JSET ejournal
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Family-Centered Decision-Making in Assistive Technology
Shift in family roles
The inclusion of AT in a home represents a significant change
for many families. Providing AT for students with disabilities
requires new role behaviors on the part of the children, and
new interaction patterns between those children and other family
members (Giacquinta & Lane, 1990). Criteria that help determine
whether such a change is positive or negative for a family include:
(a) family member receptiveness to the AT device, (b) family
willingness/ability to implement the AT, (c) availability of
support resources, and (d) compatibility of the overall family
system with the AT (Gross, Giacquinta, & Bernstein, 1971).
Rogers (1983) additionally suggested that another important factor
is the family's perceived need for AT. Not all families will
be receptive to provision of AT, particularly if changes in routines
and such additional stressors as repeated training sessions are
introduced (Hourcade, Parette, & Huer, 1997).
The potential for abandonment
Failure to consider family factors and to involve families in
meaningful ways during AT planning may result in the abandonment
of devices that are prescribed by teams. AT abandonment refers
to the observed phenomenon wherein the AT is simply discarded
and not used (e.g., Batavia, Dillard, & Phillips, n.d.; Batavia
& Hammer, 1990; Parette & Angelo, 1996; Phillips, n.d.).
Abandonment of any assistive technology device has far-reaching
implications, including: (a) exacerbation of the effects of disability
experienced by the child (Brody & Ruff, 1986), (b) excessive
personal and financial costs for families (Luborsky, 1993), and
(c) inefficient (if not wasteful) use of finite service system
resources (Bradley, Parette, & VanBiervliet, 1995).
Importance of information, training and supports
Integral to family acceptance of AT is the provision of appropriate
information, training, and related supports to ensure the success
of the device in the home setting (Parette, 1997). Families repeatedly
report that they have needs for AT information in such diverse
areas as range of devices available, features of devices, maintenance
requirements, cost, funding, teaming issues, and training required
(Angelo, Kokoska, & Jones, 1996; Behrmann, 1995; Carey &
Sale, 1994; Derer, Polsgrove, & Reith, 1996; Parette &
Hourcade, in press; Wehmeyer, 1999). A truly family-centered
AT assessment process should result in the identification of
those AT devices and services most needed by the child and his
or her family (Parette & Brotherson, 1996). The most effective
determination of child and family needs results when professionals
conduct culturally sensitive interviews and other information-gathering
approaches with families, and provide families with comprehensive
information about supports and services. The end product of an
effective assessment process is a unique set of recommendations
based on the family priorities for AT.
Of particular importance to many families is the need for information
and training that is user-friendly and accessible (Parette, Brotherson,
Hoge, & Hostetler, 1996). In analyzing family preferences
for training related to AAC devices, Parette et al. (1996) reported
that families prefer to have information and training provided
using support groups. They also noted that families want information
that is easy-to-understand, and delivered in flexible, family-friendly
formats.
For example, some professionals utilize a lecture/presenter/demonstrator
approach in which they orally transmit information to participants
who are captive audiences for large blocks of time. Large quantities
of printed materials may be presented to participants, who are
then expected to leave the presentation site, read the information,
make inferences about content related to their needs, and implement
the necessary strategies with their children. The assumption
is that simply receiving information about or being observers
of demonstrations of AT will then translate into parents and
other family members then being effective teachers or trainer
for children with disabilities. Such an assumption may be inaccurate,
as family members generally are not trained to be teachers, nor
do they always wish to take on such a role. Nevertheless, all
too often current approaches to delivering information and training
are based upon this implicit assumption.
Families prefer to receive information and training from family
members who have already had experiences with a particular type
of AT. They may also want to see families/children using an AT
device being considered by the team. They also prefer discrete
information relevant to their needs, information that is easy
to read or implement. Finally, they often request ongoing supports
(e.g., demonstrations, technical assistance, an empathetic listener)
while they are attempting to implement the information/training
received (Parette et al., 1996).
