Previous Section Back to Table of Contents Lords Hansard Home Page

Earl Ferrers: My Lords, does the noble Lord the Chairman of Committees agree that it was not the Clerk of the Parliaments who gave the advice that the Lord Chancellor should do away with his breeches and buckled shoes?

The Chairman of Committees: My Lords, with the leave of the House, I am interested to hear that remark. If it was not the Clerk of the Parliaments, the noble Earl has not enlightened us as to who it was. I said that it was the Clerk of the Parliaments who tendered this suggestion to the Offices Committee. After the committee had approved it, your Lordships embraced it.

Lord Stoddart of Swindon: My Lords, perhaps I may say how grateful I am to the Clerk of the Parliaments that he was able to persuade the Procedure Committee to do away with the altogether boring reading of the Queen's Speech, which most people had already heard or read. It was a chore that all Members of the House had to put up with. I am sure that noble Lords will join me in expressing gratitude that this is now to be done away with.

The Chairman of Committees: My Lords, I believe that the point just raised by the noble Lord, Lord Stoddart of Swindon, speaks for itself. Most, if not all, noble Lords will be aware that, following the presentation of these reports, there is a debate rather than a question and answer session. Therefore, it is the duty of the Member of your Lordships' House who moves the Motion to make an all-embracing wind-up speech at the end of the debate.

Lord Peyton of Yeovil: My Lords, I should like to return to the point raised by the noble Lord, Lord Cocks. Does the noble Lord agree that the House would be assisted if, when a new version of a complicated rule such as sub judice was published in a

19 Apr 2000 : Column 712

report, the particular changes were notified and made clear; otherwise, very few people would be able to recite the old rule from memory?

The Chairman of Committees: My Lords, there is not a resolution before your Lordships' House. The terms of a proposed resolution are included in the report of the Procedure Committee. After the combined Easter and May Day Bank Holiday Recess the resolution, which is to be moved by the Leader of the House, will be placed before your Lordships for consideration. As to the distinctions, I shall look into the matter. If any additional help is available before the resolution is moved it will be provided. But I am sure that the resolution itself will be clear, as I hope it is from the terms of the report.

Lord Cockfield: My Lords, perhaps the noble Lord can clarify one matter to which he referred earlier. The Leader of the House is given a discretion. Is it only a positive discretion or is it also a negative one; in other words, can the Leader of the House stop debate on a matter which is covered by the general clause--I do not refer to the detailed provision--or can she only allow discussion, as it were, which would otherwise not be appropriate?

The Chairman of Committees: My Lords, on the whole the discretion is negative, in that the Leader of the House would normally advise your Lordships that the matter was sub judice and therefore it should not be referred to. I make that qualification at the outset of my response to the noble Lord, Lord Cockfield, because if on an appropriate occasion the Leader of the House advises waiver in one or other of the circumstances intimated in the proposed resolution, that may be seen as a proposal to deal with the matter in a positive way.

On Question, Motion agreed to.

Chronically Sick and Disabled Persons Act 1970

3.23 p.m.

Lord Rix rose to call attention to the 30th anniversary of the Chronically Sick and Disabled Persons Act 1970, and to developments in the provision and planning of community care services for disabled and elderly people; and to move for Papers.

The noble Lord said: My Lords, in a happy conjunction of circumstance this debate coincides with the inauguration of the Disability Rights Commission which for the first time provides a powerful watchdog for the rights of disabled people. We wish the chairman, Bert Massie, and his fellow commissioners every success in their future endeavours. Many of us who are to speak this afternoon have fought for those rights over the years and are delighted to have a statutory body to take on that role. We signed up to the cause of disabled people in those heady days when disability was becoming a social policy priority and social security, social services, education and public

19 Apr 2000 : Column 713

attitudes were all being realigned in the interests of disabled people. I feel honoured, therefore, in this short debate to celebrate the Bill of the noble Lord, Lord Morris of Manchester, which, with the support of both Houses, became an Act 30 years ago.

The years 1970 and 1971 were particularly good. One had the Chronically Sick and Disabled Persons Act; the White Paper on learning disability Better Services, attendance allowance and invalidity benefit and the Education (Handicapped Children) Act which ensured education for children with severe learning disability who had hitherto been excluded from the education system. Looking back, I recall an anxiety to discover and explore new ways to spend money, as opposed to the disposition in recent years (fulfilled or not) to reduce public expenditure and the new orthodoxy of a lot more work and rather less welfare. If I remember correctly, we had 10-year plans at about that time. We also had the fruits of the Government Survey of Disability, in the creation of which the noble Lord, Campbell of Croy, played a significant part. It was a remarkably new experience to have some credible figures on which to base longer-term policy decisions, although the use of those figures to produce estimates of the number of people likely to qualify for the new disability benefits was as much an act of faith as a parade of knowledge.

We have come a long way in a comparatively short space of time, particularly in the field of learning disability. Noble Lordships will forgive me if, as President of Mencap, I am biased in that direction. I am sure that other noble Lords will apply the necessary touch to the tiller. The statistical baseline for the learning disability White Paper in 1971 was 1968-69, which was only a year or two after the population of the old "mental handicap" hospitals had peaked. Today only about 3,000 people with learning disabilities still live in hospitals, and the 60,000 to 70,000 hospital population has become a 60,000 to 70,000 care-in-the-community population.

The children who were denied education because they were deemed ineducable now almost universally attend school, and a good number have gone on to further education. Some have successfully completed Open University courses. In particular, several hundred have completed a course designed with the help of Mencap. Thirty years ago we talked about people; now we talk with people who have learning disabilities and, in the process, learn a good deal.

But some things have not changed. Much the same proportion of adults with severe learning disabilities now live with their families as they did in 1969, despite the population being older and more severely disabled. Some of them are the same people. For them and their families inevitably there is a sense that nothing much has changed, except a diminution in the ability to cope with the passing of the years.

Other noble Lords will deal in more detail with some of the themes that cluster around the Chronically Sick and Disabled Persons Act and the Community Care Act. In my remarks I want to pick out some of the main themes and say a little more about the learning

19 Apr 2000 : Column 714

disability strategic review which is now in progress. There is much to celebrate. I want to highlight the goods things, not just the deficiencies, substantial though they still are.

