MENTAL HANDICAP VOL. 12 JUNE 1984

Asian families with a pre-school handicapped child - a study

Mart in Powell Elizabeth Perkins

Summary This study examines the feasibility of introducing a scheme such as Portage to Asian families with a

pre-school mentally handicapped child. It also looks at what the families said they wanted in the way of resources to help them bring up their child. 11 families in an inner city area were interviewed in their own language using a structured interview schedule. The findings support the applicability of an early intervention approach and highlight significant areas of need. It is suggested that the use of a mother-tongue named person would make a substantial contribution to how limited English speaking families understand and make use of services for their mentally handicapped children.

Introduction The Community Mental Handicap

Team (CMHT) in West Birmingham Health Authority was set up in 1979 to serve children with a mental handicap in the electoral wards of Handsworth, Soho, and Sandwell. These wards are part of the Inner City Partnership Project area, and altogether have a population of 57,000 people of whom 12,000 were born in India, Bangladesh, or Pakistan. These wards have many of the problems common to inner city areas: for example, a high level of unemployment, twice as high as outer city areas; and overcrowded houses with a lack of amenities such as baths. The area also has a remarkably high number of still births, perinatal deaths, and infant deaths. For example, in the period 1977-1981, Handsworth had the highest infant mortality rate in the City, and Soh0 had the highest rate of still-births and perinatal deaths.

For these and other reasons the CMHT felt that, wherever possible, it should be providing preventive services rather than having contact with families only in crisis situations. Over the past 10-15 years there has been an upsurge in intervention work with families of mentally handicapped children, to enable the children to make gains in developmental skills through systematic teaching. The most well-known of these interventions is the Portage project, which involves a home adviser visiting the family weekly, deciding with the parent what to teach the child, working

This paper is a brief account of a study carried out on behalf of West Birmingham Health Authority Community Mental Handicap Team, funded by Bmiogham IMer City Partnership Project. The full report can be obtained from the authors on request.

out how to teach it, and leaving an activity chart so that parents can practise the teaching everyday. The CMHT thought that, although this might be a helpful se rv ice to Asian fami l ies , i t was inappropriate to assume that a piece of Westernised technology, such as l’ortage, would assist people of Asian culture. Further research on the needs of such families was required.

Most of the Asian families in the area of concern come from Pakistan, Bangladesh, and India, and are Moslem, Sikh, or Hindu. The main languages spoken are Punjabi and Bengali. This means that the families are very different from each other. An early intervention project, such as Portage, makes assumptions about the attitudes and practices of families that may not apply to Asian families. The authors have identified four main parent attributes that are important in participating in this sort of work.

1. Belief in child development: having the idea that chiIdren develop skills in an orderly sequence which is more or less the same for a l l children.

2. Beliefin teaching: believing that a c h i l d ’ s d e v e l o p m e n t can be accelerated by intervention and that p a r e n t s h a v e a n i m p o r t a n t contribution to make to this.

3. Knowledge of handicap and its implications: realising that the child has problems in learning 2s well as in other areas; understanding that something can be done, and the child can learn, but also having an a p p r e c i a t i o n of t h e c h i l d ’ s limitations.

4. Opportunities for teaching: a c c e p t i n g t h a t changing t h e environment, including their own behaviour, can help the child to learn. An examination of the literature

indicates that there are some differences in child rearing in Asian families that may affect the level at which parents can participate in early home intervention schemes. Ghuman (1975) and Henley (1979) both point out the importance of the e x t e n d e d f a m i l y i n t h e I n d i a n subcontinent, the different roles of men and women, and the lack of toys and special routines for the children. Ghuman (1975) also looked at 32 Punjabi families living in Nottingham to ascertain if their child rearing practices had altered from those in the rural Punjab. He found that in areas where a change in attitude would help the children to cope with the British educational system parents still displayed the attitude they would have had in the Punjab. For example, parents bought very few toys, and did not attempt to teach children by reading stories, teaching letters, pointing out aspects of the environment, and so on. Children were encouraged to play with other children rather than with toys.

