The Multi-Handicapped: Welfare Provisions

HL Deb 26 March 1986 vol 472 cc1455-83

6.54 p.m.

Lord Stallard rose to ask Her Majesty's Government whether they will take steps to improve the level of residential and social service provision for multi-handicapped adults within the community, particularly for those aged 16 to 25.

The noble Lord said: In posing this Question I am only too well aware that the subject merits a much longer and more detailed debate than is possible this evening, but I hope that I shall be able to outline some concerns about the present situation and make some suggestions for improvement.

"Multi-handicapped" in the context of my Question means those people who have both a physical and a mental handicap. They are often the most seriously handicapped people in our society. The problems facing those people have been brought to my attention by, among others, the Spastics Society, which, over the past 15 years or so, has found that it is working with and catering for an increasingly profoundly handicapped group of people.

The difficulties that multi-handicapped people face are not new, but changes in expectations and science, medical advances and government policy and so on, over the past 20 years have brought them more sharply into focus. In the early days of the welfare state, young multi-handicapped people would have been brought up in, or have been admitted to, long-stay hospitals for the mentally handicapped, large psychiatric hospitals for the mentally handicapped or, for some, the geriatric ward of the local hospital. Like other Members, I can recall some heart-breaking problems arising from such placements when I was chairman of the local health committee and, latterly, as a constituency Member in another place.

The needs of the multi-handicapped were not then generally recognised by the wider community, as they were kept separate from it—almost hidden away—although it is mercifully true that there have always been enlightened and farsighted people prepared to work for the improvement of attitudes, treatment, facilities and resources for the multi-handicapped. The efforts of those dedicated people have produced great changes in community awareness and attitudes to mentally and physically handicapped people as well as changes in expectations among the handicapped themselves. Those people need our continued support, and we should be supporting all in the voluntary organisations and local authorities who work on behalf of the multi-handicapped.

Educational provisions for young handicapped people have also improved tremendously in recent years. The raising of the school-leaving age and the Education Act 1981 have led to an increase in expectation by young handicapped people and their parents. Although a great deal remains to be done, we are all mindful of the advances made so far. But the intensive interest and the resource allocation which exist throughout the school years suddenly evaporate into thin air when the young person leaves school. The All-Party Disablement Group was moved recently to write in a letter to colleagues: the statutory services too often fade away like the Cheshire cat, leaving only a smile.

The problem of school-leavers is already well recognised and documented both inside and outside Parliament. There is a great deal of interest in both Houses. Many interesting discussions have taken place and numerous excellent reports have been published outside Parliament about the problems of school-leavers. The problems are more acute for those people with multi-handicaps, who find it difficult enough at any time, but more so now, to get a job or training and who often have merely to return home to parents and have very little further contact with any of the services.

One way of helping to ease that problem is to ensure that all young people receive the full-time education up to the age of 19 which is their right. Some local education authorities appear to be dragging their feet in that respect. My first suggestion to the noble Baroness is that she should request her right honourable friend the Secretary of State to consider issuing a circular to local education authorities reminding them of their obligations under the Acts to provide that education.

I would go further. We ought ultimately to be examining means of extending that right to the age of 25 for young people with special needs. This happens in some other countries—for example, in Australia, I know it has been argued that that would merely put off the problem of what happens after school, but I am convinced that those extra years would make tremendous differences to that group of young people, particularly, in essential communication skills. That would be of invaluable help in equipping them to deal with their adult years.

During school years, these youngsters are in contact not only with education services, but also with health services and therapy services. A recent research study carried out by Spastics International Medical Publications revealed some horrifying cases of young handicapped people who have had little or no contact with social or health services since leaving school. All the cases cited were within two or three miles of the Palace of Westminster and I need give only one example to point to the problem. I quote from the Spastics Society's records: S.T. is a severely physically and mentally handicapped 20 year-old man. He is totally dependent on his severely depressed mother who lives with her registered sick boyfriend in a first floor council flat. S.T. is overweight and his mum can no longer take him down the stairs in his wheelchair—the lift is always out of order". We know all the circumstances of this case. S.T. is top heavy for the bath hoist and now requires two nurses to come in and wash him every weekday morning. S.T. communicates that he needs something by biting his left arm. Because he has never been taught an adequate communication system, it is difficult to know what he is trying to say to you. The arm he bites has developed a large crusty sore and he has had no treatment at all. S.T.'s home is a very unstimulating environment, he has nothing to do or look at at home, and never goes on holiday with his mum. Although he goes to a local day centre, every week day, it is difficult to see how much he gains from this, without adequate method of communication. S.T. hasn't seen his GP for years, and no longer sees any hospital doctor at all, his only contacts with the caring services are with the occupational therapist at the day centre, the nurses that bath him in the morning, and the three-monthly visit from their social worker". That is not an isolated case. As I said, these cases are all within two or three miles of this place and, so far as I am concerned, they show the need for extra training in the essential communications services, if nothing else. But of course it goes much further.

What I am saying is that we need a full assessment of need for these young people when leaving school. The statement of need which the Government introduced in the Education Act 1981 should be extended into adult life, and I look forward, too, to receiving into your Lordships' House the Disabled Persons (Services, Consultation and Representation) Bill, which was recently introduced into another place by my honourable friend Mr. Tom Clarke. This Bill seeks to carry out what I have suggested by promoting greater co-ordination between the relevant education authority and the social services department, with notification 12 months in advance of when the young person is leaving school.

The Government, as I understand it, sadly are contesting this. They are seeking to reduce the number of contact points suggested between local education authorities and social services departments, because, they say, they fear increased bureaucracy—as though any of us would welcome any more bureaucracy, God knows! But I believe that to have effective planning of services for these young people in adult life the local authority needs adequate warning and discussion. I therefore hope that the Government will drop their objections to the proposals contained in this Bill, and allow it to progress through its Committee and Report stages as it stands, and as it is supported by members of all parties and by all those involved with disabled and handicapped people.

Today, many young multi-handicapped people want to live independently in the community and could achieve this despite their disabilities except for the lack of financial support. I repeat the points I made during the debates on the severe disablement allowance when it was introduced in the Social Security Act 1983. The present cut-off point at 20 years of age for assessment-free claims for SDA acts as a disincentive for young people to stay on in full-time education or to work beyond the age of 20. I had argued that the free cut-off point should be raised to 25 years of age, to give youngsters a reasonable period after finishing higher or further education to test their capabilities in the labour market. I hope that that proposition can be reviewed as soon as possible.

Those youngsters who might be claiming supplementary benefit will find that the new proposals for income support and disability premiums act as a further disincentive to independent living. It would appear to me that the more disabled you are, the more you are likely to lose, and the situation will be even worse for disabled youngsters as a result of the decision to pay lower personal supplementary benefit allowances for 18 to 24 year-olds than for all other adults.

I think I can best illustrate this again by another example from the Spastics Society's files. It is about a young lady who is single, 25 years of age and severely disabled. She has renal failure and is treated by dialysis. She is housebound and incontinent and her supplementary benefit is as follows. Her supplementary benefit as a single householder is £29.50. With her additional allowances for heating, diet and so on she accrues another £23.30, making a total at the short-term weekly rate of £52.80. On the long-term supplementary benefit rate, it would amount to £59.80. On the new income support system, someone in her circumstances will get £30.60 personal allowance and £12.25 disabled persons premium, making a total of £42.85.

So we can see already that, even compared to the short-term weekly rate, the income support payment will be £10 a week less and will fall much shorter of the current long-term rate; it will in fact be something like £17 less. That is bad enough, but suppose this young lady were 23 instead of 25. Her income support payment would now be £24 personal allowance and £12.25 disabled persons premium making a total of £36.25. So, to compare that with the short-term rate, the income support payment is now £16.55 less, while in comparison with the long-term rate it is a staggering £23.55 less. So it seems to me, as I said, that the more severely disabled you are, the greater the income loss. If that disabled person happened to be between the ages of 18 and 24, then the financial situation could be really disastrous.

