NSSC: Voices of Change Part 2: 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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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 Streith, and Ann Cochrane. This topic matters.
It touches families, friendships, and entire communities. This is episode
number two of a 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
episode two with you, Crystal. After everything we've discussed in
part one, I know you have some insights to share
what stood out to you.
Yes, I was going to respond a little bit to
everything as fast as I can here. So when they
were talking about jail and not guilty by reason of
insanity again, Arizona has a bit of a problem, especially
in Maricopa County. We're kind of the wild West out here,
so our rule eleven because they did not want to
pay for hospitalization to restore people to competency. They do
it really poorly in the jails, and especially if you
have a violent crime, you will be even if it
takes years and years years restored to competency, even on
some of the better medications, only to be taken off
those medications when your court is done and you're competent
and you have stood trial. So we have problems in
our jail system with that. Also talking about anasygnosia, I've
done a few things since we talked last Tony, and
one of them was I've gone to a nursing because
I'm a psychiatric nurse, so I've gone to a nursing
conference with I want to say, it had a couple
hundred doctorate level nurses. I was probably the least educated
person in the room, and I stood up because I
just couldn't take it anymore, and I asked if anybody
knew what anasignosia was. So the people that were in
the room were doctorate level nurses for nurse practitioners who
were educating nurse practitioners, and not a single one of
them knew what anasygnosia was and so I educated them.
And the good news is I did get asked to
speak in South Carolina on these topics and is going
to get to join me. She didn't know that yet.
So again the education in the schools is really lacking.
And then I just finished classes on family peer support
training or something of the sort, which is really interesting.
But what they said was in this class is in Arizona,
and this is again particular to Arizona. I think in
the nation, people with schizophrenia have a twenty five year
less life expectancy. In Arizona, that's thirty years. So I
did the math and I looked up average life expectancy
is seventy nine and if you minus so, you figure
a person gets schizophrenia in their twenties, right eighteen to
twenty five, and then you don't get diagnosed for another
few years. So the average age expectancy of somebody with
schizophrenia is only forty nine. So their life expectancy after
diagnosis of schizophrenia or psychosis disor is only twenty years.
We have people that have lived longer than that with cancer.
They lived that long with Alzheimer's disease. They lived that
long with Parkinson's disease, even lu Gerrig's disease, And we
don't have the life expectancy with schizophrenia, which is a
treatable disease with the proper medication. And one more thing
is the gap that we haven't talked about yet in
the system, which has to do with the first episodes,
which is what my son went through. So when I
went to seven different agencies to try to get my
son held, none of them took psychosis seriously. If he
did not say he was suicidal or going to hurt somebody,
they did not find his condition worthy of treatment. Psychosis
wasn't even though he had just not too long before
that pulled a knife on his father, because he didn't
do it right then. Even though we have the good laws,
the interpretation in these intake departments and by doctors is
not considered during psychosis as the emergency that it is.
And so that was a big gap in Joshua's case,
which led to the death of his father and then
eventually his own suicide.
That really underscores how serious and urgent this topic is.
And as hard as that story is, unfortunately it's not
the only one, and the tough part is some families
carry that weight with them in silence. Laura, can you
tell us about a situation that you heard of? And
I think this is going to give people the reasons
why these families often keep their experiences to themselves.
Yeah.
I mean recently, I was privileged to be in the
presence of someone who told me one of the worst
cases of psychosists that I've ever heard, and he was
mentioning that his niece had gouged out her own eyeballs
with brush in our state of psychosis, and the family
is so broken that they're not coming forward.
It's not in any of the newspapers, You'll never see
it online. And these are the kind of stories we're
fielding at National Shattering Silence Coalition, where we're trying to
pair the actual tragedies with the mediums to educate the
public and specifically the legislators who are making these choices
about laws and how policies are going to be designed.
We have to hear the stories, but the parents are
too traumatized and doing tony telling these stories getting them
out online. I was talking tonight with our families of
the State Hospital and they were so proud because one
of their members was on your show and that everybody
wanted to hear the show interview, and it just gave
them all some hope because, like David said, you know
these forensic places that house these patients, they're kind of
like no man's land. No one understands that the people
are in there not because they're bad people, but because
they are ill people. The crime was only committed in
a state of illness, not a state of immorality.
