Leslie Carpenter: Breaking the Mental Health Crisis Cycle

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and a better understanding for autism around the world. Hi,
I'm Tony Mantur. Welcome to Why Not Me the World?
Humanity over Handcuffs the Silent Crisis. Special event us today
is Leslie Carpenter, co founder of Iowa Mental Health Advocacy
and a dedicated lobbyist for her state legislature. She also
serves as a legislative advocacy manager at the Treatment Advocacy Center.
With her wealth of knowledge and experience, we're thrilled to
have her here. Thanks for coming on.
You bet, I'm happy to be here.
Can you tell us what led you to get involved
in what you're doing today as an advocate for mental health?
Well, my husband and I have two adult children, one
of whom lives with a very severe Skitzo effective disorder,
and he's been sick for about nineteen years. So We've
had extensive experience navigating the whole mental health system, if
you can call it that, you know, meeting more barriers
than we did help and so eventually I decided to
retire from my career as a physical therapist to spend
the rest of my life working on improving the system
so it'll help the next person who gets sick more
than it helped our son.
Does your company primarily operate on a regional level or
does it have a national presence?
So I wear two hats with one hat. I am
the co founder of Iowa Mental Health Advocacy, in which
my husband and I basically created a website, created this agency,
which is really just a mom and pop shop, and
from that I have evolved into being a lobbyist at
or state legislature here in Iowa. But I've also gotten
involved in a lot of community work, committee work, statewide
work to work in various ways to improve the mental
health care and delivery system in Iowa. And then, with
a separate hat, I also work for the Treatment Advocacy
Center for about the past year and a month on
a part time basis as their legislative advocacy manager, and
I track legislation across the whole country, in all fifty states,
in the federal government, and then help advocates to either
pass or hopefully block bills depending upon how they affect
the treatment of people with severe mental illness.
How would you approach reforming the legislative system given that
we recognize the need for change to improve conditions for everyone,
changed takes time, So what initial steps would you take
to kickstart the process and encourage more constructive discussions so
we can create a win win situation for everyone involved.
Yeah, that's a really good question. So for me that started.
My first step was with research. I did extensive reading
of books related to policy in this area to understand
exactly that question. Where do you start, right Because it's
not all about fixing laws, it's not all about education,
and it's not all about just changing practices. It's all
of it. So I did extensive research and then just began.
So I kind of think I break it down into
a couple different ways. One is, some of the work
has to be community based. Some of the work needs
to be getting better collaboration and cooperation and communication between
the players and the system in your area to work
with each other to help plug the gap, so where
people are falling through and not getting care. So that's
one level of work that needs to happen and I'm
very much engaged with here in Iowa City, Iowa. Another
level of work is what can happen at the state
level in terms of both getting improved laws so that
the law allows for some improved practices, but also in
terms of influencing the education of the players in the
system at the state level to do again high level communication, collaboration,
and coordination of care. Because when we're talking about the
individuals with the most of your mental illnesses, it's not
just busting stigma. It's not just getting equity or parity right.
It is about doing the hard, intensive case management that
needs to happen around some of the people that are
going through the revolving door churn to stop revolving door,
catch them and individualize their care so that they are
not left to suffer. So some of the work is there,
and then, of course at a bigger level, some of
the work is national. Some of the federal laws also
have to change, and attitudes so it's.
Big, Yes, I totally agree with you. Things do need
to change. Attitude is a big ingredient of helping change
in circumstances like these. It's a regrettable reality that as
a nation, we frequently fail to acknowledge the gravity of
an issue until it directly impacts our own families. Only
when it strikes close to home does it rise to
the level of a pressing priority. The challenge, then, is this,
how do we bridge the gap in understanding between those
who remain untouched by these experiences and those who deal
with them daily. We need to find a way that
we can bring our collective minds together to drive bigger,
meaningful change on a national level. What's the best way
that we can go about getting this accomplished.
