When Systems Fail: Maria shares a Sister's Fight for Her Brother with Severe Mental Illness

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one story at a time. Hi, I'm Tony Mantur. Welcome
to Why Not Me? Embracing Autism and Mental Health Worldwide.
Today we're joined by Maria, who shares her journey in
the health care field and the challenges she faced advocating
for her brother with serious mental illness. It's a pleasure
to have her here. So would you kindly give us
a little information on your background?
Yeah? So, first for me, I would say a previous
job that I held. So just for background, I have
a bachelor's and a master's degree in public health and
my job that I held in between the bachelor's and
the master's degree. I was working in a medical facility
basically as someone that helps folks who would come in
to see our doctors that needed to have some help
getting through services and trying to find certain services they
might need, which very frequently were mental health or substance
use disorder related sir. So, for example, someone might come
in and see their doctor and you know, talk to
the doctor about their struggling with anxiety and depression, and
the doctor might suggest for them that they may want
to see a mental health professional.
Is that something they would set up or did you
handle that?
If that person didn't feel comfortable on their own to
try to navigate the system and to locate those resources,
they could be referred to someone like me who would
help to figure out who they could possibly see, what
kind of resources are available to them. A lot of
that having to do with who does your insurance say
you can go see, and again, what kind of services
do you need? Because there are different types of providers
in the mental health world, and I think through that
process I was able to see both the good things
and the negative things in some of our systems.
Can you expand on that some.
Some of the positives I think of where in particular,
probably where I live in the United States, is we
do have decent health insurance comparatively to some locations are
Medicaid and Medicare services do a lot for people, and
we tend to have decent regular insurance. So that was
something I was always having to poke through for people
and just being an advocate on their behalf for helping
them to connect to the services that they needed. I
don't know if you if you have had any experience
navigating through the perils of trying to get through your
insurance and figuring out what's covered and what's not and
who you can see can you get appointments in any
kind of decent time frame? All across the United States,
I know there is a lot of difficulty with access
to services, both in terms of not having enough providers
and there's often being long wait times, and then you
add in insurance and those kinds of things, so it
can be a difficult process for people to try to navigate.
That was kind of my first fore into being an
advocate of any current for you know, folks dealing with
mental health and meeting resources and I think again. As
I mentioned, I was able to see some of the
positive things within our system, but also the negative sides.
What were some of the negative sides that you saw?
Some of those negative science insurance thing one of them.
Insurance can be incredibly limiting in terms of which providers
you're allowed to go see what services they will cover,
and how much of those services they may cover monetarily wise,
you know, money is obviously can be a big issue
for people to access services. And then also I did
mention long wait times. You know, a lot of times
though somebody comes into the doctor seeking services, they're really
not feeling well. You know, you're not doing well, and
you are like, I need to see somebody. I need services,
and I kind of need them quickly. But there can
often be a long wait just to be able to
get in to see somebody, even if you're able to
locate someone on your insurance. So if you're dealing with
anything that's particularly acute, you know, like psychosis and things
like that, that can be difficult to manage because you're
asking people who may be feeling suicidal or having other issues.
You know, hey, you've got to stick it out and wait.
You know, a couple of months before somebody can see
you and possibly start helping you. So that was one
of the bigger issues weight times, insurance and then just
generally being able to try to navigate systems to get
people seen for the care they need.
Yes, navigating insurance companies can be really tough.
I would say. One of the things that scared me
a little bit about that is even when I was
well into that job and I felt very well versed
on the resources available how to navigate insurance, it was
still difficult even for me to try to work through
that system. And I just felt a tremendous amount of
I guess sorrow is a good work for it for
people trying to deal with that on their own in
any way, Because if it's hard for me and I've
got the expertise, and you know, I have a little
bull of weight behind my shoulders because I you know,
I work at a medical clinic and I'm struggling with
these things, you know, I can only imagine how difficult
it is for somebody who's just your average folk trying
to figure that out.
