Strengthening the HCBS Ecosystem – Responding to Dangers of Congregate Settings during COVID-19
SCOPE AND PURPOSE:
In the wake of the disproportionate death toll in congregate settings during the COVID-19 pandemic, this report examines weaknesses in the home- and community-based services (HCBS) ecosystem and outlines a roadmap to expand community living options to meet the needs of people with disabilities across the life span. The report builds upon findings in NCD’s 2021 Progress Report: The Impacts of COVID-19 on People with Disabilities (2021) and Deinstitutionalization: Unfinished Business (2012) and illustrates that each piece of the HCBS ecosystem must be working at full capacity to ensure that appropriate community living options and supports remain available to people with disabilities.
In 1999, nearly a decade after Congress enacted the Americans with Disabilities Act (ADA), the Supreme Court’s Olmstead v. L.C. decision clarified public entities’ obligation under Title II to provide programs and services to people with disabilities in an integrated setting. While many predicted that the Olmstead decision was a momentous step forward for the deinstitutionalization movement, the intended massive transition away from reliance on institutions continues to encounter barriers that results in unnecessary institutionalization as opposed to receiving HCBS.
For this report, NCD held six convening sessions in 2021 that included a mixed group of healthcare policy experts, Centers for Independent Living directors and staff, policy think tank members, advocates for the aging, community living experts, direct support providers, and HCBS users. NCD also conducted 25 interviews, a literature review, and hosted public comment with specific prompts germane to the report’s research.