§ 8.6 p.m.
§ Lord McColl of Dulwich
My Lords, I beg to move that this Bill be now read a second time.
For years a number of severely disabled people have received direct payments from local authorities to allow them to buy and organise their own personal assistance services which enable them to preserve their dignity and independence and to live as normal a life as possible. When Westminster discovered this splendid arrangement during the Committee stage of 1641 the National Health Service and Community Care Act 1990, the congenital snag-hunters soon went to work and the direct payments were declared illegal. It is high time that matter was put right, and this Bill will do exactly that.
I wish to illustrate the problem by asking each of your Lordships to imagine yourselves as a person who is so severely disabled that you are unable to get up in the morning without someone entering your home to help you. You are unable to get out of bed, to attend to your toilet requirements or to dress yourself and do everything else that is necessary to get yourself ready for a day's work. There are two ways of coping with this state of affairs. The first way is to have the local authority provide you with a personal assistance service. You are not sure which assistant will arrive or the time she will arrive. The assistant may have been delayed with another client and she could not arrive early enough to get you to work on time because local authority employment provisions prevent her from coming at the hours that you would prefer. Nevertheless you just have to put up with that.
The personal assistant who arrives may be the one you do not particularly like and she does not appear to like you. Nevertheless she has to take you to the loo, wash you, dress you, get you up and carry out all those intimate and personal tasks you would prefer to be able to do yourself. However, because of your physical disability you are unable to do so. There are other small tasks you would like to have carried out but that is not possible because they are outside the given remit. You are just one of many and even though you tell the assistant what you want to have done, the assistant is an employee of the local authority and is ultimately responsible to that authority and not to you. There is no doubt that you are not in control.
The other way of dealing with this problem is to receive direct payments from the local authority to enable you to arrange your own care and to choose your personal assistant yourself. In fact, you could have two so that if one is unexpectedly ill and cannot come you have another to call on. You know and like the person who is coming to get you up. If you want another small task done you can just ask and it will be done. If you need to get up particularly early one morning that can be arranged. Most important of all, you know that if things do not work out, you can employ somebody else.
There is no question of negotiation with the local authority. There is one relationship, which is between you and your personal assistant. There are none of those complicated tripartite arrangements which are cumbersome and ultimately unsatisfactory. You are in complete control and you have the privacy, security and confidence of knowing that everything will be done in the way that you require.
I have no doubt that your Lordships, and my noble friend the Minister, would prefer to receive direct payments, which, surprisingly, are cheaper and certainly less bureaucratic. They provide the 1642 independence which is essential for your Lordships to live as normal a life as possible. That is the essence of that Bill.
This is not a new issue to your Lordships' House. It has been raised on many occasions. Whenever it has been discussed there has been overwhelming support for the proposed measure from all sides of the House. It is eminently in line with the Government's stated community care policy. It is at the heart of empowerment, choice and independence. It gives disabled people real control over their lives. It has also been shown to be cost effective and efficient. Rather than costing the local authority more money, it will produce significant savings.
This is a policy which has been called for by disabled people up and down the land, by local authority associations, by users and professional experts in community care, by the Audit Commission, the Prince of Wales' Advisory Group on Disability, the British Association of Social Workers and the Association of Directors of Social Services.
Such direct payments have been made for a number of years. The proof that they work is out there for all of us to see. A survey by the Royal Association for Disability and Rehabilitation in 1990 revealed that 23 per cent. of local authorities were making direct payments.
It also has considerable support from Government Ministers. Indeed, every time we hear a health Minister speak on the issue we seem to get nearer to agreeing that this is the way forward. The most recent words were from the Minister for Disabled People, Nicholas Scott, during the Committee stage of the Disability (Grants) Bill. He said:No one who has stayed in close touch with the work of the Independent Living Fund can be unaware of the importance of cash, as opposed to services, to empower disabled people to have control over their lives".—[Official Report, Commons, Standing Committee A, 25/3/93; col. 52.]Speaking during the Second Reading debate on the same Bill Alistair Burt said:The Government have given careful consideration to local authority payments and we have decided that at this stage it would not be wise to introduce such provision. However, I see no reason for that to be an irreversible decision".—[Official Report, Commons, 15/3/93; Col. 115.]So what exactly does the Bill propose? It empowers local authorities to make direct cash payments in place of services. It has no cost implications. Indeed, as I have mentioned, it saves money. A person is assessed as needing a given level of personal assistance and instead of providing the services a cash payment is given. The Bill amends the National Assistance Act 1948, which is interpreted by the Department of Health as currently preventing local authorities from making cash payments.
In the Committee stage of the National Health Service and Community Care Act in another place, Virginia Bottomley said:Frankly, there is a lack of clarity in the way in which some authorities have been experimenting in what is an innovative but … valuable approach … I shall reconsider the proposal because the issue is complex. The basic commitment is there, and we may table a clearer and more specific amendment when the Bill is in another place". —[Official Report, Commons, Standing Committee E, 22/2/90; col. 1230.]1643 However, the amendment never materialised. Previously supportive Ministers said that they had been unable to come up with an amendment.
The final bombshell came when the Department of Health advised local authorities in its guidance that direct payments were illegal. That firm advice is now having repercussions in the community as some local authorities are having to change their direct payment schemes into schemes where payments are made through a third party. That adds unnecessary bureaucracy and administrative costs rise. It is an intrusion into an individual's private life.
Perhaps I could give the case of Mr. A. as an example of the sort of tripartite arrangement the Government envisage in their policy guidance to local authorities. Mr. A. employs the staff and manages them on a day-to-day basis, but the staff are paid by the local authority and are therefore subject to the guidelines and employment practices laid down by that local authority. That restricts the hours they work and the length of shifts. It means that they are ultimately responsible to the local authority and not to Mr. A. It leaves Mr. A in the position where the authority says that he has control but in practice he does not have the flexibility and real control of the direct payments arrangements. He cannot even decide when he goes to bed. The fact that it does not work is hardly surprising.
The Bill would change that and allow the schemes to continue and flourish. The Bill restricts the scheme to people who are in receipt of attendance allowance or the care component of the disability living allowance. They are by definition severely disabled. That was done for two reasons. First, the ability to control one's own cash and therefore one's personal assistance is more critical to someone who is heavily dependent. Local authority services, however excellent, are not geared to providing the high degree of service provision necessary, even though the number of people requiring it is small.
Secondly, it has been done in response to concerns that such provision would open the floodgates, which has always been the way to sink a new idea. The Bill is phrased in such a way that there is no compulsion on the part of an individual to receive direct payments. That is to prevent the scenario arising where local authorities no longer provide services of any kind but simply administer cash, a situation which no one could support.
The administrative procedures are simple. A person requiring services is assessed under the National Health Service and Community Care Act. It will become apparent whether the person wishes to receive direct payments and is capable of doing so. If he is willing to take on the intricacies of employing his own staff that option is open to him.
The proposal is merely an empowering one. The local authority does not need to make a payment to anyone it considers unsuitable. However, research has shown that with support from friends, relations and sometimes social services departments, the success of coping with direct payments brings a considerable sense of achievement and self esteem, often to the whole family. Ann Kestenbaum's Report Cash for 1644 Care discusses that aspect. It contains the following typical comment from a disabled person in receipt of direct payments:It makes us feel in control of our lives. Gives us back the feeling of being people and not a pathetic handicapped family".That comment was made by a lady with rheumatoid arthritis.
The Bill is modest in its proposals, yet the policy of direct payments has been described as the litmus test of the Government's commitment to independent living. The Bill is eminently conservative in its approach and has the widespread support of all shades of political opinion.
