Client participation increasing opportunities for severely mentally handicapped adults

JAN PORTERFIELD, Senior Research Officer, Mental Handicap in Wales - Applied Research Unit, The White Houses, 44 Cowbridge Road East, Cardiff

SUMMARY It is very important for severely mentally handicapped

people to use the skills that they have and to be helped to expand these skills. Being given more opportunities for participation helps severely handicapped people lead more ordinary and happier lives.

This article describes ways in which staff of residential and day accommodation for severely mentally handicapped adults can give their clients more opportunities to partici- pate actively in everyday aspects of life such as cooking, cleaning, recreation, gardening and shopping. Ways of organising staff, providing age-appropriate activities, and encouraging even the most severely handicapped to participate are also discussed.

Most severely mentally handicapped people spend their time very differently from most non-handicapped people. One major diffehce is that they are often given very little choice as to how they occupy themselves. Non-handicapped people are usually busy doing a wide variety of things: washing, dressing, cooking, cleaning, shopping, working, playing, and so on. Severely handicapped people, how- ever, are often passively having things done to or for them: such as, being washed, being dressed, waiting for breakfast, waiting for lunch, waiting for dinner. Some- times handicapped people do not have the skills to participate independently. Sometimes they are denied the opportunity to try.

The importance of activity Because severely mentally handicapped people do not

have the opportunity to participate in activities of life, they fill their time with other kinds of activity. Many of the things they do are called “inappropriate”. They may stare into space, pace the floor, bite their nails, scream, cry. sleep, bang their heads, or rock. They do nor do these things because they are mentally handicapped, but because there is nothing else to do. (Non-handicapped people do the same sort of things when they are forced to wait for long periods of time and have nothing else to do). As many severely mentally handicapped people have spent most of their lives with nothing to do it is often difficult to help them break the habit of doing inappropriate things to fill time.

It is important for all people, whether handicapped or not, to practice their skills so that they retain them and become more competent. Practice is even more important for severely handicapped people. Because they are slow learners it takes them longer to learn new skills; and their skills can be quickly lost through lack of practice.

In order for severely handicapped people to participate actively in everyday events, practice their skills, and spend less time doing inappropriate things, it is essential that

staff who work with them (for example, in hospitals, hostels, or day units) provide every opportunity for par- ticipation. This is sometimes very difficult. It is often quicker, easier, safer, and tidier to do things for people than to allow them to do things for themselves. Staff rotas and daily schedules sometimes get in the way of allowing people to do things for themselves. There is often confusion among staff about the function of the setting in which they work, whether it is meant to provide “care” or “teaching”. Sometimes staff feel sorry for their clients and want to do everything possible for them. These good intentions are not always in the clients’ best interest. Time spent being cared for is often boring time.

Organising staff to conduct activity periods If managers and direct care staff agree that encouraging

client participation is one of the important goals of the setting, there are some organisational changes that can be made to make this possible. Research conducted by Porterfield and Blunden (1 978) and Porterfield, Blunden and Blewitt (1980) demonstrated how one hour of the day could be organised into an activity period for severely handicapped adults in a special needs day unit. The activity period was organised so that two members of staff could actively engage a grou of up to 20 severely handi-

teaching and small group activities. One member of staff (the room manager) supervised the

group, provided clients with a choice of recreational and educational materials. such as jigsaws, building bricks, balls, paper and pencil, and so on, and gave social atten- tion, for example, by talking to or praising clients who were using the materials or chatting to each other. Clients who did not participate were given prompts to do things and were then left to rest until they started participating. The other member of staff (the individual helper) worked with individuals for about 10 minutes each, praising, helping and encouraging.

Using this organisation of staff time, client participation increased from 33 per cent to 85 per cent. Staff commented that the clients were much hap ier and that there was a

capped adults, thus freeing ot K er staff to conduct individual

marked decrease in problem be R aviour.

Extending activity periods For the research studies the activity period procedures

were used for only one hour of the day. It is very impor- tant that this way of organising activities be extended throughout the day. This ensures that there are always opporruniries for clients to do things and they do not spend long periods of time waiting for something else to happen. It also ensures that staff have a varied and interesting day, with specific times for supervising the group, working with individuals, conducting small group activities, planning, and record keeping.

The basic principles of this organisation are that: each member of staff knows exactly what to do clients have a choice of activity clients receive attention for participating clients who are not participating are given as little attention as possible.

