§ 5.20 p.m.
§ Lord Rix rose to ask Her Majesty's Government whether community care assessments of people with learning disabilities are, as intended, influencing decisions about existing services and planning for future services.
§ The noble Lord said: My Lords, it is a great pleasure, immediately after the Recess, to look at the first six months of the new community care arrangements for people with learning disabilities. Let me say at the outset that "learning disability" here means what "mental handicap" meant when I first entered your Lordships' House but a fairly short time ago. I am grateful to those of your Lordships, from all parts of the House, who have come to speak, including the noble Lord, Lord Rodney, who will be firing his sighting shot immediately after me. No doubt the broadsides will follow in due course. I am also delighted that we welcome back the noble Lord, Lord Ashley of Stoke, after his successful surgery.
§ Lord Rix
My Lords, I hope that I am not guilty of the sin of pride when I say how pleased I am that he has chosen to speak on this his first day back for months, but then, the subject is disability, and we all know the noble Lord's proud record in that respect.
Your Lordships too have a proud record, evinced yet again by the numbers involved today. Since there are so many of your Lordships speaking, I can be brief, and I shall resist the temptation to raise issues which others are likely to raise. I am also grateful to the Minister for the interest that she has shown. I hope that she will have some good cheer for us at the end.
In preparing for this afternoon, I was able to draw upon the expertise of my colleagues in MENCAP, including a member of the Secretary of State's User and Carer Group, and upon the personal experience of parents and their sons and daughters. Further, MENCAP staff have pored over community care plans, NHS trust applications, and assessment procedures. Unlike some, I am able and willing to reveal my sources, and their probity is undeniable.
My Question is about whether we are really moving towards a system in which individual needs, honestly appraised, determine what support people receive now, and what plans are made for developing services. Others will, I believe, be raising issues about people with multiple disabilities, community attitudes, the role of the NHS, early intervention, innovative schemes, housing, day services, respite care, nursing, funding and the position of local authorities. My short answer to my own question is that we live in hope, but do not yet see a great deal of evidence to justify that hope. For most people in most places, not a lot has actually changed, and there is apprehension about what successful implementation of the changes might mean.
46 The Government did not invent community care. Most people with severe learning disabilities already live in the community; and throughout history most people with a severe learning disability have lived in the community. We can as confidently say that most people have always eaten food, which does not mean that most people have always, eaten well! The community for the majority, like the institutions for the minority, has often given a pretty lousy deal to people with severe learning disabilities, and to their families.
What the Government have done is to embark with great determination on changing how things are done, in the belief that somewhere down the road that will also change what is done. Those changes include the closure of the remaining mental handicap hospitals; a switch from the NHS to social services and from social security to social services; and a division of both health and social services between those who assess arid plan and purchase and monitor, and those who provide and sell. The familiar GP has been transformed into a new purchaser/provider hybrid, with funds in the practice safe and an information leaflet on the table beside last month's magazines. The relatively obscure processes of planning and deciding priorities have become fairly formal and public processes. Many of the people who provided the services have now moved or have new titles and new job descriptions.
It is not really surprising that those who have suppressed the cynicism which says that nothing will change are apprehensive about the quite strong possibility of everything changing. Their anxiety is to keep what is good while replacing what is bad with something better. The closure of the mental handicap hospitals is overdue; but those hospitals have been homes to some people for a lifetime, and have provided respite care and back-up for others. The professional skills of the NHS in hospital, and community homes, and in the community, are not seen as outmoded by those who depend upon them. Social security has given the beneficiaries some purchasing muscle of their own. The GP has often been seen as "on our side" against the system. The social worker has been seen as. an ally, if not always a very powerful one.
As regards the system, nobody objects on principle to plans and assessments; but plans which prioritise me out of existence, and assessments which decide that I do not need services that I have depended upon for the past 30 years, could hardly be seen as anything other than threatening. People are living under the shadow of that threat.
We now know, thanks to a legal judgment, that local authority complaints panels have teeth and cannot be lightly disregarded by the local authority. But people who feel that the system itself is stacked against them, may well be unsure what to complain about, or to whom they should complain, for they are no longer clear who is in charge. Local councillors tell them that central government pay the piper and call the tune. Their local authority itself may or may not exist the far side of local government reorganisation. Having just become used to new family health services authorities and to newly revamped health authorities, they find districts amalgamating, the family authorities joining with them, 47 and the new creation becoming more distant as it becomes bigger. And from where will strategic planning for learning disability services come if regional health authorities, as predicted, do not survive? Indeed, is central government in Leeds where the NHS headquarters are sited or in London where the Department of Health is sited?
But if service users are apprehensive about success, so, it seems, though in a different way, are government. The word has gone out not to be too frank in feeding back to people what their assessment says about their needs. Neither area plans nor personal plans are to be allowed to raise "unrealistic" expectations. The All-Wales Strategy on Learning Disability, which did try to plan on the basis of need and put in resources to match, and which most people in and out of the Principality regarded as at least on the way to success, and a valuable precedent for other parts of the United Kingdom, seems to have dropped off the agenda. Social security benefits, which were seen at the time as among the outstanding achievements of the Conservative and Labour Administrations which introduced them, are now in question because they are helping a lot of people and, therefore, cost a lot of money.
I am realistic enough not to press this afternoon for a large addition to the resources available to families and individuals whose private debts are being increased by lack, and in some cases loss of services, and by charges for what there is, for I realise that that latter point alone could occupy your Lordships for the rest of this Unstarred Question, but I have some modest specifics to suggest.
First, I invite the Minister to seek help in providing the general public with a learning disability booklet to match the excellent booklet on mental health. Secondly, I invite her tangible support for MENCAP's own large investment in a rewrite of the unique and uniquely successful Open University course on learning disability that caters for all the partners in community care, including people with learning disabilities themselves.
Thirdly, there are innovative local schemes at very modest cost, both in the voluntary and the public sectors, and we would be glad to co-operate in a project to publicise such schemes. Fourthly, we have helped to publicise a rational system of housing needs assessment, and we hope that the Government will work with us on getting that adopted. Finally, since, in our field, domiciliary alternatives to residential care mean keeping people in their parents' homes, not keeping them in their own homes, we hope that it will, at least, be made quite clear that parental resources and attendance allowance care components are not to be taken into account in assessing charges for community care services, or in assessing entitlement to help with the costs of the aids and adaptations which enable people to live at home.
I look forward to hearing what your Lordships have to say and to the Minister's response. My Question was whether we will help people to live dignified and full lives by designing services for people rather than trying to cut people down to fit the services. In earlier days I wore a costume that was too large and shoes that were 48 too tight, and I slept in a bed which was designed for penitents of diminutive stature. I cannot recommend the experience.
§ 5.30 p.m.
§ Lord Rodney
My Lords, I am very grateful to the noble Lord, Lord Rix, for allowing me to break my duck and to speak in the important debate under his name on the Order Paper. Perhaps noble Lords present will be kind enough to allow me time to say that the first anniversary of my father's death is in two days' time. I should like to honour his memory by recalling the love, kindness and steadfastness that he showed to his family and to those that knew him well both inside and outside this place. He was held in real and deep affection during what still seems to me too short a life. He, of course, would have been a deal more pragmatic on the subject.
I first encountered people with learning disabilities in 1971 when for eight months I was employed by Westminster City Council as a student aide. I remember driving a young boy with Down's syndrome to a holiday home in Kent. He had never been to the country before and his interest and amazement in all the things that he was seeing for the first time was heart warming; although trying to explain why a cow was a cow really had me thinking. We duly arrived and I was worried that fitting into a new group would be beyond his capabilities. I introduced him to the headmistress and waited to sign the obligatory forms. To my amazement, while I shuffled round the notice boards like a first termer—which is much like I feel today—I glanced out the window and there he was playing football and laughing with a number of boys his own age. There were no problems at all. I learnt that if you give someone an even break they usually make the most of it.
I also unfortunately saw the prejudices and misunderstandings which arose when someone who looked different from the rest of us was the subject of public gaze, cold stares or pointing fingers. Small children still point but hopefully in a spirit of inquiry.
I am sure that all noble Lords taking part today are well aware of the difference between a learning disability and mental illness. I needed to be reminded. A proportion of people with severe learning disabilities also suffer from mental illness; the majority do not. Distinctions, unfortunate as they sometimes are, have to be drawn for the sake of greater clarity. I am certain that MENCAP's new image and manifesto, which was put out last year, will go a long way to achieving this. No more excuses for not knowing or needing reminders. I was particularly struck by the statement of intent made by its chief executive, Fred Heddell. It was:to make sure that everyone in Britain is aware of people with a learning disability, their potential and their needs".There is not much equivocation about that.
I should now like to concentrate on two areas, the first being housing. Of the 160,000 adults with severe learning disability, 20,000 live in large hospitals, 40,000 in residential homes and the remainder, some 100,000, live at home with their families. The larger institutions may still have a useful function for some people, perhaps even people with severe or profound disability. I do not know whether studies have shown that these 49 institutions are, as is generally accepted, more cost effective. Some evidence seems to suggest that a reduction in controlling drugs, the range of aids against challenging behaviour, plus the inevitable wastage of an institution would go a long way to reversing this assumption. If hard evidence could be gathered from around the country supporting this premise the "needs led" attitude could prevail. That is quality care at a discount.
For the present, and while the benefits of the National Health Service and Community Care Act 1990 begin to make themselves felt, perhaps more frequent use of the idea of building smaller units within an existing institution or building on sites within the grounds would be a useful interim stage. These smaller units could then be used as assessment homes leading to a move away from the institution if that was deemed beneficial to the individual and provided that adequate services were available in the community.
As regards those already living outside of the institutions, who are by far the largest proportion of those with learning disabilities, the creation of institutional housing is not an answer. People with learning difficulties would like to live like the rest of us. They are only too aware of the freedoms and constraints of their own particular disability and of our differing attitudes towards them. Services which encourage independence and offer choice with dignity will be needed throughout their lives. The National Health Service and Community Care Act 1990 not only encourages but places a duty on local authorities, requiring them to take much more notice of the expressed needs of the user. That is to be applauded and reinforces what good practice is all about.
The second area I should like to touch upon is that of advocacy. If community care is to work it is of paramount importance that the user's needs are clearly represented and understood. It should be obvious to all that those with learning disabilities, who are often not adept at speaking for themselves, are at a serious disadvantage at the point of assessment. I respectfully ask the Minister to look again at the right to individual representation as stated in the Disabled Persons (Services, Consultation and Representation) Act 1986 if lack of a formal personal advocate in community care assessments proves itself to be disadvantageous to a user's real needs.
This debate is about the future of people of all ages who, through absolutely no fault of their own, find themselves disabled. They should have no need to come to us cap in hand, as one young man succinctly pointed out. We should and will be there to help them with their choices when and if they ask for it.
§ 5.36 p.m.
Lord Bruce of Donington
My Lords, those of us who were privileged to know the father of the noble Lord, Lord Rodney, and the constructive work in which he participated from time to time in your Lordships' House will not be surprised that his son has also chosen to participate in the performance of his public duties. We welcome the maiden speech that the noble Lord made today. Its whole tenor springs in part from his 50 personal experience in the area of London with which I used to be familiar; in Paddington, which is now in the City of Westminster. Clearly, his experience as a servant of the Westminster City Council has led to his participation in today's debate. It is all the more significant for that.
We welcome the fact that he comes to this House at a comparatively young age compared with most of us who remain active in the service of your Lordships' House. His future contributions to our proceedings will therefore be noted with great interest. I venture to suggest that I speak for the whole House in congratulating the noble Lord in his first attempt—and a very fine one, indeed—to address your Lordship's House.
Lord Bruce of Donington
My Lords, the House will also be indebted to the noble Lord, Lord Rix. His contributions outside this House as regards those who suffer mental handicaps are well known to most of your Lordships. It was most thoughtful of him, and the House will wish to thank him for having drawn our attention to this important Question.
