Systemic barriers hinder person-centered home and community based services (HCBS): Perspectives of service users and professionals.

Background: In response to the 2014 Final Settings Rule issued by the Centers for Medicaid and Medicare Services, home-and-community based services (HCBS) provider organizations strengthened person-centered (PC) planning for HCBS to improve participants' choice and control over their services. Despite the call for widespread adoption of PC services, systemic barriers influence service users' and professionals' experiences in receiving and delivering PC services.

Objective: This study describes the perspectives of HCBS professionals and users on systemic barriers that affect PC HCBS delivery.

Methods: Semi-structured interviews with 20 HCBS users and 22 HCBS professionals explored perspectives on providing and receiving PC HCBS as well as higher level systems challenges to providing PC services. Qualitative analysis focused on participants' perspectives of system-level issues.

Results: Qualitative analysis generated three themes: (1) Workforce considerations; (2) Resources and service access; and (3) Infrastructure for feedback. High direct service provider turnover rates, service-eligibility determination procedures, and waitlists affected service delivery. Participants highlighted a need for increased direct service provider compensation, access to higher-quality training, improved financial resources, and effective feedback infrastructures. Waiver flexibility due to the Covid-19 public health emergency allowed expanded service access and improved quality.

Conclusion: Organizational and system-level issues hinder delivery of PC services. Increased flexibility and resource allocation for service provision, as demonstrated in the Covid-19 public health emergency response, should be sustained. HCBS users' suggestions for service-delivery improvements are consistent with recent state and organizational initiatives. HCBS improvements benefit from user-identified solutions in program development and implementation.