency, and woe betide Brighton council—or any other local authority in the area—if it does not implement the full provisions of the Bill.
§ Mr. Clarke
I am delighted with the hon. Gentleman's intervention. As I proceed with my speech, he will find that we agree absolutely on that point.
We have listened to local authorities that have said that they want direct payments to be payable at the discretion of the council in question. We have also considered the evidence of a recent national survey—which I believe the hon. Member for Brighton, Kemptown (Sir A. Bowden) will welcome—which was conducted for the British Council of Organisations of Disabled People by the Policy Studies Institute. It found that more than 90 per cent. of responding authorities would make direct payments if they were confident that legislation permitted them to do so.
Direct payments are likely to be so successful and efficient that we believe that all local authorities will want to join the system within a very short period. My hon. Friend the Member for Darlington (Mr. Milburn) will explore, in winding up today for the Opposition and in Committee, what can be done to avoid a patchwork of provision in different parts of the country.
If Ministers are to sustain the case for a discretionary scheme, they must follow the logic of that case to its proper conclusions. They propose to exempt those authorities that are least able to undertake direct payments from any immediate obligation to do so. However, at the same time they are preventing those authorities that are best placed to undertake direct payments from providing them to all those who are able and willing to take them up.
I have already mentioned the Opposition's concern about Ministers' reluctance to take the opportunity to clarify the position of existing third-party schemes—some 382 of whose recipients include people aged over 65 and those with learning disabilities but no physical disability. Associated with that is our concern that the freedom of all local authorities to provide new cash payments will be inhibited by unnecessary exclusions of those aged over 65 and those who are not physically disabled. If it is right that local authorities should have the discretion to decide whether to have schemes and if the professional judgment of local authority social work and social services staff is the right basis for making decisions about individual cases, local authorities should have the discretion to decide whether disabled persons are willing and able to manage their own care and should meet with a positive response.
That view has overwhelming support, which will be borne out by the consultation process when Ministers are ready to publish the findings. For example, the British Council of Organisations of Disabled People said:Restricting eligibility is unnecessary and would be contrary to all principles of equality.The council pointed out the difficulty created for local authorities in making judgments in relation to different kinds of disabilities. It also drew attention to the problem of being obliged to turn down people who are otherwise qualified and capable of receiving direct payments because of an exclusion imposed on the council by central Government regulation.
Equally, local authorities have not welcomed the Government's chosen method of limiting demand on the new schemes. The Association of County Councils and the Association of Metropolitan Authorities, representing councils responsible for the implementation of this measure, have pressed for the removal of what they regard as tight national constraints. The Disablement Income Group has outstanding experience in this field and has pointed out that one third of its clients of the original independent living fund were over 65. It points out that there is no logic or common sense in using retirement age as a boundary in limiting the right or assessing the ability of someone to make choices and to take control over his or her personal care.
I could go on, but I would have great difficulty in finding anyone—those representing disabled people, local authorities, social service professionals or care providers—who agreed with the Government's approach of blanket exclusions of whole categories of disabled people. This is a serious issue because, in principle, such blanket exclusions amount to discrimination. In practice, they prevent the further development of best practice, place artificial limits on the growth of direct payment schemes and run the risk of creating ludicrous anomalies. I have quoted the Government's preferred option from their consultation paper—which I shall repeat, for the sake of hon. Members who may have doubted that they heard me correctly:This does not exclude people with both a physical disability and another condition (such as learning disability).I refer to the hypothetical case of three disabled people who are seeking to take advantage of the opportunity to receive direct payments: one meets the medical definition of physical disability; another has learning disabilities; and the third has both physical disabilities and learning disabilities. Under Labour's approach, each person would be assessed on an individual basis and would be eligible to receive direct payments if he or she were found to be able to and willing to manage his or her care.
383 Under the Government's approach, the individual with a learning disability but with no physical disability would be automatically disqualified from consideration as the Bill now stands. The individual with both physical impairment and learning disability would qualify to be considered. That is surely an anomaly, and one that was never satisfactorily explained in another place or in the Minister's speech today.
§ Mr. Bowis
There is nothing in the Bill that restricts anything. Regulations will outline how the system should be put in practice to begin with; once the initial implementation has been made effectively, the House will, with the minimum of inconvenience, bring forward regulations to extend it further.
§ Mr. Clarke
The Minister cannot have it both ways. The Government's consultation document makes it perfectly clear that the Government intend to exclude people with learning difficulties. We have had consultation and we have a Bill, but we have been told absolutely nothing about the Government's views on or responses to the consultation document. I listened to most of the debate in another place and the Government would not give one inch on that issue—the Minister ought to worry that that may be the instruction to him as we proceed with the other stages of the Bill.
§ Mr. Berry
What would have happened if the Minister had suggested that these provisions should apply to people who have learning disabilities but not to those who have physical disabilities? Is not the obvious answer to that question a reflection of the fact that the Bill, in the light of the proposal that will come forward in regulations, is systematically discriminating against people with learning disabilities—they are being treated like second-class citizens?
§ Mr. Clarke
My hon. Friend has enormous experience in these matters, and he has got it absolutely right. Until the Government offer us a different explanation of their approach to each individual who is assessed, the Minister will have a great deal to do in the House and in Committee to clarify the issue.
The situation is further complicated by the intention to exclude those who are over 65. However, more anomalies will arise along these lines when the issue of what kind of disability a person has is crossed with the issue of whether the person is over 65 when first seeking a direct payment. No doubt, the Government's proposals will create anomalies and fly in the face of the Government's support for local authority discretion. They have missed the opportunity to have a genuine piloting of the new scheme.
If Ministers are really concerned to limit provision to the capacities of local authorities to meet demand, they should give more, not less, discretion to local authorities. That is precisely what Labour Members argued in the House of Lords. My colleagues in another place made the case against blanket exclusion on principle, and went so far as to offer the Government a compromise position, whereby Ministers could ensure that only those councils most experienced in cash payments could offer them to those with learning disabilities or to those over 65. In that way, the majority of councils would have to live with the Government's blanket exclusions for only a year or two, but those that were already geared up for making direct 384 payments could do so right away if they could satisfy Ministers that they knew what they were doing. That compromise was offered to Ministers in another place, but they were not prepared to take it. I hope the Minister says why his colleagues in another place rejected that compromise and whether he is prepared to accept it or why he is not prepared to do so.
Today, the Minister has been unable to say what conclusions he has reached as a result of the consultation exercise. It is a great pity that this legislation has been rushed and that it began in the wrong place at the wrong time. Members of the House of Lords found themselves considering a Bill without having had sight or knowledge of the results of the consultation with the interested parties—that is totally unacceptable. In spite of the protests of noble Lords, the Government insisted on completing the House of Lords stages of the Bill before the consultation was completed—never mind the findings being published.
Proper parliamentary scrutiny of the measure would have been assisted had the Bill been introduced in the House a week or two from now. That would have allowed the Government to publish their conclusions after consulting interested parties. The House would then have been able to consider the Bill with full knowledge of the relevant facts and the House of Lords could have played its proper role of reviewing the legislation after it had been considered by hon. Members.
Instead, the Bill has completed half its parliamentary consideration and all we know of Ministers' intentions is what their preferred options would be. We do not have firm commitments on the contents of regulations and guidance on which the Bill is heavily based. It appears that their preferred options remain the wrong ones. They are too cautious, too conservative and too unwilling to learn the logic of local authority discretion and to permit different authorities to progress at different speeds, yet they continually talk about choice.
I focused on the blanket exclusions that Ministers intend to put in regulations, but that is not our only problem with the Government's intentions. Ministers want to maintain the distinction between formal and informal care, and we agree. We accept that direct payments must not result in making informal care and support structures provided by family and friends into formal paid employment; few disabled people would want it to work that way. So we recognise that it is important to avoid the danger of disabled people or their carers being locked into such a relationship against their will.
Again, the Government's intentions, as outlined in the consultation paper, go beyond what is necessary to achieve those ends. They propose to place a general prohibition on the employment not just of members of the immediate family within the same household but of all members of the recipient's extended family wherever they live. It makes no sense to treat in-laws or the partners of nieces and nephews in the same way as a husband or wife living in the same house.
The Government's approach to the measure is clear. They have at long last conceded that direct payments work and that the individual life styles of disabled persons and elderly disabled persons can be met by the services that local authorities provide. However, the Bill, which we all welcome, diminishes the impact of direct payments by its approach. It represents a dilution of the measures that the Government promised and excludes people with learning difficulties and those over 65.
385 Happily, the Bill, which I hope will receive a Second Reading tonight, will be considered in Committee where there will be a thorough examination of its contents. In due course, it will return to the House for consideration and, one would assume, Third Reading.
Opposition Members regard as most important the views of disabled people in a pluralist society. In that spirit, I welcome the Bill, but I give the Minister notice that we shall examine everything that is proposed so that we have a true, progressive and forward-looking development of care in the community.
§ 6.3 pm
§ Sir Nicholas Scott (Chelsea)
I thank the hon. Member for Monklands, West (Mr. Clarke) for his gracious remarks earlier. We understand that it is the duty of the Opposition carefully to examine legislation and other Government proposals, but the hon. Gentleman made quite a meal of his objections today. The vast majority of hon. Members will welcome the Bill, introduced by the Under-Secretary of State for Health, my hon. Friend the Member for Battersea (Mr. Bowis), who deserves congratulations. Having been through part of the process some years ago, I suspect that some of the constraints that may be apparent in the present proposals may have come not from his Department, but from another Department on the other side of Whitehall—an experience that I frequently had during my time in office.
I certainly welcome the Bill, and I shall briefly explain to the House why. We may have some reservations about the way in which regulations may put constraints on the operation of the Bill. It will be up to those of us who take a close interest in these matters to keep a careful eye on them. I hope and trust that the scheme proposed in the Bill will expand and develop in future years, as did the independent living fund, which was launched in a modest way and then grew at a tremendous rate over the years of its existence. That may have been a cause for concern in the hearts and minds of those who keep the books, which may have had an impact on the plans of my hon. Friend and his colleagues.
I cannot claim direct responsibility for the ideas contained in the measure, but perhaps I can claim some grandparental responsibility, because the independent living fund was the precursor and the proof that such an approach to cash payments was a feasible way of meeting the needs of disabled people.
It is worth recalling that when we proposed the independent living fund, virtually all the organisations of and for disabled people were hostile to it. The Disablement Income Group was almost alone in supporting it. Pauline Thompson, its director, showed great courage in responding to and rejecting the opposition and complaints of many other organisations. It enabled us to launch the independent living fund and make it a growing success over the years. Other organisations tended to stand aside.
The Disablement Income Group has done a great deal to encourage the spread of third-party schemes, which play an important role. I doubt whether there are any legal problems, because I cannot think that any local authority would have launched such a scheme without taking careful legal advice from its own legal advisers, the town clerk and others. The schemes have not been challenged, so my 386 suspicion is that they will all turn out to be soundly legally based and could provide a pattern for provision under the Bill.
The success of the independent living fund has undoubtedly shown that disabled people can be trusted to use the power given to them by such an approach to control their own lives. Before the independent living fund—and the practice continues in many parts of the country—disabled people had the choice between institutional care and services provided by some local authorities that said, "We shall get you out of bed at 10.30 in the morning and you have to go to bed at 4.30 in the afternoon, as that is the only way we can fit you into our pattern of provision." Disabled people do not want that. They want to be empowered to control their own lives and to make their own choices about their life style and the pattern of their activities. Cash payments have made that possible for thousands of disabled people over the years. I am delighted that the Bill will extend and develop that concept.
By 1993, when the original scheme was replaced, some 23,000 disabled people had benefited from the work of the independent living fund. That in itself is a tribute to its success.
In summary, inadequate statutory provision by local authorities for all those people was replaced, enabling them to make their own choices about their lives. The other important aspect of cash payments and the way in which the independent living fund, third-party schemes and the new schemes will operate is that they are between 30 per cent. and 40 per cent. cheaper than the provision of sometimes inadequate services by local social services departments.
Of course, some disabled people require not only cash to buy services for themselves, but support and guidance on how to deploy the resources with which they have been provided. I was particularly grateful to the Minister for making it clear that the Government will play a part in the provision of that guidance and support. I hope that they will stay in close touch with the Disablement Income Group, which has already produced two excellent documents on how people can purchase packages for personal care. If the Government stay in close touch with that organisation, they will not go far wrong.
The Government produced some advice under the old scheme, and they are prepared to play their part in the new arrangements. Of course, books and pamphlets can help, but I hope that the Government, in addition to such advice and support, will be able to encourage, through local authorities, the development of local support groups of disabled people and their carers. Those groups could develop plans locally, to enable disabled people to make the best possible use of the cash help that they receive through this system, by sharing their experiences and providing advice and help to those who are contemplating accepting cash-based services rather than opting for the pattern of social services provision. They will require help in developing ideas on how to recruit care assistants, how to cope with payroll problems and on the other little detailed matters in relation to employing care assistants, which will enable them to live a full life.
Direct payments have substantial advantages over present provision. As I said, they are cheaper to administer and cheaper for the local authority to provide. I very much hope that schemes that will be supportive of disabled people will develop throughout the voluntary sector.
387 I rejoice that the Bill has come before the House. I do not mind if I have to limit my rejoicing slightly because of some of the scheme's constraints, as I believe that, as it is developed, it will increasingly become a common pattern across the country.
I should like to put three points to my hon. Friend the Minister. The first is that, where there is real local demand for the service, there ought at least to be a presumption, if not an obligation, that local authorities should have to provide schemes that are cash-based—in addition to or in replacement for the social services schemes that are currently the common pattern.
The second point is that the payments of cash should normally be made directly to disabled people. I accept that that may not always be possible or appropriate, but I believe that the normal pattern should be that payments are made to them. I was slightly worried by the provision in clause 1(4), whichallows the Secretary of State to specify in regulations categories of people who may not be paid to provide a service using direct payments.I hope that that was not meant to prohibit a disabled person's relative from receiving cash in order to provide support to him or her. I do not know what categories the Secretary of State or the Minister has in mind, but I should be very disappointed if that prohibition were to include relatives.
§ Mr. Bowis
The purpose of that provision is to preclude payment for services along the lines mentioned by the hon. Member for Monklands, West (Mr. Clarke), not to preclude people receiving payments on behalf of the individual, if that is what the individual wishes.
§ Sir Nicholas Scott
We shall need to look carefully at the regulations when they come out, to ensure that they cover that point.
The last point that I should like to make is that the payments of cash to disabled people should, when calculated, provide not only for the actual cost of the provision of care, but for matters such as national insurance, statutory sick pay and insurance, which are necessary for a comprehensive and effective package.
I wish the Bill well and congratulate the Government on introducing it. I hope that, as matters progress, the concerns that I and other hon. Members have expressed about the scheme's future can be answered.
§ Mr. Alfred Morris (Manchester, Wythenshawe)
I want, first, to thank the Minister for his clearly heartfelt words, which could not have been more felicitously chosen, about the life and passing today of Douglas Jay. For many years, Douglas was my close colleague in this House, and I kept in touch with him after he departed for another place. There are still some right hon. and hon. Members who will remember just how closely at times I worked with him. They will know how very moved I am by his death. I loved his humour and benefited much both from his learning and parliamentary skills. I mourn his passing and will ever cherish his memory.
It is, of course, a pleasure for me to follow my hon. Friend the Member for Monklands, West (Mr. Clarke) in this debate, and I pay warm tribute to the depth of his concern to improve the Bill in ways that disability 388 organisations want to achieve. At the same time, I am delighted to see by his side on the Front Bench our good and hon. Friend the Member for Paisley, South (Mr. McMaster), in pursuance of his abiding commitment to the cause of extending choice and enhancing the freedom and independence of disabled people.