Well. Unfortunately, it's the big unknown. When people first start
having symptoms, they don't know what it is they don't
know what it's about. They need help, and when they
have to navigate through the medical system, then you add
to that navigating through the insurance system. It makes it very,
very difficult, and ultimately they're only asking for a little
help so they can get better.
Yeah, very much. So, you know, in my part, I
was glad that I was able to help provide some
of that support for folks because I know from dealing
with it how much needed that is. It also felt
often in a way that I was just kind of
a band aid, able to do some good work and
help some things, but I can't really fix the problem,
you know, from that vantage point, again, it doesn't you know,
someone like me having a position like that doesn't fix
the systemic issues that you know made that difficult in
the first place.
So what was the next step? What led you and
what kept you motivated to keep working towards it.
Yeah, so definitely. You know, my education background being in
public health. In public health, we talk about a lot
of things that affect health. Mental health is part of that.
Though generally in the public health world, there's a term
we use called the social detes of health.
Okay, can you expand on that part of that.
Is, you know, someone's mental health makeup is all of
these factors that we consider other than just you know,
your physical body and your genetics that go into your
overall health makeup. Some of it is where were you
born and where do you live. There are characteristics of
places that you know can affect your health. If you
live closer to a freeway than other folks do, that
can increase risks for certain health issues like lung issues,
you know, asma rates of things like that, And these
are all these things that kind of feel like they're
in the background, but they are very much a big
makeup of what goes into our overall health. Again, mental
health is a component of that. So education is one
thing that definitely continued my interest on the mental health front.
I also do personally have some mental health issues. I
have anxiety and obsessive compulsive disorders. So you know, on
a personal level, I am familiar with dealing with my
own mental health issues, understanding what it feels like.
So how long have you been dealing with your own issues?
When did that start?
So when I was a teenagers when I first started
to have anxiety problems and panic attacks, and I can
recall very vividly at the time that I was absolutely
terrified because I think, like you said earlier, I knew
something was wrong and I didn't feel right. These things
were happening to me, but I didn't know what they were,
and I went through a period where I was actually
able to get in and see someone and start to
get some help where because I didn't know what was
going on, I just thought I was going insane.
Sure, so what was your thought process, what were emotions
like when you was going through that?
That terrified because I was like, well, what if I
am going and saying what am I going to do
about it? How? You know, I had all these questions,
how can I fix it? Can somebody get me some
relief somehow? I think that's always stuck with me. You know,
as I've moved forward in my life that I can
understand it from the individual's perspective of how scary that
can feel and what it actually feels like to have,
you know, a mental health disorder. Progress on from that
beyond kind of my own personal experience and my educational
work background. I do have a brother who suffers from
what we would call severe mental illness, and what I
mean by severe mental illness. Is that unlike me where
I have anxiety and I have obsessive compulsor, you know,
I'm still able to function in everyday life. It doesn't
hinder me in that way.
Can you clarify on the differences between his diagnosis and yours.
My brother's mental illness, on the other hand, basically prevents
him from living a normal life. What he has it's
now called, well, they used to call it paranoid disorder.
Now it's called delusional disorder. I believe the name is
not the important part, obviously, but to give you a
sense of what that's like, I think most people, at
least to some extent, are a little bit familiar with schizophrenia.
They've heard the term. They may kind of understand the
rudimentary idea of what that means. Usually with schizophrenia, you
know that someone maybe having auditory or visual hallucination and
they're kind of, you know, mentally, they're not really in reality.
