Celebrating the 25th Anniversary of the 1999 Supreme Court decision Olmstead v LC
Understanding the Olmstead Decision
Twenty-five years ago, the Supreme Court decided that people with disabilities deserve to be able to live in their homes and communities. The landmark court case, Olmstead v. LC, laid the groundwork for people with disabilities to live independently, calling for a future beyond institutional living. We celebrate this anniversary on June 22nd.
Olmstead was a critical civil rights decision for the disability community. Based on the Americans with Disabilities Act, it held that people with disabilities have a right to receive supports and services in their communities whenever it’s decided that: 1) a treatment team agrees that community living is possible, 2) the person wants to live in the community, and 3) community-based services constitute a reasonable accommodation. It established that unjust segregation of people with disabilities in institutions constituted discrimination under the ADA.
Community living in 2024
Twenty-five years after the Olmstead decision, we still have a way to go to realize the vision it set out. Home and Community-Based Services (HCBS) covered through Medicaid offer a primary pathway to realizing this vision. HCBS offer long-term services and supports (LTSS) that empower people with disabilities to live independently in their communities. These supports can range from speech therapy to assistance with daily errands, meal prep and cleaning. Self-determination is a core value of the HCBS program, supporting better quality of life and community engagement for people with disabilities. Today, over half of the funding for long-term supports and services goes to HCBS. This has expanded community living tremendously since the 1999 Supreme Court decision, though there is much more to be done before reaching full community inclusion.
Medicaid LTSS programs have historically been known to have a structural bias towards institutional care, as these programs are required to deliver nursing facility services. Home and community-based services (HCBS) are delivered as a state Medicaid option and are typically accessed through waivers. Thanks to the Olmstead Act and recent developments to implement community living, spending has increased for HCBS through these waivers. However, the issue with providing these essential services through waivers is that waivers can be capped and can lead to long waiting lists. These waiting lists, according to the Kaiser Family Foundation, can then lead to the institutionalization of people with disabilities, a direct violation of the Olmstead Act. In 2023, there were over 692,000 people on waiting lists, with a wait time of 36 months, down from 45 months in 2021. Those who make up these waiting lists often include those with intellectual or developmental disabilities eligible for care through state Medicaid programs or for HCBS benefits. We hope that the proportion of LTSS users accessing HCBS continues to grow, especially among states that have yet to fully implement these programs.
Since all states manage their programs a little differently, there is no single standard of care provided under Home and Community-Based Services for those receiving them. Services are available in all states for people with intellectual or developmental disabilities (I/DD), seniors over 65, and adults with physical disabilities. However, services for people with traumatic brain injury (TBI), spinal cord injury (SCI), children, and people with mental health challenges differ by state. The ability to self-determine services under HCBS is not available for all recipients. People with mental health challenges are the least likely to be able to direct their care. Many advocates have proposed that HCBS should be provided with full coverage for all who need it across all states, requiring a major change in our national health policy.
HCBS in a time of Public Health Emergency
HCBS services have been critical especially during the COVID-19 pandemic, and their availability has been changing due to broader public health pressures. During the COVID-19 public health emergency (PHE), increased Medicaid funding allowed for greater access to HCBS. This allowed 57% of the overall Medicaid budget to be used on long-term care services through HCBS. Overall, states used this funding increase to expand access to HCBS services and workers. However, those who utilized these services often faced greater risk of exposure to COVID-19 along with a decreased amount of HCBS staff.
States also implemented changes to state Medicaid programs that expanded services during the PHE including home-delivered meals, medical supplies/equipment, family caregivers being compensated as paid providers, removal of prior authorization, virtual HCBS assessments via telehealth, and an increase in eligibility and enrollment. When the PHE ended, the Centers for Medicare and Medicaid Services (CMS) announced a few waivers would expire, and some services would roll back as well. These waivers covered enrollment flexibilities and modifications of Medicaid and CHIP requirements.
After the PHE ended in November 2023, some HCBS provisions were made permanent, such as increases in usage of telehealth. Other permanent changes included family caregivers being eligible to receive compensation for care in some states, though adequate staffing and family caregiving are not yet available in all states. During the PHE, 39 states reported that they would allow family caregivers to be paid due to the healthcare workforce shortage but after 2023, 20 states continued using this provision. Most of the states that continued to keep PHE-era HCBS provisions have also adopted the Affordable Care Act’s Medicaid expansion coverage, increasing and maintaining access to HCBS. The Administration for Community Living reported that after the unwinding, services such as virtual in-home visits would end and be conducted in-person.
While states continue to make decisions on what PHE-era provisions for HCBS they will continue to implement during the Medicaid unwinding, the Department of Justice (DOJ) carries on with holding state Medicaid programs accountable. A more recent case in 2023 involved the DOJ suing the state of Colorado for segregating people with disabilities in nursing facilities. Back in 2020, the DOJ sued the state of North Dakota in finding that the state did not administer long-term services and supports to people with disabilities in the “least restrictive setting appropriate.” Both these cases directly violated the Americans with Disabilities Act (ADA) and the Olmstead Act and were required by the DOJ to provide reasonable and appropriate accommodation for people with disabilities within their own communities.
Furthering Olmstead implementation is the creation of a recent rule change under the Rehab Act. Section 504 of the Rehabilitation Act of 1973 established that people with disabilities could not be denied benefits or face discrimination in any program or activity that receives federal financial assistance. In May 2024, the Department of Health and Human Services (HHS) finalized a rule, with the help of the Administration for Community Living and the Office for Civil Rights, that further strengthened this law and the implementation of HCBS by addressing discrimination in medical treatment and set higher standards for accessible medical equipment, as well as accessible content online. In relation to community living, this finalized rule details requirements to ensure nondiscrimination in the services provided by HHS-funded agencies and requirements to provide services in integrated settings, such as receiving services in one’s own home through home and community-based services appropriate and accessible to the needs of people with disabilities. This rule also requires the provision of HCBS to people with disabilities and will help organizations and programs of these services better comply with these rules.
Looking Ahead
The Olmstead Act established a historical precedent that placed community services and supports at the forefront for people with disabilities to live independently, turning away from institutional living. Yet there is much more work to be done, as people with disabilities are still facing obstacles to full participation in their own communities. Looking back on the 25th anniversary allows us to celebrate the great feats this decision has made while also critically evaluating our current systems in place.
Additional Readings and Resources