May 11, 2025 • 30 mins
Sylvia Mignon, licensed clinical social worker and professor of criminal justice, shares her heartbreaking journey navigating the mental health system while trying to secure proper care for her son with schizoaffective disorder. Despite her professional expertise, she's experienced nine years of struggling against bureaucracies that prioritize themselves over the needs of individuals with severe mental illness.
• Mental health systems and criminal justice bureaucracies often work to serve those within the system rather than clients and their families
• Many psychiatric professionals avoid treating severe mental illness, preferring conditions that respond better to medication
• Hospitals criminalize mentally ill patients they find difficult rather than transferring them to appropriate facilities
• Legal professionals need better education about mental illness to make informed decisions
• Massachusetts is closing psychiatric beds when many more are needed
• Most people with severe mental illness (75%) eventually stop taking their medication
• Support groups through organizations like Schizophrenia and Psychosis Action Alliance provide crucial help for families
• Online resources and books by family members of those with mental illness offer education and perspective
• Advocacy efforts include potential class action lawsuits against state mental health departments that fail patients
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
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 Mantour.
(00:53):
Welcome to why Not Me?
The World Humanity OverHandcuffs the Silent Crisis
special event.
Joining us today is SylviaMignon.
She is a licensed clinicalsocial worker and therapist,
licsw, who specializes inclinical work with mental health
clients, abuse survivors andindividuals with substance abuse
(01:15):
disorders and correctionalpopulation.
She is also the author ontextbooks with topics including
substance abuse treatment,family violence, child welfare
and mental illness.
With her extensive expertise,we are thrilled to welcome her
and look forward to her valuableknowledge she will share with
us.
Thanks for coming on.
Can you give us information onwhat you do?
Speaker 2 (01:37):
I'm a social worker, I'm a professor of merit of
criminal justice.
Pretty unbelievable that thisis the work I do and how little
I've been able to help my son.
Speaker 1 (01:50):
Yes, unfortunately that does happen.
Can you expand why it was thatyou got into this business?
Speaker 2 (01:57):
Well.
I grew up in a dysfunctionalhome.
I chose a career of social workto try and help other people,
and I was unable to help myfather who was a chronic
alcoholic.
So after social work school andduring social work school, I
worked in the field of substanceabuse treatment.
(02:18):
My husband and I are bothclinicians specializing in
substance abuse, and I've alwaysappreciated the power of
extending a hand to someone inneed to see the severity of
mental illness, to see theseverity of substance abuse
(02:42):
among people, and I also had theexperience of living for a year
in Mexico and seeing extremepoverty there when I was 15.
So I enjoyed teaching collegecourses in prisons, some of the
most capable students I've everhad, and a lot of my career has
(03:05):
been about talking about thingsthat most people typically don't
want to talk about.
Speaker 1 (03:12):
Yes, unfortunately, there is a definite stigma that
goes along with anything that'sassociated with mental health.
So how do we change that withmental health?
So how do we change that?
What are some of the steps thatyou've taken?
What have you seen thatactually works to help us
(03:35):
achieve what we're aiming for?
How do we get to a place wherepeople will focus on the
individual and offer help,rather than getting with the
stigma?
Speaker 2 (03:41):
Well, there's so much to be done and my son, who has
a schizoaffective disorder, isan example of someone with
severe mental illness that eventhose who work in the field
(04:02):
those who work in the fieldmental health professionals
stigmatize people at the mostsevere end of mental illness.
That's a huge problem, and wehave stigma among those
(04:34):
psychiatrists and others whopurport to want to help the
severely mentally ill.
We've created bureaucraciesthat do not work on behalf of
clients and families andfamilies.
The bureaucracies we create aredesigned to work for those who
work within those systems.
As a professor of criminaljustice, I can easily attest to
(04:58):
how the criminal justice systemworks on behalf of judges,
attorneys, probation officers,people who work in the system
and don't have enormous or muchregard for defendants and those
who must come into contact withthe system.
