Episode Transcript
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Speaker 1 (00:05):
Welcome to why Not Me
?
The World Podcast, hosted byTony Mantor, broadcasting from
Music City, usa, nashville,tennessee.
Join us as our guests tell ustheir stories.
Some will make you laugh, somewill make you cry.
Their stories Some will makeyou laugh, some will make you
(00:28):
cry.
Real life people who willinspire and show that you are
not alone in this world.
Hopefully, you gain moreawareness, acceptance and a
better understanding for autismaround the World.
Hi, I'm Tony Mantor.
(00:52):
Welcome to why Not Me?
The World Humanity OverHandcuffs the Silent Crisis
Special Event.
Joining us today is AnneCochran.
She is the Executive Directorof the National Shattering
Silence Coalition, nssc, apowerful voice for those
affected by serious mentalillness, including the 8 million
(01:13):
children and 14.2 millionadults living with or lost to
these conditions.
Since 2017, the NSSC, anonpartisan alliance of family
members, individuals with SMI,professionals and compassionate
advocates, has been drivingchange and raising awareness to
reform health and criminaljustice systems for those with
(01:34):
SMI.
We're honored to have her shareher expertise with us today.
Thanks for coming on.
Speaker 2 (01:40):
Thanks for having me,
Tony, and it's been great to
collaborate with you onHumanities Over Handcuffs,
giving families and mentalhealth advocates a chance to
have their voices be heard.
Speaker 1 (01:50):
Well, it's my
pleasure.
So if you could tell me how yougot involved in this charity.
Speaker 2 (01:55):
So the National
Shadow and Silence Coalition.
It was founded in 2017 by awoman named Jean Gore and,
unfortunately, she lost herbattle to cancer about two years
ago.
The name of Jean Gore and,unfortunately, she lost a battle
to cancer about two years ago.
I stepped up as executivedirector and have been involved
with the organization for abouttwo years at that point in time,
and we've just really continuedto grow from there.
(02:16):
We're an organization made upof caregivers, peers and
professionals, all looking toadvocate to improve outcomes for
those with serious mentalillness in their families.
Speaker 1 (02:28):
So how have you seen
your organization grow since
you've taken it over?
What are some of thedifferences that you've seen
over the last few years?
Speaker 2 (02:36):
Well, I think that
word is just getting out there,
and we're doing a lot ofeducational awareness.
We do peer and pro talksquarterly.
We've developed several guidesOne is a psychosis guide, the
other is a caregiver guide.
We've also done collaborationswith people like yourself in
Humanities Over Handcuffs, butalso with Aware Now that's a
(02:59):
digital platform magazine forsocial causes.
We have done the Beyond Stigmacampaign, which features a story
every month in their columnshowing that the reason that
individuals with severe mentalillness aren't getting the help
they need goes well beyondstigma, and so we're really just
trying to get our stories outthere so that people can
(03:20):
understand that it'sdiscrimination and neglect that
these individuals are facing.
Because if you think about anyother marginalized group, where
would we let someone becomehomeless, not treat them in and
out of a hospital?
There really isn't anothergroup that I can think of that
we treat this way.
Speaker 1 (03:39):
What are some of the
things that you fight for, for
change?
I mean, I know stigma is a bigthing, I know the perception is
a big thing.
Those are just things thatpeople see.
What are you trying to changefor people that's actually
living it?
Speaker 2 (03:52):
Yeah, so that's a
great question.
It really isn't stigma when wetalk about severe mental illness
and people in psychosis, whichmeans they have lost touch with
reality.
They can't choose to havetreatment because they don't
know and I know that you knowthe word anosognosia.
They have no awareness into theillness.
Therefore, they are not goingto seek treatment, and that is
the number one difficulty thatfamilies face in trying to get
(04:16):
their loved ones help.
A perfect example that I cantell you a woman that I'm
dealing with in Massachusetts.
She has a son, 49 years old,been off his medications for
over a year, completelypsychotic, threatening to kill
and rape people.
Most recently he was going totake dumbbells outside and beat
them because he was a creatorand this woman cannot get him
(04:37):
help.
So I have been working with her.
I've called our Department ofMental Health, I called a
co-response team to go out andevaluate him, spoken with the
treatment team that was takingcare of him every possible
person and two months later hewas still out in the community.
