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Preserving Lois and Elaine's Legacy

June 22, 2024

AUCD Executive Director John Tschida reflects on the 25th anniversary of the Olmstead Decision.

June 22 marks the 25th anniversary of the U.S. Supreme Court’s landmark ruling in Olmstead vs. L.C., a case that successfully challenged the unnecessary institutionalization of people with disabilities. It’s impossible to overstate its importance and impact.

The Court held that unjustified segregation of people with disabilities is a form of unlawful discrimination under Title II of the Americans with Disabilities Act (ADA) and Section 504 of the Rehabilitation Act. It imposed on states an obligation to ensure that people with disabilities can receive services in the most integrated setting appropriate to their needs. Simply put, choice matters, and unjustified isolation “is properly regarded as discrimination based on disability. Institutional placement of persons who can handle and benefit from community settings perpetuates unwarranted assumptions that persons so isolated are incapable or unworthy of participating in community life."

Since Olmstead, the Medicaid program has been a primary vehicle for complying with the ruling. According to MACPAC, in 1999, 74 percent of total Medicaid long-term services and supports (LTSS) spending went to institutions; 26 percent went to home and community based services (HCBS). In 2013, spending in the two groups was about equal. According to Mathematica, in 2020 (the most recent data available), HCBS spending hit 62.5 percent. While this is good news, the data masks important differences at the state level. Many southern states, for example, significantly lag states in the northeast and pacific northwest in their efforts to increase HCBS spending.

Many federal initiatives and investments have contributed to implementing and upholding the promise of Olmstead. The Money Follows the Person program has facilitated the transition of thousands of people from institutional to community settings. The Affordable Care Act (ACA) included the Community First Choice Option, providing states with extra money and incentives to expand in-home attendant care services. Forty-six states now have Medicaid buy-in programs, which allow employed persons with disabilities to keep their Medicaid coverage and gain or maintain access to critical in-home supports. The HCBS Settings Rule is laser-focused on ensuring full access to the benefits of community living and receiving services in the most integrated setting. While far from perfect, these initiatives, and many more, have positively impacted people with disabilities across the age continuum.

But significant demographic, political, and economic challenges remain, reminding us that hard-fought victories over the last few decades require constant attention if they are to be preserved.

Olmstead did not mandate access to HCBS for everyone, nor did it eliminate the institutional bias in the Medicaid program guaranteeing a nursing home bed, but not HCBS, if your care needs demand it.

Olmstead has not eliminated the caps many states place on HCBS ‘waivers’, those coveted golden tickets that provide a menu of HCBS services as an alternative to a nursing home placement. As a result, years long waiting lists exist in many states, especially for those with intellectual and developmental disabilities.

While Olmstead led to the expansion of in-home services and a rise in those eligible for direct support professional services, it has not solved the direct care workforce crisis, which is threatening the community living status of people with disabilities nationwide. According to the Commonwealth Fund, the direct care sector will add 1 million jobs by 2031, more than any other occupation. Data from the National Center for Health Workforce Analysis shows the demand for direct care workers is projected to increase by 48 percent for nursing assistants, 43 percent for personal care aides, and 42 percent for home health aides between 2020 and 2035. Where will they come from, when pay remains low, benefits often nonexistent, and career pathways to retain them are few and far between?

Meanwhile, HCBS providers are increasingly shutting their doors or turning away new clients, ravaged by the compound effects of the COVID pandemic and not enough workers to meet demand. This is leading to increased provider consolidation, (long a trend in the hospital and broader medical community). Mergers create economies of scale for large companies providing supported housing, in-home services, and durable medical equipment, but often at a cost of fewer consumer choices, cherry picking of clients, and little accountability for customer service and quality. The troubling presence of private equity firms in the disability provider world is also a new phenomenon.

In the face of these daunting problems, recent successes should be celebrated. New rules approved by the U.S. Department of Health and Human Services, including major positive changes to Sec. 504 of the Rehabilitation Act, strengthening civil rights protections for people with disabilities and addressing discrimination in medical treatment, among other benefits.

New regulations also strengthen Section 1557, the non-discrimination provision of the Affordable Care Act (ACA). Section 1557 prohibits discrimination on the basis of race, color, national origin, sex, age, or disability in specified health programs or activities, including those that receive Federal financial assistance. The new changes now address intersectionality of disability and race, and improved accessibility and language access, among others.

Finally, the sweeping HCBS Access Rule contains many provisions to bolster the quality of services while increasing transparency, including the public reporting of Medicaid rates, quality measures, and the aforementioned HCBS waiting lists.

Taken together, these regulations embody the true spirit of Olmstead, focusing on access, choice, and improved quality of life outcomes as a result. They address not just where we live, but how we live.

The future is ours to shape and it demands coordinated and unified advocacy, linking promising practices and programs with needed research to better understand what’s working, and often (more importantly) what isn’t. Policy progress has been steady but must continue. Lois Curtis and Elaine Wilson, the plaintiffs in the Olmstead case, were right to challenge the limits of institutional living. It’s our responsibility to preserve their legacy, and improve ours.

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Topic(s): Health and Wellness , Policy and Advocacy