Date of this Version
Family Assessment, ed. Jane Close Conoley & Elaine Buterick Werth (Lincoln, NE: Buros Institute of Mental Measurements, University of Nebraska-Lincoln, 1995).
Mortality in mothers and infants has been reduced as medical science has advanced. The ability to extend the lives of individuals born with disabilities, or who become injured later in life, has steadily increased with advances in science. As a result, the existing population of individuals with special needs has grown, thereby increasing the numbers of families affected by a disability. In the past, individuals with severe disabilities may have been institutionalized. Now, although institutions still exist, greater numbers of individuals with disabilities are likely to be cared for in the home. What effect does this have on families and their functioning? How can families be helped to access their strengths? Accurate family assessments are a crucial component in the task of answering these and other critical questions regarding individuals with disabilities and their families.
Assessing the families of individuals with disabilities is a complex, multifaceted task. Not only must the family be assessed, a formidable task in itself, but the impact of the disability on the family, as well as on the individual with the disability, must also be factored into the assessment process. Depending on the type of disability, successful assessment may require creative approaches. Information from all family members may not be available due to the nature of the disability. For example, people with certain disabilities may be unable to describe their perceptions of their place in the family or their sense of family cohesiveness. As each family member has his or her own view of the family system, it is important to have as many members of the family as possible complete family assessment measures (Olson, McCubbin et al., 1992). Family assessment that is unable to include the perceptions of the individual with the disability will necessarily be limited in its comprehensiveness and usefulness.
The purpose of this chapter is to provide information regarding the assessment of families of individuals with disabilities. In addition to the background information provided initially, a brief review of the literature is included. Methods of assessment and specific standardized assessment devices are then described and reviewed for their usefulness in assessing families of individuals with disabilities. Finally, critical issues to consider in assessing these special families are discussed.
The vast majority of published research has as its focus the families of children with disabilities, particularly congenital disabilities (Yura, 1987; Benson & Gross, 1989; Lobato, Faust, & Spirito, 1989; Konstantareas, 1991). A much smaller amount of information is available regarding the families of adult individuals with disabilities acquired congenitally or through accident or injury later in life (Fohs, 1991; Jackson & Haverkamp, 1991).
Research surrounding the families of children with disabilities has perhaps been spurred by the involvement of government-first in the rights of children and later in the rights of children with disabilities. Not only do laws exist that provide services for school-aged individuals with disabilities, but Public Law 99-457 extends services to birth for children with disabilities. This law also serves to underline the importance of involving the family of the individual with a disability in both assessment and provision of services (Fewell, 1991) and reflects "the assumption that family functioning and child development are inextricably intertwined" (Frey, Greenberg, & Fewell, 1989, p. 240).
Government may again provide the impetus to study individuals with disabilities and their families. The recent enactment of the Americans with Disabilities Act (ADA) has drawn attention to the rights of all individuals with disabilities, particularly adults, and may spur interest in investigating the families of these individuals.
Studies regarding families containing individuals with disabilities have often been conducted in a somewhat non-cohesive fashion. Researchers have studied the individual with the disability in relationship to various individuals and systems. These include studying the individual with the disability in relationship to: the family (Newman, 1991; Seligman & Darling, 1989; Roberts, 1984); the parents (Seligman & Darling, 1989); the mother (Dunst, Trivette, & Cross, 1986; Roberts, 1986; Vadasy & Fewell, 1986); the father (Meyer, 1986; Lamb & Meyer, 1991); the siblings (Bischoff & Tingstrom, 1991; Crnic & Leconte, 1986; Seligman & Darling, 1989; Seligman, 1991); singleparent families (Vadasy, 1986; Wikler, Haack, & Intagliata, 1984;); grandparents (Seligman & Darling, 1989; Seligman, 1991; Sonnek, 1986); and support networks and institutions (Darling, 1991; Stagg & Catron, 1986). Studies investigating cultural differences in response to family members with disabilities have also been conducted (Florian, 1989). In general, these studies show the presence of an individual with a disability has a decided impact that may be both positive and/ or negative (Benson & Gross, 1989; Yura, 1987). This impact is felt in a variety of family and community areas including individual relationships, quality of life, and economics.
Type of disability is another area of focus seen in the literature. Researchers have looked at individuals with specific disabilities in relationship to the above listed individuals and systems, whereas others have studied the isolated individual effects of the disability. Disabling conditions researched include: juvenile rheumatoid arthritis (Varni, Wilcox, & Hanson, 1988); cystic fibrosis (Brinthaupt, 1991); spina-bifida (Spaulding & Morgan, 1986); cerebral palsy (McCubbin, 1989); head/traumatic brain injury (Jackson & Haverkamp, 1991); Down's syndrome (Carr, 1988; Damrosch & Perry, 1989; Ryde-Brandt, 1991); mental retardation (Donovan, 1988; Gowen, Johnson-Martin, Goldman, & Appelbaum, 1989; Abbott & Meredith, 1986); developmental disabilities (Hampson, Beavers, & Hulgus, 1990; Thorin & Irvin, 1992; Trute & Hauch, 1988; Rimmerman & Portowicz, 1987); learning disabilities (Konstantareas, 1991; Konstantareas & Homatidis, 1989; Michaels & Lewandowski, 1990; Morrison & Zetlin, 1988, 1992); behavior disorders (Parker, Hill, & Goodnow, 1989); mental illness (Chafetz & Barnes, 1989; Medvene & Krauss, 1989); autism (Donovan, 1988; Konstantareas, 1991); visual impairments (Ammerman, VanHasselt, & Hersen, 1991; VanHasselt, Hersen, Moor, & Simon, 1986); hearing impairments (Strom, Daniels, & Jones, 1988; Warren & Hasenstab, 1986); and orthopedic impairments (Varni & Setoguchi, 1993). Comparisons of families containing children with congenital disabilities versus families containing children with acquired disabilities are also available (Bragg, Brown, & Berninger, 1992).
Ongoing research in the area of families containing individuals with disabilities is critical, as is research regarding the impact on a family when a previously healthy adult is disabled through illness or accident. Not only the families, but the individual who has become disabled, may need assistance in coping in ways that may be very different from those of families into which a disabled member is born. Family assessment instruments designed to measure the needs, strengths, and weaknesses of families containing individuals with disabilities will be critical to increased understanding and effective service provision.