He was recently arrested forgetting an altercation with a
(04:57):
group of people and he's nowsitting in jail in isolation,
completely psychotic, and thelawyer, the public defender for
her son will not talk to thiswoman because he hasn't done
anything really that bad.
We're going to try and get himout.
So it's really like what are wegoing to wait for a tragedy to
happen and then we're going toturn around and say, well, how
(05:17):
did that happen?
Well, this is how it happened,of course, because this mother
has been fighting to try and gether son help for over a year
now and can't.
Speaker 1 (05:27):
Okay, so we brought
this up several times through
the month.
I think for people that mightbe listening, they still need to
know the differences.
You bring up anosognosia.
Can you explain the differencesbetween that and someone that's
in like full-blown psychosisand psychotic?
Speaker 2 (05:43):
someone that's in
like full-blown psychosis and
psychotic.
So well, anosognosia is usually, you know, can be a part of
psychosis and they really don'tunderstand that they have an
illness.
And that really is the numberone reason that people stop
taking medication.
So even when somebody you knowmight have gotten out of the
hospital, have been stabilizedand on the medications, well,
they usually stop taking theirmedications because they feel
(06:06):
okay and they think there'snothing wrong with me and it's
not very different than denial.
It's not that they're denyingthey have an illness.
They truly don't think thatthey're ill and it's similar to
somebody with Alzheimer's.
They don't recognize that theyhave Alzheimer's and it's sort
of you know, same way the brainworks.
These individuals do not thinkthey're ill and it's a very real
(06:28):
condition.
And so what happens whenthey're off the medication?
Eventually they do go back intopsychosis, which means they
have lost touch with reality.
What they are seeing andhearing they 100% believe to be
true.
And we know that most peoplewith serious mental illness
aren't dangerous.
That is true.
But we also know that leavingpsychosis untreated is a recipe
(06:50):
for disaster, because we don'tknow what someone is thinking
and we've had Matt stick in asdad Michael on one of our doing,
one of our peer talks, and Matttook the life of his mother and
when you listen to him talkabout it and he's very open, he
said I loved my mother.
He was not a violent person, hewould never want to hurt her,
(07:10):
but he truly believed that hehad to take her life because she
was possessed with demons.
So why are we leaving, you know, people in the community
untreated in psychosis when weknow that they have lost touch
with reality?
You cannot predict at what pointthose delusions or
hallucinations are going tobecome dangerous.
(07:31):
Some people have commandhallucinations.
We have another mom who herdaughter was.
You know hearing voices tellingher to kill her mother, who she
thought was an imposter and hadraped her.
So these are very, you know,it's very real to the person
experiencing them and you can'ttell them that it's not true or
it's not happening.
So we really need to treatpsychosis as a medical emergency
(07:54):
.
It is and unfortunately so manyof the laws don't allow us to
do that.
We have to wait until a personbecomes dangerous before we can
get them help.
Another situation we had afamily that reached out.
One person reached out 35 timesand that didn't include other
family members, 35 times plus,so say, let's say, 50 times
(08:15):
combined.
They reached out trying to gettheir loved one help who was in
psychosis, and no one would helpthem and unfortunately that led
to lives being lost.
So where really is the blamewhen people are begging for help
and you have the system youknow, folding their arms and say
, well, we can't do anything,they're not dangerous.
Speaker 1 (08:34):
So how do you get the
legislators and the people that
form these laws to change themif they don't understand?
Speaker 2 (08:45):
It really is through
education, and we're seeing that
in Massachusetts.
Massachusetts is one of thelast two states in the entire
country without an assistedoutpatient treatment law, and
what that would do?
It would allow someone to betreated in the community before
they deteriorated to the pointthat they needed inpatient
hospitalization.
So what we're doing now here inMassachusetts is we have to
(09:06):
wait until somebody gets so sickand then they're hospitalized,
and we just have to hope andpray that a tragedy doesn't
occur.
And so with an assistedoutpatient treatment law,
there's usually very strictcriteria, and it varies from
state to state on what thatcriteria may be.
It's usually that they have tohave a certain number of
hospitalizations or have beeninvolved in the criminal justice
(09:28):
system, have a diagnosis ofsevere mental illness and a
history of noncompliance, sothat they know.
