Family perspectives on out-of-home placement for their adult-aged family members with a disability: A preliminary study

Date of Award


Degree Type


Degree Name

Doctor of Philosophy (PhD)


Teaching and Leadership


Daniel D. Sage


Parents, Caregivers, Disability, Family, Out-of-home placement, Home placement

Subject Categories

Education | Special Education and Teaching


Over the last decade and a half, the nation has experienced a decline in the number of individuals residing in public institutions. An increased number of children with disabilities are living longer and remaining with their families in the community. In addition, previously institutionalized individuals are now returning to the community to live with their family members, or reside in alternative living arrangements.

The purpose of this study was to focus on parent caregivers and attempt to illustrate the circumstances associated with referral for out-of-home placement, and the identification of formal and informal supports which appear to be associated with families who maintain a member with a disability at home.

Since I was interested in the dynamic process of how a parent decides to keep his or her adult-aged son or daughter in the natural home or seeks out-of-home placement, it became obvious that a qualitative methodological approach would be the best way to access this information. Two groups of informants were recruited to participate in the study. The At-Home group was composed of ten caregivers who have maintained their adult-aged son or daughter at home, and wished to continue providing care at home. The Out-of-Home group was composed of ten caregivers who had approached a state agency requesting placement services for their son or daughter within the last two years. This group included families who were on waiting lists because a residential placement was not yet available.

Caregivers from both groups in the study identified support from friends and extended family members and membership in community and religious activities as critical components of coping with their individual caregiving situations. Transportation surfaced as an unmet service need, particularly for the out-of-home placement group. Residential options for the eventual placement of the individual with a disability became critical for aging caregivers. Caregiver age appeared to be the most significant factor that contributed to placement out of the natural home for the member with a disability.


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