I think that's a very important thing that people need
to understand, that this is a state of illness, not
a state of somebody just being immoral. I think that's
a huge point for people to understand, because when we
misinterpret illness as behavior or choice, it changes how we
respond and often it lowers the level of care people
actually receive. And that brings us to a bigger question,
and are we as a system and as a society
unintentionally accepting a standard of care?
Yeah?
So I think that somehow, as a society, we have
come to accept a standard of neglect rather than a
standard of care for people with severe mental illness. And
I think it's been mentioned many times here. It really
is that educational peace. I've been working with some the
Association for Prosecuting Attorneys on something we're trying to do together,
and we were talking about the Matt and Michael stickcase
who you had on your show last year, where Matt
killed his mom not because he was a bad person,
but because he was left in psychosis. Well, I reached
out to Michael, Matt's dad to see if he remembered
who the prosecuting attorney was because we were perhaps going
to get that person to speak. Well, he shared with
me that the DA at the time who wanted Matt
to be convicted for murdering his mother, he had a
very different take on that several years later because he
experienced it with his own daughter who stabbed him. So
his whole you know, outlook on you know, psychosis and
mental illness had changed because of that. So I think
it really is, you know, helping people to understand and
to educate them so you know that we can change
these policies and that they will you know, support them
as well.
It feels like as a society, we tend to think
it's okay until it's not okay in our own family,
and when that moment comes, everything changes. How do we
change that mindset. How do we get people to recognize
that this could happen to anyone, any family, at any time,
and we need to be engaged and part of the
solution before it comes personal.
I think you're doing that, Tony. By bringing stories, you
are doing exactly that because people are understanding, Wow, this
could happen to me. And the more that families speak
out about their stories, you know they're going to, you know,
understand that their parents, just like you know, any one
of us here could be And it's not because our
kids were raised bad or you know, they have character flaws.
It's because they have brain nalysis that they did not
ask for. So really is that education? And I think
you're doing a great job and helping us spread that wide.
Well. I really appreciate that. Now, Linda, how do we
start changing perception, moving people from surface level understanding to
a deeper, more accurate view so that real cultural change
can begin?
I would say too, there are so many facets of
things that we can do. So as an old undergraduate
anthropology major, I learned how hard it is and how
long a process it takes to change culture. For instance,
three years ago, I met through my book club with
a freelance writer, and we work together to get an
article put together on anasygnosia because that was one of
my primary advocacy goals because most people don't know what
that is. And we got a placement in People magazine,
which has eighty one million subscribers or viewers or readers,
and my friend Eric Smith and I Eric said sure,
I'll do it, and then I called doctor Amador and
so it featured Eric and doctor Amador talking about antisygnosia.
And so I feel like we educated a lot of
people in that one area. We need to keep doing
that because it's like a drop in the bucket. Every
time something like that comes out, we have another movie
or whatever that demonizes people that have these illnesses and
make them sound like monsters, and you know, if you
have the illness, it's very stigmatizing. I don't usually use
that word because I find in these diseases discrimination is
more what it is. And people weren't seeing these folks
on the streets untreated. I do not think that they
would think that those people were, you know, bad, if
they understood, you know, that they're sick. And also time
they'll people will say, well, why the heck, don't they
get help because they can't.
When I first started doing this podcast around serious mental
health illness, I'll be honest, I didn't understand it at all.
My first reaction if someone did something wrong was simple,
put them in jail, threw away the key. Over the
past year, talking with people like all of you, hearing
real lived experiences, that perspective has changed. Now when something happens,
I find myself asking a different question. Is this a
bad person because there are bad people out there? Or
did the system fail them? And that leads me to this.
When we start to recognize that many of these situations
are actually systemic failures, how do we as a society
move from awareness to action. How do we collectively say
this is not working it needs to change. So how
do we actually start to make that change.
It's so complex and so siloed. If there was more
coordination between all the different agencies and people that service
people with these illnesses, and more accountability and outcome measures
that really show what is being successful. And by success
I mean getting people stable and in recovery and living
their best lives. That's my measurement of success. But a
lot of these programs and things that we have have
different success majors, measures that are not applicable to what
we want the outcomes to be. So that's one thing.
Yeah, that makes total sense.
