An Evolutionary Perspective on the Development of a Parent Association Child Amputee Support Society

ELEANORA SIMONS*Society for Crippled Children and AdultsWinnipeg, Manitoba

As a rehabilitation counsellor on a multidisciplinary prosthetic clinic team at Children's Rehabilitation Centre in Winnipeg, I have been involved with a group of parents since 1978. These people chose to form an association a year after meeting together. At present, the association has 28 active family members and to associate members.

The original group of 10 families was established because of my concern that parents of children born with limb deficiencies had never had an opportunity to meet together to express their concerns or share their experiences.

Problems expressed at the first few meetings appeared to be mutual. Discussions were guided with the assistance of another agency counsellor. Concerns included:

  1. Lack of information and support at the time of their child's birth left parents to cope alone until they were referred to the prosthetic clinic, three to six months afterward or, in some cases, even later.
  2. At the time of birth, how does one, without knowledge, explain the deficiency to family and friends, and how does one deal with their initial reactions?
  3. When a child begins to question, what is the best way to explain? For example, "When will I get toes like Billy?"
  4. How, in time, does one teach these children to handle questions from their peer group?
  5. How should child amputees be introduced to the school system? What is the best method of. proceeding, in order to prevent continuous questions and teasing from other children?
  6. Why are services offered through a multidisciplinary clinic team? What is the purpose of such clinics and reasons for some of the procedures? For example, facing members of the clinic team on the first visit to clinic is awkward, especially if, as in some cases, parents have no knowledge of clinic procedures prior to the clinic appointment.

To answer parent's questions with regard to the multidisciplinary approach, I arranged presentations by members of the clinic team: physician, physiotherapist, occupational therapist, prosthetist, and rehabilitation counsellor. These discussions enabled parents to express their concerns, likes, and dislikes of clinic procedures. and to become more aware of the role of their counsellor in assisting them with the social and emotional aspects of rearing children with limb deficiencies. Team members became more cognizant of the parents' concerns.

In the original group, the majority of parents attending had children under the age of 6. These parents requested meetings with parents of older children. The agency became involved in a newsletter informing both urban and rural families who attend the clinic of the group's request and invited their participation at the next meeting. The response was fairly encouraging, especially from urban families.

As the parents of older children shared their experiences and expressed different concerns, it soon became apparent to the entire group that they could influence and improve services for their children better by joining forces and forming an association.

Officers were elected, committees formed, and a constitution approved. The group became the "Child Amputee Support Society" in 1979. The official purpose and goal of the Association are:

"The Association believes that every child with an amputation has the right to all the expertise, assistance and technology that is available and that, accordingly, the object and purpose of the Association shall be to coordinate and focus the efforts of the parents and others towards this goal."

In 1980, the Association was distressed that provision of myoelectric limbs was determined on an individual basis, depending on financing through a service group. At that time, the service groups were requesting a means test. The concern led the Association to present a brief to the Provincial government, requesting myoelectric limbs be made available to every child who could be successfully fitted and that the costs for provision of this service be met through the Provincial Health Plan.

The brief was not pursued after the Variety Club of Winnipeg consented to fund the provision and servicing of myoelectric prostheses through the Limb Bank, which they founded at Children's Rehabilitation Centre. The Variety Club agreed to maintain each child in myoelectric prostheses until the individual became 21 years of age.

While the brief was being prepared, the Association continued to grow in knowledge by having such speakers as geneticists, physicians, members from handicapped recreational groups, and adult amputees at their meetings. More recently, Association members have summarized articles on children with limb deficiencies. Original concerns continue to be addressed.

Currently, the Association has two major projects:

  1. To prepare a pamphlet outlining support and services offered by the Association and other agencies in the community. This will be distributed to physicians' offices, hospitals, and health units, and made available to parents of babies born with deficiencies, thus enabling parents to gain support earlier.
  2. To prepare a brief for presentation to the government, requesting that maintenance and replacement of myoelectric prostheses become the responsibility of the Provincial Health Plan after the individual reaches the age of 21 years.

The Association, now in its fourth year, continues to offer to its members support and understanding. It contacts new families referred to the prosthetic clinic.

Through the cooperation of the rehabilitation centre and the clinic team, the Association members have developed better methods of communicating and sharing mutual concerns. I have found the Association an excellent method of involving parents in the planning of services for their children.

Child Amputee Support Society

It is my hope that the Association will continue to grow and develop in its efforts to provide understanding and support to others.

Comments from the Clinic Chief, David Lyttle, M.B., F.R.C.S.(C )

Formation of an association of the parents of the 85 children attending our prosthetic clinic was encouraged by the members of the clinic team who saw the organization of consumers as a possible means of improving the funding of prosthetic services through public pressure upon a government which fully funded all essential orthotic and prosthetic appliances (excluding externally powered prostheses) through a health services insurance scheme. The advantages of such funding in comparison to that of voluntary organizations are considerable. Voluntary donations have in the past been raised by bringing the plight of the affected children to public attention, often with exaggeration and manipulation of medical facts for the sake of eye-catching appeal and sympathetic publicity. It is apparent that subjects chosen for such publicity do undergo personality changes which are not always advantageous. Unfortunately, the association of parents has been diverted into accepting voluntary donations instead of changing the health services insurance scheme to the advantage of their children, although the latter remains an ultimate goal.

A more positive effect of the organization of parents has been in the dissemination of information about the developmental and physical capabilities and realistic goals for their children by comparison of their personal experiences with those of others. Sometimes this can occur at times of clinic visits but is more effectively happening at meetings organized for this purpose. The appraisal of clinic methods by the users is something that clinic chiefs and clinic members can benefit by, as traditional formats for conducting such clinics are not essentially the most effective in modern times. Exchange of ideas about clinic formats makes parents aware that professional workers must be present at clinics, in order to develop the very knowledge and skills which are needed to care for children with congenital and acquired limb deficiencies adequately.

It is important that the parent support group should not be led by an institutional employee or by a physician, but should develop with independence and discover that there are ways in which they can aid their children to develop into happy, independently successful members of society, and that there are ways in which they can help and support their fellow-parents.

*Intake Worker. Address correspondence to David Lyttle, M.B., F.R.C.S.(C), Director Juvenile Prosthetic Clinic, Rehabilitation Centre for Children, 633 Wellington Crescent, Winnipeg, Manitoba R3M 0A8 Canada.