That is exactly the question that is the whole crux
of the problem. It is a lot easier to advocate
for little kids for anything that they need, whether it's
autism or cancer or whatever it might be, right, it's
a sympathetic group to advocate for. It is much harder
to get people to care about people with severe mental illnesses.
And what it takes is sharing stories. It takes letting
these people know that most of these people that are
sick started out the same way that all of our
kids did. They started out in normal families. They grew that.
Many of them were highly educated, highly talented kids who
had an nonset of a severe mental illness during their
late teens and early twenties that came and robbed them
of everything that they had before. And you know your
question about how do you get people to care if
it doesn't personally affect them, that's a much bigger question, right.
How do we get people to care about anything that
doesn't affect them? That's part of our society today. It's
harder to do that, and the way that I think
we need to approach it is to be constantly getting
out there with the stories and constantly engaging on it
at every single level. And I will tell you that
when I attend events, legislative forums that are around mental
health and I'm sitting there next to somebody who is
not personally affected, that gives me hope. Right. But we
need a lot more of those people if we're really
going to create a social movement and get the change
to happen.
You're absolutely right.
I recently had a guest on my podcast, a great
guy from London, Big, Healthy, Autistic and ADHD. He made
an interesting point when he tells people he's autistic, they
often look at him and strangely say, you don't look autistic.
He went on to say, if I had told them
I had cancer, the response would immediately shift to, oh,
how can I help? How do we help people understand
that everyone needs support and empathy even when their struggles
aren't visible. What can we do to encourage others to
ask how can I help? No matter what it is
they may be dealing with?
And that brings up a very good point. There are
people walking around with schizophrenia who are functioning quite well,
and I'm so grateful for that, and we're very grateful
when they bring their voices to the work. But those
aren't the people that we're really needing to advocate for,
right We're needing to advocate for the homeless guy down
on the corner who's ranting at the birds and who
doesn't have the right level of clothing on and is
starving and is unable to take care of his own
needs in any way. How do we get people to
see that this is somebody that is there not because
they're choosing to be there, but because they have a
brain illness that they never asked for. And we have
failed to step up to help them. That's the challenge.
You're right, it is.
I think a big thing is getting more information out
there that shows them if someone has a psychotic episode
that it doesn't mean that it's a death sentence. They
can get help, turn it around and have a fulfilling life.
That is exactly right. The treatments that are available now
are so much better than they were even just ten
years ago, and certainly better than what they were sixty
years ago when we began this massive deinstitutionalization movement. Right,
it has evolved. It's not as far along as we
would all hope, but people can do very well if
we are able to keep them in treatment on a
consistent basis.
If we reflect on how our understanding of autism and
mental health has evolved over time. Back when autism was
first identified, I think that was around nineteen ten, it
was seen as a psychotic disorder, and the treatments were
often harsh because people didn't fully grasp what it was.
By the fifties and the sixties, we started to see
some shifts in perception, but it wasn't until the nineties
and beyond that things started to change. I see a
similar pattern with mental health. Over the last twenty and
thirty years, we've moved away from just labeling someone as
the odd one out toward recognizing they might need support. Now,
what have you seen since you've been doing this in
the last twenty or thirty years where you've seen changes
making you feel we're headed in the right direction.
That's a really good question. So part of the issue
that we have is that so many people don't understand
about psychosis and how it's a very altered perception of reality, right,
and that makes it hard for somebody to voluntarily agree
for treatment, and they don't understand that. A certain percentage
of these people also have an a signosia where they
don't know that they're sick because the brain has changed.
Because of the brain illness itself, that makes them unable
to engage in treatment. We are doing a better job
of getting the education out there, not just to families,
but also to providers who unfortunately there's a lot of
providers who don't understand that, but also to the general
public and especially at legislators. And I will tell you
that it seems that the tide is starting to turn,
where we are seeing states start to make changes understanding that.