You know, in all likelihood, ifthis person doesn't get help,
then they are going to end up inthe hospital.
So in Massachusetts, reallywhat it is, because we had
organizations like large mentalhealth organizations that were
actually against this becausethey were feeding the
(09:50):
legislators false information.
So what we have done is educateall of our legislators on what
is happening and how manyfamilies are actually suffering
and trying to get help whenthere is none, and they truly
didn't understand thisinformation before.
There was a recent retrial wherea police officer's life had
(10:10):
been taken and during thatretrial I had the mom reach out
to me and she said what you'renot hearing in this trial and on
the news is that my son had along history of schizophrenia.
Two weeks before this incidenthappened I was begging the
hospital to keep him and wastold that no, we asked him.
He doesn't want to hurt himselfor anybody else.
So again, I just think wherereally is the fault?
(10:32):
You know in that, and I knowthat the family of this officer.
They had no idea that thishappened and I just think as
people in the community, weshould be outraged that our
state is allowing this to happenbecause we have made it a
public safety issue.
When you have no means to treatpeople with serious mental
illness and get them the helpthey need early on, we are
(10:54):
putting everybody in thecommunity at risk.
It could be your neighbor.
Speaker 1 (10:58):
Yeah, so you say get
more understanding, more
information to these people.
Unfortunately, we're a societythat until it affects our family
it's not a problem.
So we can't wait for it toaffect some legislator or some
judges or lawyers, family to getthem to say, oh, we got to
change this.
So how do we get to thosepeople that are in charge now
(11:21):
but they don't understand?
And because they don'tunderstand, they're almost
pleading ignorance to it andjust moving forward like it's
non-existence.
Speaker 2 (11:30):
Yeah, so what I've
done in Massachusetts.
So we have Darrell Harbour,which I know you're having on
your show.
He is a peer who has lived withschizophrenia successfully for
over 40 years.
He developed a wonderful guideto psychosis and psychotic
illnesses a peer perspective, sohe explains exactly what
psychosis is and whatanosognosia is.
(11:50):
I have used that pamphlet,walked into DA's offices,
explained to them, you know,gave them my elevated pitch of
what's in that handbook andgiven them a few stories of the
tragedies we've had inMassachusetts.
And I can see it in their face.
It's like a light bulb goes offand they suddenly understand
why our state is failingterribly and we're seeing all
(12:11):
these tragedies happen inMassachusetts and I walk out
with their support for thislegislation.
So it really is, you know,building those relationships and
having these conversations withimportant people and our
legislators as well, so thatthey understand, where you know,
why our laws aren't working inMassachusetts and what needs to
(12:33):
change.
Speaker 1 (12:33):
Why do you think that
some of the legislators are
kind of afraid to take this on?
Because it does appear one ofthose things like I don't know
if I want to touch that subjector not.
Speaker 2 (12:43):
Yes, well, you know,
we're very fortunate in that we
do have some championlegislators in Massachusetts for
mental health and that havefiled these bills and supported
them.
A lot of it goes back to thedisability rights folks because
they will say well, you know,somebody should have the
autonomy to choose.
But when we're allowingpreventable suffering, that is
(13:03):
not autonomy, that's neglect.
Another example is a lot ofindividuals that end up getting
put in a state hospital forcompetency restoration.
They'll go in and they're inpsychosis and they have the CPCS
lawyers fighting there fortheir right to choose whether or
not they want to be treated.
So they will keep going againstthe medical team's advice,
(13:25):
filing for extensions topostpone these civil commitments
and leaving the individual inpsychosis much longer than they
ever should be.
That really is the mostinhumane thing you can do.
And so you're talking aboutautonomy.
But is that really autonomywhen somebody is left in
psychosis and is not competent?
In many of these situations,someone that might have gone in
(13:48):
for a misdemeanor ends upcommitting a felony while in
jail or in the state hospital,while psychotic, because they
are really not in control ofwhat they're doing.
Speaker 1 (13:58):
Okay.
So there's a couple things Iwant to go over.
But the first thing is I'veheard that the biggest hospital
in the country for mental healthis the LA prison system.
How do we change that?