Young persons seeking residential care in a unit or in a house within the community such as are provided by many of the voluntary organisations may also be adversely affected by the new board and lodging limits if they are multi-handicapped. The new limit for physically handicapped people is £180 per week. The cost of providing care in these units is much more than £180; it can be as high as £380 per week in some cases, and it was expected—and it is largely quoted—that local authorities would be able to top up the difference. But we know that in present circumstances, and with all the restraints and demands on local authorities for funds and for money, this is not happening universally. Some local authorities do, but many do not, and in the places where they do not there is a great deal of hardship. The Spastics Society, again, is making up the difference in a number of its schemes and, as a consequence, is working on a budgeted deficit for all its homes, with obvious possibilities of future problems.

The Richmond Fellowship, which cares for mentally ill people, says that if local authorities declined to make up the difference on all their residents their total shortfall would be £99,000 and, in these circumstances, that is a lot of money for a voluntary organisation. The implications for this service are ominous and, while the DHSS and local authorities argue about who should make up the extra money, it is the youngsters who are suffering. The Government have a duty to review the limits and see whether some alterations can be made to deal with the cases which I have pointed out. Otherwise, we shall be storing up real trouble for the future. In that respect, I recommend the recent report produced by the National Council for Voluntary Organisations entitled The Crisis in Residential Care, where all those funding problems are dealt with in great detail. It is an exceedingly interesting document.

There is no short cut. If we are to face the situation and prevent tragic circumstances developing, then there must be an urgent review of the situation affecting community and residential care and the payments for board and lodging.

What will happen to the young people concerned if no residential care can be found for them—and it is becoming in short supply because of all the circumstances I have mentioned? After their schooldays, they will return home to their families. The stress upon the carers will increase as the young person regresses both physically and mentally. The lack of contact with therapists and health services can lead to increasing physical dependence. Above all, hopes and expectations are dashed. At school they had friends and social contacts, but at home they may be socially isolated because of their immobility or financial difficulties.

Such youngsters may have no chance whatsoever of obtaining a job in such circumstances. There is not even the collection of statistics on such youngsters who are severely handicapped in that way. What else can be done apart from the suggestions I have already made? In winding up, I should like to make two further proposals.

First, I urge the Government, through the Minister, to re-examine the recommendations of the Court Report in considering the establishment of district handicap teams to avoid another problem facing the young multi-handicapped—that of falling into the void of provision between mental handicap teams and physical handicap teams. Secondly, I ask the noble Baroness to persuade her right honourable friend the Secretary of State to consider launching a short-term funding initiative.

It could be something along the lines of the Helping the Community to Care scheme, which we all welcome. I suggest that a figure of £10 million would go a long way to establishing suitable projects. Local authorities and voluntary organisations could make applications to that fund for projects such as capital funding for small residential units, independent living schemes, information and advice.

Such a scheme could help not only to provide much needed pump-priming money but also, very importantly, to draw attention to the plight of the young multi-handicapped. If the schemes were carefully monitored, they might provide useful data for consideration of an alternative approach and solution to the problems we have been discussing. I hope that the noble Baroness will feel able to recommend those suggestions to her right honourable friend. In my view, it would be money well spent, for it would be helping to give such young people a start in adult life that many of them are now denied.

I plead that we may extend the work that is done in schools to adult life. We want to spend money now to save many costly tragedies later. I hope that the noble Baroness the Minister will be able to reply in a positive way to some of my suggestions.

7.13 p.m.

Baroness Lane-Fox

My Lords, I am grateful to the noble Lord, Lord Stallard, for initiating a debate on a subject that is of wide concern, and for his informative speech. It is a problem that is highlighted by progress. Progress can be fiendish in arousing expectations and then failing to deliver. To be encouraged at school, or even just to be a pupil in a plan, does not prepare one for being thrown back at the mercy of one's family, with nothing else in sight. There are excellent residential establishments, and we know of them, and they are of an increasingly promising variety. However, there are not nearly enough places and many who wish to enter them are bound to be disappointed. It is not every school that gives the kind of expert advice that is so much needed at that stage, and so it is then that school-leavers become housebound and even prisoners in their home. The family's load then becomes really tremendous.

As a patron of the Handicapped Adventure Playground Association, I know that where such playgrounds exist they can prove to be a godsend for collecting up handicapped youngsters. The organisers find that when handicapped pupils become school-leavers living at home, if they can be welcomed back to a familiar playground where they have been happy, they tend to give of their very best. Often the families are surprised by the efforts made by their offspring, even if such visits can be made only once a week.

In cases where the youngsters are mentally handicapped, they can become very useful in routine maintenance and construction jobs. It is because the London playgrounds know that there are many such youngsters in their areas who are not yet included that some have been driven to try to hold more youth club sessions.

In considering the country districts, the Gloucestershire special playground has made a point of trying to search out that category of school-leaver, and even those up to 28 years of age. They are keenly aware of the need that has been revealed. They are resolutely trying to finance the transport of such youngsters to and from the playground. They report rewarding stories of improvements among the cases who attend. The play leader is making a special study of cases in Gloucestershire.

The Prince of Wales's Advisory Group on Disability last week decided professionally to investigate the subject of further and higher education for the handicapped school-leaver, to consider what can be done to help. The noble Baroness, Lady Warnock, who is a colleague of mine on that group, very much regrets that she is not able to be present this evening to participate in our debate.

It is extremely encouraging to learn that the National Bureau for Handicapped Students has been engaged in a survey of the numbers in the category under discussion, for the Department of Education and Science. That really is excellent news. I am glad to hear from them that the response to the survey is about 90 per cent. Sadly, however, the survey reveals a very weighty problem.

I know that there are many people who are thinking hard about this problem, but I believe that at this stage all such people in their homes need in addition to realise what is available in their surroundings. It is known that many youngsters of 19 wish to continue their education. Numbers of them are only then just beginning to develop mentally. Most of us know that those situations are not new, particularly if we were ourselves handicapped school-leavers. We can hope that by better information, the difficulties will grow less. Knowing as I do the depth of understanding that is shown about handicapped people by my right honourable friend the Secretary of State, I am reassured that the result of the survey will be for his inspired consideration.

I am sure that all who are present in your Lordships' House tonight would not wish me to delay the House on this day, of all days. I end with a special request to my noble friend the Minister, whose resourcefulness and imaginative ideas are often very much in evidence. Will she consider setting up a system of continuing counselling for the families and parents of handicapped school-leavers? Many families are clueless about existing provisions. That is possibly because they are too tired even to think. They need all available advice on holidays, training, and daily living. They need to know about the right equipment, about benefits, and about actual domiciliary help. They should hear what other recreational facilities there are, and about what openings there are in the arts.

Help and moral support from the special type of adviser, well versed in the ways of the DES, the DHSS and even the Department of Employment, could achieve a great deal. Who knows?—such a service might be established through the existing voluntary organisations. It would certainly be an oasis in a torrid, outlawed desert.

7.20 p.m.

Lady Kinloss

My Lords, the noble Lord, Lord Stallard, has highlighted a series of very urgent problems. As he said, there are many problems of provision in the community for the mentally and physically handicapped and other multi-handicapped persons. It is only possible to call attention to a few of the most urgent.

Among physically handicapped people who are also mentally ill a major problem is their acceptance in establishments intended solely for the mentally handicapped. Of course, this is true vice-versa. This often causes greater distress than need otherwise be suffered. In particular, I understand that there is insufficient provision for younger patients. There is also a series of problems concerning rehabilitation. Very differing skills may be demanded of instructors—or should I say therapists or rehabilitation officers? They seem to me to be a combination of them all.

I am greatly looking forward to hearing the reply of the noble Baroness the Minister. She never fails to bring us great consolation. Can she say whether she considers that there is presently sufficient provision for adequate training of rehabilitation officers for the multi-handicapped? Is it not the case that the Government need to look again at their requirements and how best they may be met?

I invite the particular attention of the noble Baroness to SENSE. That is the short name of the National Deaf, Blind and Rubella Association. Since 1955 SENSE has been calling attention to the problems of the deaf-blind who are living in the community, to the lack of adequate places for appropriate education for them and to the lack of sufficient assessment before they leave units in special schools to re-enter the community.

