MENTAL HANDICAP VOL. 13 JUNE 1985

Setting up a ”Friendship scheme“ Part 1 . A description of a community based ”model” scheme to link adults with mental handicaps with “friends” for leisure activities

Jodie Walsh

Introduction There is increasing acknowledgement of the rights of people

who are mentally handicapped to enjoy the love and care of family life and freedom to live in the community. The current trend in Ireland is for adults who are mentally handicapped to live with their families and to receive professional and day services. However, little cognisance has been taken of their need for friends, and for leisure and recreational activities, outside of their families. The services do not yet teach recreational skills in the same systematic and structured way as other areas of the curriculum, nor do they provide opportunities for normal social outlets. A survey conducted in the Dublin area (McConkey, Walsh, and Mulcahy, 1981) found that most of the leisure activities of adults with mental handicaps who lived with their families were passive, solitary, and home based:

“Nearly half or the sample did not take part in any activity outside of the family, only one rhird took part in any community activity and only one fifth were reported to have non-handicapped friends”.

What is the “Friendship scheme”? In an effort to improve the quality of life of adults who are

mentally handicapped, provide support for their overburdened families, and use resources within the community, St. Michael’s House - a day service provided to 1,000 children and adults in Dublin City and County - set up a “model” Friendship scheme. This scheme paired adults with moderate or severe mental handicaps with non-handicapped “friends” from the local community who volunteered to include them in their recreationaVleisure activities, to have them as guests overnight or for weekends, or to share a holiday together. The scheme was seen as a step towards meeting, not special needs, but ordinary, basic, and primary needs of all human beings - particularly the need to meet new friends and broaden their experiences - which, in relation to people with mental handicaps, have been largely overlooked.

Who needs this service? Many adults attending St. Michael’s House services, with

varying levels of ability, have no social outlets whatsoever. However, for ease of administration, in the “model” scheme the adults selected were all from one day unit catering for people with moderate and severe degrees of handicap and providing day activities for individuals unsuitable for open employment, long- term training, or sheltered employment. These adults were most unlikely to have outside interests, and it was felt that if the scheme could work for them then it might more easily work for people with lesser handicaps.

All of the adults met the basic selection criteria: (a) they were ambulant, were able to cater for most of their basic

needs (such as toileting, dressing), and had some verbal or non- verbal communication skills (albeit limited in some cases);

(b) they could benefit from a break, or from having a friend with whom they could become involved in activities;

(c) their families were likely to be in favour of, or at least agreeable to, the idea of them going out with a friend, believing that they needed or could benefit from the scheme.

Who could get a scheme going? The most efficient way of staffing the scheme was with

existing personnel and skills. The author worked as a Resource Person responsible for organising, monitoring, and obtaining feedback on the scheme, in addition to preparing the adults and linking them with friends. In other settings this role could be taken on by recreational therapists, volunteer coordinators, or staff from within the unit. The resource person worked jointly with the head of unit and her staff, who had detailed knowledge of each adult and who was responsible for providing the friends with information about individual adults and for helping them get to know the adults. The social worker attached to the unit, who knew each individual’s family circumstances, was responsible for linking the friends with the adults’ families. How were the friends found?

Previous experience from “Break Away” (Walsh, 1983), a successful “model” scheme which linked children with handicaps with families in the community for a short holiday stay, indicated that there were people who were willing to share in their care and who enjoyed doing so. The present scheme aimed to explore whether there were people who were interested in becoming an ongoing friend of an adult with a moderate or severe degree of mental handicap, and whether this concept was feasible.

A publicity campaign was launched, a brochure designed, and local newspapers and radio informed about the loneliness of some adults with mental handicaps and their need for a friend. Brochures were sent to individuals and agencies at local level who might be interested. It was made clear that friends did not need to have any previous experience of or contact with mental handicap - they would be given all the preparation and information they needed, professional back-up support on a 24-hour basis, and their expenses would be paid on the basis of IRE5.00 per contact. Friends could be all age groups, single or married, male or female. What commitment was being sought from the friends?

People interested in becoming friends were asked to attend a public meeting where they would be given more general information on the scheme and, if interested, could complete an application form. They were then asked to attend a preparation programme, one evening a week, on four consecutive weeks. Following this they would decide, with the scheme organisers, whether being a friend was a feasible concept for them.

Those who opted into the “model” scheme were asked to commit themselves to (approximately) 10 contacts with the adult they would befriend during a pilot period of four months. This was done to ensure all friends were committed to giving the scheme a proper trial. It was made clear that each friendship could take on its own momentum, and that the type and extent of content could be individual.

42 people attended the public meeting and completed application forms.