I am no expert on the subject of this debate and your Lordships will be relieved to hear that l intend to speak briefly. I shall address only the principles that are likely to be involved. They affect us as ordinary human beings and as those who have the additional responsibility of being part of the institutions of Parliament.
Over the past few years there has been a tendency to dismiss society as a non-existent factor. Happily, that is now becoming rather more relaxed. Once again, there is a tendency to put forward the proposal that society as a whole, acting as society as a whole, as it does through the state and local authorities, has a constructive role to play in social fields.
It is not always a question of value for money. The services provided for the public by organisations such as MENCAP and many others cannot be assessed in terms of value for money. They can be assessed only in the light of observations as to the effect of individual effort on the people concerned, whether the assistance is provided at the instance of private organisations, local authorities or government.
It is extremely difficult for people who are mentally handicapped, either through brain damage or for some other reason, from an early age. Children can be extremely cruel to one another. In the earlier years unintentional cruelties, which would not be perpetrated in later years, are very often inflicted on those who suffer from mental disability. Therefore, the mentally handicapped start at a considerable disadvantage in terms of experiencing the normal bouts of happiness and carefreeness that are, or should be, associated with our younger days. Nor do people always realise the enormous pressures facing those families on whom the prime responsibility falls to look after, raise, encourage and improve the lives of members of the family who are mentally handicapped. This covers the entire income spectrum. No one would wish to minimise the unhappiness and inconvenience that can be caused to a wealthy well-to-do family nor indeed, the extra personal 51 effort required when a member of that family is mentally handicapped. No one would suggest that in well off families special care and attention should be withheld. But for the poorer families of our country—the one-third living in conditions which do not fulfil what are assumed to be proper living standards—the problem of caring for a mentally handicapped child or adult while living in conditions of poverty mean that those moments of happiness and serenity which are surely the aim, and many may think the right, of all human individuals, are very difficult to achieve. As MENCAP and other organisations have shown, many people go through life to an advanced age carrying the responsibility of looking after, and encouraging, someone, a member of their family, with mental disability. Those people are denied the serenity that normal individuals with comparatively healthy families take as a matter of right.
The question arises in those circumstances as to how far the state, either as the state or through local authorities, should come to the aid of the individual. I mention that because of a remarkable assertion by Mr. Portillo, a member of the Government, who said in the course of a meeting last Thursday:You cannot increase the role of the state without diminishing the scope of the individual".In all my experience of Parliament, I have never heard such complete nonsense and such a complete travesty of what is truly the position. I am not for a moment saying that the noble Baroness, Lady Cumberlege, for whom I have the utmost regard, has any illusions or would endorse those views. But they exist and are authoritative in government circles.
In circumstances of mental disability, two kinds of assessment become necessary. The first is the degree to which an assessment can be made of the real extent of the disability, its intensity, its peripherals and how it can best be dealt with. An accurate assessment is necessary in order that curative or at any rate ameliorative treatment and conduct can be adopted by those in charge. That is an extremely costly process. We must make sure—and it should be the duty of the state to make quite sure—that accurate means of assessment are available, sometimes through associations like MENCAP but otherwise by local authorities in order that the parameters can be established, bearing in mind that, on the latest estimate, there are some 30,000 children and 160,000 adults who are technically mentally disabled.
The other need to be determined is the finance required by local authorities in order to obtain skilled assistance and to make available, in association with outside organisations, sufficient manpower or woman-power to be able to undertake the necessary functions. At present the Government prepare standard spending assessments of the requirements of local authorities. I fear that they are not always accurate. It is to be hoped that when the Government consider that question, as I am sure they must, they will not be niggardly in their response to the real needs of local authorities. Whether or not there is ring fencing is entirely immaterial for that purpose.
52 When the noble Baroness replies, I hope she will not confine herself to the amount of money spent in the past and to be spent this year and over the following years. We require rather more than that. I suggest that the temperament of the noble Baroness adapts itself well to conveying to the House the genuine human regard which the Government have with respect to mentally disabled individuals.
§ 5.49 p.m.
§ Lord Redesdale
My Lords, I join other speakers in thanking the noble Lord, Lord Rix, for initiating the debate. I should also like to congratulate the noble Lord, Lord Rodney, on his well-researched maiden speech and to welcome him as a younger Member of the House. I do so especially because I feel that he has now swelled the numbers from which I can recruit for the parliamentary rugby team. Many of the members are here after our unsuccessful tour to South Africa.
As the subject matter of the debate covers such a large area, I must apologise for the fact that I shall speak briefly on one particular area of which I have personal knowledge; namely, respite care. Respite care, or short-term care, is a subject which I believe is very largely overlooked. Although on a number of occasions in documents that have been put forward the need for respite care is classed as a priority, it is the easiest to cut and it always seems to be the first to be cut under any local authority policy.
As the noble Lord, Lord Rodney, pointed out, there are 100,000 people in this country with learning disabilities. That means that the number of people affected by such learning disabilities is very large indeed. I say that because for every person who is living with his family in the community—which is a very good thing—a large number of people are also affected because they are caring for that person with learning disabilities. Indeed, everyone in the family is affected when one member has learning disabilities. The pressures and the strains created can be quite enormous.
Respite care is actually very under-utilised. The figure that I have been given shows that only 20 per cent. of children and adults actually use the service. After dealing in respite care myself, it seems to me that many people believe that it means, in a way, giving up the responsibility for the people for whom they are caring rather than an immediate break—that is, a chance actually to recharge one's batteries and the opportunity to have a break from the close and sometimes destructive situation caused by the long-term nature of caring. Because respite care is difficult to get and considered something of a luxury, it is seen by many people as almost an emergency service only to be used when things break down and the carer has to go into hospital. The situation is, perhaps, not as it should be.
One of the big problems with respite care is that it is a very costly enterprise. For technical reasons, looking after someone who is severely disabled is very labour intensive. Behind every person with a severe disability, there are at least two or three carers who may need to use respite care.
My experience of respite care was gained while I ran a number of mentally-handicapped groups, as they were 53 then called. The first one I ran, Pendower Junior Gateway Club, took place on a Friday night. We went around Newcastle picking up everyone and took them to a community hall. The aim was twofold. First, basically it allowed the children and adults a chance to get away from their families if only for two or three hours. Secondly, it gave adults, parents and friends the chance to put up their feet for a two-to-three hour stint. I must admit that I found it hard work because I was in fact the bus driver. After pricking up 12 wheelchairs in a row, delivering them and then doing the same about an hour and a half later, I usually found that my back was put out by the end of the day.
The experience really brought home to me one of the big problems which many carers face; namely, that there is a great deal of lifting and carrying involved in helping people with severe disabilities. Many carers, especially among families, are much more elderly than one would expect. I know that in a few of our groups, some members of the club were in their thirties while their parents were sometimes in their sixties or seventies. To try to shift someone around who may weigh 12 or 13 stone, together with a wheelchair, can be very taxing on someone who might be approaching the age of 70.
I know that to ask the Minister suddenly to throw a great deal of money at respite care would be a waste of time. Respite care is one of a long list of priorities. Indeed, it is only one of many necessities upon which local authorities have to spend their budget. However, I should like to point out that respite care is not a luxury. It is not something that is being given; it is not a holiday period in a foreign place where one can rest in the sun. It is a very necessary and important period away from such responsibility.
Before I conclude, I should like to draw attention to one concern that I believe the Minister could rectify. I have in mind one voluntary group which provides much respite care in clues throughout the country. I refer to the student community action groups—the SCAs of the universities and polytechnics. I know that SCAN (Student Community Action Newcastle) which I ran, had at least 80 students who were regularly involved during the student year in respite care groups. I was very disappointed and quite alarmed when I noticed that, under the new proposals of reorganisation for student unions, the student community action groups were left out of the core funding. It would be a great loss to voluntary groups which rely quite heavily on student volunteers if that was to be the case.
§ 5.57 p.m.
§ Lord Allen of Abbeydale
My Lords, we should all be grateful to my noble friend Lord Rix for tabling the Unstarred Question this evening. As some noble Lords may be aware, my noble friend succeeded me as chairman of MENCAP. When I saw that my own predecessor as chairman and president of that organisation, the noble Lord, Lord Renton, had also put down his name to speak, I wondered whether MENCAP's contribution might, as it were, be a little out of proportion. However, in the event, the unusually long list of names of speakers for an Unstarred Question 54 removed my doubts and demonstrated how important those underlying issues are, cutting as they do across party lines.
Thinking about the Question caused me to look back at the debates on what is now the National Health Service and Community Care Act 1990. 1 should like to touch briefly on three changes which we then suggested and which have some direct relevance to the matters under discussion this evening. I made two attempts to bring into force Sections 1 and 2 of the Disabled Persons (Services, Consultation and Representation) Act 1986 at the same time as what is now Section 47 of the 1990 Act dealing with assessment. Those two sections of the 1986 Act relate to the appointment and rights of authorised representatives of disabled persons.
My noble friend Lord Henderson of Brompton made a similar attempt to bring in Section 3 of the 1986 Act dealing with the procedure of assessment—a section for which there is actually a saving in Section 47 of the 1990 Act. We were fobbed off and, to this day, those sections have never been brought into force. I know that they were in a Bill originally introduced by a private Member, but they are in an Act of Parliament. I cannot help thinking that it would make quite an interesting study to work out the scale upon which the executive thwarts the decisions of the legislature simply by leaving provisions unused on the statute book. I must confess that when I was a civil servant I never quite took in the full potentialities of this simple device.
However, to go back to the 1990 Act, I had another amendment designed to give a specific right of initiative in asking the local authority to carry out an assessment. It was agreed on all sides that assessment was the gateway to community care, but I argued that the Bill was lacking in clarity as to the precise route to that gateway. The amendment was not accepted and the obscurity, which to my mind still remains in the Act, has had to be clarified by guidance which. alas, has not commanded universal approbation.
Then, I successfully moved an amendment that the money for community care should be ring-fenced. That is perhaps more important than the noble Lord, Lord Bruce of Donington, was prepared to admit. The Government would not have it, but in the bargaining that followed they agreed that in addition to the special grant for the mentally ill, there should be a similar grant for those dependent on drugs or alcohol. I put in a plea for the mentally handicapped but that plea was not accepted.
I suppose the most remarkable thing about the 1990 Act was the belated decision that those responsibilities should be put onto local authorities. This was at a time when the Government seemed to be set on destroying local government as we have long known it. That is a procedure on which, as far as I can see, they are still engaged in relation to education and the police. The Government came to that decision about community care when the authorities were still wrestling with the new order of things created by the Children Act.
I can well remember, though, the horror with which we heard a rather embarrassed Minister telling us, a week or two after Royal Assent had been given to the 1990 Act, that despite various assurances that had been 55 given there would now be a three-year wait before the Act came fully into operation. I do not think anyone troubled much at the time to disguise the fact that a prime reason was the fear of adding to the poll tax which was already in deep trouble. But, looking back, it is doubtful if local authorities could have coped with immediate implementation. As it was they did not know for some time how much money there would be, and when they did know, it was not enough. It never is. The present omens, both for local authorities and for ensuring a sound financial base for a thriving and innovative voluntary sector, are not especially propitious.
I am well aware that there has been progress, as I am sure the Minister will not be reluctant to explain. For one thing, a year ago the Secretary of State announced a ring-fenced temporary special transitional grant using words which make distinctly odd reading of some of the ministerial arguments used when we were discussing ring-fencing as regards the 1990 Act. However, I should add that this grant forms part of financial arrangements which would have earned a warm nod of approval from those practitioners of labyrinthine complexity who flourished in the Byzantine empire. I have also read the Government's response, which slipped out rather quietly the other day, to the report from the House of Commons Health Committee on community care. I find that document falls a little short of the highest standards of crisp, crystal-clear clarity.
In making my modest addition to the list of questions to be put to the Minister—I appreciate that she may not be able to deal with them all tonight and may prefer to respond in writing to some of them—I begin by asking whether the Government are resolutely opposed to a long-term ring-fenced community care core budget. It still seems to me such a sensible way to proceed.
