Rachel Streiff: Mad Moms Rising for Mental Health Reform

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world one story at a time. Hi, I'm Tony Mantur.
Welcome to Why Not Me? Embracing Autism and Mental Health Worldwide.
Joining us today is Rachel Strife. She is the co
founder of Arizona Mad Moms, a fierce advocate for transforming
mental health care for those with serious mental illness. With
her background as a chemical engineer, she brings a unique
data driven perspective to her mission. Fueled by personal passion
and a relentless drive for systemic change, her work has
rallied countless families, influenced legislation, and sparked hope for better
mental health support in Arizona and beyond. Today we'll dive
into her inspiring journey and her advocacy. So before we
dive into our episode, we'll be back with an uninterrupted
show right after a word from our sponsors. Thanks for
joining us today, Thank you, thanks for having me. Oh
it's my pleasure if you would give us a little
background on how you got involved in what you're doing.
So initially, I had a family member that developed serious
mental illness and made a very good recovery.
And the medication that took years to.
Access was called Closepine, and it's a really important antipsychotic
medication that family members doing great.
That was many years ago.
At the time when all of that situation happened, I
had really no idea about serious mental illness. I didn't
know much about those disorders. I had taken maybe a
psychology class in college that talked about schizophrenia bipolar disorder,
but I had never really known anyone and I just
didn't have any experience with anything like that. And if
serious mental illness is not on your radar, you really
have no idea. Like I really didn't know what a
psychiatrist even did, and I had never even visited one.
With all this happening, What changed since that time?
I had the opportunity to meet people once something like
that happens to a family member. You see individuals on
the news and on the side of the street, your
perspective is a lot different. I met an amputee that
was living on some cushions behind a building. I was
able to recognize a serious mental illness, and I was
able to get him some help and become his advocate.
And then I eventually became, just through meeting friends, a
legal guardian of a woman who suffers from schizophrenia and
is a very complex case, and so I help advocate
for her and I help her family make sure that
they are providing for her care. I just started seeing
a world that I had no idea existed. It's really
a genocide happening right now. People are dying behind bars,
dying in the streets. People are dying prematurely from untreated
illness and from comorbidities from lifestyles that happen substance use
disorder that can sometimes co occur, the side effects of
very strong medications that they need to take. It's a
very difficult world that has been long forgotten. Right now,
families and mothers and jails are the new asylums. We
closed the hospitals, most of them, and we didn't fortify
community services. And there's many elements of the IMD exclusion
that is preventing specifically serious mental illnesses from getting the
treatment they need. Unlike other types of disabilities, Our kids,
our family members with SMI are neglected and forgotten, and
mothers are going to change this.
You've gone all through this, You've seen everything that you've seen.
I know you work with legislators and senators. I'm curious
what do you see as the big challenge? You just
brought up that a lot of the hospitals have been
closed over the last few decades and the prisons have
become the de facto hospitals. How do we get around
that so this can stop, so that these people can
get treated with a little more respect, Because, as you said,
if a person doesn't have any lived experience on this,
they don't know what the heck is happening. They do
not understand this. We have to somehow get it across
to them. Because actually I was one of those people.
I didn't get it. It wasn't until I started interviewing
people on my podcast earlier this year that I started
to get an idea of what was happening. And I
still don't know what's going on. No one ever does
unless they're living it. If I heard of some bad
thing that happened, I used to think, Oh, it's a
bad person, put them in jail. Now I want to
know more to see if it's just a person that
the system failed. So how do we get out of
this situation where the system just keeps failing these people.
Probably the most foundational piece of this is education. There
has been a movement to really flatten what we consider
a mental illness. Somehow that term has gotten expanded to
every type of depression or anxiety or worried mental health
condition that exists. That has significantly confused public perception, that
has detracted and funneled funding away from true mental illnesses,
true serious mental illnesses.
Everyone is confused.
When I was fourteen years old, my grandfather was a
criminal defense attorney, and I know now this was the
beginning of my training as an SMI advocate. He sat
me down at the age of fourteen and said, you
need to watch the most important movie ever made, and
most would think, oh, he made me watch To Kill
a Mockingbird or something like that, But in stead, my
grandfather made me watch the movie Psycho, which I don't think.
I slept for years after that, and I don't know why.
I know now why he told me to watch it.
But that movie was about a man who ended up
developing some sort of dissociative identity disorder, and it was
a horror film where he killed people in the infamous
shower scene. But most people don't realize that at the
end of that movie, and this was the point my
grandfather wanted me to get. The end of that movie plot,
he is sent to a mental hospital for the rest
of his life because he was found not guilty by
reason of insanity.
