HANDICAPPED CHILDREN

HC Deb 22 March 1973 vol 853 cc747-62

7.50 p.m.

Mr. GreviHe janner (Leicester, North-West)

I am happy to have the opportunity of drawing attention to the plight of disabled children in the light of the £3 million grant which is now to be made by the Government. I wish on this occasion to turn the spotlight on the children who cannot trace their disability to the drug thalidomide. I am in no way seeking to minimise the courage of those children who have thalidomide disabilities, nor that of their parents, and of course I do not minimise their great need. I wish publicly to pay tribute to those people such as my hon. Friend the Member for Stoke-on-Trent, South (Mr. Ashley), who has been so active in this matter, and also Lady Hoare and all the work which she and her fund have done for thalidomide children. I understand that some 500 families are directly affected by thalidomide and that Lady Hoare's fund looks after 700 children.

There are in total about 400,000 handicapped children and I know that the Government are concerned about all of them. Therefore, I feel it right that the House should examine the £3 million grant and should consider where it is to go, what it can do, how far it can reach, who is to administer it and how.

We must always bear in mind that while there are many children on whom the spotlight can be turned—such as Jimmy Martin, the young boy in my constituency who has one limb and whose case has become nationally known—there are thousands of other children whose cases cannot be publicised in any way. For every child whose case is placed before the public, thousands are dealt with privately.

I appreciate that this subject concerns hon. Members in all parts of the House. We all have these cases to deal with and mostly they are dealt with in total privacy.

When we consider that there are, as I have said, over 400,000 handicapped children under the age of 16, it means that few families in the country are not affected in some way or other by the problem of handicaps amongst youngsters within their ranks. Therefore, it is right that the Government should recognise the importance of the attendance allowance which up to now has been the only form of grant towards meeting the needs of these families. In many cases the allowance is not sufficient and it reaches too few families. It will now reach more families—a move which we all applaud. But, however many people it is given to, it will provide no more than a minimum allowance for attendance upon these unfortunate young people. There is a vast need for all sorts of other help.

The grant of £3 million is welcome insofar as it is a recognition of a need. However, I regard the sum of £3 million as pusillanimous, pathetic, sad and out of all proportion to the suffering of these families. A figure of £3 million is vast when stated as a whole, but when spread among almost half a million children who should be helped it is a very small sum indeed. Therefore, I hope that the Minister will tell the House tonight that this sum is only a start and that the Government have plans to set up a fund which is worthy of this nation on behalf of the disabled children. I hope he will also assure the House that its administration will be undertaken on a logical and proper basis.

The first question we must examine is —to whom will the money go? I understand that the money is to go to severely congenitally handicapped children. A pamphlet issued by The Fund for Families of Handicapped Children tells of a scheme set up by the Government but to be administered independently by the Joseph Rowntree Memorial Trust. It would appear that this excellent trust has taken on a task with which very few would wish to cope, and that an unfair burden has been imposed upon it. If things happen to go wrong in the administration of the grant, I suggest that no blame whatever should be attached to the Joseph Rowntree Memorial Trust.

The fund exists, as the pamphlet says, for families with a child or a foster child born with a very severe disability, or who becomes severely disabled within four weeks of birth." What is a "severe disability" and, indeed, who is to decide this matter? How can we introduce a definition involving degrees of severity? How can one say who is born with a disability when the disability may not become apparent for years after the birth?

Many youngsters suffer from muscular dystrophy, and that disability may not become severe until the child is five or six years old. Will the Minister please inform the House tonight—and through the House the families of children who suffer from muscular dystrophy—whether it is intended that those children whose disability does not become apparent until the child begins to walk are included in the definition of a child born with a very severe disability"? The passage in the pamphlet continues: … although the disability may not be recognised until later". I should like to ask—how much later? What is the time scale, and is muscular dystrophy covered?

I understand that cerebral palsy, which is the disability from which spastics suffer, is usually the result of damage at birth and that a complete diagnosis may take up to four years. Is it intended that spastic children should be covered?