What about its cost-effectiveness? When the costs of the proposal were first considered fears were expressed that they would grow like Topsy, as has happened with the Independent Living Fund. I hope that I have made it clear that the only cost implications are savings. What is proposed is nothing like the Independent Living Fund, which required new money. This is simply a different way of delivering a given level of agreed service provision. A number of excellent publications have shown just how cost-effective direct payments are. The overwhelming evidence is that often a cash payment to someone living in his own home would be much cheaper than a place in a residential care home.
Let us take Mrs. D., for example. She is young and married. She works as a training director and pays taxes. She receives a cash payment from her local authority, makes her own personal assistance arrangements and employs whom she likes and the hours that they work. A place in a residential home would be considerably more costly and it would not give her the flexibility that she needs in order to work, let alone to allow her a proper family life, choosing her friends, when she sees them and allowing her to live a fulfilled and dignified life in the community.
There are a number of reasons why the scheme is cost effective. First, it gives the best value service as it provides exactly what the disabled person needs and not the local authority's view of what the disabled person needs. In a particularly helpful contribution during the Second Reading of the Disability (Grants) Bill, on 15th March 1993, Mr. Alan Howarth, stated:Notwithstanding the personal commitment of local authority staff, bureaucracies are always liable to fit the client to the service, rather than the other way round".He continued by quoting the disabled woman, Elizabeth, who said,Yes, sometimes they're very patronising. They're overbearing and they want to do more than I actually need". [Official Report, Commons, 15/3/93; col. 63.]Secondly, the scheme boosts morale. That was revealed in Ann Kestenbaum's report. I quote one of the disabled people involved who stated:If you have a carer you feel safe with, you know your quality of life is better. It opens things up. Your personality changes. You laugh".Direct payments are a great boost to morale, and having a high morale directly enhances the body's defences against illnesses of all kinds. As a result people have fewer illnesses and thereby save the National Health Service money.
1645 Thirdly, direct payments reduce costs by circumventing considerable administrative and bureaucratic procedures. One of the direct consequences of the Government's advice on direct payments has been to force some local authorities to make payments through a third party. That creates even more unnecessary bureaucracy. As the country is already knee deep in the thick treacle of bureaucracy we really need less and not more.
One social worker charged with changing a direct payment scheme to an indirect payment arrangement said, "They are paying me to push bits of paper around and set up meetings to sort things out when my time would be far better spent on much needed direct case work. It will probably cost a further £700 a year for the scheme in our authority".
Fourthly, there is also the cost benefit of having one person who is flexible enough to do any of the many tasks that need to be carried out. A fifth reason why direct payments are so cost effective is that the degree of empowerment and flexibility often makes the difference between the person being able to work or not. Many of your Lordships have been sent details of individuals receiving direct payments, and for the majority of them it has meant that they have been able to work and to contribute to society. They also pay taxes which is a very obvious, tangible cost benefit.
An evaluation of the Greenwich Personal Assistance Scheme by Mike Oliver and Gerry Zarb suggests that Greenwich Council could have purchased just under 66,000 hours of home help with its £5 million - plus budget. However, for the same amount the personal assistance schemes could have purchased nearly twice that amount: just over one million hours of home help. Similar comparisons can be made for the employment of care attendants.
I wish to quote from the foreword to the evaluation by Mr. Nicholas Scott, Minister for Disabled People. He states:This report on Personal Assistance Schemes in Greenwich shows that as well as being cost effective, such schemes offer disabled people a greater degree of independence when compared with traditional forms of provision".There is not a single organisation or individual who has experience of direct payment schemes who does not believe that they must be the way forward in the development of independent living for disabled people. The case is overwhelming and the time will come when the necessary empowerment will be put in place. I should rather like it to be this Government which make that empowerment sooner rather than later. That would give a clear message to disabled people that when the Government talk about empowerment, they mean choice, independence and freedom from the shackles of bureaucracy. I beg to move.
Moved, That the Bill be now read a second time.—(Lord McColl of Dulwich.)
§ 8.24 p.m.
§ Lord Murray of Epping Forest
My Lords, not only noble Lords but disabled people generally will be grateful to the noble Lord, Lord McColl, for his 1646 initiative in bringing the proposal before your Lordships' House. I hope that before the debate is finished, those who like me warmly support the proposal will have persuaded the Government that they too should be grateful to the noble Lord for the initiative.
He has established beyond question the desirability of the proposal in terms of benefits to disabled people; the enlargement of their choice and their control; the enhancement of their dignity; and the benefits to carers—both professional and family carers. Experience under the Independent Living Fund has shown how direct payments enormously improve the relationship between disabled persons and their carers. There are benefits too to the Government, and to the taxpayer, if you like. As the noble Lord pointed out, more disabled people in that situation are able to earn and to pay taxes.
Research and experience have shown that local expenditure in this way is more cost effective. The Kingston research and research by the ADSS has demonstrated that. Therefore I should have thought that the desirability of the proposal would be common ground between the Government Front Bench and the remainder of the House. Indeed, as the noble Lord reminded us, Ministers have recognised that common ground. The noble Lord also stated that the proposal was very much in line with Government and Conservative thinking. I hope that my noble friends will not think less of the proposal for that, in particular in the light of the wide range of supporting opinion of disabled persons' organizations—the ADSS, district councils, the Audit Commission, and so on—to which the noble Lord drew our attention.
With regard to desirability there is no further case to argue beyond that which the noble Lord has argued already. If there were an issue, it turns on the question of practicability. When one considers the range of organisations which support the Bill, one wonders who is opposed to it. Who is opposed to this universally acclaimed proposal? Frankly, the only body that I have been able to find is the Treasury on the grounds of practicability. So far as I can understand, the Treasury has used three arguments to which the noble Lord adverted. I wish to concentrate on those.
First, the Treasury argues that there is a distinction between social service provision for local authorities on the one hand and social security payments for the DSS on the other. But what is the basis of that distinction? At the most, it is a historical convention stemming from the 1948 Act and time moves on. It is a convention which is,More honoured in the breach than in the observance".I hope that I use that quotation in the true sense in which Hamlet used it. The convention has been breached in principle by the availability of local authority payments under the Children Act 1989 to children and families. It has been breached in Scotland by payments by local authorities under the Social Work (Scotland) Act 1968, to say nothing of the local authority payments, before the Treasury discovered 1647 them and ruled that they were illegal. As the noble Lord, Lord McColl, documented so well, we know the excellent results of those activities by local authorities.
If that distinction on which we are told the Treasury makes its judgment ever were valid, the wall of principle has long crumbled and it is time that it should now be demolished.
The second argument which apparently the Treasury uses is that it is difficult to decide who should be given the cash payments and who should receive services and that it is difficult to control and administer them. As the noble Lord told us, the basic assessment by local authorities will establish what the needs of the individual are. Thereafter, we suggest that it should be open to the disabled person to opt for cash rather than services in kind, unless he or she is manifestly incapable of doing so. Some people may not be able to do that; some may well not want to. But if they opt for payments, then thereafter they can be made fully accountable, as experience has shown under the Independent Living Fund and in schemes run so far by local authorities. If there is evidence that the person cannot cope or is abusing the scheme, the answer is simple: the payments will be stopped.
However, what I find worrying is that underneath that general attitude and argument appears to be the belief that disabled people cannot cope. Insisting that disabled people must have their support services provided for them by local authorities or by other providing agencies, as opposed to giving them the cash equivalent to buy in the services for themselves, is as little defensible as a decision that people over the age of 70 should not receive their pensions in cash but should be issued instead with tickets for clothing, heating and groceries.
