§ 3.7 p.m.
§ Lord Rix asked Her Majesty's Government:
§ What progress they have made since October 1992 in implementing their policy of providing people with learning disabilities with high quality comprehensive, integrated, local day services in line with their assessed needs.
§ The noble Lord said: My Lords, it is said of a Scottish Presbyterian minister of earlier times that he preached on the same text for 30 years. Thirty years—I should be so lucky! I am not seeking to rival that record but I am 409 grateful for the opportunity to bring the subject of learning disability once again to the attention of your Lordships. Others among my noble friends who are also concerned with disability may choose to widen the discussion. For my part, I am unashamed in my efforts to focus the Government's collective mind on the subject in order to ensure that continuing care and attention are given to the funding, development and operation of the whole range of services needed by people with learning disabilities and by their families.
§ I am in no way denying the case—often similar—of other groups of disabled people. I am quite certain that there will be ample opportunity in the new Session to press the case for disabled people in general, whether it is in a debate on community care or on the proposals for anti-discrimination legislation for disabled people which we hope to find in the gracious Speech.
§ I am delighted to welcome my noble friend Lord Simon who, I know, plans to make his maiden speech this afternoon. I understand that he will concentrate on the transition period between childhood and adulthood—a fraught time for most of us, but particularly crucial for disabled youngsters. We look forward to what he has to say.
§ My noble friend Lord Quirk will mention people with communication difficulties. I recall the important Quirk Report on speech therapy services which came to bear my noble friend's name in the early 1970s.
My question is about day services for people with learning disabilities. I want to know whether the excellent principles that are outlined in the Government's October 1992 circular have been translated into reality. The circular describes day services as:
providing vital opportunities for personal development … having a key role … with a personally planned programme of day activities— social, educational, vocational and leisure—which make use of ordinary community facilities wherever practicable … building on the programmes that have been developed by local education authorities, with input from health authorities, during the school years, to try to meet the expectations of individuals and their families".
§ In short, it offered personal opportunity for choice and development—excellent principles indeed.
§ The inspiration for today's debate comes from a visit that I paid this summer to MENCAP's PIMD (Profound Intellectual and Multiple Disability) section. That section is based in Manchester, where it was first launched. I spent a day with parents in Manchester, visited the facilities and met their offspring. I note reports that Her Majesty has some reservations about Manchester as a location for overseas students. For students with profound and multiple disabilities there is nowhere better than Manchester.
§ I spoke in Manchester to parents whose sons and daughters, as a result of the highly specialised techniques developed by our staff, are riding horses, although it was said that they would never sit up; swimming, although it was said that they would never walk; talking and singing, though it was said that they would never communicate; painting, though it was said 410 that they would never develop the motor skills to hold a brush. The list of achievements by those multiply disabled youngsters is endless.
§ Those parents remarked that the enormous amount of skill and effort that is put into enabling their children to take those steps forward is effectively wasted after leaving school at the age of 19 if there is not a place for them to go which continues to provide the activities, the training, the stimulus, the specialised equipment and all the expertise and facilities that they need to keep on practising acquired skills and learning new ones. Up to the age of 19 there are rights; after the age of 19 there are gaps.
§ One mother who had been to visit three day centres in preparation for her 18 year-old multiply disabled son leaving school said: "I've just realised that we're looking for something that does not exist".
§ Three years ago MENCAP carried out a piece of research into the realities of day service provision. The results were presented in a report that we called Empty Days, Empty Lives. Those results were grim, to say the least. We found a deficit of 20,000 to 30,000 places; worryingly low staff ratios; and 75 per cent. of users with no personal programme for their development.
§ The purpose of today's Question is to emphasise the continuing importance of day services for adults with learning disabilities. My noble friend Lord Tenby will pursue this theme. I want to seek the Minister's assurance that the Government are closely monitoring the implementation of their 1992 guidance. I also want to ask for a report on progress. The Minister will sense that I do not share the view that those who sow the seed can forget about the harvest. I would naturally welcome the assurance that the findings of Empty Days, Empty Lives have been overtaken by three years of progress. But I fear that that is not the case. Indeed, there are many stories of services closing without replacement, or offering only part-time attendance where full-time attendance is needed. Coventry has been quoted to me; and there are many others.
§ Let me make it clear that I am not in the business of disparaging any of the excellent day services that exist. I know, from my colleagues at MENCAP and from my own experience, that there are many fine examples of day services up and down the country. One of my MENCAP colleagues has written to commend the Horley workshop in Surrey. These are services that are geared towards providing high quality daytime support for people with all levels of disability.
§ As I have made my inquiries about the state of day services around the country, I have been particularly impressed by the creative, innovative approach that is being taken in some areas; and correspondingly depressed by zero change or reduced opportunities elsewhere. I am sure that I speak for many parents when I say that my priority is for competent, guaranteed and positive daytime provision for our learning-disabled sons and daughters. We must accept that a break at times during the day both for parents and for sons and daughters is itself of great importance. At the same time I am glad that day services have diversified within and 411 away from the day centre itself, so that putting things into boxes no longer stands on its own as an endless and lifetime routine.
§ One man whom I came across was banned for years from his local council's day centres. A well-meaning member of staff had tried physically to force him to do a packing job that he hated. He punched that member of staff—as I might have done under similar circumstances—and was immediately labelled as violent and excluded from day services. Five years later, he washes cars, has a recycling round and collects furniture and clothes for a local shop. It is that sort of imaginative individual approach that makes all the difference. Imagination and personal choice also feature in leisure provision. The noble Lord, Lord Addington, will take up that theme.
§ However, I know that the picture in other parts of the country is less encouraging. The noble Lord, Lord Rea, will probably mention resources in some places in his winding up. But I must mention that in some places day centres are closing, with no commitment from local authorities to provide alternatives. Perhaps I might encourage the Minister, when she replies, to say in respect of day service places what she has said in respect of hospital places: no closure without a better alternative. In other areas services are threadbare or non-existent. One man in a London borough—let us call him John—spends much of his time collecting and hoarding rubbish from the street. Why? Because John's support worker left a year ago and has not been replaced. This is an individually tailored non-service! Rural areas are often poorly served, too.
§ At Mencap we believe—indeed we know—that people with learning disabilities, just like their non-disabled counterparts, continue to learn throughout their lives. Their potential to change, to learn, to grow and to experience does not stop when they turn 19. It is our responsibility as a community to create the environment that allows them such growth. As part of our commitment to ensuring that each person with learning disability is afforded the maximum opportunity to attain his or her potential, we have recently collaborated with the Further Education Unit to produce Learning for Life. That is a very practical resource book for people who work with those who have the most profound disabilities. Learning for Life starts from the premise that every person has potential and that the challenge to those around him or her is to find out how to support fulfilling that potential. It is a challenge that should be wholeheartedly accepted for practical and moral reasons, quite apart from being pure common sense.
§ One final issue that I wish to raise is that of charging for social care. I shall not say much on this as I know that my noble friend Lord Allen of Abbeydale intends to address the issue. I find it abhorrent that people with learning disabilities are being asked to pay charges of anything from £5 to £12 a week out of their social security benefits for the privilege of attending day services; or have to account for every penny that they receive and spend to show that they cannot afford to pay. We need urgent clarification of existing government guidance on that matter.412
§ At present the amount that people are being charged and the extent to which the costs of their home care needs are taken into account when assessing such charges depend wholly on the local council's interpretation of the guidance. Some areas automatically exempt everyone on income support and other means-tested benefits; others charge against the DLA care component. This is a lottery of poverty.
