Library Collections: Document: Full Text

University of California Extension, Berkeley, California, 1979

I think it is fair to say that the two mainsprings in the introduction of the developmental disabilities legislation in our country were, on the one hand, the recognition that combining the interests of several disability groups might provide greater political clout, and, on the other hand, the recognition that groups originally selected under this designation had the following in common: the particular needs related to management of disability in the early years of child development, and the dearth of services available to meet these needs. Early intervention, not just limited to early diagnosis but effective help to the home to assist the family in meeting the needs of the infant and very young child with severe handicap, has been almost universally neglected, as my husband and I have found in consultation visits to some 35 countries.

The reasons for this neglect doubtless vary from country to country. There is, for instance, the cultural tradition that very young children should be the responsibility of their mother, and there is the bureaucratic problem of delivering services to the home. Another factor may well have been that the parents, who in the 1950s and 1960s themselves organized cooperative services for their handicapped children and through their Associations demanded help from the State, mostly had children of school age or older.

To be sure, in some countries counseling was offered to parents to help them deal with their "psychological problems," but what disturbs parents in the first place is the frustration of not knowing how to help their child effectively, and about such practical matters the counselors had little to say. Increasingly, countries developed clinics which provided diagnostic services, but these too rarely offered the kind of practical advice which could be utilized by parents at home.

While there are some notable exceptions, on the whole it can be said for all the countries that when these severely handicapped children are admitted to an educational program (and there are marked differences in the age of admission), their level of functioning -- and their resulting disablement -- is distinctly below what could have been possible in view of the original impairment. This may refer to speech and other means of communication, nourishment and eating habits, toileting, and the whole range of sensory-motor activities and social adaptations which are of such crucial significance in the development of a severely handicapped child. In addition, there are specific health problems such as the correction of orthopedic, visual, and hearing defects which often remain unattended to the detriment of the child's developmental potential. Last, but by no means least, should be mentioned a frequently encountered unduly low level of physical activity. Traditional overprotectiveness keeps parents (and others) from encouraging the child to engage in active physical exercises (walking, running, jumping, ball playing), and this is reinforced by a low level of expectancy in this regard, which most likely was conveyed to parents in their contacts with professional workers.

In short, granted that there are notable exceptions, it can be said that in most cases, developmentally disabled infants and very young children and their families face an unavailability of the most essential services and a disregard of the most self-evident needs in the most natural setting, the family home.

A British pediatrician, Frederic Brimblecombe, well known for his imaginative approach to early intervention with handicapped children, has described his recognition of this service void and his response to it as follows:

In Exeter, we made a survey of the unmet needs of handicapped children and their families. Our study was controlled (in the scientific sense) in that for each family with a handicapped child we interviewed a similar family without a handicapped child. In all, from a birth population of 6,000 children we found 310 children who had had a significant handicap identified before their 5th birthday (and 310 families without handicapped children who had a child of the same age, of the same family size and the same socioeconomic class). The "control" families had in many respects as many unmet needs as the handicapped families. When these had been equated we identified three particular unmet needs of the group who had handicapped children. These can be summarized.

1. A need for more information about the nature of the child's handicap.

2. A wish by the family to be helped to become more self-reliant in dealing with the child's handicap; in other words a failure by the professionals to transfer to the parents the special skills, confidence and courage needed to help their child achieve this full potential.

3. A need for more family support. The families with a handicapped child felt themselves to be isolated, the brothers and sisters deprived of many social facilities, a high risk of marriage breakdown among the parents, and above all a gradual erosion of their courage and strength so that at last exhausted and bitterly humiliated by their failure to cope, a number of families had sought institutional care for their handicapped child. (Brimblecombe, 1978)

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These findings caused Dr. Brimblecombe and his associates to ask some searching questions about the usefulness of the services then being offered to such families, and also to inquire into the adequacy of those who render these services, as well as the appropriateness of their professional training. He continues in his report as follows:

The answers to these questions were not reassuring. The services provided clearly failed in many respects to meet the expressed needs of families with handicapped children. It was decided to experiment by providing a different type of resource aimed to achieve -the following:-

1. "More than words and talk; it must be genuine and show itself in action." Only in this way could the relationship between the family and the professional begin to measure up to what we sought to achieve.

2. A service which enabled families to achieve the skills, self-reliance and confidence: a) To provide for their own needs b) To assist them to know what services to seek and obtain when faced with problems beyond their own capabilities. (Brimblecombe, 1978)

Certainly this points up very forcefully the broad opportunities social workers have to participate in a program of early intervention alongside a broad array of such other specialists as pediatricians, developmental psychologists, teachers, nurses, and the practitioners in occupational, speech, and physiotherapies. Again I quote from Dr. Brimblecombe's report:

From the start, one member of the center became the named person who would be responsible for ensuring that the needs of that particular family were met. This person irrespective of his discipline would be responsible for ensuring that the three main aims of our project were achieved for the particular family: (1) that the family fully understood the nature of their child's handicap; (2) that they were enabled to learn the skills and achieve the confidence to help their child achieve his full potential; (3) that they received all the family support that they needed. Once the total needs of the child have been identified, a treatment plan is made in full discussion with the parents and also with the single member of staff (irrespective of discipline) who will work directly with them. From then on, the treatment is carried out at home by the parents supported by regular home visits by the member of staff responsible. Where problems arise the particular member of staff and the parents can at any time obtain expert advice from the particular professional in whose discipline the difficulty lies. At the same time, a close relationship develops between the member of staff and the family. The family is provided with a confidante who will at all times be available when needed.