Further, I thought it disappointing that although a great many words were used in response to the House of Commons committee's recommendation for a community care charter, Ministers simply could not bring themselves to say "yes". I am still puzzled to know why. In the Minister's view is the guidance which has evidently been given to the effect that social services departments need to provide assessments only when they can then provide a relevant service—I hope that I have got that right—consistent with the legislation? Is she satisfied that for those with learning disabilities there is as yet adequate co-operation between social services departments, the health service and those responsible for special educational, transport and housing needs? I know that the NCVO is particularly uneasy about this because of the reports it is receiving. Is the Minister satisfied that in the absence of specific statutory provision there is reason to suppose that all those who need assessment, even within the guidelines, are somehow being picked up?
I have only two more questions. If the Government are to proceed with their review of the regulation of nursing and residential homes, will they please consult fully with all the interests and not just with providers? There again the NCVO is most concerned about that matter.
56 Finally, is the Minister satisfied that, in the absence of any provision for representatives of people who may not be able properly to speak for themselves—I pick up a point made by the noble Lord, Lord Rodney, in his notable maiden speech—the assessment procedure ascertains the individual's real needs and the best way of satisfying them within the available resources?
No one underrates the problems, but there are legitimate causes for anxiety even after the comparatively short experience of the new arrangements. The Minister's response, whether that given this evening or at a later date—and I know that she has gone to a great deal of trouble over this matter—will be received with great interest and studied with great care.
§ 6.8 p.m.
Lord Campbell of Croy
My Lords, I also wish to thank the noble Lord, Lord Rix, for raising this subject and introducing this debate. The expression "learning disabilities" is now being adopted as a more felicitous one for mental handicap. Besides being chairman of MENCAP, the noble Lord, Lord Rix, was, in the Year of the Disabled, an energetic and successful executive of that organisation. I presume that the title MENCAP is being retained as the general public will not have caught up with the special meaning of the new wording.
There are, of course, other learning handicaps such as dyslexia and deafness. I am vice-president of the Royal National Institute for the Deaf. I am glad that the noble Lord, Lord Ashley, is to follow me in this debate. I understand from the newspapers that he may be able to hear some sounds coming from me now but that I may sound like a croaking Dalek with laryngitis. I congratulate the noble Lord on the outcome of his treatment. Over 25 years ago in another place he could hear me clearly before the onset of the illness which resulted in his deafness. We were both then engaged on subjects that affected disabled people.
The noble Lord, Lord Rix, suggested that I should contribute to this debate on the subject of mental illness because most other noble Lords would speak about mental handicap. I am glad to do so. It is a distinctly different disability, requiring different treatment.
Unfortunately both mental handicap and mental illness are found together in a number of cases. Care and treatment of those cases are especially difficult to arrange. I draw the Government's attention to those cases and suggest urgent examination as to whether they are being catered for adequately.
The Department of Health is, of course, the lead department with its Ministers but it has no functions in Scotland, where the Scottish Office Home and Health Department is the equivalent and has been for many years. The Secretary of State for Scotland is responsible for health and the National Health Service in Scotland, as I have good reason to know. Therefore, I trust that the Minister replying will ensure that the record of this debate is seen by other health departments in the United Kingdom, although I do not expect her to reply tonight to the points which I raise. Naturally I am familiar with the scene in Scotland, where I am involved with various organisations for the disabled, including the National Schizophrenia Fellowship, Scotland.
57 Under the community care system, hospitals and wards which have accommodated both mentally ill and mentally handicapped people, are being reduced. The intention is that those who can be cared for in the community will be transferred to new arrangements. That process is happening more quickly in England than in Scotland, but both north and south of the Border there is anxiety about whether places are being properly found in the community before individuals are released.
In principle, the system of community care was generally accepted. It was made possible by advances in medical knowledge and treatment. There was also general agreement in the country, and certainly in Parliament after the Griffiths Report, that the elected local government authorities should assume this additional responsibility. However, there is no question of a complete transfer. This is a change of system and duties. Many people with mental disability were already being cared for in the community.
Most relevant for the mentally ill, enough hospital places must be retained for those who cannot survive outside or where their own safety or the safety of the public is at risk. Enough hospital places need to be kept for those who have relapses or stop taking their medication, which often happens wilfully. I understand that the most recently available figures show that between 80 per cent. and 90 per cent. of admissions to hospitals of mentally ill people were readmissions—over 80 per cent. I am close enough to those who deal with these problems not to be surprised by that figure. It is, however, causing problems.
Where schizophrenics are concerned, relapses have to be expected. An individual may be living in the community for weeks or months and then suddenly have to return to hospital. At present it appears that this has not been fully provided for, although it must be expected.
I come now to the incidence of violence, which has recently been reported quite widely in the press while we have been in recess. This debate is not the place to go into the procedures for detaining or restraining individuals whose mental disability appears to require restrictions because they might be dangerous. Procedures differ north and south of the Border under the Mental Health (Scotland) Act and the equivalent for England and Wales. However, the press informs us that the Government intend to make changes in England following the unfortunate, violent incidents involving schizophrenics which were headline news. No doubt before long we shall have the opportunity to consider the proposals, which I understand involve a community supervision order.
I must emphasise that only a small minority of schizophrenics are violent. The recent incidents created an impression that all schizophrenics may be violent. That can undermine the confidence of the public in the new community care system. That is why assessment and subsequent arrangements are vital. The violent few must be treated in a way which minimises possible danger to the public. In most, if not all, cases it is not difficult to identify them.
There is also the further sad subject of suicide. Most of those who have committed suicide have not been 58 outwardly violent. Rather have they been overcome by depression and despair. Last Friday the National Schizophrenia Fellowship issued figures from its research relating to England only. In 28 months between dates in 1991 and 1993 no fewer than 164 schizophrenics committed suicide.
Schizophrenia is the single mental illness for which the community care system will increasingly have to provide. I remind your Lordships that the illness does not usually appear until the teens, the cause is still not known and a cure has not yet been discovered, though much can be done to alleviate it. Most people now suffering from schizophrenia are living in the community. Many are young, in their late teens or twenties. Their state is highly volatile. They can suddenly experience very bad patches when they need urgent attention or treatment. That is in contrast to mental handicap which usually produces a steady state.
Schizophrenia has been called the forgotten illness. I believe that that is not strictly apt because most of the general public had never heard of it until recently, or if they had they thought that it was a Jekyll and Hyde phenomenon. They had nothing to forget. I believe that it should be called the hidden illness. In the past parents and others kept quiet about sufferers, who were out of sight in institutions. Now the more that is known about mental illness the better. Attitudes have changed, advances in medical science have enabled lives to be spent outside institutions and care in the community is expected to look after most of those cases.
I congratulate the Government on ring fencing the grant for the mentally ill, which is now the mental illness specific grant. Because so little has generally been known in the past about the subject, local authorities might have used some of the money allocated for other purposes. We are told that the Government are carefully monitoring local authorities' community care plans. If a plan is considered to be seriously deficient, Ministers have the power to give a direction. I trust that Ministers will not hesitate to use that power if necessary.
§ 6.17 p.m.
§ Lord Ashley of Stoke
My Lords, I begin by adding my warm congratulations to the noble Lord, Lord Rix, not only for initiating this very important debate but also for the fine speech he made in doing so. Many of us are in no doubt that the noble Lord has accomplished more for people with learning disabilities than any other single person or group of people in the country. Thousands of people outside this House are indebted to the noble Lord for his efforts. I know that many people both in this House and in another place are also indebted to him.
I congratulate too the noble Lord, Lord Rodney, on a fine maiden speech. That is the traditional thing to say, but it is sincerely meant. The noble Lord's speech was impressive in that it dealt with the vital issue of the right to individual representation. That is of outstanding importance. If people with learning disabilities are denied individual representation, in many cases they have no voice. I am delighted that the noble Lord. Lord Rodney, highlighted that important issue. I take it that 59 the Minister listened very carefully, made comprehensive notes and intends to act immediately on his comments.
I wish also to comment on the point raised by the noble Lord, Lord Redesdale, in relation to respite care, which is very important. Although the noble Lord says to the Minister that he is not asking for large amounts of money, I believe that he ought to do so. We all ought to do so. We need the money for respite care. It is the Minister's job to fight her corner with the Secretary of State in the department and with the Chancellor. I hope that she will press the point about respite care. When people labour for 24 hours a day with very severely handicapped people, it leads to breakdowns in health. It is an important issue.
I thank the noble Lord, Lord Campbell of Croy, for his kind comments on my operation. Obviously, I cannot deal with that issue at present but his remarks are appreciated. We have been old comrades across the Floor of the House in another place and now in this Chamber in fighting for disabled people. I welcome his co-operation on the issue of people with learning disabilities.
My complaint is that while it may be true, as the Government say, that they are listening, they are not reacting. Too many Ministers concerned with the issue are substituting bromides for constructive action. It is tragic that the delicate and tenuous chain of assessment and planning is breaking. Once that chain is broken those people with learning disabilities will suffer. It is sad that assessment takes place against a background of local authority poverty. That is the direct responsibility of central government. Plans are described by MENCAP as "wish lists". How right MENCAP is. Provision has become a question of "priorities" or even of "exclusion". There are too few mandatory requirements and a plethora of voluntary codes. Those have led to an intolerable variation throughout this small country. All are at the expense of the most vulnerable in our society.
The increasing gap between what is needed and what is delivered is deeply disturbing. There can be no excusing the gap, let alone the lengthening of it. The network of necessary services which is so vital to people with learning difficulties may now fall apart under the increasing pressures. If that is too large a statement, I hope that the Minister will correct me and give me an assurance that the network is not falling apart; that it is firm and strong and that the Government are committed to strengthening and improving it. I hope that we can have that commitment, or the acknowledgment from the Minister that what I have said is true.
I wish to focus on one aspect affecting severely disabled people. I refer to housing. It is a key to people's independence, dignity and privacy. Where people live determines largely the quality of their daily lives. Many people with learning difficulties have multiple problems for which specialised housing is required. A number of Acts have been referred to in the debate. Section 2 of the Chronically Sick and Disabled Persons Act 1970 imposes a duty on local authorities to arrange for adaptions or additional facilities needed by all disabled 60 people to secure greater safety, comfort and convenience. We know that that duty is discharged by housing departments giving disability facilities grants (DFGs). Those grants were introduced in the 1989 Act. They are crucial in securing suitable housing for those people whom we discuss under the Question asked by the noble Lord, Lord Rix.
The noble Lord, Lord Allen of Abbeydale, complained that Sections 1 and 2 of the 1986 Act have not yet been implemented. He indicated that the Government were cheating by not implementing those two sections. Of course they are cheating. It is quite wrong to pass Acts of Parliament and then to refuse to implement important sections of the Act. However, the situation is far worse than the noble Lord made out. Some Acts on the statute book have been neglected by the Government. The Royal Association for Disability and Rehabilitation recently issued a report on a two-year project about the enforcement of Section 2 of the 1970 Act to which I referred. The report points out that in the project's first year RADAR received 500 complaints from disabled people who experienced difficulties in obtaining Section 2 services from local authorities. One of their major difficulties was in obtaining house adaptions and special equipment.
We have a law clearly stating that those provisions should be made for severely disabled people; and that law is being neglected. The noble Lord, Lord Allen, was guilty of an understatement in complaining only about sections of an Act not being implemented. That 1970 Act has been enacted and implemented, but is neglected and ignored by the Government. That is a shocking state of affairs. The people who suffer as a consequence of the Government's neglect are the most vulnerable in our society. I am disturbed by the way that the Government are conducting the whole business.
The picture is even darker. Under the disabled facilities grants system, there is a mandatory means test which takes account of the income of all the people who have a legal interest in the property. But no account is taken of the expenditure for, and additional costs of, disability. Fancy that, my Lords ! The Government completely neglect that heavy burden on disabled people but they charge everyone who has an interest in the property. The balance is all wrong. The Government should redress the balance in favour of disabled people rather than the other way round.
