This is being provided in a rough-draft format. Communication Access Realtime Translation (CART) is provided in order to facilitate communication accessibility and may not be a totally verbatim record of the proceedings.
KELLY BAGBY: Hello everyone. Why don't we start with introducing ourselves.
DAVE SALMAN: My name is Dave Salman.
SONJA PETERSON: I'm Sonja Peterson, legal staff attorney with the Minnesota Disability Law Center. This is my first time, and I've just been wowed by the presentations. Very quality information that's going to be very helpful.
SPEAKER: Hi, I'm Jennifer. I am an attorney in private practice in Chicago, Illinois, and we're your co-counsel. My partner and I just moved there a couple of months ago. But yeah, so we just joined a great civil rights practice and brought our disability rights practice. So we're excited.
SPEAKER: I'm Kate Lang.
SPEAKER: Hi, I'm Shira. I work on housing compliance in D.C.
KELLY BAGBY: Excellent.
SPEAKER: I'm Abbey on the civil rights and education team.
KELLY BAGBY: Thanks for coming.
SPEAKER: Hi, I'm Nancy, a litigation fellow with the AARP Foundation.
SPEAKER: Hi, I'm Beth, a trial attorney at the Department of Justice Civil Rights Division.
SPEAKER: And I'm Julia Graph, also trial attorney in the Civil Rights Division disability rights section.
SPEAKER: Jennifer Robbins also with the same team at the Department of Justice.
KELLY BAGBY: Thank you so much. We're just going around to introduce ourselves and where we're coming from.
SPEAKER: I'll start. I am a second year law student with American University, and I am part of their disability law clinic and I'm also here in my capacity as an intern for Quality Trust.
SPEAKER: Hi, I'm Amy Young, a paralegal at the Justice civil rights disability rights section.
SPEAKER: I'm a parallel there as well.
KELLY BAGBY: Wonderful. Great. Well, thank you guys for coming and we'll let these guys get settled in.
LISA BOTHWELL: Hi, good afternoon, I'm Lisa Bothwell. I am working with HHS in community living.
KELLY BAGBY: Wonderful. Thank you. Would you mind introducing yourself to the group?
SPEAKER: I'm Kelly Israel, a policy analyst. I'm glad to join you all here today.
KELLY BAGBY: Thank you so much. I'm Kelly Bagby. I'm an attorney at AARP Foundation. We do a lot of litigation. We're going to talk about Olmstead but also around elder justice and abuse issues as well as a host of different age discrimination and other kinds of discrimination, housing discrimination, a host of different areas that sort of overlap with Olmstead.
MAAME GYAMFI: Hi, my name is Maame Gyamfi, I work with Kelly Bagby at AARP Foundation. And we are absolutely thrilled to be here.
KELLY BAGBY: So we're going to have a wide ranging and diverse sort of background here. We're going to explain for some of you people who do Olmstead litigation all the time, this may be basic. But we wanted to make sure everybody understands the broader parameters of what it even means to have Olmstead litigation.
These are our overall goals. We're going to discuss the relationship between aging, disability, and institutionalization. So how does this all fit together. We're going to talk about how Olmstead, the Supreme Court's decision in Olmstead, created a legal imperative to stop institutionalizing people with disabilities. Not just a suggestion; it's a mandate. The third goal is to explain how Olmstead and the Americans with Disabilities Act help people to leave nursing facilities in particular, but it's the same law applied to any institutional setting. And how we are also using the Olmstead decision, ADA, and Section 504 to also stop people from being placed into institutions when it's unnecessary to do so because they meet the standard. They want to be in the community. They meet the criteria for being in the community. And it's reasonable to place them into the community.
And then the final goal of our talk is to really increase collaboration with other, amongst other, and with other, disability advocates so that we're no longer leaving people with disabilities in institutions. It's just unacceptable, and we have sort of gone through this long evolution across, you know, since 1999 when the Supreme Court issued its decision, to sort of focus on different populations at a time, and one of the groups that got left behind until the last 10-12 years was older people. And so that's why we've really focused with laser-like attention on making sure that nobody is left in institutions, children, older people, nobody with other kinds of cognitive impairments. So we are very focused on making sure that Olmstead is used to its fullest capacity.
MAAME GYAMFI: Now, I would say that one of my secret goals is for everyone here to leave empowered and excited to actually do this kind of work and include older adults when you do this kind of work. So that's my kind of world domination goal here. So let's see what I can do about that.
First of all, everyone should know, let's kind of talk about the landscape and why it's important for people who are advocates to really get involved in this area. We are in a time of increase in older adults in the population. In 2034, for the first time ever, there will be more adults than children under the age of 18 for the first time starting in 2030. So remember, 2030, when all the boomers will be older than 65, older Americans will make up 21% ever the population, up from 15% today. And by 2060, nearly 1 in 4 Americans will be 65 and older. The people aged 85 plus will triple. And the country will add a half a million centenarians.
I mean, one of the things I think is really important to embrace and celebrate, you know, is the fact that people are really living longer. My dad always says AARP comes out with these statistics that say hey, a child born today has a 50% chance of living to be 100. Like you guys talk about life span but you also should be talking about health span. And part of the reason is because there's so much discrimination against older adults when it comes to health, when it comes to other things, that the actual disparities and social determinants make it so that when people are living longer, other difficulties are coming in. One of the things that the prevalence of disability increases with age. People with at least one disability is 41% of adults aged 65-79, and 71% of adults aged 80 and older.