They often have what are called very grandiose beliefs where
they may think things like aliens are trying to abduct them,
or the US government is trying to implant things in
them and test them, and these things that you know,
we have people who don't have these disorders here and
we go, well, that's not real. So delusion disorder can
be somewhat similar to that, except usually the delusions that
the person has they can seem much more realistic. They're
not usually what you consider grandiose, like the aliens and
you know, things like that type of nature. In my
brother's case, he has what's considered persecutory type, which means
that he feels like he is being threatened, attacked, harmed,
and for him specifically, what this is manifested as over
time is that the mental state he's currently in, he
believes that me other members of our family, including our
dad and our stepmother, people he used to work with
at his jobs. Friends, He believes things like we have
phone taps on his phone, and we had cameras in
his apartment, and we were poisoning his food in his
water to make him sick and need to go to
the doctor. And people have in his mind, he believes,
have spread rumors about him all over town. So anytime
he goes somewhere, he thinks people know him and know
about these rumors, and that they're looking at him funny
and things like this so.
I've heard those with serious mental illness have what's called anisignosia.
Is that kind of a diagnosis of what he's going through.
Yeah, so he is in that category of somebody that
with this disease, he is not aware that he is sick.
He cannot tell that the things that he believes that
are happening to him are not that these are delusions
of any kind, just like someone who has auditory hallucination
and schizophrenia can't typically tell that that's not real. See them,
in their mind is one hundred percent real what they
are experiencing, even though obviously in the outside world it's not,
but for all intents and purposes for them. I think
one of the things that's difficult also about the way
that manifests in his disease is that it does not
matter what kind of evidence I could bring to show
him that what he thinks is happening is not happening.
I've said before when I've talked to people about it,
that I said, God himself could come down from heaven,
meet him and show him that this is not real,
and he would not believe it. And that's not a
choice on his part. That he is incapable of making
that determination based on the disease.
Yes, So as a lot of people do when they
are in that state, they ultimately come in contact with
the legal system. Has he had any issues with the
legal system so far?
Yes, and my brother unfortunately has been a victim of that.
And I do use the term victim for a couple
of reasons, so just to give a little bit of backstories.
So another thing that can sometimes be a little different
with his disease as opposed to I think what's more
common in something like schizophrenia or bipolar is this disease
did not come on quickly. It wasn't just like one
day he was fine and then the next day he's
talking about these delusions that don't make any sense.
So how did this progress with him?
Then he went through what I would consider kind of
a slow descent into madness. You know, in retrospect, I
can kind of see where it started. I didn't see
it initially going into it because at first, when we
would talk about things that I now recognize as part
of his delusion, they just seemed like normal for me.
For example, he was talking about a place that he
worked at and he said that he had these terrible
coworkers and they were always messing with him, and that
they would, you know, try to get him in trouble
at work and things like that. So it just seemed like, oh, yeah,
you know, maybe he's working in a kind of hostile environment.
Was some employees that aren't that great? That was completely
a believable thing.
Sure, that makes perfect sense. So how did it develop
from that point?
As time went on over the months and several years,
it started to spiral and get bigger. There were more
and more people involved in this ring that he identified
as people trying to harm him. I think when I
really realized that something was really wrong was when he
started including our dad and Stetlom and saying that they
had done some of these things to him, which I
knew absolutely.
Was not true.
At that point, I was like, Okay, something else is
going on here. You know, this isn't normal. Where is
he getting this from? At that point, I, you know,
through my career and my own personal stuff. I wasn't
unfamiliar with mental health, but I had not dealt personally
with someone, you know, with a psychotic disorder. So this
was I'm trying to learn in real time what I
think is going on with him and what is happening
and where this progresses to. Eventually, as I said, it's
just kind of of a slow spiral over time started
to collect more people into this conspiracy of people that
are hurting him. Eventually also included me.
Wow, how did that happen?
It didn't for a long time, I think because I
was somebody he trusted more than others. But eventually that
fell away too. And what ended up happening at first
was he got to a point where he was so
upset about things, and again, in his mind, we were
harming him, trying to poison him, trying to do all
these things, and so he verbally laughed out at myself
and our dad and stepmom and threatened basically to kill us.