The Invalid Children's Association says that there may be as many as 500,000 children under the age of 16 who are handicapped. How many of these children are expected to benefit from the £3 million? How thin is this meagre ration of kindness to be spread? Within the groups of disabled children which were at one time ruled out by the Minister were deaf children and blind children, but apparently severe disability is now to include not only limblessness but serious deformities, total blindness or deafness and severe mental handicap children.

If total blindness is to be included, why should partially blind children—children who can just see—not be included? I hope that the hon. Gentleman will tell the House. Furthermore, is not a child who can just hear to be regarded as suffering from a very severe handicap, and why should such a child be excluded? What has the Minister to tell the families of children who have very little hearing? Are they to remain totally excluded from grant?

According to the Association of Spina Bifida, there are between 6,000 and 7,000 child sufferers from this complaint. Are we to presume that these children will be included? According to the National Society for Mentally Handicapped Children, there are about 40,000 severely subnormal children. Are these to be included? I presume that mental handicap is regarded as seriously as physical handicap—and, if it is not, it certainly should be. According to the form put out in the pamphlet issued by the Rowntree Memorial Trust, severe mental handicap is included. What is "severe mental handicap" and who is to decide?

It appears that we have no diagnosis of the vast numbers of children who require help, and it is right that people should know at this stage which children are to benefit and in what way.

The Rowntree Trust in its pamphlet says that the fund will open on 2nd April 1973 and people are told, if they think that the fund could help them, to write to the secretary and details will be given.

It is understood that social workers are expected to take charge and advise, that the secretary of the fund will be the administrator, who is the Assistant Director of Social Services, Cambridgeshire and Isle of Ely County Council, and that the trust will be treaty to receive applications from 2nd April from those families who have a severely disabled child aged between 10 and 15 inclusive. Is that correct? Is it only families with severely disabled children aged between 10 and 15 inclusive who will benefit? If so, why? I appreciate that we must start somewhere. Is it intended that the £3 million should be spent on them? If not, how much is to be spent on them and what is to happen to the rest? Surely £3 million is a small sum even for the children aged between 10 and 15.

According to this document, applications should be made by the parents. But we all know that parents rarely know when an application is to be made. Whether an application is for a rent rebate, for an attendance allowance or, indeed, for an adult who is applying for compensation for unfair dismissal, we know that the applicant rarely knows.

The document says: The Trust is required to confine its assistance to those families with a child suffering from a severe disability which is congenital." What is congenital? It is no help to state, as this hand-out does, It is not possible to define these terms precisely. Why should a child not benefit who is injured in a car accident shortly after birth and cannot obtain compensation from a negligent driver? Why should a child not benefit who falls when tiny and is injured and suffers from epilepsy thereafter? Where is the element of fairness which is so essential if a fund of any kind is to be regarded as just and proper?

I understand that the Minister intends, it will be a matter for the Trust on the advice of its professional advisers to decide in any case whether the disability is of sufficient severity, whether physical, mental or both, to render a family eligible for assistance, and whether it is congenital in nature. Is it fair that the trust should have imposed upon it what should be a function of the Government? Why should a separate body have this kind of burden thrust upon it in this way? How can the unfortunate trust cope?

We know already from the defects in the Attendance Allowance Board that even such a body as that, which is totally independent, if Government sponsored, causes grave dismay to hon. Members on both sides of the House. There is a motion standing in my name on the Order Paper with 120 signatures calling for the procedures of that board to be reformed so as to be in accordance with the rules of natural justice.

Is the trust to carry out its functions, as the board does, in secret? Is there to be a right of appeal? Is this another gesture which is so much more apparent than real—a gesture which is totally admirable in concept but which, because of its paucity of administration, may in the long run cause vastly more ill will than it cures?