New York City is a wonderful example. You know, they
are doing things to pry to provide compassionate treatment to
people that have been unfortunately neglected and left on their
streets for far too long. California is another example where
we're starting to see the transition with the introduction of
the care courts, who allow for better ability to get
help to people who don't know they're sick. We're starting
to see that happen more and more across the country,
and we're starting to see states take actions like adding
state hospital beds, removing certificates of need requirements to get
a new psychiatric hospital built, to start to re supplement
the need for cute care settings for people in psychosis.
And we're starting to see the acknowledgment that we need
more long term permanent support of housing of various types
for people with various needs. And that's all very encouraging.
Well, that's very good to hear. Now.
One of the things that I hear consistently from varying
people that I speak with is the person could have
a brother, a sister, or a son or daughter, whoever
it might be, that is having some serious issues and
they might know they're not completely right, yet they would
not allow them to take them to the hospital to
a doctor to see what's going on. How do we
get that changed so that if a person needs to
step in to help someone, they can actually do it
without having anything it comes back.
At them, right, That's the bigger challenge. I call it
the sick person in the basement syndrome, where everybody in
the house knows that the person is very severely sick,
but we can't get them help because they won't voluntarily
agree to it. And unfortunately, our laws don't allow us
to step in in many states until somebody becomes a
danger to themselves or others. Meanwhile, there's a huge amount
of brain damage happening to that person while they're actively
in psychosis. So how do we change that hits twofold.
One is changing the laws to allow us to recognize
psychiatric deterioration as a reason to allow for involuntary assessment
and treatment in the first place. But it's also education
to law enforcement, to psychiatrists, two ed doctors, right to
all the players in the system that the laws, many
of the laws allow us to intervene much sooner than
what we currently do. In terms of how it's practiced,
in terms of how they do that, and so much
of that is fed by the bed shortage. So adding
more beds and adding more education, and to some extent,
improving the laws, all of those things should allow us
to be able to intervene sooner and provide medical care
in a way that makes medical sense, not bound so
much by the laws.
In a society where perception drives so much of our
response to behavior, how do we tackle the challenge of
reforming the legal system to better address someone with a
mental health crisis. Specifically, when someone is experiencing a psychotic breakdown,
the knee jerk reaction from many, based on fear and misunderstanding,
is to see them as dangerous or bad, pushing for
jail or lifelong incarceration, basically throw away the key. How
can we bridge the gap between the public perception encouraging
a legal framework that prioritizes understanding and treatment, we have
a better situation between the legal system and the people
that are facing the legal system.
Yeah, it's a really good question, And what I'm excited
to tell you is that there are changes in the
legal system. In fact, the courts and many of the
judicial commissions that are in each of our states being
led by the National Center for State Courts. They are
ahead of us. They are working on improving the legal
systems ability to be agile. And if somebody has committed
a very minor crime, maybe they slept in the wrong
place and they got arrested for being homeless and they
get taken into jail. Right, so the charges like trespassing
allowing for assessments to happen. Okay, why did this happen, Oh,
the person's mentally ill. Let's divert this person to treatment
and drop the charges. Right, And that recognition is starting
to happen among the legal professions as well as the
legal systems. Is it a lot of work still to
be done in this case. Absolutely, But they're actually a
little bit ahead of us. They're ahead of the medical
system in recognizing this. Actually.
Unfortunately, the next step often comes when someone acts in
a different way that draws legal attention. I've spoken with
several people who tried to involve the police. Police either
couldn't or wouldn't step in. Then, after hours or even days,
or where the time frame may be, that person winds
up committing a crime. In one situation. A person stabul
lady in the leg it was just serious enough to
land them in the criminal justice system, and from there
it spiraled downward. How do we make the point that, yes,
he did something wrong, yet it stemmed from mental health
struggles and a need for medication. If he could have
gotten the help and treatment and support to get him
back on track, the outcome could have been a much
different outcome that would have benefited everyone.
So again, I'm happy to report to you that there
are ways that some of these jurisdictions are trying to
act on this. Obviously, sometimes they will refer the person
for what's called competency restoration. Unfortunately, we have too few
of those beds as well in most of our states,
and so people end up waiting to get to that.
