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CROR’s Rehabilitation Research and Training Center on Home and Community-Based Services (HCBS) project is designed to develop an evidence-base about the effectiveness of HCBS for people with disabilities. The research focuses on non-medical, person-centered community living outcomes in particular. This five-year, $4.4 million NIDILRR-funded project is now in its third year. 

Aim 1 of the project is to develop and test person-centered HCBS outcome measures. As a preliminary step, the research group conducted a literature review to identify the extent to which existing HCBS outcome instruments are person-centered. Their results have been published as a pre-print online.

The literature review, led by Lindsay DuBois, former HCBS project manager (now at the Human Services Research Institute), focused on measures of HCBS effectiveness and outcomes. The team limited the search to articles published in peer-reviewed journals after the Olmstead ruling in 1999 through December 2020. They filtered for measures used in HCBS settings that serve people with intellectual or developmental disabilities, physical disabilities, mental health disabilities and age-related disabilities. They identified 25 articles describing measures that fit their criteria for analysis.

While many of the measures included items or questions that were person-centered, they weren’t as person-centered as they could be, explained Niveda Tennety, project coordinator and a co-author on the paper.

“Truly person-centered measures ask if the services received help the individual achieve their goals and the outcomes that they want, but many of the measures we looked at stopped short by simply asking if the recipients had choice. For example, choice in how to dress or choice in self-expression. While these domains are important, the questions don’t always take into account whether or not the individual has choice outside of a few limited options, what the individual’s desired outcomes are, and if their supports are helping them make progress towards their desired outcomes.”

The literature review revealed that there is a need for patient-centered HCBS outcomes measures. Next steps for the research team include developing and testing new measures that report person-centered outcomes. These measures could help better determine how well HCBS services are helping individuals meet their goals.  

Scott Roiter, Tonie Sadler, PhD, Dhrumil Shah, MPH, Jessica Pedersen, OTD, Antoinette Nelson-Rodriguez and Allen Heinemann, PhD, of Shirley Ryan AbilityLab; Sara Karon, PhD, of RTI International and Q. Eileen Wafford of Northwestern University are co-authors on the paper.