The intensity and extent of interest in the Bill among disability organisations is demonstrated in all the helpful briefing we have had from them. There should be a word of gratitude also today for organisations which, while they may not have lobbied the House in recent days, were very much involved in the earliest campaigning for direct payments like, for example, the Association of Disabled Professionals, who, five years ago, on 21 March 1991, met the then Secretary of State for Health to press for a nationwide scheme of direct payments. Their concern then, like mine in this debate, was to quicken the pace of progress from paternalism to partnership in addressing the problems and needs of disabled people.
Five years ago, direct payments were being made to disabled people only by a few pioneering local authorities. The fear that they were acting illegally prevented other councils from following suit: in their areas disabled people had to rely for help with personal and domestic tasks on whoever the local authority sent and, as the right hon. Member for Chelsea (Sir N. Scott) said, at times that best suited the council. The people sent to help would only do what they had been trained to do in the way that they had been trained. Often this did not meet the real needs of the disabled person and was not, therefore, to her or his liking. But it was Hobson's choice. Either they docilely accepted what was organised for them or they were shunted into residential care.
With direct payments the few disabled people who received them were able to employ helpers of their choice at times that suited them and in a way that they wanted. In short, direct payments helped disabled people to regain some control over their own lives. That is why the Community Care (Direct Payments) Bill, which has its origins in that meeting five years ago, has been so widely welcomed by disabled people. Welcome though it is, however, there are three areas in which I hope it will be improved.
First, there is the Government's proposal initially to allow only physically disabled people below the age of 65, including those with sensory impairments, to receive direct payments. That is wrong and I hope the House will insist that people with learning difficulties should be included from the outset. Only to include people with learning difficulties if they also have a physical or sensory impairment, as the Government propose, is hardly logical and will be difficult to justify in practice when dealing with real people in their homes. To distinguish between physically and sensorily disabled people on the one hand and people with learning difficulties on the other means singling out one group for special treatment thus creating a class of favoured disabilities, which is as distasteful to most disabled people as I am sure it will prove unacceptable to this House.
I turn now briefly to the proposed age bar. To exclude people from direct payments if they are over retirement age smacks, some might say reeks, of unfair discrimination. It presumes that chronological age is the main determinant in measuring need; but that is demonstrably untrue. Of course, the truth is that discriminating against elderly disabled 389 people by excluding them from direct payments is about keeping costs down. It has nothing whatever to do with logic or fairness.
Ideally direct payments should be payable to all adults who are able and willing to manage them, with some help if necessary and without age limit. I believe that local authority staff with direct contact with individual disabled people are in the best position to decide who to include in the scheme. Under the terms of the Bill, local authorities are to be allowed to refuse direct payments to any individual providing they act responsibly and reasonably in doing so. But why not let them act responsibly and reasonably in deciding who to include?
The second area for improvement to the Bill relates to the direct payment itself. Two issues arise here. One is that of ensuring that direct payments will in fact buy what the disabled person has been assessed as needing. Leaving aside the question of a contribution from the recipient, the direct payment should cover in full the real cost of securing the agreed service. In the case of an agency providing the service, the payment should allow the agency's staff terms of employment similar to those available to local authority staff. If the payment is used directly to employ a helper, the payment should allow the recipient to fulfil all her or his duties as a good employer.
In assessing how much a service provided by a local authority costs, the authority should ensure that its total cost is calculated. This should include all overheads and supervisory and administrative staff costs. Otherwise the comparison between direct payments and in-house costs relating to individual clients could result in direct payments becoming a means of cheapening the cost and reducing the quality of providing essential services. It is extremely important to safeguard the disabled person against that happening. Also very important is the Government's proposal for local authorities to allow individuals to supplement whatever they receive as a direct payment from their own resources. In all such cases, however, local authorities should not be allowed to reassess what the individual can afford and then demand an increased contribution.
As Ministers know, there is already widespread concern about the failure of some local authorities to understand their legal duties to provide services for disabled people, about which I questioned the Health Secretary on 29 February. My parliamentary question asked himif he has now considered the implications to local authorities of the High Court's decision in relation to Gloucestershire county council's refusal to restore care services to over 1,000 disabled people in the county; and if he plans to issue further guidance to local authorities on the effect of section 2 of the Chronically Sick and Disabled Persons Act 1970 following the High Court's decision",to which the Minister's reply was:I have no current plans to issue further guidance on this matter."—[Official Report, 29 February 1996; Vol. 272, c. 695.]That reply was not well received by disability organisations that have been in touch with me since last Thursday and I hope that it will be urgently reviewed by the Secretary of State. Very clearly there is need now for clear further guidance to be issued.
The other issue relating to direct payments is that of means testing. It seems generally accepted by the Government and organisations of disabled people that it 390 will be essential to ensure that local authorities apply the same test of means for direct payments as they would apply for their own services. Allowing different means tests to be applied would enable a local authority to sway the decision of a client, either towards their services or towards a direct payment depending on their political proclivities. This would be manifestly wrong, but I believe it could happen unless, in addition to the guidance which the Government propose under section 7, the Bill's wording in relation to the assessment of a contribution is identical to the wording used in connection with the assessment of a contribution towards local authority services in section 17 of the Health and Social Services and Social Security Adjudications Act 1983, ("reasonably practical for him to pay").
Finally, the third area for improvement of the Bill relates to who a disabled person can pay to provide the help that she or he needs. At present, the Government want to limit those that can be paid. The idea is to avoid what they describe somewhat euphemistically as creating pressure for informal care to be put on a formal contractual basis—as Baroness Cumberlege expressed it in another place on 15 January. To achieve this the Government intend to exclude all so-called relatives living in the same household.
But I have serious worries concerning lodgers and others and the wording the Government use in referring to people in the same household. As paragraph 24 of the consultation document explained, such people are not to be paidunlesstheyare people who have been specifically recruited to be live-in personal assistants.This would preclude a person who has someone other than a close relative living in the household—for example, a lodger or friend—from arranging with that person to become her or his helper. The wording suggests that they would have to be hired as a helper and then given accommodation. This is far too restrictive. It would also rule out direct payments to people who take in lodgers whom they subsequently decide to hire as helpers. There would be nothing improper in that and in my view it should be allowed.
In passing I want here to urge that care be taken in deciding who can be classified as a partner. Are gay and lesbian couples to be included? How will disabled people be protected from a local authority that is over-officious or intrusive in determining whether a partner is a partner properly so called? In regard to people not living in the same household, the Government intend to exclude so-called close relatives. The problem with their list is that it includes some who, in the real world, cannot really be termed close. The surviving partner of a stepson is an example. Thus I suggest that the list of "close relatives" should be re-examined and reduced.
It might seem reasonable to exclude anyone who is already providing assistance to a disabled person and for whom extra help is sought from the local authority. But this could exclude people receiving the invalid care allowance and would not be appropriate in all cases. It also raises the issue of how the invalid care allowance will be treated in relation to direct payments, about which so far there has been an ominous silence.
391 To avoid the difficulty the Government describe as creating pressure for informal care to be put on a formal contractual basis, while also avoiding a hard list of excluded relatives, it might be possible to put the onus of proof on the local authority to show that the person the disabled person sought to pay would provide the requisite care informally. In my view it should be possible, without treating it as an exceptional case as the consultation document proposed, to employ a close relative who is—and will remain—in residence elsewhere. This is particularly important in relation to emergencies. The consultation document sets down in paragraph 3 that disabled people will be expected to make sensible arrangements so that they have adequate cover in an emergency, for example if one of their usual assistants is taken ill.
What more sensible course of action could there be than to ask a relative to stand by for emergencies? The current proposals would preclude payment to the relative in these circumstances—whether living in the same household or elsewhere—and I believe this is unreasonable. The practice of employing family members not living in the same household has worked well with the independent living fund, to which the right hon. Member for Chelsea also referred, and I see no reason why it should not work as well in the case of direct payments.
Indeed, if complications are not to arise, I see it as essential that the same rules should apply to direct payments as to ILF payments. Those then are my concerns and hopes for improvements to this Bill. To sum up, the measure is a welcome advance for disabled people but it needs improving to make the five-year wait for it seem genuinely worth while.
§ Mr. Andrew Rowe (Mid-Kent)
I welcome this day as a combination of absolution and delight—absolution as it was because I insisted on pressing my right hon. Friend the Member for South-West Surrey (Mrs. Bottomley), then Minister for Health, about direct payments during the debates on the National Health Service and Community Care Act 1990 that she went away and discovered that the several schemes that were already in existence were illegal. The disability organisations have been extraordinarily kind to me in the long wait to re-establish what we all fondly imagined was a model which could be easily copied, and I am pleased about that. I am also delighted because this is a place where banging one's head against a brick wall is an occupational hazard and in my experience it is seldom that the wall comes off worse. I am pleased that on this occasion perseverance has paid off.
I welcome the Bill and I know that my hon. Friend the Under-Secretary of State has worked extremely hard behind the scenes to turn what at one point was a fairly adamant refusal into the Bill that we now have. That is very good.
It is always fascinating to listen to the hon. Member for Monklands, West (Mr. Clarke), who made some kind remarks about me personally. When he represents a single interest as an Opposition spokesman, he is keen to ensure that standards of national uniformity in provision are laid down, but when speaking as a representative of Scotland he is equally anxious to allow local autonomy and discretion. Those two counter-currents sometimes get him into a little difficulty.
392 I believe that the Bill is excellent.
§ Mr. Tom Clarke
The hon. Gentleman is making an extremely good speech, but will he take some of the blame for the views that he attributes to me when I speak for Scotland since he served at the Scottish Office as a very distinguished civil servant for a long time?
§ Mr. Rowe
It was an experience that I greatly enjoyed. It taught me a great deal about the pitfalls of devolution, and also the great benefits of being an administrator in a much smaller country than England. One at least gets to know people very much better. So I am ambivalent, too.
I wish to echo what one or two people have said. I also wish to draw the attention of my hon. Friend the Under-Secretary of State to the idea that the Government propose to limit the operation of the scheme partly because they are not quite confident yet that everyone who would be judged eligible for it would be able to manage it. The Government's anxieties are targeted on the wrong people: it is not disabled people who might not be competent at managing their affairs—the real anxiety is that there will be a wide discrepancy between those local authorities which already have considerable experience of running such schemes and those which do not.
Arbitrarily to exclude disabled people from the operation of the Bill in order to address those discrepancies is a serious mistake. It would be much better to require local authorities to put forward a scheme which was an effective way to use the powers in the Bill. Those local authorities which already have experience would automatically be accredited instantly and those which have not would have a chance to learn from other authorities. As my hon. Friend the Member for Brighton, Kemptown (Sir A. Bowden) suggested, local authorities would be pressured by their local disability organisations to get themselves to the starting line as quickly as possible. I would infinitely prefer that approach to arbitrary categories of exclusion.
It would be a rash Back Bencher and, I suspect, a rash Minister who would suggest that if you, Madam Speaker, were to encounter some disabling accident—one hopes that you will not—you would be incapable of managing your own services. Yet the implication of the Bill is that a person in that situation would be incapable. That is very dangerous.
§ Mr. Rowe
The question of whether members of the family or the extended family could be paid for delivering care is interesting. My first inclination was that they should be paid. It is a ridiculous thought that one could not employ someone whom one knew well and trusted. I thought of hon. Members who frequently employ their wives or husbands as secretaries or research assistants. That works extremely satisfactorily. But then I read more widely and realised that the objections of the British Medical Association and many others were based on the risk that by making the household wholly dependent on that income, we would run the risk of institutionalising the care of the disabled person in a way that would reduce his or her freedom of action. Those objections have great force.
393 I would resist what in my youth were called tables of kindred and affinity and were printed in the middle pages of the prayer book. During sermons, I used to amuse myself by discovering which relatives were allowed to marry within the family circle. I do not want to see tables of kindred and affinity produced to show who can and cannot be paid for care, but the assurance that has already been given—that discretion will be used—should be generously interpreted when manifestly the right person is employed to provide care.
A number of organisations have asked about respite care. The consultation document appeared to suggest that only four weeks' respite care a year could be provided through direct payments. If keeping people out of expensive residential care would be assisted by more generous provision of respite care, that ought to be allowed. I hope that one consequence of this highly desirable measure will be the creation a new raft of paid caring services, which will drive up standards if—and I say this carefully—those services are subject to proper scrutiny. The opportunity to train and recruit people into demanding but often satisfying work will be greatly strengthened by the Bill, but people choosing whom to employ are more vulnerable even than if they were receiving services direct from the local authority. I am in favour of registering domiciliary care services and having them subject to proper scrutiny.
A number of us have worked hard over a long period to achieve the Bill, which is well timed and most welcome. It is gratifying to hear the arguments that we strove to make being put with such eloquence by my hon. Friend the Under-Secretary of State for Health.
§ Mr. Archy Kirkwood (Roxburgh and Berwickshire)
I am pleased to follow the excellent speech of the hon. Member for Mid-Kent (Mr. Rowe). He would be a welcome addition to the ranks of civil servants we shall need north of the border when we establish a Scottish Parliament. I hope that the hon. Gentleman will consider coming back to Scotland to help in that capacity. Even a majority of 19,600 may not be sacrosanct in the next general election. We heard an excellent speech also—as one would expect—from the right hon. Member for Chelsea (Sir N. Scott). Both he and the hon. Member for Mid-Kent have distinguished experience of the subject. As a member of the Committee of Selection, I cannot resist making the observation that both the right hon. Member for Chelsea and the hon. Member for Mid-Kent were, in different ways, making an argument for extending the scope of the Bill. When the Committee of Selection meets to appoint the Standing Committee on the Bill, I will put in a word for both of them as their contributions would be most welcome.
Although I welcome the Bill, it is only a framework and does not create new rights. Hon. Members on both sides of the House have been at pains over many years to use their experience in Parliament to establish more rights for people with disabilities. I am sure that that is the way forward, but the Bill falls short. Nevertheless, it is to be welcomed for making improved provision and it will be put to good use.
When the Bill was published, Community Care commented that it was 394a piece of legislation so thin it is virtually transparent".I hope that it will be improved in Committee, when I am sure that Members will take the opportunity to press the points made in the excellent speech of the hon. Member for Monklands, West (Mr. Clarke), which set out the main concerns. We shall want to return to those issues in Committee.
All local authorities should consider implementing the provisions of the Bill. As the right hon. Member for Chelsea said, there is no presumption—let alone a legal right—to ensure that that will happen. However, I hope that such a high level of expectation will be built up that all local authorities will get around to providing schemes, even though one appreciates that local authorities are under financial pressure this year and will also be so next year.
The hon. Member for Monklands, West was right to comment that it is a shame that we do not have the advantage of the Government's reactions to the consultation process, to which there were 300 contributions. Those contributions, and the Government's reaction to them, would be of great value. Perhaps the Minister will indicate the time frame for access to the Government's deliberations. If the documents include some that would be of assistance to interested hon. Members—I am not talking about those marked for the Minister's eyes only—perhaps the hon. Gentleman would put copies in the Library. Hon. Members could then benefit from the work of pressure groups, interested parties and other knowledgeable and experienced people.
I have a fetish about negative and affirmative regulations. The main part of the Bill, and most of the arguments that we shall be making, centre on the contents of the regulations. Following the Jopling reforms, it is slightly harder to get a debate on the Floor of the House using the negative procedure. It is not clear to me from the Bill whether the regulations are affirmative. The regulations contain wide and general powers—not just specific regulations limiting the scope of eligibility. One clause contains an all-embracing power for general and related purposes, which always makes me suspicious. Perhaps the Minister will say whether the affirmative procedure applies so that we may have an opportunity to consider the regulations without having to table prayers.
The Minister gave ball park figures for the number of people who will be affected by the measure—30,000 in one category and 4,000 in another. Presumably those figures relate to England and Wales.