And competency restoration is not the same thing as treatment.
It is just providing some medication and court classes to
get the person well enough to be able to participate
in their own defense. Now, what I will tell you
is that there are more criminal mental health courts now
than there used to be. It would be left up
to the jurisdiction to decide whether or not that person
who stabbed somebody in a lag would be considered dangerous
enough where they felt like they had to handle that
through the criminal system and keep the person secure. Right
if it were less than that, and the person weren't
found to be at risk for hurting somebody else, there's
a potential to potentially either get them into a mental
health court treatment program or dismiss their charges and get
them referred to an AOT or assisted out patient treatment program.
In any of these cases, I think the basic thing
that has to happen is the recognition that it was
the untreated illness that caused that incident to occur in
the first place. It was not endemically the person being
a bad person. And that's where we still have work
to do, because once we get that to be understood,
then it's easier to get these systems to work together
better to get somebody treatment. And even if the person
is charged and found guilty and placed into incarceration, they
still deserve to get treatment while they're there, and the
opportunity to do things to help make it easier if
they get back out, if and when they get back out,
so that they aren't just released from a jail or
a prison with no connection to treatment. Because that doesn't.
Help anybody, absolutely, So it still comes back to education.
It does. So much of it is education.
Most organizations seem to have opportunities, whether it's events, discussions,
informal gatherings where people can come together, connect and hopefully
get more information on how your organization can help them.
Now to take it a step further, how do you
extend that engagement beyond just your organization? Because in my mind,
and correct me if I'm wrong, it feels like there
is just not enough organizations out there doing this. How
do you see that expanding and evolving?
I agree there's not there's not enough. How do we
do it? We get ourselves invited to professional conferences of
various types, get ourselves to you know, judicial commissions, get
ourselves to you know, the attorneys Association meetings, get ourselves
to provider meetings and you know conferences. It is a
huge amount of work that will take many different people
coming together to work toward that necessarily all in the
same way, but we all need to be working on it.
Yes, how much outreach do you have working with first
responders so they can identify themselves at the initial point
of contact. The more training they have of course to
gain a better understanding of the situation. They only have
second set times to react, so this gives them a
chance to quickly assess whether it's an autistic meltdown, a
mental health crisis such as psychosis, or something else entirely different.
First responders often don't have time to sit down for
a lengthy discussion, so we need to equip them with
the tools to evaluate situations rapidly and accurately. As you know,
this can de escalate the situation effectively and prevent it
from becoming a bigger issue.
Correct, Yeah, and worrying my Iowa Mental Health Advocacy HAT
I have been speaking for several years now during the
crisis intervention trainings that happen here locally in our county.
I've also started doing it at other counties through the state,
and I will tell you that there are a lot
of mental health advocates, especially the moms of people with
severe mental illness and peers who live with illnesses, who
go out and speak at these trainings to help give
them both the patient and family perspective to provide that
very education. Now, thankfully, there's a lot of crisis intervention
team training going on around the country, as well as
having mental health responders or co responders, and we fully
support all of those models because you're right, if they
can understand and de escalate it in the first place,
you can avoid that whole criminal legal system and have
them help get the person into treatment. That's really critical work,
and I will tell you that there's probably hundreds, if
not thousands of people across the country engaged in doing
that education and work every day.
I've heard police precincts often have limited time and budget
for training officers. Despite these constrains, have you noticed an
increasing willingness for them to invest in CIT training because
they've recognized as necessities.
Absolutely absolutely. I live in a county in Iowai live
in Johnson County, Iowa. It was the first one to
start getting involved in doing this, and now there's been
a huge a lot more state support for it in
terms of providing funding from our MHDS regions or Mental
health and Disability Services regions to help facilitate helping local
police precincts being able to afford to send one or
two staffers to a training without completely depleting their own staff. Right,
It's complicated because they have to be able to do
that for forty hours, and I will tell you that
once they are doing it and they see the effects
of it and the positive outcomes that happen because they've
got everybody trained, it really does help. But it takes
time to build up enough of those trained officers any
one location so that potentially you have people that can
respond to more than one at a time crisis as
well as throughout the three different shifts that happen in
terms of a twenty four to seven cycle.