MAAME GYAMFI: I used to be an actress so we're doing the superior projection exercise. One of the things that we have to be clear is that negative views of older adults persist. I know you all remember, remember at the beginning of the pandemic, when people were saying oh, older adults would be happy to die for their grandchildren, or when they actually had this healthcare rationing discussions, when they were talking about who would be more valuable to provide services to, right, and it was older adults and people with disabilities were put on the other end. And in fact there was the Office of Civil Rights complaints done by Justice and Aging and other folks to try and like stop that at the path, right, but people started accepting that and thinking that was okay.
You know, what are some of the views? That older adults are a burden on society. They're worthless. Next that they're slow, weak, frail, feeble. And that all equals bad. You know, that they have cognitive decline. These beliefs persist, and then go into every single aspect of people's lives. And so then what people say is, oh, what really needs to happen is that older adults should really be in a nursing facility. They're going to get three meals and a cot. They're going to have 24-hour care! It's the best place for them! Plus everybody else can then go on and live their lives.
This is a very dangerous way of thinking. You should also be aware as advocates in this area, it's also something that the judges and the courts think as well. Sometimes you're combating the fact that the person on the bench might have put a loved one in a facility so they don't want to hear about how nursing facilities aren't the best places on earth, or something really basic, that a person can and wants to live in the community and there are systems in place for them to be in the community. That's something that some of these courts, part of the work that we do when you're in court is educating the court on the realities.
Consistently when they do surveys, and I mean over the past 20 plus years, nearly 90% of people age 50-80 say it's important for them to remain in their homes as they grow older. Older adults do not have to be institutionalized. First, older adults do not want to be institutionalized. Second, older adults do not have to be institutionalized to receive assistance with activities of daily living. And third, there are cost-effective systems in place to keep them from being institutionalized. So I really hope you guys can get the message that older adults equals institutionalization or nursing facility or it's the best thing for them is simply not true.
KELLY BAGBY: This is where we move back into Olmstead and how older adults fit into the decision as well as the justification for the passage of the ADA, the Americans with Disabilities Act, Section 504. So one of the key factors about why the ADA was passed was because there's so much, as you've heard in this conference, it persists today. There is endemic discrimination based on disability. And you add on top of that, there is endemic discrimination based on age and age discrimination, and you combine those two and it becomes a very big problem.
But the ADA is not just a suggestion of you must not do this. The ADA includes mandatory requirements. The ADA is a remedial statute. Whenever you think about what is a remedial statute, you think about it's set to remedy a past harm. Remedial statutes exist because the wrong that they're trying to correct is so pervasive that we have to have a statute that demands corrective action, affirmative corrective action. It's not just thou shall not do the following things. There is a mandate within the ADA that says that any governmental entity, a state, a county, a hospital run by a county, must administer services, programs, activities in the most integrated setting appropriate to the needs of the qualified individuals with disabilities.
So integrated setting is then defined by our friends at the Department of Justice to mean that it is a setting that enables individuals with disabilities to interact with people who don't have disabilities. So that is not an institution. You can't be in an institution and interact other than the staff, which they don't really count. You have to be interacting with people where can you have a fulsome life, you can be interacting with people, living where you select to live, not where because you're a person with a disability you're going to be put in a certain block or building. Integration means that you have dignified choices and you're allowed to decide how to live. But it's not enough that states don't impede that. States have to enable you to do that. And states and local governments need to clear the barriers that are stopping you from being able to do it.
And this becomes a huge thing with housing. If you say there's loads of housing out there but it's not enough for a state to say here's a list of all the housing where disabled people can live. You have to actually enable them to make applications to that housing, understand that the housing exists, help them to pair up, where do you want to be in your, you know, what place do you want to be around your family and supports, and then enable that housing decision making to happen. But it requires that states affirmatively act. So the beautiful part, my favorite part about the best Olmstead decisions, and not all of the Olmstead decisions are this beautiful, but the best decisions around Olmstead talk about how it's just on its face discrimination if you leave a person in an institutional setting.
Because if they don't want to be there, and they don't need to be there, you cannot leave them there. And this is the piece of the litigation puzzle that has really not coalesced well. And I think we need as advocates to be hammering this and saying that it's not if you unintentionally leave people with disabilities in institutions, you're still violating the ADA. There's no animus. You don't have to hate people with disabilities. We don't have to show that. We just have to show that you even inadvertently are leaving them in an institutional setting when it's not necessary. That is enough to satisfy Title II of the ADA.
And I think that that is a place where we've really tried to hammer away at the cases. This again becomes a problem because judges are a problem and judges are often like, they didn't mean to do this, there is no policy that says we will institutionalize all people with disabilities. There doesn't need to be. If we can prove there's a policy that says we will not enable people with disabilities to move from institutions to the community, that should suffice. You have to be very careful about arguments like that, but I think ultimately in order to effectuate the goal of the ADA, what we need to be able to prove is it's an affirmative obligation to remove the barriers. And the barriers are, I don't know that options exist in the community. That's a barrier that needs to be removed. If the barrier is, I didn't realize there was housing that would take people who are wheelchair riders. That's a barrier that needs to be removed with information. If the barrier is, I don't know how to apply for services, I'm in a nursing home, there's no internet service here, that's the barrier that needs to be removed. Whatever the barrier is resulting in people being stuck in institutions, that has to be removed by the state.
And so it requires when you're building these cases a lot of forethought. If you're doing cases like this, you need to pick the barriers at a high enough level that the same barrier will exist a year from now. You know, these cases can sometimes be seen as Whac-A-Mole. You'll pick something, they fix at the next year, and you're like, well, shoot, that was like my whole case. So you need to figure out how do you get above that one particular thing that can be easily fixed. The ADA is a remedial statute. You need to remember that. If it's remedial, it's not enough that you passively say I think I'm in compliance. You have to affirmatively ensure that you are in compliance.
