NSSC: Voices of Change Part 3: Serious Mental Illness, Missed Care, and the Criminal Justice Gap

Welcome to Why Not Me Embracing Autism and Mental Health Worldwide?
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world one story at a time. Hi, I'm Tony Mantor.
Welcome to Why Not May Embracing Autism and Mental Health Worldwide.
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We bring together a group of seven voices, each with
their own experiences, perspectives, and stories. We will talk about
something that affects far more people than we often realize,
serious mental illness in the spirit of Mental Health Awareness Month.
This is not just a discussion, it's an opportunity, an
opportunity to listen, to understand, and to bring light to
conversations that are too often left in the dark. Joining
us today is Crystal Fox, David Hagar, Laura Crasian, Linda Mimes,
Judge Milton Mack, Rachel Streithe, and Anne Cochrane. This topic matters.
It touches families, friendships, and entire communities. This is the
final episode of our three part series that we'll focus
on serious mental illness. Today we are creating a space
where honesty is welcome, where stories can be shared, and
where understanding can begin or deepen. For all of us listening,
I'm grateful to everyone that's joined us today. Let's start
this episode with this. When someone says they have the
right to refuse help, but they're clearly in the middle
of psychosis or severe mental illness, are they truly capable
of making that decision? And if not, how do we
ethically step in without being seen as taking their rights
away but instead as trying to save their life.
Now, there is power attorneys which's going to be used
for mental health, and you could for those people. You
can say, look, while you're competent to make decisions, you
can put off this power attorney and you can define
who's going to be your fair provider. You can define
what par treatment you'll accept, and you can take yourself out. Now,
that'll take yourself out to a point. It won't take
you out of should become a violent and actually dangerous
to other people. But they'll take you off if you're
a risk of PIM. Now there's a sumone in Carolinas
has come up with that for him, but it hasn't
worked so far.
David, Psychologically speaking, when someone refuses help but they're thinking
is being shaped by psychosis, what are your thoughts on
helping them?
Yeah? I think of Grandma. You know, people care about grandma. Yeah,
you know, And if schizophrenia can be ballparked with dementia,
then people might sort of get it. I remember I
used to work in a family medicine doctor's clinic in Florida,
and he wound up being elected to the Florida House
and I went and talked with him in his office
at a time when I was advocating for a state
hospital to stay open and it got closed. But you know,
I was talking about anasagnosia, and I was asking, why
is it that a woman, you know, who's thirty years
old and neuropsychiatrically gravely disabled is sleeping under the bridge
to stay away from satellites and satellite beams? Why is
that okay? And considered freedom of choice? But if we
find grandma wandering around the neighborhood, we do something different.
And his response was pretty blunt, It was pretty earthy.
He said, people care about grandma. They don't give an
f about that girl under the bridge.
Yeah, that's sad to hear.
I recently talked to a sheriff in our town and
he was the head of the unit that services our town,
and I said, what if my mother had dementia and
she was wandering around and wandered into the traffic because
they had just arrested somebody I knew because he had
done that, and then he had hurled a threat at
the officers or something. I don't know all the circumstances.
And he said, oh, well, if somebody with dementia was
wandering around, we would never take them to jail. And
I said, it's the same thing, No, it isn't. It's
completely different. There is a chart somewhere that shows these
similar symptoms with schizophrenia, anisignosia, dementia, and Parkinson's anasignosia, because
anisignosia exhibits in stroke and different other neurological conditions. And
that is a big, big problem that you just brought up,
doctor Higart. That's a big problem because that's what we're
fighting against.
And they're supposed to be trained in c training.
Yeah, somehow people think that they have a choice when
they're younger and on the streets. Again, this class that
I was in today, I kept hearing that, well, they're
choosing to live on the streets, They're choosing this, they're
choosing that, And it's a lot of misinformation that I
think is getting better, but we have a long ways
to go now.
One option Judge Matt just brought up was power of attorney.
My understanding in many cases this can develop between seventeen
and twenty five. At that age, they are just living
in the moment, not living for a moment when they
might need help making decisions. So where do we go
from there?
We have psychiatric advanced directives that all the officials in
the state keep pushing parents to have for their psychiatrically
neuropsychiatrically challenged loved ones. But the trouble is if they
go back into psychosis and if they say they want
to rescind.
That they can.
So what I mean, the only good thing in it
would be that they put in where they'd want to
get treated, what drugs they don't want, you know, their preferences.