Now let's take it past the first responders. Many times
before the police get involved, there is someone that's on
the other end of nine to one one. Now they
need training just as much as the police, so they
can get as much information as they can from the
phone call to give to the police while they're in transit.
This way they know whether it's an autistic meltdown, a
serious mental health issue, or something else. Are they included
in this training along with the police?
Correct? And luckily I can tell you locally, these people
are included in the yearly trainings that happen. So all
new people coming into these roles go through that training.
And I'm seeing more and more of that happening across
the country. We definitely need that in addition to trying
to get more people to call nine eight eight instead
of calling nine to one one when that's appropriate.
That's a good thing to know. I think a lot
of people don't eat and realize that that number even exists.
Correct, But using nine eight eight as your first phone
call is a way to hopefully encourage more of a
mental health response as opposed to a law enforcement response.
It increases your likelihood that that will happen.
Yeah, And I think many people fail to recognize that
an individual struggles such as autism or serious mental health
challenges extend far beyond the person themselves. These conditions impact
entire communities, families, friends, law enforcement, healthcare professionals. There's such
a web of people that it extends to. I think
we have to acknowledge and tackle that broader ripple effect,
not just the individual experience, because again, this is a
situation that just impacts so many people in the.
Community, absolutely, and it is a major impact on all
of those people. Better care we can provide early on,
and the more consistently we can keep somebody in that treatment,
the less of a detrimental effect there is on everyone.
And most especially that person.
This has been a great conversation with a lot of
good information. Now in closing, what would you like to
tell people that you think is very important that they
need to know that can help them moving forward.
It's important to hear that we need to have providers
providing more hope to people when they're first getting sick.
All too often we hear from families where they get
told their loved ones sick. The loved one who is
sick gets told by the doctors, oh, you've been diagnosed
with this. You're going to be taking medication for the
rest of your life. You can't possibly go to college now.
Da da da da da. And that's really harmful because
I think the most important ingredient for the person who's
been diagnosed is hope. They need to understand that if
they are engaged in treatment and they do the work
with the treatment providers, beyond medication right and they can
still work towards going to college, having a degree, having
a relationship, getting married, having kids, all these things are
entirely possible, and too few people get told that when
they're first diagnosed, and we as a society need to
do a better job coming around them and supporting that hope.
Yes, hope is very important. I've spoken with several people
who have faced overwhelming challenges, yet somehow they've managed to
turn their lives around and are now thriving, proving that
it's absolutely possible to live a normal life.
Extremely possible. We just need to do better providing all
the supports, even sometimes on an involuntary basis, when that
is absolutely necessary for a time, to help get the
person well enough to engage on their own.
Do you believe that boosting advertising efforts across TV, radio,
the Internet, Facebook, various other platform someones might enhance public engagement,
complementing the strategies already in place. Do you think any
of these things would help improve the situation to get
it to the next level.
Might I'm not sure how much money or people would
be interested in financing something like that. It might help.
I would never say it wouldn't help, but really it's
the people working in the system being able to work
with each other and educating a lot more people in
every realm. So from the point of education standpoint, yes,
that would be helpful.
Yeah.
I believe the most critical step that we can take
is to explore every possible, avenue every nook and cranny,
as the saying goes, to uncover and share vital information.
This way, we can empower people who might not have
even considered the issue before, sparking some awareness and hopefully
making some meaningful change.
Absolutely and sharing success stories. Sharing the stories as somebody
who was home unless who did get into treatment and
turned everything around and ended up being able to go
on and live a very successful, but happy, peaceful life.
That's the thing we need to have people understand that
this can happen.
Yeah.
Absolutely, well, this has been fantastic. I really appreciate you
taking the time to come on.
You bet, thank you for the opportunity, and thank you
for the work that you're doing.
Oh it's my pleasure. Thanks again.
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