JSET ejournal
Family-Centered Decision Making in Assistive Technology
Phil Parette
Southeast Missouri State University
Alan VanBiervliet
University of Arkansas for Medical Sciences
Jack J. Hourcade
Boise State University
This article is the first in a series of special invited manuscripts from leaders in the field of special education technology. JSET has invited experienced researchers and practitioners to share their current projects and speculate on important trends for the future. This forum will provide a distinct opportunity for sharing ideas and generating new directions for research and practice in special education technology.
Family-Centered Decision Making in Assistive
Technology
During the past two decades, the role of assistive technology
(AT) in providing appropriate educational programs for children
with disabilities has grown tremendously. The Technology-Related
Assistance for Individuals with Disabilities Act of 1988, P.
L. 100-407, established a national funding mechanism for comprehensive
state systems of AT service delivery. That legislation also provided
the impetus for the subsequent federal mandate under IDEA (P.
L. 101-475, The Individuals with Disabilities Education Act of
1990) that AT must be considered when developing individualized
education programs (IEP) for children with disabilities. Subsequent
reauthorization of IDEA (P. L. 102-119, The Individuals with
Disabilities Education Act Amendments of 1991) specifically identified
AT as a service to be provided in the IEP as appropriate.
Importantly, each of these federal mandates has emphasized enhanced
family participation in special education decision-making processes.
Generally regarded as "best practice" for some time,
the inclusion of families in all processes affecting AT service
delivery to children with disabilities is now legally mandated
(Inge & Shepherd, 1995; Judge & Parette, 1998).
A frequently used approach to include families in decision making
is to invite and facilitate dynamic family participation on IEP
and Individual Family Service Plan (IFSP) teams. On the best
of these teams, professionals and family members participate
as equal partners, working collaboratively in pursuit of a common
interest (Dunst & Paget, 1991). The active participation
of family members may be especially important when AT devices
are being considered by decision-making teams (Ainsa, Murphy,
Thouvenelle, & Wright, 1994; Beaver & Mann, 1994; Parette
& Brotherson, 1996; Parette, Hourcade, & VanBiervliet,
1993). Given that such typical AT-related goals for children
with disabilities as greater independence or enhanced communication
skills have significant implications for home as well as school,
significant involvement of the family in these service decisions
becomes even more critical.
Family Issues and AT Decision Making
Inclusion of family members during team AT decision making provides
the comprehensive perspective necessary for selecting the most
appropriate AT devices for children with disabilities. Important
factors typically considered by the team in this process include
such traditional considerations as child characteristics, AT
device features, and service system concerns, as well as such
less traditional issues as family concerns and cultural factors
(Parette & Hourcade, 1997). A number of previously developed
AT program development guides for professionals and family members
discuss many of these issues (Parette & VanBiervliet, 1990,
1991a-c). More recently, CD-ROM training materials have been
designed to provide in-depth information regarding the relative
importance of a range of family issues during AT decision-making
processes (VanBiervliet & Parette, 1999).
While some family issues receive significant attention as teams
make decisions about AT, other equally important family issues
may not be adequately addressed. For example, Parette and Hourcade
(1997) examined state practices related to augmentative and alternative
communication (AAC) decision making. They found that, while family
preferences for particular AT often are considered at least to
some extent, many other important family issues (e.g., increase
in parental responsibility for implementing device; increase
in stress; financial resources required) frequently were not
considered by teams. Given the increasing emphasis on family-centered
service delivery in special education, the potential disregard
of significant family issues is a matter of significant concern
(Darling & Baxter, 1996).
Importance of family values.
Effective team planning for AT requires that the unique qualities
of individual family values be incorporated into any decisions
(Simpson, 1996). Incorporating family values helps professionals
(a) build more collaborative relationships, (b) understand the
extent of participation desired by the family, and (c) separate
out cultural differences from personal preferences or lack of
understanding (Lynch & Hanson, 1992b). Program dissonance
occurs when values of professionals differ from values held by
families and those differences are not successfully addressed,
thus negatively impacting the potential outcomes of any program
decisions.
