RESEARCH INFORMATION ON INDEPENDENT LIVING
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Volume 1, Issue 1

Self-Determination Assistance

Ask someone with a disability or that person’s family member about self-determination and that individual may say that self-determination means "having one's voice be heard," "getting a life,” "figuring out what you want and going for it," or "having a say over your life.”

Self-determination is an evolving concept closely linked to the principles of freedom, autonomy, and responsibility. In the early 1940s, psychologists defined a person with self-determination as one who determines his or her own fate without being forced into choices or actions. Later, many viewed self-determination as a behavior, the ability to make things happen. In this definition, a person may direct functions, but not necessarily perform specific functions.

As to what makes up self-determination, one study reported that a self-determined person has identified needs, interests, and abilities. The individual sets goals, makes choice, plans, takes action to complete goals, evaluates results, and adjusts plans as needed. Several studies find that skills that accompany self-determination include decision making, problem solving, personal advocacy, and communication.

Self-determination goes hand in hand with communication skills, because communication allows people to signify choices, seek information, and form relationships. To increase self-determination, many people with severe disabilities depend on another's interpretation and willingness to listen to grow.

The younger a person with disabilities learns self-determination, the better. Michael Wehmeyer, a noted researcher in developmental disabilities, has said that children need opportunities to develop self-determination and choice making should not be left for chance.

For example, an elementary student is not developmentally ready to make independent decisions. So, activities that revolve around understanding consequences and identifying problems would be appropriate self-determination lessons.

By thinking of themselves as facilitators rather than directors, people who want to encourage self-determination need to establish trust in their relationship to get feedback and build in opportunities for daily choice making. If not already, people assisting others in self-determination need to view a person with disabilities as someone with abilities, rights, and as the one making decisions. The attitude of all should be "how can we make this happen?"

Assisting another in self-determination can be a complex struggle with choices that could be unwise, especially those concerning health, safety, community acceptance, and general welfare. At minimum, a support person should present information so that an individual can make informed decisions. Service providers shouldn’t suspend good judgment especially in issues of medication or criminal behavior. Nor should they take refuge in the dignity of risk, presumption of competence or virtue of choice when a person's safety is involved.

Developing self-determination may take a lifetime. Someone who has people in his or her life who are supportive and listen can prove invaluable in the quest for and attainment of self-determination.

Keep in mind that self-determination differs for each person, depending on the circumstances and disabilities, yet its main goal remains the same: to achieve individual well being.  —   Cindy Higgins, The Research and Training Center on Independent Living, The University of Kansas, 1000 Sunnyside Ave., Room 4089 Dole Center, Lawrence, KS 66045-7555, (785) 864-4095, E-mail: [email protected]. This project funded by National Institute on Disability Rehabilitation Research grant #H133A980048.

Information for this review came from the interactive Research Information on Independent Living (RIIL) database at www.GetRiil.org, which contains research summaries related to independent living with disabilities. A special effort has been made to include information that independent leaders in the field said they wanted, namely topics regarding accessible, affordable housing, effective advocacy for rural areas, effective transition from schools and nursing homes, accessible, affordable transportation, reaching underserved populations, policies that impede independent living, rural health care services, and Medicaid/Medicare regulations for durable equipment.

RIIL is a joint effort of the Research and Training Center on Independent Living at the University of Kansas and the Independent Living Research Utilization (ILRU) Program of TIRR.