Falling Through the Cracks: Caregivers' Experiences With Choice of Providers

Purpose: We sought to understand the experiences of family members and direct care staff of adults with intellectual and developmental disabilities in a private pay day program focused on socialization and recreational skills. Method: Two focus groups were held with parents/caregivers and one with s...

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Bibliographic Details
Published in:Rehabilitation research, policy, and education policy, and education, 2016, Vol.30 (4), p.338-352
Main Authors: Neely-Barnes, Susan, Zanskas, Stephen, Lustig, Daniel, Duerr, Rachel, Zhao, Minna
Format: Article
Language:English
Subjects:
Adults
Caregivers
Developmental Disabilities
Focus Groups
Health Care Administration and Management
Health Sciences
Intellectual Disability
Medicine
Parent Caregiver Relationship
Physical Medicine and Rehabilitation
Public Health
Socialization
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Summary:Purpose: We sought to understand the experiences of family members and direct care staff of adults with intellectual and developmental disabilities in a private pay day program focused on socialization and recreational skills. Method: Two focus groups were held with parents/caregivers and one with staff. Using an interpretive method, two investigators independently coded the transcripts and arrived at themes. Results: Themes identified included transition, lack of information, lack of resources, caregiver needs, independence, employment, and education. Conclusion: Families and staff experienced frustration with service fragmentation/access to alternative programming. Families and staff wanted opportunities for employment and independent living programming but lacked resources. Implications for practice and policy are discussed.
ISSN:2168-6653
2168-6661
DOI:10.1891/2168-6653.30.4.338