Alternatives to Guardianship Focus of KU Research, Senate Committee Hearing

People frequently assume guardianship is the best or only option for adults with disabilities who need supports with decision making.  However, the highly restrictive nature of legal guardianship arrangements is often not well understood, and people are often unaware of how difficult and expensive guardianship arrangements can be to change.

Karrie A. Shogren, Ross and Marianna Beach Distinguished Professor of Special Education and director of the Kansas University Center on Developmental Disabilities within the Life Span Institute, spoke to the Senate Special Committee on Aging in Washington, D.C., at a hearing on guardianship and its alternatives.  Sen. Robert P. Casey Jr. (D-Pa.) introduced legislation that would expand access to less restrictive alternatives to guardianship and enhance protections.
“There remains limited access to and understanding of less restrictive alternatives across education, disability, legal, health, and community systems,” Shogren said in her statement before the committee. “This limits the right of people with disabilities and older adults to be involved in decisions about their lives.” 

As noted in an article in the Washington Post that quoted Shogren, guardianship can place control over a person’s individual decisions about relationships and marriage, reproductive choices, personal finances, education, employment, voting and civic life, travel and more. The arrangement limits a person’s right to make choices about their own life, harming their quality of life and self-determination, Shogren said.  

“Growing information is emerging on formal and informal supported decision-making arrangements, suggesting the feasibility of this approach as well as positive impacts on the engagement of people with disabilities and older adults in decision-making and advocating for their needs, as well as reductions in risk for abuse because of having a team of supporters,” Shogren stated. 

To move away from guardianship as a “default” in favor of less restrictive arrangements—such as supported decision-making care—additional training, education, and a system for data collection to follow the impact of arrangements is needed, Shogren told the committee. 

“We can create decision-making supports that do not result in the removal of decision-making rights,” Shogren said. 

The Kansas University Center on Developmental Disabilities is home to significant research on self-determination. Information about self-determination and the research that supports is available through the center’s self-determination website