Bardsley and Perkins (1983) reported on a Portage home visiting service operating in Central Birmingham Health Authority. Of the nine Asian and nine English children receiving the service, there was no difference between the two groups in terms of the number of activity charts filled in by the parents and the number of goals achieved by the children. There were , however , some qual i ta t ive differences which could perhaps be related to the four parent attributes listed above.

The present study The study set out to investigate the

needs of Asian parents with a pre-school child, with particular reference to whether they would benefit from help in teaching their children new skills.

MARTIN POWELL is an Educational Psychologist working for Birmingham Education Department, Child Advisory and Psychological Service and ELIZABETH PERKINS is a District Clinical Psychologist working in South Birmingham. 50 0 1984 British Institute of Mental Handicap

MENTAL HANDICAP VOL. 12 JUNE 1984

PROCEDURE Zdentifying children. It was decided to inlerview families of Asian origin, living in the geographical area, who had a child under five years of age who was severely mentally handicapped and not in full-time provision. Health visitors agreed to identify the children, tell the families about the survey, and introduce the interviewers to the families. 17 families were identified, of whom 11 were interviewed.

Construction of the interview schedule. The interview schedule was designed to collect three types of information.

1. Status data, for example, the number in the family, the sort of house they live in, how many speak English, and so on.

2 . Information about the help parents had received, what help they knew of, and what further help they would like.

3. Information about whether the parents had the four skills listed in the introduction. For the third item assumptions had to be

made about which aspects of behaviour would affect which skill. For example, would fixed roles in the family affect parents’ opportunities for teaching?

The schedule was drawn up with the help and advice of many Asian people, including the interviewers themselves who were given the rationale for each question so that they could ask it in the way they felt most appropriate to each family. Interviewers. The interviewers were to carry out a sensitive and complex interview procedure. The selection criteria included fluency in English and the mother tongue of the families they were to interview. Four interviewers were selected. Each was given 1 Y2 hours’ initial training, and one hour’s debriefing session after each interview.

FINDINGS

(1) explore the extent to which the cultural background of Asian families might affect t h e i m p l e m e n t a t i o n of an ear ly intervention project, such as Portage;

(2) elicit from the families some indication of the resources that would help them bring up their handicapped child.

The survey aimed to:

As well as looking at how the data met the aims of the survey, it is also worthwhile to relate the findings to other studies. This is most feasible with the findings concerning family life and routines.

One of the four parent attributes suggested as being important for the successful implementation of a structured home based programme like Portage is the extent to which parents have the idea of children developing skills by certain ages.

Apart from one unclear return, the families studied did have the concept of ages and s tages for normal child development. Their expectations of normal child development showed some agreement with Western norms, but differed in regard to washing, dressing, and becoming dry by day. The areas of difference were in items where the influence of cultural expectations possibly exceeds maturational factors and thus different cultures produce different norms.

The findings revealed some interesting incidental information. Some families were very close to Western norms in their estimation of ages a t which certain milestones should be reached, whereas some were quite strikingly different. There was some evidence that families with inappropriate expectations for their handicapped child tended to have an idea of ordinary development that was much earlier that Western norms. As they expected children to develop earlier these parents were more likely to view the development of their handicapped child inappropriately.

The second parent attribute examined was the belief that a child’s development can be accelerated by intervention and that parents have an important contribution to make to this. Ghuman (1975) pointed out that Asian mothers did not see it as their role to actively teach their children. This is supported by the findings of Henley (1979) and Davenport (1983). The picture emerges of children being encouraged to play together with whatever equipment comes to hand rather than parents buying “educational” toys and mothers sitting with the children to teach them. Ghuman’s data showed that 91 per cent of Asian children had no educational toys but that 69 per cent had soft toys or similar. In the present study 10 out of 11 children had soft toys, books, or balls, but only one parent mentioned toys that required manual dexterity or problem solving. Without Ghuman’s findings it might have been supposed that the prevalence of soft toys reflected the existence of handicap and developmentally young children. It seems, h o w e v e r , t h a t t h e absence of constructional, interlocking, posting, sorting types of toys might be a more common finding.