We're putting these people inprison with no medical people
that don't understand it, andthey're in there going through
(14:19):
all the things they're goingthrough.
The guards think they're beingdefiant when they're really just
going through the process ofthe mental illness they have.
How can we get that changed?
Speaker 2 (14:29):
Yeah, and that is
true.
Jails and prisons have becomethe de facto mental health
institutions, and I know thatbecause I've been speaking to a
lot of the sheriffs inMassachusetts and when I ask
them well, how many people inyour jail have mental illness?
The different numbers varying70 to 90% is a number I'm
getting that people have eitherserious mental illness and or
(14:51):
substance use disorder.
That is extremely high.
So, while Massachusetts willpat themselves on the back for
decreasing the number of peoplethat are incarcerated I've asked
at webinars you know you'resaying that you're closing jails
, but can pat themselves on theback for decreasing the number
of people that are incarceratedI've asked at webinars you know
you're saying that you'reclosing jails, but can you tell
me how many people in the jailsnow have mental illness?
And they don't have an answer.
Yeah, I don't know that they'renecessarily keeping track of it,
(15:13):
but the journalists running theprisons, they know it's really
about early intervention andtreating these individuals early
on, and which is why we'readvocating so hard for an AOT
law in Massachusetts, becausethat is going to be the thing
that's going to catch peopleupstream, before they even enter
the criminal justice system.
(15:33):
There's just no need for thatto happen.
And then we also talk about theneed for more beds.
Well, if we treat peopleearlier on, we are not going to
be taking up those beds.
We're waiting till people getso sick that then they need to
be hospitalized, and you know,of course, that is then taking
up beds.
My feeling is we're not goingto need all those extra beds if
we're treating people earlier onand those beds can be left for
(15:56):
the sickest people that needthem for the longest time.
Speaker 1 (15:58):
Yeah, because at
least in the legal system, if a
person goes in front of a judgewith some serious mental illness
and then somehow they getdiverted out by a miracle, the
chances of them, non-treated, ofshowing back in front of that
same judge again is like almostlike 95% that it's gonna happen.
How do we get it across tothese legislators and judges and
(16:22):
the ADAs and DAs that byworking together and putting
these people in a situationwhere they can have an
opportunity to get better, thatit's not only going to save a
person's life, but it's going tosave the taxpayers millions of
dollars?
Speaker 2 (16:36):
Yes, absolutely, and
that's been a challenge here is
I've been trying to figure outand I've had conversations with
some judges how do I've beentrying to figure out and I've
had conversations with somejudges how do I get in there to
have these conversations?
And I know so.
In Massachusetts we'redifferent than a lot of other
parts of the country.
Our judges are not elected bythe people, they are appointed
by our governor, ok, so you know, I think that's very different
(16:59):
there and they're not able toadvocate for any legislation.
So I still haven't figured outhow to have these conversations
with our judges, but I amworking on having conversations
and meetings with DAs,prosecutors, defense attorneys,
because there really needs to besome education there, I think,
so that they understand.
(17:19):
I've sat in on a lot of trialsbecause everything is virtual as
well as in person, and I'll beamazed when I'm watching
somebody's child go in front ofthe judge and that I know has
mental illness and has, you know, been in psychosis, and there
is not, oftentimes there is not,one mention of the fact that by
(17:40):
the defense or the prosecution,that this individual has a
serious mental illness.
So what I try to do is empowerpeople, families, and teach them
how to navigate the system andto encourage them to write
letters.
And you know, really outside ofthe box thinking and I've
discussed this with judges aswell I told them at one point
(18:00):
well, I have people writeletters even when they're not a
victim in these cases, write aletter and give it to the
prosecution, and the judgelooked at me and he said, well,
that's clever.
And he said most of the timethey will read that and that
really has been improvingoutcomes for the families that
we have been working with.
Speaker 1 (18:19):
Now what about the
actual legal system?
Yeah, I'm assuming it's verysimilar because, like with
autism, if you get an autisticperson in front of a judge, the
judge doesn't understand it, theDA doesn't understand it, and
lots of times the defenseattorney doesn't understand it,
and then they're at the mercy ofwhoever that wants to hand down
the decision.
(18:39):
Is it that same way with thelegal system, with this?
