Janet Hays: Healing Minds NOLA journey to reform mental health systems

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one story at a time. Hi, I'm Tony Mantour. Welcome
to Why Not Me? Embracing Autism and Mental Health Worldwide.
Joining us today is Janet Hayes. She's a passionate mental
health advocate and is reshaping New Orleans by pushing for innovative,
compassionate care for those with serious mental illness. We'll explore
her bold mission to decriminalize mental health challenges, close gaps
and treatment, and build a stronger, more caring community. She
has a wealth of information and we're very happy to
have her join us today. So before we dive into
our episode, We'll be back with an uninterrupted show right
after a word from our sponsors. Thanks for coming on here,
Thanks for the invite. Oh it's my pleasure. Let's start
off with what you do. So.
I like to call myself a severe mental illness advocate
more than are an advocate for people with severe mental illness,
more than mental health, because as your listeners know, there
is a distinction between those things. I got involved in
kind of a weird way. I don't have a family
member or someone i'm close to that is struggling with
severe mental illness, but I'm a justice advocate, and so
it was really the injustices that happened to folks with
no fault diseases that piqued my interest. And in particular,
so I was living in the New Orleans region during
Hurricane Katrina, and after that storm, we saw a huge
uptick in people with severe mental illness that had nowhere
to go. There was no treatment, There were just lack
of providers, and they started being channeled and funneled into
the criminal justice system. Homelessness was increasing, and all of
these tragedies that we hear on a day to day
basis associated with people who aren't getting care, and it
was just more than I could live with as someone
who has the ability and the resources at the time
to step up and fight for these folks, I felt
like it, which just compelled me to get involved in
try to help fix systems to better serve folks who
again have no fault illnesses.
Yeah. So, I'm sure before you got into it you
had some understanding what was going on, but maybe not completely.
So once you dove in, what are some of the
things you did to create more advocacy?
Yeah, and I think not really. I think I was
like most people what I was seeing around me, I
didn't understand really from the root causes of what drives
these problems. I was more on the I did a
lot of activism and a lot of advocacy on other issues,
economic issues, criminal justice issues, but not really directly working
with the population of people with severe mental illness. So
it wasn't until I had a friend who ended up
in the criminal justice system, who had a psychiatric episode.
She also had asthma. She'd gone for help at a
hospital and essentially refused treatment due to an insurance issue,
ended up in jail, and from there she was moved
into in New Orleans. The old jail was called the
House of Detention, and the tenth floor was the mental
health floor, and horrible things happened there sure, and she
was having an asthma attack and tied down in five
point restraints and she ended up collapsing and they sent
her to the hospital where she died. And that was
my first real entry into the realm where I live now.
And we had a mutual friend who let me know
that there was a group advocating to reopen our largest
state hospital or psychiatric hospital in the area that cared
for people with super mental healths that had been closed,
and I got involved in helping them fight to reopen
that hospital. Well, we lost. Later on there was a
new hospital that was built in this place, but later
on I advocated that that building be reused for the
purposes of mental healthcare and research as a center of
excellence to fill in these gaps of lack of beds,
lack of continuity of care, lack of continuity of communication.
I know, these lack of crisis beds that at the
time we didn't have. And so in proposing this redevelopment project,
all of a sudden I'm wearing my developer hat, right
is if I'm a developer, just keep putting on different hats.
Sure whatever works in making this proposal.
Then I had to figure out, well, how am I
going to fill the space and how am I going
to pay for it? And so that's when I realized
the barriers that exist to get people to kind of
help they need to prevent these crises we see all
the time. So that was around the same time as
Representative Tim Murphy, who I know you've had on the show,
was introducing his Helping Families and Mental Health Crisis Act,
and so I was interested in that because there was
some I wanted to know what provisions were in this
bill that would help operate make this project that I proposed,
this one stop Shaw operational.
Okay, what happened next?