The Treasury's third objection, to which the noble Lord adverted, is that the cash payments would escalate. It reminds us of what happened in the case of the Independent Living Fund. Cash payments escalated, as needs were discovered which no one had previously guessed at. However, as the noble Lord said, this situation is completely different. The cost will be based on assessments; and whether the money is spent in providing services or is paid in cash form, it will be nearly the same with two possible qualifications. First, to the extent that payments enable disabled people to work—and it is shown that in some cases it enables them for the first time to work—then they will pay taxes. Secondly, to the extent that the system is more effective than direct provision at keeping people out of institutional care—and experience shows that is so—then it must reduce the cost to the local authority or the cost to the state.
Therefore the proposal on balance can only save money. It cannot cost more than direct provision. Thus, the taxpayer —nationally, locally or both—would receive a benefit from the Bill. However, I conclude on the point that the fact that the taxpayer would benefit should not be the reason for adopting the proposal. That would be doing the right thing for the wrong reason. We should adopt it because it would enable disabled people to control their own lives. That is right for them, as it is right for all of us.
§ 8.35 p.m.
Baroness Darcy (de Knayth)
My Lords, I wish to give a very warm welcome and wholehearted support to this small Bill to which the noble Lord, Lord McColl, has given such a clear, convincing and comprehensive introduction. It is a small Bill but it will make an enormous difference to the lives of some severely disabled people. It is an issue in which I have been involved for some time, but I shall not repeat what the noble Lord, Lord McColl, said about how we started with high hopes, with Ministers being helpful and hoping that they would be able to change the law with an amendment, to the time when the department issued its guidance. It said that those people who were already receiving direct cash payments were in an illegal situation.
We have taken several steps backwards and it is essential that we now move forward. The noble Lord's Bill gives us an opportunity to sort out the unsatisfactory and muddled situation by empowering, not obliging, local authorities to make direct payments to those very severely disabled people who choose to take over the management of that aspect of their lives. As the noble Lord, Lord Murray, said, it is not everyone who will wish to do that.
There is no doubt whatever about the value of direct payments and the noble Lord, Lord McColl, has already quoted several Ministers in favour of them. I wish to add two quotes. In the debate on the Independent Living Fund on 7th March 1991, the noble Lord, Lord Henley, said:the fund … has been a success not least because it has addressed a real need in the community in giving disabled people the opportunity to exercise control over their lives rather than having to submit to choices made on their behalf by experts. It allows individuals largely to choose the nature and extent of the care that they need in order to remain in their homes".—[Official Report, 7/3/91; col. 1504.]Again, the Minister for Disabled People, when announcing the changes in the Independent Living Fund in November 1992, said:The new fund … ensures the continuation of one of the most significant features of the ILF—an element of cash payments to individual disabled people to enable them to control provision of … their care".However, unless local authorities are empowered to make direct payments, this "element of cash" will have little significance for most disabled people because of the proposed arrangements for the ILF, now to be the Independent Living (1993) Fund. The new arrangements have, I believe, broadened the need for direct payments and added weight to the arguments. I think that it is a new element. Before starting on the new element, I wish totally to support what the noble Lord, Lord Murray, said, in all his arguments that rebutted the Treasury's objections.
Under the proposed arrangements for the ILF, new claimants will look to the local authorities for the first £200 worth of provision which will be in services. Above that, they may apply for up to £300 from the ILF, making £500 in all. The Government's figures show that about 1,500 people will qualify, as opposed to about 6,500 now who receive direct cash payments from the ILF.
For most of those people the ILF money, cash, will only be a small part of their total care package. The 1649 Spinal Injuries Association reckons that its average care package is worth £300 in all, so it would mean that under the new arrangements £200 worth would be in local authority care and only £100 in cash. That is one-third of the package. I think we can take it that SIA members are among the most severely disabled people, so that most eligible recipients will receive a good deal less; a smaller percentage of cash in the package. It will therefore be impossible to control and design arrangements of care with just one-third cash element and the rest in services.
The Association of Directors of Social Services, the AMA and the ACC have said that it will lead to muddled personal assistance provision. They have called on the Government to empower local authorities to make direct cash payments. The noble Lord, Lord McColl, has already given examples and quotes of the difference that direct cash payments have made to people's lives. I am sure that others will give more so I shall say no more on that, except that people do seem to be healthier and happier. What the noble Lord, Lord McColl, said is very interesting. It is stressful to have a lot of different people coming in and out of your home and doing things to you. The noble Lord spoke of the highly personal nature of this care. I do not think that we should mince around with euphemisms. In the case of tetraplegics we are talking about catheterisation and manual evacuation of the bowel. I think that you should be allowed to choose who invades your body.
Surely this is the answer to the worry about whether recipients will misuse the cash and spend it all on gin, or lie in bed all day. If they did, they would very soon be very ill. They would get pressure sores and urinary tract infections. They would suffer renal failure and would have a very nasty death. So most of all, it is about freedom to do the things that most people take totally for granted: to get up or go to bed when one wants to, to go on holiday or to a conference, or whatever.
When the Member of another place, Andrew Rowe, who has doggedly pursued this issue from the first, went a year or two ago to argue the case with Mrs. Bottomley, he very kindly took me, together with some advisers and a number of very severely disabled people. The only reason why one of the tetraplegics was able to be flexible and rearrange his life to travel down from the North, to stay overnight and to explain the situation to Mrs. Bottomley, was precisely because he was receiving direct cash payments. Otherwise he could not have come here to argue the case. It is illegal.
So the case for direct payments is compelling in its own right. I believe that the new ILF arrangements that are going ahead make it all the more important that it is implemented alongside the new arrangements. Direct cash payments are acknowledged to be the cornerstone of independent living. I urge the Minister to respond positively to this small but crucial Bill and not only give it a Second Reading but wish it well and assist its passage.
§ 8.41 p.m.
§ Lord Swinfen
My Lords, this short but eminently sensible Bill has my full support. My noble friend Lord McColl is to be congratulated on introducing it to the House. I trust that my noble friend the Minister, and the Government in general, will assist its speedy passage through both Houses of Parliament. I can see no reason why not, as it is entirely consistent with the aims of the Government as set out in paragraph 1.8 of their White Paper Caring for People, as giving people a greater individual say in how they live their lives and on the services they need to help them do so.
The principle behind the Bill is already enshrined in law. The Government already make direct payments through the Independent Living Fund and by way of social security payments. Under the Social Services (Scotland) Act children are entitled to receive cash and to make their own arrangements. Also, under the Children Act, local authorities may make direct payments to children and young people. The precedent is already in place. This Bill provides enabling powers; it is not compulsory. The Government appear to trust children and able-bodied people who are in receipt of social security payments. Why do they not trust those who have the misfortune to suffer from a physical disability? I wonder whether, when she responds to the debate, the Minister will answer that direct question. I think it is important.
No additional funding is required under the proposals set out in the Bill. Indeed, as others have already said, it may well reduce costs by cutting out some of the inevitable overheads of local authorities. Giving individuals control over a sum of money will in most cases mean more cost-effectivness in its use.
A few local authorities already pass cash to voluntary organisations for the needs of particular disabled people, after having assessed those needs. The voluntary organisations have to make a small additional charge to cover their costs. The Bill will obviate that requirement and so save money.