The document goes on: It will be for the Trust to decide whether in any particular case the economic and social circumstances of the family and the stress imposed on it by the disabled child are such as to bring it within the criteria adopted by the Trust. I suggest that it should not be a matter for the trust. It should be a matter for the public acting through the Department of Health and Social Security which, as we know, is very concerned to help. Have the Government recognised that this gesture is very small and is but a beginning and that the time must come soon when the amount should be increased? How much should the increase be? What should the fund contain?

Professor Peter Townsend and his colleague, Dr. Walker, have estimated that it will cost about 30 times £3 million annually if families are to receive adequate financial support for handicapped children—in other words, about £90 million a year.

This country is not in the finest of financial circumstances. We have a counter-inflation policy. A certain amount of tightening of the belt is to take place. However, this is a compassionate country which is desperately concerned about the welfare of the handicapped. It is a country in which people of all political beliefs are concerned to ensure that children can make the best of their lives and that children who start their lives with less should have the advantages which can at least help them to make what they can of happiness and of the education which they can receive. I do not believe that £90 million a year is a large figure in that context. I do not believe that it would be regarded as inappropriate by any person in this country that a sum of about £1.50 a year per head should be allocated for the care of the worst-off children and, through them, of some of the worst-off families in our society. This is a modest, moderate sum.

If the Government were to announce through the Minister tonight, that this was to be done, it would be greeted with satisfaction through the House. Indeed, we all recognise that the Minister, who is good enough to attend at this early hour instead of the very late hour at which we usually meet on these occasions, takes a great personal interest in these problems. I hope that he will accept the figure of £90 million; and that Professor Townsend is correct; and that the spending of money in this instance will also amount to a saving of money because children who are kept at home are not only happier but they save the community a vast sum.

For every child who is kept at home at a cost of £4 or £5 a week, it would cost £20 or £30 a week for him to live in not nearly such good circumstances in most cases, emotionally at least, in an institution. I trust that the Minister will accept that we should attempt to keep as many children as possible at home not only through the use of attendance allowances but through the use of these new grants. These children and their families should be given maximum independence through the provision of this money. Therefore I hope that the hon. Gentleman will say that this sum is a forerunner of much larger payments to come.

Finally, I ask for an assurance that the Government will do their best to ensure that the administration of the fund is not only fair but manifestly fair. I ask the Minister to look at the definitions which have been placed upon the payment of grants from this £3 million. Is it not grossly unsatisfactory to ask an organisation to administer a fund and to say to it, "It is not possible to define the terms under which the grant is to be given."? Is it not asking for terrible upset and trouble which has been produced by a gesture which of itself is kindly and intended to be generous? Will the Minister indicate to the families of the half-million disabled children in this country what the Government's inten- tions are and how they are to be carried out? May we have an assurance that the small sum of £3 million will grow in time and that it will be administered by an organisation which has public control over it and incorporates a right of appeal in its procedure?

8.10 p.m.

The Under-Secretary of State for Health and Social Security (Mr. Michael Alison)

I congratulate the hon. and learned Member for Leicester, North-West (Mr. Greville Janner) on having secured another opportunity—I am glad to say, at a reasonable hour—to debate the challenge presented to families, to the wider community and not least to the children themselves by severe handicap in childhood.

I want to say two things at the outset. First, although I must set out what we are doing over a wide field to help meet the challenge, I do not want the House to think that I am under any illusion that everything possible and necessary is being done. I concede that there is land to be possessed. The social services have a long way to go yet before they can be said to be fully effective in every direction concerning children but we are making progress and intend to go on doing so.

My second introductory point is that it would be misleading to see the Rown-tree Trust £3 million as anything other than one aspect—and that by no means the most important—of a whole complex of provisions going right across the spectrum of social and medical need. Indeed, it is only the tip of the iceberg. The hon. and learned Member invites us to spend £90 million a year on special provision for children. But even that figure is very small fry in the amount of money that we are already spending. We have plans for extending provision right across the spectrum of need for children, handicapped and not so handicapped, sick and not so sick, going into hundreds of millions of pounds in the current public expenditure period.

