Date of Award:

8-2017

Document Type:

Dissertation

Degree Name:

Doctor of Philosophy (PhD)

Department:

Special Education and Rehabilitation

Advisor/Chair:

Keith Christensen

Abstract

Adult siblings of people with intellectual and developmental disabilities (IDD) are often on the front lines of supporting their brothers and sisters with IDD through caregiving and guardianship roles after their parents pass away. However, these siblings are often uninformed or under informed about ways that they can support their brothers and sisters. This study had the following three purposes: to determine what adult siblings of adults with IDD know about guardianship and its alternatives; to explore how adult siblings view guardianship and its alternatives; and to explore what adult siblings think about their role of being a guardian or supported decision maker for their brother/sister with IDD. Ten adult siblings who had brothers and sisters with IDD were interviewed; their interviews were analyzed using a combination of grounded theory and directed analysis. This study found that siblings had a limited knowledge of guardianship and its alternatives, viewed guardianship as necessary, and desired to be involved in future planning and decision making supports with their brother or sister in adulthood. These findings have several implications for future research, as well as for schools and disability service agencies. For example, siblings’ limited knowledge about guardianship and its alternatives highlights the need for schools, disability agencies, and other disability organizations to better inform families about the full range of options available to support people with IDD in making decisions. Likewise, as the sibling participants were concerned about their brother and sister’s decision-making abilities, there is a need for better training of people with IDD to be able to make and express their choices in a variety of situations. Finally, as this study had a small sample size and the participants’ were all White, future research with more diverse and larger sample sizes is needed.

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