I have a sheaf of notes. It contains some points which are stronger than those I have made already. However, I believe that 10 minutes is long enough for anyone speaking in the debate.
The noble Lord, Lord Rix, made a powerful case for the people he so admirably represents. He has support from all sides of the House. It behoves the Government to take note of the points made in the debate. The Minister is always helpful on these issues. I hope that she will do what she can. More than kind words and sympathy from her, we want action in her department.
§ 6.28 p.m.
§ Baroness Cox
My Lords, I join other noble Lords in congratulating the noble Lord, Lord Rix, on introducing this important debate which draws attention to the 61 seriousness of the issues confronting all concerned with care in the community for this vulnerable group of people. I wish to add my congratulations to my noble friend Lord Rodney for a very moving and therefore memorable maiden speech. I congratulate the noble Lord, Lord Ashley of Stoke, for his great courage in speaking so soon after his operation.
I begin by declaring three interests. I serve on West Lambeth National Health Service Community Care Trust; I am a Fellow of the Royal College of Nursing; and I am a patron of Rescare which is the National Society for Mentally Handicapped People in Residential Care. I shall briefly try to reflect some of the anxieties of each of those organisations.
The experience of colleagues in Lambeth suggests that the theory behind the present system is plausible. In other words, the results of assessments should start to feed into both the local interagency client-based joint planning teams as well as into the community care co-ordinating group which has the remit to take a strategic overview and to produce community care plans for the following year.
However, the success or otherwise of the process is impossible to evaluate as yet, as the care managers for this client group have only been in post for a few weeks. Moreover, Lambeth, like many other social service departments, is undergoing radical restructuring in order to reflect the purchaser-provider split. This is a complex process, fraught with difficulties and delays. The problems are exacerbated by a backlog of assessments and a flood of new referrals. The present situation is, therefore, far from satisfactory, as delays in undertaking assessments cause great difficulty for this immensely vulnerable client group and for their carers. It will only be possible to assess the situation and to identify gaps in service provision, and thus to begin to take measures to remedy them, once that backlog has been cleared.
Information from the Royal College of Nursing echoes some of the concerns expressed by those in the frontline of the provision of care in Lambeth. While recognising that community care assessments were intended to give clients and carers the opportunity to influence the care and support they receive, nursing colleagues emphasise that it is far too early to obtain an accurate picture of the extent to which the new system will influence current or future services.
However, in these early days, the picture is variable. Some authorities are more enthusiastic than others. Among the problems identified so far are delays caused by the bureaucratic system in social services compared with the National Health Service. Those are often delays in responding to urgent needs caused by the local authority committee system and the need for decisions to be ratified by councillors.
There is also anxiety over the assessment of clients' health needs in contrast to their social needs and whether social workers or others who are making the assessments are qualified and therefore able adequately to assess the clinical needs of clients, especially those with multiple disabilities or those suffering also from mental health problems. I am glad that my noble friend Lord Campbell of Croy raised the problems of those who suffer from both mental health problems and 62 mental handicap problems. Inevitably there are also concerns widely expressed over the extent to which budgetary considerations will take precedence over the provision of an adequate range of options to serve clients' best interests.
The failure of the present system to respect clients' wishes is a major concern for the charitable organisation, Rescare, which represents many mentally handicapped people and their families. I use the term "mental handicap" out of respect for the families who have themselves expressed a strong preference for that terminology as being less ambiguous and more appropriate than the current "in-phrase" of "learning disabilities". I personally believe that professionals and policy-makers should respect the wishes of those they serve and not impose their own language for professionally, ideologically or politically correct reasons. So while I am speaking about the Rescue concerns, I shall reflect the preferences of those whose interests I am privileged to try to represent. I shall continue to use the term "mental handicap".
Rescare's overriding anxiety is the failure of the present system to give an adequate range of choice to the mentally handicapped and their carers. The closure of many hospitals which had provided long-term residential care has resulted in the discharge of increasing numbers of mentally handicapped people into the community.
I must emphasise that the experiences of many have been happy, especially of those less severely handicapped who constituted the first groups to be discharged. I have visited houses in various places where new life in the community has been appreciated., with all the independence and autonomy it has given to those who were previously institutionalised.
However, for many others the situation has not been a happy experience. As the numbers discharged from hospitals and long-stay institutions increase, they include those who are more vulnerable and highly dependent. They are people for whom life in a three- or four-bedroomed house in a busy high street can be intensely lonely and far more restrictive than life in the larger, more homogeneous community, with all its facilities which they had to leave and which may have been the only world that many of them could ever remember. That point was made by the noble Lord, Lord Rix.
Rescare advocates the establishment of village communities as one option for the mentally handicapped, arguing that they can provide more companionship, relatively greater freedom and a wider range of facilities at relatively less cost than many small houses in the community. That is especially so for the profoundly and/or multiply handicapped. Last year, the Government had listed village communities as one of the options to be provided for the mentally handicapped, However, unfortunately it has been dropped from the latest government circular. There is no reason to suppose that the current system of community care assessments, which the Question before us addresses, will promote that option.
The failure to provide that choice is especially tragic, as many parents of profoundly handicapped sons and 63 daughters believe that a village community would provide the best possible quality of life for their loved ones, especially when the parents become too old to continue caring for them or when the parents die. Moreover, cost is not an argument that can be used against the village option. The cost of good quality residential accommodation and the provision of facilities is considerably cheaper there than comparable provision in a house in the community.
Thus I believe that there is a strong case for at least a number of pilot village communities to be established. They could evolve within existing hospital sites. If the Government could provide some financial help to allow the development of at least a limited number of such communities, they could be evaluated independently, according to the criteria, first, of care effectiveness; secondly, of cost-effectiveness, and, most important, the extent to which they meet the needs and wishes of clients and their carers. That would be a rational and fair way to proceed in the light of the strength of views and the actual experience of many of those involved with the provisions for the mentally handicapped under the new legislation. I wish to ask my noble friend the Minister whether she will consider these proposals seriously.
That addition to the repertoire of services is particularly important since current provisions are tragically manifestly failing to provide adequately for many mentally handicapped people. There has been a disturbing number of cases where mentally handicapped people, discharged from mental hospitals or other long-stay residential institutions, have suffered from neglect and/or abuse. I give just three examples: first, a 32 year-old man who had been discharged from hospital to a private home. He wandered out and was killed crossing a road. But he had already wandered out on many previous occasions; he was a danger to himself and others. Clearly, the support and supervision he was given were totally inadequate. Secondly, a 47 year-old man, discharged from hospital five years ago, was left to cope for himself in a flat, with no visits from care workers. He wanders around the grounds of his former hospital, saying that this is where he has friends and that "it is wrong of them to close it". Thirdly, there was a mentally handicapped woman aged 37 who set fire to herself outside her own home.
I could cite many more examples, but I fear that those cases, which are a small sample of many more reported in the press, are just the tip of an iceberg of lonely, neglected mentally handicapped people for whom the reality is that the community does not care and that provisions made for them after discharge from hospital or other residential care have been woefully inadequate.
Rescare's staff are undertaking a survey of mentally handicapped people and their families. They have found that so far, out of a sample of 1,400 replies, well over 60 per cent. want residential, village-style communities as an option for their relatives. But unless purchasing authorities carry out unbiased, systematic surveys of families to ascertain their wishes, they will continue to fail to satisfy many clients and their carers. The present arrangements for care assessment policies to influence decisions about existing and future services will fail 64 lamentably in their intended objective of enhancing choice and responding to the needs and wishes of those they are intended to serve. If the possibility of some kind of residential and/or village community is not even offered as an option, it will never feature as a choice and will not be taken into account in planning new services.
In conclusion, I must say that sometimes it can be gratifying if one's predictions are proved correct. But I cannot think of any situation in which I would be more pleased to have, been proved wrong. As the National Health Service and Community Care Bill was passing through this House I expressed grave fears that the community care provisions would lead to the kind of problems that we are now seeing, although the concept of community care was well intentioned.
Although new arrangements are working well for many mentally handicapped people and their families—and I want to emphasise that point—there are still too many flaws in the concept and too many deficiencies in the system, including arrangements for care assessment and strategic planning; and too many vulnerable people are suffering as a result. It has been well said that a society can be judged by the extent to which it cares for its most vulnerable members. There can be no more vulnerable group than this.
I therefore ask my noble friend the Minister to reassure noble Lords and all those concerned that the Government will address these problems as a matter of urgency. I specifically hope, and ask, that measures will be taken to clear the backlog in assessments and to provide a genuine range of choice reflecting the needs and wishes of clients and carers, including the option of village communities, which are a proven success in this country—for example, the Camp Hill village communities—and abroad, for example in the Netherlands, which is famous for being in the vanguard of provision for disabled people. I also ask my noble friend to give us some assurance that there will be provisions for clients' health needs as well as their social needs to be adequately assessed and met.
Unless appropriate measures are taken, and taken quickly, more tragedies will hit the headlines and the iceberg of hidden suffering will grow. Anyone who has had the opportunity to meet some of those suffering from the present disjunction between need and provision would feel as passionately as I do that our society is failing to fulfil the requirements of compassion and justice and that urgent measures must be taken to rectify this tragic situation.
§ 6.41 p.m.
§ Lady Kinloss
My Lords, I am pleased to support my noble friend Lord Rix in his Unstarred Question this evening.
With regard to community care, for persons with learning disabilities there are three basic requirements. There is of course the most important question of somewhere to live; then something to do, preferably paid, even if it is only a small amount. This could make such people feel that they have something of their own for which they have worked. There is also the difficult question of friends to share things with. I shall return to that point in a minute. 65 For people of working age the norm is paid employment. In fact, only a few persons of working age with severe learning disabilities are in paid employment. It is possible that more could be. So I congratulate the Government on their determined attempts to improve the take-up of the new disability working allowance, which is one of the ways in which people with severe disabilities can combine disability allowance and earnings. One problem with the uptake of the disability working allowance is the rule that makes it less accessible and less beneficial if one goes through a period of approved training before one starts work. I believe that the Department of Social Security is aware of the anomaly. Can the Minister say whether that is so, and whether anything can be done about it? I would have thought that approved training would be a sensible prelude to starting a job, especially if one had never worked before.
There are several ways to help people with learning disabilities to get into paid employment. One is Pathway Employment Services, which is run by MENCAP. It was started in Cardiff in 1975 and has since become one of the national services developed by MENCAP. Funding for each service is usually either by the local authority or health authority, and in some cases from both.
In York, MENCAP's employment service, which is funded by North Yorkshire County Council, has already succeeded in placing seven people in open employment using the DWA. None of the seven had been in paid employment before; they had spent most of their adult lives in training centres.
A video has been produced by the Department of Social Security and MENCAP featuring Pathway in York, called "The Way to Work", and showing the use of the DWA to get people into jobs. This video shows how their lives were changed and, hopefully, will act as an encouragement to other local authorities, voluntary organisations and employers to create similar opportunities. It is estimated that if the York experience were repeated across the country, it would create real employment for 5,000 people with learning disabilities. This would surely prove that people with learning disabilities can thrive in open employment. Sadly, the official launch of the video had to be postponed in April because of the illness of the Pathway employment officer, but he tells me that it is now hoped to launch it either this coming November or December. I wonder whether that point has yet been brought to the attention of the Minister.
This brings me to the point I mentioned earlier; namely, the case for friends. It has been found that those who are in open employment have made friends with their fellow workers and are therefore much happier and more settled. Indeed, Pathway has a scheme whereby an employee in the company is asked to befriend a new employee for the first few weeks to guide him or her through all the problems of being newly employed. A small gratuity may be paid to the foster worker as a token of appreciation.