I understand that it is not known how many are affected by the multi-handicap of deaf-blindness. Would it not be possible to assess them at a very young age in order to get them into specialised units and not in schools with special units for the mentally handicapped or the educationally subnormal, which often occurs at present? This results in their having great difficulty in living in the community and, sadly, they find themselves being placed in hospitals for the mentally handicapped for lack of anywhere else. This may result in their losing any educational skills, or skills with their hands that they have acquired. Can the noble Baroness say what facilities there are for training teachers in this very specialised field? I apologise to her for all the questions I have asked and for any more I may ask. I do not expect her to answer them all this evening.

I find it strange that when the Education Act 1944 listed 10 disabilities that had to be provided for educationally it failed to include deaf-blindness. As I understand it, there is no statutory requirement to provide them with special facilities. Such facilities as now exist are mostly being provided by voluntary organisations in schools for the blind or for the deaf. At Condover Hall for the Deaf in Shrewsbury the Royal National Institute for the Blind has a special unit for a maximum of 30 deaf-blind pupils from 14 to 18 years of age. It is called Pathways. Different local authorities pay the fees.

I know of one case where a young man, now aged 19, was born deaf-blind and brain-damaged because of rubella. As a result of several operations he can now see a little light. He is at present at the Manor House in Market Deeping, near Peterborough, which is a unit run by SENSE for deaf-blind young people. It is a further education and training centre. At the end of his course, when he can no longer benefit by more teaching, he has nowhere to go. His father asks, what then? Where does he go? My Lords, where does he go? Is there not an urgent need to try to find some practical solutions to the problems of such hapless people?

The North-East Essex Health Authority is much to be congratulated. It has a large house in, I think, Colchester where there are 11 people who are blind but with additional handicaps. There are two or three who are deaf-blind. They are all very happy there. They have come from a mental handicap hospital and are between 19 and 40 years of age. That is the only health authority to do this so far. Two others are thinking of it. Could not the Government encourage them to stop thinking and do something positive?

7.26 p.m.

Baroness Fisher of Rednal

My Lords, my noble friend Lord Stallard has clearly spelt out to the House that a caring society must face the issues that he outlined tonight and that some solutions must be found in the immediate future. Those among us who are not able entirely to care for ourselves have a right to humane care and a reasonable quality of life.

I was particularly interested in what the noble Lady, Lady Kinloss, said about Market Deeping. I was privileged to be asked to open the centre at Market Deeping and I have kept in touch with SENSE ever since. For the benefit of the House and for the noble Lady, Lady Kinloss, I add that a new SENSE centre is to be opened in Birmingham and a director has already been appointed. I also concur with what the noble Lady said about Condover. Condover School in Shrewsbury is the only school in the country that will take blind, mentally or physically handicapped children who are also deaf. It does not take any other children; only those who are deaf with multiple handicaps.

I want to concentrate my comments on the needs of the blind handicapped. I reiterate what my noble friend Lord Stallard said about the real reasons for drawing to the attention of local authorities the fact that they have a duty to provide education up to the age of 19 years and to make it much more widely known so that parents can demand that from their local authorities. It is a most important point which the Government should take on their shoulders.

But what happens to children after they have left school? Each of the speakers tonight has said that often complete desperation faces the parents. Parents do not know what to do after schooling finishes and after full-time education ends. They are promised all kinds of support and they hope that that support will continue. However, more often than not they are left alone to cope.

With the blind handicapped this is even more serious, because most of the agencies involved do not know anything at all about visual handicap and therefore cannot be as helpful as they might be. After leaving school the visually handicapped are, more often than not, placed in the local day centres or the training centres. These placements are offered to them but often they are not successful, because the trained staff, although trained to look after the mentally handicapped, have no training with the visually handicapped. They find it much too difficult to cope with persons who have that dual handicap.

The strain on parents of the blind and mentally handicapped is therefore constant and severe. They also suffer under the mobility allowance scheme. The regulations for the mobility allowance scheme—in simple terms and in terms which have been tested—mean that if you can place one foot in front of the other and propel yourself forward you are classed as being able to walk and therefore you make yourself ineligible for a mobility allowance. The noble Lady, Lady Kinloss, touched on this point. Will your Lordships imagine someone who has suffered from rubella, who is blind and deaf, trying to walk along a busy main road? He has no sense at all of sight or hearing; he cannot hear the traffic and cannot see it. Yet such rubella sufferers are excluded from receiving a mobility allowance. Surely the time has come for a full reconsideration of the tests which are applied to the mobility allowance.

I repeat that the strain on families is constant. It goes on day after day; it is severe and taxing of energy. It is those families who so desperately plead for projects which will ensure homes in the community.

I speak with a great deal of knowledge because I am the president of the Birmingham Royal Institution for the Blind. I opened their hospital for the blind mentally handicapped, and I am also working on two national committees for the blind handicapped. Always when I see parents their plea is to have homes in the community. "Initially", they say, "let us have respite homes so that as long as we can care for our children we may do so, but let us have a respite home so that we can have a chance to have a break". I ask your Lordships to remember that very often the blind mentally handicapped child can be the cause of breakdown in a marriage. Very often the mother has to concentrate on that particular young person so that other matters get neglected, and often this becomes too much for the husband. So respite homes are necessary.

As anybody knows who has met the parents of blind handicapped children, they always ask, "What are the long-term facilities which can be provided?" It is always the same question that they ask: "What happens to him (or her) when I am gone?" Everywhere I go, whether it is to a meeting or a conference, this question always comes from parents who are attending the event. I stand there and say, "We are doing our best. We are trying". But that "best" is nowhere near good enough for this category of young people.

As the noble Baroness, Lady Lane-Fox, has said, in most cases the care of the mentally handicapped has fallen into the hands of the specialist agencies and the voluntary sector. Of course the local authorities have also leaned on the voluntary sector—in the nicest way—to make provision in their localities and they support the specialist agencies. But the voluntary bodies are facing a very difficult time. They are finding it almost impossible to discover sufficient charitable trusts to provide for extra capital spending and they are constantly making efforts toward fund-raising so that they can finance extra provision. It is necessary, because they are the agencies which are trying to make places available round the country.

I should like to read your Lordships a question that was put to me at a meeting I attended last week. I wrote it down just as it was asked. There had been something in the press that day about someone's ancestral home. I do not think it concerned a Member of your Lordships' House who is present tonight; I think it had something to do with the National Trust or the English Heritage Society—some body like that which was going to purchase this house at a very great cost. At that meeting, a man stood up and said to me: "If the Government can provide millions of pounds to save an historic home, can't a few thousand pounds be found for small home units for the youngsters whom we are talking about tonight?" I had to say to him that I did not know the answer but that I would make quite sure that I asked the Minister that question; and I do so in this debate tonight.

The kind of provision which the parents of the blind handicapped would regard as ideal would of course be groups of houses catering for blind and partially-sighted multi-handicapped youngsters, because they feel that there is here a great difficulty. They would prefer these houses to be put on a regional basis in various parts of the country so that each of the areas would be covered and parents could keep in touch with the homes. They recognise that it is difficult to have one establishment in each locality because the number of young people would be insufficient to support it.

Of course, they recognise that there is a role for voluntary organisations to help in the development of plans and ideas of this kind, but they also recognise that there is a governmental and local authority role as well. One of those roles of the local authority and the Government has been very clearly spelt out by my noble friend Lord Stallard. It relates to paying the bill for youngsters in these establishments.

Perhaps I may go on very quickly to the provision that is already made by the voluntary agencies for the blind handicapped. They are in a very special category. Two institutions have been mentioned by the noble Lady, Lady Kinloss—one at Poolemead and the other at Market Deeping, which are for those who are both deaf and blind. The noble Lady also will know the Wilberforce Home in York, in which she has shown a great interest in the past, which caters for the blind handicapped. There is also Oakwood at Birmingham.

Of course the establishment which has the largest number of residents—and there is no similar establishment elsewhere in England—is the Royal School for the Blind at Leatherhead, which is no longer a school hut which has still retained that title. It caters for 148 residents. There has been a massive rebuilding scheme and there is a completely new environment. The opportunities offered to persons living at Leatherhead are absolutely amazing. Flats have been provided for them and there is a new surge in the whole ethos of the place in offering not only habilitation but also rehabilitation. When I last visited Leatherhead, the director, Bernard Coote, said, "Will you extend an invitation not only to the Minister but to any of their Lordships who would like to visit us?" It would be a very worthwhile visit. The patron is the Princess of Wales and the president is the most reverend Primate the Archbishop of Canterbury.