However, I want to say something about the Rowntree Trust, because it is on this item in the Vote that the hon. and learned Gentleman has hung the debate, and he made extensive reference to it. In order to assist severely handicapped children generally, who the Government recognise command a special priority, the Joseph Rowntree Memorial Trust has been given an initial sum of £3 million. I must emphasise that I cannot at this stage say whether and how much additional money might be available to the fund. From Monday 2nd April—imminently, in other words—the trustees will be able to make grants or provide services to assist families of congenially handicapped children, whether the handicap is physical or mental or both.

My Department is represented on both the trust's management committee and the consultative committee which provides the expert advice. The Government are additionally bearing the cost of administration of the fund, responsibility for which will be reviewed in three years.

This very day, local authorities have been sent a letter from my Department— the hon. and learned Member has had a sight of it, I think—explaining the procedure for applying to the fund and asking for their assistance both in the provision of advice and in letting the trust know of families who, they believe, need help over and above that which the authorities themselves can provide.

I accept that this is only a start. Adolescents—that is, those of 16-plus— and those whose handicap is not congenital will not be eligible for help, but it should provide some help for families which tend particularly to suffer stress and as such, I believe, it will be warmly welcomed. However, I accept the hon. and learned Member's warning that any partial support made in provision to meet need, as we saw with the attendance allowance, generates at the margin certainly dissatisfaction, sometimes even resentment. But this is the concomitant of progress and we have to accept it.

Although during the first few months the trust will be inviting applications only from families with seriously disabled children between the ages of 10 and 15, it is intended that lower age groups will be included no later than 1st August. The pressure of administering the new scheme is clearly the reason to have to start in phases. While it will normally be for parents themselves to apply, where it is more appropriate the trust itself may offer help directly to families and may assist families and children after they reach the age of 16 where those families have earlier received help from the trust.

The help to be given is designed to complement the services which are already provided by statutory and voluntary bodies, but could include services which it is in the power of the statutory bodies to provide although for some reason they are not providing them. Although this does not relieve local authorities of their statutory duties, the trust may, for example, be able in an individual case to help temporarily until an authority can meet that need.

Above all, the trust intends to administer its scheme with the maximum flexibility. Only in the light of its experience during the first few months will it be able to determine the best way to get the maximum help to those in need in the right way and at the right time. I have no doubt that changes will have to be made in the light of experience.

I am also sure that, apart from the help which will be given, there will be great value in the establishment of the fund in teaching us more about handicapped children and the problems that their families face.

The hon. and learned Member asked a number of detailed questions about the operation of the fund. It is not possible to give dogmatic or specific answers at present because it is precisely the flexibility that we wish to impart to the fund from the outset which makes it necessary not to be too clear and specific. The hon. and learned Member asked whether muscular dystrophy, partial blindness or deafness and conditions such as spina bifida would be included. I can tell him that a member of the Association of Spina Bifida and Hydrocephalus is on the trust's consultative committee. It will be for the trust's professional officers to determine, taking account of the strain on individual families, exactly where the need exists and how it should be met.

Mr. Janner

If that is so, how can the hon. Gentleman explain the phrase in the pamphlet put out by the trust which says, in effect, that only children who are totally blind or deaf will be included?

Mr. Alison

This is a start. If the hon. and learned Member has in mind a particular case that he thinks has fallen the wrong side of the margin, I hope he will let us know. As he will see from material that I shall present to him presently, however, those who are suffering from partial conditions of deafness or blindness have a whole range of services available to them both in the hospitals and educationally which, so far as I know, more than adequately cater for their special needs.

However, if the hon. and learned Gentleman feels that there is a case of partial deafness or blindness, producing such exceptional stress upon the family it may be prelingual deafness, producing great difficulties of communication and resulting in turn in a mental condition which is disturbing the other children in the family, and the sort of situation which gives rise to great concern—perhaps he will let us know and we will bring it to the trust's attention.

