Over the last 30 years, one of the biggest shifts in health policy for Americans with disabilities has been an emphasis on helping people live and receive care in their communities, rather than in institutional settings, such as psychiatric hospitals and intermediate care facilities.
A New Year’s Eve ruling from the U.S. District Court for the District of Columbia is expected to accelerate this shift and usher nursing home residents under the community care umbrella. Fifteen years after AARP Foundation lawyers and others filed the initial lawsuit, the court has ruled that the district unlawfully segregated people with disabilities by refusing to move them from Medicaid-funded nursing homes.
“It’s unacceptable to segregate people with disabilities,” said Kelly Bagby, vice president of litigation at AARP Foundation. “It’s also hard to defend segregating people, but states should be forced to defend that position, and that’s what we did with the district. So now they’ve got to implement the court’s order.”
Facilitated by a landmark Supreme Court in 1999, this shift towards community care has proven monumental for people with disabilities. For much of the 20th century, the population had been locked away in institutions, receiving substandard care or altogether abandoned. The Olmstead decision legally empowered people with disabilities to demand community care and gave birth to the home care industry.
But some areas lag behind others in providing such care. In recent years, lawyers have sought to expand the Olmstead umbrella to include nursing facilities. Even though advocates have eyed these reforms since the Olmstead ruling, the issue got public attention recently after the coronavirus pandemic exposed the poor conditions many residents face. These cases could prove particularly vital as the country’s population rapidly ages.
Ivy Brown, one of the named plaintiffs in the AARP Foundation’s lawsuit, entered the Capitol City Rehabilitation and Health Care Center after having a stroke in 2013. She didn’t intend to stay longer than six months, but wasn’t able to leave until shortly before the court ruling. The lawsuit targeted the district, and not the facility, because Medicaid funds were used to fund the institution. STAT spoke with Bagby, the lead attorney, to understand why Brown struggled to leave sooner and the ramifications for Brown, et al. v. District of Columbia could extend beyond the nation’s capitol.
Why did the AARP Foundation bring this case against the District of Columbia in the first place? What are you asking them to change?
Many of our clients were isolated in nursing homes for well over a decade. Both of our main plaintiffs said, independently, “the very first day that I was in the nursing facility, I wanted to get out.” So when we asked, “Why didn’t you?” They were like, “We literally had no idea what to do. Nobody ever told us there was a way out. Nobody ever told us that we could.”
We’re asking the district to create a system to help people navigate their way out of where they are so segregated. We brought this case in the middle of 2010. We tried to negotiate many times and went to trial twice on this case, and they just wanted to fight it all the way to the end. I think the district didn’t want to be stuck in what they would see as a protracted lawsuit, but because they wouldn’t settle the case, they ended up in a protracted lawsuit anyway.
How were residents unable to leave these bad nursing homes? Were the facilities barring the doors?
They weren’t imprisoned, although some of them felt imprisoned. They just didn’t know how to get out. There was nobody helping them to get out because Medicaid is such a complex system. The application process is incredibly complicated. The eligibility criteria are complicated, and then you have to navigate and select providers.
Some of our clients don’t even have IDs when they go into nursing facilities. They’ve never gotten their birth certificate, and they might not even be from this area. So they have to have all of that basic information — ID, a Social Security card, birth certificate — and this is just to get started! If you don’t have any of that, and you have nobody to help you, and you don’t have a cell phone and you don’t have a computer, you have nobody to basically help navigate your way out of this. The system is structured in a way that navigating the system without significant amounts of support is impossible.
When former residents leave a nursing facility, what are they looking for?
First and foremost, they need to know that there is a world in which they can live in their own community. But they need to get, you know, a primary care doctor. They need to identify service providers. They might need new adaptive equipment or home modifications, if they’re in a wheelchair. They would need help with making applications to get housing, to get the services.
They need the basic information that there is this world outside of the nursing facility where you can secure the help that you need. Just because you went into one, you need not stay there the rest of your life.
Why is a city legally responsible for helping nursing facility residents leave?
First and foremost, it’s a civil right under the Americans with Disabilities Act. A state or a governmental entity cannot and must not keep a person in an institution. It is discrimination under the Supreme Court’s precedent in Olmstead versus L.C. If they can avoid that discrimination by making reasonable changes to their system, they must.
Now that home and community-based services are the norm in most places, how does the state say, “No, we really want to keep everybody in nursing homes, even though it’s perfectly reasonable for us to try to provide them case management and transition assistance.”
The D.C. Circuit made it clear that the defendant, the District of Columbia, has to prove that it would be unreasonable to provide transition assistance to people and help them to move to the community. And the court found they just hadn’t proved it — because it’s not unreasonable. If you have to hire staff to do it, then you hire staff to do it.
Where does this ruling sit in the larger case law looking at the institutionalization of people with disabilities?
This country has a long history of isolating people with disabilities in institutions, including and especially the District of Columbia. There have been a number of lawsuits across the country trying to reorient vulnerable people back into communities and away from institutions, away from psychiatric hospitals, away from what were originally called developmental disability centers.
There is a general acceptance now that we will not serve people with mental illness and developmental disabilities and children in institutional settings. But it really took until around 2010 before people said, ‘Why are we keeping older people who have disabilities in nursing facilities?’ The Brown litigation is probably our sixth case that we have brought to deinstitutionalize nursing facility residents.
Why do people go into nursing homes in the first place?
The vast majority of people go into nursing facilities for what they believe is a temporary problem. And if you’re 65 years and older and on Medicare, you can go into a nursing facility for up to 100 days, and then get back out and go live your life. This happens all the time for people who break their hips and need to get rehab or they have a temporary surgery.
What we were seeing in that first year of our investigation with the district is nobody was leaving. They just would stay for their Medicare days and then they would convert to being a Medicaid patient resident, and then they would stay indefinitely until they died. That’s not what is supposed to happen. The nursing homes are supposed to be short-stay places. But in the district, once you got in, there was really no way to navigate your way out.
Initially, the district had [tons] of nursing home beds that were Medicaid-certified beds. By the time the case finished at trial, not only did they have all of those beds filled, but they also started shipping out people to Maryland. So they were increasing their use of nursing facilities, not decreasing — putting more and more and more people into institutional settings and not doing what the ADA and the Supreme Court wanted.
Do you think incoming President Donald Trump’s policies will move the needle in either direction for future Olmstead decisions?
I think the vast majority of courts of appeals are lining up with where the D.C. Circuit has lined up, making it harder and harder for states to be able to say, “We really want to just keep institutionalizing people.” I don’t know that we know what will happen with the ADA and people with disabilities, specifically, but I think the more decisions that we get that are favorable, regardless of who’s in power — it’s the decisions that guide the courts.
Courts will be hard pressed to turn away from strong reasoning and strong decision-making, but also it doesn’t make sense economically to keep institutionalizing people with disabilities. It just makes no sense. There’s so much research that people are better served in their own communities. It doesn’t make good public policy, and it is not economically sound and it violates civil rights. The rational way to proceed is where the research is, where the data is, which is to serve people in integrated settings.
I’d like to sit down with the district and see that they are really implementing these reforms that the court has ordered them to implement. And I’m happy to help them in any way that I can, but the district really has to be the one to make the difference.