So I called his office up in DC and I
ended up speaking with one of his legislative assistants who
let me know some of the provisions in the bill
that would help. And one of those was repeal of
the Institutional for Mental Diseases Exclusion, which essentially prohibits federal
Medicaid from reimbursing site facilities with more than sixteen beds well,
I was talking about a more than sixteen bed facility,
and so in order to make it work, we would
have to remove that exclusion. So that was something that
I was passionate about working toward or helping with, and
I joined national advocacy groups and also met DJ Jaffy
at that time and started getting involved in his projects
to advocate for removal to barriers to severe mental illness.
And the rest is kind of history.
That's good information, So what did you do next?
There were some other provisions in that bill as well
that made a lot of sense to me, incluting hip
of reform right so information the prohibitions on sharing information
for people who have illness, which makes no sense to
me because we don't have those same I mean, there
are hippo, there are rules on the physical health side,
but nobody pays attention to them. It's only on the
mental health side. So that's drove me, I guess into policy,
looking at creating my own nonprofit organization to kind of
mirror what was happening nationally and to focus in on
some things going on in my own state that I
wanted to see reformed. That's how that happened, and then,
of course, once you get into the space, you start
getting calls. People find out about you. They're impacted, they
have severely menially ill loved ones, and they're in these
same situations as everyone across the country. So I started
to collect other advocates and we've done some good work.
Well I'll stop there, but because I don't want to
fledge you, I don't want to hit you with a
fire hose of information at one time. But some good
projects and some policy changes that I was able to
get done as an advocate.
That's great and it's not overload. It's good to hear. Now,
you started your own nonprofit, right.
I started my own nonprofit organization. It actually just began.
It began as I mentioned this one stop shop proposal. Okay,
I needed to submit that to the state as something
I felt that it should be submitted under the name
of an organization rather than a person.
Sure, I get that or some of the groups.
That I'd been affiliated with in the past, where there
was a lot of kind of baggage that left over
from those efforts that created a lot of bad feelings
on both sides, and I wanted to separate myself from that.
I wanted to start fresh and say, hey, you know,
I don't want to go back to these old fights
we were having. I want to put that aside. Let's
move forward together on these bipartisan issues that we have
we share concerns on.
That sounds like a great idea.
The day before I submitted the proposal, I was on
the Internet trying to figure out I actually before Healing
Minds Nola, I'd chosen a different name, but it was unavailable.
I mean, of course, I'm like looking to see what's available.
There was already a Healing Minds, but no Healing Minds
Nola and the Gmail account. The Gmail name was free.
So that's how Healing Minds Nola was born. So that
I could submit this proposal to the state nice and
then it was later on because of the interest that
generated that, I became more structure and decided to apply
for five H one C three status so we could
start fundraising to grow the organization. And that's it.
Really, that's a great story. So basically, you started out
as a foundation as a corporation. Yes, corporation, Okay, I
get it. You said. Once it all started, that's when
the floodgates opened up. So what kind of response was
you getting and where was it coming from? How did
you get it?
So a lot of the groups I'd worked with previously
to starting the nonprofit were people who were impacted. So
I moved to Louisiana to be as a recording engineering producer,
which put me really in that space with a lot
of artists, right, recording artists, musicians, people in these cultural
spaces who really are generally under resource. They're dependent on
medicaid and free services, and it's cash economy and they're hustling,
and so this is a population that was severely impacted
after Hurricane Katrina when all services went down. So those
folks were already there. So when I started the nonprofit,
it was just an anchor for folks to come to
that were already who I already knew and I'd already
worked with. So I already had a pretty good base
of people who I'd worked with previously that understood the
need for you know, revitalizing or to restoring, and they
were very passionate about it. That was just a kind
of an organic evolution that happened really previous work that
I'd done.
That's great. So when it started and it started picking up.
You decided to turn it into a nonprofit. As in
everything you have bumps in the road. What were some
of the bumps in the road that came across that
you had to work around.
Oh, these bumps never stop.
Yeah, that's true.
Some are bigger than others. We have huge potholes in
our city that you can fall into if you're not careful.
