§ Motion made, and Question proposed, That this House do now adjourn.—[Mr. Bates.]
§ 11.31 p.m.
§ Mr. Clement Freud (Isle of Ely)The situation in respect of handicapped children in this country is strangely anomolous. If a pregnant woman with a two-months-old foetus goes to her doctor, and he suspects an abnormality, the advice is an instant abortion. If a child is born miserably and utterly handicapped everything is done to preserve life and every encouragement is given to the mother to keep the child in a home environment. Of course that is right. What is wrong is how little help the State gives to those whom it deputes to carry out this work.
One does not hear a great deal of complaint about this. The old truism that people do not know what they are missing applies here. Kids raised on Lancashire hot-pot do not yearn for smoked salmon soufflé. Parents do not know what can be done, and nobody tells them that the living hell that a handicapped child has condemned them to can be alleviated.
I am grateful for the selection of this Adjournment debate because it is one that was selected at an earlier date when, unfortunately, I was unable to be here. Obviously it is quite inadequate to have only half an hour to speak on the plight of handicapped children, and I had to decide whether to speak for 29 minutes to make my point, or to take the traditional 15 minutes and await the honeyed words of the Minister. But I saw the Minister, and we came to a decision. He has promised that if I keep my speech short, he will not make the usual tedious remarks about what a good and caring chap I am for raising the matter. I am glad that I have raised it—not for the praise, but to bring it to the attention 1824 of the House and get action from the Department of Health and Social Security.
I accept, as everyone in this country must, that our financial resources are limited. I do not accept that we make the best use of them. I do not accept that people are sufficiently aware of the problems facing handicapped children. If we could make people aware of these problems the miners would make aid for handicapped children a prerequisite to a £100 a week pay claim and industrialists would forgo their golden handshakes until something constructive was done.
In most places—I am privileged to represent a county that is as concerned and as knowledgeable as any in the land—the system fails in two respects. The first is in the provision of medical help to handicapped children. The second, which is almost as important, is in the provision of support for the child's parents.
I should like to take a quick gallop through the issues and explain what is wrong. Let me begin with homes for the handicapped. Perhaps the most important aspect of these homes, which is seldom implemented, is the education aspect. What seems to happen now is that a home is opened and in one year it is full. The same people stay there until they leave for a geriatric hospital. The outwork that those people do, which possibly makes the place self-financing, is also totally decadent. Every time I see the prototype wicker basket something inside me screams out in anguish at the lack of originality and the lack of understanding that has caused some bored teacher to take the easy option.
In this age of specialisation, oddly enough the opposite to specialisation has happened to health visitors. They are the Jacks and Jills of all trades without specialised knowledge of the handicapped. Some visit too often, but most do not visit often enough. Most parents are reluctant to call them, because there is no crisis. There are few crises in terms of the health of handicapped children. Handicapped children are neither better nor worse it is the parent who is worse, and the visitor cannot do a lot about that.
The Department is required by the Chronically Sick and Disabled Persons Act—and everyone should bear in mind the enormous gratitude the nation has to 1825 the Under-Secretary for putting that Act on to the statute book—to keep a register. But the Minister will know that this register is seldom anywhere near complete. Let me read an extract from a letter sent by the Secretary of the Eastern Counties Society for Mentally Handicapped Children. He says:
Families may not know of statutory social services and vice-versa, or may not have confidence in them. Cut off from services, parents are sometimes unaware of the existence of benefits and allowances, voluntary workers, facilities for short-term care, help with transport etc., and have no one to advise them on future needs and possibilities. A sympathetic G.P. is very helpful. However, some doctors persist in taking mental handicap as a medical condition simply, ignoring its aspects as a social and emotional problem for the family.The situation is that in the case of both physically and mentally handicapped children, at birth the mother relies on the tact of the practitioner or the nursing staff. Mothers can be left, sometimes overnight, knowing that something is wrong but not knowing what it is until these people are available. Here, the hospitals and maternity homes should have guidelines for the most humane possible procedure involving parents, and immediate support for the mother in the form of support workers, social workers and health visitors. Possibly a parent group should be alerted.In the first year—this is particularly so in the case of mental handicap—too many parents are left without help. The general practitioner gives no information and suggests a return visit in six months. The health visitor may be uninformed about the likely progress of the child or the existence of assessment clinics and available help. Here, families with a mentally handicapped child should have allocated to them a specialist officer who has an obligation to talk to them, and to whom they can turn. He should supply the first link between the various authorities—the general practitioner, the area health authority the social services department, and so on.
It is crucial to improve communications between these agencies and between them and the voluntary bodies, because too often agencies are in dispute with each other and are jealous of each other's ability to help children.