§ Mr. Kirkwood
That is helpful to know. That will help us to estimate the number of people who may or may not be affected. We can make some informed guesses about Scotland. The provisions for Scotland in terms of the Social Work (Scotland) Act 1968 will have to be given special consideration in Committee.
I emphasise the importance of effective support services. The hon. Member for Mid-Kent said that people with disabilities are, by and large, perfectly able to look after themselves and that that is right and proper. However, requiring some of them to pick their way through their liabilities and duties as employers without back-up and assistance is something else. The work of the Disablement Income Group is essential to make the Bill work properly. 395 Even if it cost a little bit of money in pump priming to set up the pilot schemes, to get best practice and to disseminate the results, it would be money well spent. The right hon. Member for Chelsea said—I am sure that he is right—that the Policy Studies Institute survey shows that the scheme, if operated properly, could save money in the long run, but it will take time to get there and it will take money to set it up properly.
§ Mr. Rowe
The hon. Gentleman is on an important point. Does he agree that any money that is available, whether it is from savings made as a result of the local authority providing direct payments rather than services directly, or whether it is extra money, should be most profitably used by disability organisations rather than by local authorities?
§ Mr. Kirkwood
I agree with that. I hope that we shall return to that point in substance and at length in Committee.
I am puzzled as to why the Bill—in clause 1(2), I believe—introduces liabilities for local authorities to examine financial circumstances. It puzzles me that the National Health Service and Community Care Act 1990—in section 47, I believe—treated the liabilities for local authorities to examine people's financial circumstances differently from this Bill. I do not understand why we are introducing new provisions that were not deemed necessary in 1990. The provisions, which of course give discretion to local authorities, have been working reasonably well. There is an argument about charging and the difficulties that it is creating, but I am puzzled as to why there should be a difference in approach between the 1990 Act and the Bill. There might be a perfectly obvious answer—
§ Mr. Kirkwood
Perhaps one is about to come in my direction.
§ Mr. Bowis
I do not know whether it is obvious, but the simple answer is that it is merely trying to put on a level playing field those who receive services and those who receive direct payments. The discretionary charge applies to both.
§ Mr. Kirkwood
I am nervous about that, but I do not want to pursue the point further, as we may have further opportunities to do that. I suspected that that was the answer, but we have to be careful about the way in which it works in practice.
I return to a point that the Minister may not have picked up in my earlier intervention. I am still slightly nervous about this aspect. In Scotland, under the Social Work (Scotland) Act 1968, there are schemes which already permit direct payments. There is still concern there—from anecdotal evidence by people who know more about the detail than I do—that some schemes might fall foul of the regulations.
I listened carefully to the helpful intervention earlier from the Minister, who said, if I understood correctly, that nothing in the Bill will prohibit any legal schemes which currently exist. If that is also true for Scotland, I am content; if it is not, I am worried.
§ Mr. Bowis
I can make the hon. Gentleman content: the schemes to which he refers—cash payments in emergencies—are not affected by the Bill.
§ Mr. Kirkwood
In that case, I am happy to sit down. Before doing so, however, I congratulate the Government and hon. Members who have been fighting the good fight. It is a start. I hope that the prediction of the right hon. Member for Chelsea that this is something on which we can build will be borne out in fact.
§ Sir Andrew Bowden (Brighton, Kemptown)
It was indeed sad news when the House heard that Lord Jay had died. It was my privilege to have known him in my younger days. I know that he gave great service to the House and to the nation. He will also be missed as a member of the House of Lords chess team. Invariably, when I played him, representing the Commons, I lost. He will be missed.
We heard a steady speech, as always, from the hon. Member for Roxburgh and Berwickshire (Mr. Kirkwood). I find it difficult to disagree with much of what he said, except on one point, on which I must correct him. I can assure him that my hon. Friend the Member for Mid-Kent (Mr. Rowe) will have a substantial majority at the next election. If he did not, I would be very concerned about my own seat.
Attitudes to the disabled have changed fundamentally during the 25 years that it has been my privilege to serve in the House. The Government deserve considerable credit for the progress they have made in helping to act as a catalyst to bring about those changes. The Bill is another substantial step forward in the right direction. I know that, initially, and perhaps for too long, the Government had reservations, but they have now overcome them, and we can make yet another step forward for the disabled.
It is a fundamental right of disabled people in our country to be able to control their lives in their own way to a maximum degree, as individuals and through their recognised organisations. The House will be interested to know that, in Brighton, there is an influential group known as the Brighton Association of Tenants with Disabilities. It is a strong, effective body, led by a determined and courageous chairman, Max Vaughan. It has fought for many years for disabled people's rights, against anybody who it feels has not been helping and co-operating. I have no doubt that it will greatly welcome and recognise the strengths of the Bill, which will increase choice and increase disabled people's rights.
As hon. Members on both sides of the House have said, the Government must clarify, and quickly, the question of eligibility. It is unacceptable to the great majority of hon. Members to restrict the eligibility criteria on the grounds of age or type of disability. A high percentage of disabled people are older people. There must be no age discrimination.
People whose disabilities begin after 65 already feel discriminated against. They are unable to obtain any benefits towards the cost of mobility. They are not able to make claims for financial support from the independent living fund. Many older people who receive community care services find that their local authorities offer less support—either in fewer services, or services to a lower 397 value—for those over 65 than for those under 65. These distinctions are made purely on the basis of age, and that is wrong.
If age discrimination is not eliminated from the Bill, or if the Government do not make a very clear and positive statement before the Bill comes back to the House, I shall find it very difficult, if not impossible, to support it on Third Reading. I hope that the matter can be clarified when the Bill goes into Committee.
I now come to two other important points. I am delighted that my hon. Friend the Minister made it clear that the Government will support and help in every way to establish schemes to advise, assist and help direct payment recipients to buy services. That will be vital for the local authorities that have had no experience of operating such schemes.
That will also be vital for a large number of individuals who will have the basic common sense and experience of life to handle their own finances but who will need detailed help. That is where local authorities will have a very important role to play. I do not ask my hon. Friend to deal with that in great detail in his winding-up speech, because I have no doubt that he will give further details of the scheme in Committee.
I should be grateful if my hon. Friend would clarify a point relating to direct payments. Surely there is no question of such payments being considered capital or income; that would be fundamentally unfair.
§ Sir Andrew Bowden
I thank my hon. Friend.
Independent living establishes dignity and self-respect. Wherever possible, individuals must have the right to manage their own care services and organise their lives to suit their needs and preferences. I am delighted to support the Bill, and hope to be able to support it on Third Reading as well.
§ 7 pm
§ Mr. Gerry Steinberg (City of Durham)
I, too, welcome the Bill—as, I am sure, do most disabled people.
In 1994–95, statistics issued by Scope showed that 72 per cent. of disabled people wanted more independence, and 59 per cent. wanted more control over their everyday lives. Most local authority social services departments also welcome the Bill: most are committed to the principles of empowering users and carers, and offering them maximum flexibility and real choice in respect of the services that they receive. That view has the full support of disabled people, many of whom find dealing with social services a nightmare. That has been particularly true over the past few years, when resources have been scarce, to say the least.
One of my constituents has cared for her severely disabled daughter for more than 30 years. Virtually everything has to be done for the disabled girl: caring for her has been more than a full-time job for her parents. The mother wrote to the social services department in April 1994:Dear Mr. BrookesIt gives me no pleasure at all to write to you about this matter.I remember the first meeting I went to at the Abbey Day Centre on care in the community and for the first time in Karen's life I felt like the future was looking better for carers like myself. After 398 reading carers magazine and hearing that families like mine will have assessments made, I decided to phone for an assessment. All I asked for was that if there was a problem here, I could ask Social Services to provide extra care for Karen from Crossroads … Since the third visit from the Social worker Crossroads said they would help me to have a week's holiday so I asked if Social Services would pay so much towards the extra care.I cannot understand how money appears to be available for services I do not want, but it seems so difficult for a service I do want. I would rather have 2 hours of care that I do want than 10 hours of care that I do not want.I only hope that the Bill will prevent the repetition of problems such as the one experienced by that frustrated mother.
Paying disabled people money directly, so that they can purchase services themselves, is the ideal way of empowering them. In the past, many social services departments have examined ways of skirting round existing legislation—for instance, voucher or brokerage schemes. As has already been pointed out, at least 60 direct payment schemes are already working successfully in some areas. The Bill, however, will end the legal anomaly that prevents local authorities from making any payment to a third party in connection with the provision of community care.
Although I support the discretion being given to local authorities to decide whether to offer direct payments, and the ability of people to decide whether to manage their own care, I firmly believe that the Government are making a huge error in allowing the Secretary of State to make regulations excluding whole categories of disabled people. In limiting the option of direct payments to those with physical disabilities aged between 18 and 65, the Bill itself becomes discriminatory: it discriminates against those aged 65 and over, and against those with learning difficulties.
As a former headmaster of a school for children with special educational needs and, in particular, learning difficulties, I find it extremely distasteful that the Government appear to be discriminating against an entire section of the community, regardless of individual circumstances. People with learning difficulties should not be excluded automatically; they should be allowed to exercise the direct payment option, if they are able to do so, and should be given all the support they need.
I also think it absurd that people who may need care in the community as much as any other group—those over 65, especially the disabled—are to be disqualified by the regulations. I conclude that the disqualification is based on the fact not that those people cannot understand or decide on their needs, but that such care would cost more money. As always, well-intentioned legislation has been ruined by the Government's failure to provide the necessary funds.
Some schemes that are running successfully now will not be within the terms of the new regulations—for example, schemes that include people over 65 and/or people with learning difficulties. Will such schemes be allowed to continue? I was not sure of the answer earlier in the debate. I am delighted to see that the Minister is nodding, but I hope that that will be made clear in the Bill; it certainly is not clear now.
It would be nonsense not to include such groups, especially as, under the proposed new regulations, local authorities already have discretion to award payments to those who are "able and willing". That in itself gives 399 enough discretion to authorities, and will ensure that all who can and want to participate will be able to do so. If the Government are not prepared to include those groups in the Bill immediately, as they should, the least they should do is agree to a review of the initial scheme once it is up and running, with the aim of adding other groups as quickly as possible.
I am pleased to learn that individuals may receive a mix of direct payments and services. That will allow increased flexibility in the design of care packages, and may also be important in ensuring that the developing community care market is not destabilised. I fear, however, that the legislation could become a charter for unscrupulous providers. We have seen such developments in some of the private nursing homes that have been set up over the past few years. When an agency or commercial provider is used, it should be one that has been approved or accredited in some way.
A rigid inspection service should also be introduced, either by local authorities or by the Government, to ensure that a high-quality service is provided. I have no doubt that some people will seek to exploit the new system, seeing it as a way of making easy money. The last thing we want is the exploitation of disabled people. Most people in receipt of community care have limited resources, and must be given value for money; monitoring will be necessary to ensure that that money is spent properly. Once money had been spent, it would be almost impossible to recover if it had been spent improperly. Local authorities need the power to keep an eye on things.
I agree in principle that close relatives should not be paid to provide a service. I firmly believe that we all have family responsibilities and obligations, but regulations should allow recipients to purchase services to provide some respite for informal carers, and allow them to recompense neighbours, friends and, in some instances, relatives who provide regular and substantial assistance.
I should like to quote a letter to Crossroads from the same lady whom I quoted earlier. It shows her frustration and difficulties in obtaining respite care for her daughter. It states:Dear Ros,Ref. to your visit regarding assessment of Karen, I cannot go on holiday without writing this letter.Monday's visit was different and after Tuesday's phone call; when I had time to think about what you had said, when I said I did not want a new lady coming to visit here, you said that if I was hoping for respite care and hoping to have a weekend away for eg., then I would have to see this lady because you could not see the time when Crossroads could provide this care. I hope you realise that at St. Nicholas Church Hall recently when someone told Mr. P. Brookes that caring for someone at home was made more complicated by the system of offering care which consisted of a bit of help here eg. District Nurse, a bit there Dom. Care, a bit from ILF, a bit from Crossroads, and now you say a bit from this lady you know … The cost of care for Karen while we are on holiday is a lot of money but 4 years ago I know it was costing £600 a week for someone like Karen to live in a home for the severely disabled. Also this is the first time in her 32 years that help has been given to us so that we can have a holiday knowing Karen is being properly cared for in her own home.As for what you have offered, forget it, Karen has to have such personal things done to her just to keep her going, she wants continuity in her care, not anybody or everybody.I hope that that moving letter to Crossroads will end the frustration that people such as that lady feel in failing to obtain proper respite care.
400 Local authorities should be allowed the discretion to decide bona fide arrangements. They should be allowed the discretion to decide any period of temporary residential or respite care that is needed. To fix a specific number of weeks in one year is inflexible, and does not cover for the unexpected.
My understanding of the Bill is that, if a disabled person wished to use direct payments to employ someone as a care assistant, they would have to take on all an employer's responsibilities. For example, they would have to understand the workings of tax deductions, national insurance, employer liability insurance, and sick pay and holiday pay. That is a formidable task, and could put many disabled people off the scheme.
If my assumptions are correct, surely those people should not have those responsibilities, and a system should be devised to avoid it. If that is not possible, however, it is obvious that a huge amount of support will be needed for someone who has never had to hire or fire before. The Government should make it clear in the regulations how that support will be organised and provided.
As I said, if there is not adequate support, many people may be put off from using the scheme. Consequently, direct payments would be likely to reach only a limited number of people, which is the last thing that we want. Over the years, the Government have produced some reasonable reforms in the special needs sector—I admit that, and have congratulated them on it. I think in particular of special educational needs.
The Government have always failed, however, in that they have never provided the resources to ensure that those reforms were successful. What disturbs me about these proposals is that, unless adequate resources are made available for community care—clearly, they are not at present—the new system could become a cheap and easy option for some local authorities, or lead some to cut services.
Equally, the Bill must not become a means in some sectors of passing responsibility for an underfunded, failing community care system to disabled persons. Inadequate funding could fail the system and do the opposite of what the Bill hopes to achieve. It could threaten disabled people's independence.
As the Government will not make new resources available, that will inevitably restrict the number of people who can take advantage of the new law after it is enacted. The introduction of direct payments may further highlight the existing lack of consumer choice. I am pleased, however, to support the Bill, and I hope that, in Committee, most of the problems and difficulties that are foreseen can be ironed out in a reasonable way.
This is a perfect opportunity for disabled persons to become independent—so that they do not have to rely on the generosity of others—and to be allowed to do what they want, when they want; so let us hope that the House gets it right.
§ Mr. Peter Thurnham (Bolton, North-East)
I am delighted to support this important Bill, which represents a breakthrough in care for disabled people. I congratulate all the people who, over the years, have campaigned in the House, in the other place and outside on the success 401 of these measures. I congratulate the Disablement Income Group and other lobby groups that have campaigned for so long, the hon. Member for Mid-Kent (Mr. Rowe), who has been campaigning for more than six years, and Lord McColl in the other place, who has been pressing for more than three years. I have supported the hon. Member for Stratford-on-Avon (Mr. Howarth) in delegations to the Department of Health to press for these measures.
I congratulate the Minister because he has achieved a Government U-turn and overcome the ideology of the Treasury mandarins. This is an important breakthrough because, in effect, it establishes a decentralisation of the welfare state and allows local authorities to make discretionary cash payments within the constraint of an overall financial budget. We may view it as a model for ways in which the welfare state could develop.
The person who deserves the greatest recognition for his achievement is the right hon. Member for Chelsea (Sir N. Scott). The independent living fund was the pioneering achievement and showed how disabled people could manage their care so well. That laid the foundation for the schemes in many local authorities, and for the Bill.