So I guess funding is the number one barrier. And
then finding people who were qualified, who have the knowledge,
institutional knowledge, and understanding of the policy barriers in the
system to be able to fill in these positions that
you know, normally I'm taken care of because I'm really
the only one that has the amount of knowledge on
the legal barriers for these folks. So even when I'm
talking with doctors and I'm talking to insurance companies, I'm
talking to lawyers, judges, sheriffs, ms, families, and you know,
they're all shocked to know some of the things that
I'm letting them know about legal rules and provisions that
are creating these human logjams and backlogs to the streets
and so on. So it's not an easy So the
realm we live in we were talking about this before
the podcast started. I Mean, some of the issues that
we deal with are just so complicated and so complex,
and you know, I think that's a part of the
reason why people don't want to touch them. Like policy makers,
They're like, we understand there's a problem, we get that,
you know, some stuff, but it's too much. You know,
I'm not going to touch it because it's too big,
and I want to deal with low hanging fruit. I'm
a politician. I need to get stuff done to make
my mark in the community so I can move on
to the next position or whatever. So it's really it's hard.
It's hard to make the work we do simple enough
for people to understand. And the people that really understand
it are the people who are living with it. Right, So,
our biggest group of advocate or of people involved with
Healing Minds NOLA are family members. They're doing the day
to day. They understand, don't necessarily understand why, but they
understand the problems like noone else.
Yeah, Unfortunately, it has a certain stigma attached to it,
and unless you're living with it, you don't understand it.
The only way of getting that cast aside is get understanding, right.
The perfect example of that is me. Before I started
this podcast, I absolutely knew nothing about autism. Then as
it grew and evolved, now I'm including anything that falls
under the mental health umbrella, and I'm learning. I'm talking
with advocates, I'm talking with CIT trainers, I'm talking with
people that have lived experiences. I'm talking with everybody that's
informing and telling their stories. So the more I hear it,
the more I understand, even though I never will completely
understand because I'm not living it. So we just have
to continue to put the word out there so that
the average person that listen to this podcast or hears
something on the news, they start to ask questions so
that they want to know more and understand more about
mental health and everything that goes with it.
Yeah, that's right. There's a lack of understanding about what
drives homelessness. It's not a homogeneous problem, right, It's so
the demograph, it's not one demograph. The homeless is made
up of so many different cohorts population cohorts that are
struggling with different things. I mean, maybe a person's just
poor and need housing. Maybe because they've been homeless for
a while, they start to self medicate, you know, and
they do the things a lot of us would do
to cope, and maybe they develop an addictionary, maybe they don't,
but then you do have I mean, I can tell you,
and I keep telling policy makers, I can tell you
that without the work that we do, and I got
involved with starting a court with a judge, which I'll
get into, but without doing the work that we do,
a lot of the I mean, you're the homeless population
would increase because a lot of the reason that our
folks are not homeless is because they have a caregiver,
right but that person is not going to live forever.
And so I mean, I'm sing at the state to say, look,
people aren't interested in finding out the roots of the problems.
All our policies are reactionary. We're dealing with after the problem,
right after the disaster happens. Now we're cleaning it up.
There's just such little interest in working to prevent the
problems where they start and get to the roots of
things and look at the long term trajectory rather than
dealing with just what's happening right now right in front
of us. Getting people to you know, getting them to
think this way, getting them to sort of modify their
thinking is a struggle in itself.
Well, so you mentioned in changing their thinking and getting
to other things, let's address that. What are some of
the things you're working on and how is it going.
Yeah, So one of the things that we've been really
successful with in Louisiana is implementing assist of outpatient treatment courts. Okay,
in the state I said assistive, which might be a
little weird for some people who are listening who know
these kinds of programs as assists did outpatient treatment. But
in Louisiana, the law that we got passed is named
Assistive Outpatient Treatment. So, like I said, when I got
involved in national advocacy, to look at what I could
do to help remove barriers that would benefit us and
one stop shop that I'm trying to create, and now
full continuity of coordinated systems of care and communication, assist
of outpatient treatment was really getting a lot of attention.
At the time, this is around twenty seventeen or so,
the federal government had just passed the Cures Act with
a number of provisions and the Helping Families and Health
Crisis Act, including appropriating funding for assist about patient Treatment
court programs, and so this funding came through SAMSA for INIH,
I can't remember which. And so there was funding now
available for any counties or where we have parishes in
Louisiana across the country who wanted to start court programs,
or maybe the mental health authority wanted to house the program.
