Life In a Family Guardianship Arrangement as Perceived by People with Disabilities and Their Guardians: Interrelationship in Decision-Making, “Personhood” and Self-Determination

Catalog # 890-186-2019| Supervised by: Prof. Arie Rimmerman

This work was supported by a grant from Shalem Fund

This study explores the perceptions of individuals with disabilities who have been appointed a family member as their guardian, as well as the guardians themselves. The study focuses on four areas: guardianship, decision making, “personhood” and “self-determination”. Through qualitative methodology, thirteen pairs of guardians and family members with disabilities were interviewed, revealing significant insights. Most guardians consider the appointment as a given fact and a natural extension of their kinship role. Decision-making involves negotiation, with the guardian’s authority sometimes being influenced by the individual. The guardians’ perception of “personhood” is complex, balancing uniqueness and family relationships, but often viewing the individual as a “child.” Self-determination varies, with some experiencing support while others face obstacles.

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Keywords: uardianship, parents of adults with disabilities, self-determination, personhood.



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