MENTAL HANDICAP VOL. 11 DECEMBER 1983

Helping parents manage difficult behaviour

Steven Bland Roberta Hayes

SUMMARY The authors describe the setting up and functioning of a team, working from a school for children with severe learning difficulties, specifically to aid parents manage difficult behaviour from their children and to promote the development of appropriate skills.

The project in question was set up in the Autumn Term of 1980 because a number of families were experiencing extensive problems in dealing with the behaviour of their children at home. These families had usually sought help from various sources but either had not found an agency with the necessary expertise to help, or, if such skills were available, the necessary time for in-depth involvement was not.

At the time a hospital team already operating a pre-school Portage system had been joined by a teacher seconded by the Education Department; a pilot project was therefore set up to look at the feasibility of identifying and assisting families in need of help. The project team members, all of whom are experienced in working with mentally handicapped people in a multidisciplinary context, comprise:

area educational psychologist (chairman) headteacher teacher representative (on a termly rotation) specialist social worker (for families wi th menta l ly hand icapped children) community nurse seconded teacher.

Other professionals attend team meetings (which are held every three weeks after school) when they can.

The aims and method of working The principle aim is to teach parents

simple behaviour management skills so that they can deal more effectively with their children. The team’s approach is different from that which is usually reported as being offered to such families; when parents meet as a group on a fairly

formal course and are taught a number of behaviour management techniques over several sessions; or a professional (usually an educational psychologist or a social worker) might accept a referral and visit a family regularly to advise on particular management problems. The novelty in the present approach is tha t various professionals, who have knowledge of the chi ld , meet together to exchange information and plan intervention. Various members of the team might also meet the family, and joint planning and responsibility within the team provides support for the individual home visitors appointed (usually the seconded teacher or the community nurse).

The project is seen as having an “enabling” role - helping adults to become more effective in managing children’s problem behaviour in the home si tuat ion. The key feature is that structured interactions with the child are intended to be carried out solely by the non-specialist (parent, care officer, and so on) although modelling of management strategies by the home visitor is sometimes agreed to be appropriate.

When a referral is received (an L‘open’’ referral system is used - anyone can bring forward a family in need of help) the information supplied, together with any appropriate information from individual team members, is discussed. An initial visit is then made to the family home by the social worker in order to form views about the family group generally, their inter- relationships, and their perceptions of the child’s strengths and weaknesses; some estimate may also be made of the family’s motivation and intention to produce change. At the following team meeting the initial views of the social worker are

STEVEN BLAND is a special education adviser for Clwyd County Council at Shire Hall, Mold and ROBERTA HAYES is a social worker at Broughton Hospital, Broughton, Clwyd.

discussed further, and usually a home visitor is appointed who accepts specific responsibility for working with the family.

Social work involvement does not end at that point; regular (if not always frequent) contact continues. The social worker, who is a specialist with families of mentally handicapped children, describes the general aim of her work as to attempt to enable the family, which includes the handicapped member, to live as normal and satisfactory a lifestyle as possible. This involves close cooperation with the project team home visitor, who deals with the specif ics of managing behaviour difficulties and the development of individual skills. Family problems

The sort of problems the majority of families referred to the project team have faced can be included under the following headings: Finance

Some families were unaware of their rights to financial assistance from statutory agencies and from voluntary funds.

It is often difficult to negotiate with statutory bodies and families needed advice on how best to do this. (They were also advised how to acquire specialised equipment f rom these sources if appropriate). Social isolation

Several families were limited in their social contacts by the presence of their handicapped chi ld . Relatives and neighbours were often unwilling to “baby sit’’ or to take the child for a few hours; one mother, who lived alone with her Down’s syndrome teenager, had a complete lack of social acquaintances.