And so because there was now money available, all of
a sudden, people were interested. People were not interested in
AOT or as we know it right assist about patient
treatment AOT and I'll call it AOT moving forward. People
weren't interested in that because there was no funding allocated
for it. New York did allocate funding and for there
for Kindred's Law when they passed Kindred's Law, and that
came with a whole set of data collection requirements and
saw on another requirement, which is good. If every state
would do that, I'd be all for it, but ours didn't.
So what happened in our state is we had in
two thousand and eight police officer by the name of
Nicola Cotton, who was actually pregnant at the time, came
into contact with an individual who had just been released
from long term psychiatric hospital. There was a suspect that
they were looking for and she had mistaken him for
the suspect and came into contact with him, and he
somehow got a hold of her service weapon and unloaded
it into her and her unborn child and killed her.
And it was a really impactful tragedy that happy Louisiana
that and a lot of people were horrified by it
and wanted something done.
Wow, I can just imagine. So what happened from there.
So at the time, our governor was Bobby Jindle, and
so he looked at he was looking at getting an
AT law passed, all what other states were doing, right,
So we weren't the first, but in two thousand and
eight we did get a law passed, but the mental
health authorities in the area weren't interested because they were
interested in the law, but they weren't interested in starting
programs because they said it was an unfunded mandate, So
it sat on the books. Essentially, time goes on. I
get up to speed. Actually, the Treatment Advocacy Center had
reached out to me in New Orleans and a doctor
who's a colleague in Baton Rouge to ask us if
we could send groups up to one of their training
symposiums that they had started in twenty seventeen to help
folks like us learn how to implement programs. So Treatment
Advocacy Center at the time was becoming more interested and
instead of just getting laws passed in states, implementing laws
starting programs because they were seeing these unused laws.
So once they reached out to you, what was next
on the agenda?
So we went up to Rockville, Maryland sam's headquarters in
twenty seventeen, we meaning a group of us from Louisiana
to learn AOT. We went to this symposium and we
got back and we said, you know, we have to
do this in Louisiana. So we decided to do a
statewide effort and eventually that resulted in the Treatment Advocacy
Center coming to Louisiana to do a training for the
whole state, which was you know, Louisiana specific AOT training.
At that time, also, I had reached out to a
civil court judge in New Orleans. In New Orleans were
a little different from some counties and even Paris is
in Louisiana that we have a separate system of civil
and criminal courts. So I had gone to a civil
court judge to ask if he would be willing to
start a program, and he said absolutely, let's go. We
were looking for funding, so he agreed to start the
program on the merits of AOT not because there was
funding involved. And so we had already started working on
planning and developing a program with a huge collaborative group
that we put together, including all facets of folks who
were impacted, all stakeholders.
Can you expand on everyone that was involved in.
This, police to doctors, to the mental health Authority, to
the Disability Rights Center what you would call the PAMMI
groupsaim I the represent people under commitments or not to
make sure there's no abuse or reglecting systems. So we
had a great group and then Treatment Advocacy Center came
down into this simpost for us and it just kind
of it kind of locked everything in. It became a thing.
Right now, we're not an idea, We were a thing.
Yeah, that's great. What happened after that symposium? Did that
change anything?
We continue to move forward with the Orleans aot court program.
Other parishes were very interested. That they didn't start, but
they started planning and then later on some of them
got some funding and there have been efforts here and
there but our court No Orleans, the one that Judge Reese,
current rece and I started together, is robust up and running.
We now are funded, although we do have funding issues.
And so you know, the doors opened and people came
in and we have been able to help an awful
lot of people who met criteria based on that they
have a mental illness and don't take their medications when
they're not confined and end up either rehospitalized or homeless
or in the criminal adressice system. And that's it. That's
all the criteria that's needed.
Yeah, that's great, and you've accomplished a lot. But even
with that said, there's just so much more that needs
to be done. Yeah, and like the legislators have told you,
that's a huge mountain to climb. Yeah, unfortunately, it is
a huge mountain climb. But until you start at the
bottom of the mountain and work your way up, you'll
never get to the top.