I have a young friend who attends one of the day centres in York, Yearsley Bridge centre. I have visited it myself, and was very impressed. It is very well run. 66 The centre is administered by the social security department in York on behalf of the North Yorkshire County Council social security department, which funds it. She has made many friends there and is now living in Howe Hill residential hostel in York. She is with many of her friends from the day centre, which they still attend. That is just, one example of enabling them to make friends, especially those who have ageing parents or a single surviving parent and who may be unable to cope. As the noble Lord, Lord Redesdale, has already said in a most interesting speech, there is no respite care available for the carer. Therefore it would seem to be much better for her to be with her contemporaries, gain stability with them, and retain and improve the skills that she has obtained.
There is another comparatively small group of people, about 21,000, in the United Kingdom who often need an intensive level of support over a long period of time. This is a group of people who are born deaf-blind—not usually totally deaf or totally blind; the combination can cause problems in developing skills and understanding the world. They need careful assessment, especially in education and continuing education, to help them maintain skills that they have acquired and to enable them to have as independent a lifestyle as possible. There is great concern among parents of today's young deaf-blind people who have received a good education provided by teachers skilled in working with deaf-blind children. The parents are afraid that all the successes and efforts made by the children throughout their school life will be lost if there is no provision for them after the age of 19 other than living at home with no opportunities for keeping up their skills. Would the Minister say whether there is much provision in this very specialised field for day centres; namely, whether there are many clay centres? I am sure that the teachers are equally concerned for the future of their pupils.
§ 6.48 p.m.
§ Baroness Faithfull
My Lords, I am the tenth speaker and much of what I intended to say has already been said. I shall not repeat what other noble Lords have so adequately stated. Therefore, I ask the Minister three questions. First, have we really considered the community? We are asking the community to take on responsibilities that they have not before taken on. We have asked the community to have attitudes which they have not indulged in before. In fairness to the community, many people are apprehensive, and indeed frightened, of what they are being asked to take on.
I speak with feeling because, having had to do this work myself, the "not in my backyard" syndrome has been very difficult to contend with. I have great sympathy for the community when they are asked to do something which they do not understand, of which they are fearful, and about which they know nothing. My question to the Minister, following what the noble Lord, Lord Allen of Abbeydale, said, is would it not be wise to give much more publicity perhaps to a charter for community care to help the public to understand what is being required of them? I feel strongly that the public 67 should not be blamed for being fearful or frightened. They should be helped to understand the problems involved.
My second question is what is community care? Has anyone ever really defined it? What is the ethos behind it? Is it to close the big mental hospitals and therefore save finance? Is it in the interests of the patients? I take the point made by my noble friend Lady Cox in that regard. Is it in the interests of people whose children, as well as adults, are in the hospitals?
As I understand it, community care—and like my noble friend I prefer to stick to that description; it is better understood—means, first, that mentally handicapped people in hospitals should either return to their families or stay with their families in the first instance. Secondly, they may be placed with willing relatives or foster carers. Thirdly, because many of those people—as we all acknowledge—cannot live in the community with either families or carers, they may need to be in a home in a residential setting. It does not need to be a large residential setting. Many years ago, in Oxford where I come from, we bought 26 small houses three rooms up and two down—and placed five people in each of them in different parts of the city. Instead of one large institution therefore we had several small ones spread around the city. But even then the residents were lonely because people were fearful of them and did not befriend them. That fact had to be brought to the notice of the neighbours.
The point I want to make to the Minister is that in this country there are a great number of voluntary organisations which look after mentally handicapped people who cannot be with parents, families or foster carers. Most of those homes—not hospitals but places like the Rudolf Steiner homes—have done a magnificent job of work. They raise the money to do that. But there is a crisis coming to this country. I beg the Minister to give us some hope of the Government understanding the problems.
The voluntary organisations raise the money. They employ the staff. They accept people who cannot be with families or foster carers. But local authorities and the Government are cutting back on expenses. As a result those voluntary homes are beginning to lose money. When they lose money the trustees must look carefully at the situation. They are registered charities and as a result may have to close.
Knowing that this debate was taking place today, someone called to see me this morning. Unfortunately I was not at home and he left a note saying that the home for the mentally handicapped that he was running was being closed because the local authority and health service were unable to pay its fees. If the Government do not help the voluntary organisations and if local authorities find that they are unable to pay, then a valuable resource will be lost to the country. At the end of the day it will be more expensive for local authorities; it will be more expensive for government departments. I take the point made by the noble Lord, Lord Bruce of Donington, that, unless we realise what is happening, 68 we shall have a more and not less expensive service because we shall lose the resources of those voluntary organisations.
Noble Lords may ask what I recommend. I recommend that there should be a consortium of the relevant Ministries—the Department of Health, the Department for Education and of course the Home Office—with local authorities and voluntary organisations meeting regularly to exchange views and see the trends. In that way we shall not suddenly find ourselves with no vacancies; with nowhere to place people and no money coming in.
It has been said that the voluntary organisations should market themselves. It is possible to do that. The other day I saw a dress that I wanted badly. I could not afford it. It was beautifully marketed but I could not afford it. This situation is the same. However well a voluntary organisation or charity markets itself, if there is no money they will have to close and we shall lose that resource. I ask the Minister therefore to give some indication as to how the voluntary organisations will be supported and helped; how they will achieve that partnership with local authorities and government departments.
My next point concerns children under five. In the Education Bill—now the Education Act—the whole question of the care and education of under-fives was widely discussed. We pressed for nursery provision or care of some kind for children under five. In your Lordships' House an amendment was moved—I believe it was by my noble friend Lady Blatch—that there should be nursery provision for the most vulnerable of children; for those with special handicaps, so that at an early age they could be assessed and helped. If children who suffer from a disability of any kind, or who are vulnerable or come from a difficult family, are helped between the ages of three and five, they manage to make good progress from five onwards. By not helping them we are building up problems for ourselves because they then take up to the age of seven, 10 or 13 to catch up. Furthermore, if small children attend a nursery and are found to be in need of special help, they can receive that special help at an early age.
The Minister cannot possibly answer my question—it is not her Ministry. But perhaps she will pass on to her colleagues how important it is for a young child to be assessed at an early age, to be helped and treated. I hope that the debate today, for which we are deeply grateful to the noble Lord, Lord Rix, will achieve those aims.
§ 6.58 p.m.
§ Lord Ennals
My Lords, I should like to follow the noble Baroness, Lady Faithfull, by saying how much I support her suggestion—a point made also by the noble Lord, Lord Allen—that there should be a charter for community care. The noble Baroness made out the case extremely well. People do not know what is expected of them. There are many campaigns of one kind or another. But nothing is more important than that the public should understand the responsibility that we have as a society to care for those who are in any way 69 handicapped or unable fully to care for themselves. I refer not only to those with learning difficulties, but also to those with difficulties of any kind.
I particularly want to congratulate the noble Lord, Lord Rix, for initiating such a debate at this time. We could have debated all kinds of other issues. I believe that this is one of the most urgent community care-based issues. It is good for your Lordships' House that we have had such a large response. It often happens that on the first day back from the hols there is not a great deal of enthusiasm to speak. The noble Lord's Question has attracted 15 speakers, many of whom bring to the House a great deal of fresh experience in this area, as did the noble Lord, Lord Rodney, in his very effective maiden speech.
I wish to concentrate on housing and I do not wish to limit my contribution to what is now defined as those with learning difficulties. I also want to touch on, as did the noble Lady, Lady Kinloss, deaf-blind people. One could not have more of a learning difficulty than to be both deaf and blind even if it is only partial deafness and partial blindness. This is where I believe that the title of "those with learning difficulties", which we seem to have adopted and which has been criticised by a number of noble Lords, does not adequately or effectively define those who have a mental handicap. There are all kinds of reasons why people can have a learning difficulty. It is not just limited to people who have a mental handicap. That may well confuse the public. I hope that some thought will be given to this point as clearly a number of noble Lords on different sides of the House have done so.
We are talking about large numbers of people. There are well over a million people with a significant degree of learning disability and 160,000 adults and 30,000 children who have a severe learning disability. Deaf-blind people are a small population—an estimated 21,000 people in the UK. They are a group of people with the highest needs and often require an intensive level of support over a prolonged period of time. I wish to say how much I admire the work that is done by voluntary organisations. They constantly press the case and often provide the services with the assistance of local authorities. The amount that our community owes to voluntary organisations such as MENCAP, MIND, SENSE, or the National Schizophrenia Fellowship is enormous. I am sure that the Minister will have noticed in listening to the debate a deep sense of concern that the resources are not yet adequate to deal with the size of the problem. I shall come onto that point a little later.
I want to concentrate on the problem of housing. Staff in some of our inner London health and social services are familiar with the routine of assessing people with mental health problems who live under a railway arch and of discharging them after hospital treatment knowing that sooner or later, with no family, no job, and no home of their own, they may well land up again under the railway arch. Some people with learning disabilities are homeless in that sense. We know that there has been a great increase in the number of homeless people. But most are homeless in the sense that they have no home of their own. Many are still in hospital or in their parents' home, a state of affairs 70 which often imposes an enormous burden on parents. Those are not necessarily the best circumstances for people with learning difficulties. We should not assume that everyone with learning difficulties wall forever live within a family. Reference was made by the noble Lord, Lord Redesdale, to respite care. One has to recognise that many carers are themselves of a substantial age—perhaps 60, 70, 80 or even 90 years old. The need for respite is very great indeed.
I was reminded that when MENCAP was founded nearly 50 years ago the main concern of parents was "What will happen when we are gone?" It is a tragedy that 50 years later that is still the question being asked. It is a rather sad comment. MENCAP co-operated with the New Era Housing Association, the National Federation of Housing Associations and the Institute of Housing to produce this year a guide to the housing needs of people with learning disabilities and on how to assess local housing need. This begins to fill a significant gap in what we know about this basic need. It suggests that whereas in recent years there have been perhaps 2,000 new places created each year we actually need about 5,000 new places a year if we are to meet our responsibility. This is a minimum estimate based on hospitals closing and elderly parents dying. It stops well short of any positive target such as guaranteeing people with learning difficulties a home of their own by the age of 30, which is the kind of target for which we should be aiming.
All of us know of people with significant learning difficulties who are able to cope in homes of their own, often shared with two or three other people and sometimes, as I know from one of my relatives, shared with a person who has no learning difficulties but who is prepared to form a kind of home co-operative where people with learning difficulties can feel at home. There is a large gap between identified needs and planned developments. Some plans record a fairly urgent need for 80 or so places, but offer a tentative budget for no more than six or so places. Local authorities throughout the country, as they try to meet some need, are by no means able even to contemplate meeting the assessed need.
While bridging the housing gap is actually not a major task in terms of overall housing need, or of the kind of housing programmes we used to take seriously a decade or so ago, we are talking about increasing the current special needs housing programme for this group by two and a half times. If we are to meet that target the funds have to be provided. I am concerned whether there is security for the special needs programme and whether new allocations will be there to support capital possibilities. There is a fairly determined drive to pass the whole housing support responsibility to social service departments by relabelling housing support as social care. We have to watch that very carefully as responsibilities are loaded on local authorities which do not have the resources to meet the needs.
I wish to say a few words about SENSE and the deaf-blind. SENSE has recently undertaken a survey of the concerns of 1,500 deaf-blind people and their families. The initial responses indicated a tremendous concern over the lack of provision, as the noble Lady, 71 Lady Kinloss, said, after age 19 and a particular need for residential services. The need for day provision and further education is highlighted.
Another area of great concern was respite care for adults as there is virtually no provision recorded as being acceptable to families. The response to the survey indicated two groups with particular concerns. The first was elderly parents looking after their middle-aged deaf-blind sons and daughters where there appears to be no movement to enable those adults to move on. The second was that there are now many deaf-blind young people who have received a good education provided by teachers skilled in working with deaf-blind children. They are very concerned that all the efforts and successes throughout school life will be lost if there is no future after age 19 other than remaining in the parental home with no opportunities for a meaningful life.