Well, I've seen that movie. I never remembered that part
of it, but I guess I'll look at it completely
different from now on.
There was a time when we understood this as a
society that mentally ill people are very sick, that their
illnesses and the symptoms of untreated illness can cause them
to do strange and dangerous things and even commit horrible
violent crimes. Because of the symptoms of their untreated illness.
We have forgotten that as a society, and there's a
lot of reasons for that. We've also somehow lumped these
serious brain and thought disorders that are actually organic brain diseases,
probably even neurological illnesses. These seem to have gotten lumped
with general mental health and we are confused, and we
put them under the umbrella of behavioral health programs and
these sort of you know, voluntary health and wellness treatment programs.
But these are serious, serious illnesses, and when we shut
down all the hospital beds now mothers and jails are
taking care of these individuals. From a fiscally responsible perspective,
we pay for this either way, whether we are putting
these disabled individuals in a jail or a hospital, we're
still paying for it. And if the public safety can
sty earn so simply letting everybody run in the streets
without treatment and untreated, it's a major public safety issue.
I have mothers right now in our groups that are
in harm's way. I just talked to one five minutes
before this call. Caregivers are often threatened and assaulted. It's
much worse if maybe they are an undocumented family right
because they're then afraid to call and ask for help.
So it's really a public safety crisis more than anything else.
Right now, this led you to be a founder or
a co founder co founder okay, co founder, Yes, Arizona
Mad Moms.
Correct, Arizona Mad Moms.
I was also the co founder of another group called
the Angry Moms. That effort has to do with access
to a really important medication called Closepine. The other thing
that we seem to have lost track of is that
these acute brain conditions are treatable with medication. How do
you treat a psychosis disorder? You do that with an antipsychotic,
with medication. There's been a big movement kind of away
from psychiatry or perhaps even I would say disrespectful to psychiatry.
It's true. There's a lot of you know.
Private practice psychiatrists that don't treat serious mental illnesses. And
it's a bit tragic, you know, all the resources again
go to these mild, general mental health conditions, and where
we need psychiatry, where our lives depend on this is
with the serious psychiatric disorders.
Okay, so which one was first? Mad Moms are angry moms?
Well, the Angry Moms actually came first, so we didn't
pick any of these names. The Arizona Mad Moms was
I think the most recent, and there's Mad Moms chapters
in other states.
But the Angry Moms.
Started, I want to say, twenty nineteen, twenty twenty, a
little frustrated caregiver in Michigan couldn't get Closepine, critical medication
for loved one.
She got upset.
They called her angry, but she and a lot of
mothers that joined us succeeded in getting FDA regulations removed
surrounding access to that very important antipsychotic.
How was the start.
So then when other groups started forming to address other
issues outside of Closepine and issues with policy and laws
with treatment and access to care, they said, well, you're
not the Angry Moms. I guess we'll call you the
mad Moms. That's the term that has really stuck. So
we're the mad Moms. And maybe there's a double entendre there.
I don't know. Because it's hard to live. It's hard
to live that life.
So with those two organizations, you're actually working with people
that have to live with this on every single day. Yes,
And I think you also work with senators and legislators
to work on bills to actually make some change.
Yeah.
So once our group solidified, this was at the end
of twenty twenty three, and Crystal Fox, who you interviewed,
her son passed away after he hung himself on December
twenty twenty three. That generated outrage in our community who
had been fighting for Joshua to have access to care.
So we started the Arizona Mad Moms and we got
some attention from lawmakers in our state on both sides
of the aisle, Republicans and Democrats, through our efforts at
our state capitol. By showing up by our testimony, we
succeeded in passing several laws. Among them was John's Law,
named after Joshua's dad, John Fox, who I knew from
a parent support group that I was in.
Yeah, that's just so tough, but it was really impressive
that you got it done.
That really just exploded our movement. You know, there was
news coverage over those laws being passed. There was news
coverage highlighting some of the tragic stories. We had stories
read by a state senator on the Senate floor. We
just started sharing the truth about serious mental illness, sugarcoating it,
and our movement in Arizona that started out with about
a dozen moms at that point. In two years time,
we're now about five hundred and fifty families. And that's
not a success statement, that's a tragedy because what we
are finding is families and these very sick individuals are
being failed by the system.
Yeah, that is just so sad.
I'm also learning that while there's a lot of similar
problems in every state, there's a lot of differences from
state to state in what the problems are. For example,
California has money, their programs are funded, but they don't
have great laws and they don't have great policies. Arizona,
we have reasonable laws, we have reasonable policies, We have
good relationships with our Medicaid office, for example, and the
local clinics. But our programs are woefully underfunded and there
is a major, major failure on the part of our
state to fund supported housing and appropriate facilities for individuals.
