MENTAL HANDICAP VOL. 13 SEPTEMBER 1985

and the number of steps that are taken to achieve the planned objectives. The AWS is about people , their needs, and consideration for their needs. It is not exclusively about dogma.

Involving parents and professionals The AWS calls for increased parental

i n v o l v e m e n t i n p l a n n i n g a n d implementation of services within counties in Wales. This means that consumers and their representatives will have a say in shaping the services they require. Hopefully, this will lead to an increased accountability on the part of professionals, n o t o n l y i n t e r m s of t h e i r l i n e - management, but in terms of their being able to justify their energies and how they are dissipated in relation to the people for whom they ultimately work.

When parents take an active part in planning and implementing services they

should be given adequate support to acquire the knowledge and skills which will make them competent contributors. They also require resources to enable them to meet the challenges that they will face. It is inadequate and inexcusable for statutory agencies to sit back and expect parents to acquire the necessary expertise, and to secure the resources they need without support and help.

The necessity for learning which has to be undertaken does not fall exclusively upon the parents; professionals must learn to cope with the challenge that an examination of their roles from a non- professional standpoint will bring. They will have to learn to cope with the feeling of being challenged and of having their professional judgement questioned on key issues. In the long term this is for the good of every profession and every professional. In the short term, however, it is likely that

there will be casualties who will fall by the wayside, and who will consider parental involvement to be a detrimental rather than a beneficial contribution. It is of prime importance, therefore, that the statutory agencies accept responsibility for staff development and training to ensure that the situation does not arise where parental involvement leads to professional retreat and a grouping together of professionals constantly on the defensive.

References HMSO. All Wales Advisory Panel on the

D e v e l o p m e n t o f Services for Mental ly Handicapped People. Annual Report 1984. Cardiff Welsh Office, 1985.

Welsh Office. All Wales Strategy for the D e v e l o p m e n t o f Services for Mental ly Handicapped People. Cardiff Welsh Office, 1983.

Setting up a ”Friendship scheme“ Part 2. Feedback from adults with mental handicaps, their families, and the ”friends” linked with them for Ieisureh-ecreational activities

Jodie Walsh

Introduction To us life would seem unbearable if we had no life outside of

work, had no friends or interests outside of our families. Yet this is what we ask of many adults who are mentally handicapped. The following extract mirrors the feelings of many:

“My name is Ann. My age is 30. Although my mind is very slow, I look and have the same kinds of feelings as everybody else. People understood me better when I was younger, it was easier and I’d lots of friends. But now that I’ve got older, I have no friends who understand me. I live with my parents who are getting on. They worry a lot about me.

I spend the long summer evenings alone, watching TV or just lying on my bed. I would like to have a pal who would take me out sometimes and to stay with for a night now and again . . .”

(Walsh, 1984)

In an effort to fill this vacuum which is common to many adults with mental handicaps and based on experience gained from the “Break Away” project (Walsh, 1983), St. Michael’s House in Dublin set up a “model” Friendship scheme (Walsh, 1985). This scheme paired adults with considerable degrees of mental handicap with non-handicapped friends from their local community, who would include them in their leisure/ recreational activities, have them as guests overnight, and/or would share holidays together. The scheme set out to: provide a link for each adult with a special friend outside of the family; enable families to have a rest or a break from caring; and offer an opportunity for people living in the community to share in the care of people who are mentally handicapped. A preparation and training programme for prospective friends was followed by back-up support during the pilot period, at the end of which

information was collected from the adults, their families, and the friends as to the effectiveness of the scheme (Walsh, 1984).

Feedback from the adults For ease of administration, all 25 adults were selected from

one special care day unit which caters for people with moderate and severe mental handicaps. All were ambulant, were able to cater for most of their basic needs, such as toileting and dressing, and had some (possibly limited) verbal or non-verbal communication skills. They were among those least likely to have outside interests. It was felt that if the “model” scheme worked for them, then it might work more easily for adults with lesser handicaps.

JODIE WALSH is a Research Officer at St. Michael’s House, Upper Kilmacud Road, Stillorgan, Co. Dublin, Ireland. 110 0 1985 British Institute of Mental Handicap

MENTAL HANDICAP VOL. 13 SEPTEMBER 1985

At the end of the pilot period, the adults who had speech talked about their friends by name. Most seemed to have become very attached to them, enjoyed going out, and perceived their families as liking and approving of them going out with their friends. The following are some of their comments:

“I llke going out with them. It gives Mammy and Daddy a break, that’s what Mammy wants, she loves me alright, but she needs a p k , she works hard cleaning the house and she goes to Lourdes cause she had me.” “My brother is in New Zealand, my sister is in Galway and my brother is in Spain and there is just me and my sister. Years ago when we were little kids we used to go out together. Anne got her exams and she is teaching and she is very busy.” “Jenna made me beautiful cakes. I ate every one of them. I like her because she’s my friend, she’s good fun. I go back to her house for supper.” ‘‘I wrote to her from Brittas Bay saying I’ll see her when I come home. She wrote to me from England. I’m going to England with her next year. I’m not going to Brittas.” “They like me very much, they like me best. They love me, I love them. They are so good to me, I’m good to them. I’m nice to them.”

