Grant to expand research that supports Kansans with disabilities and their families

LAWRENCE — Building on more than 50 years of federal funding, a University of Kansas research center focused on intellectual and developmental disabilities has received a five-year, $2.9 million grant to expand its work that supports Kansans with disabilities and their families.

The grant from the Administration for Community Living, Office of Intellectual and Developmental Disability funds the core activities of the Kansas University Center on Developmental Disabilities, or KUCDD, based at the KU Life Span Institute. The center is part of a network of 67 such university centers.

The center’s core activities — research, community service, training and education, and information dissemination — directly benefit Kansans, said Karrie Shogren, a Ross and Marianna Beach Professor of Special Education and director of KUCDD.

“This grant will provide continued support for KUCDD’s efforts directly engaging people with disabilities and their families in research and training, in building inclusive communities and in disseminating information that has an impact in Kansas and across the nation and world,” she said. “This recognizes the power that there is in the community to partner to develop practices that work to change systems and promote self-determination for people with disabilities.”

To build on its history of improving outcomes for Kansans with intellectual and developmental disabilities, or IDD, and identify the most pressing needs in the disability community, KUCDD recently supported statewide listening sessions to capture the voices of people with disabilities and family members. Researchers focused on Kansans’ experiences with services, examined the impact of the COVID-19 pandemic on the lives of people with IDD and their families, and collaborated with schools and community partners to identify new and emerging education and transition needs. They also conducted feedback sessions with members of the center's Consumer Advisory Council (CAC), research partners and Kansas developmental disability network organizations. The work identified:

• the pressing needs of transition-age youth in Kansas, including concerns about moving from school to competitive employment, postsecondary education and community participation;
• an increase in behavioral and emotional support needs across the life course due to social isolation and decreased supports during the pandemic;
• the synergy and potential growth of the priorities pursued by KUCDD, statewide community and governmental partners, and additional university partners creating new potential partnerships, research directions and community services.

The new KUCDD grant will continue to provide infrastructure support for new projects to address these priorities and allow KUCDD to expand its focus on inclusive research, or research that is co-developed, co-implemented and co-disseminated by people with lDD. For example, in FY2022, the center received almost $6 million in additional federal and state funding supporting these priorities and will continue to grow this support in coming years.  

“We seek to do good science that’s rooted in values,” Shogren said. “We want to be doing research that makes a real impact and is truly driven by this value of self-determination — that people with lived experience have the right to be centered in all phases of the research process, telling us what matters to them.”

KU Life Span Institute Director John Colombo said the center’s continued federal support means directly improving the lives of Kansans.

“Since 1969, KUCDD faculty and staff have led groundbreaking research in family supports, inclusive education, self-determination and positive behavior supports,” Colombo said. “This foundational work is a part of our commitment to impact policy, practice and research while promoting opportunities for empowerment, self-determination and inclusive community participation for people with developmental disabilities and their families.”

Photo: A KU student works in a greenhouse as part of Transition to Postsecondary Education, an inclusive postsecondary education program for KU students with intellectual disabilities. Credit: Drew Rosdahl