Often the sense of isolation begins when t h e c h i l d is b o r n , a n d un le s s encouragement is given to join in parents groups, at playgroup or school, it worsens. Encouragement of the use of day-care facilities, holiday or week-end care in the specialist hospital, hostel or community unit, and suitable fostering schemes enables parents to have opportunities for a more normal social life. Anxiety, depression, and mari ta l disharmony

The level of care and devotion of many pa ren t s , of ten under dis t ress ing circumstances, was evident. This was

166 0 1983 British Institute of Mental Handicap

MENTAL HANDICAP VOL. 11 DECEMBER 1983

Home visitor introduced. Problems identified, defined. Priorities agreed.

.

. ’

- Baseline data obtained. . , - Reinforcements agreed.

> . Programme implemented and - , . monitored. -

sometimes reflected in their anxiety about the future of the handicapped person once they were no longer able to care for him.

The social worker counselled the families about this, offering some part- time separation (such as suggested above), and aiding families in having appropriate long-term expectations.

Two cases of severe clinical depression in parents were apparent and appropriate help was sought; but many good reasons for parents to be depressed were noted. Disagreements over management of the child were frequent, and a tendency of working fa thers to “opt ou t” of responsibility for this involved the social worker in further counselling sessions.

Figure 1. The intervention model

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Expectations and attitudes Some parents’ expectations of the

children were inappropriately low and they tended not to offer adequate experiences for the development of certain skills. Over-protectiveness was evident, and the fact that the children were severely limited intellectually was often used as a reason for behaviours such as head- banging. Members of the extended family, who generally had limited contact with the problem situation (and therefore limited understanding of the difficulties) often made too many allowances and too few demands on the handicapped children.

The social worker advised parents on dealing with their own parents, sometimes

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Referral made.

Social worker

reports back , visits and Project team discusses case information and decides on action. -

.

- I Situation reviewed. Programme successful?

TABLE 1. The 10 major problem categories

Family Aggression to self/ self stimulation Aggression to others Attention seeking Distractibility Feeding problems Inappropriate shop behaviour Sleeping problems Temper tantrums Toilet problems Lack of self-help skills generally

1 2 3 4 5 6 7 : : : : 1 2 1 3

* * * * * * * * *

* * * * *

* * * * * *

* *

* * * * * *

1 * * *

involving the extended family in discussions of the overall management of the child.

Where such family discussion is not possible, it is important to encourage the mother to have the courage of her convictions. Sadly, many mothers feel they are to blame for the failures of their child and accept the criticism of their p a r e n t s a n d h u s b a n d . T h e y a re encouraged to develop a “fighting spirit” as, without the confidence of the mother, all the team’s work can be fruitless.

Structuring intervention in the home The first task for the home visitor is to

help the parents define their problems in operational, behavioural terms. A list of problems is obtained, priority areas decided upon, and an initial target defined (this may involve the elimination of a particular problem behaviour or the teaching of a certain skill).

As shown in Figure 1 reinforcements are discussed and agreed and baseline data obtained, using structured observation where necessary, and carried out whenever possible by the parents. The various stages of the process are shown as well as the need for feedback at each stage and ongoing advice and support for the home visitor from the other members of the team. The situation is reviewed at the regular school meetings and, if the initial programme has been successful, a further area of difficulty at home might be tackled. If there have been problems and therefore little or no success, an alternative strategy is agreed by the whole team for the home visitor to try instead.

Referrals to date 17 referrals have so far been made to the

team and some involvement of team members has occurred in each case. Behav ioura l p rog rammes were inappropriate in four cases but team members still had regular contact in order to assist the families in other ways.

The children referred have varied in age from 4 years 10 months to 15 years 2 months, with a mean of 10 years 10 months. Each family reported its own individual pattern of difficulties at home, but the reported problems generally fall into 10 categories. Table 1 shows the problems experienced by the thirteen families with whom in-depth involvement and behavioural intervention has taken place.

From the interventions which have taken place in the 13 families team members consider that objectives have been achieved in each case; in those where most time has been spent improvements have been considerable, and even dramatic. A second article detailing one particular case, to be published in the next issue of Mental Handicap, will show how the team’s interventions have been of help.

@ 1983 British Institute of Mental Handicap 167