§ I began by quoting the Government's own description of day services. They used—and I emphasised—the word "vital". Vital means living, growing, changing; it also describes something that you cannot do without. How clear a picture do the Government have of comprehensiveness and vitality? My perspective is of a day service map of huge diversity: many thousands have no day services; thousands more feel that their service is at risk; perhaps most have a service which is good but not good enough. Will the Government use their collective central responsibility for health, social services, education, employment, planning and leisure to give us the world's best day services, just as, I guess, we had the world's first day services?
Nearly 1,000 people with learning disabilities and their parents, who will meet in Blackpool next month for the Gateway/Mencap conference axe eagerly awaiting the answer. So are the many thousands whom they represent. As one mother wrote about her severely disabled daughter:
A life enhanced by the opportunity to fulfil whatever potential we have is everybody's birthright".
§ I cannot believe that there is a single Member of your Lordships' House who would not say "Hear, hear" to that.
§ 3.22 p.m.
§ Baroness Faithfull
My Lords, we all thank the noble Lord, Lord Rix, for raising this very important matter at this time. Perhaps I may also welcome the maiden speaker, the noble Viscount, Lord Simon.
The noble Lord, Lord Rix, asked the Minister for various figures. I too wish to ask the Minister a question. I have not given him notice of it and therefore cannot expect an answer today. As it affects more than one department, I am sure that it would be impossible to have an answer today.
It is many years—perhaps 16—since I worked as a director of social services in Oxford. Therefore I speak about a scheme which existed at that time when conditions inevitably were slightly different. However, I draw from that scheme various positives which I feel should be brought before your Lordships' House.
We had what was called the occupation centre—the workshop —which involved 50 or 60 people. We contacted the Cowley works in Oxford, sadly no longer there. Cowley said that it had various operations on line which were repetitive. I shall not say that those operations sent fully able people round the bend; however, they found it almost impossible to do such a repetitive task and maintain their sanity. It seemed to us that we could cash in on that work and produce a positive outcome. We arranged with Cowley that it should give the occupation centre that work.
413 Those who have worked with severely mentally handicapped people know that they enjoy doing repetitive work. It was my experience in Birmingham that the Cadbury's factory also found that repetitive work was done very well by those whom we are talking about today. Cowley gave us that work. The men and boys from the occupation centre were taken to the factory. They brought the work back to the centre. At the end of the week they were paid—this is very important—in a pay packet by the factory. Therefore they were earning money. They were making an essential contribution to society. Cowley found that of great importance.
We also contacted a factory which made bandages. We were told that for a fully able person nothing is more trying than to be rolling bandages all the time. But many of the people with whom we were working were able to do it. They were very dextrous and did it well. They too earned a pay packet every week. They were making a contribution to society.
Equally, the work produced a social life for people in the occupation centre, the workshop. We did not want people always spending their spare time with the people with whom they were working. The social events we arranged were attended by people from a nearby housing estate. So there was a mixture of people. Strangely enough—I am sure that the noble Lord, Lord Rix, will well understand—many of the people at the centre developed additional skills, were able to work in the factory on more complicated projects and therefore moved on.
One of the great assets was that among those people there was never anyone who was homeless. Those of us who have worked with the homeless know that many of them would be provided in such workshops with a social life. Many of the people from the centre returned to their homes or maintained home contacts. Parents too felt that they could manage grown-up mentally handicapped children if they were out working during the day and bringing in a pay packet; otherwise, many parents found that difficult. Therefore there was the positive result of keeping the family together. The conclusion that I draw is that such occupation centres which are well run make a tremendous contribution to society.
Let me ask the Minister: should such workshops— such occupation centres—be provided by law? If so, how many authorities provide them in England and Wales and how many do not provide them? I have not given notice of that question and therefore cannot expect an answer today.
I support the noble Lord, Lord Rix. This matter is very important for the people with whom we work and for society as a whole.
§ 3.28 p.m.
§ Lord Addington
My Lords, I thank the noble Lord, Lord Rix, for introducing this debate on the problems of those with disabilities, especially learning disabilities, whom we used to call the mentally handicapped. We are in fact dealing with the whole cross-section of disabilities. I am struck with the thought that when we talk about any group of disabled people we also have to 414 talk about dozens of sub-groups and ultimately individuals. All groups are made up of individuals: no two people in any one group are the same.
One of the most important decisions of 1992 was individual assessment. Without individual assessment, the idea of care in the community is totally and utterly flawed. Unless someone receives specific help for an individual problem in his or her own environment, absolutely nothing will be achieved.
A briefing that I received from Mencap states that the subject is like an average-size shoe which fits nobody. We must get this matter right. If not, the whole scheme will not work. Unfortunately, although the concept has been taken on board, there does not seem to have been a great deal of movement towards it. It is not that surprising when one considers just how vast is the task of managing to assess the individual needs of an entire group across the whole spectrum of needs, ranging from those who are slightly IQ-impaired to those with major sensory deprivations. How will we assess their needs and how will we give assistance with those needs? Unless some major steps forward are achieved, we cannot make progress.
We must remember that the individual is a person as well as a set of needs. When dealing with people, especially adults, their personalities develop. They do not take kindly to being put into slots or pigeon-holes. People must therefore be trained in assessment and taught to have an understanding of those who are trying to communicate with them.
The noble Lord, Lord Rix, gave an excellent example of what happens when we treat an adult like a small dog in trying to persuade him to do a repetitive task. The dog will bite; the person ends up hitting out. We will fail if we do not take account of the person, not only his needs but also his background and social context.
The noble Lord, Lord Rix, also introduced into the debate the idea of leisure facilities. I must declare an interest. I am vice-president of the UK Sports Association which deals with sporting and leisure activities for those with learning disabilities. I have seen coaching programmes taking place. I have spoken to coaches. The variety of problems with which they have to deal is enormous. The major difficulty is helping people to concentrate for any length of time.
There are some incredibly talented athletes. Indeed, two have won MBEs for winning numerous medals in Paralympics and other special Olympic-type events. They are people with tremendous natural skills. But if they do not possess the full concentration faculties, they cannot train sufficiently to achieve their full potential. That is why they do not compete in the mainstream sporting sphere. Also, defeat is felt in a certain way and participation becomes more important. A vast range of emotions is felt by large numbers of different types of people. There is a whole range of activities to take account of.
Day services could be extremely beneficial if carried out properly. Many people today cannot find work. I am afraid that automation has removed the need for many repetitive jobs. That may benefit the economy; but it is to the detriment of individuals. Unless we can provide those people with the kind of outlet that sport gives 415 them—training in concentration, the ability to learn from their performance and self-discipline—we shall lose a certain amount of activity. The same kinds of achievement may come from such activities as music. But the wonderful thing about sport is that it not only gives a sense of achievement, but also encourages such things as motor skills —the ability, as the noble Baroness, Lady Faithfull, said, to pick something up from one place and put it in another; the ability to play football properly by co-ordinating feet and hands. Sport also gives people tremendous social skills.
People with disabilities may be given further education after leaving school in such activities as how to co-ordinate their hands when eating in public so that they are able to integrate into society to a further extent. If that skill can be taught during the course of a game or sport, the advantages are obvious.