Despite the absence of “educational” toys, the present study found some signs of m o t h e r s t each ing sk i l l s to the i r handicapped children, especially speech and language. 10 mothers thought that, in general, children could be helped to say words; six thought they could be helped to feed themselves; and four thought they could be taught to become dry. Mothers mentioned ways in which they carried out training in these skills. The picture that emerged was of a modest expectation that c h i l d r e n cou ld be t a u g h t ea r ly developmental skills and that mothers, particularly, played an active part in this

process. However, if the process is explicitly labelled as “teaching”, and if a teacher is available, mothers may, as in Ghuman’s study, see this as being a teacher’s responsibility.

The third parent attribute considered important for a structured intervention approach was parents’ knowledge of their child’s handicap and its implications. In this study, seven families had no idea what was wrong with their child in terms of a diagnosis. Although in some cases the diagnosis was very clear from the point of view of Western medicine, for example, Down’s syndrome, parents were unaware that the problems presented by their children formed the cluster of symptoms associated with par t icular known conditions. The failure of parents to relate what was going wrong in the development of their child to available medical knowledge of the handicapping condition, contributed to some inappropriate expectations. For example, the family of one hydrocephalic child believed he would be normal once his head went down.

The fourth parent attribute concerned opportunities for teaching that were available in the natural routines of the day and the extent to which families were able to change the children’s environment to help learning to take place. Obvious limiting factors were lack of space available for playing, learning, and teaching and, as already mentioned, lack of “educational” toys. Only four mothers mentioned playing with their children, a finding similar to that of others (Ghuman, 1975; Davenport, 1983). Any Western style intervention based on play and requiring toys would find this an obstacle. Another limiting factor might be the lack of literacy, certainly if parents were expected to read English. Only four mothers and seven fathers spoke English, one mother wrote it, and five fathers read it. No data was obtained about literacy skills in parents’ own languages. The provision of mother- tongue home visitors and educational type toys might circumvent some of these obstacles.

A more fundamental concern centres upon the mother’s role. Ghuman found that 79 per cent of children slept separately from their parents, a major change from child rearing in rural Punjab. In the present study all handicapped children shared a room with their parents (although it is not possible to say how many slept separately from their mother). In Ghuman’s study 75 per cent of families had no help from grandparents. The present findings indicate that the extended family was part of over half the households, played a part in naming the child in four families, decided where the family should live in three families, and what should be eaten in two families. One mother only was helped to look after the child by a grandmother. Ghuman found that 80 per cent of children were looked after by mother substitutes for part of the day. The

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MENTAL HANDICAP VOL. 12 JUNE 1984

families in the present study were markedly different: a picture emerged of m o t h e r a s suming a lmos t t o t a l responsibility for the day-to-day care of the handicapped child.

Of the repl ies to a l l ques t ions concerning routine child rearing and household tasks, the overwhelming majority (77 out of 104) indicated mothers performed the tasks alone. Whether this would make it difficult for mothers to undertake structured work with their handicapped children is difficult to say. It could be argued that it emphasises the mothers’ need for help in teaching their children skills since they are almost solely responsible for interacting with and managing the children.

When asked what things would make life easier in bringing up their handicapped children, without prompting three parents could think of nothing that would help them, two mentioned nursery places, two wanted someone to call (one of these mentioned someone to play with the child), and two mentioned financial help. Housing, a strong cot and push chair, and help in learning English were also mentioned. When prompted with a number of categories, six families mentioned day placement, five financial help, five help with housing, and six help in learning English. Only two wanted baby-sitting help. Eight wanted someone to visit to talk to, especially in their own language. Nine of the 11 families wanted advice on teaching their child.

The evidence from the families and supplementary comments from the interviewers indicated quite strongly that families were not having their needs met.

Financial and housing needs were apparent. Information about the services that families were receiving revealed a real lack of understanding by the families about the network that was available to them. Not only were families unaware of the range of services and benefits to which they were entitled, but they seemed not to understand the services they were already receiving.