We now come to late diagnosis. Mothers may encounter great difficulty 1826 in obtaining referral to a specialist for diagnosis through their general practitioners. Other qualified workers may recognise the handicap and be unable to say anything if the GP is not willing to act. Early diagnosis is now considered vital. Valuable time may be lost. There must be some channel for the use of any qualified worker who recognises the possibility of a handicap to ensure that it is investigated. This cannot be stressed enough.
Professional confidentiality sometimes works against the best interests of those whom it is meant to protect. My wife is the Chairman of the Mentally Handicapped Society of Ely, which provides a baby-sitting service for parents. It is paid for by the society, which is run in co-operation with the local social services department. The society wishes to make the service available to all parents in the area, but it is not allowed to know the names and addresses of parents who are not members. The social services department informs the parents direct, but the society cannot provide a back-up service.
In a letter to me, the head of social services said:
I am very interested to hear that you are willing to explore the possibility of starting a mother and child playgroup, but I am afraid it would not be correct for me to pass to you the names of mothers with pre-school age mentally handicapped children. We would not provide this information to anyone.Here is a community in which people want to help others, but professional confidentiality is preventing these good people from getting in touch with children who desperately need their help.Many multiple-handicapped young people need expensive equipment. There should be a bank of teaching aids, language masters, therapy aids and special cutlery in every area on which schools and hospitals could draw on a loan basis. At present, people buy these items, and when a handicapped child grows up or gets better there is no way in which the equipment can be passed on to others.
In education, school places should be available from the age of three or four, or even sooner, for all handicapped children, and opportunities should be given to them to continue their education until the age of 19. At present, only lip service is paid to this. Education authorities, although empowered to keep children until 1827 the age of 19, rarely do so, and are rarely able to do so because of the pressure of numbers for school places. There are not enough places available in adult training centres, and a serious shortage is forecast for next year. In these centres there must be more emphasis on education. Priority should be given to plans for residential provision to achieve the target in the Government's excellent paper "Better Services for the Mentally Handicapped."
My main plea is for more foresight and interest. When the debate was announced, I was touched to receive a call from the Department of Education and Science to say that the Minister was taking an interest. We need more interest and more understanding from more people.
When schools are built adjacent sites should be investigated to see whether provision can be made there for mentally handicapped pupils. When the Department of the Environment makes money available for a sports centre, it should do so on condition that the centre is to be used by handicapped children for a certain number of hours a day.
I ask the Treasury to bear in mind the total inability of the severely handicapped to cope with cuts. When cuts are made, the handicapped—not the miners, the seamen or the police—are the special cases. The phasing out of the invalid trike was the one of the cruellest cuts. It was said that the trike was dangerous, but I have never met a handicapped person who did not value mobility above personal safety and independence above the inadequate bus fare allowances that will be the successors to trikes.
I am happy that the previous Prime Minister should award an honour to the manufacturer of raincoats, but I would much sooner have seen honours go to those who deserved them, namely, the teachers, the parents, the architects, and all those who gave extra care, thought and time—of which many had so little—to this cause.
Life is an ongoing state, and so is being handicapped. The sick and the well can decline or improve, but there can be no improvement without care, thought or concern. If we send all handicapped children to places where they make baskets, there will be nothing but decline. 1828 To the handicapped, a hospital or residential school is a home, not a place where they spend a few days or weeks until they get better. Hospitals for the handicapped must adapt, so that they are acceptable as homes for those who are in them. It is a measure of the compassion of a society whether the handicapped are given the love, care and facilities of a society that they need. As a nation, I should say that we are on the borderline of compassion—no more than that.
I end by introducing two case histories from a report that my wife submitted to the local doctors, teachers, social workers and parents of Cambridgeshire after two years of "caring" for all my constituents but especially my handicapped constituents. She writes:
Nothing can make the parents' realisation that their child is handicapped less than a deeply emotional and shocking experience. The diagnosis of the child's condition is a medical one but once given to the parent, it immediately gives rise to complex social issues. The earliest one with which we should be concerned is how to avoid adding to the parents' distress by insensitivity or lack of preparation.The first case I would like to quote in this context is of a mongol child … who was born at 8.45 p.m. and the mother realised there was something wrong as the baby was not brought back to her and she saw the staff looking at her. She asked the midwife and the nurse separately what was wrong and was told the doctor would see her later. In the meantime, the maternity home telephoned the father and said: 'your daughter has Downs Syndrome; will you come in the morning?' He had never heard of Downs Syndrome and neither had any of his mates. He said afterwards that he went through agonies during the night. His wife lay awake in the ward thinking that her baby was dying and in the middle of the night, got herself out of bed to go down the corridor to find out if she was still alive. The midwife told her the truth about the child at 6 a.m. and the husband came in later, but he was not by this time calm enough himself to be able to comfort his wife. The midwife and the doctor had both wished the mother to have a good night's rest before hearing the bad news.The second case concerns a mongol child who was born last November. The mother wrote:Our daughter was two days old when my husband was told she was a mongol, and five days old when I was told. My husband was told by the doctor while he was visiting me and told not to tell me.Later, my own family doctor came to my home to tell us together. This was much the better way to be told as he explained so well to us both, as all my husband was told at the hospital was that our baby was a mongol; there was no explanation why or what it 1829 meant; I think we should have been told together as I would have liked to comfort my husband as that was the time he really needed me. Instead he had to hide his feelings for three days.That is the point that I wish to bring before the House, and I give way to the Minister.