In addition the Center itself is available for family support. It is open every day and night throughout the year. The child can come whenever the parents wish and for periods which they themselves select, for the day, for the night, for weekends or for longer periods depending upon the needs. Most parents decide to have a regular arrangement so that they know in advance that their child will spend two regular days a week at the Center or alternate weekends. They also know that they can call upon us for help at any time in an emergency. .. No one wears uniforms; the atmosphere is informal. Children and parents come and go, both for a day and for short term residential care as their own family needs require. Parents are key members of the policy committee which has been formed to decide further developments in the service. (Brimblecombe, 1978)

Let me re-emphasize: this brief account of Dr. Brimblecombe's work in Devon is presented here as a shining example of what ought to but generally does not yet exist in England.

Marked exceptions to the general neglect of the earliest years of the child with developmental disabilities exist elsewhere as well, some of them, of course, in California. Indeed, it was our close acquaintance with the Developmental Center at the Children's Hospital of Los Angeles which first directed my husband's and my attention to the importance of early intervention.

The Retarded Infant Services in New York City pioneered in the early 1960s and the United Cerebral Palsy Associations maintained at about the same time some striking demonstration programs of work with families on behalf of children multiply handicapped to a most severe degree. The American Academy of Pediatrics in recent years has begun to push early screening programs to discover children with handicaps at the earliest possible age. But in New Zealand such a nationwide screening program has been going on for at least twenty years through a cooperative scheme of public and private resources.

South America, overall, is extremely backward in social services in general and services to developmentally disabled children in particular. Yet 15 years ago, in Montevideo, Uruguay, Eloisa de Lorenzo, an educator and psychologist, persuaded the University Hospital to start a program of early intervention for high risk children, with a strong research component. At about the same time, over in Buenos Aires we visited the clinic of Lydia de Coriat, a neurologist, and saw her developmental program for infants with Down's syndrome and for those having neurological disorders, a program with strong parent participation which was years ahead of what could be found in most university hospitals in our country at the time. A key member of Dr. Coriat's team was an early childhood educator who worked with parents and their infants both at the clinic and in their homes.

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These few examples must suffice to make the point that the shopworn phrase "islands of excellence" is most appropriate in this context, because even in their own country these islands of excellence often remain unconnected to the "mainland of practice." There is for instance a service known as a toy library and consultation center initiated in Sweden by Karen Stensland Junker in the early 1960s. (Her book about her autistic daughter Boel, The Child in the Glass Ball, was published in English in 1964.) Toy libraries are easily set up and can be run most economically -- e.g., one day a week, on Saturday, after school hours, using the school building, a private home, or the public library. It is a service which can bring to parents both reassurance and stimulation in a non-threatening, appealing setting, and can be of great benefit to the child. Yet, until very recently, this significant component of an early intervention program which has been repeatedly reported in the literature was found in any quantity only in Sweden, Norway, Great Britain, and Australia. By the way, a good Parent/Child Toy Lending Library how-to-manual was already produced here in Berkeley by the Far West Laboratory for Educational Research and Development in 1972. I hope that at least some in this audience have seen this manual and recognized its usefulness in work with families of developmentally disabled children as well as with the non-handicapped children for whom it was prepared.

A vital aspect of the developmental disabilities legislation and its underlying philosophy is the participation of disabled persons and their families in planning and decision making processes. In our country this has been laid down in rather elaborate fashion, both in the statute and in regulations, not only in developmental disabilities law but also in the Rehabilitation Act in general, and in the Education for All Handicapped Children Act of 1975 -- Public Law 94-142. Other countries have not developed as elaborate and detailed a statutory approach in this regard, but the principle of greater participation of the handicapped person and his or her family is very much in evidence.

As a matter of fact, already in 1971 the International League of Societies for the Mentally Handicapped held a Symposium on Cooperation between Parents, Clients, and Staff, attended by delegates from 13 countries. One section of the conclusions of this symposium dealt with obstacles on the way to the desired cooperation and their possible solution. This was presented in three segments, one dealing with the parents, one with the personnel, and one with the handicapped people themselves. Since our Conference today deals with the functioning of social workers in the field of developmental disabilities, let me read to you the paragraph concerned with personnel:

The problem for the personnel is that it is difficult for the professionals to accept parents as equal partners in the team. Even so the personnel often feel that parents are too emotionally involved.

The personnel often do not understand the emotional involvement of the parents as a natural and understandable phenomenon and are not able to understand that parents also must go through a certain development.

