Jerri Clark: A Mother's Journey Through Loss and Advocacy

Welcome to Why Not Me the World? Podcast hosted by
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alone in this world. Hopefully you gain more awareness, acceptance,
and a better understanding for autism around the world. Hi An,
Tony Mantor, Welcome to Why Not Me the World? Humanity
over Handcuffs the Silent Crisis special event. Joining us today
is Jerry, resource and Advocacy manager for TACT, the Treatment
Advocacy Center. She's here to discuss her role in what
led her to work with the center. She possesses a
wealth of knowledge and we're pleased to have her on
the show. Thanks for coming on, Well, thank you for
having me on. Oh it's my pleasure. Can we start
off with what you are doing now?
Sure?
My title is Resource and Advocacy Manager. I work for
a national nonprofit called Treatment Advocacy Center 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.
What led you to get into this line of work.
I had a son with severe mena tell illness.
His first psychotic break was at age nineteen, 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, 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. He
struggled for about four years before taking his own life
in twenty nineteen.
Well, I'm sorry to hear about that. That's a tough
thing to take. What led up to this, What did
a psychotic episode look like for your son?
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.
It's my understanding that one in eight people around the
world have some sort of mental disorder. I also understand
it doesn't happen overnight. It often takes a while before
it actually surfaces. Now, looking back at your son, is
this something that developed over time or did it happened
quicker than you expected?
Yes and no.
There are symptoms of a 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. 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. 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 and as I said,
he became a state champion in extemporaneous speaking. So he
really did overcome his turettes in a way that was
quite remarkable. I do believe that there were some linkages
in terms of his brain having some struggles, 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 psychotic illness, it happened pretty much all within
a week.
Once all of this had started, what was your pathway
to try to get him back on track for better
mental health.
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 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. 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. 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 that lithium made
him feel. But also that family doctor was not the
right person to do all of the follow through here,
so we transferred to a psychiatric nurse practitioner who was
kind of at the end of her career and.
Not terribly invested.
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.
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
thirty names on it, and none of them would take
my son.
What we're some of the things they tested him for
to create that diagnosis that they ultimately gave you.
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 and
what he was talking about, 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 explained
about the viz 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 man.
It wasn't that hard to figure out what was going on.
Once you got past the ghosting of it. What was
the next step to try to get around that obstacle.
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 anasignosia, and
this is a really important term to understand. So anasignosia
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 forty percent of individuals
with severe bipolar disorder. So anasignosia, 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 set.
It is not denial, It is the brain's inability to.
See that there's a problem.
So a person with anna signojo will know that they
are not sick and that the problems in their lives
are related to external causes. 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.
I spoke with a lady just the other day. She
brought up the same term that you just mentioned. If
I remember correctly, I think it took her about three
and a half years to get her son treated in
such a way that there were no reoccurring issues that
popped up. I believe it's been about a year now.
He's been really good with his medication. What's the problem
sys to get that treatment and find it so they
can take advantage of it, so ultimately it can help them.
Then after a while they start coming back to maybe
not exactly what they were, but better than they are
at this point in time.
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. 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 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.
So for most families or caregivers, whoever the caregiver might
happen to be, they've got to somehow help their loved
one access treatment through the involuntary door.
And every state has.
Its own laws regarding involuntary treatment.
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 or attempt, or some kind of major assault
is required before involuntary treatment is available.
So how do we change that? It only makes sense
to me that sometimes we have to use common sense,
and that does and get used much. It's kind of
like the police saying, well, we'd love to help him,
but we can't because no crime has been committed yet. However,
we know that that path is where it's leading to.
So how do you get that involuntary help so that
person doesn't create a problem, so that way he avoids
the law and ultimately gets the help that he needs.
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,
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 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.
So now, with that said, you are working for a
company that is advocating for some of those changes to
be made. What are some of the things that you do,
if not daily, weekly, or whatever timeframe may be, to
work on getting some of those changes done so it's
better for everyone involved.
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 earfull every day from family members stuck
in situations as dire as the situations that I went
through as a family member myself. So I'm boots on
the ground talking to families about the reality of the
situation across the country. 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.
We have an article about hippa confidentiality laws, and a
lot of misunderstandings around hippo laws are explained in that article.
And I also support treatment advocacy centers 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. 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. Dangerousness can make a little
bit more sense if you have a psychiatric deterioration standard
that defines what mental incapacity might logically lead too 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. One of my Oregon family advocates has a
son with severe schizophrenia, puranoia, 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.
Yeah, that's real tough. It's situations like that, along with
other things with people that have severe mental health, that
creates this stigma that no one really wants to talk about.
And I find a lot of people do not want
to accept that it's actually there. It seems like it's
always going to be until people start getting a better
understanding about it, that the whole perception they have will
still be there. How do we beat that? How do
we create an atmosphere where it's not something that people
are afraid to talk about. Then, of course, if something
does happen, we have to make sure that it doesn't
get overblown so it doesn't create a situation where nothing
can get accomplished.
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 is 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. 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, 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 dad and killed his mother,
dad her in the heart because he thought that was
how to save her soul. 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.
I think what people need to know is for every
bad situation out there, there is a good situation happens
that they need to hear about. If they can hear
the good things along with the unfortunate bad things, Like
you said, be real with the truth of the good
things that happen as well as the bad. Maybe that
can help build that pathway to ultimately build that bridge
to show that a bad situation with a person can
be overcome and turn it into.
Good one 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
about patient treatment, he got the medication closet pine, he
got a team of people looking out for him, keeping
track of him, helping get him back on track if
he started to decompensate again.
My son didn't get any of that.
With everything's being said here, I think, and I think
you'll agree, that this has to be addressed on a
national level. That way, there's least a certain set of
rules that they have to follow. Then if the states
decide they want to do more and make it better,
that's a good thing.
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.
When you say tracked, can you explain and expand on that.
We don't have a national day database that's going to
say how many individuals with untreated severe mental illness are incarcerated,
have killed family members, live under bridges.
Yeah, it seems like there's something around every corner that
is preventing you from moving forward to help these people.
That's right, 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 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. We have holmelessless 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.
It's kind of sad. I think people have a perception
in their mind of all these people and the issues
that they can have because they see it on TV
or in the movies. Like I tell a lot of
people that I work with here in Nashville, it's not
like the movies.
It's not like the movies.
What would you like to tell people to give them
a realistic view of what they need to know if
they were ever to encounter something like this that we're
talking about.
You mean, what I would tell people if someone in
their family became l or just the general population.
It can be either one. The main purpose of this
podcast is for people that might not know anything about this,
then hopefully they can get a little understanding and information
about what we're talking about.
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 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 loud speaker.
You get long term engagement with recovery support.
The families engage right.
If you have a loved one 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.
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 witnessed to a psychotic break.
It is nothing like.
You can imagine, and you will not get any of
the help that you would expect.
This is deaf only a subject where people need to
get a better understanding so to make things a lot
better for everyone.
Yeah, there's 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.
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.
Yeah, and then when he does get sicker, it's at
the end where he could have been help.
Correct, that's correct.
And when he was his sickest, he was incarcerated, not hospitalized.
Right, right. You definitely have to get more knowledge and
more help out there to better help those people that
need it.
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 who
are doing everything in their power to save their loved ones.
I talk 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 bore across the system.
HIPPA is badly misunderstood across the system. 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. 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. 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
served vived if the services had been more robust, but
they weren't.
Yeah, and that's very sad. Well, this has been great
to have you on Loss of great information, great conversation.
I truly appreciate you taking the time to come on
my podcast.
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.
It's been my pleasure. Thanks again, Thanks for taking the
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