§ 11.50 p.m.
§ The Under-Secretary of State for Health and Social Security (Mr. Alfred Morris)Notwithstanding what was said about dispensing with the normal proprieties, I hope that the hon. Member for Isle of Ely (Mr. Freud) will at least allow me warmly to congratulate him on his persuasive and skilful advocacy in opening this somewhat adjourned Adjournment debate. As the hon. Gentleman will recall, the debate was to have taken place earlier this year. I know that both the hon. Gentleman and his wife take a keen personal interest in the welfare of handicapped children and have done so for many years. They do a great deal of exemplary work for disabled children and their families.
I have but 11 minutes in which to reply to a speech that contained many questions as well as many points with which I would wholeheartedly agree. Naturally I shall try my very best to respond as positively as I possibly can in the time available.
To have a handicapped child can impose very severe strains on a family. I should like first, therefore, to say something about what is being done already to help these families.
The hon. Member emphasised the role that the National Health Service has to play in helping handicapped children and their families. The most effective action that the NHS can take in regard to mental and physical handicap is to try to prevent its occurrence wherever possible. In my view, there is much scope for preventive action through improving services during pregnancy and childbirth. As a follow-up to my Department's consultative document, entitled "Prevention and Health—Everybody's Business", we intend soon to issue a paper on care in pregnancy and early infancy.
My Department is keen to ensure that all health care activities with a preventive purpose in this area are co-ordinated so as to provide a comprehensive service 1830 with the prime objective of reducing the incidence of handicap. Before conception, the service would ensure rubella vaccination for the mother, the availability of family planning advice and the provision of genetic counselling for those at risk of certain inherited conditions. During pregnancy, a high standard of ante-natal care is required with pre-natal diagnostic facilities where necessary. I am especially concerned that older women should he offered tests to detect Down's Syndrome, to which the hon. Gentleman referred, and I am hopeful that services for the detection of neural tube defects can be expanded in the near future.
All these matters will be dealt with fully in the proposed follow-up paper I have mentioned. It is important also that birth should take place in well-equipped hospitals, where the full range of modern obstetric and pediatric techniques is available, and also that there should be a prompt clinical examination of the newborn.
By encouraging continued development in these areas, we hope that over the years ahead we shall see a real decline in the numbers of children born with severe handicapping conditions.
The hon. Gentleman will know that all babies are examined at birth for observable abnormality, including Down's Syndrome, and that arrangements are made for any care or treatment that might be needed. There is also special surveillance of all handicapped children to make sure that everything possible is done to minimise handicaps. Between six and 14 days after birth, all infants are tested for phenylketonuria, a disease which can result in mental handicap if untreated, so that appropriate dietary treatment can be initiated as soon as possible.
There is evidence that effective, special and intensive care for sick and low birth-weight newborn babies can both save lives and reduce the incidence of mental and physical handicap in the survivors. The consultative document "Priorities for Health and Personal Social Services in England", which was published earlier this year, gives high priority to improvement of standards of special care for the newborn.
The birth of a child with a handicap that can be immediately diagnosed must be regarded as an acute emotional and 1831 social crisis for the parents. A booklet on "Care of the Child with Spina Bifida", prepared in 1973 by the Standing Medical Advisory Committee, stressed the skill that is required in counselling the parents of a child with this condition. It suggested that the father should be involved in discussions about care at an early stage. Repeated opportunities should be provided for both parents to discuss their anxieties with professional advisers. Ideally, one member of staff should assume particular responsibility for stimulating these discussions. The importance of repeated opportunities for such discussions, both in hospital and at home, cannot be overemphasised. I am sure that this advice holds good for all types of handicap which are apparent at or soon after birth.
The importance of the multi-disciplinary assessment for children with suspected handicap has been recognised for a number of years. It is referred to in policy circular HM(71)22, "Hospital Facilities for Children". Our consultative document on priorities also recognises the importance of providing comprehensive assessment and follow-up services to help handicapped children to reach their full potential.
Comprehensive assessment services encourage the participation of parents, and provide them with support and advice in the management of the child. Parents' discussion groups, toy libraries and supplies of appropriate literature may be arranged and the parents put in touch with appropriate voluntary organisations.