And at that point, I'm going, oh my God, like,
we need to try to do something here, because I've
tried talking to him. I've tried everything I could think of,
you know, I've tried to get him. I had tried
to get him connected to mental health treatment, but he
didn't stick with it because he also thought the mental
health professional was part of the group of people doing things.
So what was your plans and how did you move forward.
So my next step at that point was like, what
can I do? You know, I was looking into what
are the laws in my state about you know, can
I have him involuntarily committed? Is there some way I
could potentially do that. I will tell you that trying
to find information on what to do with someone when
they're in you know, a loved one or someone is
in this capacity is almost impossible, even again for someone
like me with experience and knowledge of navigating systems. I
kind of only piecemeal came across information as things were
happening and moving forward, not in an ideal way. I
couldn't figure out that there was a way that I
could get him involuntarily committed, because it seemed like the
bar for involuntary commitment was so high would be impossible
to meet. Because at this point he's an adult, he's
responsible for himself. It's a little bit different when you
have someone who's a minor and their parents can seek
some help. But an adult, you basically have to have
someone declared incompetent and try to get guardianship over them
through a court of law, and that is not an
easy process by any means.
That's a tough situation, So what did you do?
So what ended up happening was I at some point
tried contacting the police, because the one thing I wanted
to do in this situation. I knew that my brother
did have access to a gun. I didn't know if
that gun was in working order because it wasn't epistol.
It was a type of rifle, older style, something he
had just collected, but I wasn't sure it could be workable,
and so I thought, well, I wonder if there's something
through the police where at least maybe we could get
his gun taken away and he could at least temporarily
lose access to go purchase a new one, just so
that if he did try to do something, it would
be harder for him to create any real damage. I
ended up speaking to the police a couple of times.
I showed them I literally had a text message from
my brother where he was talking about wanting to use
his AK style rifle on me, and he sent me
a picture of it to be threatening.
What happened.
I showed all this to the police, so it wasn't
just me saying this. I was like, I have visual
evidence what he's saying and what's going on. They basically
told me he wasn't specific enough, so they couldn't give
me what's called an extreme risk protection order, which is
where they could potentially go in and take the gun
away and keep loses gun rights and you know, things
like that, because basically the way they described it to
me is he would basically have to say I am
going to show up at your house tomorrow at four
am and shoot you.
Wow, that's unbelievable, and.
I'm thinking in my mind, like, who is ever going
to be that precise making that kind of threat. I
just don't see that ever happening. So it's like, how
could you ever get a protection order or something like this?
If that's where the bar is set?
A protection order Unfortunately doesn't mean that he will follow
it anyways.
Yeah, that's correct, It wouldn't necessarily stop him. But at
the time, I was like, I need to do something,
and this is something I can try for So being
rebuffed on that and feeling like I didn't have a
way forward, I was also simultaneously at this time, in
my state of Washington, we have something called designated crisis responders.
Some other states have this, but I don't know if
it's federal all over the country. But basically, our crisis
responders are people that you can call with either you
or someone you know is experiencing a mental health or
substance use crisis. They can talk to you about resources
and try to help you through the process. They also
have the ability to go check on someone who is
having a mental health crisis and in some cases can
potentially make a determination if that person needed to be
taken into temporary custody for assessment for treatment. So, while
I was trying to work with them, that also ran
into difficulties because, unfortunately, according to what I had been
told through them, they have not nearly high enough staffing
levels to deal with the volume of calls and things
that come into them. I know these are people that
are doing their best their social workers and mental health professionals,
and I do not fault them personally for not being
able to manage what is I'm sure a huge difficult workload,
and they're also trying to manage. This is the first
place that this touches onto the legal system a little bit.
When I discussed with them what was going on with
my brother and they were going to send some people
out to check on him. And potentially try to if
they could maybe take him into custody because one of
the issues with my brother involved a weapon or done specifically,
they had a requirement that if they go to meet
with my brother, they'd have to go with a police officer.
