MENTAL HANDICAP VOL. 11 MARCH 1983

Providing day services for profoundly handicapped adults

Paul Norton

The need Perhaps five in every 10,000 people enter the world with

brain damage so severe that, for the rest of their lives, they will be almost entirely dependent on others for satisfaction of their most basic needs. Profoundly handicapped people require virtually continuous supervision and considerable individual attention if their quality of life is to be improved. Consequently, they make exceptional demands upon people caring for them, and present challenges that our society has made little attempt to meet. Our typical response has been to care for them in large institutions, often completely segregated from the mainstream of human life. Much has been written about the deficiencies in these environments. Even the Secretary of State for Social Services wrote in 1978 that he had been “struck . . . by the contrast between the life lived by many of the residents and that which most of us are able to enjoy”. In recent years there has been a growing recognition that the life experienced by profoundly handicapped people resident in hospital has often been of a quality unacceptable to a humane society, and that, despite the efforts of the most dedicated staff, large residential institutions may be structurally incapable of meeting individual needs.

Yet the search for alternatives is not easy. As many areas lack residential provision in the community capable of accepting profoundly handicapped adults there remains, for too many families, only a choice between the family home and the hospital. Relatives are often opposed to hospitals and prefer to care for the handicapped person in the family home, sometimes seemingly at any cost to themselves. For such families a day care facility is essential if stress is to be reduced to a bearable level and long-stay hospital admission prevented.

In many parts of the country local authority day provision still does not offer a comprehensive service, being unable to accept people with severe behaviour problems or multiple handicaps. Long-stay hospital admission may thus be forced on an unwilling family. Yet the recent policy of drastically reducing the number of mentally handicapped people in hospital has resulted in hospitals being extremely reluctant to accept admissions. Local authorities, therefore, are being compelled to respond to the pressing need by creating day care provision, of which there has recently been a rapid growth.

Such provision may be offered in “special care”, “special needs”, “intensive support”, or “developmental” units. These typically provide for between five and twenty people and are usually on the same site as, or are part of, an adult training centre. The growth has been accompanied by recognition that great uncertainties exist regarding the form that provision should take, and that there is an urgent need to identify standards for good practice.

PAUL NORTON is a Research Psychologist at the Dame Catherine Scott Centre, Blenheim Street, Newcastle upon Tyne.

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@ 1933 British Institute of Mental Handicap

One unit The problems can be illustrated by considering the

experience of one experimental unit. The Special Care Unit at the Dame Catherine Scott Centre began its life in 1977, funded through Joint Finance. At present the unit serves 10 profoundly handicapped people, whose patterns of need fall into four groups: those whose competencies are extremely restricted in all areas; those with severe behaviour problems but whose competencies may be at slightly higher levels; those who are severely physically disabled; and those who are regressing due to a progressive illness.

It was always anticipated that the unit would be more than a “minding” service, aims being educational and supportive. The entire experience has been directed towards promoting trainees’ personal growth, mainly by teaching the skills needed to live with independence and dignity. The continuous long- term nature of the trainees’ attendance puts the staff in an excellent position to provide family support and to respond quickly to any need that may arise. If unable to meet the need themselves, they facilitate the family’s use of other services.

Staff consider that their aim is also to enhance the trainees’ quality of life by enabling them to exercise choice, and by increasing their self-esteem and belief that they are worthwhile people. Caring is relevant, not only in meeting trainees’ needs for physical care but also in the building of relationships with all kinds of people and a consequent extension of trainees’ restricted social world.

The unit has made a systematic and intensive application of behavioural methods, with associated monitoring procedures. Both skills teaching and behaviour modification techniques have been used. Each trainee has had six or seven structured programmes, tailored to individual need. It is seen as extremely important that the highest “level of challenge” is maintained. Thorough monitoring and evaluation techniques have been used. Performance on structured programmes has been rated daily on a five-point scale, the data providing unambiguous evidence of progress over time. Daily diary records have been kept for each trainee, a recent and successful innovation being a system whereby these travel between unit and home each day, families being encouraged to make entries.

Video recording has provided baseline records and evidence of progress, for example, in the modification of severe behaviour problems. This has proved rewarding for relatives and professionals, and is also an effective way of conveying success to any interested person. It may help staff to select priorities and examine their own performance critically.

It is important that the unit has the same “progressive” philosophy as the entire day-care system, and there is a firm expectation that trainees who have acquired skills will move on to other parts of the system. Following the recommendations of NDC Pamphlet No. 5, (1977) the unit has attempted to integrate its work with the rest of the centre, although it is recognised that there is far to go in this direction.

Sited in the centre of Newcastle, the unit has easy access to a range of resources, including shops, cafes, and transport. Visits extend trainees’ experience of the world, enabling contact with people in the neighbourhood. Each trainee has been taken on a summer holiday every year, an enjoyable and valuable experience which is also perhaps the most acceptable form of relief care for the family.