I understand that the new Independent Living Fund, as already mentioned by the noble Baroness, Lady Darcy (de Knayth), is already arranged so that the first £200 a week of assistance to the disabled recipient must be in the form of services—services that the local authority are prepared to provide, not necessarily those that the client disabled person sees as most beneficial to his or her needs. However, the balance of benefit to the disabled client may be in the form of cash. That seems to me to be very muddled thinking.
An example of the wisdom behind the Bill is contained in a letter that I received recently. With the permission of the House, I shall quote from it:I have a friend who is totally paralysed and can only move her electric wheelchair with a suck-blow device and controls her environment by Possum equipment. Her husband died suddenly and her sons have now married. I was at a case conference with the Social Services and Nursing Services. The Nursing Officer said that it was costing £70 or more each evening when a nurse and an assistant had to come in to put Margaret to bed and deal with her toilet needs, although it took less than twenty minutes. This in addition to all the other elements of care that Margaret needs during the day.1651Margaret was granted funds from the ILF and now has two Scandinavian girls living in who not only deal with all her care needs but also take her out, prepare her meals and do some of the light housework. Her life style is vastly improved and she is much happier and more confident".I have done a few calculations. The letter quoted a cost of £70 each evening. After making inquiries, I elicited the information that each of the two girls who were employed by Margaret are paid £70 a week. That produces a saving of £350 a week, or £18,200 a year. Totalled with the many other people to whom the same or similar could apply, that will mean quite a large fund.
Arrangements made directly between the disabled person and the carers are far more flexible, as has already been said, and allow a much better quality of life to the disabled person. The Bill, once passed, will allow the disabled person to choose his or her own carers rather than have to accept those provided by the local authority.
Carers often have to perform extremely personal care for the disabled client. It can be most embarrassing for both people, particularly if the relationship is not good. The noble Baroness, Lady Darcy (de Knayth) has already mentioned that point. It will be much more difficult to arrange to change an unsuitable carer if all the carers are provided for a particular disabled person by the local authority. If the individual disabled person has a grant to spend and can choose his or her own carers, it will provide greater privacy and a more comfortable situation.
I should like to leave noble Lords with one last thought. Let us take a situation where a disabled person—we can call that person Hilary, Francis or Phil, all names that may refer either to men or women, and there are many other similar names—needs to be bathed and toileted, and the regular cover is suddenly taken ill. It is late on a Friday evening and a replacement has to be found quickly. The social services department is about to close down for the weekend, and the local authority clerk on duty does not necessarily know whether that replacement should be male or female. If the disabled person is given a grant and makes his or her own arrangements, that difficulty would not arise. I support the Bill.
§ 8.50 p.m.
§ Lord Ashley of Stoke
My Lords, I should like to offer my very warm congratulations to the noble Lord, Lord McColl, not only on bringing forward this important subject but also on his excellent and comprehensive presentation of the case. I am almost sorry that he did it so well because he has left us with nothing to say except to put in the odd comma, the random dash and possibly the occasional PS. It was a splendid speech. He has the reputation for being a fine doctor. I can only conclude that he may be wasting his time in medicine. Being able to deploy a case as he did, he should be a full-time politician. We are all grateful to him for the case he presented.
I should also like to congratulate Fidelity Simpson who is the adviser to the Spinal Injuries Association. She has provided many noble Lords with splendid briefs. After reading her briefings, there is no excuse 1652 for anyone not to speak like Demosthenes or Pericles. We should all speak at such an elevated standard that we should want to be here all night.
For me this is basically a simple issue. I shall listen with very great care to the noble Baroness who will wind up for the Government. As never before this is almost a yes and no case. The present position—the illegality of local authorities making cash payments—is an unjust anachronism. There is absolutely no justification whatever for it. It simply has to be removed because it denies to disabled people the cash that they need to control their own lives. It is as simple as that. It is a black and white issue. In my 26 years in the other place I have come across very few issues that have been so black and white and this is one of them. To deny this change is to deny to the most vulnerable in our society the freedom and independence which is most crucial.
We all know that there are some very good local authorities. We also know that there are some appalling local authorities. But whatever the local authority, its provision is bound to be patchy. Even where it is good, the provision will not be what disabled people want because their preference is for cash. Those who apply want to have cash for the services. That has been amply demonstrated.
I was very struck by the speech of the noble Baroness, Lady Darcy (de Knayth). Those with personal experience of having to ask for things, being concerned about people coming into their homes and dealing with their bodies and coming in at different hours—they are the people who know. People who are severely disabled should not have to beg and plead and negotiate. They should be able to say what they want. They can only say what they want when they pay for it. That makes them masters of the situation and gives them the freedom that we all have. That is why, in my view, this change is absolutely unchallengable.
The noble Baroness who is to reply on behalf of the Government will no doubt have spoken to Mr. Andrew Rowe who has been active in another place. Mr. Andrew Rowe deserves great credit for having introduced a similar measure in another place. He is no extremist. He is known as a moderate Member of Parliament and a very loyal supporter of the Government. Yet he has criticised the Government as "stubborn" for their refusal to support change and has warned of a "bureaucratic nightmare". Those are strong words from a loyal government supporter. I hope that the noble Baroness will take them on board. I also hope that Conservative Members of this House, including Ministers, will endorse Mr. Andrew Rowe's views and press the Government to support the Bill.
I had a very impressive list of arguments against the objections put forward by the Treasury. However, they have already been raised by various noble Lords and there is no point in my repeating them. With regard to accountability, it is quite nonsensical to argue that, if disabled people are given the cash, it is difficult to make them accountable. That is absolute nonsense. There was no problem with the 22,000 payments made from the ILF up to March this year. The simplest and most reliable system of all can be 1653 used; namely, payments made into separate bank accounts with full access by the local authority to all the bills. There is no question there about accountability. It is total accountability.
The distinction between the social services providing services and social security providing cash has already been dealt with very adequately indeed, especially with regard to the precedents of the Children Act and the Social Work (Scotland) Act. It is absurd to equate with the ILF the increase from £1 million with which it began to £100 million in 1993. No comparison at all can be made with what this system will be when the Bill is enacted—enacted it will be sooner or later, as the noble Lord, Lord McColl, said—because we ask for cash instead of services. That is all. We do not ask for more cash and we do not ask for new money.
I conclude on this point. If the Minister who is shortly to reply, after hearing some more brilliant speeches no doubt, has any doubt about the value of the Bill, I suggest that she heeds the words of disabled people themselves. The people who have been supporting this Bill are powerful organisations such as the Association of Municipal Authorities, the Association of County Councils, the Association of Directors of Social Services and the BMA. But the most important people of all are disabled people—those who are suffering and have practical experience. The noble Baroness, Lady Darcy (de Knayth), spoke tonight with very great authority. I know that the noble Baroness, Lady Masham, will also speak with similar authority. What really counts is what disabled people want—not what Ministers or the Treasury want.
I commend to the Minister the words of a lady called Jane Campbell, who is herself very seriously disabled. She attended a meeting with the noble Lord, Lord McColl, and others who support the Bill. I hope that she is not blushing now. Her words are far more eloquent than any that I can use. She said:Employing your own personal care assistants places negotiation on a different plane. You are not asking for favours or desperately attempting to change the (statutory) home carers rota so as to enjoy another hour at that party. Instead you are setting your schedule for the day which you know will be adhered to by your employee, with whom you have agreed a one to one contract of employment".That was the nub of the problem. But then Jane goes on to say:Whereas my traditional form of help gave me no privacy and was often loaded with what people thought was 'best for me', I now decide my routines and I feel I have an equal say in how my home and my family life is run. This is, I believe, fundamental to one's dignity and sense of belonging and contributing".No one could put it better than that. There are many more wonderful sentences in that letter but I have spoken long enough. I want to commend to the Minister this splendid change, admirably proposed by the noble Lord, Lord McColl.
