| Another Setback for Home- and Community-Based Services

| Allison Cook

| The federal Department of Justice (DOJ) delivered yet another blow to home- and community-based services (HCBS). It released a memo in June reinterpreting states obligations under disability rights laws like the Americans with Disabilities Act (ADA) and the Supreme Court’s decision in Olmstead v. L.C., which has been the foundation of decades of policy, investment and regulation, guaranteeing the right to receive services in the most integrated setting (e.g., in the home or community, rather than in a nursing home). Building on that memo, DOJ released a notice on July 20 that it will no longer follow its own enforcement guidance that has been in place for 15 years. This latest blow to HCBS access comes as aging services advocates have been fighting the impact of other federal policy changes on HCBS – ranging from Medicaid cuts, to immigration and other policy changes, to flat-lining Older Americans Act funding. 

The memo argues that decades worth of regulations and policy are regulatory overreach. While acknowledging that the Supreme Court in Olmstead ruled that unjustified institutionalization can be disability-based discrimination, DOJ posits that states have no obligation to provide services that ensure that people can live in their own homes and communities. It acknowledges that this reinterpretation is inconsistent with decades of law and policy, stating, “We recognize that this view of Olmstead‘s import is out of step with the common understanding of that decision within the federal courts.” The Federal Register Notice implements this new, limited view of Olmstead protections by changing how, and whether, these protections will be enforced by DOJ. 

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What Does This Mean for Older Adults?

Olmstead protects the right to receive care in the most integrated setting, including in the home or other community settings. This right has allowed many older adults to remain in their homes much longer than otherwise possible. It has contributed to Medicaid programs offering home care services, transportation, housing assistance, meal preparation, assistive technology, and much more. 

Advocates emphasize that the reinterpretation of Olmstead threatens the well-being of older adults and people with disabilities. The reinterpretation and backing away from enforcement by DOJ could force many people into nursing homes. Such institutionalization is more costly and generally not the preference of older adults or their families.

What Has Changed So Far?

This memo is only an opinion at the moment. Disability rights laws like the ADA, the integration requirements in their regulations, and the Supreme Court’s Olmstead decision all remain in force. But it does have a few concrete impacts. Alison Barkoff, Director of the Hirsh Health Law & Policy Program at George Washington University and former DOJ special counsel for Olmstead enforcement, shared during a webinar, “First, we already see DOJ trying to get courts to adopt this position…trying to tee up the Supreme Court to revisit Olmstead, which would be incredibly dangerous.” DOJ has historically been the largest enforcer of Olmstead. Its abandonment of this effort will significantly reduce enforcement, especially with the new Federal Register notice – but private lawyers can still bring cases to court. She then shared that she expects to see additional regulatory efforts to undo long-standing regulations that support people with disabilities (including older adults with disabilities) to receive care in the most integrated setting. 

Read our interview with Alison Barkoff

What Advocates Are Doing About It

The American Association of People with Disabilities, Justice in Aging, the National Council on Independent Living and other advocacy organizations are working to showcase what Olmstead means for older adults and people with disabilities, sharing stories about what’s actually at stake. Some are already writing to governors, legislators, and other policymakers to underscore the importance of protecting the right to receive services in the most integrated setting. Many are also preparing for legal fights.

For the millions of older adults currently living at home because of a Medicaid HCBS waiver, none of this is abstract. It’s the difference between aging in a familiar bedroom and being moved into a nursing facility they never chose. As ADA Watch put it, this memo is “the opening move, not the final judgment.” What happens next — in the courts, in state capitals, and in the regulations DOJ and HHS haven’t yet tried to rewrite — will determine whether that move stands.

Allison Cook is founder of Better Aging and Policy Consulting.