Sen Judy Amabile: When Psychosis Hits, Families Need A System That Works

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one story at a time. Hi, I'm Tony Menteur. Welcome
to Why Not Me? Embracing Autism and Mental Health Worldwide.
This is our special event crafting justice, empowering autism and
mental health through legislation. Joining us today is Senator Judy Amarbalay.
She's notably passionate about addressing serious mental illness, informed by
personal experience, and has advocated for policies like involuntary care
in extreme cases, a dedicated mental health tax. With a
proven track record of coalition building and impact legislation, she
continues to work tirelessly to address Colorado's most pressing challenges.
She has a wealth of knowledge and is a pleasure
to have a join us today. Thanks for joining us.
Yeah, I appreciate you inviting me.
Oh, it's my pleasure. I understand that you represent the
people in Colorado.
Yeah. I live in Boulder and I represent Boulder, Lewisville, Superior,
Gun Barrel in Niwan.
I understand that your journey to becoming a senator was
so that you could help those with serious mental illness.
Can you tell our listeners what led you down that
journey to help others like you're doing.
I have a son who has Schitzo effective disorder. He
was He did fine, mostly fine through high school, but
towards the end of high school he started showing some
signs of mental illness. He was pretty heavy marijuana user
starting when he was in eighth grade. He really We
tried a lot of things get him to quit and
we were not successful, and then in college he deteriorated further.
When he was about twenty three twenty two twenty three,
he was diagnosed with schizo effective with coccurring substance use
disorder and also anxiety depression. He pretty much has had
every diagnosis you can think of. He has been briefly
homeless on the street. He was at the homeless shelter
and Boulder for about I want to say six months,
maybe it wasn't quite that long. He got thrown out
of there, and then he was criminal justice involved.
Okay, can you tell us what led to the involvement
with the criminal justice system with him.
Just doing crazy shit? Sorry, probably can't use that on
your podcast.
That's no problem, that's real life. Unfortunately, it's just PG
looking back. Can you tell us some of the things
you might have seen that now you look at and
that was just a precursor to what was coming. Because
I've been told many times that psychosis does evolve over
a certain period of time within young man. What led
you to believe that he might have had this until
he got fully diagnosed.
Well, I mean he started being sort of disconnected from reality.
Like he was going on steady abroad in college and
he said to his dad and me he was going
to Australia, and he said, did you guys know that
Australia isn't even in America? And it was like, hmm,
that's a very odd thing for this pretty well educated
person who's going to Australia, who say, And then he
had a lot of paranoia. He thought that some of
his classmates were trying to hurt him, you know, his
former high school friends were trying to hurt him. And
then the final thing that he told me about was
he said that people could hear his thoughts and I
googled that that's called thought broadcasting and that is a
hallmark of schizophrenia. And he did have also a lot
of mood swings mood disorder, so he would get super depressed.
He did attempt suicide. I would say his suicide attempts
were somewhat half hearted, but nonetheless pretty scary.
Yeah, I can just imagine. So through all this process,
I mean, it's the big unknown. You just don't understand
what's happening. You're only going by Google and what the
doctors are telling you. But it's still very confusing. So
how did that affect your family?
Yeah, so it's a train wreck for your whole family,
partly because everybody's mad at the person who's sick, and
it feels manipulative. It feels like they're just not trying.
Like it is really hard to understand what's going on,
and to have empathy and compension for your own child,
let alone his brothers. So I actually, and it sounds
kind of cliche, but one of my sisters insisted that
we take this class together. At the National Alliance for
Mental Illness, they had a class called Family to Family
in Boulder, and it was incredibly eye opening for me.
Like I thought, I'm pretty well informed, but sitting in
a room for twelve weeks with a bunch of other
people who had loved ones who had all kinds of
different stories but also some pretty similar stories, and seeing
how angry people were at the beginning, and like looking
at that and thinking, well, that seems like the wrong response,
and then internalizing that and saying, well, I'm doing that too.
That is what the class is kind of about, is
some education, then moving you to empathy not just for
your person but for other people, and then finally too advocacy.
Advocacy for your person and then also advocacy for others.
When you came out of the class, how did it
affect you? And then how did you move forward from it?
Yeah? I mean I definitely understood a lot more about
the disease I did have. I was able to get
to a way more empathy, a place of empathy for
my kid. He needed that, but also I really needed that.
Yes, I can understand that because as much as it
affects the person that's afflicted, it also affects the people
that's around him. Then add to it, if you don't
have the understanding, or if you do have the understanding,
it is still a difficult place to navigate through.