This is what the Olmstead decision actually required. The Supreme Court's decision in Olmstead doesn't read as well as I would like, quite frankly. But the progeny, the cases that have come after, have really helped to define what the Supreme Court either meant or should have meant in what it said. But these are the key elements of what is very clear in the Supreme Court's decision. That a government entity has to comply with the integration mandate and actually affirmatively move people from segregated settings like nursing homes or other places to integrated settings where they can interact with people who don't have disabilities, when three things occur: Community is appropriate; the individuals don't oppose, that's the language the Supreme Court uses, so weird, like oh, do you hate the community?
If they don't oppose. You don't have to say every day, I would like to leave, I would like to leave. If you just don't oppose it, you're allowed to leave. And third, return to the community can be reasonably accommodated. So you can drive a train through every one of these elements, as you can see, and that's why there's so much litigation on this. The easy one is, well, the two easy ones I think are the first two. Community placement is appropriate. It can be any medical professional. Doesn't have to be the state's medical professional or institution's medical professional. Any person can decide that community placement is appropriate. In our cases, we often try to find statutes where the elements we're trying to access, the community services we're trying to access, have also nursing home level of care as the criteria. So then it's like, if you are eligible for nursing homes, you're also eligible for this so that gets us partially over that hump. You still need experts to weigh in.
The second one is the individuals don't oppose. That's really something for like later in the case arguably. Because I might oppose today. But tomorrow I would love to go. And then the next day I might be a little bit afraid. But oppose doesn't mean like I'm dying to leave today; it just means generally speaking, I'm not opposed to moving to the community. I quite frankly have never met a client that when I explain to them what it means, they oppose. Never. But of course if you say, hey, would you like to go buy my car, it's in the garage, and you might hear oh, hell no because I don't know what that means. But you have to tell people what are you talking about. What is community placement? How would I live? How would I pay my rent? Who would provide me services? So you have to explain the second piece.
The piece that is most hotly contested is whether or not return to the community can be reasonably accommodated. What is reasonable? What is accommodated? There is a ton of litigation about this. And if you go to the next slide, we can talk a tiny bit more about this.
This third piece, the reasonably accommodated piece, fits right into whether or not something is a defense that the state might have.
And I think that we as advocates have let ourselves be bamboozled by that third element and we have now tried one of our cases in D.C., we've managed to get the court to agree with us, that we were bamboozled, that everybody was. Because what the ADA says is that a state can only, can only avoid helping somebody with a disability move to a more integrated setting if the state, not us, the state, can prove that they can't possibly serve these people in integrated settings. If they can't do it because it would just be like, they would have to change the very nature of the programs they are serving. If you have a home- and community-based waiver, how do you change the very nature of it to serve more people with disabilities? To change the very nature of that, which a lot of advocates leave out the "nature" piece of that regulation in the statute, but it's explicit that the fundamental alteration standard is it must fundamentally change the nature of the program.
And we all say, any government is going to tell you, God, we're going to have to spend more money.
That will be a majoring change. We might have to move some of these services from here to here, that will be a change. That will fundamentally change. That's not the standard. The standard is that it must fundamentally alter the very nature of the services the state is providing. I think what we have to do, which we'll talk about in the Brown litigation and the D.C. circuit, God bless them, gave us some instruction on this. But there are very few cases that have actually gotten a decision on this point. Very, very few. And they're mostly decisions that like the motion to dismiss level or occasionally summary judgment standard. But the cases, I mean, believe me, I have scoured every possible place to find these cases. There just aren't that many. So the Brown case is one. It's in the D.C. circuit. It's only binding in D.C., but it's really instructive, I think, that the D.C. circuit has told us that that's the district's burden in our case. The court shifted everything to the District of Columbia to say, you got to prove this. You can't just say it's going to be hard, it will be costly, or difficult. You know, we might not be able to build this bridge over here. You have to actually prove it. And that is I think a really important thing to keep in mind, because this is, don't be bamboozled by the fundamental alteration defense. It is something that is a high burden for a state to satisfy.
This is the actual language. I was trying to show off that I could roll one of these up. Of course this fits into what I just said 5 minutes ago so would have made more sense if we had rolled it before. All right. So I wanted to also just go through some of the cases that we've been involved in. Our cases have something to do with Justice and Aging. I think all of them with the protection and advocacy programs around the country. We have also brought cases with legal services organizations around the country. With other national organizations like the Bazelon Center and Center for Public Representation. You know, there have been cases where we've had the Department of Justice weigh in in our cases. But they're all hard. All these cases are hard. And we offer our assistance to you if you're inclined to try to bring one. It requires a lot of planning and thinking, and we'll talk a little bit more about some of the ways that we did that. But in some of the cases, we started planning them and we're like, oh, shoot, we're completely wrong, this is not actually the problem.
We felt the problem was this but it's not. So we had to scrap 10 months of work and reconfigure what we actually -- because you need to pick the right thing to fix. If you pick the wrong thing to fix, even if you're successful, you're not actually helping your clients. You need to figure out what is the precise thing that is stopping people from getting to the community. And again, it has to be at a high enough level of generality unless you're lucky enough to have Department of Justice in our case. For those of us who have to do it as a class action, we need it to be at a pretty high level so we can pull a whole class together around this. So of these cases, many of them are what are called at-risk cases. People who are in the community but they're at risk of being institutionalized. Many of them, Florida, D.C., and California, and Kansas, actually, are cases that involve getting people out of institutional settings and into the community. Both are difficult. But both have different challenges associated with them.
We love Department of Justice guidance and we cite it much more often than they do. But we just hand selected the ones that seem to be helpful to us most of the time. But some of the key things that are really important, and we've touched on these, that states have to do outreach and education so that people understand they even have rights. Our clients never understood, and we've been litigating our case in D.C. for 11 years. We go in and talk to people and they're like, what do you mean we can live in the community. Like nobody knows that they have this right. So part of the obligation is it's great when the P&As can go in and tell them that, but it's the state's obligation to tell people.