The evaluation data from the first three years have been analysed, the results revealing that the structured

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MENTAL HANDICAP VOL. 11 MARCH 1983

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programming has been successful in teaching skills and behaviours to profoundly handicapped adults, a group whom many still believe cannot learn these. With the exception of the regressing trainee, the least successful has improved on 37 per cent of programmes, the most successful on 78 per cent.

One trainee with a range of unacceptable behaviours, including nipping, rectal digging, and faecal smearing, has been taught to toilet himself correctly. His mother says that, whereas before she had to shampoo the carpet three times a week, she no longer has to do so. Another trainee on entry did not hold a cup to drink from, whereas he now hoIds it with handle between fingers and thumb of one hand with little spillage. A partially sighted girl, with much experience of a hospital environment, was extremely shy and withdrawn. She now initiates communication more often than any other trainee. Successes such as these have supported the findings of researchers that profoundly handicapped people can learn useful skills and behaviours.

U N IVER S I TY OF

KEELE

MASTERS DEGREE IN MENTAL HANDICAP

The Psychology Department offers a one year full- time or two year part-time course, commencing in October each year, which leads to the award of M.A.

The course takes a multidisciplinary approach and considers research, theory and practice within the health, education and social services for mentally handicapped people and their families.

Entry to the course normally requires an honours degree but people with other qualifications may be accepted.

Further enquiries to: Or. N. A. Beasley, Department of Psychology.

Application forms from: The Registrar, University of Keele, Keele. Staffs. ST5 5BG.

Problems and uncertainties: the need for a coherent philosophy

It would have been surprising if an experimental provision of this kind had not encountered problems, many of which remain unresolved.

An area of national uncertainty relates to criteria for placement. It is unclear what the boundary between social service and NHS placement should be. The Jay Report (1979) and NDG PamphZet No. 5 (1977) recommended that no individual should be refused placement in a day centre for any reason. There is also the question of the borderline between the main part of the day centre system and the special care unit. There is a need for a consistent rationale behind the selection of individuals for specific placements given that the population of concern comprises several distinct groups.

Perhaps most important of all, there is a need to develop a clear philosophy which will remove today’s confusion of aims. Practices described as “care”, “recreation”, “educ~tion”, and “work” tend to co-exist, without clear distinctions between them. The need for a coherent philosophy could well be met by “normalisation”, which has shaped services in Scandinavia and the United States. As elaborated, for example, in The Principle of NurmaZisatiun (CMH, 1981) and, most system- atically, in Program Analysis of Service Systems (Wolfensberger and Glenn, 1975) normalisation has the potential for providing the coherence which is essential if well co-ordinated, compre- hensive services are to be developed.

The implementation of normalisation principles presents problems with profoundly handicapped people, of which the issue of age-appropriateness is central. Skill levels and practicable activities tend to be comparable with those found in very young children, yet it is vital, if handicapped adults are to have an ordinary life, that there are no childish connotations in any area of their life. There is unfortunately a lack of suitable age-appropriate materials for educational work.

Clear aims are necessary if problems such as the selection of experiences and activities are to be solved. There is a need for frameworks within which to organise activities in such a way that all clients achieve goals. Goal-setting for an individual requires clear decisions as to the nature of personal needs and related skills, yet it is difficult to identify and teach these without a clear idea of the ultimate aims for that person defined explicitly in an individual programme plan.

There is the question of utilisation of support services. Specialist expertise must be harnessed if optimal progress is to be made, yet how to do this most effectively is unclear. There is an urgent need for research into and development of specialist techniques, as methods in some areas are clearly inadequate.

Comprehensive locally-based services for mentally handi- capped people are an urgent social priority. Many authorities have a great shortage of day care provision, and parents and professionals may need to campaign for this more strongly if the services that are their right are to be provided. It is encouraging that, at a time of severe cutbacks, some authorities are establishing experimental facilities, such as the unit described above which has demonstrated that the many problems involved may be overcome and that, if the courage to experiment exists, the human growth of the most severely handicapped person may be considerably enhanced.

References Report of the Committee of Enquiry into Mental Handicap Nursing and Care.

(3ay Report). Cmnd 7468. London: HMSO, 1979. National Development Group for the Mentally Handicapped. Day Services

for Mentally Handicapped Adults. (Pamphlet No. 5). London: HMSO, 1977. The Principle of Normalisation: a Foundation for Effective Services. London:

CMH, 1981. Wolfensberger, W., Glenn, L. Program Analysis OfService Systems. (3rd edn.).

Toronto: NIMR, 1975. Courses on use of PASS available through Campaign for Mentally Handi-

capped People, London or Castle Priory College, Wallingford.

@ 1983 British Institute of Mental Handicap