Discussion The main finding of this study is the

families’ lack of knowledge of their children’s handicap and of the services available to them. The families desperately need a named person who speaks their own language, whose role is to help them make use of existing services and enable those services to become of more use to the families. This named person would need to have extensive knowledge of services available, and some way of informing services and planners of the deficiencies as far as these families experience them.

There can be little excuse for the paucity of information about their children’s handicaps that has reached these families. Allowing for the fact that the long term implications of the various handicapping conditions may not be clear, even quite basic information had not been assimilated by the parents or had not been given to them. The provision of a named person, a mother-tongue speaker, knowledgeable about mental handicap, or at least able to interpret for and counsel the parents, would greatly assist professionals whose job it is to provide families with such information.

Most parents wanted advice about

teaching their children. I t is worth drawing a distinction between the process of teaching the child, and that of helping the mother to teach the child. Ghuman suggests that if the process is formally labelled as “teaching”, and if a teacher is expressly provided, the mother would see teaching as the responsibility of the teacher, and it would be difficult to involve her. What seems to be needed is some way of giving parents the confidence to try to teach their children skills with regular support. Linking a scheme, such as Portage, to mother-tongue speaking home visitors may be the most suitable way of providing that support. This study found no evidence of insurmoutable obstacles to the use of a Portage approach with families from India, Pakistan, or Bangladesh. Indeed a Portage scheme has been demonstrated to work with a similar popu- lation in Central Birmingham (Bardsley and Perkins, 1983).

This scheme and the present study indicate that any Western educational service of this kind needs to be operated with a full appreciation of the cultural and linguistic differences.

References Bardsley, J., Perkins, E. A. Portage with Asian

Families in Central Birmingham. (Paper presented at National Portage Conference, London) 1983.

Birmingham Inner Profile. Birmingham: Birmingham Inner City Partnership, 1982.

Davenport, E. The play of Sikh children in a nursery class and at home. Educational Review,

Ghuman, P. A. S . The culrural contexr of rhinking. Windsor: NFEWNelson, 1975.

Henley, A . Asian Patients in Hospital and a: Home. London: King’s Fund Publications, 1979.

1983; 35, 127-140.

A new role for hospital schools Nigel Roberts

Recent years have seen a great decline in the number of people living in mental handicap hospitals; admissions are few, and discharges to various types of alternative accommodation are frequent. As a result, schools situated on hospital sites have seen great changes and many now face closure. Whilst it can be said that the problem is simply one of the schools losing their catchment area, that is, being left with reduced numbers of children resident in hospital, there is the equally important but less obvious fact that hospital schools have no well defined category of child to provide for educationally.

Despite the present predicament, hospital schools continue to educate some extremely difficult children, who present not only profound learning difficulties but also severe management problems. They are concerned with helping to equip these young people with the skills necessary for a new life in the

NIGEL ROBERTS is Teacher-in-Charge of the Social Adjustment Centre at Alexander Patterson School, Cookley, Kidderminster, Worcs.

community. The success of this work has largely been due to the fact that hospital schools have provided pupils with a curriculum which makes it possible for even the most severely disturbed children to participate in all the activities the schools offer.

Since 1971, in addition to serving the reduced needs of hospitals, many hospital schools have accepted children who live at home or in hostels. Even so, there still seems to be a tendency for education authorities to maintain a traditional attitude towards them. The schools are still regarded in many areas as providing an “acute service” to the educational world; and only rarely is it the practice to suggest that they can offer a suitable learning environment for children who are handicapped, other than for short periods of assessment, or when there is a total breakdown at home, or perhaps in a child’s usual day special school.

Yet hospital schools can offer a significant service in special educational provision, and for this reason are worthy of greater recognition. It is perhaps important, therefore, to seek certain distinct categories of special need, on which hospital schools can concentrate in order to provide a service for the community.

Problems encountered in hospital schools Although at present no distinct category of child exists in

hospital schools, particular types of problem behaviour do exist that are peculiar to this type of establishment. The largest group

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52 @ 1984 British Institute of Mental Handicap