We're not going to get deep into the Olmstead plans, but one of the things that the Supreme Court talked about is, if a state can say we have this plan to how we're going to integrate people, and all people with disabilities, we have a plan for how we're going to move them eventually to the community, those are called Olmstead plans. Every one of your states has, or should have, an Olmstead plan. There are very specific requirements about what should be in an Olmstead plan. But one of the most important things is an Olmstead plan needs to show a real commitment to how you're going to move people from institutions to the community. And you have to show you've demonstrated some success in your plan. Even a modicum of success. You have to show some success. If they're just saying like we have a plan, next year, we expect we're going to move like 150 people, that plan is not going to be sufficient. You have to show that you've demonstrably started making a difference for people, to move them into more integrated settings.
And this one is obviously critically important, the fourth point, for any at-risk case. This is not explicit in the ADA. And it's not explicit in 504, that states must not administer their programs in a way that places people at risk of being institutionalized but of course it makes sense. There are great cases that have said why should somebody have to institutionalize themselves just to get back out of an institution, that's stupid. And seems to, plus, as difficult as it is to get out of an institution, we know once you go in, it's really, really hard to find your way back out. So this is a piece that is critically important to keep in your mind, that you want to make sure you've got really good case law. And if you ever did bring this kind of a case, and we'll explain one of our cases that as an at-risk class, you need to be sure you're laying it out so the court is very comfortable, this is not some weird bunch of advocates thing, this is like normal stuff judges have found to be very, very normal, to not make people get institutionalized so they can be deinstitutionalized.
MAAME GYAMFI: So as Kelly mentioned, over the years we've brought several of these Olmstead cases, and we thought one thing that would be really useful today is to actually talk about two specific examples. Because we think that in that way we can more tell what we're talking about and what people should be looking at and considering while they're doing these cases. We're going to have two different examples. One example are people who are institutionalized in nursing facilities. And I just have to say, when I first came to the AARP Foundation, this area was all new to me so I didn't even understand that a nursing facility was an institution. So when I say that, again, we got to make sure in terms of the public education, don't assume that people understand that nursing facility is an institution.
Like everything you're doing, we're starting at ground zero. Don't assume that people understand that people who are in nursing facilities may want to be in the community. All of that stuff, people don't understand any of that. It's part of our role, again, to educate other people on that. Things to keep in mind when selecting cases, Kelly talked about earlier, be able to identify the problem in concrete terms. We're talking about classes, we're also talking about cases that you file today, and one of the things that these public entities do is after you file, they start making improvements, right? That's okay. It's okay and there's specific case law and contact us. Specific case law about just because you start making improvements after the case was filed against you doesn't mean you weren't in violation. But be aware that that happens. But overall, if you pick the right issue, you'll find that the thing is still continuing.
You also want to define the problem in concrete terms because you want to be able when it comes to injunctive relief, and we are all in the business of having social change for a wide group of people, so you want to be able to say what injunctive relief you're going to actually want. One of the first things defendants want to say is oh, we can't understand what they want from us. And the courts are so used to seeing horrible things that the courts will tell you, I'm not here to rule on incompetence. So it's not shocking to them that something is going wrong, right, and they're like, this is just mismanagement, we're not here to rule on mismanagement. So you have to really be able to concretely say what the problem is and what the solution is.
We're going to talk about identifying and selecting named plaintiffs. It's really important. These people are heroes. We'll talk about that. They are going to be deposed. Everything about them is going to be brought up. Anything that ever happened to them is going to be brought up. You know, going to the court and saying, hey, this person is basically going right now through certain medical condition that results in them not being able to do this and this and this. We have to be prepared and also protect our named plaintiffs at the same time, recognizing that they are heroes. Because a lot of times our cases, we have a lot of people who are older adults, I have to say, one of the things again that was new to me was my plaintiffs passing away. I used to tell Kelly, this is a depressing practice area. But that's just real. So you have to have people in the background who you're ready to look at. Selecting and working with experts. How do you find an expert that's going to be able to explain to the court everything that we're talking about?
And again, a lot of times the public entities have a whole slew of people who they've lined up, paid well, established business relationships with to speak on the other side. So again, selecting and working with experts. Combating biases against people with disabilities, older adults, and about the incompetent government. And I'm limited as a court in what I can actually do to find a solution. So the first case that we're going to talk about is Brown versus D.C. This is a case brought in 2010 that our office brought along with the D.C.'s P&A as well as a law firm on behalf of Ivy Brown, sitting there on the left, in the chair, and then Larry McDonald, the picture on the right. He's also sitting in a chair. And a class of people who are institutionalized in nursing facilities in Washington, D.C..
The case came, I believe actually to Kelly's attention because she had gone into a nursing facility and there were all these people who didn't necessarily seem like they were getting services, which is not uncommon, but who had just been there for a long time. They might have gone in because maybe they fell down and broke their hip. And suddenly, let me say, 10 years, 15 years later, they're still there. The longer you're in a nursing facility, the less you have connection with people on the outside. If you had an apartment, you've now lost your apartment. Whole family members have passed away. And then I always want to bring up people who don't have families. A lot of times we talk about people with family and friends. Well, one thing to be aware when I talked earlier about the whole older adults living longer, another slide I should add in for the future is the number of people who are isolated, on their own, living on their own. That's also something that's increasing. So they don't have outside connections as well. But again, regardless of that, they should not be institutionalized in a facility.