The current situation has been clouded by something which we would perhaps not have expected to enter into the debate; that is, the reorganisation of the Sports Council which, under the new proposals, is to concentrate on the high prestige events. In the past the Sports Council had a great deal of responsibility for mass participation. The new proposals say:In particular the new body will withdraw from the promotion of mass participation, and informal recreation, and leisure pursuits, and from health promotion. These are laudable aims, but secondary to the pursuit of high standards of sporting achievement".As a sportsman I should have said that those things were basic foundations for the achievement of a high level of sporting activity. High level achievement in this area of sport—that is, involving those with learning disabilities —is absolutely essential. Unless the people who are not able to integrate into normal team games due to their communication difficulties are helped to become involved in some kind of sporting activity, they may find even greater difficulty in becoming involved in leisure and recreational activities.
I appreciate that my questions may have taken the Minister by surprise. If she can respond in writing at a later date I shall be very grateful. I have one final and pleasant duty to perform on this occasion and that is to welcome the noble Viscount, Lord Simon, to this House as a full participating Member.
§ 3.35 p.m.
§ Viscount Simon
My Lords, I am very grateful to my noble friend Lord Rix for presenting me with the opportunity of getting my maiden over, and also to those noble Lords and the noble Baroness, Lady Faithfully who welcomed me.
The problems of the disabled is not an area in which I have vast personal experience, but I have spent some time researching progress and developments over the past few years after being approached by a lady who was worried about her 13 year-old son's prospects. He has cerebral palsy and her main concern was that he would fall prey to the "bean bag syndrome" once formal education ceased; that is, doing nothing more than sitting on a bean bag all day.
My interest lies particularly in the transitional period when a young person with disabilities leaves full-time education, having had the opportunity to develop 416 socially and intellectually during that time I shall limit my observations to what happens thereafter, when statutory responsibilities are less clear and less co-ordinated, resulting in the earlier progress and developments being lost and life then becoming less rewarding than it could perhaps be.
In our youth we are all asked, "What do you want to be when you grow up?" Perhaps some might even wish to become Members of your Lordships' House. Some do end up pursuing their childhood ambition; many do not. Instead, we are more likely to seek employment offering skills and training which will further our development in a particular direction, having sought advice from numerous and varied sources. What most young adults seek is to become independent and to do something worthwhile with their lives. Unfortunately, that is the stage at which the young disabled adults and their families find those basic expectations difficult to fulfil —largely due to lack of information, support and provision.
Many children with disabilities have gone to special schools and when they leave, at 19 or earlier, they suddenly find themselves at home and it is sometimes only at that stage—or not long after—that they and their parents begin to wonder what happens next. Every young person is different and young people cannot be grouped together simply because they are disabled— they, too, are different in their interests, abilities, hopes and aspirations. However, what we can say is that they may need more support and guidance in both identifying and realising those aspects of their personalities.
Many parents and carers of young people with disabilities are desperate to help, but do not know where to obtain the necessary information. More often than not parents use up all their emotional and physical reserves in dealing with their tremendous responsibilities and simply do not have the energy to look too far ahead. The local authorities have a clear duty to provide such information but many do not do so, at least in a format which is readily accessible. Frequently disabled people, carers and advocates find themselves isolated and having to find out what is available.
Over the past few years community care has seemed to promise all things to all people; but what was in fact being offered was support for elderly people to live in their own homes. However, at the same time large residential institutions for people with mental health problems and physical and learning disabilities have been closed. That was welcomed by the voluntary sector but there was concern that the vital community support would not be in place or adequate for those people— and little has been done to give reassurance. When I say the "voluntary sector", what that really means in the majority of cases is groups of parents, carers and their disabled family members. Those groups are formed when individuals discover in an often fairly ad hoc way that others are facing similar difficulties and they decide to get together for mutual support.
One group of parents, based in London called Kith and Kids, identified post-19 provision as a significant area of worry to them. Many, they discovered, were not aware of their legal rights once their child reached 19 years of age and, where they were, they had difficulties 417 in securing their entitlements. As a result of their work in informing and educating people in their area, national voluntary organisations got involved on a wider scale, and the informal Action 19+ network continues to draw voluntary groups who are trying to understand the legislation and to become better prepared when it comes to speaking with the relevant authorities. These organisations include the Spastics Society, Mencap, Contact a Family, the National Autistic Society and Barnardos and they have been holding meetings around the country for disabled people, parents and carers. The feedback echoes the findings of the Mencap report, already mentioned by my noble friend Lord Rix, Empty Days … Empty Lives, which carries a quote from a parent on its front cover, saying,There's no life after 19 … it's like jumping off a cliff'.The reality, in many places, is that any services after 19 are just not there, never mind being designed to meet individual needs. Day services are often full, with waiting lists of several years, are not available five days a week and are not of a high quality. This is in stark contrast to the many choices we would hope for and expect to have at this point in our lives. Furthermore, the charges being levied for attendance, transport and meals deter people from using the services or cause further hardship to families already encountering higher than average expenditure due to the many extra costs of disability. The cost of not providing the right support results all too often in expensive crisis residential care placement, which is highly inappropriate for the majority of disabled people. They find themselves in an entirely new environment, with people they do not know and being told that this is what they can expect their living circumstances to be for the foreseeable future. For the sake of better planning and attention to individual needs this, surely, is too high a price for all concerned to pay.
While I have mentioned some of the negative aspects of what is available for a young disabled person after leaving school, I would like to acknowledge that it is possible to find good practice in some local authority areas. This is particularly the case where consultation and joint planning is really taking place and where local voluntary organisations are taking a lead role. In one county a voluntary organisation has established a panel of people who provide free help and advice with community care assessments for people with learning disabilities. Elsewhere, the situation is patchy and unco-ordinated and the better services are often received by those who are more articulate and who are prepared to be more pushy. I would like to see some positive national co-ordination and guidance so that young disabled adults will have the opportunities to participate in further education, training and work experience, to move towards independence with the right levels of support for them, and to have a range of choices available for them to decide on the way in which they wish to spend their time. This is available to us: it should be available to them.
418 I am grateful to your Lordships for the patience and understanding that you have given to me today and I hope that my speech will have made some useful contribution.
§ 3.44 p.m.
§ Lord Allen of Abbeydale
My Lords, it is my pleasure and privilege on behalf of the whole House to congratulate the noble Viscount on a notable maiden speech. He comes from a very distinguished family. His father was a highly respected Member of this House over a good many years. I well recall his grandfather as the first Cabinet Minister I ever met. That was in 1935 when he was Home Secretary and I was a rather humble and timid new recruit to his department. It is gratifying, particularly to those of us who speak from time to time on these topics, that the noble Viscount should have felt able to make his maiden speech on a subject affecting so many of our less fortunate fellow citizens. His speech showed great sympathy and understanding and raised some questions, the answers to which we shall listen to with great interest; and I hope that we shall often hear from him again.
Towards the end of his admirable and wide-ranging speech my noble friend Lord Rix touched on the problems relating to charging for the use of day services, and in my brief contribution I should like to concentrate solely on that topic. Unlike other noble Lords who have spoken, it is not an area in which I can claim any great expertise and I hope I shall be forgiven if I make some terrible technical bloomer. I am, though, only too well aware of concern felt by the authorities responsible for day services, by individuals who are actual or potential users and by their families.