Yeah, it's really I mean. So the other thing is
is that you go, Okay, I'm not alone, and what's
happening in my family isn't unique. There are some unique elements,
I'm sure, but it's happening to a lot of people,
and then you don't feel quite so isolated either, because
it is very isolating. I mean, you know, they talk
about I haven't heard this in a long time, but
it's the no castle role disease. So you tell your friend, oh,
my kid is in jail, you had a psychotic break
and push somebody down. They don't come over with a
castle role, you know, they're just they don't have any
idea how to respond to that, or my kid's in
the hospital. Just to be clear, my kid never was
never in jail. He pled his case, he got probation,
he never had to go to jail. He was in
the hospital a lot and again, and they didn't come
over with cast roles. Nobody sent flowers. It is really different.
And also people try to minimize it. Oh, he's fine,
he'll be fine. I saw him the other day and
he seemed fine. And they don't do that with other illnesses.
You don't have to defend the fact that the person
is sick. You know, people just accept what you tell them.
Yes, very much like I had a person on my
podcast a few months ago, good sized guy, very healthy.
He says, if I tell him I'm autistic, they go, oh,
you don't look autistic. But he says, if I was
to tell them I had cancer, they'd be going, oh,
how can I help?
Yeah, well, I mean that also brings up this other
thing in my head. People say, oh, these schizophrenics. We
don't say these cancers. He is a person who has schizophrenia.
And it's a funny wordsmith thing, like I don't really
love that, but it actually really sticks when people say
that because he's not schizophrenic. He's my kid and he
has schizophrenia.
So once you got through all this what ultimately led
for you to run and get into the Senate.
Well, okay, so I was in the House first. Just
to be clear, I was in the House for four years.
And so what led me to do that?
Oh, okay, that makes sense.
Well it was probably a number of things. But Boulder
decided to run a tax to build an alternative sentencing
facility at the jail so that they could do work release.
And I wrote an op ed that said, why are
we doing that when the way to keep people out
of jail is to build a hospital, a continuum of
care so that we can actually help people get better.
Let's take our tax money and build a hospital. The
alternative sentencing facility expossed with like eighty five percent of
the vote, so clearly no one was on my team.
I said, I'm voting no on this because it's the
wrong thing to do. But a woman who had run
Mental Health Partners and who was involved with NAMI and
the NAMI policy Committee reached out to me Phoebe Norton
is her name, and said we would be on our
policy committee. So I did that. We went around and
met with all these different people, legislators and county commissioners
and city council people. It did become really clear that
no one, none of these people had this kind of experience.
And then I got on the board of Mental Health Colorado,
went down there and said, hey, I want to work
on policy. Andrew Romanov was running it at the time,
and he kind of sussed me out and said, well,
you can be on our board. So I was on
the board. But I also did get to work on policy,
and that was really eye opening and important to see
how hard it is to even pass a simple change policy,
and how many people are interested and how many different
points of view there are on every little thing. So
I did that just for a short while and then I,
I don't know, the seat was open, and I testified
on the red Flag law in twenty nineteen, and I
told this story about how my kid had said he
wanted to get a gun so he could kill himself,
and then I saw on his debit card that he
had made a purchase, like a ten or fifteen dollars
purchase at the gun shop, and so his dad and
I went running down there and were like, what's happening,
And they said, well, your person was here and he's
going to buy a gun, and his background checked didn't
come back instantly. So this is the gun. And they
showed us the gun and they said, we're just waiting
for his paperwork to come back. We you know, cried
and carried on, and they said, okay, we won't sell
the gun. And they wrote on the paperwork not to
sell it to him. But I wanted to tell that story.
So I get down there and I'm waiting for five
hours to testify, and it's my turn on a panel
with some other people. And I said the committee members
were getting some food and I said, well, I see
you all. I got dinner, and I just want you
to know that in the cheap seats back here, we
didn't get any food. And Tom Sullivan it was a joke.
And Tom Sullivan said to me, well, if you want
to eat, you got to run.
You just brought up policies and how difficult it is.
I've talked with senators and legislators as well as former
US House of Representatives, and you've got lived experience. Some
of these people don't have, although some do. I would
be interested to hear your perspective. Number one, how does
that make a difference for you even though you have
the lived experience, You're having to deal with legislators that
do not They only hear from people that give them
their perspectives. How do you bridge that gap for those
that do not understand so that they can get on
board and make legislation that will help everyone.