Ivy had been there for 9 years. Larry had been in his nursing facility for 15 years. This was a very hard fought case. Our class is alleging that D.C. is violating their civil rights under the ADA and Section 504 by causing them to be unnecessarily segregated in nursing facilities instead of providing them with the transition assistance they need to move back into the community. So we have two things here. On one hand, folks who are in nursing facilities and institutions. D.C. is actually a place that has excellent home- and community-based services. The problem was, what Kelly talked about before, getting a concrete issue. There was no bridge to provide them with transition services to get the people from the institution to the community.
In addition, appreciate that. Kelly has been in the disability community for a long time. Everything to me is like, Oh! Ooh, this is terrible! I wasn't aware that the people didn't even know that they could be in the community. You see what I'm saying? So one of the things when you're talking about injunctive relief, outreach and education is number one. People need to know their rights. It needs to be told to them in a non-scary matter. Oh, you want to be in the community tomorrow? They don't tell that you you have services and things that you can get. So anyways, just making sure the education is fulsome. I hate that word, but you know, the proper, fulsome education that includes things where they can actually imagine how they might be in the community.
KELLY BAGBY: One of the things that came up in our trial that we just had was that we were advocating that fulsome outreach means somebody is sitting with you and explaining to you one on one, not handing you a pamphlet. And like the District is like, we have all these pamphlets! They have pictures in them! And it's like, okay, that's helpful, because nobody understands what you're talking about.
I resisted that for years. But the more that I spent time with my clients, the more I realized, they really need somebody sitting with them one on one. Like it's not enough to say, it's not even enough, like the P&A in this case, they would go in, I would go with them, we would give these big talks to rooms of 30 people. And the District was saying, well, you're the one doing the outreach, obviously you suck because your outreach isn't good enough, they're not understanding.
And we're like, okay, this is actually not good enough because people want something to do, first of all, so you're saying oh, somebody is coming to the facility, you get free snacks, like sure, we'll go. But that's the end of it. Really it was only when we would sit with them one on one and say, what do you want for yourself? If you lived in the community, what would you like to do? Shopping, church. Ivy said, I just want to ride in my wheelchair down a tree-lined street. That's like the most breathtaking independent, dignified thing that somebody can say. It's not difficult. But it's like she can't do that. So I think that part of it is just engaging people and saying what is it you actually want for your life outside of this place.
MAAME GYAMFI: And just so one thing when Kelly mentioned Ivy's testimony. She's been there for over 9 years. She is in a bed. One of the things she testified to, is he shed she wanted to leave the nursing facility since the day that she stepped into it. We said why? She said, I want to live in the community because it's home. I won't feel caged. I don't know how many people ever experienced living in a nursing home, but it's very confining. I feel very confined and very actually jailed. A lot of times I can't sleep. I end up sitting up the whole night because I'm not comfortable in that environment. I miss so many things. I would like to be able to ride down the street, even if it's in my wheelchair, and just enjoy the neighborhood. I miss being able to commune with my neighbors, just being free enough that if I want to sit on the porch, I can. And again, one of the things she emphasized was that most of her time was spent just looking out this one window.
KELLY BAGBY: And window isn't nearly as nice a view as that.
MAAME GYAMFI: The judge in her decision, we did not win. The judge in her decision, the one very helpful thing the judge did, the judge said, D.C. has nothing to be proud of. And then the rest of the decision, which was like 146-page decision, very detailed, why she disagreed with us, of course we appealed the case to the D.C. circuit. And the D.C. circuit remanded the case for a new trial.
And among the things that they said was, they said, hey, listen, these plaintiffs have actually proven that they are being discriminated against by being forced to remain in a nursing facility when they want to and can live in the community. And the court then shifted the burden to D.C. to prove why it should not be ordered to serve the people in the community as opposed to in a nursing facility. So then we had a second trial in 2021, and we're still waiting for that decision.
The one thing I just want to also add about this case, so notice I said earlier this case started in 2010. You do realize we're in 2023, right? Is this one I think is an especially long case, but partly too, which I had to do the short version, we've gone up to the D.C. circuit two times, once on the class certification. So don't be surprised if it needs to be appealed. Because we got the remanded case is also too why it's been a long time. While the case has been going on, D.C. has made various improvements. So as I said before, just always appreciate that will be part of it. And so for me, one of the ways, I say this all the time, the winning is in the fight of these cases. When you file your complaint and you start doing your thing and you start getting changes, right, remember, we're in the change business. The moment we hear they have a change, keep on fighting, you won, small victories all the time. We're winning, we're winning.
KELLY BAGBY: Thankfully, though, in the second trial, which started in 2021, D.C. just fell completely to pieces. We were like, thank You, God, finally a break! All of the things they said they did properly in 2016 they just let unravel because they never thought we would win in the D.C. circuit. So like everything they had started building they just let fall apart completely.
So we had a lot of good cases that we could, a lot of good facts that we could put on. We'll see if the judge thinks they're as good.
Just a little background, the woman from the Quality Trust, the first judge we had was the judge who created the Quality trust, and I was part of that and she was like, oh, hell no, I don't want you in my court and another case that goes on 40 years. She's like, I don't like these institutional reform cases.
So now in our case in New Hampshire, we have I think a lovely judge and we'll see what he decides on our class certification motion we just filed. But we have a judge who actually is really an advocate. You know, he's a begrudging advocate because I wouldn't have picked him as an advocate, but we started this case in January of 2021, brought it as a class action. This is on behalf of a people in this at-risk class, people living in the community in New Hampshire on the waiver, the choices for independence waiver, it's called the CFI waiver. CMS calls the CFI care waiver because there's so little oversight over this waiver. They just don't do any of the things they say they're going to do in the state. And so the waiver itself says that if you're a nursing home level of care, you can get all the services you would normally get in a nursing home in the community, and we can keep you happy and safe and you'll get all these hours of home care and a host of other services to keep you safe.