My final message to the Minister is this. Quite a number of us think a great deal of her personally and in her capacity as a Minister. I know that she cannot create policy. She is to some extent governed by the Treasury. But the job of a Minister is to argue with the Treasury and win. I hope that the message she takes 1654 back tonight is that every speaker in the debate is pressing very strongly—and presumably those who follow will take the same line—in support of the Bill. That is a very powerful message for the Minister to take to the Secretary of State and to the Treasury.
§ 9 p.m.
§ Baroness Masham of Ilton
My Lords, I should like to thank the noble Lord, Lord McColl of Dulwich. I am not at all surprised by his clarity of presentation. He is a professor of surgery. I hope very much that he will be able to make a clear incision in the Treasury's thinking over this Bill.
So many changes have occurred in recent months, with the merging of certain benefits, the changing of the names of benefits and the complicated, long forms which disabled people or their representatives have had to fill in, that many people are now confused. This Bill, as far as I can make out, would cut out some administration and therefore be cost-effective. The people affected by the Bill will be severely disabled and will all have been assessed by their local authorities and therefore will be well known. They will only be the people who want to be responsible and are able to control their own lives.
I should like to give a few examples of the problems that severely disabled people have to endure. A person paralysed from the neck down, without use in his or her arms, will not be able to do their own bowel evacuation, as was said by my noble friend Lady Darcy (de Knayth). The bowel has a very delicate lining and rough handling can damage it. There could also be a problem of infection. The tetraplegic—the person paralysed from the neck down—has to have confidence in the person who performs the evacuation. They need to be compatible. These helpers are people coming in to the disabled person's private home. They must also be honest. Unless there is mutual acceptance of each other, you can imagine the breakdown of trust and understanding. This is a very personal matter, as has been said by several noble Lords.
The Independent on 1st April had an article about a woman who had been left paralysed when a drunken driver crashed into her car 19 years ago. Mrs. Dibdin had to stop teaching physics, stay at home and learn the humiliating realities of local authority care. She said:The home help came to me one day when my bed was wet and I asked her to change the sheets. She refused. She said, 'Today is not the day we change the bed linen'. I asked if she expected me to go to sleep in a wet bed. She said, 'Well, I'm not changing it'".So often disabled people have to wait for strangers to bathe them, shave them, feed them and do all kinds of intimate tasks. If disabled people can hire their own help they can then organise the times to suit their own timetable and maybe that of a husband and children. As has been said so many times, a severely disabled person can mean a severely disabled family.
Even if organisations of, or for, disabled people administer the benefits for disabled people on behalf of local authorities, some of the money will be lost on administration. The fewer people involved, the better it is for the taxpayer whose money it is. The Government have approved care in the community. I 1655 agree that there should always be monitoring to see that money goes where it should go and is not wasted. I shall listen carefully to what the Minister says because I am a taxpayer. But I also know what indignities some disabled people have to put up with.
The Minister, the noble Baroness, Lady Cumberlege, is the Minister for AIDS. Some people who will benefit from the Bill will be suffering from AIDS and in the last stages of the illnesses. The Bill, giving direct payments to clients, would help solve the difficult problem of confidentiality.
I hope that the Minister, who is more understanding of these problems than many people in government, will consider what has been said tonight and will have discussions with her ministerial colleagues, especially those from the Treasury.
§ 9.6 p.m.
§ Baroness O'Cathain
My Lords, like every other speaker I wholeheartedly welcome the Bill. I support everything that has been said by every noble Lord so far for many reasons, three of them specific. First, I believe that the Bill will enable disabled people to take greater control of their lives, thereby retaining human dignity. Secondly, the Bill will help remove the heightened level of anxiety which occurs when routine changes. Thirdly, the Bill will permit the establishment of ongoing relationships between carer and patient, which are so essential. I shall deal with each of those matters in turn, make two specific points on the Bill and, finally, make an observation on the future provisions for helping a probably increasing number of disabled people in the population.
My knowledge of the subject is nothing like as wide as that of some of the other speakers in the debate. It is, however, based on first-hand personal experience of being responsible for ensuring that the greatest possible amount of dignity, self-respect and confidence is maintained by a stroke victim who, although categorised as disabled, is still a whole, live, intelligent human being with deep emotional feelings and immensely strong awareness, yet unable to communicate other than by facial expression or gestures with the left hand. Disabled yes, but his needs and wants are quite different from those of many other disabled people.
As the noble Lord, Lord McColl, reminded us, Alan Howarth, in another place said:We should see support for independent living as, above all, a moral imperative. In a great many cases disability is less a function of physical impairment than a failure by us —family, friends, professionals, society and politicians acting on its behalf—to do as much as we can to enable the physically impaired person to take control of his or her life and to take his or her full place in society".—[Official Report, Commons, 15/3/93; col. 62.]The Bill deals with "certain severely disabled persons". Sadly, "disabled" is a catch-all term. It is a collective noun of enormously diverse constituent parts. There is a danger of seeking a lowest common denominator solution to an immensely complex problem. The needs and wants of the individual disabled person are as varied as the needs and wants of the individual, able-bodied person. I am sure that practically each Member of your Lordships' House has needs and wants that are quite different from those 1656 of anybody else's needs and wants. I believe that this Bill provides for meeting the individual needs and wants of the disabled much better than is proposed under the withdrawal of the current situation.
I return to the human dignity aspect. If we can imagine it, let us put ourselves in the body of a person with MS. He suffers the indignity of all questions being addressed through a third person rather like the BBC Radio 4 programme, "Does He Take Sugar?" Under this Bill such a person could employ a person to help and care for him and establish at the outset that MS does not actually mean that he cannot take his own decisions.
Why do people raise their voices when speaking to a stroke victim? Just because a person cannot speak does not mean that his or her hearing is impaired. Under this Bill a stroke victim could employ a person for help and care and establish once and for all that deafness is not a problem rather than having to do it constantly when changing carers or helpers.
Why do we assume that the local authority support services know best when a patient should have his daily bath? As an aside, not all physically disabled people wish to be addressed on first name terms by somebody half their age. Informality is fine but sometimes patients should decide whether or not they are to be addressed in such a manner. It may not seem a major point. Again, it is the human dignity point and one that could be accommodated much more satisfactorily under this Bill.
A stroke victim who has exceptional organisational skills before the stroke does not necessarily lose those skills. Why not allow them to continue to use those skills by organising their own care and health? This Bill would permit that.
The second of my three points was the removal of the anxiety. So often, when a tragedy such as a stroke occurs, there is a massively heightened fear that something else might happen. Time, and the passing of time, become an obsession. If the help or the care does not arrive at exactly the time expected, serious concern, leading almost to a physical deterioration, can occur. If the patient calls the shots, so to speak —in other words, employs the carer or helper directly —the terms and conditions of employment can be agreed and, if not adhered to, as has been pointed out, another helper or carer can be substituted. In my experience, continuity of care with a consistent pattern of timed functions leads to a better situation both for the patient and for the carer. Again, this Bill would provide for that.
