Editor’s note: Today’s blog post is written by Angel Love Miles, Ph.D, Access Living’s Healthcare and Home and Community Based Services Policy Analyst, and guest blogger Hailee M. Yoshizaki-Gibbons, Ph.D, a Postdoctoral Fellow in Biomedical Humanities at Hiram College.
COVID-19 Demonstrates Need for Expanded Home and Community-Based Services
According to the Illinois Department of Health, more than 4,000 people living and working in long-term, congregate care settings have died from COVID-19, representing more than half of all COVID-19 related deaths. Nationwide, deaths connected to nursing facilities account for at least a third of COVID-19 related deaths. In response to this tragedy many families, policymakers, and the media have called for greater investment in congregate care, asserting that more funding will allow long-term care facilities to keep residents and staff safer.
However, this view is short sighted and neglects several important realities:
- Many disabled people in nursing homes would prefer to live in the community
- Home and community-based care is more affordable than institutional care
- Congregate care furthers racial and class disparities.
What the COVID-19 crisis demonstrates is not a need to increase institutional funding, but rather a need to invest in and expand home and community-based services.
People with disabilities, particularly those on Medicaid, are regularly put in nursing homes despite laws mandating they receive care in the least restrictive setting. Too often, they are not even made aware of home and community-based options, or the structures in place do not adequately support their needs due to a lack of funding and a lack of needed support for family and community care providers.
Home and Community-Based Services typically cost less than institutional care even when appropriately funded. Yet, our state continues to support institutionalization. According to the ADA Participatory Action Research Consortium, Illinois still institutionalizes 6.7% of its people with disabilities, compared to roughly 5% nationwide, and the Going Home Coalition of Illinois reports that Illinois is the third most institutionalized state in the nation. There is a direct relationship between the high rate of COVID-19 deaths in Illinois and its rate of institutionalization.
Furthermore, according to the Centers for Disease Control and Prevention, approximately 70% of nursing homes are for-profit. These facilities are more likely than nonprofits to be understaffed, overcrowded, and to invest fewer resources in caring for residents. Black and Latinx people are also more likely to be confined in these facilities, not only subjecting them to subpar care, but increasing their risk for contracting and dying from COVID-19.
We can and must do better. Relying on institutions to care for people with disabilities is no longer sustainable and perpetuates health disparities—endangering entire communities, particularly in the midst of a global pandemic. That’s unacceptable especially when we know that Home and Community-Based Services allow disabled people to receive the care and support they need while remaining in their homes and communities.