I intended to describe those main themes as the "Munroes of community care". However, the mountaineers and Scots in your Lordships' House are conscious of the number of Munroes and therefore will be apprehensive as to the length of my speech, which is still limited to 15 minutes. I shall be more selective and pick out just seven themes in this overview: the shift from discretionary services to rights; the importance of employment in daytime occupation; the controversy over charging; the Scylla and Charybdis of funding and rationing; the role of advocacy; the focus on individuals; and, predictably, short-term breaks.

The Chronically Sick and Disabled Persons Act was about three things: the identification of disabled people, their involvement and their rights. Involvement and rights go together, in that people should be listened to and at least have the right to some of the things that they say they need to balance out the disadvantages imposed on them by society because of their impairments. Twenty years ago the NHS and Community Care Act dealt with process rather than rights, and that perhaps accounts for the gap between expectations and what has been achieved under the Act. Without the Chronically Sick and Disabled Persons Act, those parts of the Disabled Persons Act 1986 which have been implemented and our old friend the National Assistance Act 1948, the Community Care Act might be characterised as being about paper rather than people. In context, however, it offers something like a right to recognition, assessment, a statement of needs and wishes and at least an indication of what will be delivered.

My hope is that the rights agenda is now, with direct payments and the development of specific service standards, beginning to loom larger with fewer "ifs" and "buts". Across the rights path lies the shadow of the Gloucester judgment on which no doubt other noble Lords may wish to expound. Recognising that that judgment reflected the reality that local authorities cannot spend money they do not have and would be unwise to plan on the assumption that they can, I want to link it in with rationing and resources.

There is a very real dilemma here. The Government say that they are spending more money; and they are. The local authorities say that they do not have enough and are having to cut back. Clearly they do not have enough and are having to cut back. The daughter of a friend of mine is having £20,000 per annum pruned from her funding. Needs are increasing. Needs are being better recognised. Governments have consistently allocated less than most local authorities actually spend on social services; and once increased allocations cannot be topped up from other sources, the gap between needs and resources means cutbacks. When I managed a theatre, spent more on the production than I received from the audience, and

19 Apr 2000 : Column 715

could not bridge the gap by selling programmes and chocolates, I had problems: the risk of having to put on "Hamlet" without the prince.

A good many people feel that their local authority has splendid plans, high principles, good intentions but no prince. That is why consultations on future developments sometimes receive a dusty response. People say, "Well, they know what we need now, and they can't deliver; why waste time asking for future developments which they won't be able to deliver either?" To try to bridge the funding gap, local authorities, under the pressure of government expectation, are charging for services. This results in family carers who are already having to carry the burden and some of the cost of community care having to carry more burden because they opt out of services, or more cost because they have to pay for services. Mencap has had people on the phone actually in tears saying that they cannot afford the cost of what they desperately need.

I hope that when Ministers make their announcements about charging, they will at last bite the bullet and standardise, if they do not abolish, charges. If charges continue, disabled people must be left with enough money to stay above the poverty line. That is not always the case today.

I want to run together two of my other themes: advocacy and treating people as individuals. If our services were to be group solutions for groups of people, we would by definition not have individuality, and we would not be much bothered about advocacy. If, on the other hand, we accept that the desired outcome is individual solutions addressing individual needs in the light of individual choices, we need advocates. I signed my contract as Secretary-General for Mencap almost 20 years ago today. As secretary-general I helped to found the Advocacy Alliance. But without effective advocacy I think it is clear that we cannot secure civil rights in line with the Disability Discrimination Act, rationalisation of decision making under the Government's "making decisions" proposals, or appropriate access to social services, lifelong education or healthcare. It is equally clear that most people who can talk for themselves cannot readily secure the attention of those who should be listening to them, and that most people who need independent advocacy simply do not have it. I hope that when replying, the Minister can offer us some glimmers of hope here.

I turn to the last of my overarching themes: short-term breaks and employment. Seen from the perspective of disabled people and family carers, both are concerned with trying to secure as far as possible a normal life. Short-term breaks give the disabled person and the family carer a chance to enjoy personal space, to do their own thing, to grow apart without falling apart. A Mencap colleague is having to give up her work for Mencap because she cannot secure decent respite for her severely disabled son while she does her voluntary work for Mencap. Employment means for family carers and for disabled persons doing what most people of working age want to do, and enjoying

19 Apr 2000 : Column 716

the wider contacts and the possibility of higher income which go with that. But 90 per cent of severely disabled people of working age do not have paid employment.

I acknowledge the Government's carers initiative even if the early evidence is not terribly encouraging in terms of the extra money securing either innovation or allocation to short-term breaks. I acknowledge, too, the positive aspects of the New Deal and the awkwardly-named "One". Some disabled people are now doing paid work who would not have had the opportunity without the recent initiatives. But I would welcome two reassurances. One is that the Government will continue to encourage agencies to provide individually tailored short-term breaks and discourage doctrinaire approaches to respite, which assume that only one model, and that commonly the cheapest, is right. "We only have family-based respite" is not a principle policy to be warmly welcomed. It is an abandonment of responsibility for those for whom that model at this time is not appropriate.

On employment, I seek the assurance that this will be encouraged but not enforced on those with substantial disabilities, and that there will be recognition in day service policies of the reality that employment can only provide some of what is needed for some of the people for some of the time. Shutting the day centres on the ground that everyone has got a job would, I believe, be a little like the heady and ultimately fatal optimism of Marie Antoinette that those without bread could fill their bellies with cake.

Finally, I turn to the learning disability strategic review. I welcome wholeheartedly that the original White Paper may be replaced 30 years later by a new White Paper, and the way in which interested parties--and not least people with learning disabilities themselves--are being involved in developing the new policies. I am conscious that we shall not see the end product until the end of this year or the beginning of next year, and I recognise that the Minister will not want to commit himself firmly at this stage; but I offer three propositions for comment if the Minister feels so inclined.

First, there is clearly a case for a policy document of the White Paper kind spelling the whole range of Whitehall responsibilities, rather than something more modest such as an interdepartmental circular. Secondly, it would be in line with the focus on outcomes judged by individual experiences to build into that White Paper personal stories which show the huge progress made and personal aspirations on which the Government intend to deliver. Thirdly, it should help to maintain the impetus for implementation over the next few years to have a central advisory committee on learning disability support and opportunities backed by a research programme and network.