One has to begin by looking at the Health and Social Services and Social Security Adjudications Act 1983. What a title for an Act of Parliament! I believe it is known as HASSASSAA to its friends. Section 17 of that Act makes two relevant provisions. First, it authorises, but does not compel, an authority providing a non-residential service for adults to make such charge for it, if any, as it considers reasonable. Secondly, it provides that an individual who cannot afford to pay in full can be let off paying more than it is reasonably practicable for him to pay. Not surprisingly the statute remains silent on what "reasonable" means.
In the past two or three years, more authorities have been introducing charges or upping those they were already making, partly no doubt in the light of increasing financial stringency and more particularly perhaps because the Government are now assuming when the standard spending assessment is set that overall there will be a 9 per cent. income from charging. I understand that perhaps some 70 per cent. of authorities now make a charge. When charges have been introduced they vary quite a bit from authority to authority. The results, inevitably, have been that some users with learning disabilities have given up and that, for others, anxious parents have been struggling to pay charges which they cannot really afford. Some local authorities, for their part, have found that, where most users in their area are on income support or at any rate 419 very low incomes, charges have tended to act as a deterrent and in the end have brought in very little revenue.
The particular problem I am concerned with is that very many of those with learning disabilities are indeed poor and dependent on income support and disability benefits. I suppose that, in view of the provisions of the 1983 Act, which leaves everything to the discretion of the local authority, the simple and universal solution of ruling that no charge should be made for day services for anyone on income support is not on, although there is a powerful case for that course and some local authorities do precisely that.
Through the rather tortuous agency of an advice note for the Social Services Inspectorate which takes some account of findings by the ombudsman, local authorities have been made aware that the Government do not consider that there should be an automatic exemption for those receiving income support or for a whole range of social security benefits. It may be fanciful but it seems to me that there is perhaps a faint whiff in the air of that particularly regrettable feature of the poll tax— that everyone should pay something.
One of the troubles is that local authorities are not social security experts any more than I am and can hardly be expected to know exactly what the different benefits are intended to cover; and they also have to bear in mind that, if people are to be assisted to lead as independent a life as possible, it is counterproductive if charges reduce the individual's disposable income to the point where there is nothing left for ordinary social activities. The more I go on, the more I wonder whether it really does make sense to do other than disregard, say, the care component of the disability living allowance and whether the Government's view really does hold water.
There is also some ambiguity about the role of the authority if the individual, when told about the charges, refuses to pay. The 1983 Act does not put any clear obligation on the authority to take the initiative, but would it not be sensible for there to be a general practice that when that happens the authority should make it its business to find out whether the individual is refusing the service because he or she cannot afford it? I fear that at present that is not always done. Anyway, I believe that there ought to be a duty on local authorities to make sure that all users are told that the charge can be waived or reduced, as the Act provides, if an individual can show that he or she cannot afford it. For the kind of person we are talking about today it is the income of the individual and not that of his family or other supporters that comes into question.
I appreciate that some of the points I have been raising go a good deal wider than the use of day centres by people with learning difficulties. I also appreciate that the Government may feel some reluctance about issuing guidance on matters which the statute puts firmly within the discretion of local authorities, although the Government do seem to have blown a bit hot and cold over this. But it is not easy in this complex area to devise a charging structure which reflects the user's ability to pay, is simple to administer and to understand and is patently fair. Given the wide variations in the ad 420 hoc arrangements which have been made, the ambiguities I have touched on, the fact that individuals are either giving up the use of day services or paying more than they can really afford, doubt as to how far capital should be taken into account and all the rest, could not the Government do just a bit more than they have felt able to do in the past to help? It is all rather a muddle —to nobody's benefit, least of all to the individual with a learning disability.
§ 3.54 p.m.
§ Lord Quirk
My Lords, may I preface my remarks with an apology? An evening commitment, made before this debate was arranged, may unhappily oblige me to leave the Chamber before your Lordships conclude deliberating the very important issues raised by the noble Lord, Lord Rix. I profoundly hope that, in this event, I shall convey no impression of discourtesy.
I would like to focus attention for a few minutes on just one category of disability. The numbers of people in this country afflicted with disorders of communication are very much larger than most of us realise. Estimates that are authoritatively regarded as seriously conservative put these numbers as not less than two and a quarter million. For all of these people, the quality of life is adversely affected: the young are hampered in their education, the mature prevented from fulfilling their career potential. And although the majority are in the relatively happy position of not requiring the services that are the subject of today's debate, most are in need of the time and skill of our speech and language therapists—a small profession with little over 5,000 practitioners.
But within that global total of two and a quarter million, there is a subset for whom the quality of life is almost literally indescribable because they have entirely lost, or have never been able to acquire, the ability to express themselves at all. The College of Speech and Language Therapists estimates this hapless subset as numbering at least three quarters of a million—larger, one is shocked to realise, than the entire population of a major city.
Many—perhaps most—of these unfortunate people are multiple handicapped, enduring others among the disabilities to which the noble Lord, Lord Rix, and several more of your Lordships are drawing our attention today. But amid all these grievous handicaps, the virtually total inability to communicate is particularly crippling: the ultimate, not only for the disabled themselves, but also—painfully, distressingly, exhaustingly—for those who care for them. Language must be seen as superordinate in addressing learning disability. Without words, as Goethe's Mephistopheles puts it, no individual can "enter the templed hall of Certainty": words are essential, that is, if we are to discern order and structure in the world around us; without words, all is protean opacity. Without the words that give them form and meaning, doors and lids and windows are not discrete objects but a smudgy blur; and of course, still more blurred and inchoate are abstracts like hope, fear, pity, exultation, and love—precious emotions which Wordsworth saw as rightfully within the scope of "man's unconquerable mind".
421 Total language disability creates a terrifying isolation and a helplessness which in itself poses serious problems for family and caring services alike. There is the alienation, the danger of denying identity itself, the insidious creation of distance that is reflected in the chilling use of third-person reference (the "Does he take sugar?" syndrome). Confronted by total language disability, our own impotence matches that of the sufferer. Who can dare to imagine the enraged terror that inflames a languageless autistic child?
There are three quarters of a million and the numbers are actually increasing relative to the population at large: and this for at least two clear reasons. Even if we learn to contain the incidence in middle age of stress-related cerebral haemorrhage or of accident-related brain injury (not to mention the incidence among younger men of brain injury through warfare, with which the noble Lord, Lord Campbell of Croy, is very familiar from personal observation), we still face two sources of increased incidence which are themselves ironically the product of welcome improvements in our national health. The one is the far higher survival rate of babies that would in earlier decades have had poor prospects on the "at risk" lists. The other is our far greater longevity, which carries with it a comparable increase in geriatric language loss. If through skilled intervention we can equip the one and restore to the other even a rudimentary language ability, we would blessedly reduce dependence, with not only a significant saving in care costs but—far more importantly—the triumph of conferring dignity and access to personal fulfilment.
More is required, as your Lordships will see that I am implying, than well-resourced day services: necessary enough, in all conscience, but not sufficient for the kind and degree of intervention that would make a real difference. The dedicated speech and language professionals do their best, but it is not just that their numbers are small: more seriously, these grievous language disabilities and their psychoneurological roots are little understood. The real need is for fundamental interdisciplinary research of a high order and for a prolonged period.