Yeah, So I think the other thing is it has
to be done at the state level because every state
varies in their laws, and that's something that we're trying
to do at NSSC is trying to establish presence in
each state. And I'll give you an example. In Alabama,
they connected that group is fairly new. I think we
had two members of Alabama. We now have over twenty five,
and they connected with the case where a woman was
trying to get her sonhow they were at the psychiatrist,
oiled for the person to be sectioned, called the police.
The police came. It was supposedly a cit officer came
and said, no, I'm not going to take him because
the hospital is just going to let him go. So
in the meantime, the mom was running, you know, from
county to county because her son had you know, crossed
county lines or whatever, and a life was taken. So
our state director reached out to this mom and now
they're holding our entire symposium on this. It's the first
time she's ever speaking about the incident since it happened,
and they're trying to have a law enacted as well
so that something like this never happens again. This is
a totally preventable tragedy. The psychiatrist wanted this patient committed,
but the police officer didn't think that he needed to be,
didn't take them and as a result, a life was taken.
That's said on so many levels now, Judge mac often
a perception that mental illness isn't a primary issue within
the court system. From your experience, is that really the case?
How are court's beginning to recognize and respond to it
as a central challenge. Do you see the courts starting
to prioritize it in terms of strategy and resources?
You know, I think it might be underestimating the public
interest in this area. A couple of years ago, the
Mission Spame Court decided to set up a strategic planning
process and in that process we did a survey of
our internal users, our external users and gave them twenty
problems and the eternal The external and internal users all
identified mental illness and substitutes as the number one issue
affecting the courts. So the Michigan Span Court. So okay,
our number one strategic priority for last year's behavioral health
We hired a behavior health administrator, which was one of
the recommendations of the National Task Force. And more states
are doing that now. I know Illinois. Did I assume
Arizona as I would have done on that one about California,
But I think there's a growing recognition.
As we move into legislation. One of the challenges we
keep hearing is bills can pass with overwhelming support in
one chamber and then stall or die in the other.
How do we fix that disconnect? How do we get
both sides House and Senate working together so when there's
clear broad support for something this important, it actually moves forward.
Well, you're not going to change that dynamic, but what
you can do is make sure that you are aligning.
You align yourself with the stakeholders that matter to each chamber.
In Michigan, they care, the House cares about the Chamber
of Commerce, and you send it as more to other
other people like hospital and go for it so you
get them both on your side because you can. You know,
I've spoken to the Chamber and I said, this is
your interest to fix this problem because you're suffering from
this problem just as much as anybody else. And you
get all these takeholders to understand what their stake is
and what they're missing out on and what damage they
incurred because the problem is not being solved. I mean,
in Michigan, what the sponsors of the bill in the
House was really the most conservative member of the House,
which is not my political leaning. On the set aside,
we had a fairly liberal Democrat who's a sposor of
one of my bills. So that does mean there'll be
a little battle going on in the House and send
over it wh'll get credit for the bills. That's always
a tricky thing, but I think you build a coalition
and that's what can break down the barrier.
Also, I would add to Judge Max that you always
bring it down to how much money the legislator is
going to save his constituents are her constituents. And the
thing is that if you treat these diseases correctly up front,
you are going to save a ton of money, because
when you jail somebody, it costs so much per day, hospitalize,
et cetera. And I used to work for a US senator,
Believe me, money money talks.
Yeah, I'm so glad you brought up saving money. We've
seen models like the one in Florida that invest in
treatment upfront and actually save millions on the back end
in jail, court and system costs. So if this ultimately
comes down to dollars, how do we effectively communicate to
lawmakers that's spending more on treatment now isn't just the
right thing to do, it's the financially smarter decision.
Well, when I'm testify in front of the House of
the Senate, I pointed out that are of the fifteen
thousand or nine thousand people who've been petitioned in Wayne County,
seventy six had at least ten petitions over five year period.
That are the highest users. In one year, these seventy
six people, we spent three point three million on hospitals
and one point six million on incarceration. Five million dollars
and for that we got nothing.
Wow.
Now, let's add another layer to this homelessness. We're seeing
many individuals with serious mental illness cycle from home to
hospital and then back onto the streets, often after just
a short stay, without the support they need. How do
we break that cycle? What needs to change so that
people don't keep falling through the cracks and ending up
back on the streets.