The third point which I mentioned is the establishment of relationships. Again, in my experience it sometimes takes a very long time to establish an efficient caring regime, particularly if the patient is a severe dysphasic case. People with communications difficulties present particular problems but problems which, over a period of time, can be understood, albeit imperfectly at times. That type of relationship needs endless patience and certainly requires a continuity of carer; otherwise serious misunderstandings can and do occur. The patient needs to be assisted by someone who is psychologically prepared to invest time in the comprehension process. That can only be achieved by 1657 choice and agreement—not by the allocation of a carer to a patient. Again, under the Bill, this situation would be helped immensely.
I turn now to specific points raised by the Bill. We are told that there is concern that if moneys were paid direct to patients, there could be a temptation to take the money and not spend it on the provision of help or care. Surely, as the noble Lord, Lord Ashley, said, that concern could be overcome by the operation of separate bank accounts which would be open to inspection by the local authority. That point should be rigorously pursued. As a part-time banker, I cannot see any reason why it should not work.
However, I have a worry that subsection (3) (c) might prove to be a problem. It states:A person covered by this subsection must … have signified to the local authority concerned his consent in writing".Again, drawing on my personal experience, not every person who is disabled can write. Certain stroke victims who are completely competent to stay in their own homes, provided they have help, are unable to compose words and even unable to hold a pen. I am sure that the clause could be amended to permit those ultimately responsible for the patient (be that husband, wife, son, daughter or maybe the family solicitor) to signify the consent of the patient "in writing". It is a minor point, but I think that it is fairly important.
Exceedingly worthwhile points have been made this evening—points that all of us should take on board. I am sure that the Minister is doing just that. Our general level of knowledge of the needs and wants of the disabled is uneven at best and, indeed, worrying at worst. With the possibility of an increasing ageing population, we are likely to have an ever-increasing number of disabled people. These people have every right to as good a life as possible and we must be aware of our responsibilities in this area.
Our responsibility as a nation is not necessarily to provide more nursing homes; it is to ensure that as many people as possible can live in their own homes, surrounded by their well-loved possessions, and be given the dignity of ultimately being responsible for themselves for as long as possible.
I fear that our attitude towards this situation is often one of fire-fighting rather than fire prevention. Have we really thought through the financial implications of an ever-increasing number of disabled? How many cases are there of disabled people being put in nursing homes, financed by the Government and local authorities, when if even half the amount of what it costs to fund such a transfer were paid direct to the patients, they could stay in their own homes and buy their own care and help services?
There are also many people who put themselves in a difficult financial situation by providing live-in care for a disabled person because they want their loved one to stay at home for as long as possible. Other European Community countries have a more enlightened approach and permit such payments to be offset against tax. Perhaps that is something that we 1658 should consider in the longer term. As I said at the beginning, I welcome this Bill. I wholeheartedly support it. I hope that the Government will also.
§ 9.17 p.m.
§ Baroness Hollis of Heigham
My Lords, as has been said, the Bill has received so much support tonight from all sides of the House that it is hard to find a voice or argument against it.
We have also heard the voice of the clients—of the disabled themselves. As one young woman said who briefed us only a short while ago—I hope that she will allow me to quote her:Direct payments have turned my life around".At core, that meant that services were fitted to her needs rather than she being fitted to the needs of the service. It meant that she could hold down a full-time job as a training director travelling to workshops across the country. She said that she had discovered for the first time what is meant by "spontaneity"—the ability to stay on at a party or to go out on the spur of the moment without having to negotiate with the statutory providers whether it was convenient for her to do so. It meant that she could take on wider obligations and, for example, become involved with voluntary groups. Another disabled woman (middle-aged and with her own helpers) could, for the first time, care for her 80 year-old frail mother. Therefore there is a sense that disabled people can contribute back to the community as fully as in the past they have been dependent on it.
The new provisions mean also that, as the noble Lord, Lord McColl, said, disabled people can be confident that their intimate medical history and details of their life are known only to those whom they choose should know them—those employed—rather than the large, inevitably rather random succession of people coming from the local authority and offering different aspects of care but backstopping for holidays, sick problems and maternity leave.
As one young disabled man said, "Social services can send you anyone they like, whether you like them or not. I get worn out by it". A disabled person employing his own personal assistants means that he has control over their tasks and functions. It means that we can offer flexibility. They can do a wide range of tasks. They can interlock with informal and unpaid caring and not have the inevitable demarcation of tasks associated with statutory services: here a putter to bed; there a district nurse; and here a home help; and there meals on wheels.
Above all, the Bill would permit autonomy. "If someone else employs the help for you", said another disabled woman, "it is like turning your own home into a residential home". "But with direct payments", said a young woman called Maria, "it means that 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". Those are all things that we take for granted, and for which disabled people depend upon others to help with. Maria added that to her friends, it meant, "I am me, rather than someone who needs help".
1659 There is Catherine, who was quoted by the Rowntree Trust. She was told that she could have mobility help from social services in the 5 p.m. to 7 p.m. slot. It was not whether she wanted or needed it, that was what the department could provide. As another ILF client said, "If you are paying for it, you can get what you want".
I speak as someone who was, for a number of years, on a county council social services committee. It is inevitable that if one is employing staff to put people to bed, some people have to be put to bed at 8.30 p.m. Not everyone can be put to bed at 11 o'clock, even if that is their choice. That is the way one has to organise a statutory service efficiently. None of us would want that for ourselves; we should not want it for the disabled.
We can understand therefore that disabled people, especially those with spinal injuries, should want the power represented by the Bill; but, presumably, it is resisted by the local authorities. After all, it is their money. Do they not want the close control that services in kind permit? Are not local authorities so committed to bureaucracy that they are reluctant to see this diffusion and dispersal of power? On the contrary, once professional assessments have been made, and efficient accounting arrangements are put in place, local authorities much prefer to be able to offer direct payments where appropriate rather than services in kind.
As one director of social services is quoted as saying in the ILF's recent report, direct payment allows, "personal brokerage". Another county director of social services said that forbidding payments in cash was:a backward step away from self-care management".Why do local authorities support the proposal? It reduces bureaucracy and dependency. Social services directors are the first to be uncomfortable with requiring disabled people to wait in line for their getting up and their going to bed when there are better ways of doing it. Noble Lords made the point eloquently that there are also directors of social services who are rightly influenced by considerations of cost.
We were told by the director of Kingston social services, which like other local authorities had got around the problem by setting up a trust, that he estimates that in Kingston and Greenwich it would cost about £55,000 a year to support eight severely disabled people in the community, but it would cost 10 times that to support them in residential care.
Even if those disabled people were not in residential care, services in kind, handled by expensive professional social work staff, inevitably carry additional costs. I was talking to social worker friends at the weekend. A typical social worker, specialising in disabled clients, might have a caseload of 30 to 50 such clients. Her time, at £25 to £30 an hour, is spent supervising half a dozen accounts: the getting-to-bed accounts; the home help accounts; the laundry service accounts; the day care accounts; the taxi accounts, all of which a disabled person requiring 20 hours help a week might need. That, she calculated, would add £20 to £30 per week to a service bill of £100.
1660 The noble Lord, Lord McColl, forcefully made the point that all research shows that it is up to 50 per cent. cheaper to allow disabled people to administer their needs for themselves and to have the services that they want rather than the services that they are told they need. Can they cope? Usually, yes, they can. But if not, one can devise an imaginative new scheme such as that which Norwich has set up. It is the independent living project within a trust fund financed by Norfolk social services. It will help up to 40 severely disabled people to handle their own accounts, to employ their own staff and to become skilled in financial advocacy.