In the past half-century, the dental profession has achieved wonders by way of dramatic progress in both remedial and preventive dentistry. Let us find the determination and ingenuity to be as successful in helping people to talk as we have been in helping people to chew.
§ 4.1 p.m.
§ Viscount Tenby
My Lords, I am sure that we are all grateful to my noble friend Lord Rix for tabling this Unstarred Question and thus generating discussion in this most important area. We are additionally grateful to him for all that he does in the entire field of mental health where, quite frankly, he is legendary.
I should also like to add my tributes to those paid by other noble Lords on the maiden speech of the noble Viscount, Lord Simon. He indeed bears a celebrated political name and we look forward to hearing him again often and soon in this House.
422 Your Lordships will be relieved to hear that I do not intend to speak for long at the end of this short debate. This is not a subject on which I have spoken previously in this House and I confess freely that I do not have an array of statistics or a display of case histories culled from all over the country to bolster my case. Up to now I have felt rather too close to the problems involved to present an entirely dispassionate point of view. Here I must confess an interest both as the father of a mentally handicapped daughter and as a trustee of a residential home for mentally handicapped women.
However, the Unstarred Question is also specific. It refers not to the general provision of mental health services but to day services. In that context I can claim some personal experience from 20 years as a day service/day centre parent. I think that most people have now accepted the intellectual and compassionate arguments that are associated with the 1990 Act and the government White Paper Caring for People.
Although there were previous centres of excellence, as I thankfully acknowledge, the concept of drawing mentally handicapped people into the community, of closing down Victorian long-stay institutions and of extending the aspirations and the horizons of mentally handicapped people must be both right and just as we enter the last decade of this century. We must continually seek to extend the horizons of the disadvantaged members of our society—of course we must. At the same time, however, we must recognise the fact, unpalatable though it may be, that for some (perhaps even the majority) those horizons may be unattainable.
Of course, we would like to see as many as possible in jobs under ordinary conditions of employment; of course, we would welcome all living within the community in self-contained units; of course, we would like them all to engage in as many activities as may be possible in our modem society, based on an accurate assessment of individual needs. The plain truth, however, is that many are unable to hold down meaningful jobs and many are unable to live independently within the community. That essential truth must be recognised by government and local authorities alike and adequate provision must be made so that people do not suffer unnecessarily and to ensure that hopes are not dashed or that expectations remain unrealised.
That unhappy reality sits uneasily alongside our entirely laudable aspirations, but it cannot be ignored. It also means, in my view, that day service centres or day centres —call them what you will—must be, at least for the time being, the linchpins of day services. Day service centres could be, and in many instances are, centres of excellence. Rather than closing them down in favour of smaller units—in what in present economic conditions must be an extraordinary gesture of optimism—I hope to see them established throughout the country and not, as now, in a higgledy-piggledy fashion. In them clients can have not only a structured programme, and possibly even some work, but also enjoy a satisfactory and wide-ranging social life.
423 Referring to the interesting and powerful words of the noble Baroness, Lady Faithful], I am aware incidentally that low-paid, undemanding physical work is now frowned upon officially in day services and day centres. However, I feel that (quite innocently and for the best of motives) such a view is misplaced. Tasks which might be unacceptable, tedious and even frustrating to the ordinary workforce are in my experience quite widely welcomed in day service centres as, of course, are the wages which, though low, are a symbol of the wage earners' value to the community and with which and through which they gain the self-respect which they are seeking. Indeed, nothing that I know of in this brave new world of ours has replaced that need.
To close the day service centres and to attempt to sell off the premises before alternative arrangements are fully in place would be disastrous. I cannot emphasise that point too strongly—so I say again to the Minister, who I know is compassionate and conscientious, that that would be disastrous.
What are those alternative arrangements anyway? It is envisaged that they will consist of small units, linked more closely to their immediate communities. But where is the money to come from to purchase the necessary suitable properties? Furthermore, if the commendable aim of meeting clients' assessments fully is to be realised, costs (particularly transport and staff costs) will rocket—I think that that is the only word that one can use. Who will foot the bill at a time of stringent cutbacks? It is now, I believe, generally accepted that care in the community is costing, and will continue to cost, more than services cost in the past. If the new regime is to work properly, that must be so.
We have already heard disquiet expressed, particularly by my noble friend Lord Allen of Abbeydale, at the possibility of charging for attendance at day centres. Some authorities already do that and most are at least examining the possibility. I have to say that when I attended a meeting at which that matter was discussed many of the carers present said that that would result in many of the clients not attending, for of course nearly all were on benefit. Such an outcome would be deplorable.
I believe accordingly that this is an area where government must take a lead and not leave such decisions to the whim of local authorities. Furthermore, in that context I should add that if—heaven forfend that it should come to pass—the decision is taken throughout the country to go for single unitary authorities at the expense of existing county councils, we may have the spectre of one day centre becoming a football between as many as three different authorities. That is a thought which quite frankly freezes the blood of all carers.
Perhaps I may close by paying a tribute to the thousands of men and women in both the public and private sectors who perform their difficult tasks with compassion and dedication. In the final analysis, how we handle these matters is a measure of how civilised a society we are. It is right that we should be imaginative and continually breaking new ground, but that innovation must always be tempered with an 424 appreciation—not always apparent in these present rather febrile times—of what experience has taught us is good and valuable practice.
§ 4.11 p.m.
§ Lord Renton
My Lords, I had intended to speak in the debate, and put my name down last week, but as I have been rather under the weather for a few days I withdrew my name. I hope that your Lordships will allow me to say just a few words. I am glad to see my noble friend Lord Whitelaw in his place, because it was when he was Home Secretary and I was chairman of MENCAP that I had to write to him to ask whether the National Society for Mentally Handicapped Children and Adults could become the Royal Society for Mentally Handicapped Children and Adults. He used his influence in the right quarter and that was achieved.
I am pleased that the noble Viscount, Lord Tenby, referred to the thousands of dedicated people all over the country who give their help to the mentally handicapped. From the Queen Mother downwards, they are wonderful people. I share with the noble Viscount the position of being the father of a severely handicapped child. I share with him also my enthusiasm for the kind of place where she is looked after. There is a great deal to be said for those village communities and I hope that the Secretary of State for Health, upon whom some pressure has been exerted by my noble friends Lady Cox and Lord Pearson and others, will realise that it is in those village communities that a great deal can be done for those who are mentally handicapped.
I hope your Lordships will forgive me for continuing to use those words, but we must realise that the expression "learning difficulties" is exceedingly vague. Nearly everyone has a learning difficulty, as I have said before. I would give my soul to the devil if I could play the piano with more than one finger. I have tried hard and I cannot.
This has been an impressive debate. I was glad that the noble Lord, Lord Rix, who became secretary general of MENCAP when I was chairman, initiated it, and did so with the tremendous knowledge that he has acquired. I should like to join in the congratulations to the noble Viscount, Lord Simon. Not only did I know his father in the House, but his grandfather, the first Viscount Simon, was helpful to me in my early days at the Bar, and very encouraging when I was a Liberal, and later a National Liberal which, like his grandfather, I became. We all enjoyed his maiden speech. He made a positive contribution.