Perhaps I may give your Lordships some examples of what is happening. One of the cases that we had before us only last week concerned the difficulty when one is a parent of trying to find accommodation for a blind handicapped youngster. This case concerns a boy who will be leaving school at Easter at the age of 19; he stayed on until then. As he will be leaving the establishment, his parents have been trying for the past 12 months to find a placement for the boy, since it is impossible for him to be cared for at home. With the help of social workers and school-leaver advisers, for the past 12 months the parents of the boy, who is called Richard, have gone all over the country trying to find a place which will accept him. They have tried 20 establishments but have been unsuccessful. No one has been able to offer Richard a place.

It was only on Tuesday of last week that something came up and he is being given a month's try-out to see whether he will be able to settle in this home. Unfortunately, it is many miles from his parents' home. Nevertheless, they will give it a try. Can your Lordships imagine parents trudging round the country to 20 establishments trying to find a placement for their young son because they cannot care for him at home? It is heartbreaking.

What happens if they do not find a placement? Obviously they find themselves in the large mental hospitals. All too often that is the only solution. Always the parent has to make a most difficult decision. Of course, they will be looked after well by the staff in the mental hospitals, and some mental hospitals are trying to extend the opportunities for the blind handicapped. But once they go inside the mental hospital the problem is that there are no opportunities for extending their vision because the mental nurse is not trained for the visually handicapped. Therefore, as the noble Baroness, Lady Lane-Fox said, there is a deterioration in the person.

Blind mentally handicapped residents in hospitals—and there are many of them already in hospital—are certain to be accorded a low priority on discharge into community hostel facilities because they are so highly dependent. So what are we to have in the future? Are we to have not just mental handicap hospitals but blind mental handicap hospitals, because there do not seem to be any facilities other than those offered by the voluntary agencies? I know that all kinds of funding are used to try to overcome the problem, but nobody seems to have the opportunity of giving benefits because of the dual handicap.

In conclusion, I want to make mention of the Southern Regional Association of the Blind, of which I am the president. It has a committee which has been formed to study the needs, the facilities, the staff training and all the provisions for the blind handicapped. All the members of that committee are professionals; many of them have been compiling reports for the Department of Health and Social Security. They have positions in universities or in other professions to deal with the blind handicapped.

They see the need to appoint a development officer for a period of three years to bring forth a report containing possible solutions, which they say as professionals might be a guide to the department in the formation of a future policy for preventing blind mentally handicapped people going into hospitals and for trying to get out of the hospitals those who are already in so that they can take their place in the community. An approach has been made to the Department of Health and Social Security for help with funding, but the response has not been helpful. I hope that the noble Baroness tonight, after listening to what I have said, will perhaps give that application a little more consideration.

I close by saying that the major question of practical importance to the severely mental and blind population is something which was recognised as a serious problem in the DHSS review of 1980. In that review regarding the mentally handicapped, which included the sensory handicapped, it said that they may require the provision of special services. The review states: Further consideration should be given to the need for extra specialisation and services to be provided". That government review was in 1980; then we had one in 1984. It is now 1986, and little progress has been made. These children's parents are struggling and trying to do the best for them and they need hope. It is my sincere wish that the Minister will give us cause for hope tonight; otherwise the situation of these children and young people will be hopeless.

7.45 p.m.

Lord Renton

My Lords, I should like to express my thanks to the noble Lord, Lord Stallard, for initiating this valuable debate and, if I may say so, for the temperate and constructive way in which he has done so. Also, we can be thankful that we have from three noble Baronesses heard most interesting and knowledgeable speeches, and very moving ones as well.

I think one thing on which we can all agree is the need to find out the size of the problem. Most of us know something of the nature of the problem here and there, but at MENCAP, with which I am associated, I am glad to say that for the past year we have been carrying out a research survey—I am told it is the first of its kind anywhere—a national survey which is being conducted to find out the needs of profoundly retarded and multi-handicapped people and the needs of their parents and those who look after them.

A lot is being done by wonderful people in various fields, and the noble Baroness, Lady Fisher of Rednal, has with great penetration told us about what is done for deaf-blind. I look back and remember that at Oxford I had a blind tutor who was a brilliant man, and he taught me much of the law I know. It is amazing what can be done with blind people, whether they have aptitude or not, provided there are enough people to help, lead and teach them.

Before I go further, I ought to declare my interest in this debate, because I think I am the only one speaking in it who happens to be the father of a multi-handicapped daughter, who is aged 31. Therefore, I have some knowledge of the problems which arise, although I must say that my wife and I, in spite of our increasing years, are lucky to have been able to deal with them. It must be remembered that a high proportion of these multi-handicapped adults live at home with ageing parents, and those parents have an increasingly heavy burden. At MENCAP a case has been brought to our notice of parents, both old-age pensioners, who have a profoundly multi-handicapped son aged 25 who is blind. They have only had one holiday in the past 25 years.

Following a campaign by parents, a purpose-built unit has been built in one locality attached to a local residential unit for the handicapped, and this purpose-built unit offers short-term "respite care"—words increasingly used and, although rather strange, perhaps appropriate—for parents with a profoundly multi-handicapped family member. It was found that the staff ratio there was too low and they had great difficulty finding experienced people. There is a need for more of those locally based special units, with a high complement of specially qualified staff.

But I must issue a warning, because about 20 years ago in the MENCAP eastern region of which I was then president, we decided to set up a holiday home on the east coast of Norfolk. We raised funds locally, the local branch of the Lions helped a great deal and MENCAP helped from the centre as well. We set up this home with a view to enabling mentally handicapped children from all over the region to stay in this home for two or three weeks at a time while their parents took holidays. That is a very good thing.

But what happened? We were able to fill the home from Easter to September but we had to pay for it to be run for the rest of the year. So the original excellent intention had to be largely abandoned. We now have it filled with long-stay handicapped children, young people and some adults. I mention this because no one should be under any illusion about the logistics of this excellent idea. There are problems that must be overcome, but they are problems that are there for those who have the desire and the will to try to overcome them.

"Respite care" is mentioned in the second report of the Social Services Select Committee of another place. I wonder whether I may refer to paragraph 171 of the report. It is very relevant to what has been said in the debate. The committee said: We recommend that local authorities give priority to providing respite care sensitive to the varying needs of different people". The committee then refers to a report of what is called the VCHC, but I do not know what that is, when it wrote, as the Select Committee goes on to say: We consider such respite schemes to be cost-effective inasmuch as they may enable young people to remain longer in their natural or substitute home and can also act as preparation for the move from the family home which must inevitably happen when families are unable to maintain care". So the committee says that from the community's point of view such homes would be cost-effective for that reason. We shall have to explore the matter further. Meanwhile, may I say that I join with the noble Lord, Lord Stallard, in saying that I hope that Mr. Tom Clarke's Bill will reach us. I hope that I am not breaching the conventions of Parliament if I say that I hope it will reach us broadly in the form in which it was presented and not in a truncated form that some of us would find unacceptable. I believe also that there is still quite a long way to go before the many excellent recommendations, some of them admittedly costly, of the Select Committee have been implemented. We had a debate on this about a year ago when it was fresh in people's minds. We did not, however, receive quite the response from the Government—indeed, from my noble friend—that we had hoped for and perhaps she can give us a little more encouragement this evening.

I wish to come now to the question of life-long care in residential homes. This is most important. There are, as already mentioned, quite numerous charitable organisations that provide homes of varying size, none of them very big. That is a good thing. They are for long-term care, that is to say, that when parents seek admission for one of their children into the home, if a vacancy can be found, they are given the assurance that the handicapped person will be there for life. This eases the parents' minds. My wife and I have been fortunate in that the foundation of which I happen to be a patron—I was made a patron long after our child went there, so it was not because I was a patron that she was admitted—has accepted our daughter for life in a place where she will be beautifully looked after. These establishments are very expensive to run. They are funded partly by discretionary grants from county councils, paid for by each person.

