Date of Award

8-2004

Degree Name

Doctor of Philosophy

Department

Public Affairs and Administration

First Advisor

Dr. Peter Kobrak

Second Advisor

Dr. William Wiener

Third Advisor

Dr. David Hartmann

Abstract

There is a national agenda for advancing self-determination for persons with disabilities. Broadly defined, self-determination means having control over ones own life. The purpose of this research was to gain a better understanding of self-determination and its effect on the quality of life of persons with cognitive disabilities. A qualitative, phenomenological approach was selected. Ten individuals from a community mental health system in southwest Michigan participated in the study. Participants had a developmental disability and were dependent on others for their care. The research combined qualitative interviews with behavioral observations and proxy interviewing, and included the audiotaping of those interviews. Data was processed using Ethnograph v5.0. Significant statements and observations were analyzed and reduced to common themes. A composite description of self-determination and its effect on quality of life was formulated.

While the participants in the study do not represent the perspectives of all persons with cognitive disabilities, they do contribute to our understanding of their experiences. This study demonstrated that persons with cognitive disabilities are good informants, both willing and able to share meaningful perspectives about important issues which impact their lives. The conclusions were that self-determination is experienced more often in the minor everyday decisions about the “when, what, where, and with whom” element of everyday life. The findings also provide insight on the relationship between one dimension of quality of life, emotional well-being, and self-determination. From the perspective of the individual with a cognitive disability, the absence of self-determination changed his or her perceived quality of life. A lack of self-determination was experienced on an emotional level, with fear, anxiety and stress over choices others had made. In general, the ten participants all reported a good quality of life, and a disabling condition did not appear to influence that perception of overall well-being. The results of this study show evidence of the disability paradox, the fact that a person's perceptions are often discordant with one's objective status.

Access Setting

Dissertation-Open Access

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