Geri Clark
Appearances
Tony Mantor: Why Not Me the World
Jerri Clark: A Mother's Journey Through Loss and Advocacy
Dangerousness can make a little bit more sense if you have a psychiatric deterioration standard that defines what mental incapacity might logically lead to dangerousness so that again we can prevent harm when somebody is really really sick instead of waiting for harm to happen. And I can give you an example that's quite heartbreaking, so trigger alert.
Tony Mantor: Why Not Me the World
Jerri Clark: A Mother's Journey Through Loss and Advocacy
One of my Oregon family advocates has a son with severe schizophrenia, paranoia, delusional thinking, quite unwell, and his mother became guardian, was able to get him hospitalized, but the hospital refused to medicate him against his objection despite florid psychosis. They sent him home still extremely psychotic, and he murdered his mother.
Tony Mantor: Why Not Me the World
Jerri Clark: A Mother's Journey Through Loss and Advocacy
Well, first of all, I don't think there's anything that you can do to overblow a situation of a psychotic young man who was discharged from a hospital so sick that he killed his mother. You know, you can't call it stigma to tell the truth. These stories come my way all the time. They are heart-wrenching stories. And we've got to get past being told that it's stigmatizing to tell the truth.
Tony Mantor: Why Not Me the World
Jerri Clark: A Mother's Journey Through Loss and Advocacy
I think our anti-stigma campaigns across the country have done a disservice in making the general public so uncomfortable to talk about severe mental illness, that the truth gets buried. So I think the way to bust through stigma is to get real about what is truly happening. And individuals with untreated and undertreated severe mental illness are more likely to be violent.
Tony Mantor: Why Not Me the World
Jerri Clark: A Mother's Journey Through Loss and Advocacy
And those that they are violent against are most likely to be family members and loved ones. These people are not criminals and they're not violent by nature. They are very, very sick and their brains are creating confusion in their minds. I recently met a family and the young man dabbed and killed his mother, dabbed her in the heart because he thought that was how to save her soul.
Tony Mantor: Why Not Me the World
Jerri Clark: A Mother's Journey Through Loss and Advocacy
I had a son with severe mental illness. His first psychotic break was at age 19 when he was a college freshman with a really promising future. He had been a state champion in speech and debate when he finished high school, went off to college with a debate scholarship, and in the middle of his freshman year, experienced a psychotic break that brought him home. He deteriorated extremely rapidly.
Tony Mantor: Why Not Me the World
Jerri Clark: A Mother's Journey Through Loss and Advocacy
Someone in psychosis is not a violent person by nature. They are completely confused because their brain is misperceiving reality. And we've got to be able to talk about the truth of that and admit that we want to prevent harm instead of requiring harm as a criteria for treatment.
Tony Mantor: Why Not Me the World
Jerri Clark: A Mother's Journey Through Loss and Advocacy
A hundred percent. And there are some really spectacular stories out there of recovery. A young man that I know who received assistant outpatient treatment in Texas, I like to think of him as what my son could have been if my son had gotten what he got. He got assisted outpatient treatment. He got the medication clozapine. He got a team of people looking out for him, keeping track of him.
Tony Mantor: Why Not Me the World
Jerri Clark: A Mother's Journey Through Loss and Advocacy
helping get him back on track if he started to decompensate again. My son didn't get any of that.
Tony Mantor: Why Not Me the World
Jerri Clark: A Mother's Journey Through Loss and Advocacy
I couldn't agree more. I do believe that we need a national approach to severe mental illness so that states are accountable for the outcomes because the outcomes right now are horrific in almost every state. But that information is really not being tracked.
Tony Mantor: Why Not Me the World
Jerri Clark: A Mother's Journey Through Loss and Advocacy
We don't have a national database that's going to say how many individuals with untreated severe mental illness are incarcerated, have killed family members, live under bridges.
Tony Mantor: Why Not Me the World
Jerri Clark: A Mother's Journey Through Loss and Advocacy
That's right. And the treatment systems that we do have for severe mental illness, I like to describe as a funnel. Remember those coin funnels where you would put the penny in and the penny would spin down until it finally went down in the bottom of the funnel? I feel like that's what happened to my son.
