Jesse: This is Committable, a podcast about involuntary commitments. I'm Jesse Mangan and I'm here with Committable producer Jim McQuaid.
Jim: You've already announced me, so I don't need to say anything. So, Acknowledge.
Jesse: Alright, it's gonna be one of those episodes, which is totally fine because this episode we are doing things a bit different. Normally this season every episode we talk about mental health laws within one specific state. But for this episode we're going to take a slightly broader view and talk about some of the systems around those laws. Specifically, we are going to talk about Protection & Advocacy organizations and the federal laws that support them. And to learn more about those laws I spoke with Jason Parmer.
Jason Parmer: My name's Jason Parmer, I'm an attorney with Disability Rights West Virginia. Disability Rights West Virginia is a Protection & Advocacy agency, and we advocate for the rights of individuals with disabilities wherever they may reside. P&As monitor, investigate, and attempt to remedy adverse conditions in large, and small, public and private facilities that care for people with disabilities. So we go all over and monitor prisons, nursing facilities, psychiatric hospitals, talk to the patients there and talk to the staff and just try to determine what's going on and whether we need to advocate for anyone in particular.
Jesse: So we've talked a lot this season about how mental health laws vary from state to state, but one of the things that distinguishes Protection & Advocacy organizations is that they receive federal funding to advocate for people with disabilities within a specific state. So I asked Jason, what responsibilities come with that federal funding? How do P&As fulfill those federal obligations while navigating state systems?
Jason Parmer: What we do is, try to ensure that state operated facilities comply with both state and federal regulations. There are regulations that apply to psychiatric hospitals and nursing facilities, so we try to monitor those facilities to make sure that the patient's rights are being respected. There's a grievance process, for instance, so if a patient has a grievance with the way things are happening and they aren't able to sort it out informally, that they're able to go through channels to try to improve the conditions that they're in. But the P&As were initially designed to monitor state systems, and to ensure that they are operating as they should.
Jesse: So an example of a way in which a P&A organization could become involved with someone in a psychiatric facility might be, there would be a public defender or some sort of attorney assigned to defend the person, or represent the person, during the court hearing. But once the person is in a facility, if they have concerns about their rights, they could reach out to a P&A organization and ask that that organization come and talk with them, or come to the facility and talk with them.
Jason Parmer: Yes, and that's something we try to do. And I used to be a public defender, and I try to cultivate our ties with public defenders because technically patients are represented by public defenders sometimes when they're in the hospitals. But the system is unfamiliar to public defenders sometimes. So we are kind of a backup for the patients and the people in hospitals. And so we try to work together with the PDs to ensure that, you know, when someone's there, they're receiving treatment and they're progressing and not just stalled in the hospital with no prospect of getting out.
Jesse: What federal laws are you looking to when you go in to sort of monitor the standards of the facility to determine whether or not rights are being met?
Jason Parmer: I mean, the right to treatment itself is a constitutional right, established by Youngberg versus Romeo. It's that people have a due process right when you're institutionalized in a hospital to receive treatment. That's sometimes a problem for people with developmental disabilities who are in psychiatric hospitals because people with developmental disabilities do not require the same type of treatment. Often they need help with activities of daily living, and there's not really any kind of medication that will help a person with intellectual disabilities improve, it's just skill building. And that's something that is difficult to do in a psychiatric hospital setting. So when you have a person with intellectual disability who's committed to a hospital through the involuntary commitment system, It can not be a good situation sometimes, and some states actually don't allow people with intellectual disabilities to be committed to psychiatric hospitals because of that reason, they can't receive treatment the way that they should.
Jesse: So you mentioned the law, was it Youngberg versus uh…
Jason Parmer: it's Youngberg versus Romeo.
Jesse: Youngberg versus Romeo.
Jason Parmer: Yes.
Jesse: Can you talk a little bit about what this law established?
Jason Parmer: Okay, so Youngberg versus Romeo is a case decided in 1982 by the United States Supreme Court, and it's founded in due process, and freedom from bodily restraint. As a public defenderI've always found this case compelling. The rights implicated by involuntary commitment, you are being restrained, your liberty from bodily restraint is being restricted, and there's a quote from Youngberg that's, “Liberty from bodily restraint has always been recognized as the core of the liberty protected by the due process clause from arbitrary governmental action.This interest survives criminal conviction and incarceration. Similarly, it must also survive involuntary commitment.”