Insufficient education in many disciplines is a reason for too little knowledge about families with handicapped children. Therefore specific and practical advice and assistance is often needed. (ILSMH, 1971)

Much of this advice has come to professional workers from experienced leaders in the parent movement. Particularly in the Scandinavian countries there developed an attitude of mutual respect between the professional workers and administrators and the parent activists, a respect which permitted much joint planning and joint decision making.

While programs initiated by the parents were gradually given over to the public agencies, this has not been the case with one program area, parent-to-parent counseling. In both Norway and Sweden this activity of the associations is financially supported by the government. In France there developed a nationwide program known as Action Interfamiliale -- Interfamily Action, -- which uses experienced parents to help "new" families and those who have difficulties coping with their handicapped child. Indeed, in France and some other countries there is a distinct trend which goes beyond parent-to-parent counseling to family-to-family interaction, an interesting parallel to family oriented counseling, which is increasingly used by social agencies in this country. Worth noting is a development in Metropolitan Toronto where the interfamilial action, "Extend-a-Family," is neighborhood based and included families with and without a handicapped child.

Significant as is the parent participation in planning and decision making and in counseling, of even greater significance in terms of policy development will be, in the long run, the participation of the persons with developmental disabilities themselves. Exciting things are already happening in this respect in a number of countries. Sweden took the lead, followed by England, Canada, France, and the United States. Tomorrow, an organization of developmentally disabled persons known as PEOPLE FIRST is holding a two-day conference in San Francisco, its first in the Bay Area.

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The problem one encounters is twofold. On the one hand, many disabled people have never had a chance to learn how to make a decision; further, both parents and professional workers have been so convinced that the handicapped person is unable to make decisions that they are apt to hinder rather than further such attempts. Yet progress is being made everywhere. If only time would permit, I could tell you about a group of persons with cerebral palsy, confined -- quite inappropriately -- in an institution for the retarded, who managed to appear before a legislative committee pleading for funds so they could move into the community. I could tell you about a group of severely, multiply handicapped men with epilepsy who, after long years in an institution, are now living in a community group home, without house staff, largely managing their own affairs. I could tell you about the succinct criticism a group of Swedish developmentally disabled young people brought forth regarding many aspects of their programs as planned by a benevolent, sympathetic administration.

One of the main features of our revised developmental disabilities legislation is a Protection and Advocacy system. Here, too, other countries have not developed as formal a program as we have, but advocacy and the related activity of monitoring are significant features in many countries.

In Norway each county has a monitoring team of 6 persons, two of whom are to be selected by the parent associations; the British Spastics Society has been an outstanding, effective monitor of governmental action; and the Dutch Cerebral Palsy Society, several years ago spun off all direct services in order to give its full attention to advocacy and monitoring.

In this area too there is now direct involvement of the handicapped people themselves. In Denmark, for instance, by government regulation every facility serving handicapped persons must arrange monthly meetings to give the clients an opportunity to register complaints, ask questions, make suggestions. Minutes must be kept and must indicate how matters were followed up.

To some of you the matters I have presented may appear unduly optimistic if not altogether unrealistic. What needs to be stressed is that in education, and in rehabilitation, we are now making progress even with the most severely multiply handicapped individuals.

And one further comment needs to be made. So many of our past views were based on the performance of severely disabled persons who had not received proper medical attention, and not even minimal schooling or socializing experiences. It is obviously totally inappropriate to make our projection into the future based on the results of unjustified deprivations of the past.

In focusing on our topic today, Developmental Disabilities, I have had to draw of necessity on examples from countries whose perception of these problems and whose practical approaches are fairly similar to ours in the USA. I would not want to leave you with the impression that there is little going on in countries such as Spain, where the International Cerebral Palsy Society will be meeting in June, or Egypt, where the government has an active concern in adolescents with mental retardation and cerebral palsy -- adolescents so often left out of rehabilitation schemes. In Africa, Christine Kenyatta, daughter of Kenya's late President, has focused attention on the whole area of special education. Ghana's voluntary association for the mentally handicapped began its work by establishing in 1970 a home for severely handicapped children who had been vegetating in a mental hospital. In the large cities we have visited in Brazil we saw good medical rehabilitation facilities for children with cerebral palsy and with epilepsy.

For those of you interested in a broad gauged approach to rehabilitation there are interesting developments to report from countries such as France, Germany, Sweden, and Australia, which have strong, government supported coordinating councils involving all the disabilities.

Further and finally, the topic as formulated did not give me a chance to report on the great contributions made by the United Nations, its Specialized Agencies such as the World Health Organization, UNESCO, the International Labor Organization, and, last but not least, the work of the international voluntary organizations which have banded together in the Council of World Organizations Interested in the Handicapped, known as CWOIH.

This is the International Year of the Child, proclaimed by the United Nations and promoted by UNICEF through all UN member governments. 1981 has been proclaimed the International Year for Disabled Persons, promotion being organized through UN's Division of Social Affairs, so I sincerely hope there will be opportunities for you to become acquainted with the broad range of the international agencies and their work, and their hopes for a world which recognizes that "it is normal to be different."