Yeah, it's hard, actually, And also I have my perspective,
and so what I've figured out is that not everybody,
even if they have lived experience, they don't necessarily agree
about the way forward. So for example, people who have
who I've met along the way, who have some of
them have deep seated mistrust for their family. And you know,
I come at it from the perspective of I'm trying
to help and the system is pushing me away at
every turn. You know, I have hundreds of families that
I've talked to, and there's a group called Mad Moms
that's got four hundred families now involved, and we all
have this same experience, which is we're not allowed to
participate in a way that would be more helpful, and no,
he wants to talk to us until it's time to
pay the bill and they realize the person isn't going
to be able to navigate that, or until they just
need somebody to come pick them up because they're releasing
them from a hospital or that kind of thing. That's
been incredibly frustrating. And then you know, to have this
other experience of people who don't want that, They don't
want their family to participate. They feel like where they
are is maybe their family's fault.
So navigating that, a lot of states have what they
call aot Is this something that is on your plate
and you're trying to push and get changed as well.
I've been beating this drum. I do work on a
lot of criminal justice stuff, but I have been beating
this drum about you have to have a good, solid
civil system and a way to get people committed, short
term commitment, a way to have people go even if
they don't think they want to, to get treatment. So
I've been working on all this criminal justice stuff and
we've been working on how to get people out of jail.
But it's like, if you get somebody out of jail,
but you never get them care, they just come back,
They just cycle in and out, in and out of
this system. The answer, in my opinion, is to get
them into care, and that might mean a civil commitment.
You know, maybe it's three months, maybe it's three weeks.
I don't know. It depends on the person. But we
have to at least be open to the idea that
somebody might need to spend months trying to figure out
what the right medication is and getting stabilized and getting
other things that might help them to get better, getting
you know, eating nutritious food and all kinds of things.
So but I've made a little headway on that. The
other day, one of the attorneys who I work with
a lot said to me, Okay, you're right, I'm ready
to work on that, you know, because the knee jerk
thing is that's just another way of locking people up.
But I don't want to just throw people into poorhouses.
I want there to be good care. Because people get
good care get better. Not everybody, but a lot of
people do. And also we have to admit that some
people are never going to get better. They can't live
out in the world on their own, and so we
had to figure out something for them too.
Yeah, that's a tough thing to acknowledge and admit sometimes
and most times, when you're dealing with the House in
the Senate, they are always looking at bottom dollar. In
other words, budget how can they not see by not
fixing this, or at least by not trying to fix this,
that it's just going to cost the taxpayers millions and
millions of dollars, and many times, if they can fix it,
these people can be diverted to other places and most
always the legal system will never see them again. How
can we get that put in place?
I mean, I'll just say, like here in Colorado, one
of the big things that we're dealing with is this
competency waitlist. So every year we have one hundreds of
people who are sitting in jail waiting for a bed
at the state hospital to get their competency restored so
that they can proceed with their legal case. Competency restoration
isn't treatment for your mental illness. It's just a workbook.
And as soon as you can pare it back what's
in the workbook, you're good to go and then your
case can proceed. And we are under this consent decree
because we got sued and we're spending twelve million dollars
a year on this consent decree, and the legislators have
bought into this idea of we just have to make
this competency weightless go away. So you know, we put
eighty million dollars into beds, more beds, serge beds at
private mental health hospitals to make the weightless go away.
And what happened is we went from four to fifty
to two fifty and then three point fifty, and we're
headed back up to four fifty because those people and
new people are just cycling around, and new people who
are becoming sick there's no civil system for them to
get care before they ever get into the criminal justice system.
Many of us were like, no, we should take half
of the serge bed money and put it into civil
beds and then let's get people into that system sooner.
And you know, we just couldn't win the day because
everybody is just burdened with this short term thinking. So
if the benefits come down the road, I don't know
if it's because we have term limits or like, I'm
not sure, but no one wants to wait to see
what might come down the road. They just want a
fix right now. And of course that's an absurd way
to go about it. And we're seeing now, of course
that it doesn't work. It didn't work for us, It
wasn't the way, And I've been really trying to help
people understand about what this cycling is. This thing that
I heard a podcast out of Washington that was called
the churn. And if we don't interrupt this churn, we're
not fixing anything. And now that we're looking at Medicaid
dollars being reduced, it's just going to get a lot
worse and we're going to have a lot more people
ending up in jail in homelessness, and we're going to
have a much longer list for the state hospital.
Yeah, and I heard, and I can't remember where I
heard it, that decades ago we had X amount of
beds and it seems like each decade the beds are
getting smaller and smaller in availability. And because of that,
there are no facilities that are able to take the
people that actually need the help. Then because of that,
they find ways to put them back on the street,
so they wind up living on the street, in a
homeless shelter, or unfortunately incarcerated. We have to find a
way to educate these people. A lot of these people are,
of course, our representatives, the ones that are elected and
served to help our communities. It seems like a sa
vicious circle to get them to understand, kind of like
a savicious circle that churn podcast that you just mentioned.
