A Community-Based Rehabilitation Training Workship at PROJIMO
A “Learning by Doing” Workshop for Liliane Mediators in Mexico
From March 3 to 5, 1998, disabled village rehabilitation workers at PROJIMO facilitated a training seminar for “mediators” representing Stichting Liliane Fonds (SLF), a Dutch foundation that helps disabled children in difficult circumstances.
“Mediators” are volunteers, backed by local organizations, who find disabled children with urgent needs and arrange for them and their families to get essential support from SLF. The mediators are often nuns, community leaders, social workers, nurses, or other persons who have a concern for the well-being of disadvantaged children. One purpose of the workshop was to have an interchange of experiences among mediators from different programs in Mexico, concerning the concepts and practice of community based rehabilitation (CBR)—with hopes that all of us might take a more enabling, integrative approach to meeting the needs and possibilities of disabled children.
The 3-day workshop was attended not only by mediators and prospective mediators from different parts of Mexico, but also by a large number of disabled children and their parents. The inclusion of many disabled children and parents in the workshop was important not only because the strong participation of such persons is key to success of CBR, but also because, with their presence and participation, the workshop could deal in a practical, hands-on way, with the real needs of individual children and their families— through a process of learning by doing.
Altogether, the workshop was attended by over 60 participants—half of whom were themselves disabled. (A special effort was made to have strong representation by disabled persons.) Most of the visitors stayed with village families, who cheerfully cooperated. To transport visitors from the city of Mazatlan to the village of Ajoya (nearly 100 miles away), the municipal president provided a government van. With these different forms of local assistance, overall costs for the workshop were kept quite low.
Strong input by disabled children and their parents in the Mexico workshop
One of the needs expressed by both children and parents was for the children to become as self-reliant as possible.
For the seminar, we followed a program of events fairly similar to that of our 3-day workshops in the Philippines in January, 1998 (see Newsletter 37). However, the slide shows (on PROJIMO and Child-to-Child) were held after dinner in the evenings, and local villagers were invited to attend, as were all of the visiting mothers/fathers with their disabled children. Also, instead of using overhead projections, the PROJIMO team demonstrated actual examples of appropriate (and some inappropriate) aids and equipment they had made. The parents of Cruz Astorga participated for 2 days, and 3-year-old Cruz proudly showed everyone how he used his special cardboard seat and standing frame.
One of the most worthwhile events took place on the second day, when participants met with the disabled children and their families, to discuss the felt needs, hopes, and wishes of the children and parents, and the barriers and difficulties they faced in trying to meet those needs. The facilitators used the questions on a new, experimental report form (which had been tested in the Philippines) as guidelines for helping the mediators and families take a holistic view of their children’s needs and to draw up a comprehensive plan of action. This approach was appreciated by the participants, who found it quite useful. One of the needs expressed by both children and parents was for the children to become as self-reliant as possible.
Making assistive devices for individual children
The last day of the 3-day seminar was mainly devoted to a hands-on workshop in which the mediators, together with parents, designed and made assistive devices for the disabled children present. This activity went surprisingly well. However, it was in some ways even more chaotic than in the Philippine SLF workshops, due to the large number of disabled children and parents present, and the relatively small number of mediators. However, the disabled shop workers at PROJIMO (both in the rehab program and the new work program) were very helpful in assisting the seminar participants. Some quite useful and creative aids and equipment were made.
In conducting the assistive device workshop, the children’s needs were assessed, plans for development/assistance were made, and equipment was designed and constructed for 11 children. By good luck rather than planning, the dynamics worked out especially well. At the suggestion of the participants, only 3 work groups were formed, each with 3 or 4 children and their parent(s) and 3 to 5 mediators/co-mediators/potential mediators. This placement of several parents and children in the same group allowed both for a lot of interaction and suggestions among the parents involved. It also led to greater confidence and participation by the parents—and to some extent, the children—in the problem-solving process. (In the Philippine workshops, each group of mediators had worked with only one child and his or her parents, so the interaction between the parents of different children did not take place.)
Most of the children had cerebral palsy. Equipment made for the children included 2 standing frames and 4 special seats. One seat was specially designed for a child with dislocated hips who became uncomfortable after sitting upright for 15 minutes. The seat had an adjustable-angle back-rest to allow the child to shift easily between sitting upright and reclining. Two seats had variable-height back-rests so that the children could sit with a low back-support to improve trunk control, then relax with a high back-support.
The wheelchair of Virginia, a girl with brittle-bone disease, was modified so her feet could reach the foot rests (which had been too low for her short legs.) A table was also built for Virginia’s wheelchair, which makes it easier for her to write to her “pen pals:” 3 sisters with brittle-bone disease in the Philippines. (See Newsletter #37).
Five children were evaluated for the need of orthopedic appliances. Participants took part in planning the braces and helped PROJIMO workers cast the children’s legs. Four children were fitted for wheelchairs, which were later custom-made by the PROJIMO work-program team. Also, the pregnant mother of three children with muscular dystrophy helped the PROJIMO team design a tricycle with a carrying seat for three children (plus a “crib” for the fourth baby to come.)
As in the Philippine workshops, most mediators had little experience in evaluating needs or making equipment for disabled children. As a result, some of the devices they made had problems. But the plenary session and discussion at the end of the workshop, with the children and parents using the equipment, was a good learning experience for all—in some ways, much better than if the equipment had been problem-free.