The hon. Gentleman also drew attention to the problem of confidentiality of information about handicapped children. That is an extremely important matter. I think the key to overcoming the main problem lies in parental involvement in making plans for the child. When a child is first referred for multi-disciplinary assessment, the parents' permission should be sought to share information among members of the team. When the child's needs are discussed with the parents in a counselling session following the assessment, as they always should be, permission can be sought to tell any voluntary organisation which may be able to help about the family's needs. Such permission is most unlikely to be refused.
I certainly take the hon. Gentleman's point that the parents of mentally handi- 1832 capped children often find difficulty in knowing just what services are available to them and how they may be approached. This difficulty is increasingly being countered by the provision of guides to services prepared by the authorities concerned with particular areas and circulated, not just to parents, but also to members of all professions who may come in contact with the parents or the child. These guides are to be strongly commended and I hope that, even in these difficult times, those authorities at present without them will give their production serious consideration.
In my own area, the city of Manchester has recently published an excellent guide to the services available to mentally disabled people. On the further point of a specialised co-ordinating officer for services to mentally handicapped children, I can only say that the importance of the problem of service coordination is well recognised by my Department. I hope that there will shortly be available a comprehensive guidance pamphlet prepared by the National Development Group for the Mentally Handicapped and I am sure that the advice it provides will be very carefully studied by service planners.
Another question to which the hon. Gentleman also referred was that of coordination between all the agencies that can help. How often do we hear of parents who are quite overwhelmed and bewildered by the complexities of the welfare "machine" and do not know which way to turn? This is not in any way an indictment of the advice and help given by statutory organisations or by the voluntary sector; it is simply a reflection of the highly complex range of needs of the handicapped child and his family.
One of the big and intractable problems of our time is how to make the "machine" accessible and understandable to people who are in a distressing situation which is new to them. What they need is a "single door" approach to make the face even of the largest institutions seem more human. This approach can help to reduce the fears that so often afflict the parents of a handicapped child. I am, therefore, most grateful to the National Children's Bureau for its important initiative in 1833 recently establishing the Voluntary Council for Handicapped Children.
One of the main aims of the new council is to provide the "single door" approach to the very wide range of help which is now available from so many different agencies. I am much impressed with the council's work so far and by the quality of its first pamphlet "Help Starts Here", which I understand will be followed by other publications. I am also very interested in the seminars and "workshops" which the council has mounted. The membership of the council represents a great deal of talent and expertise, covering all the interests of handicapped children. I am naturally very glad to have been able to authorise payment from my Department of a grant to the council of £30,000 over three years. This example of voluntary organisations working together is one that might well be followed by other organisations in the voluntary sector. I commend the National Children's Bureau for the initiative it has taken.
My right hon. Friend the Secretary of State for Education and Science would agree with the hon. Gentleman that many handicapped children need to start their education at the age of 2 or 3 and many need to continued it after the age of 16. Further study is required, however, into the numbers who would benefit and also into the forms of provision that are desirable. It is generally accepted that a range of facilities is needed to suit the requirements of individual handicapped children. The Committee of Inquiry into Special Education, chaired by Professor Mrs. Mary Warnock of the University of Oxford, which will be looking at the educational needs of handicapped children at both these stages, is expected to report early in 1978.
Adult training centres play a key role for mentally handicapped people when they leave school. They help the mentally handicapped to develop and to make the fullest use of their abilities. I always 1834 like to emphasise the abilities of disabled people. Many people fail to see that it is not just the disabilities but also the abilities of handicapped people which count. The work skills and social skills taught there not only help mentally handicapped people to cope with the many problems of everyday life that most of us take for granted but enable some of them to move to sheltered or outside employment and so become properly integrated into the community.
All these matters are being considered in depth by the National Development Group for the Mentally Handicapped, which is taking day services for the mentally handicapped and, in particular, adult training centres, as one of its priority areas for policy development. A subgroup is now at work on a pamphlet on the role of these centres, which it is hoped will be of value both to practitioners and planners.
The Consultative Document on Health and Personal Social Services Priorities reaffirms that our primary aim is to ensure that mentally handicapped people are looked after in the community whenever this is possible. It is in the formative years that children need the close and warm relationships that a family gives, and which are so difficult to provide in a large institutional setting.
Another aspect of support for handicapped children is special cash provision, which is comparatively new but increasingly important. The attendance allowance was the first cash benefit to become payable. Today the allowance is being paid to the families of some 40,000 severely handicapped children——
§ The Question having been proposed aften Ten o'clock on Thursday evening and the debate having continued for half an hour, Mr. DEPUTY SPEAKER adjourned the House without Question put, pursuant to the Standing Order.
§ Adjourned at one minute past Twelve o'clock.