The independent living fund showed how successful such schemes could be. I was amazed at the report entitled "Cashing in on Independence" produced a year or two ago by the Policy Studies Institute. It shows the extent of those benefits. It states:The findings indicate that support arrangements financed by direct/indirect payments are, on average, between 30 and 40 per cent. cheaper than equivalent service based support. The average hourly unit cost of support for people receiving payments is £5.18 compared to £8.52 for service users.That is a massive increase in value for money. I am sorry only that the Government seem to wish to restrict benefits of that magnitude.
Cash benefits are not the only benefits. Others include the increase in control by service users, greater reliability, flexibility and better personal relationships that develop through being able to choose and make decisions. All those are massive benefits, and we should not restrict them.
I am surprised that the Minister seems to have given in to the Treasury mandarins in that respect. There is no purpose in having any restrictions. Let us just scrap them. Why should 65-year-olds be denied those benefits? They have had a lifetime's experience of managing their lives, so surely they can manage care packages as well as anyone. Often, mentally handicapped people need the flexibility of those services. Obviously, their carers would make the decisions for them, but they need those benefits.
I hope that the Minister will reflect further. He has the benefit of the consultation programme. Let us hope that some revelations about that will be made before the Bill's Third Reading because it might help to make his mind up. Not many people will have written in, in response to the consultation paper, to say that they favour the restriction on 65-year-olds. I would not be surprised if there were a 100 per cent. response against that restriction. The hon. Member for Roxburgh and Berwickshire (Mr. Kirkwood) asked if the consultation responses could be placed in the Library. If the Minister did that, we could identify exactly how many felt that we should remove the restrictions.
The hon. Member for Brighton, Kemptown (Sir A. Bowden) has already said that he will reserve his position for Third Reading, and like him, I hope that, by that time, 402 the Government will have changed their mind. I think that everybody should benefit from those massive increases in value for money. What is to be gained in trying to stop that?
We have said that local authorities can have discretion, so let us leave them to act as gatekeepers, not try to second-guess them. The Bill is a challenge for local authorities, and rather than putting on blanket restrictions. the Government should let local authorities use their discretion. Many authorities are running schemes already. Last week, Bolton's director of social services told me that he saw no reason for a restriction affecting people over 65 in Bolton, and I am sure that that is felt throughout the country.
I support the Government's position on the difficult question of relatives as paid carers. In the guidance, there should be a strong presumption against using relatives as paid carers, but I was pleased to hear the Minister say that there would be discretion too. It is important that local authorities should be able to use discretion in individual cases.
I shall mention one interesting constituency case—the difficult care case of Paul Hargreaves, who will be 28 next week, and who is severely mentally and physically handicapped. His care is managed by his 70-year-old mother. In her own words, she is "worn out" by caring for him. Indeed, it is extraordinary that our society relies upon a 70-year-old woman to manage the care of such a severely handicapped young man.
Paul's mother, Norah, had an excellent carer arranged through the independent living fund. She became fond of him, and decided that it would be mutually advantageous if they married. Unfortunately, if they had done so, the independent living fund would immediately have stopped all the payments. That example demonstrates why discretion is needed.
Paul's mother receives £325 a week from the independent living fund, and has a team of three carers who provide nearly 100 hours a week, but no care is provided for Paul during the night. You can imagine, Mr. Deputy Speaker, how difficult it is for a 70-year-old lady to try to cope with her 28-year-old severely handicapped son on her own, without outside help, during the night.
I hope that the Bill will enable the local authority to provide an extra financial care package, so that Paul's mother can buy in care to help during the night as well. She has said how much she appreciates being able to manage the care herself. She much prefers the flexibility of the cash arrangement that she now has, but she still needs to be able to buy rather more care.
I do not wish to go through all the other items in the consultation paper; no doubt they will come up in Committee. The hon. Member for Roxburgh and Berwickshire said that he might have some influence on the Committee of Selection, so he might like to include me, if he wants another name to put forward for the Committee.
I do not see why there should be a four-week restriction on respite care. Again, local authorities can be left to make up their minds on such matters. As for support services, local authorities should be encouraged to provide them, and voluntary organisations could also do so.
Indeed, I see no reason why local authorities which provide a support service in their own areas should not offer the service outside their areas too. If a local authority 403 in one area could not offer a support service, or if an adjacent authority offered an especially good service, it should be easy for the carer or the recipient of the care to organise care through the support service in that neighbouring authority. Such arrangements need not be limited to one's own local authority. Support services can be provided equally well by outside agencies, and there could be a degree of competition.
As for regulation, in Bolton there is now a voluntary regulation scheme. I would be inclined to leave that in place, but obviously if there were substantiated fears that abuses were taking place, we would have to consider statutory regulation. However, care units are often very small, and we should not try to impose too much regulation on them.
In conclusion, I call upon the Government to scrap all the eligibility rules. Let us forget all about them, so we do not have to worry about what is tucked away in the regulations concerning 65-year-olds, and mentally handicapped people, even if it can be demonstrated that they can manage.
I beg the Minister to forget the mandarins behind him and simply to listen to the people. They will tell him clearly enough. Obviously, in some quarters of the Government there has been a grudging acceptance of what they say. On the question of mandatory requirements, I would give local authorities three years, or at the most five, to get to grips with the voluntary and discretionary arrangements now being offered, and then call upon them to operate direct payments on a mandatory basis.
§ Mr. John Heppell (Nottingham, East)
Like everyone else, I start by welcoming the Bill, but I drag hon. Members back a little way by reminding them that we are now passing a law to allow people to do what they have been doing for years anyway. We are talking about direct payments, but they first came into operation in 1981. The first centre for independent living was set up in 1983, and the independent living fund in 1988.
Schemes have been set up all over the country. The councils in Wiltshire, Derbyshire, Avon, Leicestershire, Hampshire and Merton all set up schemes. I am pleased that those councils now support the idea of direct payments, but we must remember that such payments have already been working for a long time.
I have some concerns about the Bill, but in view of the time, and of the fact that some of my hon. Friends want to speak, I shall stick to just a few points. First, I know that the Bill will extend choice for people with disabilities, but I want to extend that choice to everyone with disabilities, not just to a few people in certain categories. Otherwise, we shall be legislating to bring about more discrimination.
The reason for the eligibility argument has much to do with the success of existing direct payment schemes and of the independent living fund itself. The initial estimate was that demand for the fund would not exceed 1,250 people overall, but by 1993 more than 21,000 people were taking advantage of the scheme. The arguments against people over 65 and people with learning disabilities are really the Government saying, "We do not dare open the floodgates." Such an argument causes me, as well as disability organisations and people with disabilities, much concern.
404 I understand that, nationally, 30 per cent. of all current schemes are designed for people over 65. My local authority, Nottinghamshire, now has 128 schemes in which indirect payments are made, and 78 of them are for people over 65, so more than 50 per cent. of the schemes that operate direct payments through the route of third parties are being run for the benefit of people over 65.
I want those schemes to be not only protected but extended. The people involved with the schemes are happy with them. The social services departments and the local authorities as a whole are happy, and, as is more important, the people with disabilities who receive the services are happy too. Those schemes need to be extended. However, I must admit that it seems strange to see local authorities acting like drug barons or gangsters, and laundering their money through a third person to get it to the person who wants to spend it. To me that seems wrong.
There is plenty of discrimination against people over 65 already—for instance, in terms of social security benefits. I recognise the historical reasons for that, but I hope that, over time, it will be phased out. I do not want us to introduce legislation that causes more discrimination.
I am also concerned that people who have learning disabilities will not be allowed to take part in any scheme. According to the independent living fund, 18 per cent. of its customers are people who have learning disabilities. I have managed to establish that in my authority there are at least six schemes in which people with learning disabilities take part. At the moment, those people make decisions about what council services they want, and I cannot see any reason why they cannot make decisions about direct payments.
In Nottinghamshire, 19 people who are infected with HIV are on schemes. In many respects, direct payments would be ideal for them because the sort of service that they want—some befriending, and a little social care—does not fit easily into the usual mode of local government provision.
All ILF recipients found that the ability to control their personal assistance, and therefore their lives, improved their quality of life. Many of them also said that they would have liked more practical support, especially in the early stages of independent living. It is a shame that the ILF money was not ring-fenced for independent living when it was transferred to local government because it has drifted into councils' general budgets and disappeared. We ought to try to pluck some of that money back out and persuade local authorities to use it to kick-start local organisations into setting up personal assistance support schemes.
Employing people is difficult. As my hon. Friend the Member for City of Durham (Mr. Steinberg) said, it involves many tasks such as drawing up job descriptions, advertising, short-listing, interviewing, recruiting, drawing up contracts of employment, sorting out tax and national insurance, setting rates of pay and considering insurance and health and safety. When I became a Member of Parliament, it was a nightmare being an employer for the first time in my life. We therefore need to ensure that people who become employers have the proper support, and not only when someone is first taken on. People will need on-going support because new problems will arise as the disabled user identifies new needs.
405 It is almost certain that disputes and tension will arise between the employer and the employee, as I suspect anybody who has ever been an employer knows. It is the nature of the relationship. That is fine when one is employing somebody to fix a car, and it is probably okay when one is employing somebody as a secretary, but when the person being employed is relied on to get his employer out of bed in the morning or to dress or feed him, it is understandable that the employer will feel vulnerable without support.
There are already many schemes to provide such support, but, unfortunately, they vary. There are reasons for the variety: local authorities interpret the law differently, different local structures and priorities affect the way in which services operate, the degree to which an active disability or voluntary organisation operates and what relationship it has with the local authority differs, and geographical location is a factor. There are generally more personal assistance support schemes in urban areas and more in the south of the country than the north.
It is important to differentiate, for anybody who might be getting confused, between a personal assistance support scheme and a third-party arrangement. The third-party arrangement acted only as a go-between; a means of laundering the money. It usually took the form of a voluntary organisation, which paid the money directly to the disabled person. No support or other service was provided, apart from the administration of the payment. The personal assistance scheme, in contrast, should provide information, advice and support from the moment that somebody is considering direct payments, and it should continue—sometimes indefinitely.
The Bill might make the need for third-party arrangements unnecessary, but I believe, and I think that people with disabilities know, that if the legislation is to work effectively, personal assistance support schemes are essential. Without such support schemes, we would deny the opportunity of direct payments to the majority of people who would like to take advantage of them.
§ Mr. David Hinchliffe (Wakefield)
I give the Bill a cautious welcome, because although it reflects a welcome move towards independent living, such a move is not reflected in other elements of Government community care policy. On many occasions, the Minister has heard me express my worry about the way in which in the 1980s the Government spent a huge amount of money expanding institutional care at the expense of domiciliary care. They spent £10 billion on resurrecting institutional care for disabled and elderly people, yet such care was on its way out in the late 1970s.
One can speculate on what might have been achieved with just a small portion of that £10 billion of income support and supplementary benefit payments paid to people in care homes if it had been spent on schemes promoting the idea of independent living. I reinforce the point that the community care changes did not enhance independent living as they ought to have done, for the simple reason that the Government were so involved with the ideology of the privatisation of care and with encouraging the independent sector that they forgot that the independent sector was primarily concerned with 406 institutional care. There has therefore been an in-built incentive to expand institutional care, when the real thrust of community care changes should have been about enhancing independent living.
Nevertheless, I am happy to join hon. Members in commending the Bill, especially the hon. Member for Mid-Kent (Mr. Rowe). As the hon. Gentleman knows, I was in Committee in 1990 when he moved his amendment. I checked today to see whether I opposed it—unfortunately, I did not. I have been caught out previously for thinking several years later, "Perhaps that person was right." I think that the hon. Gentleman knows, however, that I had certain reservations about the amendment. That is because there are certain similarities between what is proposed in the Bill—and what was proposed in his amendment—and the proposed education voucher scheme. It has been a right-wing demand for many years that people should be able to purchase vouchers for services outside the public sector.
As the hon. Member for Mid-Kent knows, I was worried that, alongside the care changes that we were discussing—the introduction of an internal market in the health service—the measure could have been interpreted as yet another push towards the privatisation of welfare provision. I think that he understands that. I probably know him better now as being one of the more sane Conservative Members with whom I have had to deal. I respect the fact that he has persistently pursued the issue, and he deserves some credit for the fact that we are discussing the Bill tonight.
I was converted to the cause not by the hon. Member for Mid-Kent but by a woman whom I met here who was active—I believe that she still is—in the British Council of Organisations of Disabled People. I knew that she was called Rachel, and my hon. Friend the Member for Stratford-on-Avon (Mr. Howarth) reminded me that she was called Rachel Hurst—a formidable campaigner on behalf of people with disabilities. She asked me—I shall not use her exact words for reasons of politeness—whether I could see to my own personal bodily functions. I answered that I had been able to manage that for some years. Her point was: should she not have the right to determine personally who administered such intimate tasks in her case because, as a disabled person, she was reliant on others to perform tasks concerning bodily functions? I certainly could not argue that she did not have that right. Inherent in what we are debating today is the right of people such as Rachel Hurst to take decisions that any one of us would want to take ourselves in similar circumstances. I would like to place on record my personal thanks to that woman for converting me to the cause all those years ago.
Since then, I have had opportunities—certainly during my time as an Opposition Front Bencher—to visit various parts of the country and see a range of schemes offered by independent living. Some, I suspect, might have been deemed illegal had people looked at them in detail, because local authorities made payments in spite of the Government's advice. I do not think that the Government—even this Government—would have objected had they looked at what was achieved by those payments and the way in which they were facilitating in so many people's lives an independence that would not otherwise have existed.
407 I pay tribute also to the chairman of the British Association of Social Workers, David Brandon, whom some hon. Members know. Along with a small number of people, he has been at the forefront of the campaign for service brokerage, a matter to which my hon. Friend the Member for City of Durham (Mr. Steinberg) and others referred. Service brokerage is the concept whereby a broker acts on behalf of a person wanting to secure services, when that person may not have the capacity to act individually because of learning difficulties and may not have a carer acting on his behalf.
David Brandon introduced me to a lady—whose name I do not remember—who told me that she was the mother of a young woman with Down's syndrome. That young woman spent most of her childhood, adolescence and early adult life in a long-stay mental handicap hospital. Her mother said that, had even a portion of the public resources tied up in her daughter's care at that hospital been made available to secure services within the community, her daughter could have had independent living. That point was well made, and we must encompass within the legislation cases such as that young woman. It is totally wrong to exclude people with Down's syndrome or learning difficulties from the measure, as they should have equal rights to independent living. I am sure that hon. Members on both sides of the House agree with that.
When I was appointed to the Opposition Front Bench in 1993, the first document for which I was responsible in relation to the Labour party's policy on community care included a commitment for us to look at the idea of service brokerage and direct payments. By then, I was fully committed to the cause, and I listened to people who had seen exactly what that offered. I am happy that the Bill paves the way towards such a system.
I wish to deal briefly with the detail of the Bill. Like other hon. Members, I have certain reservations about one or two aspects, the first of which is the question of eligibility. We cannot sustain discrimination against other groups of disabled people—such as people with learning difficulties and people with a variety of different problems—in the legislation. The principle must apply to people other than those with purely physical disabilities, and most people in the Chamber would accept that.
In an intervention on the Minister, I said that people did not fall into nice and neat categories in relation to disability. Some people, sadly, have elements of mental disability, learning difficulties, mental health problems and occasionally mental illness alongside physical disabilities. We cannot therefore simply categorise, as the Government appear to be attempting. I accept that the consultation document is still being studied, and I hope that the Minister will genuinely reflect on this point in Committee. He is a fair man, and he understands that that is a reasonable point of concern.
In looking at people with learning difficulties, for example, the Committee can also ask questions about the issues of advocacy and brokerage where people may not be able to handle the employment of a carer. Those issues must be examined. I do not like the word "brokerage", but the principle of someone acting for a person] in receipt of services should be looked at in Committee. That ties in with a point raised by several hon. Members about enabling people to be good employers. I recall that when I floated the idea of direct payments in our policy document, my hon. Friend the Member for Sheffield, 408 Brightside (Mr. Blunkett) said to me—and he could say this—that not all disabled people are particularly nice. I understood his point. Sometimes a person employed by a disabled person may not have a good deal, and I hope that the Minister will listen to suggestions in Committee on that point.