But what good is it really if it can just
be rescinded once they're sick again.
What really hits me is the time lost. Someone brought
up Eric Smith, and he and I talked about it,
and it took him years to find the right treatment.
And he's not alone. I've heard that same ten year
gap over and over again. So how do we shorten
that gap?
You have to do mandatory care. You have to, because
that's what happened to Eric. He got into a great
assisted outpatient treatment program in Texas with a wonderful judge.
I mean, what else can you do? You're asking really
hard questions, told me, But I like it.
Yes, you just have to because I know so many
young people that have lost And also, ten years is
the average from the time you show symptoms to the
time you get an actual diagnosis, and a lot of
these kids start getting sick in college and now the
colleges they cannot call the parents. They have these laws.
They can't call and say, hey, something's going on with
your kid. So it's just very frustrating. Everybody shuts out families,
and it's not right because the families are the primary
caregivers because the mental health departments they have abdicated their responsibility,
and all of the agencies, we're not paying for any assistance.
So you know, either your kid is going to be
on the street in the jail or you have to
take care of your kid. Well, that's not right, and
that is unethical for a society to dump that on
parents who are not trained. And you know, the advocates
I work with now I'm pretty enraged about it. My
background is in public policy and I never, never in
my life, when I was young and naive in grad school,
would ever think that this was happening in our country
because it is not just not right, and it's a
violation of people's human right to have health care, basic
health care.
Crystal, I think you have some thoughts on this as well.
Yeah, I have a strong opinion about this because I
have raised a daughter with autism who at one and
a half years old, we kind of thought, oh, something
just isn't isn't right, She's not doing the typical milestones,
pulled the pediatrician. By two they were like, yeah, we
need to send her. And by two and a half
she had the diagnosis of autism. And I was told
all about it. I was given resources, all the acronyms, IEPs,
ISPs BP, you know, I mean, the whole the boodle,
more than I could even deal with as a parent.
The difference was with Joshua, nobody wanted to call it
what it was. Nobody wanted to say, you have schizophrenia.
And I watched how in autism the ability to be
able to diagnose autism now even as a baby because
they're not looking. You know, I think we can do that.
I maybe doctor Hager agree with me. I think there's
symptoms that are predomal symptoms that we could recognize sooner
that we are ignoring. And if we could get these
kids during their first episode, or even before even tell them, Hey,
your kids kind of a little off, you know, I'm
a little bit concerned that they could be developing a
psychosist disorder or schizophrenia. This is what it looks like.
This may not be that, but you know, let me
know if you see these symptoms. I mean, think of
the difference if we just openly discussed that your loved
one is in trouble.
Well, my son's friends actually pointed out to us that
he shouldn't smoke marijuana because he's sounding bizarre and he's
saying strange things. And when he went missing, the friends
felt so guilty that they didn't say anything to us sooner.
So I think we're discounting the fact that we could
also be utilizing each other. You know, the colleagues, the
actual education of youth so that they can be on
the lookout for their friends for signs of psychosis. You know,
when we first saw my son with psychosis, he said,
you know, I'm not real, You're not real. As a mother,
I had no idea what to do with that. I
never heard that before. And it's shocking, And these illnesses
are shocking. Delusions, especially bizarre ones, are so disconcerting that
it feels like the floor's coming out from underneath us.
If we could give that shock value to the parents
and the youth in high schools or middle schools. Then
maybe we could be seeing some change.
What's really hard to reconcile is in this particular case,
I'm about to tell you everyone was doing their job,
yet the system still failed them. A seventeen year old
kid went out and did not come back. His mother
went to the police. The police said, oh, he's seventeen,
he's probably just it hooked up someplace, don't worry. One
o'clock in the morning, he was at gas station and
their credit card dinged. They called the police. They said,
do not let him go, we are on our way.
They got there. No kid, no police. So they go
to the police station and they tell them, well, he
was just sleeping the car. He wasn't a threat to
us or himself. So they let him go. So they're
still looking for him, and the next day he stabs
a lady a few times in her leg, winds up
in jail. Unfortunately, it took five years before it all
got worked out. Another sad fact, three to four years
he was in a state of psychosis before they finally
figured it out. From that very first night until it
finally got resolved within the court system, it took five years.
How do we change that dynamic.
We get treatment for those people asap with whatever tools
we have, and if we don't have the tools, we
make them make the tools.