Tony Mantor: Why Not Me the World
Jerri Clark: A Mother's Journey Through Loss and Advocacy
Once he was spinning around that funnel, the system was just watching and waiting for him to fall down through the hole in the bottom. And down through that hole, we have social security systems that don't give you a very high quality of life. We have Medicaid systems that don't give you access to the most sophisticated type of care.
Tony Mantor: Why Not Me the World
Jerri Clark: A Mother's Journey Through Loss and Advocacy
We have homelessness systems that might get you a shelter or a tent, but rarely help you get into the kind of supportive housing that's really needed for a long-term recovery and a higher quality of life.
Tony Mantor: Why Not Me the World
Jerri Clark: A Mother's Journey Through Loss and Advocacy
It's not like the movies.
Tony Mantor: Why Not Me the World
Jerri Clark: A Mother's Journey Through Loss and Advocacy
You mean what I would tell people if someone in their family became ill or just the general population?
Tony Mantor: Why Not Me the World
Jerri Clark: A Mother's Journey Through Loss and Advocacy
Well, let me tell you an example that a coworker and I just wrote an op-ed that we hope gets picked up somewhere. If someone that you love shows signs and symptoms of a stroke, you anticipate a certain response from the medical system, right? You take them to the ED. Even if the person says, I'm fine, leave me alone. I just have a headache. I just want to take a nap. You
Tony Mantor: Why Not Me the World
Jerri Clark: A Mother's Journey Through Loss and Advocacy
And I started to learn about the inequities in the treatment system and the poorly organized treatment system in the hardest way possible. I didn't know anything about psychotic disorders before my son was in front of me having a psychotic break. So I learned everything I needed to know a little bit too late. in the process of trying to guide my son through his illness.
Tony Mantor: Why Not Me the World
Jerri Clark: A Mother's Journey Through Loss and Advocacy
you see their face drooping, they're slurring their speech, you know better. And you take them to the emergency department and there is a team that rallies. They have a code on the loudspeaker. You get long-term engagement with recovery support. The family's engaged, right? If you have a loved one
Tony Mantor: Why Not Me the World
Jerri Clark: A Mother's Journey Through Loss and Advocacy
who has a psychotic break like I described, when my son came home from college, deeply concerned about demons, ripping around the house, locking off rooms, exercising demons from our walls. If you have someone who suddenly falls into psychosis like that, you will not get the same kind of response that you would expect if someone that you love was having a heart attack or a stroke.
Tony Mantor: Why Not Me the World
Jerri Clark: A Mother's Journey Through Loss and Advocacy
you will get a system that says, have they threatened to kill themselves? Have they threatened to kill you? Do they have any weapons? Is anyone harmed? Do they want to go to the hospital? If not, it is their civil right to say no. They're having a neurodivergent experience. So we'll just let them be. If you've never been witness to a psychotic break, it is nothing like you can imagine.
Tony Mantor: Why Not Me the World
Jerri Clark: A Mother's Journey Through Loss and Advocacy
And you will not get any of the help that you would expect.
Tony Mantor: Why Not Me the World
Jerri Clark: A Mother's Journey Through Loss and Advocacy
Yeah, there's just a serious lack of understanding about what psychosis is. And another thing that's important for the public to know is psychosis causes brain damage. So ongoing exposure to untreated psychosis worsens the condition and makes it less likely that the person will recover in the long term. Which is what happened to my son, and I watched the brain damage occur over four years.
Tony Mantor: Why Not Me the World
Jerri Clark: A Mother's Journey Through Loss and Advocacy
His chances for recovery were much better at the beginning, but we kept being told he had to be much sicker before he would be eligible for services.
Tony Mantor: Why Not Me the World
Jerri Clark: A Mother's Journey Through Loss and Advocacy
Correct. That's correct. And when he was his sickest, he was incarcerated, not hospitalized.