It is wrong to exclude local authority services from the measure, and I do not think that anyone has referred to that in the debate. The Government do not allow local authorities to sell services, but I can think of situations where a positive choice of carer would be someone in the employment of a local authority. It would be wrong for a person who has the ability to obtain direct payments to be excluded from employing the person chosen simply because that person was employed by a local authority. I have perhaps misunderstood the measure, and the Minister may wish to comment, but the Bill excludes the purchase of services from those employed by a local authority, and that needs to be looked at in more detail.
I would also welcome the Minister's thoughts on whether discretionary power is appropriate, a subject to which the hon. Member for Brighton, Kemptown (Sir A. Bowden) and others referred. The Audit Commission has produced a report that states that the delivery of community care services across the country is inconsistent in a variety of ways. In my area of West Yorkshire, certain authorities offer certain services, but others do not. Certain authorities charge for some provisions, but others do not. Sometimes, the charges are markedly different in different areas. The discretionary provision in the Bill will add to the inconsistencies, and that is not in the interests of people in receipt of services.
In concluding my detailed comments on the Bill, I wish to encourage the Minister to look at the registration and inspection of available care. The measure will increase the use of individuals providing services in the independent sector. The Minister well knows that there is no provision for the registration or inspection of domiciliary care. I introduced the Registration of Domiciliary Care Agencies Bill three years ago, and the Minister's predecessor—the hon. Member for South Suffolk (Mr. Yeo)—told me that the Government accepted the principle of registration and inspection for domiciliary care, but were conducting a review. That review has not been completed, three years later. It would be irresponsible of the House to pass the Bill without including within it proper safeguards to ensure that available care is inspected, registered and of good quality. The provisions will relate to the vulnerable and the isolated, many of whom are wide open to exploitation unless there is proper registration and inspection.
I give the Bill a cautious welcome. I hope that it reflects a change of direction in Government policy towards independent living. If that is so, I hope that there will be other related policy initiatives. The current organisational framework for the delivery of community care is outdated. It reflects a time when there were clear divisions between social care and nursing care. Those divisions no longer exist, yet we still have an organisational framework that reflects that rigid split. That is nonsensical.
There is another bee in my bonnet. I hope that we are about to move towards much more radical alternatives to institutional care along the lines that have been adopted in the Netherlands and in Denmark, where steps have been 409 taken to outlaw care homes. It seems demeaning to people to end up in warehousing facilities within institutions. That is an outdated concept.
Let us use the Bill to push ourselves forward to a time when we can say, "Yes, you need specific care, and you can have that care in your own home. If it is not possible to receive it in your home, you will be able to receive it within a homely environment, not an institution." I hope that the Bill marks a new approach. I welcome it with the reservations that I have mentioned. I hope also that the Minister has listened to the concerns that others and I have expressed.
§ Mr. Alan Howarth (Stratford-on-Avon)
The case for direct payments is supported by moral, practical and financial arguments, all of which point in the same direction. The moral argument, however, is the most important. The case for direct payments is most importantly expressed in terms of human dignity, personal freedom and civil rights.
Some hon. Members may have read the study published by Dr. Jenny Morris, entitled "Community Care or Independent Living?", in which in citing one of her case studies, she sets out the view of Maria, who talked to her about direct payments. She said:It means I can get up in the morning when I want to, go to bed in the evening when I want to, go out when I want to and lead the kind of life that I want to … to not be reliant on my family and friends … to keep all that separate (so that) to them I'm me rather than someone who needs help.There is an ambiguity in the term "care". We like to associate care with cherishing and loving people, and through that giving them the best support that we can. However, care has perhaps too often meant, in practical terms, something that is more akin to being taken care of and to being dealt with as a problem case.
Another of Jenny Morris's interviewees used the word "custodial" to describe the care that she had received. Too often, care has been somewhat too akin to institutionalisation within the community. It is not so with independent living. But if that is made possible through direct payments, services can be fitted to the needs of the individual disabled person rather than his or her needs being accommodated to the needs of the social services authority.
Direct payments are good for the disabled. With the best will in the world, social workers are unable to design packages of care that are as sensitive, flexible and precisely tailored to the needs of individual disabled persons as those that disabled people are able to create for themselves. Inevitably, social workers must juggle with the needs of a range of clients. They must work within the rigidities of bureaucratic life. I make no criticism of them for that. With direct payments, however, all concerned are released from such limitations.
Direct payments make it possible for the demands on families to be eased and for the stresses and burdens to be lightened. They are good for local authorities too, because they enable authorities to use the expensive time of skilled, professional staff to do the jobs that only they can do. It is absurd to have highly trained and qualified staff organising the lives of intelligent people who can do that perfectly well for themselves.
410 The financial argument reinforces the moral and practical ones. As the right hon. Member for Chelsea (Sir N. Scott) said, experience tells us that the cost of providing care that is organised by the disabled person personally with direct payments is about 30 to 40 per cent. less than the cost of providing local authority services, because administration overheads are avoided.
That is a great recommendation in itself for direct payments. I hope, however, that the Government will not be tempted to use that factor as an excuse for applying a further squeeze on the resources that are made available to social services departments.
It is emphasised in the 18th paragraph of the consultation document that a local authority shall not arbitrarily decide to make payments that are inadequate. What is sauce for the goose should be sauce for the gander. After all, year after year the Treasury makes arbitrary decisions that lead to the making of inadequate payments, allowing only inadequate resources to be made available to social services departments. If local authorities are admonished by the Government and told not to behave in that way, I hope that the Government will take that lesson to heart themselves. It is an experience that we speak about with strong feeling in Warwickshire, where many of my constituents have recently experienced drastic increases in charges because of the inadequacy of the resources that are available for social services.
The Bill has been a long time coming, but I congratulate the right hon. Member for Chelsea, who over a long period wanted policy to develop in the direction set in the Bill. The right hon. Gentleman was responsible, of course, for the introduction of the independent living fund in 1988, which was a giant step towards making direct payments available to a wider range of disabled people. I congratulate also the hon. Member for Mid-Kent (Mr. Rowe) on his determination to pursue such a policy through a private Member's Bill. I know that the Under-Secretary, the hon. Member for Battersea (Mr. Bowis), has for a long time been thoroughly sympathetic to the objective. I am sure that he is pleased to have been able to carry the day within the Department.
Perhaps it was implicit in the tone in which the Minister spoke earlier that he accepts that the Bill is somewhat restrictive. I believe that it is too restrictive. The consultation document tells us that direct payments are a "new and untested development". That is not so. About 60 local authorities are implementing direct payment schemes through third-party agencies. It is a few years since the directors of social services unanimously resolved that they would like to see legislation introduced to empower social services departments to make direct payments.
It is a shame, therefore, that people with learning difficulties, as it is proposed, should be excluded from the new freedom. That seems peculiarly unnecessary, given the experience of the independent living fund. After all, 18 per cent. of the ILF's cliehts are people with learning difficulties. They manage very well, provided that they have the advocacy, assistance and support services that the Government themselves envisage. If people with learning difficulties are to be excluded, will people with a history of mental illness be similarly excluded? I ask the Minister to comment on that now or later.
I share the regret that was expressed by several hon. Members, that people over 65 are to be excluded, at least initially. Some 37 per cent. of the beneficiaries of the 411 original independent living fund were people over the age of 65. The Royal National Institute for the Blind has pointed out that a high proportion of people who are visually impaired are over the age of 65. The blind and the partially sighted will feel that the existing inadequacies of community care are certain to be reinforced by this feature of the new policy. People over 65 are as likely to be fully capable of organising and managing their own budgets for personal care as are people under 25.
There is an irony in the consultation document. Section L states:suitability for direct payments should be considered in a non-discriminatory manner for all eligible people requesting them.However, section B sets out the Government's proposals for discrimination—the exclusion of people with learning difficulties and people over the age of 65. Age Concern has termed that "blatant age discrimination". If the Government consider that Age Concern is biased, perhaps they will heed the Law Commission, which recommended:There should be a presumption against lack of capacity".The Government's timidity is misplaced. There is a great deal of experience around. I hope that they will reflect carefully on the injustice and the dashing of hopes that their policy, as they at present intend it, will cause.
The Government want to give local authorities discretion as to whether they should run direct payment schemes at all. The very existence of that discretion will result in discrimination, which I regret. If the Government are to give local authorities such discretion, surely they do not need to double-bank by taking a discretion unto themselves as well, through the regulation-making power. Surely we do not want to pursue a discriminatory policy. The creation of a double discrimination, through central Government regulations and the scope that will be provided for local authorities to restrict their schemes, is deeply regrettable.
I hope that when the Government have considered the responses to the consultation, including this debate, they will, after all, be willing to espouse option (f) in the consultation paper:All adults who are able and willing to manage direct payments (with help if necessary), with no age limitshould be eligible to be included in the schemes.
If the Government should feel unable to go that far, it is essential that they make it clear, formally and explicitly, that local authorities should not unreasonably refuse to operate direct payment schemes where there is demand for them. Where local authorities operate them, it should also be insisted that they do so according to clearly expressed criteria, consistently, not capriciously, applied. Disabled people need to know where they stand.
Local authorities would welcome guidelines from the Government. While we want experimentation and local innovation, it is essential that minimum national standards should be stipulated. Pauline Thompson—who has been rightly praised by the right hon. Member for Chelsea and who has done so much wonderful work in this field, both as a trustee of the original independent living fund and as director of the Disablement Income Group—has called for a national code of good practice. I hope that the Government will be willing to respond positively to that. I commend the DIG for the handbook that it has produced in timely fashion, entitled, "Facilitating and Supporting 412 Independent Living". I also appreciate the support of the Joseph Rowntree Foundation for the British Council of Organisations of Disabled People, for the guidance that it has produced to support independent living schemes.
It goes almost without saying, yet needs to be said, that local authorities must have adequate funding. It is their duty to fund the needs that they assess, but it has been a duty too often honoured in the breach. They need to supply the resources to enable disabled people to be employers—and good employers. The costs that need to be met must include the costs of recruitment, PAYE, national insurance, sick pay, holiday pay, insurance costs such as employer's liability insurance, and, in certain instances, redundancy costs. Many people will need to pay the fees of domiciliary care agencies.
My hon. Friend the Member for Wakefield (Mr. Hinchliffe) said that we need to consider the status of domiciliary care agencies carefully. For one thing, the VAT position is anomalous. I understand that there is exemption from VAT where an element of medically qualified supervision is associated with a domiciliary care agency, but not otherwise. All agencies should be exempted from VAT, provided that they are registered in a national scheme, such as that proposed by my hon. Friend, and subject to proper inspection.
Among the other costs that will need to be supported by local authorities are those of training, advice and advocacy. Local authorities will do well to give their support to user-led voluntary organisations, which will be especially cost-effective, because they have crucial insight into the needs of disabled people. They make it possible for disabled people to share experience and expertise, and to pool overheads such as payroll costs.
I hope that local authorities will give support at a suitably early stage. Paragraph 6 of the consultation document states:The Bill starts from the point where, following an assessment".If we start to provide support only following an assessment, it will be too late. From the moment an assessment is contemplated, the question whether it would be appropriate for a disabled person to use direct payments should be under active consideration. I should not need to stress, but it may be worth so doing, that disabled people must be fully involved in the assessment of need, because nobody understands their needs better than they do.
I welcome the Government's proposal to permit direct payments to be used to pay for the costs of aids and adaptations. That is an encouraging flexibility, but disabled people need expert advice on that especially. It can involve much bafflement and the waste of a great deal of money. In everyone's interest, it is important that competent, expert advice should be available to disabled people locally. I ask the Minister to assure the House that the provision will not restrict the existing entitlement to aids and adaptations for which there is no charge.
I was puzzled that the consultation document proposes that direct payments should be usable for a maximum of only four weeks' respite care in a 12-month period. I do not understand the basis for that arbitrary figure. I think that judgments should be made case by case, as the amount of respite that may be needed will vary greatly between households. Respite care is an excellent investment: it enables people to remain in their own 413 homes or allows carers to continue to provide care for longer periods. That is highly desirable in itself, as well as cost-effective.
I hope that the Government will not give with one hand and take away with the other when it comes to charging. The charging regime across the country is riddled with inconsistencies and inequities. We must have some national guidance in order to establish a more acceptable pattern and achieve greater consistency and fairness in that field. I note that the Government intend to dock direct payments by removing charges before the payments reach disabled people. I believe that that is discriminatory and I hope that the Government will reconsider their decision. Why should the Government take from disabled people the resources that enable them to meet community care charges, rather than allowing them to act for themselves, as others do? In any case, disabled people should have the power to negotiate the appropriate level of charging. They may need to hold a valid discussion with social services authorities on the subject.
A number of hon. Members have mentioned the restrictions that are imposed on members of a disabled person's family who may qualify for payment through a direct payment scheme. It is impossible, as well as undesirable, for the state to shoulder responsibility for the vast effort that goes into informal care. There are some 6 million carers in our society and the state should not intrude upon care that is willingly and lovingly given by relatives and friends. However, we take too much for granted that extensive devotion and care.
Very tight restrictions govern the invalid care allowance, and £32.25 per week is a meagre allocation. While the Government are considering policy in this field, I hope that they will examine support for carers. The principle that the state should, in appropriate circumstances, subsidise family members who care for a disabled person is already established through the existence of the invalid carers allowance.
The list of exclusions in the consultation document as to family members' eligibility to receive payment is strangely arbitrary—for example, a niece or a cousin is not precluded. The guidelines are too rigid—although the Government acknowledge that flexibility may be needed in rural areas, such as my constituency, where it is not easy to find people outside families who are available and capable of assuming a caring role. It would be very unfortunate to preclude payments to family members in areas such as south Warwickshire. I hope that the Government's intentions in that area will be interpreted much more generously.
The Government do not need to fear that there will be an enormous explosion in the amount that is spent supporting family members who are also carers. Many disabled people would love to be less dependent and to feel less of a burden upon their families. They often wish not to employ family members but, where they do, we must recognise that that can be extremely cost-effective.
The Government are proposing two different sets of rules. The consultation document sets out the limitations on the employment of family members under direct payment schemes. However, there is a rather more generous system with the independent living fund. I suggest that it would be sensible to have common 414 criteria for both schemes—not least because a not inconsiderable number of disabled people will receive funding from both sources. I hope that, in making a cost-benefit analysis of their proposals, the Government will recognise that, by supporting family carers, they may give disabled people the opportunity to work and to contribute to the economy.
That leads me to the question of means testing. I am sorry that the Government intend to require local authorities to provide direct payments on a means-tested basis. We have seen a huge extension of means testing in the welfare state, with many associated difficulties, which were described in the debate yesterday. I fear that, for people who have very high care costs because of severe disablement, but who are capable of joining the labour force and contributing to the economy, means testing could be the pressure that tips them out of the labour market. They may feel that the game is not worth the candle: that they cannot afford to go on earning if they will lose the benefit that allows them to meet the high costs of personal care.
I offer those points in a constructive spirit. I have no desire to crab the Bill, which I welcome very much. I regret that the Government took so long to reconcile themselves to the desirability of direct payments, but I hope that in politics there will always be welcome for the sinner who has repented—even unto crossing the Floor. I hope that the consultation process will prove to be genuine and that the Government will consider carefully, sympathetically and constructively the responses to it. I hope also that, in Committee, the Government will improve their proposed eligibility conditions, move towards a satisfactory national definition of standards and commit themselves to providing funding on an appropriate scale. The Government have accepted the principle of direct payments: it is now important that they implement that principle generously.
