Family support, disability, and diversity: The perspectives of families

Date of Award

1997

Degree Type

Dissertation

Degree Name

Doctor of Philosophy (PhD)

Department

Teaching and Leadership

Advisor(s)

Steven Taylor

Keywords

Family support, disability, and diversity

Subject Categories

Family, Life Course, and Society | Special Education and Teaching

Abstract

Efforts in support for families of children with disabilities currently focus on the needs of the family as a unit. Nationwide, there is movement toward family-centered and family-determined support. The actual experience of families who receive support from the human service and education system, however, raises questions about the nature of that support.

In this study of 13 families--diverse in ethnic background, socioeconomic status, and parental make-up--in the states of New York and Michigan, I examine family perspectives on the nature of support. Data were collected through participant observation in family homes, at meetings, in schools, and at other social events that constitute their daily lives. I found that parents' interpretations of the meaning of disability in their family life often differed from those of professionals; that there was a discrepancy between what parents wanted and what they received in terms of support; that just as families were being judged by workers, workers were being judged by families based on the latters' standards; that families had their own ways of incorporating disability into their existing family structure. Based on my findings, I make recommendations related to creating more family-centered supports.

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