So,not only do you have a right to freedom from bodily restraint, but you have a right to treatment when you're in a facility to prevent you from being restrained while you're in the hospital. So, you know, while you're in a hospital, you're restrained, and you can also have mechanical restraints placed on you, where you're strapped into a chair. That used to happen more in the past, there are a lot of regulations that restrict physical restraints and chemical restraints with medication. The right that you have under Youngberg versus Romeo is a right to what they call training and habilitation to prevent you from having to be restrained and to try to help you live independently and be able to get outta the hospital.
In a nutshell, Youngberg establishes a right to treatment for people who are involuntarily committed, so that's a constitutional right. And it often, it goes without saying because everyone in the hospital knows that if you're there you should be treated. But again, that is an issue that often comes up for people with intellectual disabilities who are in a psychiatric hospital cause it's just not really the right setting for them a lot of the time.
Jim: I had not been aware, I think anyway, that developmental disabilities could land you in a psych facility.
Jesse: It actually varies quite a bit depending on the state. Some states have a really broad definitions of what types of conditions, or symptoms, can lead to detention in a psych facility. Other states are really specific in those definitions and only allow commitments for symptoms of a mental illness. But even in the states that do have narrow definitions, that only allow for people to be committed for symptoms of a mental illness, even in those states there is virtually no check against the opinion of a clinician in the early stages of the commitment process. So if a clinician observes symptoms, but doesn't really understand whether those symptoms are connected to a diagnosable mental illness, or a developmental disability, or an intellectual disability, that clinician can detain the person and, essentially, just sort out the details later.
Jim: Psych facilities are basically, you are not a criminal, but not someone we want around. It doesn't have to be a mental health issue, it could be, you know, developmental disability, it could be some kind of cognitive decline, it could be anything. But we're just gonna, this is where we put you.
Jesse: Yeah, it often seems like confining someone in a psych facility is the default action taken when the system has failed that person at every other step along the way. Whatever the underlying reason for that person's distress might be, safe and respectful community-based treatment should be made available and encouraged before involuntary confinement is ever even considered. And there was actually a Supreme Court case that attempted to address some of these issues, Olmstead versus LC.
Jason Parmer: Olmstead is a Supreme Court case that interprets the Americans with Disabilities Act, and even before that there's the Rehabilitation Act. But the Rehabilitation Act was passed back in the seventies and it prohibits discrimination against individuals solely by reason of disability, by any program or activity that receives federal funding. So, if you receive federal funding, you couldn't discriminate against people on the basis of disability. That was expanded in the Americans with Disabilities Act to prohibit discrimination by any entity that operates as a place of public accommodation. And there are different titles, the title two of the ADA pertains to public and state governments. And there are other titles that pertain to, like, train stations, public accommodations, airports, ADA applies to that, the post office, any place where the public goes. But Title two pertains specifically to state and local governments.
So the Olmstead case came up in the late nineties, and it had to do with two people, Lois Curtis and Elaine Wilson, who had mental illness and developmental disabilities, and they were voluntarily admitted to a psychiatric unit in the state run Georgia Regional Hospital. Following the women's medical treatment there, they were deemed ready for release by medical professionals there. However, the women remained confined for several years after their initial treatment was concluded because there was no placement for them. So they filed suit and the case went up to the United States Supreme Court in a case called Olmstead versus LC in 1999. In Olmstead, the court found that a state is obligated to provide community-based treatment for people with disabilities if;
One, the state's treatment professionals found community-based treatment appropriate.
Two, the affected individuals do not oppose community-based treatment, because some people would prefer to be in an institution, so you have to take into account the person's wishes.
And three, the community placement can be reasonably accommodated taking into account the state's resources and the needs of others with similar disabilities. And there's a defense that the state can raise called a fundamental alteration defense. If the state can demonstrate that modifications would fundamentally alter the nature of services, programs, or activities that they offer, then the ADA may not require an accommodation in that.