Feedback from the adults’ families All of the parentdfamilies felt the Friendship scheme was

helpful to their relative, and all but one felt it was helpful to them. Some felt that there were benefits to the friends too. For some families the scheme meant that they spent time in the kinds of activities they were not normally free to do; for the adults there was broadening of experiences, enjoyment, and a special contact outside their families; and for the friends, the scheme provided a new experience.

All families wished to see their adults continuing to have contact with the friends after the pilot period, and the majority were prepared to meet any expenses the friends would incur. Two thirds of the families said their attitude towards the Friendship scheme had changed since their adult had been involved. Most are now delighted with the scheme, although some still have reservations which need to be worked through.

Their comments included: “Wonderful, she really looked forward to Mona coming to the house and enjoyed the activities.” “Fantastic-I can’t say anything else. All we get all the time is Marian, Marian-I hope she never loses her.” “I was happy that she was well cared for and I like to see her enjoying herself. It gave me freedom - a feeling of no obligation and complete relaxation, knowing she’s in safe hands - it gave me a rest.” “He enjoyed himself. He liked talking about his friend. He learned to travel by bus independently.”

Feedback from the “Friends” The 24 friends involved comprised of adults and families,

males and females, ages ranging from 19-50 years. Some had previous contact with mental handicap; others had no previous contact. A sense of goodwill seemed to be the underlying motivational factor. 23 said they had enjoyed befriending the adult, and 22 wished to continue their friendship after the pilot period. Almost half of the friends had found befriending the adult easier than they had expected.

The friends rated the attitude of their own families as being positive towards the scheme in almost all cases, and several said that they had friends who might be interested in becoming involved in future schemes. The friends felt the scheme had benefitted the adults, the adults’ families, and themselves.

The above remarks should be seen in the light of difficulties the friends had experienced. Two thirds mentioned difficulties of some kind-difficulties in communicating with the adults, difficulties in initially contacting and connecting with the adults’ families, finding the attention they gave the adults at the beginning of the friendship very draining, and having to learn how to “pitch” activities to meet the level of ability of the adult in their charge-all of which became easier as time went on. For the other third, even at the end of the pilot period they were still guessing as to whether the adult was enjoying himself or not, and

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they felt a need for more encouragement and feedback. In this sense the scheme was not self-sustaining, but needed encouragement and support from the organisers.

In terms of the preparation and training programme most of the friends felt they had been given either adequate knowledge of what was involved or had some idea of what was involved for them. The main areas of their advice to organisers centred around giving the adults’ families more preparation, and for the organisers to be involved in the initial link between the adults’ families and the friends. The advice they would offer to new friends considering becoming involved centred around having a go, that “it’s tiring but enjoyable.”

While payments were available for friends, half did not want to accept them. The following extracts give a flavour of the kinds of comments made by friends at the end of the pilot period:

“Sometimes I find Sally very amusing. I don’t know if she means to be or not, but there are times it’s hilarious. I sometimes wonder who takes who out.” “The scheme gave me an appreciation of what is most worthwhile in human relationships.” “I benefitted from her love and her trying to show how she was enjoying the holiday. It was good to see, Ita was so shy in the beginning. She was so full of fun at night and loved music.” “I got pleasure out of entertaining her, especially when she showed clearly that she was enjoying herself.” “It’s the best experience I ever had. It brought joy to Cathy and myself. ”

Conclusion The real challenge the services face in providing for people

with mental handicaps is to transform the “ideal” of community care into “reality”. One way of working towards this might be for the services to take responsibility for teaching recreational skills in the same systematic and structured way as for other areas of the curriculum, and for them to become involved in providing opportunities for social outlets. This approach might reassure parents and help to ensure that the overall quality of life of people who are mentally handicapped is enriched. It could help to achieve one overall aim: to work towards acceptance and integration of people who are disabled into every facet of daily life. References McConkey, R., Walsh, J., Mulcahy, M. The recreational pursuits of

mentally handicapped adults. Znternar. 1. Rehab. Res., 1981; 4: 4, 493- 499. Walsh, J. Break Away - A Study of Short-Term Family Care for Children wirh Mental Handicap. Dublin: Nat. Assoc. for Ment. Hand. of Ireland, 1983.

Walsh, J. Friendship Scheme - A manual to assist you in setring up your own Friendship Scheme. Dublin: St. Michael’s House Research, 1984.

Walsh, J. Setting up a “Friendship scheme”. Part 1. Ment. Hand., 1985;

Note. A manual and videotape describing the scheme and participants’ reactions to it is available from St. Michael’s House Research, Upper Kilmacud Road, Stillorgan, Co. Dublin. Price: f35.

13~2, 58-59.

0 1985 British Institute of Mental Handicap 111