I conclude by hoping that I have learned over the years to avoid both the cynicism of failing to recognise what is good and hopeful and the unreasonable optimism which ignores what is palpably bad or doomed. I have seen so many people with learning disabilities achieve what it was said they never would that I have high hopes that from the legislative base of

19 Apr 2000 : Column 717

the CSDP Act, and the measures which have succeeded it, and through the current review, we shall see over the next 30 years at least as many improbably successful things as we have seen over the past 30 years. I also have high hopes that we shall measure outcomes in individual lives and not just in statistics. The Chronically Sick and Disabled Persons Act made the jump from "the disabled" to "disabled people". I look forward to the contributions of other noble Lords. I beg to move for Papers.

3.39 p.m.

Lord Morris of Manchester: My Lords, I am most grateful to my friend, the noble Lord, Lord Rix. It is highly appropriate for a distinguished Cross-Bencher to have opened this debate: for those who laboured with me to enact my Bill were not of one party. They were of all parties--and of none--but of one mind. They were determined to create for disabled people an Act they could call their own: to help to reduce their dependence on others, to help them to live as normally as possible in their own homes, with their own families, and to have the same opportunities as everyone else to contribute to the life and work of their society.

However, that was then widely seen as an impossible dream. In 1969-70 no one knew even approximately how many disabled people lived in Britain. They were mostly seen or heard only by their families or, if locked in institutions, by those controlling their lives. To talk then of as-of-right cash benefits for disabled people and their carers was to invite ridicule. Local services were wholly discretionary and often non-existent, but council leaders were serenely satisfied with the status quo. That is how things were when, against all the odds, my Chronically Sick and Disabled Persons Bill became law in 1970.

For the noble Lord, Lord Rix, to have opened this debate is most appropriate for another reason. In the Chronically Sick and Disabled Persons Act the term "disabled person" includes, and always has included, what might be called the noble Lord's constituency. The symbolism of the wheelchair is powerful, and rightly so, but the Act also embraces millions of people with impaired hearing, impaired sight, impaired intellectual functioning and learning disabilities which can affect mobility but do not involve using a wheelchair.

For a Back-Bench MP, first place in the Private Members' ballot is the most coveted prize in the lottery of parliamentary life. But Ministers whose departments are affected by a Back-Bencher's Bill may not share their delight. The late Richard Crossman, then Secretary of State for Social Services, was not best pleased when he heard that I intended to present a Bill to improve the well-being and status of disabled people and their carers. As Tam Dalyell, then Crossman's PPS, writing to me some years later recalled,

    "I well remember Dick trying to bully you into either changing drastically or dropping the Bill at more than one point--in vain."

Dick Crossman was not the only Minister who initially wanted me to drop the whole idea. Education Ministers asked why my Bill proposed help for people with dyslexia--a condition which they said "simply

19 Apr 2000 : Column 718

doesn't exist". To which I replied "Then it won't cost you anything!" Official reaction to my Bill's provisions for helping deafblind children and those with autism, like the proposal for an institute of hearing research, was even less supportive. Thus the Bill's prospects looked bleak.

The pessimist, they say, is an optimist who has been given the facts. Happily there were those all across Parliament who, despite knowing all the facts about the extent of ministerial opposition and the heavy odds against my ever securing a money resolution, remained optimistic that the Bill could succeed. In another place they included my very good friend Jack Ashley, as he then was; the late John Astor; Lewis Carter-Jones; the late Sir Neil Marten; the late Laurie Pavitt; and the late Maurice Macmillan; and in your Lordships' House there were my noble friend Lord Longford, then a recent former Leader of this House, who sponsored the Bill with all his customary kind humanity; my friends, Lady Masham and Lady Darcy de Knayth; my noble friend Lady Serota; the noble Lord, Lord Cullen; and the late Lady Pat Lewellyn-Davies.

Everyone who worked to enact our Bill will remember how often and how close we came to disaster. But it was Dick Crossman's main Bill of that parliamentary session which hit the rocks while ours sailed safely by. The Bill became an Act of 29 sections. It imposed new duties and responsibilities on 12 departments of state and became the model for legislation across the world. It amended 39 existing Acts of Parliament in the interests of disabled people, including such major statutes as the Public Health Act 1936, the Education Act 1944, the National Health Service Act 1946 and the Housing Act 1957. Moreover, it was in debates on our Bill that the terms "social exclusion" and "community care" first came into vogue.

In the decade after the Bill's enactment huge leaps were recorded in the numbers of people identified as disabled; millions were helped by the provision of aids, by adaptations to their homes and by the Act's five sections on access to the built environment, the first such legislation anywhere in the world. It is estimated that, in its first 25 years, 12 million people in England were helped under Section 2 of the Act alone. In Scotland, over a shorter period, 1.9 million were helped. Those are minimal figures, since they do not, for example, include 1.7 million Orange Badge holders and countless millions more beneficiaries, here and abroad, of its access provisions.

But this debate is also about what is happening now. In the very short time left to me I want to comment, as promoter of the Act, on the perverse--in fact bizarre--judgment in the case of Regina v. Gloucestershire County Council and the Secretary of State for Health, ex parte Barry (the so-called Gloucester judgment). Since that judgment, the provisions of Section 2 of the Act have been trampled on in many parts of Britain. Those responsible for the judgment seemed to think I drafted it on the back of an envelope. In fact, it was drafted with unfailing help from the leading parliamentary draftsman of his day, the father of a disabled child, whose expertise was gifted in his own

19 Apr 2000 : Column 719

spare time. The policy intention of ensuring that help for disabled people would in future depend not on where they lived but strictly on the extent of individual need was made utterly clear at all stages of the proceedings of the Bill. The drafting is also clear--as clear as Britain's foremost parliamentary draftsman could make it.

Section 2 opened up the opportunity for a life of dignity for disabled people. Now it has been put in abeyance by judge-made law in direct defiance of a statute that was far better drafted than most legislation I have seen in my 36 years of parliamentary life. The result is documented in graphic detail in Out of Service, a dossier of distress published by the Needs Must coalition of disability organisations, which shows that one shameful consequence of the Gloucestershire judgment is the denial to many housebound disabled people even of the right to a bath, now one of the most fundamental of human rights and well respected in our prisons.