In this case, he was in Psycho Coasts for three
and a half years, but they couldn't get anything done
because during that time he became of age eighteen.
Not right, you know, I want to get back to something.
I want to get back to something Linda said about
the college can tell the parents about the mental health crisis.
I assume it's not because of hippo. Must be because
of something else.
Because it's a bad law.
I forget what it's called, but there is, there's a law.
It's probably so we're in Michigan. One of our bills,
which everyone's supporting, would mandate the hospitals can share information
with families in the event of emergency or for continuity
of care. And because our Michigan statute is focused more
on history than what's happening right now, that history becomes
very important. So it's a combent upon hospitals now to
reach back to find out for families or what's from
go on, what's the history.
Actually, we passed a law in Arizona called John's Law.
That requires psychiatric screening agencies to obtain history from the families.
And that's one challenge we've learned is just passing laws,
which we have passed several in Arizona, is that few
agencies are following the laws that we've passed. But we're
working on that. We're working on the implementation. The other
thing that I think is a problem is that a
lot of agencies view being more strict with HIPPA as better,
and so Arizona even passed HIPPA Clarification Statute in twenty
sixteen to precisely allow and spell out that you could
give information to families if it was in the best
interest of the patient, and you know, all of those
things that HIPPA does allow. We put it in our
state statutes. But agencies are not following it because they
are adding their own HIPPA restrictions because it is viewed
as better to be more restrictive with privacy.
A lot of that's just fear of reprisal error on
the side of being too strict, and you can't get
in trouble with Medicare.
And I also think you brought up a really good
point Tony. You maybe like think you know, the big
picture of parents calling the police, and parents calling the hospital,
and parents calling, you know, to check on they're nineteen
to twenty five year old. You know, their first response
is they're eighteen. They can do what they want. I mean,
in the big picture, when you're talking to police who
have all sorts of behaviors of this age group, how
do they pinpoint what could be more alarming? So is
it education about schizophrenia and that this age group is
susceptible to this illness and that it needs to be
taken more seriously. And you bring up a good point
that I really hadn't thought of before.
The beauty of my podcast is I hear these stories
and by asking these questions, hoping that it impacts the
listener enough so they ask these same questions to the
people within their communities. If we can get people asking
these questions, maybe we can get the level of training
around conditions like gizophrenia in anisignosia. We have to find
a way to bridge that gap so that everyone gets
the help that they need.
And part of that is sometimes when we're calling the
police when our kids are this young of an age
eighteen to twenty four to twenty five, we don't even
know what's going on, so we don't even articulate it
very well. So some of it isn't even their fault.
Some of it's that we don't have the language yet
to even be able to effectively communicate what's going on
because the doctors aren't giving us the language.
So that leads me to this. There seems to be
a common thread of the unknown. Families don't know what
to do, and in many cases, law enforcement doesn't know
what to do either.
So how do we bridge that gap?
Well, in California, they don't have to do CIT training.
In our county, San Diego County, they do some other
kind of training. Usually Nammy will go in. They have
some people that will go in and help with the
training and talk about the symptoms. Talk about like if
somebody doesn't appear to be, you know, following your direction,
it's because they might be listening to voices in their head.
You know.
Basically, don't take it personally. Don't think they're trying to
defy you, et cetera, et cetera. But I'm telling you,
I don't think for many of these officers it is
really settled in. And I was talking to one officer
and they said, if you are not open to learning
about this, you're not going to take it to heart.
So we really need only officers who want to do
this kind of thing and that can learn about it
and really internalize it so that they can do a
really good job with it. I mean, we shouldn't have
to rely on officers, but we do.
Right now.
Again, the doctors need to come out. The doctors need
to be talking. They need to be saying this is
not acceptable, this is a neurological disease, this is not
acceptable because they don't listen to parents. I'm telling you,
I help people in our county and you can't believe
how many people they have tried so hard to get
their kid. It's awful to get their kid into care.
And you know when you're a mom or a dad,
but mostly the moms I find and you have taken
your little infant from the very beginning into the doctor
to keep them healthy, with their inoculations, their checkups, et cetera.
And then ride at eighteen, when many start exhibiting the symptoms,
you're told you no longer can do that, you no
longer can help your child. And then you have people
in your county. You call all these people when your
child starts getting sick, and they say, the best thing
you can do is kick them out of the house,
make them homeless. Perhaps they get picked up by the
cops and then put in jail and maybe they'll get treatment. No,
that's not acceptable.