Well, we do know from the data that a good
AOT program will reduce homelessness. So that's been proven in
well Jesse County, Michigan. New York has that data, and
I think Ohio has that data as well, So we
know that if you have that kind of program you
can reduce homelessness.
That's definitely encouraging. So now we keep coming back to
this revolving door, people getting brief care then ending up
right back where they started. And part of that conversation
is AOT, which unfortunately not every state has fully embraced. Linda,
what are your thoughts on this, what's your perspective, What
role could AOT really play here?
Yes, because in our state they gave an option to
the counties to actually take up an AOT program, and
the counties that did take it up it has turned
out to be completely voluntary, which is worthless for the
targeted population, which is like just a small percentage of
the people who are the sickest. So you've got to
get these people in through another means, whether it be
a conservatorship, a guardianship. In some places it's called or
for what I call mandatory life saving treatment. I know
a lot of people call it coercive, but no, it's
actually life saving treatment because every day in psychosis is
a matter of life and death. When you're out on
the street homeless. This is something that I don't really
think people understand as we were talking about that these
people aren't lazy, They're not just choosing homelessness. A lot
of people with serious diseases like this, they turn to
street drugs, they turn to alcohol to stop the voices,
to stop the hallucinations. So it's a co occurring. It
can be a co occurring thing. But yeah, you're not
going to get these people off the street unless you
basically it's mandatory. You say that's it, you need treatment,
We're going to get you off the street. We're going
to help you that sort of thing.
Now, we keep hearing about how different states look at things.
What does Arizona look at it? From their standpoint?
In Arizona, we have different populations that I look at.
So we have individuals that are developmentally disabled, individuals that
have Alzheimer's, or elderly population that require like nursing home
type care or assisted living in some fashion. And then
we have the seriously mentally ill. So we have three
different populations. And one of the things that we've noticed
is that in the two populations of the developmentally disabled
like autism, and the population of those that have let's
say Alzheimer's disease, we can get federal dollars. There's a
more inclusive program for those two populations. And with the
seriously mentally ill, we have what's called that IMD exclusion,
which keeps us from being being able to get federal
dollars to support this disabled population in housing who need
extra supports. They aren't capable of housing themselves and feeding
themselves and all these things without a layer of support
with them. And so one of the things we could
do federally is reverse the IMD exclusions so faderal dollars
can come in to do more wrap around services for
the sickest of our members of our society that really
required long term care.
And this IMD thing that Crystal's talking about, this is
one of the most discriminatory laws against the populations we're
fighting for ever. It was put into the Medicare and
Medicaid Act of nineteen sixty three or somewhere around there,
and it limits the number of beds that AIMD, which
is helped me out here, guys, institution of mental diseases
can have to service people from twenty one to sixty
four to sixteen beds. Sixteen beds, and we don't limit
beds in any other hospital treating anybody else. The whole
purpose of it was to keep people from building new asylums.
What it's done is locked out people from getting the
treatment they need. And it's not fair, it's not right.
And I have heard in California of places that actually
build two facilities on their property of sixteen beds and
sixteen beds. So it takes the construction costs and basically
makes it much more expensive because you can have what
is it called when construction is done in a more
efficient way.
I can't think economies of economies of.
Skin, Yes, economies of scale thanks reach.
So the other problem is that it doesn't even just
extend to the number of beds in a facility. It
goes all the way down to the level of institutional care,
and so that includes things like assisted living. That is
actually the bigger damage that's being done. So there is
no long term care. There are no We don't have
Alzheimer's board equivalents, we don't have group home equivalents funded
by Medicaid dollars. It's really the home and community based
services and long term care, not even just the hospital stay.
It's all forms of institution, even locked, unlocked group homes
that cannot get federal dollars because of the home and
community based carve outs that happened to developmental disabilities and
elderly and physical disabled but did not get given to
serious mental illness.
We're going to pause right here at the end of
Part two, but this conversation is far from over. We've
covered a lot of ground, and in our final episode
we're going to bring it all together, focusing on solutions,
where we can go from here and what real change
can look like. So join us in just two days
for Part three, the final chapter of this series. You
won't want to miss. A big thank you to our
guests 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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