I should like to ask my noble friend whether she can give us some guidance and help. Sometimes, it is not known which county council should help with the funding. Is it normally to be regarded as the county council where a child, who may have moved away to another part of the country because the parents had a change of job, was first brought up? Is it where the mother, who became a widow, settled, perhaps in another county, after the husband died? Is it to be the county council, if both parents have died, in the area of the home where the child then finds himself or herself? There has been uncertainty about this matter. It has caused worry among the parents of mentally handicapped children whom we know. If my noble friend can give us any indication, it would help.

I must, however, concede that the help given by the county councils is discretionary anyway. And the practice between county councils varies. Most county councils within my knowledge and experience are being very helpful. They realise that it is necessary in the public interest and perhaps in the interest of their own ratepayers, that a voluntary home, a charitable foundation, even outside the county, should be helped in looking after someone who may otherwise be one of their responsibilities. But the matter needs to be clarified, if possible.

There has not so far been any mention, I think I am right in saying, although one noble Baroness referred to it in passing, of a matter in which my noble friend Lady Lane-Fox has shown great interest and has given us great encouragement. It is a question of furniture and equipment for people with multiple handicap. Such people have to spend a large part of their lives sitting in chairs. That does not sound like a very serious problem. But, believe me, it often is so, because people with severe physical handicap sometimes develop abnormal shapes. Our daughter has double spinal curvature and both her legs are misshapen. She cannot walk unless she is held upright. So she cannot get up and just run about. She has to sit in a chair most of her waking life. To find a chair in which she could sit upright and be comfortable was very difficult until we approached the famous College of Furniture in London. Eventually, at some expense, it made a chair which fitted her shape.

This led, incidentally, to my wife being asked to start a charity to make such furniture and to train graduates to do so using the most modern methods. It is called DEMAND. That does not merely mean demanding your money. It means Design and Manufacture for Disability. But using the word "Demand", I can say that there is an ever-increasing demand on the skills that this workshop, now a separate workshop from the college, displays. The Government, under Section 22 of the Chronically Sick and Disabled Persons Act 1970, have produced this month a work entitled Research and Development Work on Equipment for the Disabled. I obtained this only an hour or two before the debate and have not had time to study it in detail. However, it shows that a vast amount of work is going on in various quarters with regard to this. There is no index, which is unfortunate, but it seems to be nearly all work which is going on in universities, hospitals and research and development establishments. So far as I can tell, the study does not refer to the valuable work also being done by furniture manufacturers and by charitable bodies such as the one of which my wife is chairman. The next time that it is published I think that it should be more comprehensive and should have an index. Perhaps my noble friend would take that on board.

Before leaving the question of residential homes I should mention that, besides getting help in respect of individual residents from county councils and other local authorities, those homes are dependent upon their own charitable funds and, to the extent that it is possible, on private trusts formed for individual residents, although that is a relatively rare possibility. To the extent that the Chancellor of the Exchequer has it in mind to be helpful with charitable trusts, it will help the expansion that we all want of those residential homes which are dependent upon them, and in that we can rejoice.

Baroness Lane-Fox

Hear, hear!

Lord Renton

My Lords, I have spoken longer than I expected, but I conclude by saying this. Recreation has been mentioned. One must always give credit where it is due. I have criticised the almost defunct Greater London Council for wasting people's money on some of its films. But quite recently it produced one interesting and valuable film called "A Sporting Chance", which had nothing to do with betting on horse races. The film showed what can be done for people with multiple handicaps by way of gymnastics, physical training, even badminton, wheelchair polo, riding for the disabled and so on. To the extent that the Manpower Services Commission has been helpful in developing riding for the mentally handicapped, for example, and in various other ways, it is only fair, while we are adopting a somewhat critical attitude towards the Government, that we should acknowledge the fine work which the MSC is doing.

8.3 p.m.

Lord Rea

My Lords, as I understand I am the last speaker before the closing speeches and on the last evening before the Recess, I shall try to be brief. I am supporting my noble friend because I am acutely aware as a general practitioner of the great problem which the multi-handicapped have to face and the burden which they impose on their families and all those responsible for their care.

I would say that this Question is typical of the concern which my noble friend Lord Stallard has for those who cannot speak for themselves. He has been a lifelong champion of the underdog both when he was a Camden councillor and later as a Member for Parliament. He was a real friend to many of my patients who took their problems to him. He spent literally thousands of hours listening to them pleading their cause and sometimes going to do battle for them. When his constituency was incorporated into another many of us were very sad. However, I think that everyone in Camden was delighted—perhaps "chuffed" is a better word—when Jock agreed to join us in your Lordships' House.

The kind of person with whom we are concerned tonight is not all that common. Estimates will vary according to where we take our cut-off points as to what constitutes severe disability or severe handicap. Both the noble Lord, Lord Renton, and the noble Baroness, Lady Lane-Fox, mentioned surveys which were being conducted to ascertain the extent of the problem and what is being done for these people. I very much welcome this. I wonder whether the department is assisting with these surveys or whether it has any other research in hand of an epidemiological nature which is trying to delineate the problem. I hope that it is not shying away from this because when these facts are brought out the findings may have financial implications.

Most of the problems about which we are talking are present from birth. They may be discovered then or become evident in early childhood. Some handicaps also occur as a result of an infection, meningitis or encephalitis, and some as a result of accidents. We are talking about people with mental handicaps and many of those are also epileptic. They have greater or lesser degree of motor impairment or sensory defect, as my noble friend has pointed out. These are usually due to some form of brain damage occurring either as a result of a congenital defect or to an influence in utero such as rubella—which the noble Baroness mentioned—or occasionally during birth.

There is ongoing research into many causes of handicap. I should like to mention that embryo research, which is a topic of considerable discussion at the moment, is vital here. Can the noble Baroness tell us whether the department is assisting research into the causes of mental handicap? I know that that is slightly off the topic of tonight's Unstarred Question which is about the services for people with these problems. But it is relevant for us to look into ways and means to prevent this happening in the future. Whatever research is being done, the problem will be with us for the foreseeable future.

The lion's share of care, as every speakers has pointed out, is still being carried out by parents. This should not be forgotten. However, middle aged and elderly parents cannot cope. The noble Lord opposite is perhaps an exception. Even when fully aided, for instance, with adolescents and adults who cannot feed, wash or clothe themselves and who may have behaviour which is more appropriate to pre-school children, no wonder residential care is often needed—care which is demanding and labour intensive.

It is not surprising that the limit on the lodging allowance element of supplementary benefit means that nowhere near the cost of caring for this group of unfortunate people is met when social security is being used to support them. As my noble friend has pointed out, formerly the local authorities concerned would sponsor each handicapped person in homes run by voluntary organisations and sometimes by the National Health Service. As we have heard, that is now being withdrawn and topping-up by local authorities is becoming the pattern over and above the supplementary benefit payments which are available. However, as several speakers have pointed out, along with the cuts in local authority funding that sponsorship is becoming increasingly difficult to obtain.

Therefore, as with other aspects of community care for the elderly and the disabled, there is, as nearly every speaker has pointed out, a very real need for more funds to be made available, probably to local authorities and possibly directly from central government; but as yet we do not know. The money needs to be increased by special earmarked funds for services for the handicapped. As every speaker has said, there have never been quite enough services to cope with the enormous problems which these people pose. Therefore, rather than a decrease in funding, there needs to be an increase to the former levels of provision. Will the Government at least agree to ensure that the topping-up arrangements are guaranteed by the Government centrally so that if necessary they can top-up for these purposes the block grants which are given as rate support?

When the noble Baroness has replied to National Health Service debates on previous occasions her hands have usually been tied when it comes to considering additional expenditure because of the rules which do not allow extra money to be injected into the solution of the problem. Basically, we are asking that previous financial arrangements as regards totals of money should continue and should not be reduced. As my noble friend Lord Stallard has pointed out, a little extra money would be immensely helpful in making the lives of the parents and others who care for this very vulnerable group more tolerable.

Surely, if £1 billion can be found for the taxpayers, then £10 million, which is only 1 per cent. of that gift, could be directed to the least fortunate. I am sure that the noble Baroness knows more thoroughly than I the history of the Conservative Party. However, was it not Disraeli himself who said that the first requirement of good government was to see to the needs of the least fortunate?

8.13 p.m.