Tony Mantor: Why Not Me the World
Jerri Clark: A Mother's Journey Through Loss and Advocacy
The other area that is really lacking in appropriate understanding is the area of family engagement. There's this misunderstanding in the system that families have given up, that families don't care, or that families actually caused these illness conditions. And that is incorrect. And I know that because I talk to families all across the country.
Tony Mantor: Why Not Me the World
Jerri Clark: A Mother's Journey Through Loss and Advocacy
who are doing everything in their power to save their loved ones. I talked to family members who have been almost murdered by their loved ones in psychosis, but they are still doing everything they can to save the lives of those loved ones. Family engagement is really poor across the system. HIPAA is badly misunderstood across the system.
Tony Mantor: Why Not Me the World
Jerri Clark: A Mother's Journey Through Loss and Advocacy
Families are in it for the long term, and they need to be engaged as allies in the care of their loved ones, but they also need to be equipped. with the right information and the right support so that they could continue to do what they want to do, but they become unable to do because the system is so lacking.
Tony Mantor: Why Not Me the World
Jerri Clark: A Mother's Journey Through Loss and Advocacy
Our son was living in our home, our health insurance, we were paying for everything, but the system kept telling us he wasn't sick enough for anything. So we weren't getting any of the supports or information we needed to continue to support him. They told us that he needed to be homeless. He needed to have a track record of incarcerations, crises, suicide attempts.
Tony Mantor: Why Not Me the World
Jerri Clark: A Mother's Journey Through Loss and Advocacy
He had to check all the trauma boxes. before he would be eligible for the things at the bottom of that funnel that might help. But yeah, by then he was so unwell that his illness really wasn't going to respond as well to treatment. He still could have survived if the services had been more robust, but they weren't.
Tony Mantor: Why Not Me the World
Jerri Clark: A Mother's Journey Through Loss and Advocacy
He struggled for about four years before taking his own life in 2019.
Tony Mantor: Why Not Me the World
Jerri Clark: A Mother's Journey Through Loss and Advocacy
You're very welcome. I really appreciate the opportunity to speak with you. You've got potential to make some real impact. I really appreciate you inviting me on to talk about severe mental illness.
Tony Mantor: Why Not Me the World
Jerri Clark: A Mother's Journey Through Loss and Advocacy
Initially, he came home from college deeply paranoid about spirits that were trying to harm him and us. The most profound example I have is he decided that our downstairs bathroom had been possessed. And he did some kind of strange ritual in there and then closed the door and made me promise that no one ever would go into that room again.
Tony Mantor: Why Not Me the World
Jerri Clark: A Mother's Journey Through Loss and Advocacy
Yes and no. There are symptoms of an coming psychotic break and those symptoms are referred to as prodomal. Sometimes they're only evident in hindsight. And I would say in my case, it was mostly only evident in hindsight, especially because he was a college freshman.
Tony Mantor: Why Not Me the World
Jerri Clark: A Mother's Journey Through Loss and Advocacy
So there are a lot of changes happening in a person's brain, in their personality around that age anyway, but that is sort of a typical age of onset. In hindsight, I can see that he was withdrawing. He was starting to be more anxious than he used to be. Again, he also was a college freshman. What college freshman is not anxious, right? So yes, there had been some symptoms.
Tony Mantor: Why Not Me the World
Jerri Clark: A Mother's Journey Through Loss and Advocacy
My son also suffered from Tourette's syndrome, which he had had from age six, which created a lot of issues for him. He overcame that. And as I said, he became a state champion in extemporaneous speaking. So he really did overcome his Tourette's in a way that was quite remarkable. I do believe that there were some linkages in terms of his brain having some struggles.
Tony Mantor: Why Not Me the World
Jerri Clark: A Mother's Journey Through Loss and Advocacy
You know, was it brain inflammation? Was it some kind of an autoimmune response to viruses or bacterial infections? I still have a lot of questions that were never answered by the medical community. For the most part, when he fell ill with a
Tony Mantor: Why Not Me the World
Jerri Clark: A Mother's Journey Through Loss and Advocacy
I'm going to tell you what happened to us, but I'm also going to tell you that there is no good pathway for anyone in that situation as a family member. Most communities are going to tell you to take somebody like that or somebody in that situation to an emergency department. And emergency departments are poorly equipped to manage psychiatric crises for a range of reasons.