There is no doubt that the special education of mentally handicapped young people of school age has improved enormously over the past 20 years. That is true not just of the special education of the mentally handicapped but of the blind, the deaf and of others. However, as the noble Lord, Lord Rix, pointed out, we have not yet done anything near enough to secure the activity, the employment when possible, and the living arrangements for mentally handicapped people as they leave school and grow older. Their parents do not always survive that long.
425 We have been presented in the debate, and in the valuable contributions made to it, with what is a serious social problem. So far as concerns employment, my noble friend Lady Faithful said in her most interesting speech that there are a few who can be employed in factories, but in the nature of things I believe that most mentally handicapped people—if they are capable of being employed at all—are better employed in small organisations.
MENCAP started, near Chichester, a horticultural centre for training mentally handicapped people in such activities. Near Yeovil we started training in livestock, because it so happens that there are mentally handicapped people who find difficulty in speaking to human beings but who can let themselves go when speaking to animals. It is most extraordinary. Incidentally, riding has sometimes helped the disabled to express themselves.
We are living at a time when demand for unskilled workers has diminished greatly in our highly developed technical society where the machine does so much. Perhaps I may give an example. I live near an 800-acre farm, where 40 years ago a dozen farmworkers were employed. Since then the production on that farm has doubled but there are now only four workers. Such a situation prevails right through efficient farming in this country. But that applies not just to farming but to many other activities. That makes it more difficult to get training for mentally handicapped people after they leave school and to find them an occupation. Governments must realise that helping these unfortunate people presents us with a major challenge.
§ 4.20 p.m.
§ Lord Rea
My Lords, I thank the noble Lord, Lord Rix, for his eloquent opening speech—we have come to expect this from him—which was both clear and moving. I wish too to congratulate the noble Viscount, Lord Simon, on his most helpful and relevant contribution. I also congratulate the noble Lord, Lord Rix, on the fact that his Unstarred Question is being debated in prime time. That is practically unheard of!
The Unstarred Question refers to the 1992 Department of Health circular to local authorities. It is a helpful, hopeful and even imaginative document showing that the department's advisers are experts in the field and have taken account of new approaches in relation to this group of disabled people. During the past 20 years it has been found that, with the right approach, people with severe learning difficulties can make a great deal of progress. Page 1 of the circular states:people with learning disabilities are capable of considerable personal development and of making a positive contribution to society. Few, if any, need to live in hospitals".Before discussing the services that are available, it is worth looking at the size of the population concerned. Approximately three people per 1,000 have profound learning difficulties or are mentally handicapped—I believe that we can use that phrase in this House without being politically incorrect. That means that 30,000 are children under the age of 16 and between 120,000 and 160,000 are adults. The lack of precision in those figures 426 is due in part to the fact that it is not always easy to say whether a person should be classified as being moderately or severely disabled. An IQ assessment is not a precise measure. Another reason is the fact that there is no central or local register of cases. Can the noble Baroness tell the House how the size of the population concerned is calculated and how firm is the estimated number? Surely it is difficult to plan effectively when the size of the target population is uncertain.
It is said that the size of the problem may be decreasing because fewer handicapped babies are being born. It is now possible to detect some cases in utero through amniocentesis or chorionic villus sampling which identify the defective chromosomes, in particular those of Down's syndrome. Mothers who wish can have a termination of their pregnancy and try again. More often than not they achieve a normal pregnancy next time round.
Many more handicapped children survive as a result of better ante-natal and neo-natal care, in particular special care baby unit technology. Low birth weight children who would not have survived without such technology present a problem because there is a higher than average likelihood that they will be mentally impaired. However, there is probably not a likelihood of profound mental handicap such as exists in the group that we are talking about. There is, indeed, though a dilemma about applying expensive technology to babies born at 24 to 26 weeks and weighing less than 1 kilogram because there is a higher than average likelihood that they will be handicapped. But that is a diversion. Although the number of babies affected is decreasing, a higher proportion survive into late childhood or adult life. Therefore, we shall have a problem long into the foreseeable future.
I wish to concentrate on one or two passages in the circular. Other speakers have covered many other of the issues. Half the noble Lords who have spoken mentioned the crux word in community care; that is, "assessment". As regards this group of patients, it is particularly important that assessment should be done and done well. A wide range of disabilities make up this group of the population, as was pointed out clearly by the noble Lord, Lord Addington.
Often disabled people have strong likes and dislikes about the type of experiences that they can expect. The noble Baroness, Lady Faithfull, described that most clearly when talking about the man who punched his carer on the nose because he could not accept the kind of work that was offered to him. Those with Down's syndrome, which is perhaps the most common form of handicap, are almost always friendly, sociable, co-operative, loving and like music. However, it can be very difficult to obtain the confidence of some patients who have multiple handicaps. Often there is an associated sensory handicap.
When patients cannot communicate in words it is difficult to assess the severity, for example, of their deafness or blindness. One of my severely handicapped patients was profoundly deaf but yet was bothered by sudden loud sounds. She was most suspicious of new 427 people and, if upset, she could be very destructive towards property in the house. On that issue, the circular states:The individuality of people with learning disabilities should be recognised and the aim in future should be to arrange services on an increasingly individual basis, taking account of age, needs, degree of disability, the personal preferences of the individual and his or her parents or carers, culture, race and gender".The standard solution of an adult day centre every day may not be suitable, although much is being done to vary the activities that they offer. I take the point that day centres are a linchpin, and that means that they should not necessarily be closed because alternatives are opening up.
Imaginative use can be made of other facilities in the area. If done properly, many mentally handicapped people can be taught to function with a degree of independence. The report states:Like everyone else, people with learning disabilities need a range of social skills to be able to contribute to a life in the community and relate to other people. They will often need appropriate opportunities and teaching to gain these skills, improve their social competence and enhance their ability to communicate and relate to other people".All that is a slow process.
Parents often need professional help and encouragement in order to persevere. Day centres, or their equivalent, give parents or adults in a caring role the opportunity to have an independent life and, it is hoped, to carry on with their careers. But some residential units will always be needed for some profoundly disabled people who are too demanding for a normal home. The patient I mentioned was eventually admitted to a residential unit. (In fact, she was admitted to a hospital because no suitable community care unit was available when her behavioural problem became too great for her single mother to handle.)
I wish to ask the noble Baroness for assurance regarding three matters. The circular provides guidance for local authorities. As has been mentioned already, we know that some local authorities are doing a very good job. Parents and relatives of disabled people are being supported and the clients themselves sometimes achieve impressive degrees of independence. But, as has been pointed out also, others are not doing so well.
MENCAP reports a shortage of day centres and the closure of some centres which are still needed. What power do the Government have to ensure that their guidance is being followed? What sanctions, if any, are available? Some local authorities are under much more financial pressure than others. Rate capping may restrict what they might like to do for those with learning difficulties. How much of the finance involved, if any, comes from within the earmarked social security allocation? I doubt whether it is any. Is there a case for more earmarking when there is so much variation within the services which different local authorities make available?
The second point which has already been mentioned and discussed in detail by the noble Lord, Lord Allen, is the variable and somewhat arbitrary decision to charge for day centre attendance. I was going to say that I hoped that the noble Baroness would assure us that that is not applied to people in receipt of means-tested 428 allowances; but I have already been informed by other speakers in the debate that that happens, and that that is; allowed under the rather long-winded Act which the noble Lord, Lord Allen, called HASSASSAA. A better name for it would be "HARASSA" because of its unfortunate results, which mean that poor people are asked to find money, in particular those within and just outside benefit levels.