So this Olmstead is really the keystone for community treatment. It establishes a right under the Americans with Disabilities Act to community-based treatment, if it's available and if the person wants it, and if it can be reasonably accommodated by the state. But since Olmstead, I mean the United States Department of Justice has pages dedicated to litigation that it participates in that's related to Olmstead, for nursing facilities, workshops, Medicaid services, mental health facilities, institutions for people with intellectual or developmental disabilities, persons at risk of institutionalization, education. Olmstead and the ADA touch a lot of areas, and the Department of Justice has been actively involved for the last 20 years in litigating in these areas. And it really helps the P&As see what happens in other states. I look at Olmstead decisions in other states to see what's been required, you know. North Dakota had a settlement last year on their nursing facilities, so I look at that and see what is the DOJ requiring North Dakota to do, and how can I use this to help people in West Virginia? Because the ADA is a federal law, it applies to all state governments. So, you know, what happens in North Dakota, something similar could happen here, just depends on the facts of the case. And P&As work with the DOJ to determine what the situations are on the ground because P&As are kind of the boots on the ground in monitoring. And so we understand where the problems are and so sometimes what we do, and I do, is file an Olmstead complaint on behalf of an individual, or a few individuals, who are in a similar situation and have it reviewed by the DOJ and see if they want to act. If the DOJ does say, yes, we will help you. I mean, you can imagine having someone from the Department of Justice come in and start helping you on a case, trying to get someone out of a hospital, it's a great help. I complain to the West Virginia DHHR all the time, but I don't always have a Federal prosecutor with me when I'm doing it. So, it helps and I really appreciate the assistance that they give to the P&As.
But Olmstead and the ADA are really the legal mechanism for people to get out of institutions and to get community-based treatment.
Jim: I'm wondering if there are states that have gone through this, been told, okay, you need to do more community treatment, that have collectively said, oh, Wow. Yes, we really should. And we're gonna take this extremely seriously, and I know it sounds like I'm joking or whatever, but seriously, like, is, is this a bunch of states dragging their feet not wanting to do it? Or saying they can't do it? Or maybe they're just really, they don't have the resources? Are there times when this has led to states like, yeah, this is a moment of self-reflection and we're gonna do this?
Jesse: There's often this institutional resistance to change, particularly change that centers the needs of the person who's being pushed through the institution. And let's assume that's not malice, that is not intentional, then what is it? Why are these state and local institutions so slow, and so resistant to change?
Jason Parmer: Well, inertia is a real thing in state government and you know, we have been arresting people in crisis for a long time. We've been involuntarily committing people who we don't know, the family, it's just at the end of their rope and they don't know what else to do. And, you know, who do you call when someone's in crisis? So what we have in place now has not changed for a long time. And just changing a system requires, you know, public education, I think to help the public understand that people in crisis can be helped in another way. But in order to convince someone of that you actually have to have a system that works in place and has results. And other states have done that. There's communities around the country that have examples of crisis care, but all communities' needs are different too. I mean, you have different types of people living in different places, but there are models out there that can be followed. It's just convincing the folks in law enforcement, in corrections, in the Department of Health and Human Resources, in the legislature that the system needs to change. And have them all agree on how it would change. That's the difficulty, is getting all these parts of state government together at the table to talk about their problems and then come up with solutions.
State governments, and I think government in general, tend to work in silos. You know, law enforcement doesn't necessarily know what the Department of Health and Human Resources is doing, but their work affects each other. And Division of Corrections, you have people discharging from a prison who need nursing care, but no private nursing facility will take someone from a prison usually, because they're a convicted felon. So, problems with corrections affect the Department of Health and Human Resources because often, well, maybe not often, but sometimes discharged inmates will just be dropped off at a local hospital and end up involuntarily committed because that's the safety net. The safety net is a psychiatric hospital, because you can lock them up and they're being in theory taken care of, but really what they might need is nursing care. They don't need psychiatric care. But you can't, there's no facility of last resort for nursing facilities. You know, you can't make a nursing facility take someone, but a psychiatric hospital can't say no, just like a jail can't say no. If someone's arrested, the jail has to take them. If someone is involuntarily committed, the psychiatric hospital has to take them.
I mean, the difficulty is just getting state government to work together and see the problem the same. Everyone sees their own individual problems but, you know, part of what I try to do is get different parts of government together and have them see the problems overall, rather than just in their one silo.