This comes with the support of the director of social services; it comes with the support of the BMA; it comes with the support of the British Association of Social Workers; it comes with the support of the Audit Commission; and it comes with the support of the local authority associations. As was said tonight by the noble Baroness, Lady Darcy (de Knayth), the sad demise of the old independent living fund, and the still questionable arrangements for its successor funds, makes local authority direct cash payments even more desirable so that ILF and local authority resources can be most effectively integrated.
So where does the opposition come from? Clearly, the disabled want the legislation as do the professional and local authority organisations. Does the opposition come from the Government? As was said by the noble Lord, Lord McColl, Mrs. Bottomley has made it clear in debates on the National Health Service and Community Care Act 1990 that this was an innovative but in the right circumstances a valuable approach. She indicated that the basic commitment is there. But so far it is not.
So where is the hostility to the legislation coming from? Tonight noble Lords have fingered the Treasury. After talking with colleagues, as one does, I realise that they must be right. Apparently the Treasury are arguing that since the National Assistance Act 1948 local authorities provide services and the DSS provides cash and to transgress those boundaries is improper. That is all very well except that the boundaries are transgressed whenever it is thought convenient by the Treasury to do so. Noble Lords have given many examples but perhaps I may give a few more. Children leaving the care of local authorities can receive one-off payments from local authorities. Health authorities regularly make direct payments. Local authorities regularly give cash to a range of voluntary organisations which help disadvantaged and disabled people. Above all, every week of the year local authorities make cash payments to foster-parents for the care of children without any of the apparent anxieties about gambling, spending sprees, and so forth, about which we have heard from the Treasury.
The second argument which the Treasury appear to be employing is that of accountability. Is it really believed that disabled people who have the greatest interest in seeing that the money is spent wisely will be profligate and casual with it? After all, as my noble friend Lord Ashley rightly said, it is simple to set up ring-fenced bank accounts together with a dipstick monthly check of time sheets, pay slips and tax forms. 1661 In 1990 RADAR's survey showed that of the 65 local authorities which responded, two thirds were making payments directly or indirectly to disabled people. But because of the Government's, so far, folly most of them were having unnecessarily to launder—and I use the word advisedly—that at extra cost and extra bureaucracy through a holding trust. That is daft.
I am still trying to puzzle out the Treasury arguments. I have come up with a third argument which is still more cynical and which has not been mentioned tonight. I fear that it may be another reason why the Treasury are resisting this move. It is that the Treasury believes that cash payments are more visible than services in kind. Therefore they would be harder to cut, alter, rearrange or withdraw than services. It is that degree of disability and the difficulty of constraining or cutting payments should needs change that the Treasury seems to believe that local authorities cannot cope with in their relationships with local people. I hope that the Minister can deny that that is the Treasury's view. If it is its view, it is extremely cynical. I hope that I am wrong.
Perhaps I may make some comments in case that is the Treasury's view. First, the number of people who might receive cash payments as opposed to services is quite small. For example, in my own city of Norwich there are about 12,500 disabled people in a population of about 120,000, or about one person in 100. Only one-tenth of those under the age of 65 are receiving home care. That is about 1,000. And only one in 10 of those—103 to be precise—are severely disabled and receiving help from the ILF. Therefore, the potential client base is quite small and defined. The Treasury's fears about the explosion of cost and the cash kind implications are not well founded when one considers the substantial budgets of local authority social services departments.
Secondly, I suspect that the group which is most likely to benefit may well be younger people with spinal injuries. As I understand it, their medical condition is not that likely to fluctuate. Their needs are not that likely to change. Therefore, the need for the local authorities to adjust the cash package is a fairly remote possibility. Certainly, I cannot conceive that the individual client would resist that were that adjustment necessary. In trying to gather information over the weekend and today, I discovered that of the half a dozen or so local authorities which make direct cash payments, none has had any problem if it has needed to adjust the cash payments in the light of changing circumstances. I have no information that the ILF has had any problems, either, in that regard. After all, at the end of the day we are talking about a power and not a duty. The local authorities are in the best position, in consultation with disabled people, to make those judgments.
I hope that if local authorities believe that direct payments may save money, as they do, and that they will immeasurably improve the quality of a few people's lives, which they will, then their professional and financial judgment should be respected.
As another client, Jack, said, "I am a husband, a father and a breadwinner and 10 years ago I was in an 1662 institution where I could not even decide when I would go to the toilet". Or, in the words—more effective than those which I could use —of Peter Large of the Disablement Income Group, "This Bill means the difference between a life in which most of your choices are made by others, and a life in which you can mostly choose for yourself". I commend the Bill to the House.
§ 9.33 p.m.
§ The Parliamentary Under-Secretary of State, Department of Health (Baroness Cumberlege)
My Lords, the expertise and knowledge of your Lordships' House on this particular subject is recognised as being unparalleled. I should like to begin by thanking my noble friend Lord McColl for bringing this Bill before the House and allowing an informed and considered debate. My noble friend is extremely knowledgeable, having served as vice-chairman of the Disablement Services Authority as well as being closely involved in a number of organisations for disabled people.
For reasons that I shall outline later, I regret that the Government are unable to support the Bill this evening. I know that your Lordships will be deeply disappointed and I feel doubly sad because your Lordships have been so generous this evening. Perhaps this is the moment at which your Lordships should shoot the messenger. However, the Government's response will come as no surprise to my noble friend. I should like to pay a tribute to him and to the honourable Member for Mid Kent for their ingenuity in framing this Bill. It anticipates many of the objections which might have been raised against it—but alas, not quite all of them.
I must also thank other noble Lords who have brought weight and authority to this debate. Many, such as the noble Lord, Lord Ashley, and the noble Baronesses, Lady Darcy (de Knayth) and Lady Masham of Ilton, speak both with personal experience; other noble Lords, although not disabled, are closely involved with this subject and are energetic champions for the disablement lobby.
The effect of this Bill is to amend the National Assistance Act 1948. This was an important Act which laid a foundation for much of what survives today. However, since then we have seen a great change in attitudes to disability and disabled people.
Quite properly we have seen disabled people claiming rights for themselves: rights to live their lives independently and with dignity; rights to succeed or fail on their own merits, rather than on the basis of other people's perceptions of their abilities, or worse their disabilities; rights which others take for granted —for education, employment, leisure; or simply rights to live an ordinary life, in an ordinary setting shared with family and friends.
These rights have been won incrementally. Part of the credit must go to your Lordships' House, and to Members in another place, for forcing debate and bringing forward legislation which has helped move these issues forward.
No one could pretend that there are not more victories to be won. Society does not change that quickly. Even now there is a Private Member's Bill 1663 before another place, which seeks to ensure an end to discrimination. Again, though we disagree about the methods, I can assure your Lordships that the Government are in agreement with the aims of that Bill. Discrimination benefits no one. People have rights and those rights must not be ignored.
The Joseph Rowntree Foundation recently published a report by Dr. Jenny Morris about people's experience of direct payments from the Independent Living Fund. I believe that the noble Baroness, Lady Hollis, picked some of the examples that she gave the House this evening from that research. The research found that some disabled people resented the attitude of some social service authorities which treated disabled people as recipients of charity. If disabled people feel this, then something is awry—not with the notion of statutory services, but with the way that they are delivered. The day of the passive recipient of care has passed. Services are there to serve. That means treating people as individuals with legitimate expectations of quality, rather than as lucky beneficiaries of public munificence.
Those are issues which the community care Act seeks to address. We fully support the aim of enabling disabled people to live independently and to exercise choice. We wish to give local authorities freedom and flexibility to meet those choices in innovative ways and to see disabled people placed at the centre of decision making.