Yeah, that's right.
Everyone wants to get to the top of that mountain and
they want to be able to brag that they did it.
So what is it going to take in your mind
to get the legislation and get all these people together
to make some actual change, right.
And this is the These struggles have been going on
for decades, right, so it's nothing new. And I think
the issue is that people are very entrenched in their
ideologies and beliefs and they're looking we're always looking at
these either or solutions which don't apply with mental illness
or autism because it's a health issue and mental illness
doesn't discriminate who it impacts, right, absolutely true. And also
there's this idea I think that mental illness, or that
it's a funding issue, that people who are poor with
mental illness are the ones who are being impacted, and
that wealthier people who are wealthier or or a better
resource are able to get help for their loved ones,
which we know isn't true. So it's not even an
economic issue severe mental illness. The impacts, the negative impacts
we're seeing are based on policy barriers, not necessarily fun
enough funding is needed, But it's the ideologies that say, well,
we can't take a person's rights away from them, and
I know you've talked a lot about that in these podcasts,
which doesn't even it shouldn't even be a consideration when
you're dealing with a person who has thought disordered it's
not about taking their rights away. It's about giving them
their rights by helping them or getting them treatment so
that they're not thought disordered and can make good decisions
for themselves.
Yeah, it comes down to common sense, and sometimes it
just doesn't work in the legislation.
These old fights have just become so territorial over their
ideologies and not prepared to be open to learning anything new.
And I mean I have these discuss even on my
own on Facebook right or in social media or in
my own circles. And unfortunately a lot of these folks
don't work with folks who have severe mental illness, and
so they really are speaking from idea like they're talking
about their ideas, not their institutional knowledge or their experience.
Yeah, and we do have to listen to those that
have experience and lived experience.
I know initiatives that have happened in the New Orleans
area that started out with these ideas that you know,
we can't take a person's rights away from them. We
shouldn't be putting them in hospitals because it's carceral. Literally
they use the word carceral. We shouldn't be using police,
we shouldn't be involved that if we're in charge. If
we come in and we're in charge, all you people.
The reason we have in all these problems is because
all you people that have been in the system for
years that aren't solving the problems, We're going to come in.
So the problem is that you're a problem, and we're
going to come in and replace you. And we're just better.
You know, we're nicer, we're trauma in form you know,
we're we understand more about mental health than you all are.
Just you know, you're just like mean, cruel people who
are trying to force folks and medication into people. And
you know, as though somehow either people that have been
in the system for decades don't care, and so we
have folks that have come in and wiped out systems
and replaced systems with their own system of ideas, and
they're like, oh my god, what do we do? We
can't handle these folks. We need like, Janet, can you
get this person in long term bed in some hospital
or other in state of Louisiana. This person can't you know,
they're not going into housing. They they're you know, we've tried,
we tried to get them to trust us, and we've
been trying for months, and I'm like, well, all those
months you were trying, you know this person is progressively
deteriorated that much more when you've been helping them, right,
And so now there is these conversations. So once folks
actually run into people with severe mandal illness and deal
with the kind of stuff that families deal with on
a day to day basis, and providers and doctors and
all of them, all the folks who have been trying
to help for years and years and years, all of
a sudden, now realizing they're over their head, they want
us all to come in and save them. But again,
I mean, most of the problems are just ideological. There's
no reason why we can't work together. So I'm saying, look,
I don't oppose anything you're doing that's health of folks
or that's working for folks. It's permanent support of housing
and it works, you know, all the power to you.
You're using some sort of mental health program that's non medicinal, fine,
if it works for that person, great, but stop opposing.
Don't actively then oppose what we do their work. We
don't oppose what you do the work. You're actively opposing
what we do their work. So it's just having those conversations.
In Louisiana, we've been able to do some things.
Yeah, and it sounds like you've done a lot of
great things. So in closing, what would you like to
tell the listeners that you think is important that they
hear right?
So every state is different. I think it's really important
that people know what's going on in their own state,
So getting in it at the roots level, like in Louisiana,
I can tell you I'm looking at a spreadsheet right now.
We have eighty psychiatric hospitals and a lot of them
are in the New Orleans region. We have plenty of
psychiatric beds. We have no problem getting people into beds.