I've heard that scenario so many times. Put your child
in the system. That goes against everything that we've ever
been told, and that was keep your child out of
the system exactly. So how do we fix that broken
trust and create a system that actually supports families instead
of overwhelming them.
I think a lot of it goes back to that education.
This morning, I was at a collaborative meeting with CIT
offices and so there were organizations there. NSSC got a
seat at the table, and all of the officers that
were there they really care.
And they want to make a difference.
And so I think it was you, Linda saying, you know,
we have to get to the offices that want to
be a part of this right and you know those
are the ones that should be on the CIT teams.
And it really it was encouraging for me to be
in that room and see so many people that did gear,
so I think it. And we brought oy broch Shaws,
had them spread out all on the table and they
were taking them. So it really is, you know, that
educational piece. And we've had one CIT officer he took
one of our brough Shaws at a community event we
hosted a couple of months ago, and he put it
on LinkedIn saying, this is the best thing that I've
ever seen, most so.
In the spirit of education. Education, education, And now I
wonder just wondering should we plant the seed in high school.
I think education in any form definitely helps. The only
thing I've been told about gizophrenia and INIX signosia is
that it happens over a period of time, and when
you're in that family dynamic, it's just a daily routine
and you don't really see it coming on until boom,
it's there.
I remember that was remember that with my sister or
our family normalized he oddities. Yeah, it's just the way
she was and eventually things fell apart.
Yeah, our school counseling staff and our teachers at our
high school should have known. The signs were easily recognizable.
They work with children of that age, they work with
teenagers there were so many clear signs of illness. Not
one person who should have recognized it had been trained
and could even tell us what was going on. Right
I don't work with adolescents. I only have my one.
There was no training whatsoever for any of this high
school staff on psychosis and recognizing it and any of that.
You know, they're trained to offer students to come on
in and if you're you know, tell us if you're
stressed out. There's no psychosis education happening effectively in high
schools right now. The other thing that I just wanted
to say on the last conversation was where is the
APA outrage? Why are mothers in T shirts taking PTO,
traveling our life and livelihood to sit for hours testifying
on bills. I've been writing legislation, I've been meeting with stakeholders,
I've been meeting with lawmakers. Where is the APA outrage?
Why aren't they fighting for state hospital beds? Why aren't
they fighting the IMD exclusion? Why aren't they fighting for HIPPA?
Why aren't they helping draft laws and meeting with stakeholders
and showing up and testifying. We've had a couple doctors
come way in on certain bills that had to do
with pretty much irrelevant things. But when it comes to
like treatment, where is the APA? If I was a
cardiologist and all of my patients were having bypass surgeries
and then being released to nothing without appropriate rehab and
dying in streets and my work wasn't effective, I would
be outraged. I would be fighting for Medicaid dollars. I
would be fighting for rehabilitation programs. I'd be fighting. I mean,
if my people couldn't even get a house, where is
the APA? Outrage? Someone please tell me.
I was gonna say, if people don't know APA stands
for the American Psychiatric Association, I absolutely agree. And the
point you are making about the teachers not knowing Rachel
I had maybe five meetings per year with my son's
IEP teams, and every year it was the same story.
They just said it was ADHD. They kept saying, you know,
he asked to have more AADHD medicine in order to
be handled. But now I know more that the signs
he was showing were precursors or to the psychotic illness,
and they just didn't see it because everything got put
into that category of ADHD. So I think schools do
need more training. I mean high school might be too late.
I think we need the middle school aged kids to
be talked with because in high school they know it all.
I can't remember who said it, but it seems like
everything now is coming down to the dollars spent. So
how do we get it across to them that spending
a little money could actually be saving a person's life.
So if we could get them thinking that, yes, we're
spending money, but in the end we're actually saving money
as well, how do we bridge that gap?
So again, just a couple things that I'm going to
compare again with autism. Most elementary schools they know when
something's going on with a kid that has autism. I
mean they recognize that, they're educated on it. They clearly
know what autism is. Now the middle and high schools,
you know, they do need to be They need to
be trained on what this looks like. I don't know
if it's nurse or counselors or to teach the parents.
But also the research. Until we start looking at it
before the crisis hits and see what the early signs are.