The Earl of Arran

My Lords, I should like to apologise to the noble Lord, Lord Stallard, for having entered the list of speakers so late, but I assure the noble Lord and your Lordships' House that I shall make up for it by being the briefest speaker here tonight.

Because of the highly publicised acts of lawlessness that currently exit in this country, it is very easy to forget the many thousands whose plight and whose lot in life is just as severe but whose case is scarcely ever publicised. Although such luckless people abound in all sectors of the community, the purpose of this debate has been to highlight just one of those sectors: those who suffer from being multi-handicapped, particularly those aged between 16 and 25, and those almost certainly whose misfortunes never hit the headlines.

In a report recently made by a local Spastics Society parents' association, it was found that there was still very little in their local authority's 10-year strategy that really looked at the needs of the multi-handicapped. Furthermore, the report also stated that in the whole of the region it looked at, there was virtually no provision for the multi-handicapped adult apart from mental hospitals, and indeed the small amount of hostel-type housing that did exist had long waiting lists.

In addition, there was considerable anxiety that where residents from the local hospitals for the mentally handicapped were being returned to the community, inadequate funding was being provided; that is to say, only £54 per person on average compared with £437 per person in some local metropolitan areas. The Select Committee's report on community care has also drawn attention to the danger of no facilities being available to those being discharged from long-stay mental hospitals. The report also noted that because there was no experience in the borough, no tradition of provision for the multi-handicapped, that meant that there was no reserve of appropriate professional skills, no support structures within the community.

Multi-handicapped people have the same desire to live in the community in suitable residential accommodation as other groups of disabled people, yet it appears that those who are most in need are still those with least provision in some areas of the community. Despite the fact that voluntary organisations offer residential provision suitable for this group of young people, there is still a deeply despertate need for more provision.

A group affiliated to the Spastics Society has planned for some years to build two bungalows in a community setting to provide care for eight severely multi-handicapped people, five of whom are living in the community with parents who are becoming too old to care for them. It is not too difficult to imagine the endless and severe strain that must be forever with families such as these. These parents have raised sufficient funds to build the bungalows and throughout this time they have received the support and goodwill of the local authority. The future residents of the bungalows require a high level of staff care, which means that costs for each person would amount to £380 per person per week—similar in cost to schemes run by the DHSS.

However the supplementary benefit limit for the physically disabled is only £180 per week. The local authority could in principle top-up the difference but has now refused to do so. That means that the only alternative for these people when their parents die or can no longer care for them, is a long-stay hospital—precisely the kind of place the Government are rightly seeking to move young people out of. Where such accommodation already exists, such as the Douglas Arter Centre near Salisbury, which provides places for 14 young people with profound handicaps, the fees are £280, well above the amount allowed by the DHSS but necessary to provide the level of care needed. What will happen now if topping-up money is not forthcoming? The consequence will be that new projects such as this one may not go ahead.

Inevitably, there will always be call upon call upon the government of the day to help meet the needs of those who suffer. Inevitably, for one reason or another some of those calls will be heeded; others will not. If the Government are seriously concerned about the future of multi-handicapped people, which I am certain they are, I ask most humbly and earnestly that they should reconsider these limits at the earliest opportunity, for until that happens the DHSS and local authorities will only continue to bicker over who is to foot the bill, while young people such as I have described will continue to suffer in silence and in waiting.

8.18 p.m.

Baroness Turner of Camden

My Lords, I welcome the opportunity created by the initiative of my noble friend Lord Stallard to contribute to the debate on this important question. I should like to say what an interesting and really moving debate we have had on this subject this evening. There are about a quarter of a million people in the United Kingdom in some form of residential care. Nearly half of them are in homes provided by the voluntary and private sectors. A large number of those people are of course elderly, and the numbers will increase as the numbers of people reaching the age 75 and over increase.

However, this evening we have been mainly concerned not with the elderly—although of course they are a major problem in this area—but with very large numbers of young people who are mentally handicapped, mentally ill, multi-handicapped or spastics, for whom the present situation represents, I believe, a crisis in care.

Since the early 1970s there has been a change in government policy on residential care in favour of moving mentally handicapped and disabled people out of large specialist hospitals and back into the community. That has meant a shift in balance between health authority and local authority provision, which in turn created a substantial demand on local authority services.

I understand that there are about 120,000 people with severe mental handicap in the United Kingdom. In 1969 about 56,000 were living in long-stay hospitals. By 1982 the figure had dropped to 42,000. That is a real improvement: we want to find alternatives to long-stay hospitals.

Although many mentally handicapped people live at home in the care of parents, many more are able to live in residential care in the community. Nevertheless, there is still a great need for more residential establishments, not only for the thousands still in long-stay hospitals, but also for the estimated 10,000 people in the care of elderly parents. We heard some moving reports on that from notably the noble Lord, Lord Renton, this evening. Without support from statutory services a heavy burden falls on the families of multi-handicapped children.

The greatest burden is on women. A recent study suggested that in most cases, apart from infrequent holidays, parents of handicapped people had scarcely a break of more than a few hours in caring for their offspring in a period sometimes stretching over 30 years. More importantly, of 13 families interviewed in a recent study only three had any plans for alternative residential provision when the parents were no longer able to cope.

There has been a growth in residential care since 1975. Local authority homes provided 5,695 places in homes in 1982. This was an increase of 1,550 places in seven years. But a development of these services is sorely needed. Voluntary sector organisations have a history of providing residential care for people with special needs as well as developing new forms of care. Care for those with severe behavioural problems or multiple handicap has often fallen into the hands of the specialist voluntary sector.

The Spastics Society, for instance, cares for those with a physical disability—cerebral palsy—as well as often an accompanying mental handicap. The National Autistical Society caters for those whose behavioural difficulties put them beyond the range of care available in most local authority homes. The voluntary sector is an important ally in the creation of community-based services for mentally ill people, and this includes residential establishments run by organisations such as the Mental After Care Association, the Richmond Fellowship, and local groups affiliated to MIND.

Until relatively recently people in need of care could look to the local authority for assistance. Where a local authority could not provide the right sort of residential care itself it would agree to pay all, or part, of the fee charged by a voluntary or private sector home. The level of income or capital of an individual was taken into account when assessing how much the local authority would contribute. However, in the past few years responsibility for funding has shifted from local authorities and on to the supplementary benefit system.

In 1980 an Act was introduced which regulated the way in which supplementary board and lodging allowance could be paid to people living in residential care. Changes made to the system in 1983 had the effect of publicising the availability of supplementary benefit for residential care. New homes opened, particularly in the private sector, to meet the demand for care, particularly that coming from elderly people. A less desirable feature from my point of view was the growth of private homes operating for profit.

Furthermore, some local authorities faced with pressure to cut expenditure decided to cease funding for people who wished to enter residential care, confident that the supplementary benefit system would fit the bill. The result was a dramatic increase in the amount of money spent by the DHSS, and plainly the Government had to take some action about that. This led to the current situation when in April 1985 a new system was introduced which set national limits on supplementary benefit paid to people divided into categories according to age and type of disability.

Broadly speaking, the limits ranged from £120 in the case of the elderly to £180 for people under pensionable age with a physical disability, with £150 for mentally handicapped, £130 in respect of the mentally ill, and £130 for people suffering from drug or alcohol dependence. It is this system which has created what many believe to be a crisis in care. This has already been referred to by a number of speakers this evening.

As a result major problems now face people wishing to enter residential care who are dependent upon supplementary benefit. First, the limits are too low to cover the cost of care for many elderly people. Most homes caring for the aged charge between £130 and £160. Some 22 per cent. of people over 80 suffer from senile dementia. The cost of caring for this type of resident is said by voluntary organisations to be in excess of £180. Local authorities may "top up" the allowance for people below pension age, but not for those over it.

The Government seem to have based this system on a number of assumptions which I do not think are valid. First, they appear to think that costs are uniform across the country. Plainly this is not so. They are much heavier in London and the South-East. Secondly, that the cost of caring for elderly people is less than that of caring for people under pension age: clearly this is not so, either. Thirdly, that a system of allowing local authorities to "top up" the limits for people under pension age would ensure that the extra costs involved in caring for some people would be covered: this is not necessarily the case. Finally, that there would be no undue hardship or longer-term effects as a result of this system.