§ Mr. Gerry Sutcliffe (Bradford, South)
I am pleased to have the opportunity to speak in this well-informed debate. I pay tribute to hon. Members on both sides of the House for the interest that they have shown in the direct payment scheme and I congratulate them on their commitment to it. I refer specifically to the right hon. Member for Chelsea (Sir N. Scott) and the hon. Member for Mid-Kent (Mr. Rowe), who have obviously faced an uphill task in persuading their colleagues that that important measure should be enshrined in legislation.
I pay tribute also to the progressive contribution from my hon. Friend the Member for Wakefield (Mr. Hinchliffe), who looked beyond the Bill at how to address the future needs of disabled people. My rugby league team recently beat my hon. Friend's team, so I must ensure that I build up my stock and increase my credibility with him over time.
This is a small Bill, but it has considerable potential. I recognise the reasonable manner in which the Minister presented the Bill on Second Reading. As my right hon. and hon. Friends have said, the Opposition recognise that the Bill has shortcomings and is limited in its scope and application. I know that in Committee the Minister will listen to the concerns raised by hon. Members, disability groups and local authorities who want to contribute to the success of the direct payment scheme.
415 There should be a greater sense of outrage in relation to how disabled people are treated in this country. More Members of Parliament should be present at debates such as this to ensure that disabled people's rights—basic civil rights—are recognised. I am also concerned about the length of time it takes to get things done for disabled people. As my hon. Friend the Member for Nottingham, East (Mr. Heppell) said, these schemes exist and work, but we have had to wait a long time for this legislation to come forward and it is still discretionary. Local authorities will pursue the route that has been outlined because it is the proper thing to do and they will base their services on local need, which they are well versed in meeting.
The Government are always over-cautious, defensive and wrong in their attitudes and actions in relation to disability rights. There have been some shameful incidents—for example, my hon. Friend the Member for North-East Derbyshire (Mr. Barnes) proposed a private Member's Bill which provided for positive and clear action for people with disabilities, but the Government watered it down. As my hon. Friend the Member for Monklands, West (Mr. Clarke) said, there are 6 million disabled people in the United Kingdom. We are approaching an election and those people will not forget how the Government treated that private Member's Bill.
People with disabilities are no longer prepared to fight in isolation or in separate groups: they now work together—they will no longer be divided and ruled, as they were in the past. A strong coalition works with disabled people in Bradford. I pay tribute to the disabled people who have travelled here to the various lobbies to ensure that their voice is heard. I also pay tribute to groups that work with people with disabilities. Many hon. Members have paid tribute to the Disablement Income Group and its excellent publication outlining its policy in relation to the Bill.
That group helped the Government to establish the independent living fund. As hon. Members have said, the fund proved conclusively that we are able to empower disabled people to develop their choices and arrangements. By 1993 the fund was making regular cash payments to more than 21,000 people and had an annual budget of £97 million, but that level of spending was going to cause a great deal of concern—and I note that the Chancellor has left the Chamber. That fund showed how disabled people could be empowered to control their lives in a way that would otherwise not have been possible.
Local authorities were looking to be creative in providing cash payments to people, but the law was ambiguous. Legal advice indicated that cash payments were permissible under the Chronically Sick and Disabled Persons Act 1970, while others were forbidden by the National Assistance Act 1948—there was a great deal of confusion. Lobbying during the passage of the National Health Service and Community Care Act 1990, to which the hon. Member for Mid-Kent referred, ruled those payments to be illegal. It did not help at all. There was understandable frustration and anger because people's problems were not being fixed. Labour Members have said that disabled people want care when they want it and in a way that affects their lives—they need it to be tailored.
All hon. Members agree that direct payments can achieve increased empowerment and improve the quality of life of disabled people. However, there can be problems 416 in the recruitment, selection and suitability of the personal assistants to he employed. There need to be strong support mechanisms for efficient and effective use of the payments. Good-quality and appropriate advice is essential in employment and related matters. We must ensure that support mechanisms are in place. I refer to the meaning of "independent living" as defined by disabled people at a symposium in Finland:Independent living is a process of consciousness raising and empowerment. This process enables disabled persons of all ages and with all types of disabilities to achieve equalisation of opportunities and full participation in all aspects of society. Disabled people must be in control of this process. Meaningful choices must be available in order to exercise control.That fundamental definition embodies the philosophy that we must adopt. We can no longer say that we want to do things for or to disabled people—they must have the right to choose and to determine, where possible, what can be done with them as opposed to for them or to them.
The Bill gives local authorities discretionary powers to make payments, but there is a concern about the relationship between direct payment and the existing local authority provision. There are also cuts in the local authority budgets—my local authority in Bradford has had successive cuts year after year because of the failure of central Government. This must be looked at when we examine the detail of direct payment as opposed to the provision of the wider service.
The use of the special transitional grant also needs to be examined and a suitable balance must be reached. I hope that the Under-Secretary of State for Health will look at the problems that have been raised—he has said that he will do so following the consultation—about discrimination in disabilities. People with disabilities have enough problems without there being discrimination in relation to each disability. Ministers need to make up their minds to support the broad spectrum of disabilities. I believe that in Committee we shall iron out many of the problems contained in the Bill. I hope that the Minister will look at the arguments that have been put to him by hon. Members, by local authorities and by disabled groups.
Experienced local authorities can make assessments and they are in a good position to ensure that the test is adequately applied—that the person who is receiving the direct payment can manage it appropriately. I hope that the Minister will take into account the argument about relaxing the exclusions. The Bill appears to be too restrictive in relation to the employment of family members. I understand the proximity argument, but there is potential to look at a wider remit and there should be flexibility in relation to special needs and special circumstances. Experienced local authorities have the credibility and the compassion to deliver the choice of direct payment or the provision of service, whichever is most suitable.
Local authorities must be adequately funded, and this issue cannot be looked at in isolation—we have to look at all the services that local authorities may provide. My local authority is currently having difficulty because it has to increase its charges for social services, much to the annoyance of those who receive them. With the passage of this Bill, there will be an opportunity to soften some of the blows in relation to price increases when we look at tailoring the direct payment.
The Bill is a step in the right direction. We have been congratulating each other on getting the Bill to this stage, but the battle is not over. We must ensure that people with 417 disabilities are treated in a proper manner, that they are able to live their lives to the fullest extent and that they have a quality of life that takes them down the employment route with the fullest support from society.
In Bradford an opportunities for life fund has been established for young people with disabilities. It encourages employers to take on people with disabilities and provides supportive mechanisms. It makes a difference to people's lives. I believe that the Bill is a step in the right direction, but there is a long way to go.
§ Mr. Harry Barnes (North-East Derbyshire)
The Bill has an enticing trailer in its explanatory and financial memorandum. Like all trailers, it picks up the best bits and puts a spin on them in an attempt to make people watch the film. Just as films do not always live up to their trailers, the Bill is disappointing in that it does not live up to the explanatory and financial memorandum, the first paragraph of which states:The purpose of the Bill is to enable local authorities to make payments to people to enable them to purchase for themselves community care services which they have been assessed by a local authority as needing.It sets out the scope of the Bill, which has the support of the House.
Hon. Members have covered the Bill in considerable detail and pressed the Minister on various issues. Even the Minister seemed unsure as to whether the regulations would accommodate their proposals. The pressure has been in one direction, so why is there a problem? The problem is that the Bill is an enabling measure. Enabling measures always worry me. I was on the Standing Committee on the Education (Student Loans) Act 1990, which was also an enabling measure to which regulations have since been attached. The legislation was inadequate because it was always envisaged that regulations would have to be added.
When I speak strongly against enabling measures, I generally point out that Adolf Hitler liked them and that they are advocated by the Militant tendency. I recognise that the Bill does not belong in that category as it is a positive measure which breaks down barriers and opens up possibilities. Even if we have a weak version of the Bill and weak regulations are attached to it, it will represent an advance and we may be able to build on it in future. However, the more concessions we gain, the easier it will be to support the measure on Third Reading instead of regurgitating the concerns which have been expressed today and will be raised in Committee.
The enabling aspects of the Bill require clarification. To whom does it apply? We have been told that 30,000 households may be eligible for assistance under the Bill. Clause 1(1) goes some way towards defining who should be included. Unfortunately, subsection (4) provides for the exclusion of certain categories, such as those over 65, so even the definition of those who are covered by the Bill needs clarification.
The definition in the Bill is taken from section 47(2) of the National Health Service and Community Care Act 1990 whereby a local authority can make an assessment of someone ifit appears to a local authority that he is a disabled person".418 There is an argument about who may appear to be a disabled person and whether we should strengthen the provision to extend the potential take-up of the Bill.
That has been a common problem in the discussion of disabled people in debates on the Civil Rights (Disabled Persons) Bill in 1995 and the Disability Discrimination Act 1995. The Civil Rights (Disabled Persons) Bill would have affected some 6.5 million people, but the Government never told us how many people would be covered by the Disability Discrimination Act. We may be in danger of being in the same position here. A wider definition would be appropriate.
The current definition of those who appear to a local authority to be disabled persons is qualified under subsection (1)(b) which relates to those who are specified under regulations made by the Secretary of State. The measure is shot through with provisions relating to regulations, but we have yet to find out what those regulations will contain. That is unfortunate. As we debate measures, we should have a clear understanding of the areas that are covered before those measures become law. We have only a creeping understanding of the Bill. We can only hope that the Minister will respond to pressure and extend its scope. We need more precision and understanding. "The Hitchhiker's Guide to the Galaxy" refers to clearly defined areas of doubt and uncertainty. Any clearly defined area would be helpful in our consideration of the Bill.
As has been pointed out, the British Council of Organisations of Disabled People referred to the take-up of direct payments and stated that 60 per cent. of councils operate the system, albeit indirectly, and 90 per cent. have promised to do so when the Bill is enacted.
One crucial word will be debated extensively in Committee. That is the permissive term "may" which is used instead of the definite term "shall". Despite the pressures from local organisations, that permissive provision remains inadequate as the direct payments system could operate readily and well in some parts of the country while in other areas disabled people may be unable to exercise their rights. We must tackle that potential inequity.
A permissive right may cause difficulties for local authorities. If their accountants work out that administering direct payments instead of providing the services results in a net loss, local authorities will be under pressure not to pick up the permissive provision. They will have to measure the financial consequences against pressure from organisations for disabled people. Obviously that would not apply if local authorities were given sufficient resources. We should help to remove that choice.
Subsection (4) allows for the exclusion of certain categories. Hon. Members have referred to those who are over 65. One of my constituents contributed evidence to the consultation document. His concerns are at the other end of the scale. He has an 11-year-old daughter who will eventually be eligible for direct payments. He is concerned about her future. What he said would have made an excellent speech today—probably better than mine—to illustrate the difficulties that must be addressed in the Bill.
I am concerned about the exclusion of those over 65, and about access to direct payments by future generations of disabled people. I am particularly 419 concerned about the problems of those who suffer from learning difficulties. I understand that there is an additional problem in that the Bill does not contain the same provisions as the Disability Discrimination Act 1995 which provided for people with learning difficulties to have the details of its provisions presented in an accessible fashion.
Many other aspects of the Bill need to be clarified and enhanced. In the other place, Baroness Cumberlege gave details on Third Reading of a host of matters that she promised would be taken up in some way—for example, the idea that reports should be presented to Parliament every three years after enactment and that support in the form of guidance be given to recipients of the direct payments so that they can handle their responsibilities as employers, an important matter that has been dealt with at great length. A number of other topics will also be the subject of guidance. Reports, guidance provisions and details of eligibility, which Baroness Cumberlege mentioned, are matters that we, as serious legislators, should ensure are in the Bill so that solid decisions can be made.
The trailer to the Bill, as I described the explanatory and financial memorandum, contains other items of fascination. Towards the end of the trailer we are told that the financial effects of the Billwill be implemented within existing resources.The problem is that the Government are rather good at passing legislation that imposes responsibilities on local authorities without supplying authorities with the resources that they need to fulfil their obligations. That has certainly been the case with community care and it is a key issue in this instance. Adequate ring-fenced funding that is properly provided in, for example, standard spending assessments is something that needs to be tackled.
At the end of the explanatory and financial memorandum is a paragraph headed, "Effect of the Bill on public service manpower". Interestingly, it states:It is expected that any effects will be small.It seems that the Government are anticipating that this is, finally, a small mouse of a measure and will not be picked up and run with to the extent that it should be. I hope that we can change some aspects of the Bill so that a fresh trailer has to be presented in order that the measure can be sold, although I accept that it contains some positive provisions.
No Northern Ireland Members of Parliament are here tonight—they have other things on their minds at the moment—but I know that there is considerable concern in Northern Ireland across all political parties about the rights of disabled people. Indeed, among the sponsors of my Civil Rights (Disabled Persons) Bill in 1995 were members of four different political parties from Northern Ireland, and various Civil Rights (Disabled Persons) (Northern Ireland) Bills have been produced.
The Bill, however, excludes Northern Ireland. The only part of the Bill that refers to Northern Ireland is clause 6 which states that an Order in Council will be laid. Although Northern Ireland was not initially included in the Disability Discrimination Act 1995—or perhaps only in the same terms as in this Bill—the strength of feeling in Northern Ireland was such that that situation was changed and new provisions relating to Northern Ireland 420 were included. A complex addition was made in order that that measure should apply to Northern Ireland—a problem that is usually avoided by the Order in Council provision.
Another of the Bill's inadequacies in respect of Northern Ireland is that whereas the regulations intended to be produced for England, Wales and Scotland are to be introduced under the affirmative procedure so that the House has an opportunity to vote on them, provisions for Northern Ireland are brought in under the negative procedure, presumably because of the complexity of the Order in Council system. That means that there has to be an attempt to force the regulations relating to Northern Ireland to the Floor of the House for debate.
Of the hon. Members who have contributed to this debate, six served on the Committee which debated the Civil Rights (Disabled Persons) Bill in 1995 and showed their solid commitment to its principles and the desire to obtain full civil rights for disabled people. One would therefore expect them to advance the provisions of the current Bill so that they become general rights available for all rather than rights restricted by provisions that the Minister will introduce in regulations.
§ Mr. Piara S. Khabra (Ealing, Southall)
Because of the shortage of time, I shall be as brief as possible. I am grateful for the opportunity to say a few words in support of the Bill which proves that, given time, even this Government can produce legislative proposals worthy of support. I do, however, have one major criticism, and join the other hon. Members who have criticised the exclusion of people over the age of 65.
As someone who is over 65, I was disappointed to note that people over that age will be excluded from the Bill's provisions. Given that the majority of disabled people are over 65, this is blatant age discrimination by the Government, which I deplore. Age should not be a criterion for reducing payment to someone who needs to purchase care services. I hope that the Government will rethink their stance on this issue in Committee.
With the qualification about the age limit, I welcome the principle behind the Bill, as it is a significant extension of the rights of disabled persons which will enable them to exercise real control and choice in their lives. The first significant change which I predict will result from giving disabled people this economic power will be a change in the culture of the care service providers as their operation becomes more responsive to the user. That is to be welcomed, as it underlines the important principle that a disabled person can exercise his or her rights and is not merely the recipient of welfare, which, sadly, has been characteristic of some care services in the past.
As the Member of Parliament for Ealing, Southall, I represent a significant Asian population which has a different language and culture and many different needs compared to what in broad terms, is called the white population. I therefore suggest the need for care providers to be sensitive to the needs of that client group and for the councils that regulate the care providers to understand the cultural sensitivity of the population when they receive any complaints or any comments. That leads me to stress that, with the extension of what will become a market in the provision of care services, there must be strict regulation of the care service providers.