As for the trust's remit, although it is in some cases obviously specific, the hon. and learned Gentleman knows about the boundaries, which we want to keep as flexible as we can. This is one reason why I do not want to be too specific in answering the detailed questions. If I can give the hon. and learned Gentleman further information on them, having studied them in cold print, I will certainly write to him to clarify anything which is still unsatisfactorily vague.

I said that the Rowntree Trust Fund is only one of a complex range of provisions even on the cash side alone. Taking the wider range of cash benefit, as the hon. and learned Member himself acknowledged, the focal point is the attendance allowance. Perhaps I may give the latest figures which I am able to produce on the provision we make. I think that in some ways we tend to take this radical innovation too much for granted, but it has had very great significance for the disabled. For example, taking the rates of benefit which are proposed for the autumn uprating, some 20,000 children will be getting £6.20 per week, or about £120,000 per week in all. When attendance allowance is extended at the end of the year, perhaps another 50,000 children will be getting £415 per week, some £200,000 per week in all. This represents a very significant addition to resources available to the families with severely handicapped children.

The attendance allowance was first introduced as an initial step in providing specific cash benefits for disabled people not covered by the war pensions and industrial injuries schemes. The original allowance, now known as the higher-rate attendance allowance, first became payable from December 1971 to severely disabled people who need a great deal of help from another person both by day and at night. The allowance is now extended in stages, by four age groups, to severely disabled people who need a lot of help by day or at night. This must be placed against the modest sum under the Rowntree Trust and represents really massive sums under the heading of the attendance allowance.

I have a great many further facts and figures which I could give about the development of the attendance allowance, but it would be of more value to move from the cash spectrum to other services in kind which have a profound bearing on the needs of handicapped children. For example, in the health, hospital and general practitioner services, advice and help from health visitors, home nursing and other domiciliary health services are of course available to the families of severely handicapped children and to the children themselves, as they are to other families.

One of the main aspects of health service provision for handicapped children is that made by my Department's limb and appliance service. Many improved devices are now being introduced for patients of all ages and are of particular benefit to children. For example, the plastic splints and heel cups developed under departmental auspices at Hartshill Hospital are of special value in correcting and controlling physical disabilities in children. Work supported and stimulated specifically for children includes the development of special equipment for sufferers from spina bifida, cerebral palsy and other diseases undertaken at Shrewsbury, Guy's Hospital and Chailey Heritage.

One particular step which the Government have taken to promote the interests of handicapped children is in what we call multi-disciplinary assessment. The Government have expanded the assessment services in hospital and approxi- mately £1.5 million has been allocated in a special capital programme to build comprehensive assessment centres at 50 hospitals. The Government are emphasising to regional hospital boards that the new facilities should result in truly comprehensive assessment planned in conjunction with local authorities. This means that disciplines of every sort in the medical and social spheres determine the basic needs and requirements of handicapped children.

On mental handicap conditions, which impose perhaps the greatest distress on families, our 1971 White Paper "Better Services for the Mentally Handicapped" set out the deficiencies in the present services and outlined the facilities required. It set out a programme to achieve these, estimated nationally to take 15 to 20 years. In the service of the future we envisage that at an early age in the life of a mentally handicapped child there will be a multi-disciplinary assessment of the needs of the child and the family. This will involve health, social service and education staff as appropriate, the needs being reappraised from time to time.

We recognise that the family will require practical assistance of many kinds, for example home helps, domiciliary nursing, laundry services, day centres, day nurseries and youth clubs, with temporary as well as permanent residential care being available for the mentally handicapped. Education for these children is now provided within the ordinary educational system of the country.

I list some of the services to remind the hon. and learned Member that £3 million in the context of the range of services we are providing in the hospitals and through the local authorities and in the education service is almost a small sum in relation to the vast sums, capital and revenue, made available precisely for those conditions which he suggested were almost neglected until the thalidomide cases occurred. A whole complex of services has been provided by many Departments day by day and year by year over a long period and committed to handicapped children whatever their handicap, physical or mental.