As the noble and learned Lord, Lord Lloyd of Berwick, saw--clearly after studying the parliamentary proceedings on Section 2--it was no part of our intention to turn services for disabled people into a postal code lottery. For others to suggest the contrary was a crude and ludicrous distortion of the parliamentary record.

I know that my noble friend the Minister recognises that the current crisis in community care--for which disabled people and their carers all over the country blame the Gloucestershire judgment and the now almost equally notorious Powys judgment--is placing an increasingly daunting strain on the NHS. It is a crisis that demands urgent action. Not to act now to reverse the immense damage of these judgments would be to dishonour those in all parties who worked long and hard and with deep commitment and sincerity to achieve the enactment 30 years ago of a measure that a senior French legislator was soon afterwards to describe as a moment critique for disabled people everywhere.

4.47 p.m.

Lord Campbell of Croy: My Lords, I first declare an interest. I was wounded and partially disabled in the Second World War, and have received a war disability pension since leaving hospital more than a year after the war.

I congratulate the noble Lord, Lord Rix, on initiating this debate. He did dedicated work leading Mencap, and we worked together in 1981, when we were both playing parts in the International Year of Disabled People.

I am also glad to follow the noble Lord, Lord Morris of Manchester, because the 1970 Act would never have reached the statute book without his resolve and skilful piloting.

I am glad to speak on the Motion recording the 30th anniversary of the Chronically Sick and Disabled Persons Act 1970. As I am limited to seven

19 Apr 2000 : Column 720

minutes, I shall concentrate on that part of the Motion, in the hope that that is the most useful contribution I can make.

I was much involved over 30 years ago, when I was in opposition and in the shadow Cabinet, and later when I had become a Cabinet Minister, in putting parts of the Act into effect.

The Act started as a Private Member's Bill introduced in the other place by the noble Lord, Lord Morris, after he had come first in the annual ballot in November 1969. The noble Lord deserves the greatest credit. As he has publicly announced, and repeated today, the then Secretary of State for Social Services, Mr Richard Crossman, disapproved of what he was doing and tried to stop the Bill going forward. The noble Lord received no help from the Government in drafting the Bill, although such help can normally be expected. But he persevered with determination and, I am glad to say, with success.

I had experienced similar, but worse, treatment a year before, when I was successful in the ballot in 1968. My Private Member's Bill, entitled the "Disablement Commission Bill", was lost when a Division was forced by the Government, a Labour government, at the end of a Second Reading debate, with the government's whipping applied.

The only excuse that can now be given for such treatment is that my Bill was 30 years before its time, particularly as in the past two years we have helped to pass the Disability Rights Commission Act--and the Disability Rights Commission begins its life today, more than 30 years after I introduced my Bill!

I entered the other place five years before the noble Lord, Lord Morris, and at that time had been depressed by the absence in the country of help with disabilities not caused by war or industrial injury. However, I was on the Back Benches for only a year and a half, after which I had to apply myself to other subjects from the Government Front Bench.

Owing to the limited time available, the Bill which the noble Lord introduced in 1969 applied only to England and Wales. During its Committee and Report stages, I managed to arrange for parts of it to be extended to Scotland. A year or two later when I was Secretary of State for Scotland, I was able to complete its application to Scotland.

The Bill had almost completed its passage through Parliament when a general election was called for June 1970. Other Bills fell by the wayside in the normal way, but I am pleased to say that inter-party agreement was reached for this Bill to be reintroduced early in the following Parliament. The Conservatives won the election and honoured the agreement. The Bill was reintroduced and was quickly passed into law. I became Secretary of State for Scotland and, because both health and local government were totally devolved to the Scottish Ministers and the Scottish Office, I had the welcome duty of putting parts of the Act into effect north of the Border.

The 1970 Act was a bright beacon on the way to improving ordinary life for disabled people. For the next 24 years, further legislation on disablement was

19 Apr 2000 : Column 721

attempted but only in Private Members' Bills. However, in 1994-95, a giant step was taken when for the first time a government introduced a Bill on the subject. It became the Disability Discrimination Act 1995; the DDA.

I am sorry sometimes to hear derogatory remarks that the DDA is "flawed". When asked why, the reason given is that it does not cover enough. That criticism is a misuse of English. To give the impression that the DDA is defective because it does not deal with every part of the huge range of issues affecting disabled people is misleading and a disservice to disabled people and their carers, who are already discovering much in it to help them.

No Act could have covered the whole field. We should have still been waiting for the DDA if that had been attempted. But I confidently expect another government Bill to be brought forward in due course to continue the process. In 1995 the DDA carried out more than 20 Private Members' Bills could have achieved. It even tackled the difficult and complex subject of transport; and it was the first government measure on disablement.

As I have one minute left, I turn to the services made possible for local authorities to provide under Section 2 of the 1970 Act. I agree with what the noble Lord said about the decision in the Gloucestershire case. I am greatly concerned about the many reports of the reduction and withdrawal of services that are necessary for disabled people to live independently. Furthermore, I refer the Government to the "Needs Must" campaign and to its recent report, Out of Service. I earnestly hope that the Government will take that report fully into account.

3.54 p.m.

Baroness Barker: My Lords, during the comparatively brief time I have been a Member of your Lordships' House I have come to appreciate that the noble Lord, Lord Rix, often has the best lines. We know well that he has great timing but never more so than today. When the cast list for the debate appears, my name will probably appear down near that of third electrician or someone similar, but none the less I want to thank him for raising this timely debate today.

When I noted the title of the debate I wondered whether several current Members of your Lordships' House who were responsible for the passage of the Bill 30 years ago might line up to take a bow. I am glad that they did and I salute collectively what they did. It set a mark from which all services for disabled people will be measured.

Today, as we enter the era of PCGs, clinical governance and national service frameworks, it serves us well to reflect on the intentions set out in the Chronically Sick and Disabled Persons Act, to assess the effects of the National Health Service and Community Care Act and, learning lessons from both, to state clearly not only what are acceptable levels of services and social care, but how such standards should be determined and by whom.

19 Apr 2000 : Column 722

The Chronically Sick and Disabled Persons Act refers to the provision to a disabled person of,

    "adaptations, services and any additional facilities to secure his greater safety, comfort and convenience".