So we've got a big financial problem that's led to
a public safety crisis in our state.
Do you have an AOT law, and if you do,
how does it compare to those in other states.
We actually have a very good, well established AOT program
in Arizona. We call it Court ordered treatment or COT.
You'll find that different states might have other names for it.
So we have COT program in Arizona, both in patient
and outpatient. At least, the criteria is reasonable, We have
solid due process. There's a couple gaps with it, but
overall it's set up to be reasonable and effective and
also respect the patients and their families. The problem is
that it's poorly funded and there's gaps. I mean, there's
pockets of good providers within our COT system, but there
are some real challenges in delivering the necessary care and
the level of care that's needed to treat those folks.
One of the biggest things I hear from various people
from different states is just like you said, they can
get the laws passed, then it's getting the funding to
support them. You can have laws, but if they're not
being implemented because they're not being funded, then it's really
not helping anyone. So what's the next step in order
to get these laws out there working because the money's
behind them pushing them.
What's interesting is the money is there, but it needs
to be redistributed. I'll give you an example. Because of
the IMD exclusion. Our hospital system is set up to
deliver care in only a two week increment, and that's
most states. Okay, so individuals can be hospitalized longer than
two weeks, but the states then have to pick up
the tab.
And so well.
The way Arizona is designed is we have plenty of beds,
plenty of hospital beds, plenty of Medicaid dollars being funneled
into our state. It's just happening in two week increments
in the most expensive way possible. So there is a
revolving door of individuals that are discharging from one facility
after two weeks and going right into another within a
matter of days. Unlike programs that offer long term care,
for example, for developmental or intellectual disabilities, physical disabilities, or
age related disabilities in our long term care programs, those
conditions have opportunities for assisted living programs and long term
care because they are not part of this IMD exclusion.
And so we can have individuals living in assisted living
facilities and programs that are supervised and provide around the
clock care. But we've excluded the SMI population from that
dead We're doing it very expensively in two week stays.
It's a variety of private hospitals. Ask anyone who works
in these private psychiatric facilities at any point in time,
a third to one half of the patients in those
facilities are friendly faces, revolving door individuals that we are
essentially housing in hospitals. States look the other way because
Medicaid dollars are funding this and the housing cost, the
assisted living cost that the states have to pay because
of the IMD exclusion. They're avoiding investing in that because
we can just keep people on these two week funneling
of cash into our state.
So what's your answer or what is your solution to
this issue?
So if we took that money and we applied it
to supervised housing and long term care and assisted living,
you would get so much more for your money. So
this is not a lack of available funds. It's styloed.
I mean, if we turned our jails into good treatment facilities,
if we created secure residential programs like we do have
for Alzheimer's, if we invested in some decent real estate
and workforce development, we could get early intervention, We could
prevent comorbidities, we could prevent deterioration, and we could stop
these individuals from not just deteriorating and becoming increasing burden
on the system, but I've seen recovery to where individuals
are no longer disabled and are even productive, tax paying individuals.
So there's ways to do this, we're just not doing it.
I was an engineer for twenty seven years. I worked
as a industrial, chemical, and biomedical engineer. That's what I
did for a long time, and it pains me to
see the inefficiency in the system. And that's probably why
I'm so driven to fix this thing. We're not looking
at the right outcomes. We are spending money on the
wrong thing, and it's wasteful. It's not just wasteful with
our finances and our tax dollars, it's wasteful neglect and inhumanity.
Okay, we've covered a lot of bases here. Who's the problem?
Who do we point the finger at, Who's number one
on the list, say you need to do something, and
then number two you need to do something. How do
we figure out the ones we need to look at
and have them change their thinking so we can change
the system so it ultimately gets better to help those
that really need the help.
Ultimately, it's going to be lawmakers, and it's also going
to be medical schools and the field of psychiatry. And
I hate labeling government or a medical field as an
enemy because we need them. Our lives depend on this,
Our loved ones lives depend on this. We absolutely need
good skilled psychiatrists. And we need lawmakers to understand serious
mental illness, both the criminal justice implications and the access
to care that is needed, and to realize that we
are going to pay for it either way. And we
need to stop lying about what's happening, this sugarcoating that
mentally ill people aren't dangerous. This everybody can recover. It's
just a matter of you know, will or or talking
it out. These are serious medical conditions that require treatment,
that require good doctors, that require good lawyers, that require
a solid system of care, and these are truly disabling,
devastating and dangerous sometimes.
