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Article 2. Collaboration and Continuity

Families and professionals strive to develop partnerships and reach consensus on goals and objectives, but this does not always occur.¹⁴ For example, studies have demonstrated that parents of children with disabilities often feel excluded from intervention decisions. Other studies comparing parent and professional values and priorities found significant differences in what each group regarded as valued services and outcomes. Three major frustrations parents expressed were: too many professionals, segmentation of a child based on disability labels, and fragmented service coordination.

AAC is an area of practice that strives to enable individuals to access language and communicate in ways that allow them to participate in their families, schools, workplaces and communities. There is a widespread belief in the field of AAC that collaborative relationships yield better results. Without collaboration, intervention is at risk for being exactly as the dictionary defines it–"interference of one person in the affairs of another."⁴ Clearly this is not the intent of the field of AAC.

If the term intervention is an inaccurate description of what we do, then what is a better term?

Checklist for practitioners

The following Checklist for Practitioners was compiled from the literature, presentations and interviews.^16-20 While far from comprehensive, it provides some basic strategies for improving collaboration, observations and interviews. If you answer "yes" to every question, you're doing better than I. Note: Why is there always so much more to learn?

a. The basics

1.Do you recognize your personal biases about ethnic groups, sexual orientations, family values and so on? Are you aware that your attitudes can be barriers that affect interactions with families?

2.Do you always keep in mind that the AAC user's needs are interdependent with those of other family members?

3.Do you treat each family as unique?

4.Do you always respect parents' desires to be trusted as authorities on their children?

5.Do you always listen carefully to the interpretations, priorities, expectations and preferences of parents, spouses and other family members?

6.Do you recognize and respect that sometimes issues of survival take precedence over educational/clinical concerns?

7.Do you appreciate a family's need for stability and continuity in AAC services? Do you provide this?

8.Do you appreciate that a family is deciding whether (or not) to trust you?

9.Every family has a schedule. Do you work around that schedule?

10.When you go into a home, do you take the clinic with you? Or, do you leave it behind and use materials and situations that occur naturally? [Note: communication isn't a tutorial. It's a part of living.]

11.Do you always include family members in discussions about changes that will have an impact on the family?

12. Are you always honest with the family? When you don't know, do you admit it?

b. Do you observe?

1.What roles family members play? Information provider, active participant, advocate, communication partner and planner.

2.In the home. Who greets you? Who participates? Who lives there? Who are the primary and secondary caregivers? Where are you asked to sit? Where does everyone else sit? Are AAC users expected to participate and communicate? Do they?

3.In the clinic. Who comes to the sessions? Where do family members sit? Who sits next to the AAC user? Who answers your questions?

4.What questions do family members ask?

c. Do you ask?

1.Where the family prefers to meet with you?

2.How far in the future they wish to plan?

3.What the family's long and short-term expectations are?

4.Who the main family members are? What role does each play? Are all influential family members participating?

5.Who the AAC user wants to include?

6.How each participant would describe the family member who uses AAC 5 years from now?

7.How each family member would describe his/her role with the AAC user 5 years from now?

d. Using language

1.Are you aware of differences in communication styles? Do you have ways of determining if a family prefers a more formal or informal approach?

2.Do you avoid using technical jargon?

3.Do you hire competent bilingual and bicultural interpreters when they are needed?

4.Do you always sample the language use of siblings and peers?

5.Do you ask families to help you select symbols to represent vocabulary on displays/devices?

6.Do you include families in vocabulary inventories and in the selection of AAC devices?

Our challenge

In 1985 Cohen²¹ described the need in AAC for a lifelong management approach. While professionals come and go, only the AAC user and his/her supporters (often the family) are involved for the duration. Thus, while professionals have an important role to play in assisting families, it may be their ability to strengthen informal social networks that is most important.^{5, 20}

This article appears in ACN Volume 7, # 6.

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