Speaker 2 (18:44):
Sometimes yes and
sometimes no.
It falls on the families toeducate the defense attorney,
the prosecutor and the judge.
It really does in a lot ofthese cases, because they're not
going to have that backgroundinformation unless families get
involved, and oftentimesfamilies don't know that they're
able to do that.
No one tells you that you cando it.
It's not written anywhere andthat's why we developed our
(19:06):
caregiver's guide to put theselittle tips in there, because it
is really outside of the box,thinking in things that you can
do, one of the things you know.
Families will often feel like,well, there's nothing I can do,
and I'll always say there'salways something you can do.
It might not be something thatpeople often do, but we really
you, we really need to becreative in the way we're
(19:29):
dealing with the criminaljustice system when family
members are involved, becauseoftentimes it can mean the
difference between them beingincarcerated and serving time
versus them being on probationand having mental health
treatment.
Speaker 1 (19:46):
Now lots of times the
cycle happens like I just
described.
They'll go in front of thejudge, they'll get diverted out
for some little thing and thenthey wind up back in front of
him again.
Then the second time the judgehas that mindset of okay, I
might as well throw the book atthis guy because he doesn't get
it, when he really doesn't getthe fact that the guy or the
(20:08):
person in front of him has aserious mental illness.
So when they wind upincarcerated, then that creates
that cycle that is justdetrimental to everybody
involved.
So we've got to get past thatso that people can understand.
And that's still at thejudicial level, I would think.
Speaker 2 (20:26):
It is and I have to
say we're doing.
You know I forget.
I'm not really sure how manymental health courts we have in
Massachusetts, but those seem to.
You know we do have them insome areas.
So if you commit a crime in acity that has a mental health
court, you're pretty lucky.
If you don't, then you know youmight not be so lucky because
you're right, the judges, theprosecutors, defense attorneys
(20:50):
most of the time they don'tunderstand it.
And that's again where familiesneed to be proactive and be
involved, because it's reallyour job to educate them, because
they're not mental healthprofessionals.
Why would they necessarily knowif no one tells them?
Speaker 1 (21:04):
Right.
So we've gone from theincarcerated to the judges, to
the DAs, to the defenseattorneys.
Now the big issue, as I see it,is a larger one that people
don't understand, and that's thehomeless situation.
When you walk down the streetsand you see people living on the
streets, you think, oh, they'rebums or this or that.
(21:25):
And really a lot of them nineout of 10, I don't know if it's
that high, but I've heard it'shigh have mental illness of some
degree and they're therebecause they have no other place
to go.
So if we don't get that treatedand that under control, then
the rest of it, from that pointto the judicial system, is going
to be what it is.
Speaker 2 (21:46):
Yeah and Tony, it's
not necessarily because they
have no place to go, it'sbecause they are in psychosis
and don't want to be at home.
I had another family that I wasinvolved with NSSC and their
son was in complete psychosisafter going off his meds, left
their house.
I believe it was, like you know, in the middle of the winter.
(22:08):
In the spring he was found indowntown Boston unable to walk,
really in pretty bad shape, andthe family thought we found him.
This is great, we'll get him inthe hospital, get him back on
his medications and hopefullythings will improve from there.
But he went to the hospital,was there, and I got a call from
the dad two weeks later.
(22:28):
Their son had died in thehospital from an infection.
So he had a loving home.
He was college educated.
So it's not that theseindividuals have no place to
live.
It's an untreated psychosisthat leads them to the streets
and that's pretty sad.
When we have solutions andwe're again, we're allowing this
(22:48):
preventable suffering.
Speaker 1 (22:50):
Yeah, so we've got to
get where it starts.
Ultimately.
We always think about the legalsystem as being the bad guys
and all that, and sometimes theycan be, but the situation is,
if we don't get it treated at alocal level and get it under
control, nine chance out of 10,it's going to wind up in some
legal system and then dependsupon what happens on where they
(23:10):
wind up in the final end.
How do we get that entry level,so to speak, situation under
control?
Speaker 2 (23:17):
Well, I think that
there really needs to be more of
a focus on assisted outpatienttreatment.
Again, there's two states,massachusetts and Connecticut,
that don't have the laws.
