LAWRENCE — University of Kansas researchers have secured three grants to advance understanding of how to support people with disabilities to participate in the most important decisions about their lives.
The grants will support research, in partnership with community stakeholders, on supported decision-making in Kansas, including the development of future training sessions for people with disabilities, family members and other supporters. Those sessions will then be developed for national use. Community partners on the grants include the Self-Advocate Coalition of Kansas, the Kansas Council on Developmental Disabilities, Families Together, the Disability Rights Center of Kansas and the Kansas Association for Area Agencies on Aging and Disabilities.
Researchers in the KU Center for Developmental Disabilities within the Life Span Institute have landed grants from the Administration for Community Living, Kansas Council on Developmental Disabilities and the WITH Foundation. The one-year grants total $189,000 and are underway.
“Supported decision-making is the idea that with the right supports, people with disabilities can and should participate in decisions about their lives,” said Evan Dean, associate director of the Center for Developmental Disabilities and principal investigator. “A lot more people with intellectual and developmental disabilities can make decisions with the right supports than is often assumed. We all use supports in making decisions in life, and that should be no different for people with disabilities, and this work is attempting to change these expectations.”
Supported decision-making has received international attention as not only a way for people with disabilities to advocate for themselves, but also as an alternative to legal guardianship arrangements. Under a legal, plenary guardianship arrangement, a court identifies a surrogate or guardian to make legal decisions for the person with an intellectual or developmental disability, based on the assumption that the person cannot meaningfully participate in critical decisions about their lives. Supported decision-making focuses on ensuring that people with disabilities maintain their right to make decisions for themselves while still accessing the supports they need.
The grants are funding community building and focus groups across Kansas with individuals with disabilities, family members, disability and aging advocates, teachers, legal professionals, medical personnel and other stakeholders. The goal is to better understand the supports that people with disabilities currently use, what challenges and opportunities exist, and how more people with disabilities can access those supports. Ultimately, researchers will develop online trainings based on their findings.
“These grant-funded projects are all about building infrastructure and knowledge of what’s happening on the ground, what else is needed to advance supported decision-making and building the supports to make that a reality,” said Karrie Shogren, professor of special education and director of the KU Center for Developmental Disabilities.
Supported decision-making is part of the larger movement to support people with disabilities to be self-determined, or to have a voice in all aspects of their lives. In addition to expanding rights, research has shown that when individuals with disabilities are active participants in determining their life course, improved educational and adult outcomes follow.
“One thing we know about decision-making is that it is a skill that can be developed with the right opportunities,” Dean said. “We need to start young, to help develop that capacity, so when an individual turns 18 we know they’ll have the skill and supports in place to engage in critical decisions.”
“Just as someone may turn to a spouse or family member for support in making decisions about finances or health care, so can individuals with disabilities with proper supports and decision-making skills,” Dean said. Supported decision-making is becoming more common across the nation, with several states passing laws supporting the practice as an alternative to guardianship.
KU researchers have been national leaders in helping individuals with disabilities reclaim rights and documenting benefits of self-determination. They have also written “Supported Decision-Making: Theory, Research, and Practice to Enhance Self-Determination and Quality of Life,” a book examining how supported decision-making can be applied in policy and practice.
“We’re focused on how, in practice, we can support options and opportunities for people with disabilities to maintain their rights and guide their own decisions leading to enhanced self-determination, while giving them the supports they need,” Shogren said.
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