I am extremely sorry that any charges at all are made. I feel very strongly that that is an area in which the state or local authorities should carry the full costs. Why should families who are already financially affected by having a disabled member be required to pay additional fees when, in more cases than not, they are probably poor? I believe that society as a whole should carry that burden.
Finally, I hark back to my anxiety about the lack of statistical information. What are the Government now doing to collect information on a detailed and uniform basis with regard to: the size of the problem—how many people there are with various levels of learning disability; how those are distributed around the country; and what the social correlations are?
We know that the proportion of people with mild learning disabilities is much greater at the lower end of the social scale. That has been attributed to poor maternal nutrition, alcohol, smoking and lack of stimulation and care. With adequate stimulation and time it is possible to teach people with mild learning difficulties to acquire the social graces. They can often pass for normal people in most social situations. In fact, that is so much so that it is quite possible that members of another place have acquired the social graces to get there. In this House, of course, hereditary peers do not need to acquire the social graces; they can just come here. However, notwithstanding that, on the whole I believe that these social graces are of a higher standard here than in the other place.
Most studies have not shown that social deprivation is related to the more profound levels of learning disability. Perhaps the noble Baroness has more information. It is though clear that the effect on a family with less space and fewer resources of having a severely disabled member must be more severe than the effect on a better-off family. Therefore, it is in relatively deprived communities that services may be most necessary.
This is not an issue affecting any one stratum of society, as has been made clear by speakers this afternoon. Both rich and poor have to handle the burden, and prosperous communities still need services. Are the Government collecting from local authorities the information which we need to ensure that standards are as good as these excellent guidelines propose? If not, will they urgently set up a task force or other unit to collect that information? That would not be very expensive.
§ 4.35 p.m.
§ The Parliamentary Under-Secretary of State, Department of Health (Baroness Cumberlege)
My Lords, I thank the noble Lord, Lord Rix, for initiating the debate today. Despite having no party affiliations, I am extremely conscious that no group is better 429 co-ordinated than the Cross Bench Peers. I suspect that on this occasion such co-ordination was the achievement of the chairman and former secretary general of MENCAP, the noble Lord, Lord Rix. We know that he has been a doughty and effective champion of people with learning disabilities. Following in the footsteps of my noble friend Lord Renton, he has ensured that MENCAP has made a real and lasting difference to the lives of many people by improving their day, leisure and work opportunities. MENCAP's Pathway and Gateway schemes have demonstrated to many of us what people with learning disabilities can achieve. Indeed, schemes such as those were influential in shaping the guidance which the Department of Health issued in 1992 on the development of day services.
I understand the sensitivities about the terminology in this area. On previous occasions I have heard my noble friend Lord Renton say that he prefers the term "mental handicap". But perhaps today I may use the term "people with learning disabilities" as that is consistent with the terms of the debate and it has been used by the noble Lord, Lord Rix.
I pay tribute also to our maiden speaker, the noble Viscount, Lord Simon. The rights and well-being of people with learning disabilities is not a subject for reticence and although a maiden today, I can see that the noble Viscount is no shrinking violet but rather another champion of people with learning disabilities in your Lordships' House. I should like to add my congratulations to him on a very powerful and effective speech.
I suggest that we all pause for a moment to reflect on the fundamental changes which have taken place in recent years in improving the quality of day care. We do not have to go back far in our memories to recall that most day care used to take place in adult training centres which often catered for about a hundred people and were situated on bleak industrial estates—out of sight, out of mind. The units were built on those estates because those who attended the centres were engaged almost entirely in routine contract light industrial work, unlike the scheme described so graphically by my noble friend Lady Faithfull which took place in the Cowley plant and which enabled people with learning disabilities to be part of a proper workforce. Much of that type of work has now been automated and is computer driven. Therefore, we have had to look to alternative experience which encourages new skills, further education or personal development.
Contract work has almost disappeared from day centres unless it gives an opportunity for constructive training and personal development. While I very much appreciate the knowledge and experience of the noble Viscount, Lord Tenby, and agree with him that repetitive work can sometimes ensure a purpose, on the whole we wish to guarantee that those doing the work have the added value of a real experience and also that people are helped to develop as individuals.
As always, I respect the views expressed by my noble friend Lord Renton, especially about the type of occupation and organisation best suited to meet the needs of people with learning disabilities. But having 430 employed a group in—perhaps I may use the expression—my other life, I know what a conscientious workforce they can become. However, I suspect that the majority will use day centres and it is those centres that are changing. They have to change since they cater now for a much wider range of person. It is not only that the age range has increased, as the users of centres have aged, but also the centres are now providing for people with a variety of needs. Some centres have "special needs units" to provide for those people who are profoundly handicapped. At the opposite end of the ability range, centres are now working with adult education departments, and the employment service and, what is even more encouraging, with understanding and sympathetic employers who provide a rich mixture of work experience and sheltered employment.
These changes are the result of a fundamental shift in our approach on how best to support people with learning disabilities and their families. They are based upon our belief that each individual should have the opportunity of a personal assessment which should result in an individual care plan. The purpose of the plan is to enable the person concerned to reach full potential, to live as independently as possible, and to develop the widest range of personal skills. I am sure that many of your Lordships will have seen people with learning disabilities engaged in work in the community. Many projects are both imaginative and innovative. It is also our policy that people with learning disabilities should enjoy the full facilities of the local community and be free to join in the social life of the area in which they live—to spend an evening in the pub; to worship on Sundays in the place of their choosing; to shop and to join social and sports clubs; to do all the things which the noble Lord, Lord Rix, described so graphically that are taking place in Manchester. Some are very modest aspirations which the rest of us take for granted.
I agree with the noble Lord, Lord Addington, that sport has not only enriched the lives of many people but that it also gives them an opportunity to develop a range of other skills. Having witnessed members of the Paralympic team, I was bowled over not only by their control but also by their confidence and skills. In this case it was on the trampoline, The noble Lord may like to know that the Social Services Inspectorate is at this moment undertaking an inspection of the use of community resources for leisure and recreation in the five social services departments. Perhaps your Lordships will be particularly interested to learn that people with learning disabilities have been involved in the planning and the execution of this inspection. I can assure your Lordships that increasingly community organisations such as Gateway and those responsible for leisure facilities have realised and have encouraged this movement towards full integration within their local communities.
Between November 1993 and January 1994 the Social Services Inspectorate in conjunction with the NHS Executive conducted a special study looking at learning disability services in six areas. Although the authorities visited were still providing some traditional day care, most were attempting to move to what we might 431 describe as a "resource centre" model, offering a wide variety of provision, and working successfully with other agencies and in the operation of Pathway schemes.
Of course not everyone will find all their needs met in day centres. For that reason we are encouraging a wider range of opportunities. For those who do not attend a day centre some other support should be available. For example one authority now runs a "breaks for leisure scheme" offering a support service to people between the ages of 18 and 25. In another authority two specialist teams have been set up—a "flexi team" which provides a service on a sessional basis to people with complex needs and a transition team which provides an outreach service to people who can travel independently. These are only two examples, but we know that by linking with other agencies it is possible to develop a wide number of opportunities in education, recreation and work experience.