It refers to services such as practical assistance at home; assistance obtaining access to wireless, television, library or other recreational facilities; games or outings, or other recreational facilities outside the home; and the provision of, or assistance with, travel to or from such facilities.

That list, were it to be reproduced in a community care plan or health improvement plan today, would look out of place not because of the language but because items such as those simply would not appear in a list of priorities for any social services department. Individual older or disabled people may realise the importance of leisure and transport, but it is doubtful whether the community care budgets for older people would stretch that far.

Over the past 30 years a paradox has developed in which the direct involvement of older and disabled people in the planning and evaluation of services has greatly increased. The National Health Service and Community Care Act placed upon local authorities and health authorities a requirement to consult users about the planning and provision of services. Consult they did, zealously so in some cases, and involvement of older and disabled people became, first, an expectation and then the norm. However, at the same time, the right to services was eroded as eligibility criteria were drawn ever tighter. Many people, although more involved, witnessed the demise of services which they saw to be important; services such as home helps.

Many people's 65th birthday is not a time of celebration. In terms of social care, they move from social services' "younger adult" budget to the "older people" budget. At that time, although their physical and health needs may not change, the services which they receive and their right to receive them fall dramatically. We know that the Department of Social Security and the Department of Health, among others, use age as a defining criteria. People who become disabled after 65 do not qualify for the disabled living allowance. Although many of them receive an attendance allowance, there is no mobility component to that benefit.

At the beginning of this decade, against a background of economic prosperity and in the context of the Government's policy of combating social exclusion, basic questions about the social care of older and disabled people remain to be addressed. Why are thousands of older people losing their mobility because there is no one to cut their toe-nails? Why are so many people with moderate disabilities having to pay for the help they need, such as home help, than was ever the case in the past?

The noble Lord, Lord Morris, raised a very important question: is a bath a social bath or a medical bath? It is neither; it is a human right. That is a most important answer. When the Human Rights Act 1998

19 Apr 2000 : Column 723

comes into force later this year, many of the issues which noble Lords have raised about levels of care will become challengeable in the courts.

My suggestion to the Minister today is that we should avoid the need for individual older and disabled people to suffer indignities and take their cases to court by saying now that we have learnt one of the most important lessons from the Chronically Sick and Disabled Persons Act: that rights without resources do not mean very much. We do older and disabled people no favours by giving them frameworks and approaches which are inclusive and contain the terminology of inclusion if, at the end of the day, there are simply not enough resources to make something happen for them.

Thirty years ago, many noble Lords put down a marker that social care was concerned with the safety, comfort and convenience of disabled and older people. Today, we talk about social inclusion. The best thing we can do is to put on record in the House today that, 30 years on, we have a clearer understanding and can employ better words to express the rights of disabled and older people to be included in society. It is not only for their personal and individual better health; it is for our greater benefit.

I thank the noble Lord, Lord Rix, for his very timely debate, and I exit the stage.

4.1 p.m.

Baroness Darcy de Knayth: My Lords, I congratulate my noble friend Lord Rix, both on winning the ballot so that we can celebrate the 30th anniversary of the Chronically Sick and Disabled Persons Act and on the masterly and comprehensive portrayal that he has given of life for disabled people over the succeeding years.

When the noble Lord, Lord Morris of Manchester, won the ballot in 1969, he could have taken the easy road to fame with a pre-written, non-controversial Bill. However, as noble Lords have already heard from the noble Lord and from the noble Lord, Lord Campbell of Croy, by his unstinting efforts he instead transformed a Bill, strenuously opposed by many and without a money resolution, into an Act of considerable importance for people with disabilities.

I was honoured to make my maiden speech at Second Reading of the Bill when it was introduced into this House by the noble Earl, Lord Longford. My noble friend Lady Masham also made her maiden speech, as did Lord Ingleby. The fourth Member of the mobile Bench was Lord Crawshaw, and I should like to pay tribute to them all for working tirelessly for disabled people over many years.

I spoke then on the need for improved outdoor mobility help for disabled people, including those too disabled to drive themselves. Therefore, I was particularly delighted when, a few years later, as Britain's first Minister for disabled people, the noble Lord introduced the mobility allowance. I should also like to mention the huge contribution made over the

19 Apr 2000 : Column 724

years by Sir Peter Large. He briefed me for my maiden speech and I am much indebted, too, for his thoughts today.

The Act did not solve every difficulty faced by disabled people but it helped to solve many. It put disabled people firmly on the map; it gave them confidence; and it established a sound basis for further progress. Lately, however, that progress has slowed down and in some cases has even gone into reverse. The emphasis now seems to be on children and child poverty and elderly people and pensioners' poverty. Regrettably, the Government's grand design for tackling poverty does not appear to cover the poverty of disability.

If that sounds carping on a day when the Disability Rights Commission makes its debut, in the year that all black cabs become accessible, and access and education opportunities have improved, I would ask noble Lords to consider. We have seen the abolition of the severe disablement allowance and the introduction of means-testing for incapacity benefit. That means that for single people aged 45 or over the means test will take effect when their annual income reaches a mere £7,900. How can anyone on that income be an appropriate target for means testing? The entitlement to a contributory benefit of a married man under 45 will be completely wiped out when his annual pension income reaches £15,500. I ask noble Lords to contrast that with the upper earnings limit of the new children's tax credit, which will be approximately £38,500. How can one reconcile that with the proposals that every pensioner, regardless of health or wealth, be issued with a free half-fare bus pass, an annual £150 winter fuel bonus and a free telly, to boot, for everyone over the age of 75?

As the Needs Must coalition report shows--as I am sure the noble Lord, Lord Morris of Manchester, has already said and as I am sure the noble Lord, Lord Ashley, who is to follow, will make very plain--services for disabled people who try to live independently in the community are being inexorably reduced. The introduction of both the minimum wage and holiday entitlements has increased the cost of care. That extra cost must sometimes be paid for by cutting the total amount of care received. As many local authorities increase those charges, too many people are finding it impossible to afford all the personal help that they need.

Although it is true that there has been some additional expenditure on carers, the concentration on carers is not always to the benefit of the disabled people themselves. If we are to be true to the spirit of the Chronically Sick and Disabled Persons Act, we must redress that imbalance. On 17th April, in winding up the Second Reading of the Child Support, Pensions and Social Security Bill, the noble Baroness, Lady Hollis, described the Bill as,

    "an attack on the poverty of children and pensioners".--[Official Report, 17/4/99; cols. 520-521.]