In fact the system, as I have said, appears to be leading to some kind of crisis. I draw the information for this from the excellent report produced by the National Council for Voluntary Organisations, to which my noble friend Lord Stallard referred in his opening statement.

There is evidence from the voluntary organisations that the care of elderly people in particular may be adversely affected. The most immediate problem is as a result of the low supplementary benefit of £120 and the fact that local authorities are not able to top this up. A survey conducted by the National Federation of Housing Associations running homes for the elderly indicated that charges are between £130 and £160 with higher fees being charged for caring for frail, elderly people. The supplementary benefit system clearly discriminates against elderly people who become physically or visually disabled after pension age, and a very high proportion of them do. Yet the same rate cannot be claimed as if they had the disability before pension age.

As with the care of elderly people, the cost involved in the care of the mentally handicapped has much to do with the degree of dependency or handicap and the amount of staff help required. Residential provision for this category, however, often costs considerably more than the supplementary benefit limit of £150. At Mcintyre Communities, for example, I am told that the costs range from £150 to provide care for 36 fairly able people, to £324 per week, for eight severely handicapped people in another home.

Other examples can be quoted. They demonstrate that costs rise in relation to the degree of handicap and the amount of care required. Moreover, so far as concerns mental illness, caring for such people—and this has been referred to by a number of noble Lords in the debate—is labour intensive and there is a high "burn-out" rate among staff. Some special projects cost a lot more. The home run by "Turning Point" in Nottingham, for example, costs £345 per week as it takes in former patients of the Rampton Hospital.

The cost of caring for people with physical disabilities is estimated as being in excess of the £180 supplementary benefit figure. Nor is it true to say that local authorities will invariably "top up". As the noble Earl, Lord Arran, and another noble Lord said earlier, the Spastics Society has had to abandon a scheme which would have allowed multi-handicapped people at present living with ageing parents to be accommodated in a new community scheme, because the local authority will not "top up" that cost for some reason or other. That means that the people concerned face long-stay hospitals eventually when the parents can no longer cope, and that is a solution that I am sure everyone wants to avoid. The Spastics Society also says that it currently works on a deficit for all of its homes. Smaller organisations with limited funds are not in a position to do this indefinitely.

An important part of the training and rehabilitation of many people living in residential care, particularly younger people, is that they should wherever possible be able to go out to work. It is part of the process by which mentally-handicapped people, for example, can learn to live in a normal society. It is also important for people who have been dependent on drugs or alcohol. However, work is difficult to find, and when it is it is almost always low paid.

Certainly such people are unlikely to earn enough to pay the cost of the residental care—which of course they still need—where they are living. Local authority sponsorship, which existed before the present system, was flexible enough to be able to cope with this. The supplementary benefit system does not have this flexibility. When someone is in full-time employment and earning more than a basic amount, the benefit is withdrawn. Many voluntary organisations will carry the shortfall rather than see the individual lose out.

But there are problems. To quote from the executive director of one organisation: Work is really important for the rehabilitation process, but if someone goes out to work then we lose out financially because the most they can pay is £50 or £60 leaving us with a shortfall of about £80. At one home in Battersea we have a lot of people who go out to work but we cannot afford to operate an open-door policy there for people who see work as part of their therapeutic programme. We simply cannot afford it". That is typical of many concerned with this work and this type of care; committed and experienced people who have devoted their lives to this type of work on behalf of others who are handicapped and disadvantaged.

The supplementary benefit levels are not just affecting existing residents; they are also barring the way to residential care for many people in need of it. There is evidence that an immediate response from many private homes has been to stop admitting anybody who would be reliant on supplementary benefit. A Hampshire social worker, quoted in the report of the National Council for Voluntary Organisations, says that of the 19 private homes in her area only four are now taking supplementary benefit funded residents.

The result of all this may well be that many people in need of care will be forced either to stay at home with hard pressed families or in long stay hospitals. Families caring for disabled people face increased financial hardship. The family income is often less than it otherwise would be because a member of the family, usually the mother, stays at home and does not take paid employment. There is the increased expenditure involved in the actual caring, frequent visits to hospitals, incontinence aids, increased laundry, special aids and so on. It has been estimated by the Spastics Society that disability in one member of the family could cost as much as 20 per cent. to 25 per cent. of the family budget. It is nearly always the women who are the carers and who bear the burden.

Incidentally, it is about time that we considered the possibility of providing married women carers and cohabiting women carers with some form of caring allowance. We have to come to terms with the fact that caring costs money. The present system is not satisfactory and has led to what many voluntary organisations are referring to as a crisis in care. It is not satisfactory that the cost of caring should be shuffled between the DHSS and the local authorities, and, finally, all too often, it lands on hard pressed families who are often already disadvantaged. It is the poorest and least able to care for themselves who are suffering. We urge a reconsideration of the present system and an increased allocation of resources.

8.33 p.m.

Baroness Trumpington

My Lords, I add my thanks to those of other noble Lords to the noble Lord, Lord Stallard, for providing us with the opportunity to debate this very important subject. I pay tribute, first, to the way he opened the debate, and, secondly, to the Spastics Society which he acknowledged to be his inspiration.

Perhaps I could open my remarks by assuring the House of the high priority which the Government give to services for disabled people generally. The Government have made it clear in guidance issued to health and local authorities, which are the main statutory providers of services for disabled people, that services for the most vulnerable groups in the community, including disabled people, should have priority.

In reply to the noble Baroness, Lady Fisher, I should say that, although it is not practicable to calculate the total amount spent on services for disabled people, overall expenditure on a number of services which particularly benefit them has substantially increased in real terms over recent years. For example, between 1978–79 and 1984–85 expenditure by local authorities in England on residential care for young physically disabled and sensorily impaired people rose in cost terms by 35 per cent., on residential care for mentally handicapped children by 79 per cent., and on residential care for mentally handicapped adults by 85 per cent. With regard to social security benefits, total expenditure on all cash benefits for long-term sick and disabled people in 1985–86 will be over £5 billion. This represents an increase in real terms of over 50 per cent. since 1978–79, of which some £380 million is due to real improvements in the average value of benefits paid.

The noble Baroness talked about the mobility allowance. Decisions on claims for mobility allowance are made by the independent adjudicating authority and there is a system of appeals for those who are dissatisfied with decisions. I emphasise that in view of the independence of the adjudication system neither ministers nor officials of the department can interfere in how walking ability is tested during medical examination or with the decision given on an individual claim. Mobility allowance is not being withdrawn from deaf-blind people. That said, it is recognised that deaf-blind people, and other groups who suffer multiple handicaps can encounter difficulties when walking out of doors and the medical practitioners who examine claimants are encouraged to conduct outdoor walking tests whenever it is practicable to do so.

We also recognise that the problems of disability are increased when a person suffers from more than one type of disability. The multi-handicapped have needs which may require extra facilities or personal care over and above that required by other disabled people. We must be careful that in referring to "the multi-handicapped" we do not lose sight of the fact that they may be mentally handicapped people with additional disabilities or people who have communication difficulties and physical disabilities but who are nevertheless highly intelligent.

Because multiple handicap can involve such a range of different permutations of different types of impairment, the needs of the individual multi-handicapped people are likely to vary very widely. This is one of the reasons why successive governments have been unwilling to impose any sort of minimum standard of provisions in this area. For us to seek to impose minimum standards of service provision could lead to the risk that minimum standards would be treated as maximum standards and thereby inhibit the better development and co-ordination of services that we should wish to see brought about.

The noble Lord, Lord Rea, and other noble Lords and noble Baronesses may care to note that in considering ways in which we might encourage practical improvements in services for all disabled people we have been hampered by the lack of up-to-date information about the numbers, the circumstances and the needs of disabled people. For this reason we have commissioned from the Office of Population Censuses and Surveys a major national survey of disabled people which is currently being undertaken. Results are expected in 1988 and we hope they will provide the basis for a review of existing provisions for sick and disabled people, including the multi-handicapped.