So we used some of the same experts from the Brown litigation and used a deep dive using a lot of Medicaid claims data. I mean, many, many, many, long months of analysis of the claims data, to show that people were authorized for a bucket of services and they were getting a fraction of those services. So the state is saying, you have to have so many services to live here in the community, and we know that you need this and we agree you need this and we're going to validate it three different ways that you need this. And we aren't going to pay any attention of actually getting it or not. And part of the reason why is that New Hampshire has delegated all of the actual litigation to private entities and they do very little oversight. But you cannot delegate away your responsibilities under the ADA. You're still the governmental entity. I don't care if you get managed care in there, you hire your cousin, it doesn't matter. It's you holding the bag to make sure that you're in compliance with the ADA.
And so I mean the state in the first motion to dismiss in this case, they doubled down like 14 times in their motion to dismiss, they're like, we're powerless! These are case managers running this, we don't know what they're doing. We're like, that's a crazy argument. And the court agreed. So then we moved forward from that, and the court wrote us a great motion to dismiss decision, and then we proceeded for a year and a half with class certification. Part of the problem has been that they have withheld documents from us. I'll deny that I said that, but it was a problem. Like we removed for class cert and we really didn't have a lot of documents but we had all this data analysis that we had done through our experts so we felt we could show the systemic problem. And now we've now gotten all the documents but we've already argued the class certification. So the documents are great for the rest of the case once the court certifies.
The other piece of this case, and this is a difficult question for the lawyers in the room, but sometimes in these cases you bring Medicaid claim as long with the ADA and Section 504 cases and sometimes you bring due process, constitutional due process claims, because if you deprive somebody of their Medicaid rights, they have a due process right to fight against that. And that is a very cumbersome process. And states don't have the capacity. If everybody who got denied a Medicaid claim actually exercised their due process rights, the whole system would collapse. There's no conceivable way states could possibly fight that. And this was actually the case we had in California with Justice and Aging, the legal director was super smart about this and realized all we have to do is make them have to do due process for everybody that says I want the service. And the state, that's what drove the state to the table because we were like, holy crap, there's no way, that's thousands of due process. So that's what drove them to settle with us because that alone, not that they were wrong on everything else, that alone was the thing that drove them to the settlement table.
In the Fitzmorris claim, we have a Medicaid reasonable promptness claim, but in this case, under Medicaid, a state says you're entitled to a service, they're supposed to provide it to you within a reasonable period of time. In this case, they weren't even telling people you weren't getting it. Like they would say, you're going to get 30 hours of home care and 7 hours of nursing care each week. And then people, they just didn't get the providers. So nobody is ever saying no, you're not getting this. So people just don't show up. And people are laying in their own waste for days. They're not drinking water because they're fearful that no one will come and help them toilet. So they're getting dehydrated and then deteriorating because of that. But they're never getting an official notice like you're not going to get these services. People just don't show up for days and days and days.
One of our main plaintiffs did not get the amount of services she was supposed to for like 4 months and she's a quadriplegic. Like I literally don't know how she stayed alive. She would beg her neighbors and anybody and everybody, and they could pop in and she would just hold it together long enough, but that's not a system. And you're a Medicaid recipient. You're not supposed to have to depend on the kindness of strangers. You've actually been told this is an entitlement that you have. You should not have to beg people to come help you get out of bed so you're no longer sitting in soiled sheets. So, and again, the point of HCBS is to help people live independently with assistance. And I would always say with dignity. It's not dignified to have to beg people and ask for your mother to not go to work for weeks on end so that you can get out of bed and get food. Like she'll lose her job. These are the decisions that people make. Like literally, family members are getting fired from jobs because this waiver is not working as it's supposed to, would.
This is where all Olmstead litigation converges: Workforce. Workforce, workforce, workforce. This is not just Olmstead litigation. This is nursing home cases, long-term care, this is everywhere. Every defendant with half a brain is saying, what are we to do? We have no workers, nobody to do these jobs. This is the beautiful part of the ADA specifically. There's a part called the methods of administration. A state cannot administer its programs and services in a manner that leaves people to be at risk of being discriminated, in this case institutionalized, unnecessarily. So you cannot run your Medicaid program by sticking your head in the sand like, these people might or might not have workers. I don't really know. We are trusting them to get the workers. I don't think they have them. But I don't know what's going to happen.
In our New Hampshire case, one of the things that we brought to ACL's attention, because it just does my head in, the state keeps reporting our clients to adult protective services, saying that our clients are self-neglecting. How in the world can they be self-neglecting when it's their service provider that is not showing up? So then when they'll do an investigation, oh, you're not self-neglecting, but then they close the case but don't do anything to secure the necessary services to keep the person safe. And this to me is like flipping all of the protections in the waivers on their heads. And this goes to what Maame was saying about your plaintiffs being heroes. They become demonized in this process. For one of our clients it was too much stress and she had to pull out of the case. But for the other ones, they're just so determined and stubborn and they've survived this long. By some miracle.
It really, we need as advocates to make sure that we are debunking that particular myth, that there's nothing you can do about workforce. With that in mind, I've started interviewing every and anybody that has a slightest bit of information about how do you develop the good workforce for healthcare, and I don't care if it's hospital, whatever, because if you can develop a workforce for people with traumatic brain injuries, you can develop a workforce for HCBS waiver providers for older people and people with disabilities. But it's this new Whac-A-Mole thing. Like what are we going to do? We're powerless. And I think we have to -- and this fits right into the fundamental alteration discussion we were having earlier because this is what they're going to say. We can't do this because we don't have workers and we don't have workers, and in order to get the workers, we're going to have to raise the rates and that would have to alter our programs and what we have to be able to do is say, you have agreed to be a home- and community-based waiver provider. You've accepted CMS's like anointed waiver.