That doesn't mean that all theother states have great AOT laws
or utilize them the way theyshould be, but my hope is is
that we're going to strengthenthese AOT laws.
(23:38):
You know it is very state bystate but and if we could see
them expand not only in onecounty but throughout the entire
state.
So that's going to be really ahard thing to do, it's going to
take some time, but it can bedone.
It's not impossible, and withcommunity behavioral health
centers, I think that we'rereally in a good position to be
(24:00):
able to do that.
I know in Massachusetts we have26 community behavioral health
centers, and so I see that as anideal situation to pass an AOT
law, because they have basicallythese types of programs already
set up within the communitybehavioral health centers for
people that can voluntarily walkin and ask for these services.
(24:20):
But we just need the mandate toprovide them to those that are
too sick to know that they needhelp.
Speaker 1 (24:26):
Okay, so now can you
use other states' legal statuses
to maybe take to yourlegislators to show them that
things need to be changed?
Speaker 2 (24:34):
Well, I mean we do
that, but it's funny in
Massachusetts people will saythey don't want to know what
other states are doing, likethat's insulting to them.
But yes, I mean we do.
Look at the cost savings.
I was at Human Advocacy CenterAOT Symposium last month and
there was someone from Alabamatalking about the cost savings
(24:55):
in two of their counties Onecounty they saved in one year
over $15 million.
Can you imagine how many peoplewe can treat and how many
services with $15 million?
Because think about it, youknow people cycling in and out
of the hospital, people beingarrested, the number of times
someone appears before a judge,how long these cases go on, the
(25:17):
individuals that areincarcerated, I mean those have
high costs associated with themand it makes no sense.
Speaker 1 (25:23):
The point I was going
to make is the end result, and
the perfect example of that istomorrow, which will be the last
that will stop that.
So can you use that and takethat to these legislators and
(25:50):
say, hey look, here's a perfectexample of the worst case
scenario.
Why wouldn't you use this sothat we don't ever see that?
Speaker 2 (25:58):
And again, you know,
I think, that we do some of that
and we have some prettyhorrific stories where somebody
killed their mother and lit themon fire on their lawn, another
one, the elderly individuals.
Their lives were taken.
So we have those horror stories.
But in Cindy's case and, by theway, the Tristan Murphy Act did
(26:20):
pass by the House and it's nowbeing on the desk of the
governor, which is great.
I hope that the rest of thecountry can take a look at that
and emulate what has been donethere, because that really is
something so tragic and nevershould have happened.
But Cindy was a great advocateand ultimately, had this law
(26:41):
passed, it's going to belife-changing for Florida in
terms of mental illness.
Speaker 1 (26:44):
All right.
So, in closing, what would youlike to let the listeners know
that you think is reallyimportant that they know about
what you're doing and what needsto be done?
Speaker 2 (26:54):
I would say that to
let listeners know that there's
always something you can do toreach out and connect with us.
We can always help you navigatea system that you might not be
familiar with.
It's nsscoalitionorg, and ourstories are powerful and it's
family stories that are going tohelp change these policies so
(27:16):
that this neglect anddiscrimination ends, and I think
that these stories are what aregoing to touch the hearts of
legislators and, once again, youknow, make that change that's
needed.
Speaker 1 (27:27):
Yeah, well, it's been
good.
I appreciate you coming on.
Speaker 2 (27:30):
Oh, and thank you for
having me, tony.
It's again.
It's been a wonderfulcollaboration and I hope we can
continue, because I really thinkyou're starting a movement.
People you know families wantto tell their stories and you're
giving them a platform to dothat.
So thank you very much.
Oh, it's been my pleasure.
Thanks again.
So thank you very much.
Speaker 1 (27:44):
Oh, it's been my
pleasure.
Thanks again.
Thanks for taking the time outof your busy schedule to listen
to our show today.
We hope that you enjoyed it asmuch as we enjoyed bringing it
(28:05):
to you.
If you know anyone that wouldlike to tell us their story,
send them to TonyMantorcomcontact then they can give us
their information so one daythey may be a guest on our show.
One more thing we ask telleveryone everywhere about why
Not Me, the world, theconversations we're having,
world, the conversations we'rehaving and the inspiration our
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guests give to everyoneeverywhere that you are not
alone in this world.