The poverty of many disabled people is crying out for a similar attack.

19 Apr 2000 : Column 725

Finally, on a more cheerful but equally important note, I return to the subject of my maiden speech: mobility. I welcome the Government's announcement of a review of the Orange--now Blue--Badge scheme introduced by the 1970 Act. It has been a huge help to disabled people who are dependent on cars to escape the confines of their home and who wish to travel. In recent years, as traffic and traffic restraint measures have increased, so, too, has the demand for badges. Many local authorities and some GPs have been lax and over-generous in issuing badges to people. Some badge-holders have been careless in allowing them to be used by others. Enforcement of the rules is at best half-hearted and often non-existent.

I firmly believe that we need legislation to allow the police and traffic wardens to inspect badges. I had not realised that they are not allowed to do so. They can ask someone only to show them the details on the inside of the badge. If the person refuses, they can check whether the sex of the person matches the name on the badge. The Disabled Persons Transport Advisory Committee (DPTAC) made a number of important recommendations to improve the operation of the scheme. I very much hope that Ministers will adopt those so that disabled people in genuine need can remain mobile and move around with freedom.

4.7 p.m.

Lord Ashley of Stoke: My Lords, I thank the noble Lord, Lord Rix, for initiating this debate so splendidly, and I warmly endorse all the proper tributes paid to my noble friend Lord Morris. I had founded the All-Party Disablement Group some time before he won the ballot for his Bill. Together with a wonderful Tory MP, John Astor, we worked with my noble friend Lord Morris on that Bill. We discovered then that disabled people were held almost in contempt. They were pitied and patronised and had no rights whatever. That was a time when we needed legislation and that is precisely what the Bill, which became an Act, did. It provided new rights for disabled people which they had never had before, and it imposed obligations on local authorities. That was the great achievement of my noble friend Lord Morris.

It is great to see the Labour Government carrying on the tradition of helping disabled people. I am sure that many noble Lords will have heard the various announcements made in this House by the noble Baroness, Lady Hollis. I congratulate the Minister for disabled people, Margaret Hodge, on the marvellous work that she is doing for disabled people. Only this morning I was with her for the launch of the Disability Rights Commission. That is a marvellous step forward. Thanks to the Labour Government, the commission will do more in the next three years to transform the lives of disabled people than we have managed to do in 30 years. That kind of tough organisation was needed to enforce the Disability Discrimination Act.

Despite progress made, there is still much to do for disabled people at present. There are two examples that I should like to mention: first, the postcode lottery for personal services; secondly, the means assessment

19 Apr 2000 : Column 726

of personal care. It is interesting that when the postcode lottery in the National Health Service was exposed, the Government said that they would tackle it and resolve it as soon as possible. That is fine; we all admire that kind of stance. There is now a postcode lottery for personal services but the Government do not say, "Right, we will solve this. We will deal with it immediately". They are making some attempts but nothing like the kind of vigorous, almost sustained attack that they are making on the National Health Service. Why do they not do that for personal services? I believe that too few people appreciate how vital are these personal services. I hope that the Labour Government will change their tack and attack the problem of personal services being postcoded with the same kind of vigour that they are using for the National Health Service.

The Gloucester judgment has been mentioned. That allowed local authorities to take resources into account. I interpret that differently. I regard that as an opportunity to plead poverty and to cut or remove the vital services for disabled people. It is all very well to speak about "rights without resources"--in that admirable speech made by the noble Baroness. That was a very good phrase. We have to provide the rights and it is up to government, national and local, to provide the resources. I admit they may be short of resources but I object to selecting disabled peoples' services as the scapegoats, as the very first people and the very first line of attack. If they are short of resources, they should look all across the board and not select disabled people as the first victims. Let them deal with disabled people and then solve the problems in the best way they can. That is the plea I make.

The Government display a curious attitude as regards the Gloucester judgment, especially the Department of Health. In a recent Parliamentary Question that I asked, the Government indicated that they were content that local authorities should take account of their resources when providing those services. The Minister then assured me that local authorities were under a duty to arrange the services. The Government cannot have it both ways. If local authorities take account of their resources, that is absolutely incompatible with a duty to provide the care--utterly incompatible. The Government must make up their mind; are they standing by their original interpretation that resources should be taken into account? If so they should bring forward legislation to change the law. If they adopt the idea that the provision should be made anyhow, that the rights should come first, then they do not accept the law as it stands. One way or the other the Government are wrong. One way or the other they should ensure that disabled people really have those rights.

My final point is on the Independent Living Fund. I cannot understand why the Government should means test the Independent Living Fund. Why do they do that? I find that disabled people working, especially severely disabled people working, are conforming with what the Government want. They have gone from welfare to work. But what do the Government do? They hit them with a means test. It is quite

19 Apr 2000 : Column 727

unreasonable. I believe that the personal care which severely disabled people receive should be given to them as a right and they should not be hit in the way that the Government are hitting them.

I have to leave it there as my time is up. All I would add is that I hope the Government will think again and do what they can for disabled people far more in the future than they have done in the past on those two issues.

4.14 p.m.

Baroness Masham of Ilton: My Lords, I thank my noble friend Lord Rix for having chosen this subject for debate. Thirty years ago I made my maiden speech on what became the Chronically Sick and Disabled Persons Act. I am told it was on this very day 30 years ago. I also celebrate 30 years as a Member of your Lordships' House this year.

When I look back over the years I often compare facilities and services for disabled people with a game of snakes and ladders. There are advances and co-operation, cutbacks and fragmentation, and bad communication, forgetting disabled people exist.

Last night I took my usual route to have supper in the Home Room, through the Royal Gallery, down in the Sovereign's Staircase lift, across Royal Court, avoiding the puddles, and up the ramp. I managed to wriggle under the scaffolding only to find the entrance door locked. A helpful member of staff crossing the courtyard unlocked the door. However, when I came out, the door was locked again. Fortunately, some guests were leaving a reception. Together with a security guard they lifted me down the steps. I told them that when some other work had been undertaken a ramp had been provided. I am sorry to say that this incident is so typical of what happens throughout the country. People do not have a foolproof system of checking accesses, which is covered by Section 4 of the Chronically Sick and Disabled Persons Act 1970.

