Twenty-Five Years Gone: The Olmstead Decision and Life Beyond the Nursing Home By Laurie Facciarossa Brewer, New Jersey Long-Term Care Ombudsman
An institution is a large, impersonal space that feels more like a warehouse than a home. No one I have met would choose to live there, yet for decades it was the typical fate for anyone who needed intensive care or services
Luckily, that began to change in 1999 when the U.S. Supreme Court ruled, in Olmstead v. L.C. and E.W., that unnecessary institutionalization constitutes unlawful discrimination under the Americans with Disabilities Act.
The decision — along with robust advocacy and state litigation to enforce Olmstead’s provisions — helped individuals with mental illness or developmental disabilities to leave institutions and live in appropriate, home-like settings in communities across New Jersey.
Olmstead’s legacy in securing the rights of people with disabilities or mental illness is for others to evaluate. My focus is on a lesser known group that also benefited from the ruling: Tens of thousands of people living in New Jersey nursing homes.
This Saturday, June 22, marks 25 years since Olmstead — a milestone anniversary that offers a prime opportunity to reflect on how the ruling has benefited long-term care residents and how far we have to go to achieve the person-centered system we envision.
As advocates for long-term care residents, my staff and I are committed to nursing home reform. We want to reverse New Jersey’s traditional overreliance on nursing homes. We believe the federal and state governments should invest more to help people age in place. If nursing homes must exist, we argue that they should be smaller, home-like places.
Make no mistake: Many of the nursing homes we have now are institutions, not residences. According to Nursing Home Compare, a website run by the U.S. Centers for Medicare and Medicaid Services (CMS), New Jersey has about 350 nursing homes, and 80 percent of them are licensed for 100 beds or more. A significant minority have 200 beds or more.
Such large nursing homes are not conducive to quality care or a home-like environment. They are largely owned by for-profit companies or private equity firms that have a greater incentive to extract profit than to create a home-like, quality environment for the residents. It all adds up to a potentially bad situation for the 39,000-plus individuals who live in those nursing homes.
Of course, there are many nursing homes, especially the mission-driven ones, that provide excellent care and whose staff are highly dedicated and attached to the residents.
The traditional hospital-like nursing home model is flawed, not the people who work in this model.
As importantly: Many of the people who live in nursing homes do not need or want to be there. They are perfectly capable of living in the community, with appropriate supportive services in place. And it turns out that serving people in the community is cheaper than maintaining them in high-cost nursing homes.
New Jersey has made progress in helping nursing home residents move to the community, thanks to I Choose Home NJ, a partnership between the state Department of Human Services (DHS), the Office of the New Jersey Long-Term Care Ombudsman (LTCO), and CMS. Funding is derived from Money Follows the Person, a CMS program that began as a demonstration project two decades ago in response to the Olmstead ruling.
Since July 2008, I Choose Home NJ has helped more than 4,400 New Jerseyans move from nursing homes to the community — that averages to five people every week for 16 years.
This is an amazing accomplishment, but there is much more to be done.
Our population continues to age. More and more individuals will need long-term care, and New Jersey will no doubt continue to revamp its policies and reinvest public money away from nursing homes and into home and community-based services.
Today, about 63 percent of Medicaid-eligible individuals receiving long-term services and supports are in their own homes, proving that the State's efforts to rebalance the long-term care system have been successful. Building on that, a recent report issued by the New Jersey Task Force on Long-Term Care Quality and Safety recommended setting a goal to increase that proportion to 80 percent in just three years.
We wholeheartedly support that goal. Yet there is no magic wand to make it happen overnight.
Affordable housing is scarce in New Jersey, which limits our ability to move people out of nursing homes as quickly as we would like. We need to continue to create more flexible Medicaid eligibility rules. Above all, we need additional federal funds to match increases in state funding dedicated to home and community based services.
We have a long road ahead of us, but we are headed in the right direction. And the Olmstead decision certainly helped to clear the way.
Laurie Facciarossa Brewer, New Jersey’s Long-Term Care Ombudsman, manages an independent state agency dedicated to the mission of advancing the rights, dignity, and self-determination of adults living in long-term care. Learn more about I Choose Home NJ at https://www.nj.gov/ooie/ichoose/.
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Official Site of The State of New Jersey