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The day is organised around clients’ free-time activity. Whenever clients are not receiving individual training, eating a meal, using the toilet, having a bath, or partici- pating in a special activity, they have the opportunity to participate in activities in the “free-activity room”. In this room, staff conduct activity periods as already described, taking turns in being room manager and individual helper for half hour sessions. Any additional staff are scheduled to conduct individual skill teaching, special activities, help clients in the toilet and bathroom if necessary, do planning and record keeping, conduct domestic tasks (accompanied by at least one client who participates as much as possible), and have their own breaks (See p. 96 Client and Staff Sample Schedule and Note). Since “free activity” is continuous, clients move to and from this room whenever they complete or need to undertake any activity outside the room.

Providing age-appropriate activities Providing age-appropriate activities is often a problem

for staff working with severely handicapped adults. Their clients are so handicapped, and there is so little staff time which can be given to individuals or small groups, that they are often given very simple materials which they can use independently. These are usually children’s or babies’ toys.

Using the activity period procedure, staff can provide more opportunities for clients to participate in age- appropriate activities because more staff time is available to work with individuals and small groups. Clients can help make the tea for their own breaks, lay the table for meals, clear away and tidy up after meals, water plants, do simple cooking, gardening and cleaning, go shopping, use community recreational facilities - all activities that non-handicappeh people do every day. A whole range of activities that were previously impossible become easily available. Staff can spend more time helping clients to do ordinary, adult things.

Some clients will be able to do some of these activities independently, or with minimal supervision; others will need verbal instruction, or physical help; others may be able to participate by handing necessary materials to a member of staff who is completing a task (such as laying the table); the most severely handicapped will be able to watch or listen, while the member of staff explains what she or he is doing. In this way every client will be able lo participate in daily activities, or be able to see, hear about, or feel what is being done.

Lunch-time example In many settings every client starts to get ready for

lunch at the same time as the slowest client and waits for him/her to finish in the toilet, in the dining room, and again in the toilet. The staff meanwhile lay and clear the tables. This means that people who can do things quickly and independently must wait for long periods of time, and that staff often rush slow people and do things for them. Because of the way in which staff and the lunch-time routine are organised, most clients are denied opportunities to participate.

To illustrate the impact of organising the day so that free activity is continuous, let us follow two clients through the lunchtime routine.

Example one Sam is vcry severely handicapped, has no speech, and

needs at least some hclp with all of his sclf-help activities. Today it is his turn to help lay the table.

About 45 minutes before lunch Mrs. Jones reminds Sam that it is time for him to go to the toilet so that he

will be ready to help lay the table. She accompanies him to the toilet and helps him toilet and wash himself. She then asks him to join Mr. Lewis in the dining room. Mr. Lewis greets Sam and asks him to lay one of the tables. Sam does not respond. Mr. Lewis gives Sam one piece of cutlery at a time and shows him where to put each one. Mr. Lewis and Sam go to the “free-activity room” to tell the others that lunch is ready.

Miss Allen works with Sam on his self-feeding teaching programme. When he finishes eating lunch about 40 minutes later, one other client is still in the dining room finishing her meal. Miss Allen reminds Sam to clear his place and then to join Mr. Lewis in the toilet. When Sam finishes in the toilet, Mr. Lewis asks him to return to the “free-activity room”. Miss Smith greets him and asks him what he would like to do.

From the time Sam sat down to lunch until he returned to the room took him one hour.

Example two Sheila is one of the most skilled people attending the

special needs group. She will probably be transferred to the ATC in about six months’ time.

When Sam and Mr. Lewis announce that lunch is ready, Shelia puts her lacing project to one side and goes to wash her hands. She then goes to the dining room, where a few clients are already eating, and eats her lunch. She clears her place, then goes to the toilet and washes her hands. She returns to the “free-activity room” where she continues to work on her lacing project.

From the time Shelia sat down to lunch until she returned to the room took her 25 minutes.

Benefit to clients Providing opportunities and time for clients to partici-

pate in all areas of life benefits them in a number of ways. Clients are enabled to:

practice their existing skills so that these are not lost build on their existing skills and get better at doing things

reduce instances of problem behaviour since they arc less bored. The initial organisation of staff and routine takes time

and thought but, once established, this way of organising the day makes it much easier to provide more oppor- tunities for client participation.

References Porterfield, J., Blunden, R . Establishing an activity period and

individual skill training within a day setting for profoundly mentally handicapped adults. 1. Practical A pproaches 10 Developmentul Handicap, 1978; 2 : 10-16.

Porterfield, J . , Blunden, R.. Rlewitt, E. Improving environments for profoundly handicapped adults : using prompts and social attention to maintain high group engagement. Behavior Modiji- cation, 1980; 4: 225-242.

CATALOGUE now available from: Handicapped Persons Research Unit, Newcastle upon Tyne Polytechnic, No. 1 Coach Lane, Coach Lane Campus, Newcastle upon Tyne. Tel: 0632 664061. Introduction by Jim Sandhu-150 playthings and other aids-67 pages, illustrated--1.50 including postage.

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