I conclude by hoping that the Minister will be able to give us some kind of reassurance about funding. I remember very well—not just as regards the debates which we had about the National Health Service and Community Care Act, but when the Minister announced the funds that were going to be available—that I said that I was quite confident that the local authorities were right in saying that the funds were inadequate. That seems to be the case. I hope that the Minister will be able to give us some kind of reassurance when she comes to reply to the debate.
§ 7.10 p.m.
§ Lord Pearson of Rannoch
My Lords, I too would like to thank the noble Lord, Lord Rix, for initiating this debate which comes at a time when we are starting to see the early results of the Government's community care policy and its effect on the mentally handicapped and others. I would also like to congratulate my noble friend Lord Rodney on his knowledgeable and wide-ranging maiden speech especially, I confess, because he gave a fair wind to the main thrust of what I have to say this evening. I hope that we shall hear from him again very soon.
I use the expression "mentally handicapped" deliberately because I find the expression "people with learning disabilities" confusing and indeed irritating. Like other politically correct expressions such as "people with learning difficulties" and "special education needs", I can only assume that it covers a broader range of disadvantage than mental handicap to which I refer specially tonight.
Before I do so I should declare an interest as the father of a 12-year old Down's Syndrome child who is therefore mentally handicapped, and as a patron of Rescare, the national society for mentally handicapped people in residential care. My noble friend Lady Cox, who is also a patron of Rescare, has already referred to some of the difficulties which it faces in its attempt to promote residential, sheltered village communities as a genuine option for the mentally handicapped and their families.
To earth what I am about to say firmly in the question before us, I would point out that if one particular form 72 of provision is being unfairly discriminated against by the Department of Health, as I believe is the case with village communities, then community care assessments, however accurate, are likely to result in some very vulnerable people being cruelly sent in the wrong direction. My noble friend Lady Cox has already given examples of where that is indeed happening and, of course, I could give many more.
So I hope that it is helpful if I start by looking at a little of what has been going on behind the scenes in the Department of Health. The problem appears to have started last year when the Government surprisingly left village communities off the list of provision which local authorities are encouraged to support. That was a complete volte face from previous government policy which had been wisely and publicly supported by my honourable friend Mr. Stephen Dorell when he was a Minister at the Department of Health, and which included village communities alongside other forms of provision. When Rescare asked the Department why this had happened, we were told that active support for village communities had been dropped because a survey conducted by the department had come out strongly against them. When we eventually extracted details of the survey's findings we learnt that there had been only 43 respondents to the department's questionnaire which had been sent to literally hundreds of recipients. Of the 43 respondents, 20 made no comment for or against village communities. Three respondents, including Rescare, supported them and 20 had commented negatively. But of those 20, some 15 respondents were social services or local authority departments and only five were other voluntary organisations. So far the department has been reluctant to tell us who those five voluntary organisations were, which I believe is a pity because we would like to get in touch with them to make sure that they have not misunderstood the kind of service which we are trying to promote.
I wonder whether I can ask my noble friend the Minister to reconsider this position and to let us know who they are in due course, perhaps by correspondence. Furthermore, I ask my noble friend, when she comes to reply this evening, to agree that her department's survey can scarcely be described as sufficiently authoritative to have had such a profoundly negative effect on the service we favour. As my noble friend considers her reply, perhaps I should remind her of some statistics already given to us by my noble friend Lady Cox about Rescare's ongoing survey of families with a mentally handicapped member. Of the 1,400 families so far questioned, over 60 per cent. wish to see their mentally handicapped relative cared for in sheltered residential or village communities.
Whether or not the five other voluntary organisations which were negative about village communities have misunderstood them, I am afraid that there are some senior civil servants in the Department of Health who have clearly not yet grasped the basics of what a village community is and what Rescare stands for. I say that because, together with other Rescare officers, I attended a meeting at the department on 13th May this year. After we had finished complaining about the survey to which I have just referred, we gave examples of some of the 73 existing hospitals for the mentally handicapped which have not yet been closed and which we believe could be adapted to become village communities. We mentioned St. Ebba's in Epsom; Offerton House in Stockport, Northgate Hospital in Newcastle, Bromham Hospital in Bedford and Cranage Hall Hospital in Cheshire. When we mentioned, I believe, Cranage Hall, a senior civil servant present interjected that we could not possibly want to keep that institution open because it had some of the worst wards in the sector.
Now of course 1 make no criticism whatever of the civil servant in question. I merely mention this conversation to show how there may still be substantial misunderstanding, even among those who advise the Secretary of State, as to what we mean by a sheltered village community. Perhaps we have failed so far in our public relations. I emphasise that we are as opposed to wards as anyone else. We have no wish to return to the horrific scenes depicted by the film "One Flew Over the Cuckoo's Nest" which I believe has had such an influence on the matter we are discussing this evening. We favour the bungalow concept.
I hope it will help to promote more widespread understanding of what Rescare stands for and what a village community should be like, if I put on record the concept outlined in 1988 by the St. Ebba's Parents' and Relatives' Group which was supported by the Manor and Queen Elizabeth Hospitals' Groups and by the local MENCAP. It resembles schemes which we have proposed elsewhere. I quote from the St. Ebba's proposal of 1988:We see a collection of small homes scattered about the pleasant grounds of St Ebba's. Several of the existing listed buildings would be suitable for further conversion and improvement. Each home would be managed individually, making for diversity, either by direct delegation from the responsible authority or through existing organisations experienced in this field. It would have, as the hospital does now, specialised on-site services for occupation, training, medical and para-medical care, and facilities for entertainment and sporting activities. It would allow residents freedom to wander around in safety, which is enjoyable and therapeutic".I say in brackets that that is not a freedom which is freely available to many under our community care programme. The proposal continues:It would provide a home for life for each of the existing residents and a new home for those living with their parents into which to move as family circumstances changed. It would be associated with satellite homes in the neighbouring district for those people capable of more independent living, so providing flexibility for people as their needs change. It would provide opportunities for sheltered employment to residents and non-residents. It would offer its range of services to mentally handicapped people living outside to use as daily visitors and would offer flexible respite care. It would give residents freedom to attend functions and entertainment outside and where appropriate to enrol in courses at local colleges and take up suitable employment. It could become a centre of excellence with training for staff and opportunities for research in mental handicap-causes, prevention, treatment and management".Yet, even with a credo like that, no one from Rescare has been included in the new user and carer group, which I gather has been set up to advise Ministers and civil servants on how the community care policy is working at ground level and to offer recommendations. That might be fair enough, but we have found it difficult to discover who the members of the group are. We have merely been sent a list of names, together with the town 74 or country from which they come. So I trust that noble Lords will forgive me if at this point we have a slight chip on our shoulder which I trust my noble friend the Minister will be able to remove this evening in her usual charming way.
As to the numbers of mentally handicapped people which village communities should hold, we reject any arbitrary limit—for example, 150—as being based on flawed ideology or false deduction from other unsatisfactory experience. So I very much hope that the pressure which I hear is now being applied to Ravenswood and Botton villages by local registration officials to reduce numbers, will cease forthwith.
If anyone doubts that larger residential communities can be safely encouraged, they have only to go to the Netherlands and look at what the Dutch are doing. Virtually all the Dutch provision is post-war. Although their population is only about one-third of that of the United Kingdom, they have more places in centres of more than 300 people each than we have in all our hospitals combined 27,000 compared with some 22,000 in the United Kingdom. The number living in such centres appears to have increased rather than decreased in the past 10 years. Parents from the United Kingdom who have visited Holland and a Rescare committee member who is a nurse and has worked there, all testify to the high standard of homely care. They report good individual programmes, excellent specialised services and good community services with flexible access to and from these large residential centres.
So, any arbitrary limit on the size of a village community seems likely to be misguided. Leadership, competence, local organisation, sustained enthusiasm and compassion are the ingredients of success; numbers are largely irrelevant.
I come now to the question of comparative costs between village community care and other forms of provision, notably community care itself. There does not appear to be much reliable data where comparisons capture all the costs involved, regardless of the budget to which they are charged. In a quest for such information, I tabled a Written Question on 26th July, the answer to which has just reached me, to the effect that the information is not kept centrally. However, I understand that a draft NHS Management Executive report says that costs per resident under the community care programme generally vary from some £15,000 to £26,000 per annum. But these costs appear to be for the residential care only, and to exclude the cost of day services, health care and so on. Moreover, even these residential costs can be very much higher. For instance, I have come upon one example where the residential cost of keeping two people in an ordinary house under the community care programme amounts to £170,000 per annum. Since one of the residents in question suffers from what is known as "chronic unremitting challenging behaviour", one cannot help wondering whether he might not be better and more cheaply looked after in a secure residential environment.
Be that as it may, our position at Rescare is that good quality residential care costs about 65 per cent. less than similar care under the new community care programme. 75 Annual costs per resident in residential care seem to average around £25,000, but this would include a substantial NHS management charge and would also cover the costs of such essential on-site services as primary health care and consultant psychiatry; ancillary medical services such as drama and music therapy; extended education and training; occupational therapy; and recreation.
I would be most interested to know whether my noble friend the Minister has a view on these estimates and whether she can ask for further impartial analysis. In fact, we suggested to the department in May, as my noble friend Lady Cox has mentioned, that one or two pilot schemes turning existing residential hospitals into village communities should be carefully costed, and that an independent assessment should be made of the quality of life which they would offer. As of today, I regret to say that no answer has been forthcoming from the department. I hope that my noble friend can give this suggestion her blessing in due course.
To conclude on a general note, I have to disagree with those who believe that our community care problems can be cured by the simple injection of more money into the system. I believe the real problem lies deeper, and that the policy, though well intentioned, is fundamentally flawed for many people. There is not really enough of a community where we are forcing many of our mentally handicapped people to go, and it does not care all that much either. Of course, it may suit some people. Some people will be luckier with their social workers and other support than others, and where community care works, I wish it well. But the picture is confused and I feel that village communities should be invited to play a full and vigorous part in the nation's care of some of our most vulnerable citizens. I very much hope that my noble friend will be able to agree.
§ 7.24 p.m.
§ Lord Palmer
My Lords, I too am most grateful to my noble friend Lord Rix for asking this important Question tonight. I should also like to add my sincere congratulations to my old friend the noble Lord, Lord Rodney, on his excellent and well researched maiden speech.
I would like to start by telling your Lordships about a little girl of 10. She finds it impossible to understand anything anyone says to her—and that includes her family. She is aggressive and she screams from dawn to dusk. She is incapable of feeding herself. She does not recognise her name. She is incontinent and has regular fits which lead to unconsciousness. I do not know her name, but some of your Lordships may recognise her. She is, in fact, the little girl chosen in the 1989 social survey report The Prevalence of Disability among Children to give an example of what it is like to be one of the 30,000 most severely disabled children in Britain today.
Some people may think that the number of such children is reducing while maternity services improve. It is true that parents now have more information about the likelihood of a child being born disabled, and with the option of terminating pregnancies we have 76 undoubtedly become better at looking after children with learning disabilities. We must be proud of that achievement.
All three of my children were born on the National Health Service in the Western General hospital in Edinburgh, where the ante- and post-natal care is second to none. It is important to remember that the ante-natal prognosis of spina bifida was originally researched and developed at that hospital.
If we look at' the figures for births with congenital malformations in England and Wales between 1975 and 1991, we see that some categories have fallen dramatically. For example, the number of spina bifida births has fallen from 1,101 in 1975 to just 94 in 1991. The number of children born with anencephalus has dropped from 775 to just 12 in the same period. But chromosomal abnormalities have gone up from 70 to 531 and, sadly, Down's syndrome births have remained about the same with a 14-year average of 462. The Family Fund suggests that there has in fact been a marked increase in the number of severely disabled young children living at home with their families.
