MENTAL HANDICAP VOL. 14 SEPTEMBER 1986

Age in years 1%-4 5-9 10-14 15+

Number 14 26 17 10

Special care?

Total

67

Community services received by the families of children severely handicapped by tuberous sclerosis

Ann Hunt

SUMMARY The community services received by 67 children

severely handicapped by tuberous sclerosis were investigated by interviewing their parents. 60 per cent of the children at school were in special care units, and 81 per cent had multiple handicaps. 25 per cent of parents had no contact with community services, and 45 per cent no contact with a social worker. This had implications for the large number of parents who did not receive respite care. It was more difficult for adults with multiple handicaps to receive care in the community.

Introduction Although community services for people with mental

handicaps have increased within the last 10 years, many of the services for those with additional physical, sensory, or behavioural problems are still provided within hospitals. These extra handicaps are often found in children with rare congenital disorders that produce structural abnormalities of the brain.

One such disorder is tuberous sclerosis, a genetic condition which affects one in 10,000 children (Hunt and Lindenbaum, 1984). Small areas of abnormal tissue are formed in the brain which calcify, but can continue to grow slowly throughout life. These brain lesions can cause early and intractable epilepsy and, with the seizures, developmental delay. Many children severely affected experience early myoclonic seizures (infantile spasms) (Hunt, 1983), following which a common behaviour pattern emerges of overactivity, autistic and obsessive behaviour, and communication problems (Hunt and Dennis, in press). Such children pose great management problems within their families who require considerable community support if they are to remain at home.

As part of a larger survey of the effects of tuberous sclerosis, information was collected on 90 children and their families, including services received and respite care. There has been a rapid growth in the provision of respite care in the community, but not all families take advantage of it. Relatives and neighbours may help but, as was found in Salford (Wilkin, 1979), it should not be assumed that t h i s network of unofficial care is always available. For some families, however, especially those whose child is multiply handicapped, the only respite care offered is sti l l within a

hospital. If the family is ambivalent about the child’s handicap, the sight of other children with severe handicaps may be too painful for them and they may avoid it by a denial of the family’s need for respite, however obvious that need may be to people outside the family. Less than half the families of children with severe handicaps in the survey were found to use respite care.

Method of survey The parents of 90 children with tuberous sclerosis were

contacted through the Tuberous Sclerosis Association. They were interviewed in 1980-81 using a semi-structured questionnaire. They lived in m y areas of England and in the Strathclyde Region in Scotland. Sixty-seven of the children, aged from 18 months to 24 years, were severely mentally handicapped (see Table 1). Children younger than 18 months were not included in the severely handicapped group as it is difficult to predict their developmental outcome.

Results Specialist and day services All 67 children were receiving specialist medical care from,

for example, paediatricians and child psychiatrists. The eight youngest children received teaching at home or through weekly visits to an assessment centre or opportunity play group. Their parents were appreciative of these services.

55 children attended schools for children with severe learning difficulties, 33 (60 per cent) of whom were in the special care units of those schools. Of these, 16 could neither walk nor talk, while 17 were very mobile and needed special care because they were unaware of events in their surroundings and had little ability to communicate. All 55 children at school had epilepsy and 39 (70 per cent) were not speaking a single word. This compares with Mittler’s (1981) study of children in ESN(S) schools in North West England. He found 24 per cent had epilepsy and 23 per cent had no speech.

Four older children had left school. One was attending an adult training centre (ATC), but one was in day care at the local mental handicap hospital. One 17-year-old was at home all the time as there was no special care place at the ATC and

ANN HUNT is a Research Worker with the Human Development Research Unit, Park Hospital, Headington, Oxford and Chairman of the Tuberous Sclerosis Association.

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MENTAL HANDICAP VOL. 14 SEPTEMBER 1986

his parents refused to accept day care in hospital. The remaining 18-year-old had been at home since she was 12 because of her disturbed behaviour.

38 (57 per cent) of the 67 children were mobile and their parents reported severe behaviour problems in the home. Only 13 (19 per cent) had few problems other than developmental delay; even they had epileptic seizures. The other 54 (81 per cent) can be regarded as being multiply handicapped. Their families can be expected to need considerable support and help in their management, with a high level of professional contact.

Parents of the 67 children were asked about the contact they had with professional workers. Health visitors saw 26 (38 per cent) of the children, mainly the younger ones or those requiring incontinence aids. Nine parents had contact with community nurses for the mentally handicapped and found their advice relevant and helpful. As parents were interviewed in 1980-81 the number of community nurses would be expected to be low. The families of 37 (55 per cent) children had contact with a social worker. Such contact ranged from eight who had only a name and telephone number to call in emergencies, through to those visited once a month. 30 families (45 per cent) had no contact with social services departments.