The new Act is based on the conviction that people who are receiving care are entitled to say what support they would like, and that those views are given the weight that they deserve. Personal assessment, which is the bedrock of the reforms, must be a joint exercise carried out by equal partners.
Wider choice means increasing both the range of services, and the variety of organisations which supply those services. Authorities in England are obliged to spend the majority of their special transitional grant on services provided by other people. That should stimulate innovation and encourage agencies which are imaginative and willing to pioneer new approaches.
But the new arrangements for community care do not exist in a vacuum. Disabled people also have long-standing rights under the social security system. The Government have a good record on benefits. Spending has trebled over the past 14 years and currently stands at £14.9 billion. This year alone we plan to spend an extra £300 million over and above inflation, to help around 850,000 disabled people.
Currently, 149,000 people receive invalidity benefit. That is the major long-term benefit for people who are incapable of work. Moreover, 320,000 people receive the severe disablement allowance. That is more than twice the number who received it in 1978–79. Over 430,000 disability living allowance awards have been made and 235,000 people have gained from the introduction of the new rates. In 1992–93, 287,000 people received both components of DLA. When it is fully established, we expect 50,000 people to receive the disability working allowance at any one time.
The Independent Living Fund was set up in 1988 as an interim measure, pending introduction of the new 1664 community care arrangements. However, its success which was highlighted by your Lordships tonight has encouraged us to retain a fund to help those who are most severely disabled. The key strength of the ILF was that it could give cash, giving disabled people greater independence to determine how best to meet their own needs. It is right that that should be carried forward into the new arrangements.
The fund will operate in partnership with local authorities and will provide an additional option for the most severely disabled people. We expect that, each year, around 1,500 people will get a cash payment from the new fund as well as help from their local authority. Total funding for the new independent living arrangements—including the extension fund which will continue to help clients of the old ILF —is around £161 million. That is a massive increase from the expenditure of £1 million five years ago when the ILF started.
The noble Baroness, Lady Darcy (de Knayth) suggested that the new ILF arrangements will mean that a smaller percentage of the package will be given in cash. Under the old ILF regime clients also received a mixture of services paid for by the local authority and cash from the fund. The new scheme shifts the balance of support but ensures that in future the two parts of the package are brought together so that the client receives a coherent package of care agreed jointly by the disabled person, the local authority and the new fund.
My noble friend Lord McColl, the noble Baronesses, Lady Hollis and Lady Darcy (de Knayth), and many other speakers spoke of the importance of people being able to choose their own personal care assistant to carry out what the noble Baroness, Lady Masham, described as intimate tasks. The noble Baroness, Lady O'Cathain, also spoke movingly of the importance of human dignity.
Local authorities are free to contract with anyone for the provision of care, including individuals acting as personal assistants. When the care plan is drawn up between the disabled person, the local authority and the ILF we would expect the local authority to make sure that the disabled person had as great a say as possible as to who is to be employed to provide the care. There is no reason why a care assistant should not be personally chosen by the disabled person.
The Government are doing a great deal, both through reforms to social services provision and through the benefits system, to ensure that people receive the support and care they need to live independent and fulfilled lives. That is right and proper. But this support comes from two sources: local authority social services departments on the one hand and the social security system on the other. Both have important roles to play and to a great extent they work to the same end, supporting an individual in the community. However, they are different roles. I hope that that picks up the point raised by the noble Lord, Lord Murray of Epping Forest. Social services departments arrange exactly that—services. The Benefits Agency provides cash benefits. It is the business of the social security system to provide cash to support individuals in need. It is not the business of 1665 local authorities. They are providers, enablers and facilitators of care services. It would be difficult for them to manage a general system of cash payments, including defining eligibility, and to carry out the necessary monitoring to keep control over public funds.
Social services authorities do not work like the social security system. The concept of simply trying to match a cash amount to a particular set of needs is at odds with the idea of a flexible response to individual circumstances. There is a real danger that all that would be achieved is the creation of a separate social security system within social services, with its accompanying rigidity. That in turn would restrict authorities' flexibility to meet local needs and their ability to obtain value for money for all the people they serve. The payment of cash to individuals is not a responsibility that we think it right to add to authorities' already very full agendas.
I hope I have made it quite clear, however, that we support the view that disabled people should not be passive recipients of care but should be in control of decisions about their lives. The new community care arrangements are designed to facilitate exactly that. There is no reason, for example, why disabled persons should not take on the day-to-day management of their carers if they wish to do so, or to help to choose them in the first place. Many already do this and it could quite easily be written into contracts with care providers.
My noble friends Lord McColl and Lord Swinfen and the noble Lord, Lord Murray of Epping Forest, argued that disabled people get better value for money from direct payments. I do not doubt that in individual cases disabled people may be able to use money more effectively than certain authorities, but we need to look not only at the particular but at the overall effects of making direct payments part of the social services system. In our view there is a risk that over time they will lead to a degree of inflexibility and will adversely affect authorities' ability to match their resources to all local needs, not just those of people receiving direct payments.
The noble Baroness, Lady Darcy (de Knayth), gave compelling and practical examples as to why direct payments mean independence. It is important to distinguish between direct payments and care in the community. Of course a disabled person who is supported to live in his or her own home is more independent than someone in residential care. But people can and do achieve that independence without the need for direct cash payments.
The noble Lord, Lord Murray, mentioned direct payments in Scotland. Local authorities in Scotland do have a power to make cash payments, but it is a limited one. Cash payments may be made only in an emergency and where that would be cheaper than some other form of assistance or where aggravation of the individual's need would cause greater expense to the authority on a later occasion.
My noble friend Lord Swinfen, the noble Lord, Lord Ashley, and the noble Baronesses, Lady Darcy (de Knayth) and Lady O'Cathain, asked why the 1666 Government do not trust disabled people. I am glad to be able to say that our disagreement with the Bill is not because we do not trust disabled people. There is no reason to think that disabled people should be any more or less capable as a cross-section of society than any other. If the Government held the belief ascribed to us, we would not have a range of benefits for disabled people nor the 1993 Independent Living Fund. We do not fear that disabled people would misuse direct payments. What we fear is rather that the introduction of regular, direct payments into the rest of the social services framework will tend to imbalance arrangements and make it more difficult for authorities to discharge their other functions.
There is a great deal of agreement between us this evening. Disabled people have a right to live the ordinary, straightforward, independent life that so many of us take for granted. They cannot, must not and will not be denied that fundamental right. I believe that we are at one in our objectives; we simply differ in our estimation of the most appropriate and practical means of achieving them. Our community care reforms are all about independence. They have only just begun and it will take some time for us to see all the benefits that they will bring, but those benefits will come and individuals will receive the coordinated, high quality and appropriate care they need, want and deserve.
§ 9.47 p.m.
§ Lord McColl of Dulwich
My Lords, I should like to thank all those who have taken part in the debate tonight. The contributions have been absolutely splendid. I feel a little sad that the Treasury has taken such a bashing. Whatever their faults the staff of the Treasury are highly intelligent people and I am sure that they would not have made the mistake of thinking that the condition of severely disabled people improves very much. Therefore, I am sure that they would not take the cynical view that it would be difficult to change the amount of cash provided because of improvements in the condition of a disabled person.
I should also like to echo the words of the noble Lord, Lord Ashley, who thanked those outside this Chamber who have made such a contribution. I am thinking particularly of Fidelity Simpson who has been a tremendous help in all our endeavours.
Finally, I ask the House to give the Bill a Second Reading.
On Question, Bill read a second time, and committed to a Committee of the Whole House.