The Politics of Autism includes an extensive discussion of insurance and Medicaid services for adults with intellectual and developmental disabilities. Home and Community-Based Services (HCBS) are particularly important.
Today the National Council on Disability releases a report examining weaknesses in the home- and community-based services (HCBS) ecosystem, taking stock of the preventable disproportionate death toll in congregate settings during the COVID-19 pandemic.
Strengthening the HCBS Ecosystem – Responding to Dangers of Congregate Settings during COVID-19 builds upon findings in NCD’s 2021 Progress Report: The Impacts of COVID-19 on People with Disabilities and 2012 report Deinstitutionalization: Unfinished Business. The report illustrates the interworking of the HCBS ecosystem, including the direct care workforce and an adequate accessible, affordable housing inventory, and how HCBS is safer, costs less, and is the preference of most individuals over institutional settings.
Currently, 820,000 people with disabilities remain on wait lists to transfer out of institutional settings. During the first year of the pandemic, 35,000 nursing home residents died of COVID-19, representing 42% of the total deaths in the U.S.
“For many people with disabilities during the pandemic, congregate settings had a devastating impact,” said NCD Chairman Andrés Gallegos. “In many instances, social distancing wasn’t achievable and the inability to transition out of such a setting became a death trap.”
NCD found that approximately 14 million Americans of all ages need HCBS, with 40% being adults under 65 years old, and people younger than 30 years old making up the fastest growing nursing home population.
“Severe shortages of direct care workers and available affordable, accessible housing are just two examples are longstanding fragilities in the HCBS ecosystem,” said the Chairman. “The neglect in addressing these matters led to the preventable deaths of scores of Americans with disabilities and will again if policymakers don’t act.”
The report offers NCD’s key recommendations to create a new paradigm – the Community Living Bias – with pointed recommendations for policymakers for Medicaid, the direct care workforce, housing policy, hospital discharge planning, COVID-19 flexibilities and waivers, and data collection.
From the report:
Intersectional inequities are also present in an analysis of HCBS outcomes and successful interventions. A 2019 study focused on the potential of HCBS waivers to reduce disparities in unmet need among children of color with autism spectrum disorder.136 States with 1115 waivers from the Federal Government offered expanded eligibility for HCBS, which differed in the “generosity” (i.e., the amount of services offered, number of participants allowed and duration). The study found that waivers with the highest “generosity” were most effective in closing disparities between Black and White children with autism.137 The State of Washington also used 1115 waivers to expand access to HCBS services to “pre-Medicaid” individuals to divert institutionalization.138 These findings provide important implications that the presence of a waiver alone, without consideration of the inequitable baseline, may not address racial, ethnic, age, or other inequities.
- 136 LaClair, Michelle, David S. Mandell, Andrew W. Dick, Khaled Iskandarani, Bradley D. Stein, and Douglas L. Leslie. “The effect of Medicaid waivers on ameliorating racial/ethnic disparities among children with autism.” Health services research 54, no. 4 (2019): 912-919. Strengthening the HCBS Ecosystem 85
- 137 Id.
- 138 Anthony, Stephanie, Arielle Traub, Sarah Lewis, Cindy Mann, Michelle Herman Soper, and Stephen A. Somers. “Expanding Access to HCBS for “Pre-Medicaid” Individuals to Prevent or Delay Nursing Facility Utilization: A Strategy for Strengthening Long-Term Services and Supports.”