Tony Mantor: Why Not Me the World
Jerri Clark: A Mother's Journey Through Loss and Advocacy
In our situation, we had a friend who was a family doctor who knew us and knew our son. And when I called, was willing to see him fairly quickly in order to get him initially medicated. So we were a little bit fortunate in that I was able to get him in. She diagnosed severe bipolar disorder with psychotic features right away and prescribed lithium that did help his symptoms in the short term.
Tony Mantor: Why Not Me the World
Jerri Clark: A Mother's Journey Through Loss and Advocacy
There's a lot of complicating factors with psychiatric medications, one of which is the side effects are undesirable. And my son really didn't like the way the lithium made him feel. But also, that family doctor was not the right person to do all of the follow-through care. So we transferred to a psychiatric nurse practitioner who was kind of at the end of her career and not terribly invested.
Tony Mantor: Why Not Me the World
Jerri Clark: A Mother's Journey Through Loss and Advocacy
One aspect of the severe mental illness treatment system that the general public is probably not aware of is that insurance companies will often give you a list of providers in your network area that do the type of treatment that you're looking for.
Tony Mantor: Why Not Me the World
Jerri Clark: A Mother's Journey Through Loss and Advocacy
In psychiatry, those lists are often full of providers who are no longer taking new patients, won't take the diagnosis code, won't treat someone with a very severe condition. So those lists are referred to as ghost networks. And the ghost network that I got from our insurance company had about 30 names on it, and none of them would take my stuff.
Tony Mantor: Why Not Me the World
Jerri Clark: A Mother's Journey Through Loss and Advocacy
That's a really good question because I don't know that the diagnosing in the psychiatric world is all that sophisticated. My son's thoughts and speech were all over the place. When he went in to talk with our family practice doctor that very first time, he was just all over the place in what he was talking about.
Tony Mantor: Why Not Me the World
Jerri Clark: A Mother's Journey Through Loss and Advocacy
And he was making connections between random things that really didn't make sense if you were listening for understanding. So she was able to explain to both of us that he seemed to be having a flight of ideas. Another term for that is word salad. She didn't use that term in the moment, but I learned that term later. So his speech was quite manic.
Tony Mantor: Why Not Me the World
Jerri Clark: A Mother's Journey Through Loss and Advocacy
It wasn't that hard to figure out what was going on.
Tony Mantor: Why Not Me the World
Jerri Clark: A Mother's Journey Through Loss and Advocacy
Well, we worked with the psychiatric nurse practitioner for a while, but my son's commitment to taking his medication was limited by the undesirable side effects, but also by a symptom of illness that I didn't understand at the time, but I have since learned is referred to as anosognosia. And this is a really important term to understand.
Tony Mantor: Why Not Me the World
Jerri Clark: A Mother's Journey Through Loss and Advocacy
So anosognosia is a neurobiological symptom of severe mental illness. Estimates are that it's present in at least half of cases of individuals with schizophrenia and something around 40% of individuals with severe bipolar disorder. So anosognosia, again, is a symptom of illness that means the person's brain is unable to perceive its own impairment. So the person knows they are not sick.
Tony Mantor: Why Not Me the World
Jerri Clark: A Mother's Journey Through Loss and Advocacy
It is not denial. It is the brain's inability to see that there's a problem. So a person with anosognosia will know that they are not sick and that the problems in their lives are related to external causes.
Tony Mantor: Why Not Me the World
Jerri Clark: A Mother's Journey Through Loss and Advocacy
So they'll blame other people, circumstances for what seems to be blowing up their life when in fact what's going wrong is in their own brain and their own inability to distinguish between reality and their perception of what is happening.
Tony Mantor: Why Not Me the World
Jerri Clark: A Mother's Journey Through Loss and Advocacy
It's a really important question. There are two doorways into the treatment system. There's a voluntary door and there's an involuntary door. And a person who lacks insight into their condition will almost never go through that voluntary door.
