This year marks twenty-five years since the pivotal Supreme Court decision in Olmstead v. Lois Curtis and Elaine Wilson. On June 22, 1999, the Supreme Court held that segregation of individuals with disabilities is a form of discrimination under the Americans with Disabilities Act, and clearly established the right to community living.
In some years, the joy of Olmstead feels palpable. And in other years, the threats feel imminent.
This year, I feel both at once.
This year, I plan to both joyfully celebrate Olmstead, and at the same, solemnly commemorate this anniversary.
I will joyfully celebrate how much we have achieved over the past 25 years, and particularly in the past year. In just the past year, the Department of Health and Human Services (HHS) finalized the first update to Section 504 regulations (“Nondiscrimination on the Basis of Disability in Federally Funded Programs and Activities”) in over 40 years. In doing so, HHS codified the requirement to provide services—including Medicaid-funded services—in the most integrated setting. In the same rule, HHS protected the right of children to remain with their parents, and to not have to enter foster care or more restrictive settings just to receive services. Additionally, HHS finalized rules regarding Section 1557 (“Nondiscrimination in Health Programs and Activities”). The rule clarifies that the Olmstead mandate applies to insurers and that discriminatory benefit design will no longer be tolerated. For example, a health insurer that only provides reimbursement for residential mental health services, but does cover similarly intensive community-based services, may be in violation of Section 1557. HHS has also taken important steps to improve access to home and community-based services (HCBS) and to ensure that the workers who provide HCBS are fairly compensated, by finalizing the Medicaid Access Rule. Work continues on the HCBS Settings Rule, which still holds the promise to ensure that Medicaid-funded HCBS is delivered in truly community-based settings. The list of administrative achievements in the past year goes on and on.
This year also marked important advances in enforcement, with significant milestones in the settlement and implementation of systemic remedies in class actions seeking the expansion of intensive home and community-based mental health services for children experiencing unnecessary institutionalization in residential facilities or perpetually at risk of it. The settlement agreement entered in the Colorado children’s mental health services case promises to expand community based services. That settlement builds upon the pioneering work to expand intensive home and community-based services for children with mental health conditions in the Katie A. litigation, whose decades-long implementation efforts culminated this year. The federal government has also played a crucial role in enforcement, with the Department of Justice (DOJ) finding violations in Utah, Missouri, Nebraska, and Maryland, to name just a few. HHS’ Office of Civil Rights negotiated an important agreement in Iowa, requiring the state to provide adequate HCBS to allow an individual to remain in the community.
Last, several pieces of legislation have been introduced that could markedly improve community-based mental health services, and that could help stabilize HCBS funding in the immediate future, as well as build out the type of community-based system we know we need.
Yet we cannot fully celebrate when so many people remain segregated in nursing facilities, psychiatric hospitals, residential treatment facilities, and foster care facilities; relegated to sheltered workshops instead of competitive employment; sent to “special” schools that fail to provide meaningful education; and forced to live in “group homes” that are anything but a home. Just this month, the Senate issued a comprehensive report entitled “Warehouses of Neglect,” detailing the overuse of residential treatment facilities for children with disabilities and documenting horrific abuse. Over twelve states now have special permission to “waive” the “institution for mental diseases exclusion” and obtain more federal funding for institutional mental health settings, risking diverting investment from community-based to facility-based services. We are preparing to tackle changes in HCBS as over $36 billion in pandemic-related HCBS supports expires, while legislative proposals that seek to turn back the clock on community integration loom large. We are still fighting for the right to community living, through litigation in Georgia, Iowa, Louisiana, Michigan, and New York on behalf of children with mental health disabilities who routinely experience unnecessary and harmful institutionalization, and we are monitoring and enforcing settlements to ensure children who need nursing care can remain at home, with their families.
This is why we must not just celebrate, but also pause, take stock of the present threats, and recommit to the work ahead. Finalizing regulations and introducing legislation is not the end of the road. We must diligently ensure that rules are robustly implemented, that legislation becomes law, the right to community living is enforced, and retrenchment is resisted.