I am concerned that local authorities in England and Wales are being slow to develop registers under the 1989 Children Act. As a result of that dilatory approach, our knowledge of these children and perhaps more importantly their needs is far from complete. If we do not know the full extent of the situation, we cannot plan and if we do not plan, we are at risk of coming unstuck. I realise that the National Health Service and Community Care Act applies mainly to adults, but surely it is in childhood that a learning disability must be recognised, as the noble Baroness, Lady Faithfull, so sensibly stressed. It is important that that is done so that needs can be assessed, plans made, and, finally, services and help started.
I believe that it is important when assessing anyone of any age that those assessments are made with what is actually required in mind rather than what is readily available; otherwise I fear that tragic mistakes will materialise. Tales of people waiting for up to two years before being assessed are, I believe, totally unacceptable in our society today. I congratulate the Government on trying to tighten up on the timing and relevance of assessments carried out under the Education Act.
I started with a tragic scenario I would like to end by telling your Lordships of a success story. In my local town the Eildon Housing Association has set up a unit to accommodate people from institutions, run in some cases by charities or larger old fashioned state-run hospitals, with a view to re-introducing patients into the community at large. There has, as a result, been a marked improvement in the physical and mental well-being of patients, with some surprising results. That has had no great impact on the local resources available and, according to our local medical practice, the medical attention has been no more than that required by the average registered medical patient. That suggests that funding generally per capita north of the Border is greater than in England and Wales. The Government should perhaps consider addressing that situation.
77 Finally, I should like to ask the Minister for an assurance that National Health Service and Community Care Act assessment will draw upon the Education Act and the Children Act assessments, where available, so that there is a picture of people over time and not just at a point in time which inevitably is a time of crisis. I also hope that those assessments will cover people's strengths and wishes and not just their weaknesses and impossibilities.
§ 7.30 p.m.
§ Lord Renton
My Lords, I wish first to join with those who have criticised the expression "learning disabilities". It is misleading and confusing. Everyone has a learning disability of some sort. There was a Lord Chancellor in the 1920s who could not tell "God Save the King", as it then was, from "It's a long way to Tipperary". I would sell my soul to the devil if I could play the piano with more than one finger, but I cannot. There are mentally handicapped people who are brilliant artists, which, alas, I am not. I do not know how the phrase crept in, but I hope that the Secretary of State, her Ministers and the department will give a lead in using the more accurate term "mental handicap". It is no good saying, "Oh, but it is insensitive". Are we to have sensitivity conquering the truth? In any event, the expression "learning disabilities" is somewhat insensitive. especially in the context in which it is sometimes used. Do let us try to get a bit of sense into this matter.
This important debate, so well initiated by the noble Lord, Lord Rix, is taking place at a time when we have a budget deficit of £50 billion in a year. The Treasury has to search for economies. But the clear message from the debate is that community care is costly and more, not less, money is needed for it; and that failure to provide the money causes hardship, misery, and, indeed, shame on the part of the whole community which has a duty to provide care for those most in need. Perhaps I may remind my noble friends on the Front Bench that it is a Tory principle that we give a high priority to caring for those most in need.
I hope that it will not be considered irrelevant if I try to put the whole subject into its true perspective by going back just 15 years. That is not far in the evolution of social policy. In 1978, when it so happens that I became chairman of MENCAP—I claim no credit for what I am about to say—it had been considered for quite a long time to be unfortunate that thousands of people, both adults and children, suffering from mental handicap were shut away in long-stay hospitals. They were often just forgotten by their own families, alas! That was the social attitude at the time. But before I became chairman, MENCAP had decided to do something about it.
In the spring of 1979 the noble Lord, Lord Ennals, whose speech we all respected, addressed the MENCAP annual conference. It was put to him that he should get mentally handicapped people out of long-stay hospitals. He agreed in principle. I do not criticise him when I say that between that AGM and the start of the general election campaign he did not have long enough to get money out of the Treasury to help us get on with the job. In the autumn of that year, when my noble friend Lord 78 Jenkin of Roding was the responsible Secretary of State, a modest sum was given to MENCAP for administrative help in starting our Homes Foundation. That was the beginning of a movement to provide lots of small hostels so that mentally handicapped people could live in the community. It has been a great success. The noble Lord, Lord Rix, became secretary general of MENCAP in that year (1980).
What happened between 1980 and 1986? It is impressive. The number of children and young people in long-stay hospitals was reduced from 2,500 to only 14. That is not bad. I am glad to say that none of the mentally handicapped children and young people who were discharged was merely turned out onto the streets. Some of them went to their own parents. Places were found for them in various kinds of living accommodation where they could receive care and treatment as, for example, at Ravenswood with which the noble Lord, Lord Palmer, is familiar, and where he has given us such encouragement.
It so happens that my severely handicapped daughter has been at Ravenswood for years and years. It is a charity. It now has 140 residents, as we call them. The cost of running Ravenswood is immense. We are having to raise about £1.5 million just to renovate and rebuild buildings that were constructed only 30 years ago. All those people live in. A few of them are able to go out and do simple work in the village. We have to have a three-shift system of people caring for them, and that is expensive. These people deserve to he paid properly, because it is not easy work.
Local authorities gradually came round to the idea. The performance of local authorities has been uneven. That is something we must face. In Cambridgeshire, which I know best, the local authorities have done very well. It is reassuring to know that under the 1990 Act the Government have some powers of persuasion.
Those parents who could house those children and other children who were found to be mentally handicapped in more recent years, are getting old. So are the children. They are grown up. We cannot assume that the parents with those people living at home, and who are doing their best, can go on forever. The parents will become old. They will die Something has to be done to place the children where they can be looked after properly. There is therefore a need for residential and nursing accommodation to cover just those cases which are increasing all the time. Still more money is required.
I wish to add only one comment. It is that having been a friend of the late Lord Rodney I know that he would be proud to have heard his son make his maiden speech today.
§ 7.40 p.m.
§ Lord Williams of Mostyn
My Lords, I have sat in your Lordships' House for a brief time—hardly a year—but I hope that I have learnt at least two things. The first is that when the views of your Lordships are expressed as powerfully, with such unanimity and without reference to any party line, as they have been today, it is by and large a good idea for Ministers to attend. The second is that occasionally one hears a speech of such power and grace that it lingers in the 79 memory. We heard such a speech today and it was a maiden speech. I thought that the speech of the noble Lord, Lord Rodney, was moving in both best senses; it was affecting and it was persuasive.
Most of the themes seem to have crystallised on the basis of agreement. The first is that there must be a correct definition of those with learning disabilities or mental handicaps. The second is that there needs to be as precise an assessment of numbers and needs as possible. The third is that whatever the schemes they must be the subject of the fullest consultation. The fourth is that there must be a proper evaluation of the efficient expenditure of money upon these schemes. The fifth is that above all and underpinning everything there must be the fullhearted recognition that all our fellow citizens, whatever their disabilities and handicaps, have a contribution to make, each in a different way, to the life of this country and that every one of them is worthy of a decent regard.
The keynote that seems to have concerned your Lordships is that there should be understanding, co-operation and consultation. Of course, as was indicated by the noble Lord, Lord Renton, resources are tight. But given reasonable consultation most people will accept the limits of finance. What they abominate—and rightly in our view—is the thought that difference or disability somehow means a lower state or that handicap or disability disentitles one to any decent consideration.
On cue, as always, my noble friend Lord Bruce of Donington returns to the Chamber. I wish to endorse as strongly as I can his remarks about what the Portillo tendency appears to—I almost used the words "believe in" but I think that I should use the word "represent". It is the suggestion that the more the state does somehow diminishes an individual. I suppose that it is now what architects call "the new brutalism". We say that that approach has no part in any decent country.
There are a number of questions which need to be attended to. There is the question of respite care. No one who gives care freely and willingly to their relatives and friends who are handicapped or disabled regrets or resents it. But the burden becomes intolerable. There are the burdens of age and of daily drudgery, which affection or love cannot alleviate although they may motivate the acceptance of the burdens. As my noble friend Lord Bruce pointed out, there is these days the increasing burden of sheer poverty. You cannot be generous with your resources if they will suffice barely for you alone.
A number of questions need to be answered. There is the question of the permanent ringfencing of funds for these invaluable services. There is the question of the community care charter. There is the serious and deep question of whether assessment is truly available for all those who need it. There is the question of whether as regards the partial deregulation of private homes and institutions there should not now be a national inspectorate and not one left to individual local authorities. There is also the question of representation. How is a handicapped or disabled person to have his or her view made known? They are human beings with an 80 entitlement if not that their requests always be fulfilled at least that their requests be heard and understood. Will cash or resources be made available for that representation? Are release assessments sensibly related to the provision of care in the community?
Perhaps I may mention a single case which your Lordships have touched upon. It is that of Mrs. Zito whose husband of such short a while was done to death by someone let out in community care. She is a woman of saintly forbearance and says that she does not blame the man who killed her husband. She says that he was blameless, let out into a community with no care and no personal resources to assist him. Is that really what we have come to at the end of the 20th century? There is also the question referred to by the noble Lord, Lord Allen of Abbeydale; that is the wilful refusal to bring into effect Acts which have been passed by Sovereign assemblies.
I practise in the Temple. It is a wealthy island of privilege surrounded increasingly during recent years by a growing number, week by week, of mentally handicapped disabled people. It is immediately next door to those few acres of wealth and privilege in the centre of the capital of what we claim to be a great country. There is no care for them. There is little community except what they make for themselves while sleeping on cardboard in doorways. The noble Lady, Baroness Cox, used the phrase "manifest failure". I believe that that feeling of unhappiness and of manifest failure informed all your Lordships' speeches. That is the question which we respectfully ask the Minister to attend to.
§ 7.48 p.m.
§ Baroness Cumberlege
My Lords, I should like to thank the noble Lord, Lord Rix, for initiating the debate. His diligence if not in attracting a huge audience on this opening night has attracted at least a large and noble cast of well-informed experts in this field. As chairman and previously secretary general of MENCAP, the noble Lord has been a courageous and doughty fighter for the rights of people with learning disabilities. Through his leadership the Department of Health and MENCAP have a good working relationship and as a consequence MENCAP has been involved in the development of policy. I so agree with my noble friend Lady Faithfull that innovation often comes from non-governmental organisations. They bring a range of skills and expertise which enrich the lives of many people. In recognition of that, this year we are giving £1.4 million in Section 64 grants to organisations concerned with learning disabilities, including a core grant of £250,000 to MENCAP. But of course I understand the pressures which my noble friend Lady Faithfull outlined. I should like to take up with her informally her point about a consortium.
I wish to pay tribute to my noble friend Lord Rodney on his maiden speech. Maidens are gently treated in your Lordships' House but I can see that this maiden will not require favours as he will hold his own in any debate.
It is with great regret that I start my speech in this debate with an unpopular disclaimer. I recognise that the 81 politically correct term "people with learning disabilities" is not popular in your Lordships' House. However, I am assured that the term is used because of the pressure put on the department by people with a mental handicap and those involved in their care. I believe that in this instance, names are not so important, but as that appears to be the popular wish, it is one that I shall use this evening.
It is too soon to reach any firm impressions about whether community care assessments are influencing decisions. The Act has only been fully implemented for fewer than six months and 1st April was not intended to be a big bang. A great deal of hard work went on before then, and we have always made clear that the reforms are a long-term strategy. Even so, I have been impressed by the enthusiasm and determination with which various organisations and individuals are seeking to use the assessment, care management and planning processes to improve the services that they offer. Although I cannot yet report in detail. I can certainly offer the noble Lord, Lord Ashley, the assurance that community care is not falling apart.
The Government are closely monitoring community care reforms to see that people are getting the services they require and when there is a short-fall, the extent of that short-fall. We are undertaking research and will commission more as new arrangements develop further. We have also extended the statistics that we collect, so that in future we will have better information on the provision of home and day care, the meals services and residential provision. That will give us new information on just the kind of matters raised by my noble friend Lady Cox. I am delighted that my noble friend's knowledge, integrity and wisdom are being used on a trust board, but I am concerned about the backlog of assessments to which she referred. I know that some local authorities have started slowly, appointing staff as the work accumulates. They are now getting up to speed.