Tony Mantor: Why Not Me the World
Jerri Clark: A Mother's Journey Through Loss and Advocacy
The only way that someone might be motivated to go through the voluntary door is if they have a long history of evidence helping them connect treatment to a higher quality of life and a trust and willingness to to let other people help them find treatment because somehow they have become motivated to do it because they think maybe they'll have a higher quality of life. That is a heavy lift.
Tony Mantor: Why Not Me the World
Jerri Clark: A Mother's Journey Through Loss and Advocacy
So for most families or caregivers, whoever the caregiver might happen to be, they've gotta somehow help their loved one access treatment through the involuntary door. And every state has its own laws regarding involuntary treatment.
Tony Mantor: Why Not Me the World
Jerri Clark: A Mother's Journey Through Loss and Advocacy
Well, thank you for having me on.
Tony Mantor: Why Not Me the World
Jerri Clark: A Mother's Journey Through Loss and Advocacy
Generally, what is required is an extreme level of illness that involves an emergency, which usually means there's a victim, because most states require evidence of harm. So that usually means a suicide attempt, a homicide attempt, or some kind of major assault. is required before involuntary treatment is available.
Tony Mantor: Why Not Me the World
Jerri Clark: A Mother's Journey Through Loss and Advocacy
Sure. My title is Resource and Advocacy Manager. I work for a national nonprofit called Treatment Advocacy Center.
Tony Mantor: Why Not Me the World
Jerri Clark: A Mother's Journey Through Loss and Advocacy
Our state laws need to account for psychiatric deterioration. And there are some states that now have standards that allow for psychiatric deterioration as an entryway into involuntary services. So if a person presents so disconnected from reality that it seems evident that they will soon be at risk for harm.
Tony Mantor: Why Not Me the World
Jerri Clark: A Mother's Journey Through Loss and Advocacy
They can be treated involuntarily even when they can't understand their situation if the law allows for that psychiatric deterioration as a criteria. That is the beginning. What's happened across the country is that we no longer have treatment standards based on someone's medical needs. We have treatment standards that are based on legal criteria. And the legal criteria that require dangerousness
Tony Mantor: Why Not Me the World
Jerri Clark: A Mother's Journey Through Loss and Advocacy
have gotten so extreme that they require evidence of harm, which in effect means they require harm and violence instead of preventing harm and violence. But the psychiatric deterioration standards can shift that.
Tony Mantor: Why Not Me the World
Jerri Clark: A Mother's Journey Through Loss and Advocacy
And we are a small organization with the mighty goal of advocating for changes in treatment laws and policies and practices that are creating really significant barriers to treatment for individuals with the most severe mental illness conditions, such as schizophrenia, severe bipolar disorder, and severe depression that would include psychotic features.
Tony Mantor: Why Not Me the World
Jerri Clark: A Mother's Journey Through Loss and Advocacy
Thanks for asking. First of all, I spend a bit of my workday talking to families across the country about their circumstances and how they're attempting to navigate the system that exists. So I get an earful every day from family members stuck in situations as dire as the situations that I went through as a family member myself.
Tony Mantor: Why Not Me the World
Jerri Clark: A Mother's Journey Through Loss and Advocacy
So I'm boots on the ground talking to families about the reality of the situation across I also help to manage a community resource center on the website for Treatment Advocacy Center, where we provide information to help families and individuals who are attempting to navigate the services. So, for example, we have an article on the criminal legal system and how to try to navigate that.
Tony Mantor: Why Not Me the World
Jerri Clark: A Mother's Journey Through Loss and Advocacy
We have an article about HIPAA confidentiality laws and a lot of misunderstandings around HIPAA laws are explained in that article. And I also support Treatment Advocacy Center's work to develop grassroots advocates across the country who are using their stories to try to influence change in the system, to try to make a more sensible treatment system.
Tony Mantor: Why Not Me the World
Jerri Clark: A Mother's Journey Through Loss and Advocacy
For example, right now, I'm working closely with a group of families in the state of Oregon who are going to rally in the upcoming legislative session to try to get Oregon lawmakers to better define dangerousness in statute.