I was speaking to one of the elderly and distinguished Peers in your Lordships' House yesterday. He told me that he now lives in an Abbeyfield House because he is elderly and infirm. Everything is fine, except that the last meal of the day is at 5 p.m. If someone has been used to having dinner at 8 p.m. this seems early. Could it be that it is at this hour for the convenience of the staff? Is it not time that the wishes of the elderly and disabled people take priority?

I was sorry not to be able to take part in the debate last week on the critical report by the Audit Commission on the provision of disability equipment by the National Health Service. I had an important prior engagement. It has been found that the withdrawal of services, the long delays and the refusal to provide equipment affected carers and other family members as well as the disabled person. I am pleased that the Prime Minister has taken an interest. I hope it will not just be a flash in the pan. For a long time this has been a Cinderella service, with a few people working in miserable conditions, struggling with lack

19 Apr 2000 : Column 728

of funds for developing pleasing prosthetic limbs and equipment. The noble Baroness, Lady Lockwood, who has to use an artificial foot, told me that the feet used for women, such as herself, are modelled on men's feet and filed down to fit into a woman's shoe. Another friend who uses callipers had to have boots made specially to support her ankles. She waited for months and when they arrived there were two boots for the same foot. Surely we can do better than that. With so many young people having lost limbs due to contracting meningococcal disease, it is important that prosthetic limbs fit well, are comfortable and are cosmetically attractive. There needs to be a national service framework for disablement services throughout the country so that disabled people have a first-class service.

In the past 30 years, the new disaster of HIV/AIDS has hit the world. Patients with AIDS became empowerers. Patients and doctors worked closely together. They have been able to achieve new triple drug treatments and have led the way in better group services and being able to express their needs. We should all work together to prevent all forms of conditions which cause severe disability. Research and better services for all with severe disabilities are needed.

Without good reliable help in the home, there will be disasters. During the past 30 years, there have been many tragedies. One young man who broke his neck in a rugby scrum told me, when he was getting older and his mother became very disabled with arthritis, that he could never go into a residential home. Some time later, he was found drowned in the lily pond in his garden.

Another tetraplegic who had sustained his injury in the Army was recently involved in a car accident with his wife. Not being able to stay longer in hospital and his wife not being able to cope at home, he had to have a residential place until his wife was better. He became depressed and, with the bandage from his arm, somehow managed to hang himself. There is a desperate need for more sensitive understanding of the needs of such people who are a great loss to those who know them.

I conclude on a note of hope. Last week, I attended a parliamentary launch of the Parkinson's Disease Society for specialist nurses. It was heartening to witness three Members of Parliament--one Labour, one Conservative and a Liberal Democrat--all speaking out for better services and understanding. It was good to see three enthusiastic MPs united in a cause.

I hope that the voices of disabled people and their supporters will be heard and that the Audit Commission will continue to produce reports which bring forward a better quality and standard of life for all disabled people.

4.22 p.m.

Baroness Pitkeathley: My Lords, as the noble Baroness, Lady Barker, reminded us, in a previous life, the noble Lord, Lord Rix, was noted for the magnificence of his timing. I am glad to see that he has

19 Apr 2000 : Column 729

lost none of his touch by enabling us to debate this issue, not only because it is important but also because this is the day on which the Disability Rights Commission is launched.

Looking down the list of speakers today, I am aware that by the standards exemplified by your Lordships' House, I am something of a new kid on the block in these matters. I want to pay sincere tribute to all noble Lords and in particular to the noble Lord, Lord Morris of Manchester, not only for the part that he played in relation to the 1970 Act but also for the other legislation and initiatives which he has spearheaded. I pay tribute also to other noble Lords and Baronesses who are speaking today who have such a fine record. In particular, I wish to mention Lady Seear. Sadly, she is no longer with us but she made a seminal contribution to the development of community care, particularly in relation to carers.

I came into this field only in 1986, when I joined the carers movement. That was just in time to participate in the ultimately successful campaign to extend the invalid care allowance to married women. Also, I was an adviser to Sir Roy Griffiths, as he developed his report on community care, Agenda for Action.

I remind noble Lords of a definition that Kathleen Jones gave of community care in 1972. She said:

    "To the politician, community care is a useful piece of rhetoric; to the sociologist, it is a stick to beat institutional care with; to the civil servant, it is a cheap alternative to institutional care which can be passed to the local authorities for action, or inaction; to the visionary, it is a dream of a new society in which people really do care; to social services departments, it is a nightmare of heightened public expectations and inadequate resources to meet them. We are only just beginning to find out what it means to the old and the chronic sick".

We might still agree with some of the observations made in that quotation, but we have made progress. There are areas in which improvements have been made and we should celebrate that.

In my judgment, the most significant change is the emphasis now placed on users and carers. I believe that that is the biggest change in 30 years. That is a major contribution and will continue to influence future developments.

When Sir Roy Griffiths said in 1988 that,

    "the starting point has to be to identify and respond reasonably and appropriately to the needs of individuals in their particular circumstances",

he was not setting out a truth which was universally acknowledged at the time. The word "user" was unknown and the word "carer" even more so. I have vivid memories of going to conferences where the most unlikely people turned up to hear me speak because the word "carer" had been mis-spelt as "career" and people came to hear me talk about training and professional development, and not the 6 million carers who at that time were completely unrecognised.

When I was a young social worker in the 1960s, people who came to us for help were called "applicants". Some people who worked there had administered the Poor Law and remembered when they were called "supplicants". Then they became "clients", then "recipients", then disabled people and

19 Apr 2000 : Column 730

their carers and eventually became users and carers. But applicants do not become users or carers or customers just by changing their name. It is necessary to change the systems with which they come into contact and above all, the attitudes of the professionals with whom they deal.

I believe that we have made progress with those changes in 30 years and that the policies and legislation which have followed are both the result of those changes in attitudes and also have lead them.

The milestones along the way are well known. I have a particular interest in the Carers (Recognition and Services) Act 1995 and in the national carers strategy launched by the Prime Minister last year. The Carers and Disabled Children Bill will shortly come to your Lordships' House and will give us more opportunities for debate.