There is some coordination that pass to happen between those
crisis responders and the police can be able to go
at the same time. And what the crisis responders told
me is they said, a lot of times the police
aren't available, you know, you kind of just have to
go when they are available, and that may not be
when the person is reachable. I know they went several
times to try to check on my brother, but he
wouldn't be home, even though I gave them the approximations
of times that I knew he would probably be at home.
Because they had to coordinate with the police, it was
often at just times that didn't work.
With all that has happened, what is his status at
this point in time.
Yeah, so switching forward a little bit, I mean right
now he is homeless and severely mentally ill and not
under any kind of treatment.
So is he living on the street.
Yes, And I can tell you exactly how he ended
up in that situation because this is where it really
touches on a legal system and what happened. So at
some point after talking with the police, where I think
like our third time, one of them mentioned something we
have here called Joel's Law, which allows someone like myself,
a family member of someone who's severely mentally ill, to
petition the court to have him temporarily involuntarily picked up.
It's usually, like I think, it's a three to five
day hold where he would be assessed by a mental
health professional and then if after that they decided that
he needed to be involuntarily committed, they would go back
to the court and ask for that do something further.
So when I found out about that process, I was like, oh, okay,
well I was definitely going to do that. I filled
all of the paperwork, got everything in and the judge
agreed and when I hadn't signed off on the order
for him to be picked up. So that again has
to be done by the crisis responders. That's their role
in it again with the police because of her weapon,
and they still had these same problems where they kept
not being able to connect with him. Kind of long
story short on that. Because this goes over several months
where they weren't able to make contact and do anything.
I had a call for my brother one day. He's
in jail. I'm going, what the heck happened? Basically, in
his paranoid state, thought that neighbors in his apartment complex
were harming him and a bunch of other gary things
that he was concerned about. And one evening while they
were out, thankfully, he broke into their apartment and did
about seven thousand dollars worth of damage with a knife.
And I say, luckily they weren't home, because I can
only imagine if they had been there that somebody would
have gotten hurt. Thank God, at least that didn't occur.
But of course my brother's now in jail at that point.
Of course, the apartment over time, you know, they're not
to let him come back after this. He's no longer
has a place to live. And I'm dealing with that
while trying to figure out what's going on with my
brother if he's in jail. I'm talking to the crisis
responders at the same time, because it has said, hey,
you still have this order for involuntarily picking him up.
What's going to happen? Because he's in jail now.
So what was the response? What do they do to help?
Actually started out saying that that was a good thing.
I mean, it's not good that it got to the
point where he committed a crime and had to go
to jail, but they said, at least we know where
he is and he can go to him there. So
I'm thinking they're going to go check him out while
he's in jail and you know, do their thing from there.
But then they tell me that because one of the
charges that he has is a felony, they cannot do
anything with him until that's taken care of. Either he's
charged with it and found guilty and sentenced, or they
dropped that charge. As long as there's a felony charge,
apparently they can't step in and do anything.
Wow, that's a lot of hoops had jumped through. So
what happened next.
I was able to obtain records from his jail stay,
you know, public records afterwards, and I was shocked when
I found out that he was evaluated for competency. He
saw a psychologist there at the jail, and that psychologist
in their notes, diagnosed him with this delusional disorder, which
at this time I suspected this is what he had.
This was confirmation for me, this is what's going on.
But I also read in their notes that that particular
psychologist wasn't going to hold him for psychological care or
anything like that, because he noted that the crisis responders
already had an order and would be coming to get
him whenever the court stuff ended and they could touch
that again.
Wow, talk about the left hand not knowing what the
right hand is doing. What happened next?
What ended up happening later on once I found out that
my brother basically was released from jail, and ended up
driving him but letting him go on his own recognisance
after time served. But he had no requirements for follow up,
no requirements for any kind of mental health care or
anything like that. And the crisis or fonders had never
gone in. And they told me the reason they didn't
is because while he was sitting in jail, their order
from the judge expired. But I asked them, can I
renew this because the problem hasn't changed, this is still here.