What kind of preparation did the friends get? In designing a preparation programme the organisers sought

JODIE WALSH is a Research Officer at St. Michael’s House, Upper Kilmacud Road, Stillorgan, Co. Dublin, Ireland.

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58 0 1985 British Institute of Mental Handicap

MENTAL HANDICAP VOL. 13 JUNE 1985

to strike a balance which would ensure the right people were encouraged to participate in the scheme. A group-based programme was undertaken, this being seen as the most efficient way of providing both information and at the same time a support group for prospective friends. The group met one night a week for four consecutive weeks.

The theme of the first evening was assessment. The aim was for the organisers to get to know the friends and to clarify in their own minds their motivations and suitability. It was a chance, too, for prospective friends to decide whether being involved in the scheme was appropriate for them or not. The theme of the second evening was information on the adults in the scheme. A videotape was shown of the adults in the scheme. Staff who work directly with them spoke of their different personalities, needs, resources, likes, and dislikes. On the third evening the friends went ro visit the adults in the day centre. This meeting was activity-based and gave an opportunity for the adults and the friends to get to know each other in a variety of settings, for example, doing crafts and attending a disco. Food was provided and there was plenty of time for dancing, chatting, and a sing- song. On the fourth evening the friends selected the adult or adults they would most like to befriend, and informed the organisers of those they would least like to befriend or felt they could not manage.

At the end of the preparation programme prospective friends who felt that they either did not have the necessary skills and resources, or who did not feel able to make the commitment, opted out on their own initiative. In all 25 adults were paired with 24 friends for the “model” scheme.

Following a meeting with adults’ parents and families the resources and needs of the friends were matched with the resources and needs of the adults and their families. Once the friends, adults, and families had met, and all were happy to become involved in the scheme, the friends and the adults’ families were asked to sign legal contracts and insurance was arranged for the scheme.

Who took part? 25 adults were either moderately or severely handicapped.

One was partially sighted with problems in mobility, two had partial hearing, two had epilepsy (one with recurring epileptic fits) and 15 had Down’s syndrome. 24 had been attending a special care unit daily for four years or more. Three quarters were women. Over half were in their thirties and forties and slightly over one third were in their twenties.

The 24 friends ages ranged from 16 to 40 years. 15 were single adults (13 women and two men), eight were families, and one was from a religious order. Half had no previous contact with mental handicap. Friends with previous experience included some who had worked in the services, attended special clubs for people with mental handicaps, or visited or done placements in the field of mental handicap. Others had a handicapped relative, and one had worked in a factory which also employed people with mental handicaps. Their occupations were varied, but many were professionally qualified and some had skills which may have been of advantage to them in their role as a friend, for example, two were nurses, three teachers, one an occupational therapist, one a guidance counsellor, two social workers, and two were psychology students.

How did the scheme operate? The organisers considered that the scheme should operate

comparatively independently of them. However, they would need to know how friendships were going, and because of the adults’ degree of handicap they would need to give encouragement and support to the friends.

The friends contacted the adults and their families directly, and between them they decided when to meet and what activities were the most suitable. The organisers were not involved in arranging contacts. They did, however, contact the friends periodically and provided whatever support and encouragement was necessary. A 24-hour telephone service was available

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through a residential hostel run by St. Michael’s. Also, during the pilot period a social evening was organised for friends and adults to get together, and thus provide support for one another. These support structures were seen to be important, especially to friends of adults with severe handicaps, many of who would not be receiving much, if any, encouraging feedback from the adults themselves.

Contacts were monitored by the friends completing a voucher for each contact giving information on: the type of activities, how they felt the contact went, what the highlights had been and whether there had been any problems. Friends submitted these vouchers to the organisers after every five contacts, and received payment accordingly.

How did the scheme work out? The scheme worked exceptionally well. The adults, their

families, and the friends all wanted to continue contact beyond the pilot period. As a model it indicated that pairing an adult who is mentally handicapped with another adult in the community is feasible and can provide benefits to all concerned. This project is seen as one small step towards integration and normalisation, which directly improves the quality of life of adults with mental handicaps. Variations of the scheme could include fostering, crisis relief, and holiday opportunities. Following a seminar held by St. Michael’s House at the end of the pilot scheme, about 30 services and concerned groups throughout Ireland are using this basic model of setting up a scheme, adapting it to meet their particular needs, resources, and interests. References McConkey, R., Walsh, J . , Mulcahy, M. The recreational pursuits of mentally handicapped adults. fnrernar. J. Rehab. Res., 1981; 44,493-499. Walsh, J. Break Away: a study of short-term family care for children with mental handicap. Dublin: Nat. Assoc. Ment. Hand. Ireland, 1983.

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: E35.

@ 1985 British Institute of Mental Handicap 59