Yeah, I think that there is we are having a
dawning awareness. Like California tried to do this care courts thing.
I don't think it's been very effective, and I'm not
exactly sure why, but we I did go with a
group of people from Colorado to look at that. You know,
they had a meeting with all these families and advocates,
and the families wanted involuntary commitment, and the advocates did
not want involuntary commitment, so they ended up not having
involuntary commitment. They have voluntary commitment, and they've poured a
bunch of money into that system. But I don't know
that it's really helping or it's not helping in the
way that people had hoped.
Yeah, that's very tough. Without some sort of AOT, some
sort of safety net, what do we do. Many times
you will hear stories of people getting picked up by
the police, take him to the hospital. Then the doctors
say that he's not a threat to himself or others
at this point in time, so their hands are tied
and they can't do anything. It's sad that their hands
are tied because they may not be a threat to
themselves or others at that point in time, but give
them a few hours, a few days, or whatever time frame,
and they could be. We need to find a way
to help these people so that they don't wind up
in that type of situation.
Yeah, well, okay, So this year we've passed a bill
right now in Colorado, if you are a hospital and
you have somebody and you keep them and they're on Medicaid,
and you keep them for more than fifteen days, you
don't get paid for any of this day. So you
have to get them out of there before the fifteen
days are up in order to get paid. And if
the person is in three different hospitals for five or
six days in each hospital, none of the hospitals get paid,
and they don't even know the person was in a
different hospital because we don't have good data sharing. But
we got a waiver from the federal government for Medicaid
that says now going forward, a hospital can keep you
for up to sixty days. So in this bill that
we passed this year, it says it codifies this waiver
that allows the hospital to get paid for up to
sixty days, and it says if somebody's in your hospital
on a short term a three day hold and M one,
you have to evaluate them for a longer term stay.
And this year will maybe come back and say least
One of the things you have to consider is their history,
see if maybe they qualified. So how many times were
they on an M one hold? How many time were
they in jail previous? Have they been homeless? Like these
things should factor into this decision about whether you qualify.
It shouldn't just be you know what's happening in that
exact moment.
Yeah, I totally agree with you one. So in closing,
we've covered numerous things here, all very important topics. So
this is a very broad question, one that might not
have a perfect answer, but it has to be asked.
So what do we do? We have many of the
things that we talked about, plus the things that you
brought up, and it seems like a lot of things
are just so restrictive in helping these people. Even if
they're not asking for it, they still need this help.
So how do we get past some of these barriers
so that we can actually do what we're trying to
do And that's help people that need the help.
Well, I mean, I'll just start with this. Beds, beds, beds.
We need beds, and we don't have them. We have
we need and we need a continuum of care. So
we need hospital beds, we need transition to living homes,
which Colorado just we are building some of those. We
need group homes, we need boord of housing, all of that.
We need this continuum of care so that somebody who
has serious mental illness is getting cared for for the
rest of their life in the way that is the
least restrictive that they need. We do that with people
who have diabetes, or people who have severe autism, or
people who have, you know, a heart disease. We take
care of them and we help them and we give
them what they need. And we need to do that
with mental illness. Now. In terms of how do we
find the money to do all of that, I don't know.
I get in my car at night and I think,
what have we done in the time I've been there.
We've passed a lot of bills on this topic, and
I'm not sure if we've helped anybody or not.
Yeah, yeah, I get it. I was speaking with a
member of the House of Representatives in Iowa. Just the
other day they passed a bill. Everybody voted for it,
got to the Senate, it got killed. So now they
have to wait till next year to reintroduce the bill
again and hope that it passes. If there was one
person that needed that pasted, just one, then the Senate
failed them. We have to find a way to get
wins instead of losses.
Yeah, well, I'll tell you what. I have a pretty
good track record of wins on the mental health stuff.
That's great, and big part of that is I've just
been fortunate to work with people who are willing to
come together. So the criminal justice stuff, the Public Defender's
office and the DA's office, they're legislative people, are reasonable
people who want to get to a compromise, who would
rather see something happen than nothing. So we've had good
luck with that. But the knock it out of the
ballpark big changes are really hard to come by.
Yeah, yeah, that's understandable. Well, this has been a great conversation,
great information. I really appreciate you taking the time to
join us today.
Yeah, thank you for taking the time to care about this.
Oh it's my pleasure. Thanks again, thanks for taking time
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