Guardianship Experiences: People With Intellectual and Developmental Disabilities and Their Caregivers

Approximately 1.3 million Americans are currently under guardianships or conservatorships of some form, meaning 1.3 million family members, friends, and state-appointed guardians also must navigate being guardians. Therefore, the legal processes and perspectives of guardians and individuals under guardianship are valuable in research and policy development. As guardianship data is limited, it is necessary to better understand the experiences and perspectives of both guardians and those under guardianship to better advocate for guardianship reform. Five focus groups examined the perspectives of fifteen caregivers and thirteen individuals with intellectual and developmental disabilities on how they accessed information on guardianship, and on their internal experiences with guardianship. Findings on information access included the perspectives on “Roles of a Guardian,” “Guardianship and Supported Decision-Making Processes,” and “Guardianship as a System.” Findings on the internal experiences with guardianship included perspectives on “Benefits of Guardianship,” “Barriers of Guardianship,” and “Emotional Outcomes.” A review of guardianship history and alternatives, both from the federal and state perspectives, gave context and framing to the reported experiences and perspectives.

Author dc:creator

• Hope Sparks (23291347)

• Disability Studies

Statement dc:rights

• In Copyright

DOI dc:identifier

https://doi.org/10.25417/uic.31451098.v1

OAI identifier oai:identifier

oai:figshare.com:article/31451098