Can I, you know, reapply? And they basically told me
I can't reapply unless he does something new. There has
to be a new crisis threat, something that goes on
where I can go to the judge again.
Now, did that lead you to create an organization to
help others that maybe going through some of the same
things that you are.
I haven't created one. I am part of an organization online.
It's called Mommy m om I it's Mother's of the
mentally ill. But it's not just for people who are mothers.
You know, you can also be a family member with
someone suffering severe mental illness. I found a lot of
support there. The lady that runs that online group had
a son who with severe mental illness, so had experienced
a lot of the same things. Her organization does do
a lot of advocacy through legal channels. It's something I'm
wanting to get more involved in because now that I've
definitely been through this process, I see all these little
holes in the system. Basically, this whole way through to
me is just every single point at which intervention with
my brother could have occurred and could have helped him,
all the way from before he even committed a crime.
I mean, if we had gotten back there way before
he committed a crime, he could have avoided prison in
the first place.
Yeah, that's real tough. So in closing, what would you
like to tell the listeners that you think is very
important that they hear about your journey.
Yeah, a couple of things. I know these stories can
often in many ways make things sound hopeless. I don't
want to encourage that that's how it is, because I
don't think that's how it is. I think there are
definitely difficulties and things that are not helping us along
the way. But I would encourage, you know, for family
members and loved ones and even just people who are
acquaintances or looking at a scenario with someone who's severe
mental illness, not to lose hope. Do the things that
you can do to the best of your ability. Especially
I know from my case. You know, this is my brother.
I love my brother. I'm never going to give up
on him. Sorry, if it makes me cry.
That's okay. We totally understand.
It's hard because I've been strange from him for so long.
Now I don't really speak to him because he's in
this mental state that's very upset with me. But I
still continue, you know, if I find some new avenue
that I can try to intervene, you know, I keep
that hope that at some point maybe we can get
him where he needs to be. So I think that's
important for people. I think also remembering to humanize the
people that are experiencing these things. You know, they are
human beings. And my brother's case, you know, yes, he
committed a crime, and that's scary. The thing I think
about it is he's obviously done that, not in his
right mind. He was doing that out of fear because
he thinks people are harming him. And I can only
imagine what I would do if I thought somebody was
doing those things to me. But that's another way again
to humanize what somebody is doing. It's not to let
him off the for what he's done. You know that
he committed that crime or anything of that nature, but
it's just a different understanding and humanization. I think. Also
the third important thing I would say is that as
people are becoming more aware of these issues, you know,
through your podcast for example, maybe they're learning about some
of these things for the first time or learning new things.
I think that awareness is step one on the road
to making these things better. You become aware that there's
a problem and things aren't working you know, the way
that they should, and the way that we would want
them to. And then beyond that, once you've become aware,
you can take some kind of action. It doesn't have
to be anything huge. You know, not everybody is going
to go be part of Congress and make new laws.
Sometimes it's just a matter of maybe you make other
people aware. Maybe you do want to send letters or
call your representatives and you know, ask them about the
legal side of things and how can we make this better.
I think whatever small or large ways you can find
to be involved. Ultimately, we may not always realize it,
but mental health touches every single one of us. Not
a single human being it is not touched by mental
health in some way. It's just the degree in which
you experience it in your life.
So true. Well, this has been a great conversation, great information.
I really appreciate you taking the time to come on.
Yeah. Again, I really appreciate you taking the time to
have me. I'm just glad to be able to share
some of my story and my and my brothers and
my family's experience. I really appreciate again that you're digging
into this and sharing these things, because I think they're
so critical. We're talking about human beings and their lives
and how can we keep people healthy and happy and
help them when they're not. Absolutely, thank you so much
for your time. I really appreciate it.
It's been my pleasure. Thanks again. Thanks for taking time
out of your busy schedule to listen to our show today.
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