You need to implement it in a way that ensures that people have service providers. Like it's not that big of a lift really. But I think that the pandemic, they weaponized workforce development as a post pandemic tool against advocates and I think we have to figure out how do we dismantle that because that's going to be the next big hurdle of expenses and things we can't manage. So I know we have literally one minute. But there's our contact information. I want you to feel free to reach out to Maame and I. And if people have questions, we can remain here for a little while. But I don't want to hold people up.
Do people have questions?
Question and Answer Section
SPEAKER: I should check in first because I was out of this presentation at another one. Did you already talk about the housing piece?
KELLY BAGBY: Not really, no.
SPEAKER: Because I remember hearing a presentation you gave many years ago about states throwing up their hands about housing. We have no control over it! This is out of our hands! And I was just wondering if you could talk about how you're confronting that.
KELLY BAGBY: Beautifully, the defendants in D.C. suddenly had all the housing in the world. So we were like, well, that's no longer a problem for us. But in the first trial, it was a huge problem because the district was saying, you know, these people can't get housing, with no evidence, they all have criminal backgrounds, they've all got this or that, they're all drug addicts. Like where is the list of people with drug addictions or with criminal backgrounds? I want to see an actual name. So I can remember one person at least like okay, here's one. But the judge bought it. And put it all into the decision. Like oh, yeah, drug addicts, definitely don't want them in the community. But the next time we got to trial, we were ready. We had stuff lined up. But by the time we got to trial, the District was like, none of that stuff say problem anymore. We've nailed that down. Housing? We could get everybody housing. We have vouchers, we're good at this now. We just don't think your clients actually want to move to the community. That was their new thing.
They were wildly misusing the minimum data set. When you're in a nursing home, someone asks you, do you want to learn more about being in the community? And in order to be paid, you have to ask these questions. Something like 80% of the people in our class said, yes, I would like more information. And of that 80%, something like 5% actually got more information. Like what happened with the other 75%? You never even tried to reach them. And they conceded, yeah, we never tried. Like okay, that seems to be a problem. And this goes again to the Olmstead plan. Right before trial, they released a new -- when I say 3 weeks before trial, they came out with a new Olmstead plan saying this is the new plan! Yea! But the new plan, they very stupidly said that MDS will be the whole thing. It's everything will be guided by the MDS process. We were like, wow, well, that's pretty stinky if 75% are falling out of the MDS process. So it was sort of a gift. We hope the judge sees it that way. But they just misplayed all of the things that had, all their strengths from the first trial they squandered and created new problems on the eve of the trial.
MAAME GYAMFI: And that reminded me. Again, as a practice tip. Definitely contact us if you get involved in something like this. At one point, we had to agree that there would be a certain point where fact discovery would close, right, because if not, and the closer to trial, eve of trial, 2 weeks before trial, they start coming up with all this new stuff. So just a practice point in trying to make a cut so that you don't have problems later on. Again, some of the things the court might say, oh, we aren't going to bring it in. And you could say, you know, you have to be ready for their different tactics.
SPEAKER: Do you have solutions, have you had success, combating the sort of market won't support this argument, both in housing and in the actual provision of services?
KELLY BAGBY: Well, our argument with the housing has always been, get more housing vouchers. And within the District, we also, because our clients were so wildly discriminated against on every front, they got less than 1% of all of the housing vouchers that D.C. got, less than 1% went to people in nursing facilities. That's a decision. Like you chose to not give them housing. You have housing for all these other people. Our first judge was like, you want us to take housing away from others? Like no, but there should be an equitable distribution of housing vouchers for people with disabilities too. They are entitled too. And if you need to get more, get more.
So we had to look at these various, like how do we prove an inequity without making it seem like we're trying to take things from other vulnerable people, which was very difficult. I think that was very difficult.
The other thing we did, though, is we looked at housing much more expansively than just housing vouchers. We looked at every conceivable way that you could negotiate with landlords to try to get the new -- like D.C., there's constant construction. And somehow we found out that they were trying to negotiate with several of the richest landlords to give them the first floor of many buildings to have the people with disabilities be able to live in those first floor apartments. We're like, well how about you do that times like 300. Like don't do it with two. Do it with a whole bunch. But all we had to do in our mind was show it's possible. We don't have to show you where the units are. We have to show you that a jurisdiction could be creative and develop more housing.
And then the other thing that we relied on, the DAI settlement agreement in New York, they created this whole like, it was funded by the state, the state put forward funding, and we showed like a state that wants to fund housing can fund housing. It's a thing. You can actually decide that you want to have disabled people have housing, supported housing. And so we were showing, like from our perspective, we didn't want to say this is exactly how you have to solve it. We say, here's a host of ways that states solve these problems, and, judge, it's not unreasonable for you to order them. And give them the decision. Like hit them on the head and say, go solve this problem. We're not telling the state how to do it. They have the discretion to do it. But they need a court order.
MAAME GYAMFI: And one thing again, when they bring up housing, appreciate the bias you're combating, hey, they're already in nursing facilities, they have three meals and a cot, why should I create this whole system and whole housing thing when they're already in a place with meals and a bed. So again, just always remember, it goes back to, people's instinct is always what makes my life easier. And our instinct is, what is the right thing to do. And you always have to combat that.
KELLY BAGBY: Plus, ultimately, and I was only allowed to say this a couple of times but ultimately, nursing homes are not homeless shelters. You should not be warehousing people there because you don't want to develop housing for them. It's an institutional setting and violates their civil rights. So you have to figure out how to do both things. You have to fund housing.