The problems in facilities are really symptoms of a greater problem. And the problems that I often see are people unable to discharge out of facilities once they're in them. And that's really a symptom of a greater systemic problem of having undeveloped community-based services system in the state.
Jim: I can very easily imagine a world where the patient advocates are people that the hospitals are happy to see. There are, oh, there are rules that we're not following? Oh, okay, like, so help us understand what we're not doing and, you know, we’re overwhelmed. We have a lot of things to deal with. This doesn't have to be adversarial, and I'm not saying it's the P&As. You can have relationships between advocates and providers that are beneficial from a therapeutic perspective, and that help the patient, and that help the hospitals, and help everybody and just, oh my god. There are parts of this that are awful, and also just stupid. Just stupid.
Jesse: Yeah, I think Jason framed it really well that all of these different institutions are operating within their own silos, and it can be really challenging to present a story that is compelling enough for people to see outside of their own silo. Which actually connects to the events that led to the formation of P&As, which is something that may have never happened without Geraldo Rivera's reporting on Willowbrook.
Jim: Was this like a worthwhile thing? Or is this like a stupid Geraldo Rivera bullshit piece?
Jesse: No, it was a serious piece of journalism from Geraldo Rivera, called Willowbrook: The Last Great Disgrace.
Jim: it's called Willowbrook?
Jesse: Uh huh, you can find it online, and it really helped expose horrific systemic abuses of people being detained in an institution.
Jim: Jesus. Okay.
Jesse: Jason helped explain more about what this Willowbrook investigation was and how it led to systemic change.
Jason Parmer: You know, when the P&A system was developed in 1975, It was promoted by then New York State Senior Senator Jacob Javits after some publicity in New York about Willowbrook. Which was a report from Geraldo Rivera, back in a previous life of Geraldo's, titled Willowbrook: The Last Great Disgrace. It's on YouTube if you, you may have seen it already, but Jacob Javits was a state senator for New York and he advocated to have the P&A program a part of the 1975 Developmental Disabilities Act, and that was the first P&A. I mean, they didn't exist before then, and the DD Act, it asked the governor of every state to designate an agency to be the P&A. And to ensure that P&As are independent of service providers and they're also independent of state government. So that was some really great foresight, I think, because, the P&A does fill a gap between the system and the person, and the people involved in the system. There's a saying, “Nothing about us without us”. Well, I think the P&A tries to be the advocate for that person when the system is working without you, they're just working at you.
You know, I give credit to our predecessors that realized that maybe a P&A would be a good idea, and creating the whole concept of it, because there is definitely a role to be played to navigate that difficult system. I mean, it takes years to understand all the moving parts and to figure out why systems act the way they do and why people are in the places they're in when they, you know, doctors say they shouldn't be in the hospital, but they are. And so I'm really, you know, fortunate to work at a P&A so that I can, you know, help navigate that system and learn to understand it. And then try to hopefully enlighten others to different ways the system could work. And better ways to help the folks that, you know, are in the institutions and really don't need to be.
Jim: I love this guy. I just wanna just say I love him.
Jesse: Well, I'm glad you love him.
Jim: I also love you, Jesse.
Jesse: Too late.
Jim: Damn it.
Jesse: (laughter)
Jim: So this has felt like the most hopeful interview. He's presenting, this is what needs to happen, we need to get people together, we need to get them outta their silos, communicating. But he seems almost explicitly like, this sense that these groups are siloed, they're not talking to each other, but if we could get them together something could happen. And I don't know, I feel more optimistic hearing him talk than I have, I think, anybody so far.
Jesse: Yeah, and I think this is why Protection and Advocacy organizations are so important. We need people who are independent of the systems, who understand what rights are supposed to be in place. Who can monitor and step into these really complex webs of interlocking federal, state, and local systems to try and figure out what needs to be done to help the person.
Jim: I mean, what I'm hoping that this does is it makes me realize what a positive feeling is, so that way when we swing back the other way it feels that much worse to be slammed back down. So this is, I love this journey we’re on.
Jesse: Well, I'm glad you're loving this journey Jim, because next time on Committable we'll be talking about mental health laws in Texas.
Jesse: Committable is produced by Jim McQuaid, Michelle Stockman and me, Jesse Mangan. All music is from the Song Reasonable by Christopher G. Brown.