Yeah, So how do we get to the point where
people can understand Because a lot of people like to
use that word stigma, I don't use that anymore. I
try and use the word perception, because everyone has their
perception of what they think it is. It can be autism,
it can be bipolar, it can be schizophrenia, it can
be anxiety, it can be anything. They have their perception,
and that perception is only what they think it is. Right,
then if they look at it in reality, that's what
it really is. How do we go about getting that
perception changed to everyone. I think that's a huge barrier
to get past because people aren't living with it and
they only think they know what it is, but in
reality they really don't.
Yeah, So first thing, I want to address the S
word stigma. I don't allow that word. In Arizona mad
Mom's circles. That has been a giant red hearing.
That is not the problem.
Our kids cannot get treatment, Our kids cannot get killed.
Access to competent psychiatry is the problem. It's not a
lack of stigma. Okay, it's not a digma problem. It's
a medical problem. So I don't use that word. And
you're right, it's perception. And it probably starts with education,
even middle school and high school. That's probably where it's
going to start. It's also going to require educating people
who work in both law enforcement and public defenders and
our criminal justice staff. It's really going to start with education.
We need to bring back the truth, not a watered
down version that everybody has a mental illness because I
had a bad day at work today. We need to
bring back true science into our discussions and our understanding.
Yeah, I think that's a great thing, is understanding for sure.
Now what do you think is important? What do you
want to tell the listeners about your organizations that you doing,
and of course what you're trying to do for the future.
I think if I had an audience that was everybody,
I would just suggest seek understanding. We're all on Twitter
now called x. We all see flashy headlines, we all
see the sensationalized violence in the media. There was a
story that ran on one of these news channels about
a young man who did not get his medication in jail,
and so he plucked out his eye, and he was
successful in suing the jail for lack of treating his
mental illness that caused him to pluck out his eye.
I know families whose loved ones have plucked out their eyes,
and that is complication that is not uncommon from someone
experiencing severe visual hallucinations that they can't discern from reality,
so they pluck out an eyeball and the social media
comments on news story were incredible to me. Wow, what
an idiot. I can't believe he plucked out his eye
and taxpayers have to pay for this. Now, that was
the attitude. There is no understanding that these are serious
medical conditions and that behaviors can be caused by these
types of problems. I attended a sentencing hearing for a
young man who is currently in prison for killing somebody.
The cause of this tragedy was poorly treated schizophrenia. A
psychiatrist made a mistake on a diagnosis, gave him a
wrong medication. It made the problem worse, and the results
were tragic. The prosecution's argument was, schizophrenia doesn't cause violence.
So I mean, that's just a blatant lie in this information.
And the family was just under the belief that this
person was an evil monster. And not to take away
anything from their terrible loss and hardship. But I wish
I could, wish I could turn that anger and that
heartache for the real problem that was the lack of
treatment and a lack of access to care and a
system that has failed this family. And we see caregivers,
We've had families die, parents especially die because of this
terrible lack of care and their loved one. You know,
Crystal Fox is a great example, but there's others. There's
a young man, Alejandro Gonzalez in Arizona, you can look
up the headline. You know, had serious mental illness, was
discharged from jail, probably with a day of medication and
very likely no support, runs out of his medications, kills
his mother. And you know who's to blame there, it's
not the young man that got a no fault brain disorder.
So education is so desperately needed at the society level. Again,
we understood this in the nineteen sixties. We understood not
guilty by reason of insanity, and we took care of
these individuals. We understood the danger somehow that's gotten lost,
gotten lost for a lot of reasons.
Yes, I cannot disagree with you there whatsoever. It seems
like everyone is just so out of touch.
Now, everybody's out of touch.
It goes from the people that make the laws all
the way down to the people that supposedly uphold the laws.
Then you add in the medical system and all the
other entities that deal with it on a daily basis.
There's just no continuity at all.
And they're you know, not everyone is out of touch.
There are some very skilled doctors and psychiatrists and case
managers and people working to change this from the inside.
In our own Arizona Medicaid office, we have just some
very dedicated professionals working hard to try and change this.
Change perception, change the focus, change the priorities. But lawmakers
have to listen. They have to be willing to fund this.
They have to be willing to in states where the
involuntary treatment criteria is to lax, they need to support that.
And usually it's a matter of education.
Yes, again, I cannot disagree. Education is the foundation of everything. Well,
this has been great, great conversation, great information. I really
appreciate you taking the time to join us today.
Yeah, you're doing a good job.
We're grateful that you're even covering these things.
Oh it's my pleasure. I really appreciate it. Thanks again,
thanks for taking time out of your busy schedule to
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