421 I press the Government to ensure that a properly funded regulatory system is put in place to avoid abuses by crooks or cowboy operators who are out to exploit vulnerable people. That system should be complemented by resources to enable local councils to produce information on the new arrangements so that people who are in need of community care services can choose to purchase those services, if they wish. The information should include the scope of the services available, details of the support services available to disabled persons to help them to use their new rights and details of the period in which applications are expected to be approved.
I make a plea for the guidelines to be drawn up in partnership and consultation with organisations for disabled people so that they are not produced purely by the councils, because some local authorities may be tempted to do that. When a person is unhappy about the help given by the council, there should be an appeals procedure which falls within the ambit of the existing appeal procedures and the ambit of the local government ombudsman on grounds of maladministration.
I turn now to the thorny issue of finance. The new system must not be used as a cover by the Government for a cut in the support that they give to local authorities. Any cost savings to local authorities due to user-operated commissioning procedures will be balanced, in my judgment, by the additional expenditure by local authorities on bureaucracy and support for service users, for which there is currently no financial provision.
Finally, I wish to reiterate my support for the Bill as a significant step forward for the rights of disabled people—which the much trumpeted Disability Discrimination Act 1995 was not—and to ask that its provisions be extended to include people over the age of 65.
§ Mrs. Maria Fyfe (Glasgow, Maryhill)
I pay tribute to the First centre for the disabled which serves the needs of men and women with disabilities in the constituency of my hon. Friend the Member for Glasgow, Springburn (Mr. Martin) and in my constituency. Both of us regularly attend the centre's annual general meeting and we assist by counting the votes in the elections for its office bearers, because we are the only people who attend who do not have a vote.
The First centre for the disabled is so called because it is the first of its kind in Scotland. If there are no such similar places in England, that is a great pity and I suggest that hon. Members visit the centre to see for themselves what excellent provision can be made. The point about the centre, and the reason why I have mentioned it in this debate, is not only that it provides a wealth of activities that may surprise anyone who does not know what can be opened up to the participation of people with disabilities, but that it was planned and campaigned for by people with disabilities in the north of Glasgow. Before they had the centre, they had nowhere to call their own. The centre is a first-class example of what people can do for themselves. It is an eye-opener and I recommend a visit to any hon. Member and a party of his or her disabled constituents. They would be made very welcome and would be inspired.
422 My hon. Friend the Member for Ealing, Southall (Mr. Khabra) raised the question of resources. I hope that the future of the centre is safe, because the City of Glasgow council is facing horrific cuts in its budget as a result of the Government's local government finance policies. For example, many community education centres are facing closure. It would be completely unacceptable if, after the long struggle to create the centre, there was any diminution in the services that it provides. That would be an absolute scandal, because the people whom the centre serves had so little until recently.
We should consider the general history of how this country has treated people with disabilities. For many years, needs were ignored. Then came a better period in which provision was treated as a kindness, and consideration for disabled people was the name of the game. In the past few decades, people with disabilities have campaigned for themselves and that has won dignity for them. Self-determination is the key, not only to the Bill but to any aspects of the lives of people with disabilities. The Bill should provide disabled people with wider choices—choices that we who do not have any disabilities take for granted.
In my constituency, there are a number of elderly Asians and Asians with disabilities. That creates especial difficulties for them which must be addressed by ensuring that they have access to services and that their views and needs are respected. They, too, should have the right of self-determination.
As drafted, the Bill would allow the Secretary of State to limit the groups of people who would be able to participate in the new direct payment services. The Government have stated that they do not intend to include people with learning disabilities at the start. I have read a briefing from Mencap on the subject, which rightly pointed out that it is important that people with learning disabilities have the same opportunities to benefit from the scheme as people with other disabilities. People with learning disabilities, however severe, are often capable of making choices about what they want and with whom they want to be. Obviously, they may need help to identify and manage their options, but unless people with learning disabilities are part of the process from the beginning, the potential problems, benefits and possible adjustments needed can only be guessed at.
Under the Bill, no direct payments will be made to anyone in long-term residential accommodation. That rule might seem sensible, but if it is applied inflexibly, it might inhibit the progress of young disabled people who have hopes of moving into the community and living more independently. They should be given transitional help.
The new system should not serve as a cheap or easy option for some local authorities, especially given their financial constraints, by allowing them to cut their services—particularly in remote areas. The measure should not become a means of passing responsibility for an underfunded, failing community care system to disabled people. They may be unable to manage their budgets due to inadequate funding, which could be extremely demoralising and threaten their independence.
If a disabled person wants to use direct payments to employ a care assistant, he or she should not have to assume responsibility as an employer for tax, national insurance and similar liabilities—but could be allowed to do so if he or she wished. When one considers that some 423 employers who undertake those responsibilities as a daily task experience difficulty, we should be cautious about imposing them on people who might otherwise never have them. Hon. Members who complete their tax returns will have some idea of the difficulties.
Domiciliary services ought to be of high quality throughout the country, and their users should be treated with dignity, respect and courtesy at all times. There must be mechanisms to ensure that any deficiencies in the standard of care, or abuses of the recipients of that care, are brought to light. Problems should not be hidden away because of developments arising from the Bill.
Clients of domiciliary care are among the most vulnerable members of the population, yet they are currently afforded little protection in their own homes compared with people in residential care. I want a statutory framework of national minimum standards of domiciliary care for elderly and disabled people. I do not mean a rigid list of services that users must accept whether they like it or not; I mean a menu of choice incorporating minimum standards. The Employment Agencies Act 1973 is inadequate for ensuring the standards that we are debating. I agree that the key to the future of domiciliary services is the statutory registration and inspection of private agencies.
§ 9.1 pm
§ Mr. Michael Connarty (Falkirk, East)
I am glad to return to the House, despite prior engagements, to participate in this debate. I know from a visit with the Minister that he is caring and tries to do his best when he has control over policy. However, having read the briefs and debates in the other place, I believe that he may have problems, because it is not him with whom we have to deal but the Government. I am by nature a person who is suspicious of any authority.
The Bill is welcome to the extent that 72 per cent. of disabled people want more independence. I have said before that language is important, and I often feel that the phrase "disabled people" is wrong. People with disabilities who overcome them are no longer disabled. I have experience of that, because for 14 years before entering the House, I taught children with learning difficulties who faced a physical or intellectual challenge. Fifty-nine per cent. of people with disabilities believe that legislation that gives them cash in their hands to use in a way of their choosing frees them from their disabilities in some respects, so the Bill is welcome.
My noble Friends and Government Members in the other place were concerned that the regulations were not specified. It is odd for a Bill to come before the House when consultation on the relevant regulations has not been completed. Because the Government are so bereft of legislation this year, obviously they had to introduce the Bill before the consultations were completed, which is a back-to-front way of operating. I accept that specific details cannot be put on the face of a Bill, but lots of people are wondering what will come out of the consultation. Will it reflect the wishes of people with disabilities, or will the Government again be guilty—as they have been for 16 years—of asking for opinions but not changing their views? I see the Minister of State, Scottish Office on the Front Bench. He knows what happened over the Local Government (Scotland) Bill, where consultation was completely and utterly ignored 424 and the Government went ahead with their mad scheme anyway. We have experience of a Government who consult and then ignore the wishes that have been expressed. The Bill is welcome, but with that reservation.
Another matter that worries people are the exclusions. I hope that the Minister will take on board the fact that 37 per cent. of the clients of the independent living fund—the only benchmark we have as to how people will spend money that is given to them—are over 65. Yet that group will be excluded from the scope of the Bill. There is some contradiction there. Any consultation should also be based on an historical study. If 37 per cent. of users of the ILF are over 65, surely that shows that they are the people who feel best able to use cash in their hands. They usually have experience of life; sometimes they have a caring partner with experience of management in professional life. Yet they will not have a chance to use the scheme. The Government should think again about that.
I am personally interested in people who have learning disabilities. I do not think that we should always just draw on our own experience and use empiricism. I taught people with learning difficulties for long enough and, as the constituency that I represent is in the same area, I now meet those people as adults. They are quite capable—with the support of family, a community group or local authority staff, or even a voluntary agency—of putting together a life plan. Many people with learning disabilities now leave school with a record of achievement and go on to demand training and a balanced life, and are not just stuck in a corner, as many people once thought they should be. Yet, under the Bill, they will be excluded from use of the new fund.
In the study made by the independent living fund—an historical study worth looking at—18 per cent. of its awards went to people with learning disabilities. So often, we see people who might be said to have learning disabilities, for example, those who are profoundly deaf, yet we see people like Evelyn Glennie, who is a world-renowned percussionist, despite being profoundly deaf. People with cerebral palsy are now able, through the use of modern computers, to write not just diaries but important philosophical works, as Professor Stephen Hawking has proved. When someone overcomes a disability, he or she is no longer disabled. A learning disability can be overcome as well. We have every right to be concerned that that group is to be excluded.
Disability Alliance made a point of sending all of us a brief, which I am sure the Minister received and read with interest, arguing that those categories should not be excluded. My hon. Friend the Member for Kingswood (Mr. Berry) said earlier that discrimination against groups of people is being written on the face of the Bill. Given the debates that have taken place in the House over the past four or five years, surely the Government should avoid that.
Another category is mental health service users—sadly, a growing category. All of us have experiences in our constituencies of people who require mental health services. Again, we should be worried if there is any question of those people being excluded from cash payments. Disability Alliance could not furnish us with exact figures of where the independent living fund has been made available, so in a sense that is a deficiency in the present independent living fund that could be made good by the Government if they would accept sensible amendments to the Bill. Those two matters concern me.
425 Something that also worries me is the idea that the Government might want to detach a number of people from the communal provision that social services are able to put together. It is being touted as a privatisation issue, when Opposition Members and those who spoke in favour of it would see it as a liberalisation provision.
Constituency experiences involving the independent living fund cause me to worry about whether there is any break with the social services in plans for the use of the cash. One of my constituents, who has looked after a severely ill wife with a debilitating disease, told me that, when he examined his expenditure, he found that 30 per cent. of what he was spending on services from the independent living fund paid agencies' administration fees. He was distressed by that—and, indeed, the idea that people must choose between the social services and agencies must give us all cause for concern.
Given the ethos of his Government over the past 16 years, the Minister will admit that, if there is money around, someone in the private sector will try to make a profit. I should like to think that the regulations will allow arrangements similar to those governing the life plan—the post-school training and education plans—for the young people whom I used to teach. Those arrangements were made with the education authority; subsequently, the plan became the responsibility of the young person concerned. Similarly, those intending to take the cash for community care rather than receiving the service directly should work out a plan with the social services and their carers or support groups.
Charges have been a problem. I hope that the Minister read section D of the brief from the Carers National Association. According to recent research by the association, one in five councils have increased their charges by 10 per cent. or more in the past year, and one in four carers are experiencing hardship as a result of such increases. People have been cancelling services that they need for that reason.
One of the factors that underlie the Government's philosophy is their assumption that authorities will raise 9 per cent. of their income through charges. The Carers National Association, and Opposition Members, fear that people will be driven to take cash in hand because of the expense involved in direct use of local authority services. They will look for a cheaper option, which may be offered by agencies. Despite their slick presentation, the service provided by those agencies may not ultimately match the needs of disabled people.
The association drew attention to a recent report by the National Consumer Council, which examined the way in which authorities across the country were drawing up and administering charging policies. The report concluded that charging guidance from central Government was ambiguous. The Minister should take that on board, and, if possible, clarify the question of charging in the regulations. That would deal with the complaint that the local picture is often very confused.
The report says that, in particular, guidance should be given to people on income support and other means-tested benefits. It is often difficult to make such benefits go far enough and, if cash in hand is provided to meet specific needs, budgets may become mixed up. As my hon. Friend the Member for Monklands, West (Mr. Clarke) pointed out, 426 budgeting may not be the greatest strength of people with debilitating illnesses or long-term problems, who may be concentrating on their medical care and consequently find themselves in financial trouble. We must also take into account those receiving attendance and disability living allowance. Given the rather frightening signals from the Department of Social Security, which wants to save a further £1 billion, people who think that they are receiving more money may, in fact, suffer from the removal of finance from another part of the social security budget.
I have a naturally suspicious nature, and I have noted the way in which the Government have handled the amounts going to people in need in my constituency. I have also read the briefings. I hope that the Minister will reveal the results of his consultations in Committee, and will tell us then exactly what the regulations will say. If he does not, although a welcome step in the right direction will have been made, we may be walking into the mire in a way that we shall all regret.
§ Mr. Alan Milburn (Darlington)
For the benefit of the House, I should declare at the outset that I receive research assistance from Unison, although I am not representing its views in this debate.
The debate has been especially well informed and considered, and overwhelmingly consensual, with hon. Members often drawing on local experience and their interface with local disability organisations. We have had on display an array of national talent and expertise on issues affecting disabled people.
In some senses, it is slightly invidious to single out particular Members for attention, but I should like to pay tribute to the hon. Members for Brighton, Kemptown (Sir A. Bowden), for Bolton, North-East (Mr. Thurnham), and for Mid-Kent (Mr. Rowe), and to my hon. Friends the Members for Stratford-on-Avon (Mr. Howarth), for North-East Derbyshire (Mr. Barnes) and for Wakefield (Mr. Hinchliffe) for their long-standing commitment to disabled people's rights. We have had important speeches from those hon. Members, and from all who have spoken.
The Bill has been broadly welcomed by hon. Members on both sides of the House. It has been long desired both by disabled people and by the organisations that represent them. We have come a long way since the pioneering work of the early 1980s in Hampshire to encourage independent living among disabled people. That experiment has found an echo throughout the land.
By 1990, the Royal Association for Disability and Rehabilitation found that more than 60 per cent. of local authorities were operating some form of direct payments scheme—albeit through third-party agencies—despite the somewhat doubtful legal status both of their establishment and sometimes of their operation. The Bill legalises the direct payments approach, and at last gives official sanction to a new and highly popular form of community care.
The success of the independent living fund is but the most graphic illustration of how an approach that maximises user choice resonates with disabled people. When the ILF was established, it was estimated that only around 300 new awards a year would be made, but, by 1993, as my hon. Friend the Member for Bradford, South (Mr. Sutcliffe) reminded the House, 22,000 people were receiving payments. The Governments's decision to close the ILF in 1993 flew in the face not only of its popularity, but of its achievements.
427 A 1994 study for the Policy Studies Institute and for the British Council of Organisations of Disabled People summarised the benefits that flowed from the ILF. It said:enabling disabled people to organise their own support arrangements offers considerably more choice, control and flexibility than direct service provision; consequently, direct payments are seen as greatly increasing disabled people's independence.Tragically, the Government have a history of coming only belatedly to recognise the case of disabled people for improved rights. Organisations such as the Disablement Income Group, the Disability Alliance and the British Council of Organisations of Disabled People have long campaigned for such a Bill. They have received handsome support from organisations as diverse as the Association of Directors of Social Services, housing and local authority associations and many others, including the House of Commons Select Committee on Health.
There is almost universal agreement that direct payments are a positive and innovative development that secures better delivery of community care services. They make the disabled person the centre of the care system rather than its dependant. That point was amply made in a telling contribution by my hon. Friend the Member for Stratford-on-Avon.
The first choice of most elderly and disabled people is to live independently in their own homes, and to feel part of the community. For care in the community to succeed, it must enable all people to live with the same respect for their dignity and autonomy. Direct payments allow services to be suited to the needs of the individual, rather than the individual having to suit the needs of the services. In other words, direct payments empower service users by allowing the user to shape the service rather than be shaped by it.
It is not only disabled people who benefit from direct payments. The taxpayer can also be a net gainer. The right hon. Member for Chelsea (Sir N. Scott) told us that it is reckoned that direct payments result in average savings of between 30 and 40 per cent. on comparable service provision. When a disabled person is commissioning services it puts him or her in charge, gives real choice and provides cost-effective care.
