Caregiving of aging adults and adults with disabilities: Theoretical foundations and policy alternatives

This study of the family impact of the implementation of long-term care services to aging adults and adults with disabilities incorporated a case study design. The case study provided a rich description of the perceptions of stakeholders on the family impact in the state of Delaware. The stakeholders included agency administrators, individuals with disabilities, and family members of individuals. Data analysis included coding of the transcripts from stakeholder interviews, review of e-materials, and published reports. Symbolic interaction, social exchange, stress, and ecological theories guided the study and were useful in framing the results. The results revealed a process for accessing services that is both sequential and recursive. Results showed that individuals and families who are educated on the terms in the field and have a contact or advocate in the field are better able to manage the process and often receive more services. In addition, while many of the services are driven by the diagnosis, families may be better served by an assessment of need that considers functional limitations instead of diagnosis. Respondents indicated that a lack of transparency in the determination of eligibility and services creates barrier for families. Additional barriers include a lack of flexibility in the choice of services, difficulties with risk management, a continued preference in the policies and processes toward institutional settings, and a lack of coordination between departments. The determination of services utilizes a person-centered approach to facilitate independent living for individuals with disabilities. An important finding was that the terms independence, family, and risk have different definitions for individuals, families, and agency employees. Balancing independence and family support can be achieved by incorporating an assessment of family need in addition to individual assessments. Definitions of family need to be expanded to include diverse family forms and fictive kin as possible sources of caregiving and support. Implications for practice and policy development are discussed.