We do not claim that all the services necessary are available at present. We are far from the ideal. There is a lot to do to make up for the neglect of the past. But we have asked hospitals and local authorities jointly to produce plans for developing the services needed and indications of developing services are certainly present. For example, capital expenditure in England on hospital services for the mentally handicapped has risen from £5½ million—at 1972 prices—in 1968–69 to an estimated £10 million for 1972–73. This is an increase in real terms of more than 80 per cent. There has been an enormous spin-off of benefit to children from this great increase. Hospital revenue expenditure on these services increased by 11 per cent. in real terms during 1971–72.

On the local authority front, the number of places under construction in residential homes for mentally handicapped children in 1972 was 142, about 18 per cent. higher than the figure of 120 in 1971. Indeed, local authorities have responded well to the challenge set by the White Paper, and developments are very much in line with what was projected.

The great majority of severely handicapped children are educated in special schools suited to their needs, the largest groups numerically being the more severely handicapped among the educationally subnormal and physically handicapped. Quite a number have multiple handicaps. Each child is placed in school after an individual assessment which takes account of educational, medical and psychological factors, and his or her progress is kept under review. Many of these children have problems of mobility, or need aids in the classroom such as typewriters, tape recorders or teaching machines to enable them to make the most of their educational opportunities. Local education authorities will provide whatever aids are considered to be required for education. There is no stinting of this service, which has been developed consistently and satisfactorily over the years.

Severely handicapped children who attend special schools benefit greatly from the close co-operation which is possible there between staff of different disciplines—teachers, therapists and child care staff—working together in the classroom. The staff are not concerned with only one aspect of the children's needs but help out wherever required. A physiotherapist may join forces with a teacher of physical education in the gymnasium and swimming pool or with a speech therapist helping a child to relax so that he can derive greater benefit from this form of therapy. Many of these children can and do participate in a wide range of activities at their schools, given this kind of help.

Parents have the right of appeal to my right hon. Friend the Secretary of State for Education and Science about the arrangements made by local education authorities for the education of their children. Here again there is a warning mechanism if facilities are inadequate.

The educational building programmes for special schools announced in our White Paper "Education: A Framework for Expansion", published in December last year, will give a very high priority to the needs of severely handicapped children.

I hope that the hon. and learned Gentlemen will see, even from this very quick impressionistic sketch, that though the Rowntree Trust Fund of £3 million is a significant sum by any standards in relation to the needs of the community, placed against the vast scale of public expenditure it is but one additional and welcome element in the continually expanding provision made for handicapped children in hospital, by the social services, or in education, and it must be kept in its right perspective.

Mr. Janner

While this is a very welcome addition, can the hon. Gentleman indicate how much a family which successfully applies for a grant from the fund may reasonably hope to get?

Mr. Alison

Since the services provided may take the form of cash or of provision in kind, it is impossible for me to make a judgment about what the advantage to a beneficiary will be. Obviously that will turn on the number of applicants, the scale or degree of need which is assessed in each case and, in many cases, the extent to which once they have been identified—and they may identify themselves as never having been come across before—a liaison may be feasible with the local authority which hitherto has made no provision for them. It may be that an initial sum will be forthcoming from the fund which will lead to a greater scale of expenditure by statutory bodies—

Mr. Janner

But has the hon. Gentleman given any guidance to the trust? What guidance has it been given about the limits of cash or benefits that an individual family may receive?

Mr. Alison

This is entirely within the flexibility—

Mr. Janner

The hon. Gentleman must have told the trust something.

Mr. Alison

It is not right to set up a consultative body of expert people, including people from the Department, and then for someone in my position to predict in advance the pro rata, pro capita benefit that individual children will receive. I am sure that on reflection the hon. and learned Gentleman will feel that his question does not deserve an answer. The £3 million is available. The consultative committee has been established. Viewed in the perspective of the scale of provision that we are making, the £3 million of the Rowntree Trust Fund will prove very welcome and will bring immeasurable benefit and happiness to families who at present are in very great need.

Question put and agreed to.

Bill accordingly read a Second time and committed to a Committee of the whole House.

Committee tomorrow.