What the carers movement and all those associated with it in the past 30 years have done--and I believe it is a record to be proud of--is to turn a private trouble into a public issue. There have been radical changes in community care and the way it is delivered not only in organisational and financial terms but also in terms of professional thinking.

It is one thing to say that users and carers should be at the centre of decision-making but it is another to implement that because that requires a change in the attitude of professionals in relation to sharing; allowing people to make choices that others may not think are appropriate; it is also about risk-taking; and about managing conflict. It is also about developing the confidence of users and carers so that they have enough self-esteem to participate in the consultation processes that are now sometimes offered in a way which is not tokenistic and which result in changes in practice.

It requires too that professionals are prepared to address the imbalance of power which exists in that relationship; to divest themselves of stereotyped images; and perhaps to ask some very difficult questions that we as society must also address. For example, do adult children always have a responsibility to look after their parents and do children have a right to inherit their parents' resources and so on?

The carers movement has an admirable history of pushing us all to address those issues and to look at the rights and needs of carers, recognising them as prime providers of community care but never looking at their needs in conflict with those of the disabled person even though they are inexplicably entwined with them.

I believe that power of the users and carers movement is one of the most important lessons that we have learnt in 30 years. But something else which we have learnt and of which we must take heed is how quickly policy matters change in that area. One example is that the Griffiths review of community care in 1988 made no mention whatever of GP fundholding because it was not even a gleam in anyone's eye in those days. By 1993, it had been introduced and had

19 Apr 2000 : Column 731

had a major effect. By 1998, it was gone. So we must remember how quickly circumstances change in that area.

The Care Standards Bill currently passing through another place, the Royal Commission and the Government's response to it--I might even say lack of response to it thus far--and the repercussions of the Gloucester judgment are other matters that we must consider.

In planning for future community care, I plead that we think always of three particular issues. The first is that community care is not and will never be a cheap option. Good quality community care is expensive to provide and resources must be made available to provide it. Secondly, successful community care depends on co-operation and partnership between all the agencies involved: health, social services, the voluntary sector and families, each recognising the value of the contribution made by the others. Thirdly, and lastly, but certainly not least, it is predicated on the unpaid care of families and communities, given willingly and with an amount of love and duty which offers a shining example to any society.

4.29 p.m.

Baroness Gardner of Parkes: My Lords, I thank the noble Lord, Lord Rix, for the debate today. It is one further addition to the excellent work he has carried out so often on the same subject in this House. We all welcome the opportunity to discuss the matter.

I was a dentist in general practice when the Act was introduced. My only awareness of disabled people was in terms of patients who came for treatment. I found that they were a remarkably independent group. Often, they had their own ways of getting in and out of the chair or from the waiting room to the surgery and they could manage better without one trying to help. Interference was not always the most useful policy. I remember in particular one woman who was blind and wore a heavy calliper on her leg. She managed her life so well and was such a marvellously happy person.

We tend to believe that anyone disabled might not necessarily be such a happy and forward-looking person. That has not been my experience. I have found that such people often have a remarkably strong will and a great, good spirit that keeps them going. Sadly, there are a few, as the noble Baroness, Lady Masham, mentioned, for whom things go wrong. That is not so good.

At the time of the Act, I was also a young councillor. We were absolutely staggered when it landed on our doorstep. We were terrified about the cost. The noble Lord, Lord Morris, was absolutely right in saying that no one knew how many disabled people there were. We were told that we must carry out a survey to discover the number. This was in about 1973. We had had the oil crisis and everyone was worried about his financial situation. No one knew how much the survey would cost. We decided that if we found a huge number of people requiring help, we could not possibly deal with the situation. Eventually, the

19 Apr 2000 : Column 732

council decided to carry out a 10 per cent survey immediately from which it could work out needs and thus develop provision. But even the 10 per cent survey was a major exercise.

At that time disabled people seemed almost to conceal the fact that they were disabled. Noble Lords have described how no one wanted to be pitied and no one wanted to feel embarrassed by asking for something from others. Fortunately, over time we have seen a complete change in that attitude. My recent experience of self-assessment of disabled people--which I have quoted in your Lordships' House before--worries me in terms of the National Health Service. If one applies to be considered for a board, one may tick that one is disabled and one will be granted an interview.

I interviewed one such person. We had actually interviewed several, but we had to reconvene because one whom we had omitted, believing him to be totally unsuitable, demanded to be seen and there was an obligation to see him. When he came in he looked fit. We said, "What's your disability?" and he replied, "I suffer from asthma." One of the interviewing panel was a doctor. He said, "But you seem to be in very good health." The patient replied, "Oh yes, it is just for a couple of days in the summer." That did not seem to justify his right to tick the box by which he was guaranteed an interview. That kind of fiddle, or whatever it was, does not help those who are genuinely disabled. But it is a rarity and it is not something we need to discuss too much.

The terminology has changed too. People used to be called "registered disabled". I remember when there were two Bills going through your Lordships' House; one abolishing the term "registered disabled" and the other containing a whole lot of clauses to cover the registered disabled. In the debate I asked the Minister why we were putting into one Bill what we were abolishing in the other. The matter was discovered and put right.

Access to buildings--which we all believe is essential--is still not 100 per cent, even in new buildings. Buildings are still going up which do not have access. Nowhere is really much worse--unless it has improved miraculously recently without my knowledge--than Heathrow airport. When I have arrived at Heathrow and the escalators have been out of order, I have asked people, "How do you get down?" and they have replied, "You've got to walk down." A non-working escalator is of course much worse than one which is working. The gradient on the escalator is not really suitable for walking. I said, "What about a disabled person? How would they get down?" They replied, "Oh, we have no way they can get down." In the newer terminals, improvements have been made. But the difference between that and the new Waterloo station where there is splendid wheelchair access shows how progress is being made in terms of improvements.

I have almost run out of time, but I must comment on the comments of the noble Lord, Lord Ashley. I am sorry that he is not here to hear me. He congratulated

19 Apr 2000 : Column 733

the Labour Government on everything they had done. I cannot let him get away with that, because, after all, the Act about which we are talking went through under a Conservative government. We have just been told how they allowed it to come back again. It was stated earlier that it started under the Labour government, then came the election of the Heath government and it was carried on by the Conservative government. I see noble Lords looking at me and wondering--

Next Section Back to Table of Contents Lords Hansard Home Page