The principles of the Bill are a matter of political consensus, which I welcome, but its fine print is a subject of real dispute, and the fine print has dominated our debate. In the first place, it is regrettable that the Bill was introduced in another place before the publication of the consultation document outlining in much more detail the Government's thinking on many of the specifics of the Bill.
It is also a matter for regret that the results of the consultation exercise, which finished last month, have still not been made available. Inevitably, the debate has sometimes felt a bit like a shot in the dark, with hon. Members on both sides of the House having to second-guess what is in the minds of Ministers about the final detail of the Bill.
My hon. Friend the Member for North-East Derbyshire rightly called the measure an enabling Bill, and was therefore cautious about it. Similar suspicions were voiced by my hon. Friend the Member for Falkirk, East (Mr. Connarty).
I believe that it is not beyond the wit of the Under-Secretary to arrange the consultation exercises and the debates on the Bill so that those who debate it both here 428 and in another place can fully consider the facts. I hope that he can at least give us an assurance tonight that the results of the consultation exercise will be published before the Bill goes into Committee. Otherwise, we shall continue to rehearse backwards and forwards all the arguments we have had over the past few hours, and still be taking a shot in the dark.
It is especially important that the principle of openness applies to the Bill, because, as we know, it is planned to make so many of its detailed provisions by regulation rather than by primary legislation. None the less, several concerns are already clear. They have been flagged up by the disability organisations, by my noble Friends in another place, and by hon. Members on both sides of the House tonight.
The major concern expressed by organisations such as the Law Society, the British Medical Association, the Royal National Institute for the Blind, the Carers National Association, MIND and the Disability Alliance relates to the artificial restrictions imposed on the categories of people who will be eligible to receive direct payments under the Bill. That concern was made clear by the hon. Members for Bolton, North-East, for Mid-Kent and for Brighton, Kemptown, my hon. Friends the Members for City of Durham (Mr. Steinberg), for Nottingham, East (Mr. Heppell) and for Ealing, Southall (Mr. Khabra), and my right hon. Friend the Member for Manchester, Wythenshawe (Mr. Morris).
The whole point of the Bill is to put disabled people and their needs at the centre of the care system. It is about treating the individual as an individual, regardless of their disability. Instead, the Government seem to be determined to disempower individuals according to the category of disability that they have been placed in by the Secretary of State.
Surely it is entirely incompatible with the whole thrust of the Bill, and with what the Minister said earlier, to deny the choice of receiving direct payments simply because an individual is either too old or too young, or has the wrong sort of disability according to the Secretary of State's arbitrary diktat. We believe that anybody suffering from any disability may be suitable, and should be eligible, for direct payments rather than services. We have much sympathy with those who argue that direct payments should be available in every local authority area to ensure equal access to the benefits that flow from them.
Since direct payments will represent a departure for some authorities, however, we are willing to concede that there should be no mandatory obligation on councils to offer them, providing that two key concerns are met. First, the Minister should actively encourage local authorities to introduce direct payments, and secondly, all classes of disabled people should be allowed access to them.
If we are serious about treating individuals as individuals and about shaping services to meet individual needs, it surely follows that age or disability should form no barrier to qualification for a direct payment. After all, someone who is in their late 60s may be much better qualified to take advantage of a direct payment than someone in their early 30s. Similarly, someone with a moderate learning difficulty may have a greater capacity and willingness to deal with direct payments than someone with a severe physical disability, which leaves them frail, poorly and sometimes confused.
429 The tests for direct payments should be solely about whether the person is in need and has been assessed as requiring community care services and whether direct payments represent value for money for the authority and are in the best interests of the individual who is able and willing to take advantage of them. Those should be the tests—no more and no less.
Instead, the consultation document issued by the Department tries to make the Secretary of State's discretion predominant in determining who will gain access to what we all believe is an innovative and exciting means of putting disabled people at the centre of the care process. Frankly, such arrogance flies in the face of a needs-led approach to the care of disabled people. I hope that the Minister will carefully review the matter, not only in the light of the 300 responses to his consultation document, but because of what he has heard in the debate. A consensus has been established, and I hope that he will listen.
I should like to highlight two issues. First, given that community care services are available to people over the age of 65, an age limit seems especially unnecessary and unfair. More than one third of clients of the former ILF were aged over 60 in any case, and research into current local authority payment schemes shows that only two out of the eight authorities studied explicitly ruled out people over the age of 65.
Similarly, as the ILF has given 18 per cent. of its awards to people with learning disabilities, excluding them from direct payments is equally unfounded. It also contradicts, as my hon. Friend the Member for Stratford-on-Avon reminded us, the recent Law Commission recommendation that there should be a presumption against lack of capacity.
There remains a real worry—again, I hope the Minister will address this when he winds up—that unless the Government relent and broaden the eligibility criteria, some people will lose the direct payments that they are currently enjoying through third-party agencies. It is surely not the Government's intention to narrow or remove opportunities that disabled people currently enjoy. Yet the eligibility criteria as defined in the consultation document do precisely that.
The Opposition will not accept the undermining of the Bill's purpose by its proposed means of implementation; nor will we accept the denial of real choice entailed in the Government's restriction of direct payments to certain groups of selected people. That is why we will be tabling amendments to the Bill to ensure that real choice is available to as wide a range of disabled people as possible.
We shall also be seeking to broaden choice in other ways. These take several forms. To allow people to make informed decisions about whether they wish to receive direct payments for certain services, it is vital that advice and information is provided to them. Under the Bill, hundreds of disabled people could become employers for the first time. They will need support.
As my hon. Friends the Members for Wakefield and for Bradford, South pointed out, the lesson from the independent living fund is that the best-run schemes were on the basis of the advice and support available to the 430 disabled people who had access to the funds. The Bill must ensure that such services are available to disabled people—should they require them—to maximise choices about whether direct payments are an option for them.
Choice should be maximised by ensuring that the distinction that the Government rightly make between formal and informal care is not drawn so tightly that a disabled person is prevented from employing any family member on a paid basis. Of course we do not want informal care to be brought into a cash-for-care arrangement, but we recognise that disabled people will want to employ those they know and trust, particularly when it comes to the performance of intimate tasks for them. In some cases, they may have little choice in any case, because of where they live, their domestic arrangements or the nature of their disability. The consultation document's virtual blanket ban on employing any relative runs against the grain of the needs of those disabled people. We hope that the Minister will concede that the proposals are too prohibitive, and need to be reviewed.
It is vital that choice is not restricted by adverse charging policies. The Bill proposes to treat service users and cash users on an equal basis, so, just as an individual is charged for a service, he will also have to make a financial contribution towards the equivalent direct payment. There can be no argument about that, but we have a number of concerns. I hope that the Minister will be able to clarify that certain social security benefits received by disabled people should be disregarded in calculating the amount of direct payment or financial contribution that an individual is expected to make.
I also hope that the Minister will make it clear that direct payments are to be used for social care services only, and will not be used as a substitute for health service responsibilities. That distinction is vital, since otherwise direct payments received by disabled people will be means-tested even if they have to be used to purchase services that they should be receiving free of charge.
I also hope that, as my right hon. Friend the Member for Wythenshawe said, there will be a level playing field between community care services and direct payments in lieu of them, so that no means test is involved if direct payment is made where the equivalent service is provided free. That assurance would be extremely welcome.
Finally—and most fundamentally of all, in my view—the proposal to leave it up to individual local authorities to decide how to take into account service users' financial status when setting the level of direct payment is, frankly, a charter for confusion. The care that a person receives and the price he pays should not depend on where he lives.
Last year, a National Consumer Council report on local authority charging procedures found that charging systems for non-residential social services were structured differently in virtually every local authority area. The NCC found also that widely different criteria were used by local authorities to assess people's ability to pay. It would be tragic if the same situation developed for those receiving direct payments for care. Is it not now time for a national framework for charging policies for social care, to end what has become a lottery?
Disabled people living in Dorset should be entitled to the same financial assessment as disabled people living in Durham. After all, their needs will not differ even if the respective areas are different.
431 The Bill provides a golden opportunity for the Government to consider ending the restriction on choice that applies to so many community care users merely because there is such latitude in the ways in which local authorities are allowed to charge for services.
The Bill provides an opportunity for the Government to take further action. Although those receiving direct payments may decide to purchase care from a number of sources, the Bill will almost certainly lead to increased use of services provided by independent sector domiciliary care agencies. There should be no objections to that, provided that the services offered to disabled people are of the highest quality and standard.
There lies the nub of what might be a problem. When other care providers are subject to greater registration requirements and inspections, there is still no statutory framework governing the operation of domiciliary care providers, despite the fact that the services they provide are made available in an individual's home, and are therefore subject to much less scrutiny.
The clients of domiciliary care agencies are among the most vulnerable people in the population, yet the protection afforded to them in their own homes is negligible compared with that which is available to clients in residential care. That is why organisations such as the British Medical Association and the Association of Directors of Social Services, in responding to the Bill, have called for the regulation of providers of domiciliary care. Their calls have been echoed this evening by the hon. Member for Mid-Kent and by my hon. Friends the Members for Glasgow, Maryhill (Mrs. Fyfe) and for Wakefield. I hope that the Registration of Domiciliary Care Agencies Bill, introduced by my hon. Friend the Member for Wakefield, will be considered by the Minister in the light of the Bill before us.
The calls to which I have referred have been repeatedly echoed by Labour Members. I know that these calls have been taken up by many providers in the private sector. Domiciliary care agencies that have taken up these calls recognise that they are providing care for extremely vulnerable people, individuals who have few opportunities to raise concerns about services and who need protection from unscrupulous operators. It is in the interests of us all to drive the cowboys out of the industry. Everyone wants to see that happen.
The Bill brings to a head all the tensions about the lack of a regulatory framework for private domiciliary care. I know that the Minister will say that he has only recently finished consulting on a Government document designed to move things forward, and that it is too early to give any categorical views on what the Government have in store for the future registration and inspection system. However, I believe that it is incumbent upon him to give some assurances this evening that it is at least in his mind to provide a proper form of regulation for domiciliary care. We are dealing with extremely vulnerable people receiving services paid for from the public purse in their homes. Both public money and disabled people deserve proper protection.
The Bill is a great opportunity radically to improve services for disabled people. Our proposals for strengthening its provisions will make the individual's needs ever more the focus of services. It provides a model that can be built upon. All too often, disabled people, and other community care service users, are reduced to a state of artificial dependency by their contact with statutory agencies.
432 The whole thrust of community care is surely to reverse that process, and ensure that elderly and disabled people or those with mental health problems have their needs addressed in such a way that they are able to participate to the fullest extent possible in the community. It is time that users were given more power to shape their services.
The Bill points the way towards a time when service users will shape the whole plethora of community care services, not only by purchasing for themselves but by defining new standards that will make community care services more user-focused and user-friendly.
The Bill is a good one—we do not argue with that—but it could and should be a lot better. Our proposals seek to strengthen it and give life to the philosophy that underpins it. We believe that disabled people deserve the best and we will do all in our power to ensure that when the Bill has completed its passage, it delivers the very best for this and future generations of disabled people.
§ Mr. Bowis
With the leave of the House, Mr. Deputy Speaker. As hon. Members on both sides of the House have said, this has been a good debate. The hon. Member for Darlington (Mr. Milburn) referred to it as "consensual". I presume that that means that it was a debate between consenting adults, which is probably right. There has been a great deal of agreement about the quality and worth of the measure.
There have been well-deserved tributes to my right hon. Friend the Member for Chelsea (Sir N. Scott) as the father of the independent living fund, so "Our Father, who art behind me" is the spirit of the measure, which is in that tradition. The ILF had tighter eligibility criteria than those in the Bill, and was more limited in the scope of the services involved. However, it was the Bill's forerunner, and I pay tribute to my right hon. Friend's work with disabled people, and especially on the ILF.
I gladly accept the universal welcome for the Bill. The debate centred on three things: the regulations, the guidance and the practical support that can be given as the Bill is implemented. In answer to an earlier question, I should say that we are talking about negative resolution procedures at subsequent stages.
The regulations have focused on several issues. The eligibility criteria have been central. The Bill was a response to younger physically disabled people who said that it would greatly enhance their working lives. That is where we started from, and why we have come from that direction. I remember talking to the hon. Member for Stratford-on-Avon (Mr. Howarth) when we were considering what to do. He urged us to be cautious and careful, and do it in steps, and we have sought to do that.
Some local authorities have urged us to do it in stages, although there has been great enthusiasm for the all-in-one-go approach in the House tonight. That is why we heard the Kemptown warning, if I may call it that, from my hon. Friend the Member for Brighton, Kemptown (Sir A. Bowden): whatever the House agrees to, there will be pressure on local authorities to bring it in as quickly as possible for people who are eligible. It is a question of which stages at what time; where we go and how soon.
When I opened the debate, I said that I was listening, and that I wanted to hear from hon. Members, as we have heard from people responding to our consultation paper.
433 Today, hon. Members have put forward their views about the learning disability extension. We made it clear that we would listen to their views very carefully, as we did in another place. Hon. Members referred to physically disabled people over the age of 65—and not just those who turned 65 having qualified previously. I hear their messages, and we will take them into account, together with all other views.
Hon. Members raised questions about the charging system. I emphasise that the discretionary charging system is exactly the same as that for community care services. There should be no difference between the two systems, and I hope that I have reassured hon. Members in that regard.
§ Mr. Alan Howarth
Does the Minister accept that we are not really comparing like with like? While we want to see a level playing field in that respect, there is a difference between enabling the users of direct payments to be good employers and to meet that range of costs, and charging them for the services that are provided directly by social services. They are not the same things, and the Minister will not achieve his objective easily.
§ Mr. Bowis
I understand the hon. Gentleman's point, and I shall return to it at a later stage. It would be quite wrong for someone to be charged for services provided under the discretionary charging system if someone who received the same services through the direct payment scheme were free of those charges. We want to ensure that there is a level playing field.
Reference was made to respite and the four-week period that is mentioned in the consultation paper. We are seeking views about that period, but, whatever figure is chosen, there is nothing to stop local authorities continuing to provide respite care.
Hon. Members have discussed the issue of relatives and lodgers, and there is general agreement that close relatives should be excluded under the legislation. However, there is a question as to where discretion should fall beyond them. I am conscious that we should not seek to pay relatives for emergency provision, as that is something that most relatives would be pleased to provide.
We have discussed guidance and practical support for local authorities and payees, including how to assess payments, how to guide people on legal requirements, guidance to users, and how to employ people. Those issues will be encompassed in guidelines. As to the request for the Disablement Income Group and the British Council of Organisations of Disabled People to be involved in that process, I confirm that Pauline Thompson and Jane Campbell served on the technical advisory group, and I assure hon. Members that they will continue to provide advice.
I repeat that existing schemes are not affected by the measure. If authorities decide to proceed with a scheme, that is entirely their decision. Consultation is central to 434 the process. We released the consultation paper as soon as possible after publishing the Bill, so that people would be aware of the sorts of issues that will be debated when the regulations come before Parliament. I think that has helped to focus the debate, and no doubt it will help to focus consideration of the Bill in its later stages.
I have been asked to put the responses in the Library, and I am happy to confirm that I shall do so. I hope that that will prove helpful. The measure extends choice, dignity and independence to disabled people.
§ Mr. Tom Clarke
We are very grateful to the Minister for making that commitment. Can he tell us when those responses will be available?
§ Mr. Bowis
I have not yet seen them myself. I shall need a short time in which to receive the responses and have them analysed, and then we shall place them in the Library.
Today we have had the beatification of Chelsea and, the absolution of Mid-Kent, and I now look forward to the Committee stage of the Bill and whatever it may bring.
§ Question put and agreed to.
§ Bill accordingly read a Second time, and committed to a Standing Committee, pursuant to Standing Order No. 61 (Committal of Bills).