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In 2021, the Center for Rehabilitation Outcomes Research (CROR) at Shirley Ryan AbilityLab received a five year, $4.4 million grant from the National Institute on Disability, Independent Living and Rehabilitation Research to launch the Rehabilitation Research and Training Center on Home and Community-based Services (RRTC on HCBS). The grant supports several major projects aimed at improving how well HCBS programs help people with disabilities live the lives they want.
Now in a no-cost extension, the RRTC on HCBS is completing analysis, finalizing products, publishing papers and preparing its final deliverables.
A defining feature of this RRTC has been its 25-person advisory structure, which is made up of two distinct but complementary groups: the Participants Council, made up of people with lived experience receiving HCBS, and the Adoption and Implementation Council, made up of HCBS providers, leaders and system level stakeholders. Together, these two councils play a vital role in shaping the RRTC’s research, tools and priorities. “This structure has made the work more grounded, more relevant, and more accountable to the people who are most affected,” says Jacqueline Kish, PhD, OTR/L, a CROR research scientist on the RRTC on HCBS. “It ensures that what we build is both meaningful to recipients and feasible for the organizations that deliver services.”
Most research centers or projects operate with just one advisory committee. But for the RRTC on HCBS, the team intentionally created two to capture two essential perspectives, Kish explains.
Across the life of the grant, both councils were deeply involved in three major initiatives: developing a new person centered HCBS outcome survey, identifying exemplary person centered HCBS providers, and creating microlessons that help direct service professionals use motivational interviewing to provide more person-centered care.
The Participants Council is chaired by Renee Manfredi, a nationally recognized self-advocate, consultant for Special Olympics International and Sargent Shriver Global Messenger alumna. The Participants Council ensures the research reflects the real priorities of people who use HCBS. Manfredi explains, “It’s really important for people like me to be involved. We are the ones who have to live with the decisions that agencies are making for us. Are these things person-centered or not? We can offer suggestions to make them better.”
The Participants Council was heavily involved in helping the researchers select concepts suggested by focus group participants for development into questions for a survey designed to help determine if HCBS are truly person-centered. The Participants Council also advised on the creation of an easy read version of the survey and weighed in on who should administer the survey.
The Adoption and Implementation Council is made up of leaders who work directly in HCBS systems, including provider agencies, state level organizations and policy influencers. The council includes Todd Costello, CEO, Community Living Alliance, a Wisconsin-based HCBS provider. Costello describes his role as bringing a practical, real world provider lens to the research. “We used our day-to-day experience to weigh in on the survey in terms of wording and training on delivering it, and how end users might receive the materials,” he says. “Everyone gave feedback, and you could really see the products evolve. The final survey is really something we can be proud of.”
Members of this council helped test early versions of the survey, reviewed training scenarios, suggested agencies with strong person-centered practices for case studies, recruited participants for survey testing and examined how the survey could realistically be adopted in provider settings.
Costello valued the safe, inclusive environment created by the research team. “They set a tone of respect and dignity from the start,” he says. “Everyone had a right to be heard. It made it easy to share honest feedback.”
Manfredi stresses the importance of including people with lived experience in every step of the process. “Unless our voices are heard, people are often making assumptions and guesses about what is best for us. But when we have a voice, we can say what best supports us. Nothing for us, without us.”
Costello echoes this sentiment from the provider perspective. “It is meaningful work. Sometimes you get goosebumps hearing the researchers talk about it. I feel privileged to share my experience as a CEO supporting people in their homes.”
Kish emphasizes that both councils helped keep the work accountable to person-centered values. “Their input has been invaluable,” she says. “They kept us focused not just on building tools, but on building tools that matter.”
Both councils agree that advisory structures like this should become the norm. “This type of advocacy and advisory group should be something that all organizations should have from the very beginning,” explains Manfredi.