We don't just rely on nine million one systems. We
also have a system where a person can go. I
know this is weird. The coroner's office is in Louisiana,
or where a family can go to get an order
of protective custody to get a police officer to come
or a law enforcement officer to come and pick up
their loved one and take them to a hospital. There's
no ambiguity if the coroner has said yes, and they
have psychiatrists, corners, assistants are all psychiatrists, very highly educated
and trained. And if they said yes, this person meets
criteria to be transported to a hospital where there will
be an expert who will evaluate them further to determine
if they need to be admitted to a better or not,
then they will be admitted to the bed. So we
have that in place, So well, what's the problem. Why
is our homelessness is increased twenty percent in twenty twenty two.
Jails are full of people with severe mental illness? Is
our hospitals are you know, people in the revolving door.
They're being turned around and spun in and spun out
like no tomorrow. So why when we have all of
these systems in place where we can get a person
into the hospital even if they're not imminently dangerous to
themselves or others in this very moment, why are we
seeing the same problems we're seeing in other parts of
the country. You know, it's breaking that down further. And
so most of it tracks back to the fifteen day rule, right,
So the fifteen day in love waivers, Medicaid waivers that
were waivers to the IMD exclusion where a person can
get two weeks in the hospital per month that Medicaid
will pay for and that's it, and the hospitals are
going to follow that rule for the most part. So
what we need is long term continuity of care and
communication in our state. Right So it's not that we
can't get people into bed and I hear people telling me, well,
we need more beds. You know, we have a shortage
of beds, and I show them a spreadsheet and I'm like,
look at the spreadsheet. We don't have a shortage of
bed we have a shortage of long term continuity of care.
We can get ye a person in the bed, we
can't keep them there long enough for them to truly stabilize.
So those are our issues in Louisiana. And in a
lot of ways, I think Louisiana is a Canarian goal
mine because I see avocates out there in the country.
They're fighting that well, we just need more beds, and
it's like, yes, you do, but that's not going to
solve your problem. You need to go beyond that. So
we all have to learn from each other. But that
would be the main thing. It's like, know your state,
know your area, be a national advocate, but be a
state advocate as well, because that's where everything is local.
All politics is local, and politicians are more likely to
listen to you if you are speaking their language, if
you are identifying a real problem that's happening right now
that you can identify and you can say in our state,
this is why this problem is happening. So no, that
makes you more credible. When I started Healing Minds NOLA
and doing the national advocacy work, we got a lot
of stuff done. I got laws changed. We rewrote our
entire Coot law to remove any barriers from anybody referring
a patient into our or a person into our program.
We got our psychiatric deterioration standard added to the grave
disability standards so we can get people into treatment earlier.
We got a law pass last year that's about continuity
communications and being patient psychiatric hospitals. It mandates that hospitals
take information from families that use that information and discharge
to the provider and that there's no breaking communication. We
got that law pass. So but I can tell you
that the one thing that has made a huge difference
I think for me is in actually running and coordinating
an AOT court program where I am now entrenched in
these psychiatric systems where I'm dealing with dozens of psychiatrists
in patient and outpatient. I'm dealing with all the outpatient
provider systems, I'm dealing with the housing systems on a
direct one to one basis. I think that experience, though
it's taken me away from my advocacy a little bit,
which I'm trying to get back to, that experience has
made me a much more credible advocate as far as advocacy,
keep learning, keep doing those deeper dives, like getting to
your own state, because that's where you will find what
solutions are going to work, not only for your own
state but nationally.
Yeah, that's perfect information that can help a lot of people. Well,
this has been awesome, great information, great conversation. I really
appreciate you taking the time to come on.
Likewise, it's good to meet you, Tony, and good luck
with all of the work that you're doing up there,
and thank you so much. There's just so few people
that are really moving the ball with autism mental illness
that are the most vulnerable in our community, and when
someone like you steps up to be a voice, it's
a big deal. So thank you.
It's been my pleasure. Thanks again. Thanks for taking time
out of your busy schedule to listen to our show today.
We hope you enjoyed it as much as we enjoyed
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