Our experience leads us to be encouraged by developments which are taking place in a number of authorities, developments which are based upon much closer working relationships with the departments of education, health, housing, leisure and employment. Of course some authorities have made more progress than others and we continue to monitor. In 1992 we changed our method of data collection to make it more sensitive to the types of services being provided. I can assure the noble Lord, Lord Rix, and the noble Lord, Lord Rea, that the new method monitors the number of place days available. We do this by taking a sample week in late September. In the sample week in 1993 there were 259,000 place days compared with 236,000 in 1992, an increase of just under 10 per cent.
Expenditure on day services for people with learning disabilities has been growing at a faster rate than expenditure on personal social services generally. Local authorities financial returns show that in the four years between 1987 and 1991 gross expenditure on personal social services increased by 20 per cent. whereas over the same period gross expenditure on adult training centres increased by 37 per cent. in real terms and by 157 per cent. on other day services. That is an impressive record.
Without a doubt the most radical change has been in the emphasis on assessment of individual needs and of the development of a personal care plan. Of vital importance in all this is the experience and the contribution of parents and other people involved in caring. We also encourage the views of other professionals, GPs and so on, in order to complete the picture of an individual's needs and that person's capacity for further growth and development.
By focusing on the needs of each individual, authorities can assemble a more accurate picture of what is required and how those requirements can best be met. We have made clear to authorities that the assessment procedure should be as simple, quick and non-bureaucratic as possible so that people get the care they need when they need it. For the first time some authorities are setting standards for the time taken to carry out assessments and for service delivery. We welcome this and encourage others to follow suit.
432 The noble Lord, Lord Addington, and the noble Viscount, Lord Simon, also raised the issue of assessment. I can assure noble Lords that we have undertaken a special study of the way that assessment procedures have so far been implemented. This study took place in June and July of last year. It showed that there was a high level of commitment in all agencies among both managerial and operational staff to make the new assessment procedures work. But despite earlier piloting, they were finding that the pro-formas and the procedures were too complicated and time consuming. A wide consensus was in favour of an earlier streamlining of the process. Nevertheless the new arrangements have been introduced without any major difficulty. People were already benefiting from the assessments that were being carried out and they were backed up by financial responsibility. The underlying principles of the new arrangements were broadly welcomed but they were not always fully understood or translated into practice, underlying the importance of ongoing training to improve the quality of assessment.
The assessment process is used also in the development of the overall community care plan which should be based upon consultation with health and other agencies and, most importantly, parents and other key providers of care. We are committed to making sure that care planning is accessible to all and is not only relevant to today's needs, but will create a more informed operational plan for future services.
The noble Lord, Lord Rix, raised the subject of charging for day services, as did the noble Viscount, Lord Simon, and the noble Lord, Lord Allen of Abbeydale. The Government consider it reasonable that those who are able to pay for day, domiciliary and respite care should do so. If this income from people who do have sufficient resources to contribute is forgone, then an authority may have to restrict the amount of services it can provide to all users or potential users. In exercising the discretion they have, each local authority should devise a system that is reasonable and affordable and which will not cause hardship. Those who find it difficult to meet the charge already have a right to make representations to the authority, who must then consider whether to reduce or waive the charge. We think that this is fair and reasonable. We do not consider that there should be an automatic exemption from charges for people with disabilities or others on benefits.
I can assure the noble Lord, Lord Allen of Abbeydale, that we are not reticent in guiding local authorities. In January of this year we issued an advice note telling local authorities explicitly that they should carry out the measures that I have just illustrated to your Lordships. We also said that authorities should take into account extra expenditure because of disability when assessing an individual's capacity to pay. The noble Viscount, Lord Simon, also mentioned the issue of transition from child to adult services. I know it is a cause for grave concern for many parents.
In planning day services, social services departments need to work closely with the education service, and also with those who can provide employment opportunities for school leavers. I agree with the noble 433 Viscount that it is important that the gains made at school are maintained and developed so that individuals can enjoy as much independence as possible. We are ensuring that local authorities are aware of these issues. With registers now in place, there should be no excuse for insufficient planning.
At government level we have an inter-departmental group on disability which brings together officials from a wide range of government departments to discuss these matters. The Department of Health is also involved in the Further Education Funding Council's review of further education for students with disabilities or learning difficulties.
The noble Lord, Lord Quirk, raised the question of autism. The Departments of Health and Education have funded research into services for autistic people and interventions to help autistic children. The Department of Health also makes Section 64 grants to the National Autistic Society. The noble Lord, Lord Rea, is right in saying that it is difficult to assess exact numbers, not only of autistic children but of people with learning disabilities generally. However, our best estimate is that the position is fairly stable in that although fewer babies are being born with a handicap, handicapped adults are living longer.
The noble Lord, Lord Rea, also asked whether it was primarily for local authorities to assess needs in their areas, and, of course, it is. The requirement to produce community care plans has encouraged local authorities to keep better data. They will need to consult health and education authorities to ensure that their figures are accurate.
I very much welcome the debate because day care services are an important element in helping, supporting and encouraging people with learning disabilities, and also their families. Earlier I invited your Lordships to reflect on the progress which has been made in recent years. Our aim is to ensure that all come up to the standard of the best. I share the vision which was so eloquently expressed by the noble Lord, Lord Rix. Although we have not achieved that yet, social services departments are now providing not only for a much larger number of people with learning disabilities, but also for those with a much wider range of needs.
The noble Lord, Lord Addington, is absolutely right; people with learning disabilities are as individual as the rest of us, and our response to each and every one of them should be on a personal basis.
Day care is not primarily about occupation. It needs to stretch beyond that. It should aim to ensure that each individual can develop to his or her full potential and master the widest possible range of skills, with the fullest possible opportunities in life. Some will have only a limited scope for development, and their special 434 needs must be catered for. But many will go on developing and learning throughout life if given the opportunity to do so.
I believe that we have come a long way in a relatively short time in developing more imaginative, innovative and progressive day care. But we are not complacent. We have monitored where possible, and have seen the benefits to individuals and their families. It is our intention to continue to work with local authorities and others to secure the best for all. We have set out a clear statement of policy, have given guidance on good practice, and shall continue to evaluate progress and publicise good schemes. I welcome the interest, as always, and support of your Lordships in the development of this very important area.
§ Lord Rix
My Lords, before the Minister sits down, perhaps I may ask two questions. The noble Baroness, Lady Cumberlege, said that the department will continue to monitor day services around the country generally. What sanctions are open to the Government, and the department in particular, if those services prove to be poor, as I am sure will be the case in some instances?
Secondly, the Minister said that the charging local authorities should devise a system—and indeed many are devising a system—which is considered to be fair. Again, I query whether the department is monitoring that that system is fair and that charging is not being carried out, as we suspect, on a totally ad hoc basis.
If the noble Baroness, Lady Cumberlege, feels unable to answer those questions now, I should be glad if she would write to me in the fullness of time.
§ Baroness Cumberlege
My Lords, of course I shall write to the noble Lord and give a much fuller explanation. At the moment the Social Services Inspectorate is visiting every single social services department. It is looking into a range of issues, and certainly these are issues which are part of its remit and ones on which we would want them to concentrate. We also have the users and carers group, which brings forward to the department—and to my honourable friend the Parliamentary Under-Secretary of State, Mr. Bowis—issues which parents and carers feel need to be addressed. Therefore, there is a range of measures which we can introduce, but I believe that it would be better if I wrote to the noble Lord with the details.