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Article 4. Being Family Centered in AAC

Care giving families provide a precious national resource. As such, they require nurturing and protecting for purposes of conservation."²⁴ Historically, and particularly since the advent of deinstitutionalization, families have been a primary source of care giving for most individuals with severe disabilities. Yet, efforts to support families are relatively new in most areas of the world and often represent only a small proportion of the public resources spent on individuals with severe disabilities. Family-centered approaches emphasize^{20, 25:}

• A focus on the capacity, not the dysfunction, of a family.

• a culturally sensitive and respectful way of understanding the worldview of the individual with a disability and his/her supporters.
• services that are provided within the context of the values and priorities of the family.

Although the autonomy of AAC users must be respected, the characteristics of a family-centered approach are well-suited to AAC delivery systems. Such practices are encouraged with young children and considered desirable for people who are aging or ill (particularly those nearing death). However, they are not prevalent in educational or medical systems, which are oriented to the individual–children, after all, need to progress in school, and patients need to get better.

Everyone agrees that positive family involvement is desirable, indeed necessary, in the area of AAC. Even so, few resources are available to support family involvement. Professionals in AAC receive minimal, if any, training in family systems theory, conflict resolution, role definition, family-centered planning and team process techniques. Even fewer parents and other family members are offered such training. This remains true despite research findings that: ^{14, 20}

• role preparation is significantly correlated with outcome.
• training improves parents' participation in decision making and
• a statistical relationship exists between providers' perceptions of clear goals and the degree of goal attainment with mentally handicapped children.

Programs receiving government funding should find ways to broaden the use of family-centered approaches in the delivery of AAC services across settings.

This article appears in ACN Volume 7, # 6.

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