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Recipients and providers of home and community-based services (HCBS) say that better compensation and training for direct service providers would improve the delivery of person-centered HCBS. The findings are based on interviews with HCBS users and providers focusing on systems-level challenges that hinder the delivery of person-centered HCBS. Their findings are reported in Disability and Health Journal.
HCBS supports people with disabilities in living the lives they want to lead in the community rather than in institutional settings. HCBS can include things like help with shopping, household chores, personal grooming and managing appointments. Taking a ‘person-centered’ approach to HCBS means that people who use HCBS have choice and control over the services they receive and that their needs and preferences inform services received.
In 2014, the Center for Medicaid and Medicare Services issued the Final Settings Rule, which required states to ensure that HCBS are person-centered and meet standards for integration, access to community life, choice, autonomy, and other important consumer protections. Despite widespread adoption of person-centered services, systemic barriers influence service users’ and professionals' experiences in receiving and delivering person-centered services.
To identify barriers to delivering person-centered HCBS, researchers in the Center for Rehabilitation Outcomes Research at Shirley Ryan AbilityLab interviewed 20 Medicaid-funded HCBS users 18 years old or older and 22 HCBS professionals including state waiver personnel, managers and direct service professionals about their experiences receiving and providing person-centered services.
The most-commonly cited workforce challenges mentioned by participants were the shortage of direct support professionals and the need for more opportunities for practical training on delivering person-centered planning.
“Participants also spoke about things like resource constraints, staff shortages, and confusing documentation procedures as barriers to HCBS users’ getting their basic needs met and being able to truly exercise choice and control over their lives,” Niveda Tennety, Senior Project Coordinator in the Center for Rehabilitation Outcomes Research and first author on the paper. “Many of our interviewees also mentioned the need for better compensation for direct service providers.”
According to the U.S Bureau of Labor Statistics, in 2023 DSPs made a median hourly wage of $16.12 and an annual wage of $33,530. “Without making a living wage, there is really high turnover among DSPs, and this impacts their ability to deliver truly person-centered services, and for HCBS users to build trust with their providers,” explains Tennety.
HCBS users also said they weren’t able to do things that were important to them because of provider turnover, and that they were acutely aware of the DSP workforce shortage. “I remember one interview in particular with an HCBS user who said that they would settle for a DSP they didn’t feel comfortable with or wanted to work with because they didn’t know when they would be able to find another person that was a better match,” says Tennety.
Resource issues identified by HCBS providers included insufficient state budgets and Medicaid reimbursement rates that didn’t align with users’ needs. Extensive waitlists for HCBS waivers and strict eligibility criteria were other barriers to the provision of HCBS mentioned by providers. Improved access to services, such as through telehealth, was noted as a way to eliminate some of these barriers.
Interviewees also mentioned that sustaining flexibilities activated during the Covid-19 pandemic that allowed HCBS recipients to self-direct their services, including hiring family members, would also improve the person-centeredness of HCBS.
“Our interviews revealed multiple systems-level issues affecting the delivery of person-centered services,” says Bridgette Schram, PhD, a project manager in the Center for Rehabilitation Outcomes Research and an author on the paper. “Policy addressing person-centered practice implementation within systems reforms, beyond the direct providers and workforce, is needed to improve HCBS users’ quality of life in their communities.”
Allen Heinemann, PhD, Jacqueline Kish, PhD, Tonie Sadler, PhD, Ross Kaine and Katie Kaufman of the Center for Rehabilitation Outcomes Research at Shirley Ryan AbilityLab and Steve Lutzky, PhD, of HCBS Strategies, are co-authors on the paper.
This research is supported by the national Institute for Disability, Independent Living and Rehabilitation Research (grant 90RTGE0004).