The difficulty here for this population as opposed to people with intellectual disabilities or mental health needs is housing is grouped together with those populations. With this population, housing is separate and screwed up because older people need housing just like people with intellectual disabilities need housing: But at some point the decision was made to separate in those waivers housing from that piece of it. And so I think especially HUD in the last 10 years made it really clear to states, you have to do this too, you have to develop housing so that you can move people out of institutions.
SPEAKER: Quick follow-up question. Have you had problems with not having the right defendant in the case when the issue is housing? So if you sued the state health agency and they were not responsible for your situation.
KELLY BAGBY: Yes. In the District it was problematic because the housing authority is independent. Everybody told us when we lost, well, this is your own damn fault because you sued the wrong people. And at the time when we filed the suit, housing was not a problem. There was no waiting list for housing and we could get on public housing pretty easily. 8 years later, there's a huge housing crisis so that was part of the problem. But we thought about bringing in the housing authority as a defendant and we decided against it because we really believed what I just said, is that it's the state's obligation. If the state believes that housing is the real problem, that's just yet another barrier we have to clear. That's their programs and services are being administered in a way that's forcing people to be institutionalized, which is illegal. So it's a simple solution of maybe come up with an appropriation of a few million dollars in the District to house people. That's your solution.
But I think it requires us not to listen to the nonsense that comes out of defendants' mouths because that's really what is driving all of this is they say X and we go, no, it's X - 3! But really it's not X at all. It's Q. Like we're in the wrong zone. Like we need to really rechange, like change the conversation from the way that defendants try to tell us how the solution has to be. And that takes a lot of discipline. Really.
KELLY ISRAEL: So this case was filed in 2021, but the actual circumstances that led up to it, how did you contend with the arguments from the defendants that were probably related to the COVID-19 pandemic? I'm almost certain that that happened.
KELLY BAGBY: The case was actually brought in 2010 originally.
MAAME GYAMFI: She's talking about Fitzmorris.
KELLY BAGBY: This is part of our data analysis. We had a really comprehensive data analysis from 2017 all the way to 2021, and we showed there is literally no variation on the gaps between 2017 all the way through to 2021. That everyone was missing the same quantity of services. So it's not a COVID problem. Actually, people got more services during COVID, ironically, than they did pre-COVID.
KELLY ISRAEL: Go figure. Yeah, because I, like ASAN had a very significant problem where somebody was losing services during COVID and we knew about it. Cannot go into detail about that whatsoever, but I will say that really suggests just how bad the services were.
MAAME GYAMFI: Exactly.
KELLY BAGBY: Right. We were scared to death honestly. The first piece of Medicaid analysis we did was like, please tell us this is not a COVID problem. And then we were like, oh, thank God. This is consistent across 5 years of time.
KELLY ISRAEL: Yeah, dang, that is really good.
KELLY BAGBY: Or really bad.
KELLY ISRAEL: It's good for arguing that your clients have been deprived of rights.
KELLY BAGBY: I've never done this kind of detailed Medicaid data analysis, and it was a godsend. It was terribly expensive. And we didn't exactly know how to do it. And so that made it more expensive so we had to like have our expert run it, like no that's not right, and run it again, no, that's not right. Eventually, that to me is what sells it as a systemic problem. Anybody else?
SPEAKER: Are you at all concerned, the disparity impact regulations seem like they're on tenuous footing right now. And I guess are you concerned that the strategy that you're pursuing or that this whole area of law relies heavily on disparate impact and if those regulations fall, what's the next phase of Olmstead litigation or how should it be framed so that it's robust in the face of the skepticism?
KELLY BAGBY: You know, the way that we litigate cases, I'm not worried about that because we're not comparing -- we're just saying if you're creating a risk of people being institutionalized and we can show it's a tangible risk, I worry about every aspect of Olmstead litigation, frankly, which is why we're offering our services to anybody who wants to build a case because bad cases are bad for all of us. But there's a host of things to be worried about, not the least of which the Supreme Court, not the least of which if any of our cases end up in front of that Supreme Court, we're in big trouble, but I don't think that that's particularly going to be a problem.
But again, I didn't envision half the problems that we encountered in the course of the last 13 years litigating the D.C. case. And you just have to figure them out as they come up. The money-follows-the-person program sucking generally for everyone, I thought that was the panacea. But like no state is good at it. Nobody is good at using that money. And so every state is like, we're no worse than them, we're actually better. So like that's no good. So there's a host of difficulties, and I think part of what we have to do as advocates is come up with uniform answers to those things and be consistent with each other and not undermine each other at any turn on these cases.
KELLY ISRAEL: Finally found what I was actually going to say. So there was a reason, at least in the intellectual disability space, that housing and services are often separated out. Because when they're conflated with that population, what happens is that people with intellectual disabilities get provider-owned services, like the same person giving them services is the same person who owns the housing and the result is they have little control over their own lives. So that is why it was separated out for that population. And I'm wondering if the same concern exists elsewhere.
KELLY BAGBY: It's actually more fundamental to the way the waivers for the elderly are constructed. Residential care is just not a component of it. It's not a service available. So it's a service that's built in to the mental health Rehab Act piece and a service built in to how the waivers can work for people with intellectual disabilities. The residential services. But for people who are older, you can get some residential services, but now who knows. With the community rule going into place, who knows how it will play. But you can, for example, get some of these services provided in an assisted living setting, but it has to be of a certain kind. So it's just much harder for people who are older and disabled.
KELLY ISRAEL: Yeah, it sounds like it's complicated basically.
KELLY BAGBY: Very. Everything is complicated.
MAAME GYAMFI: And our job is to make it seem simple. Thank you, everybody.
KELLY BAGBY: Please call on us to help you make it simple.
MAAME GYAMFI: Thank you very much. And thank you for staying longer.
[Applause]