17 families (25 per cent) had no contact at all with community agencies, except schools, and this had implications for the provision of other forms of support, such as an awareness of the Attendance Allowance and other benefits. One mother, with three children profoundly handicapped, only came in contact with a social worker when her oldest girl began to attend a day centre at the local hospital at 18-years-old, too late to benefit from the Rowntree Family Fund.

Respite care 61 of the children lived at home. 53 parents knew that

respite care was available in their area. 27 used this care, 26 did not. However good local respite care is, parents must be able to accept that their child is handicapped before they are ready to use it, because short term care is not part of “normal” family life. Parents may need help to be able to give themselves permission to take the initial break without seeing themselves as uncaring people. One mother was first offered help in the local hospital. She said: “She was booked into the local subnormality hospital one weekend but we couldn’t leave her - I came out crying, it was so awful to think a child of mine had got to be left there”.

Seven children were under six years old and were considered by their parents to be too young to be left away from home. When other children begin to be more independent of their parents, at about the age of six, parents of children who are handicapped start to consider their own needs. One parent of a six-year-old said, “I’ve been looking at the local hospital - I’m beginning to realise we can’t go on for ever without a break”. Once the use of respite care is established, parents cease to feel guilty and appreciate the help it gives. The parent of a nine-year-old remarked, “Parents need to lead their own life sometime. People make their own problems by deluding themselves about a situation. The sooner you accept it for what it is, the sooner you get on with living.” Several of the most difficult children were not having care because a single unfortunate experience had made parents unwilling to face exclusion again. One said, “The private home wouldn’t have him. In the mental

handicap hospital he bit the other patients and doctors, so we were asked to take him away”.

Two of the three families not using the respite care offered for their older (16+ years) children were refusing because it was in hospital. After many years dutifully caring for a child at home it can be a shock to find that genuine community facilities are no longer available when the child becomes an adult. The child who could be looked after in a children’s hostel does not always have the higher level of self-care skills generally required for an adult hostel.

Eight per cent of parents who used respite care reported that they took tranquillisers, but 63 per cent of non-user parents relieved stress in this way. 78 per cent of users of respite care were in contact with social workers but only 35 per cent of the non-users. It needs professional intervention to introduce a family initially “into the system”. Perhaps it is not surprising that, whatever their problems, the families not known to the community agencies were those not getting respite care.

Discussion These 67 children severely handicapped by tuberous

sclerosis represent a larger group of people with multiple problems. Their parents require continuing advice and support as many of the children have physical problems or bizarre, disruptive behaviour . Planning for community services requires knowledge about prospective clients, and only direct contact with families can give a true picture of the needs. Many people with severe handicaps may have rare conditions, and the implications of the diagnoses may not be properly understood b y planners.

Although specialist and day care facilities are comparatively well-used, it seems that families need greater contact with social workers, and other community workers such as community mental handicap nurses, if they are to accept their need for respite care and to use it initially.

Many families whose children are multiply handicapped live for years under the kind of stress that would call for crisis intervention in “ordinary” families. Society cannot claim to be giving special care to people with multiple handicaps when so many families in this study were found to have no contact with community provisions.

Acknowledgements The author wishes to thank Dr. Renate Barber for helpful

discussions. This work was supported by grants from the Yudkin Research Trust and the Tuberous Sclerosis Association.

REFERENCES Hunt, A. M., Lindenbaum, R. H. Tuberous sclerosis: a new

estimate of prevalence within the Oxford Region. J. Med. Genetics, 1984; 21,272-277.

Hunt, A. M., Dennis, J. Psychiatricdisorderin childrenwith tuberous sclerosis. Dev. Med. & Child Neurol., 1986, (in Press).

Hunt, A. M. Tuberous sclerosis: a survey of 97 cases. 111: Family aspects. Dev. Med. & Child Neurol., 1983; 25, 353-357.

Mittler, P., Preddy, D. Mentally handicapped pupils and school leavers: a survey in North West England. In Cooper, B. (Ed.). dsseSSiag the Handicaps and Needs of Mentally Retarded Chilaken. London: Academic Press, 1981.

Wilkin, D. Cariag for the Mentally Handicapped Child. London: Croom Helm, 1979.

112 @ 1986 British Institute of Mental Handicap