June 22nd, 2024 marked the 25th anniversary of the landmark U. S. Supreme Court Olmstead decision, which held that under the Americans with Disabilities Act people have a right to receive treatment and services in less restrictive settings. The Olmstead decision helped push open the doors of nursing homes for many people with disabilities and older adults, who would prefer to receive long-term care at home or in the community. Such long-term care services typically provide for someone’s essential, but non-medical health or personal care needs, such as bathing, eating, using the toilet, or dressing. Covid-19, when roughly 160,000 residents in nursing homes died, further fueled the desire of many people to avoid a nursing home, if they could help it.

Two recent developments in keeping with Olmstead have brightened the prospect of receiving long-term care at home or in the community. One example comes from reliably blue Massachusetts and the other from just as reliably red North Dakota. In October 2022, two non-profit legal organizations, the Center for Public Representation (a grantee of the JEHT Foundation, where I used to work in the early 2000s) and Justice in Aging (a grantee of The John A. Hartford Foundation, where I currently work), partnered with a pro bono team from the law firm Foley Hoag, LLP, and brought a class action lawsuit against the Commonwealth of Massachusetts. The suit is on behalf of people who are unnecessarily institutionalized in nursing homes, when they could receive care at home or in the community with appropriate assistance. In April, the parties entered into a settlement agreement that was approved by the Court on June 18th. Under the terms of the agreement, the Commonwealth is required to have teams trained in cultural and linguistic competencies that will counsel people in nursing homes about their options to receive long-term care at home or in the community, and then help them navigate through the thicket of available programs and services, eligibility requirements, and applications. The Commonwealth commits to reaching specific numbers of nursing home residents – 2,400 over the eight-year term of the agreement – and helping them move back into home and community settings.

A similar case from North Dakota dates from 2020. In that case, after its investigation the Justice Department entered into a settlement agreement with North Dakota, in which the state was set on a plan to counsel people in nursing homes about their options to live at home or in the community, and then help them apply for the necessary benefits and services to reach these goals. As in Massachusetts, the onus is on the state to help people understand their options and work with them to achieve their goals. Typically, older adults, people with disabilities, and their families have no idea where to turn for unbiased information and practical guidance about long-term care. North Dakota committed to helping 2,280 people move back into the community over the eight-year term of its settlement agreement.

Efforts in Massachusetts and North Dakota are important, because the law is not entirely on the public’s side, when it comes to receiving long-term care at home or in the community, despite Olmstead. Many Americans probably don’t realize it, but they have a right to Medicaid-funded long-term care in a nursing home, if they qualify for it. But they don’t have the same right to Medicaid-funded care at home or in the community. Medicaid, the federal and state-funded health insurance program for eligible low-income adults, people with disabilities, and others, is important, because it’s the largest payer of long-term care in the U.S. (Medicare, the federal health insurance program for older adults and people with disabilities, pays for more limited stays in nursing homes or care at home for qualified beneficiaries, when it is medically focused. Medicare does not cover long-term care.)

Medicaid law and Americans with Disabilities Act are not in agreement here. In response, federal and state governments and the courts have created a complex approach to make home and community-based long-term care more available, but these efforts stop short of guaranteeing a right to such care funded by Medicaid. As a result, there are approximately 700,000 people on waiting lists who would like to receive care at home or in the community but are unable to do so.

Older and disabled low-income people being institutionalized and unnecessarily held against their will by the mechanisms of the state, not surprisingly, probably makes most Americans bristle. Congress could eliminate the institutional bias within Medicaid by creating laws and regulations that enable eligible beneficiaries to receive care in settings that most reflect their needs and preferences, as well as guidance from their treatment providers. But until that time, other states should follow the examples of Massachusetts and North Dakota as a way toward further realizing the intended goals of the Olmstead decision – depending, of course, on whichever state their constituents and elected leaders uphold as a beacon for the future.

This article was originally published 6/27/24 on LinkedIn by senior program officer Scott Bane.