Until we start studying that scientifically, we're never going to
catch it like we do with autism. We're never going
to catch it early. And the interesting thing is with autism,
autism is going to play out no matter how it's
going to play out, especially for the severely autistic. Now,
if you're not as severe, you're going to have a
chance for complete recovery. It'sophrenia can have complete recovery if
we just find it in almost everybody.
We've had a great discussion today. I really appreciate every
one of you taking the time to give your input.
As we wrap this up, I'd really like to hear
from each of you on what's the one thing you
want listeners to walk away with from this conversation.
I wanted to give marching orders to listeners. There's a
bill in Congress Hr. Four zero two two that will
end the IMG exclusion and as a plus, would also
add that state need to be more robust with their
it's just an outpatient treatment. So this bill is being
voted on now. If you write to your congressman, you
can maybe affect change that would have lasting results.
Education start early, influence a generation to maybe care more
and understand what's going on. Some of them will have
an interest because they'll know that they'll have some experience
with people who are falling apart at their age.
I so agree with doctor Hagar because again in college,
I have gone back to my undergraduate college and urged
them to make sure that everybody, freshmen on in, professors,
the clinics have education about these illnesses. I think young
people are so much more open because so many of
their classmates are on medication. You know, they diagnosed a
lot of things early, not specifically schizophrenia. And I do
want to end on this note. With schizophrenia. I want
to say it is a very scary word and it's
not the right word to describe the illness. In Japan,
they renamed it integration disorder and so many more people
came in for treatment. Schizophrenia means split mind. I believe
it comes from Greek. This is not a split mind,
this is an integration whatever you want to call it.
I know there is a.
Big cadre of psychiatrists who are trying to get it
renamed because it isn't correct. So here we're talking about
these illnesses, they have the wrong nomenclature. And I think
that describing these illnesses in the correct way will mean
all the difference between if people can accept what you're
saying to them and listen and then reevaluate their ideas
about what these illnesses are and that they're treatable.
I think we need significant healthcare workforce development, and it
needs to happen in medical schools, in nursing schools, even
in you know, pre med and nursing programs are workfare
force does not understand serious mental illnesses. Our psychiatrists are
not trained appropriately. We have, especially in community mental health,
where new graduates of nursing or medical school are placed
with the sickest patients in community treatment and really don't
know how to manage psychosis, ran asygnosia. It's really an
incompetent workforce right now, and we need to develop that
whole system from the ground up and get more state hospitals,
more academic programs, more skilled psychiatry residency programs, and all
of it.
In memory of my son Joshua, I think I would
like to choose that psychosis needs to be treated as
the medical emergency, that it is more like a heart
attack or a suicide attempt, and we need to treat
that illness and it needs to be considered a crisis.
Well, Crystal kind of said what I was going to say.
So I was going to say that we need policy
is that are going to change from a standard and
neglect to a standard of food care and also to
treat psychosist as a medical emergency.
It is well, I'm on the civil justice side, and
so I would urge policy makers across the country to
adopt the four principles adopted by the National Judicial Task
Force back in twenty twenty two. That begins the first,
having earlier intervention before someone is in crisis, before someone
needs hospitalization. Second, all patient treatment should be the default
remedy in mental health proceedings. Third, there should be procedural
reforms to simplify the process for going forward. I mean,
for example, a psychiatric nurse practitioner with experiences in psychiatry,
I'll be able to testify and probate proceedings. And then finally,
this might be the hardest one, is having a pathway
for emergency psychiatric assessment and intervention. As part of a
group that to look at this, and basically, someone could
be certified to require care and then for seven days
they could provide I care over objection, and after seven
days if it's still a problem, then you would petition,
but help with those four pillars, we could intervene earlier
and do a lot better job.
All good points.
I really appreciate all of you taking the time to
do this. What we covered here wasn't just a conversation,
It was something real, something meaningful. I truly believe that
anyone listening is going to come away with a whole
new level of understanding because of what you brought to
the conversation.
Thanks Tony, thank you so much.
Thank you, Tony.
My pleasure, Thank you, Tony, and good work.
Thank you, Tony.
Appreciate your time.
Thank you for having us.
We appreciate your work. Tony.
Oh it's been my pleasure. Thanks again. A big thank
you to our guest for sharing their journey. If today's
conversation helped you see the world a little differently, then
we're doing exactly what we hope to do. Until next time,
keep believing, keep learning, and most importantly, keep asking yourself
why not me?
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