Right now, the Social Services Inspectorate and regional health authorities are busy with an extensive programme of monitoring. They have just completed a round of visits and discussions with every local and health authority in England. The results of that exercise are currently being collated and will be available shortly.
They are also undertaking a number of more detailed studies of particular aspects of the new arrangements. We have picked out key themes, including care management and assessment, purchasing and contracting and community care planning. There will also be studies concentrating exclusively on particular client groups, including people with learning disabilities.
The first six of these studies is nearing completion and is currently being written up. The second batch of studies, including one on implementing community care for people with learning disabilities, is just about to get under way and is due for completion over the next six months. My colleagues in Wales, Scotland and Northern Ireland also have extensive arrangements in hand.
Of course, the Government are not alone in monitoring. The Audit Commission has carried out a survey of authorities' purchasing and contracting 82 arrangements. The Association of Directors of Social Services, the local authority associations, the Association of Residential Care (ARC) and other providers all have work in hand. But if the noble Lord, Lord Williams of Mostyn, believes that to be inadequate, we shall consider at a later stage, when we are committed to a review in 1995, whether that is sufficient and at that stage we shall consider whether we need a completely independent national inspectorate or national standards.
The noble Lord, Lord Bruce of Donington, will be pleased to hear me say that the Government do not. presume to have the answers to the needs of each individual; that would be arrogant. It is the people themselves, their relatives and carers who know what they need. We have always stressed the importance of service users and their carers which is why we have also established a National Users and Carers Group. This group reports directly to Ministers so that we can get a real picture of how the reforms are working from the user's point of view. That group will be useful in. meeting some of the anxieties expressed by the noble Lord, Lord Allen of Abbeydale.
As your Lordships will be aware, the role of local authorities is central to the success of the new arrangements. To address the point made by my noble friend Lady Cox, the Government have made it clear, that their assessment procedures should be as simple, quick and efficient as possible. They are left in no doubt that they are responsible for ensuring that people receive the care they need, when they need it. We are monitoring closely, and I know that the Association of Directors of Social Services attaches great importance to that issue.
Perhaps I may now pick up the point made by the noble Lord, Lord Allen of Abbeydale, about exclusions and whether there is sufficient co-ordination with. the Department of Health. Assessments are not restricted to cases where the local authority has an off-the-shelf service to provide. All people who may be eligible for community care services have a right to assessment. Assessments may be arranged with a client or requested by friends, family or the family doctor. Where people seem to have both health and social services needs, we expect the assessment procedure to be carried out jointly.
The department has encouraged authorities to set out clear eligibility criteria so that people with learning disabilities and their carers know where they stand., and can share in the results of assessments. I hope I can reassure the noble Lord, Lord Palmer, that authorities have a duty to discuss with their clients, existing and potential, their wishes and preference and to ensure that what they say is given proper weight. No longer should existing services dictate need. The new arrangements reverse the process so that needs dictate services For some social workers I know this is difficult. Their are used to slotting people into established provision instead of looking wider, being more imaginative, seeing all the strengths in a community and drawing on those, rather than surrounding the individual with the traditional statutory "package of care"—I use their 83 words not mine! We have also encouraged authorities to collect and record the information they need in order to plan and improve services.
A number of your Lordships mentioned the subject of advocacy. In the past people with learning disabilities have seldom been treated as individuals in their own right. They have been seen too often as passive recipients of care who must learn to live with a "one size fits all" service. Our guidance, issued to health and local authorities last year, reverses that. We are anxious that people should be given the respect that they deserve. We all need to work harder at listening to their views. I make no bones about that. It is what the Caring for People White Paper is all about.
So the guidance encourages authorities to help people express their views either through the development of self advocacy skills or through an independent advocate. We also support a number of voluntary bodies in projects which encourage self advocacy, as well as others which provide advocates or companions on a voluntary basis.
The noble Lord, Lord Allen of Abbeydale, if I understood him right, and my noble friend Lord Rodney were concerned to see the demise of the principles in past Acts and in particular, the Disabled Persons Act. The procedures now in force enable anyone to make representations on behalf of disabled people at any time. So the provisions of Sections 1, 2 and 3 of the Disabled Persons Act 1986 have in effect been overtaken by subsequent events. However, we propose, as promised, to review the need to implement those sections of the Act in the light of several years' experience of the community care arrangements.
Residential services often play an important part in the care provided for a person with learning disabilities. Both the individual and his or her family may have strong preferences on this issue. Our Direction on Choice places a binding duty on authorities to place people assessed as needing residential care in a home of their choice, subject to certain practical considerations such as cost and suitability.
When we reviewed our policy on residential care we concluded that a wide range of choices can be exercised, but the key question to be asked locally is what range of housing and support services can be commissioned or provided to ensure the greatest scope in moving towards greater independence and a more normal way of life? So often it is the poverty of our imaginations and aspirations that hold back and deny handicapped people a way of life that we take for granted but believe to be impossible for them.
I note the views of my noble friends Lady Cox and Lord Pearson of Rannoch about the advantages of village communities. Our guidance does not rule out village communities. When we last reviewed our policy on residential services we concluded that there was a very wide range of acceptable living arrangements. The important point is that services needed to be planned to meet the needs of individuals; what might be right for one might not be right for others.
It was recognised also that it might be difficult to provide quality care economically in very small groups, 84 especially for people who need high staffing levels because of their multiple disabilities, a point made forcefully by my noble friend Lord Pearson. However, the majority of people to whom we spoke during our review felt that it was also difficult to achieve individually-based services in large numbers. As the noble Lord, Lord Ennals, pointed out, large institutions can add their own negative effects to the initial disabilities of those being cared for. Surely the key issue is what range of housing and support services can provide greater scope in moving towards an individually-based service.
My noble friend Lady Cox highlighted some case histories which I must say I found distressing and which must be addressed through careful case planning. But as my noble friend Lord Renton pointed out, thousands of people have moved happily from institutions into town and village life. People who for years were put away—their words, not mine—now have part-time jobs which are so important to every individual, as highlighted by the noble Lady, Lady Kinloss. They go down to the pub, they go to church, and some of them have even got married. Those are things that we take for granted but which have been denied them for so long.
I am very tempted to enter a detailed debate on the specific proposals for St. Ebba's Hospital, Epsom, as I know both it and those involved well. However, I shall resist. I am sorry that Rescare was disappointed at the outcome of the recent meeting of officials. However, I understand that Rescare has, as suggested at the meeting, decided to prepare a formal bid for the evaluation of a project establishing a village community. Although I can give no guarantee that that bid will be successful, I shall ensure that it receives full consideration.
The noble Lords, Lord Rix and Lord Ennals, and my noble friend Lord Rodney raised the specific issue of housing. I am aware of the report Community Care Planning: A Model for Housing Need Assessment with Reference to People with Learning Disabilities. I know that the report has been most warmly welcomed. The 1990 White Paper also stressed the importance of social services departments working closely with housing authorities, housing associations and the private and independent sector in developing a full and flexible range of accommodation—the need for which was so clearly emphasised by the noble Lord, Lord Ennals. We have taken a number of opportunities since then to reinforce that, including the September circular issued by the Department of Health jointly with the Department of the Environment.
As the noble Lady, Lady Kinloss, pointed out, day services also play an important part. Although there has been a significant increase in the number of places—an increase of 35 per cent. since 1979—as my noble friend Lord Renton pointed out, that and other service provision remains patchy. I so agree with the noble Lord, Lord Redesdale, that respite care is also crucial. It is not a luxury. The noble Lord was right to point out that often it can only be obtained in a crisis. But the whole purpose of assessment is to ensure that services are planned and not available only in a crisis. The noble 85 Lord also asked me for specific information regarding student action groups. I shall have to write to the noble Lord on that matter.
I return to the points made by the noble Lady, Lady Kinloss. Some authorities have already made considerable progress in arranging worthwhile day activities, especially as regards employment. I can cite Lancashire County Council as a stunning example. The noble Lord, Lord Rix, mentioned the Open University course. I know that that has been of great value to people with learning disabilities and also to their families. We are considering whether it is possible to make a contribution to the costs of the revision of that particular course.
The noble Lord, Lord Allen, and my noble friend Lady Faithful! suggested a community care charter. The community care reforms are rooted in charter principles—such as individual choice and published standards. We have noted the committee's recommendations and we have not dismissed them. We shall certainly keep them in mind as we consider how to develop the policy further.
My noble friend Lady Faithful] also suggested that a consortium should be established for community care. I certainly agree that policy in the area must be developed by discussion and collaboration with all those involved. Consultation is part and parcel of the way we work now and the way that we shall continue to work. It is one of the pleasures of the policy that it has for a long time attracted such wide-ranging support.
The noble Lords, Lord Ennals and Lord Williams of Mostyn, highlighted the role of elderly carers. Of course, parents and carers are often understandably anxious about the continuity of caring and service provision for their children when they are no longer able to care for them. Authorities need to take account of those people with learning disabilities still living with their parents when developing their plans for the provision of services.
I know that both the noble Lord, Lord Rix, and the noble. Lord, Lord Bruce of Donington, pleaded for authorities to be easy on charging for services. But the Government believe that it is right and fair that those able to meet all or part of the economic cost of providing those services should be expected to do so. It is for local authorities to decide charging policies for day and domiciliary care. The Government believe that they should be able to take into account attendance allowance arid other benefits. However, any charges made must be reasonable and also take account of what everyone can afford. Those who find it difficult to meet the charge have a right to ask the local authority for a review. We believe that there should be no automatic right to free service. It is not in the best interests of those who use services to reduce the overall level of provision by providing those services free, regardless of whether some users are able to meet all or part of the costs.
Many of the issues raised by my noble friend Lord Campbell of Croy, although concerning mental illness, cross over into tonight's debate. However, schizophrenia is a condition with particularly disturbing results. 86 My right honourable friend the Secretary of State is aware of the tiny minority who are deeply disturbed arid can be violent. As a result. we have drawn up a 10-point plan which includes a new provision for supervised discharge. I am glad that my noble friend exempts me from taking on the problems over the Border.
I fear that I shall disappoint the noble Lord, Lord Bruce of Donington, as I now turn to resources. But it would be dilatory of me not to set out the Government's commitment, which is to resource community care fairly. The figures show that we have honoured that commitment. The noble Lord, Lord Ashley of Stoke, urged Ministers to gird their loins and take on the Treasury. I can assure the noble Lord that we do not lack courage. Indeed, the Secretary of State won a wonderful victory when she gained £565 million of additional money to be invested in community care in the current year. All that money is ring-fenced which should give a little solace to the noble Lord, Lord Allen of Abbeydale; but I cannot give him the long-term commitment to ring-fencing which he sought.
The new money includes £399 million transferred from the Department of Social Security and a further £26 million for changes to the independent living fund. The additional £140 million, 35 per cent. above the resources transferred from the DSS, represents a considerable achievement. For example, it covers assessing people's needs, giving more support to carers through additional respite and home care arid putting into place the necessary management structures. We have already announced for next year and the year after a special transitional grant of £716 million and £618 million respectively. That makes resources totalling £1,254 million and £1,808 million for each of those years and gives community care the stability that it needs.
In conclusion, community care was never intended to be a quick fix. We cannot promise instant results, but in the six months of implementing the Act considerable progress has been made. As the noble Lord, Lord Rix, so rightly said, the Government did not invent community care.
I am conscious that during the course of the debate I have had to spend much time talking about the mechanisms, assessment, monitoring, funding and so on. They are vital; but they are not the objective. Our central responsibility must always be to meet the needs of people with learning disabilities and their carers. I am aware that there are many hard working and committed people in the field who are determined that some of the most vulnerable members of our society should not be forgotten and that this Act will enhance their quality of life. Among their number I include Members of your Lordships' House. I have no doubt that whoever stands at this Dispatch Box now or in the future will have no peace until services are improved and people with learning disabilities can take their rightful place in society.
§ House adjourned at eleven minutes past eight o'clock.