I shall try to answer questions asked by noble Lords: I hope that I can answer nearly all of them. I agree with the noble Lord, Lord Stallard, about the special problems of handicapped school-leavers. The transition from school to adulthood is a difficult state in anyone's life but disabled school-leavers may find it more difficult to maintain existing, or to make new, social links. There has been a great deal of research, including some by the DHSS, and many articles have been written about the problems faced by disabled school-leavers. For those disabled youngsters who have difficulty finding employment, day care provision is important. The department is currently undertaking a limited study of a wide range of day services, adult training or social education centres and further adult education, including up to the age of 19, which I think the noble Lord mentioned—I think he went further, to 25—employment, sheltered employment, leisure and sport, which my noble friend Lord Renton mentioned. A document is to be produced which will provide authorities and others concerned with pointers to types of day services which have been found to be of benefit to the mentally handicapped. I should be grateful if the noble Lord, Lord Stallard, would give me Mr. S. T.'s name and address, if he would like to. I shall gladly take up his case and any others that the noble Lord may have to hand.

In relation to the social security provision, some disabled people will be affected by the Government's proposal for reform of the social security system to simplify and improve the targeting of cash benefits. The main disability benefits are not affected by that review. The Government aim is to achieve in the long term a coherent system of cash benefits for disabled people. Overall, some 200,000 sick and disabled people will be better off in real terms as a result of these changes—nearly half of them by over £5 a week. With regard to the short-term funding, the department already funds a number of short-term projects in the voluntary sector through Section 64 funds.

The noble Lord, Lord Stallard, referred to the need for multi-handicapped people not to fall between the teams dealing with mental handicap and with physical handicap. I am sure that much more attention is now being paid to all the health and other needs of handicapped people. My department's recent report on helping mentally handicapped people with special needs gives valuable advice to authorities on how to assess and meet the needs of multi-handicapped young people. With regard to the Bill, the Tom Clarke Bill, in another place, the Government are still considering the response to the consultation paper and hope to be able to announce their conclusion on the responses to this exercise shortly.

They fully realise the amount of support which this Bill has got but it will be up to local authorities to pay many of the costs which will be incurred under it, and therefore it is only fair to look at it thoroughly. I understand that the Richmond Fellowship, which incidentally is given a large grant by the DHSS, deals with clients suffering from schizophrenia. The Government are very much aware of the difficulties faced by sufferers and families, which have been graphically illustrated by the media recently. We are anxious to see the provision of a range of support services including residential care throughout the country. This range will need to include services that meet the needs of the small number of young schizophrenic people with additional handicaps. Our aim is to provide a comprehensive range of good quality services capable of meeting adequately the special needs of this group.

Perhaps I may return for a moment to the question of education up to the age of 19. This was brought up at a recent meeting with my right honourable friend the Secretary of State for Education and Science. The Secretary of State agreed to look at this matter further. That was a point which was brought up by my noble friend Lady Lane-Fox. With regard to bridging loans (which I think several noble Lords mentioned) the department recognises this problem but central funding is not necessarily the best or the only way for creating bridging finance.

However, the Government are thoroughly reviewing this situation. I recognise the noble Lord's point on topping up by local authorities. We have agreed with the local authority associations to set up a joint working party to consider means of harmonising financial support for people in residential care homes. Additionally, we have agreed to carry out pilot studies to test the feasibility of extending local authorities' existing multi-disciplinary assessment arrangements for admission to their own homes to claimants for supplementary benefit in residential care homes and for local authorities to advise on the appropriate level of payment for particular homes.

The noble Lady, Lady Kinloss, to whom I am deeply grateful—and there is no doubt that I shall have to write to her—spoke about training courses. My right honourable friend the Secretary of State for Education and Science met representatives of the all-party children's group on 20th March with this subject in view. My right honourable friend the Secretary of State agreed to consider the points raised at that meeting on this matter. Perhaps the noble Baroness was present at that meeting.

My noble friend Lady Lane-Fox asked about counselling. I entirely agree with my noble friend that counselling is a very important subject. Counselling varies between local authority areas and is very much a local matter for the statutory and voluntary bodies working together, dependent upon the particular needs of that area. I realise that that is rather a loose answer but it is the best that I can do.

The noble Baroness, Lady Fisher, asked about adult training centres. She spoke about the difficulty the training centres had in dealing with the needs of multihandicapped people who are mentally handicapped. Meeting their needs is difficult, though I know that some centres cope well. We are looking at the whole range of day services for mentally handicapped people and I am sure that this will provide useful advice for the authorities concerned.

Baroness Fisher of Rednal

My Lords, it is important that the noble Baroness puts in the word "blind" so that this may appear in Hansard. She has mentioned the mentally handicapped but she has not mentioned the blind in that group.

Baroness Trumpington

My Lords, I take the point of the noble Baroness and I am sure that her comment will appear in Hansard so that that important word is emphasised.

The noble Lady, Lady Kinloss, and the noble Baroness, Lady Fisher, talked about the training of hospital and other staff in the specialist needs of multi-handicapped blind and the deaf blind. The training needs of the NHS and social services department staff are primarily a matter for the employing authorities locally and decisions concerning policy on training and the attendance of staff on particular training courses must be left to them. So far as specialist training is concerned, my department already funds by 50 per cent. the annual expenditure of the North and South regional associations for the blind who provide specialist training courses for staff working in the field of visual handicap.

The noble Lord, Lord Renton, in his very moving speech spoke of respite care, which I think was the first of his questions to me. I very much agree with the noble Lord about the value of respite care and I am glad to say that authorities are paying increasing attention to this. His second point concerned the Tom Clarke Bill. I have already dealt with that. The third point was the question of there not being enough places in residential care, which my noble friend Lady Lane-Fox has already mentioned. This is a matter for voluntary organisations and provision is increasing.

With regard to the guidance as to which local authority should fund, this should really be a matter for local authorities to settle on a commonsense basis; but I know there is a procedure for settling disputes between local authorities when they cannot agree. I was interested by the College of Furniture in London and, at the same time, I should like to pay tribute to the Disabled Living Foundation for the work that they do for providing equipment for people. I am glad that my noble friend Lord Renton mentioned the very helpful measures for charities which were in the recent Budget.

The noble Lord, Lord Rea, spoke about research into mental handicap. As he will know, my department funds a considerable number of projects on mental handicap. I will write to the noble Lord in further detail on that matter. With regard to cuts, the government limits on local authority spending are based on the need to control their all-services' expenditure. Parities between services are left to authorities to decide. It would be extremely consistent with the Government's approach for reductions to be made with no cuts in personal social services at all if that is what the local authority decides.

The noble Baroness, Lady Turner, mentioned Care in the Community. Although this debate has centred mainly, because of its title, on the needs of the young, it is worth repeating that in July 1984 the Government announced the Helping the Community to Care scheme. We are making a total of £10.5 million available over three years, almost all through voluntary bodies. This is aimed particularly at improving care for elderly people and people who are mentally ill or mentally handicapped by assisting volunteers, families, neighbours and others to care for them more effectively and with greater confidence.

The Government recognise that the particular needs of each multi-handicapped person for health, social and educational provision should be assessed on a multi-disciplinary basis. This should be done at an early stage and monitored and reassessed at regular intervals. Clearly, early intervention is particularly appropriate for young multi-handicapped adults, irrespective of whether they are living in residential care or in the community. The transition from school to adulthood is a difficult stage in anyone's life, and this will of course be an especially fraught time for someone with multiple handicaps. The range of disabilities for multi-handicapped people can require the provision of particular types of services, especially when they are young people attempting to cope with the other pressures of life.

As the noble Baroness, Lady Fisher, said with great authority, the needs of young people who are deaf-blind will not necessarily be the same as those who are both mentally disordered and physically handicapped. So a proper co-ordination of services by both the statutory and voluntary sector is desirable for these clients to enable them to enhance their opportunities to play as full a part as possible in the community. Proper co-ordination of services means proper planning of services. It is this which the Government have been taking active steps to encourage. Progress in Partnership, the report of the working group on joint planning set up by local authority associations, the National Association of Health Authorities and the DHSS, was published in November 1985. We hope that it will lead to rapid progress in developing joint planning and the better use of all available resources.

I realise that probably, despite what I have said, in the eyes of some of your Lordships my role is that of the big bad wolf, or at least of a rather mean grandmother! I hope you will appreciate from what I have said that the Government and the statutory services are taking positive and practical steps to develop and improve the provision of services to young multi-handicapped people.