Impact: Designing Lives of Their Own

The new issue of ICI’s Impact magazine explores how people with disabilities are experiencing self-determination today, including how they are using Supported Decision-Making (SDM) and other strategies to replace court-appointed guardianship, improve their education, and design lives that better reflect their values.

“The whole concept of self-determination has changed dramatically in the 30 years we’ve been researching it,” said Brian Abery, co-director of ICI’s Research and Training Center on HCBS Outcome Measurement. “Today it is much more complex and includes supporting people with the most significant disabilities to have the amount of control they want over their lives.”

Abery and Renáta Tichá, co-director of ICI’s Global Resource Center on Inclusive Education, served as guest editors for the issue, along with Jonathan Martinis, senior director for law and policy at the Burton Blatt Institute, Syracuse University; and Karrie Shogren, director of Kansas University’s Center on Developmental Disabilities. 

Articles include an update on state legislation and trends in using SDM to advance self-determination and other favorable outcomes in the lives of people with disabilities, visions of future directions from leaders in the disability community, and compelling personal stories of both self-determination and self-advocacy.

“I was told in high school that I could not continue my education because it was a waste of my time and my teachers’ time,” wrote Roqayah Ajaj, originally from Saudi Arabia and now a PhD student at University of Minnesota. Despite several obstacles, including the challenges associated with blindness, Ajaj is pursuing her dream of improving education for people with disabilities.

The issue’s cover story highlights Ryan King and his family, who fought a lengthy legal battle to end Ryan’s court-appointed guardianship, replacing it with SDM. 

Global perspectives on self-determination also are addressed.

“People with disabilities in countries such as Armenia, Russian Federation, Kazakhstan, Tanzania, and Kenya have begun to exercise self-determination in their lives,” writes Tichá, citing influences from the adoption of the 2006 United Nations Convention on the Rights of Persons with Disabilities.

In many areas of the world, however, self-determination and SDM in particular still are fledgling concepts, Tichá said.

“Given their different cultures and histories, you cannot expect self-determination to look the same in every country,” she said. “For many, the focus is still on the physical inclusion of people, and they haven’t moved to the point of advocacy. It’s not going to happen overnight.”