In September, the National Institute on Minority Health and Health Disparities designated people with disabilities as a health disparities population, making available new funds to help understand and eliminate health disparities that contribute to poor health among people with disabilities. 

Read about how nation-wide support from people with disabilities and advocates, and a petition penned by Jae Kennedy, Professor of Health Policy and Administration at Washington State University’s College of Medicine and Bonnielin Swenor, MD, MPH, Director of the Johns Hopkins University Disability Health Research Center, helped push through the designation.

A new bipartisan bill aims to raise the asset cap for Supplemental Security Income for the first time since the 1980s. New research investigates the impact of raising it even higher than the proposed new limits as well as eliminating the asset cap altogether. 

A long career in advocacy, policy and nonprofit organizations focused on helping improve health outcomes for older adults and people with disabilities led Rosa Plasencia to a leadership role at ADvancing States.

CROR’s Rehabilitation Research and Training Center on Home and Community Based-Services (HCBS) is funded by a 5-year, $4,375,000 grant from the National Institute on Disability, Independent Living and Rehabilitation Research. The Center is now in its fourth year.

The Center is conducting three research projects, all of which support improving the delivery of person-centered services in HCBS: 1) develop and test measures of person-centered, non-medical outcomes and effectiveness of supports for those who receive HCBS; 2) identify best practices and supports for the workforce to support person-centered HCBS delivery, and 3) create training materials for HCBS providers designed to support person-centered care delivery and coordination. Each of these three projects has made significant progress in the last several months. Additional projects focus on translating knowledge about HCBS to users, providers, and policy makers.

Project 1

The research team created a set of questions designed to measure person-centered, non-medical outcomes and effectiveness of supports for those who receive HCBS. These questions address nine topics: choice and control over diet and nutrition, money, how time is spent, personal expression, meaningful relationships, living arrangements and health care as well as dignity of risk and community engagement. The topic areas were identified with  input from an advisory council of people who use HCBS. After creating these questions, the research team tested them through cognitive interviews, to assess the clarity of the questions and response options. The research team will begin pilot testing of the questions, to assess their validity and reliability, as well as the feasibility and utility of data collection. Pilot testing will include 400 HCBS users answering the questions 2-3 times to capture changes on responses across time. HCBS users will be recruited from a wide range of geographic locations and will represent diverse disability populations.

Project 2

RRTC researchers are also working on a case studies project to highlight organizations that do an exceptional job of providing person-centered HCBS. The case study adopts a strengths-based approach to the study, highlighting what is going well in person-centered practice, and supporting organizations trying to improve their person-centered services. Researchers identified organizations through a campaign asking for nominations. In the next few months, the researchers will interview leaders, providers and users of HCBS at organizations identified during the nomination process and draft case studies based on those interviews.

Project 3

Development of the content and curriculum for the person-centered HCBS training is underway. Along with collaborators from Support Development Associates, experts in developing and providing person-centered trainings both nationally and internationally, the CROR team is developing training that combines Motivational Interviewing with Person-Centered thinking. The team received feedback on their project from two advisory committees and will be recruiting three organizations that provide HCBS to undergo the training for free and provide feedback on the materials starting spring 2024.

If you are interested in testing the HCBS measure set, nominating an organization, or receiving the training, email [email protected].

In November, researchers in CROR's RRTC on HCBS gathered at Shirley Ryan AbilityLab to discuss next steps for pilot testing a set of measures to evaluate the achievement of person-centered outcomes in people who receive home and community-based services. You can learn all about the measures in our latest episode of INside the OUTcomes: A Rehabilitation Research Podcast (see below).

From left to right: Niveda Tennety, senior project coordinator; Ross Kaine, research assistant; Sara Karon, co-principal investigator; Steve Lutzky, collaborating consultant; Bridgette Schram, PhD, project manager; Anne Deutsch, clinical research scientist; Elise Olsen, research assistant; John Abbate, research assistant.

We found some recently-published articles and reports related to our research and wanted to share them with you!

The HCBS RRTC staff monitor the literature for relevant articles and reports. We found some recently published articles and reports related to our research and wanted to share them with you!

Mayer, J. Literature Review: Utilization of Home- and Community-Based Services (HCBS) in Diverse Communities - LTQA. Long Term Quality Alliance. November, 2023.

Applied Self Direction report. Bridging the Gap: Insights into Strengthening the Self-Directed Workforce. October, 2023.

Friedman, C. Supporting Families: Formal HCBS Supports for Informal Family Caregivers of People with IDD. Journal of Developmental and Physical Disabilities. November, 2023.

 Burns, A., Mohamed M., and O’Malley Watts, M. A Look at Waiting Lists for Medicaid Home- and Community-Based Services from 2016 to 2023. Kaiser Family Foundation. November 29, 2023.

Dutton, M., Glanz Reyneri, D., Ferguson, M. New Federal Guidance on Services Addressing ‘Health-Related Social Needs’ Under Medicaid. Manatt Health Highlights newsletter. December 18,2023.

Jones, K. A., Clark, A. G., Greiner, M. A., Sandoe, E., Giri, A., Hammill, B. G., Van Houtven, C. H., Higgins, A., & Kaufman, B. Linking Medicare-Medicaid Claims for Patient-Centered Outcomes Research Among Dual-Eligible Beneficiaries. Medical Care. December, 2023.

John Abbate, a research assistant in CROR's RRTC on Home and Community-Based Services, presented "Creating an Accessible Document from a Policy Brief" at KTDRR’s 2023 Virtual KT Conference on Dec. 9. He discussed how he created a plain-language document from the brief, "The influence of disability models on person-centeredness in Home and Community-Based Services," developed by CROR.

The National Center on Advancing Person-Centered Practices and Systems has created a new resource, A Guide for Developing Strategic Initiatives to Expand Self Direction, which offers a road map for public managers and advocacy organizations looking to make self-direction more available and accessible in their own states.

The contents of this newsletter were developed under a grant from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR grant 90RTGE0004). NIDILRR is a Center within the Administration for Community Living (ACL) in the Department of Health and Human Services (DHSS). The contents of this newsletter do not necessarily represent the policy of NIDILRR, ACL or DHSS.

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