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Article 3. AAC Devices: Impact on Families

Perhaps more than any other type of assistive technology, AAC devices necessitate the active participation of family members–starting with assessment and continuing through the prescription, training and day-to-day use of the device. After all, it often is the family that has to charge the battery, set up the device, program it and deal with breakdowns. In addition, families must manage the plethora of professionals who are intensely involved at one moment and then all but disappear the next.

"The wrong kind of technology service may not only fail to enhance a family's functioning, but can actually be a drain on family energy."²² Investigators have documented that when assistive technology is involved, some families choose against it in favor of what they perceive as a reasonable quality of life for their family. In some cases, AAC devices may be disruptive to family functioning, which can have an adverse affect on the individual using the device. Stressors include: 1) adding to a family's routines, 2) restricting family activities, 3) money issues, 4) interpersonal clashes and 5) other lifestyle changes.

A recent survey conducted in the U.S. explores the degree of family participation in AAC assessment and prescriptive practices with children from birth to 3 years of age. Researchers sent surveys to 50 states funded under P.L. 100-407 (the Tech Act). Results, based on a response rate of 80% (40 surveys), include the following observations: Most states now provide a range of AAC services–purchasing or leasing AAC devices (67%), customizing and adapting devices (78%), training for children (81%), for families (81%), and for others (68%) and coordinating services (80%). Only 48% repaired devices.

• Although many states consider family issues (which are mandated for this age group), they do so to a lesser extent than they consider more traditional factors such as the child, technology and service system characteristics.

• All (98%) consider family preferences in the assessment process.

• Many (67%) said families play a central role in the evaluation process. Some (26%) said they did not know if families participated prior to developing Individualized Family Service Plans (IFSP).

• Family involvement varied markedly across facilities.

Sixty-eight percent (68%) said devices changed the family routine.

• Family issues less often considered were: additional child care responsibilities, restrictions in family activities, modifications in the home, ability of the family to cope with stress, the extent to which family needs were balanced with existing resources, financial resources, and availability of personnel and community resources for training and maintenance.

• Only 58% said they were able to measure a family's satisfaction with devices and services.

• Family members are frequently overwhelmed by technology.

The authors concluded that AAC devices impact families in three primary ways: 1) They increase a family's time commitments and stress, 2) they change family routines and 3) they alter family interaction patterns. ²²

Another recently published study addresses continuity in the development of AAC systems (devices, symbols, accessing techniques) with school-aged children. Although family issues were not directly mentioned in the study, the family's role in delivering continuous services can not be overlooked. Smith-Lewis²³ found professionals in AAC do not always make continuous decisions regarding changing from one device or symbol set/system to another. A discontinuous evolution in the development of AAC systems may be linked to staff changes. To maintain continuity, family involvement may be key. Smith-Lewis also recommended matching students with knowledgeable staff who remain consistently involved over time and in-service training for those working with students who use AAC systems.

Surely we need to consider family factors very carefully before prescribing AAC devices. We need ways of evaluating their impact on family systems and individual family members following the introduction of technology, and at regular periods thereafter.

This article appears in ACN Volume 7, # 6.

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