(05:20):
I hark back to the work of asociologist, max Weber, who did
a lot of work on bureaucracy,and the idea of developing
bureaucracy is about making workmore efficient, how to get
(05:40):
things done.
But what's happened in themental health field and criminal
justice is that thebureaucracies work on behalf of
themselves, leaving defendants,clients and their families
without the help they need.
So, yes, we need more educationof how people who are different
(06:07):
, people who need extra help andI fear we're going to see
families without the help theyneed- how do we bring everyone
together when each person holdstheir own views and ideas?
Speaker 1 (06:23):
Often it's just a matter of perception People see
things a certain way, even ifthat's not the full picture.
So how do we shift that outlookand show what's really going on
?
And how can we encourage thebureaucracy to ease up a bit and
be a little more open with withwhat can help the people that
need it the most?
Speaker 2 (06:44):
Well, we do that by modeling interventions and
behaviors.
I'm happy to say there arestill a number of people working
in criminal justice and in themental health field who are
committed to working withindividuals and families.
(07:07):
So we do that one client at atime.
We do that by speaking outabout the things that are not
working well.
I'll give you an example.
In Massachusetts, the governorhas decided to close a 16-bed
(07:29):
psychiatric unit on Cape Codcalled Potassant Mental Health.
I worked with people who workedthere over 40 years ago and now
it's too expensive and now theywant to cut the staffing.
It shows incredible ignoranceto think that Massachusetts can
(07:53):
do with fewer psychiatric bedswhen many more are needed.
The other day there was theopportunity to come before
officials and talk about whatshould happen.
A lot of people came.
(08:14):
They stood up, they spokeagainst this.
They told the stories ofclients and families who need
these services.
There were people who came inthe flesh, people who came via
Zoom.
I was one of the Zoom folks.
That's how I know.
(08:35):
So standing up is a criticalpart of getting attention.
But I've also seen politicallywhen people are so concerned
about their own needs, when theydon't have enough to eat, when
they don't have adequate housing.
(08:55):
It's very difficult to beconcerned about problems of
others, and that's what we seemto be doing in politics today.
Rather than focusing on allthat we have in common, some of
the other things we do is wepromote programs that look to
(09:23):
identify the things we have incommon.
For example, I've practicedyoga for 39 years and I teach
yoga at my local senior center.
Yoga practices talk about theimportance of coming together,
of supporting one another, ofbeing aware of what's happening
(09:50):
around the world and stayingengaged.
Too easy these days to say I'vegot my, I got what I need.
See you, bye.
Speaker 1 (10:01):
Yes, unfortunately.
I've said many times, thiscountry is a country that it's
not a problem until it affectsour family.
How do you think we can changethe mindset of those that don't
see the urgency or the need?
Sometimes people have torealize it's not about our kids
(10:24):
having mental illness.
It can be the ones thatsurround them.
It affects our families in somany different ways.
With that said, it actuallyaffects our whole community in
ways that we don't see itsometimes.
What kind of proactive steps doyou think we can take to make a
change that ultimately willhelp everyone?
Speaker 2 (10:48):
I'm not optimistic about that happening in the
current political climate.
Those who are politicians couldbe willing to learn more about
mental illness.
Recently, when my son was inthe hospital and they were not
(11:10):
treating him appropriately andthey were not treating him
appropriately they began tocharge him with assault and
battery against other patientsand staff.
They were doing thatintentionally, tony, to rid
themselves of a patient theythought was very difficult this.
(11:32):
My son belonged at the stateWorcester Recovery Center where
they had the staff to handle him, and this hospital could not
arrange for him to betransferred.
I worked for months.
I called the Commissioner ofMental Health of Massachusetts.
(11:55):
I called the medical directorsthere.
I worked very, very hard.
Did I call my legislator?
Absolutely Nobody cared enough.
(12:19):
They looked the other way.
Bringing 14 assault, batterycharges against someone in
psychosis is a real attentiongetter.
It has resulted in my son beingput in jail when he has severe
mental illness.
He had no history of violenceprior to his stay in the
hospital.
So we're pointing out that thisparticular hospital was not
(12:44):
willing or able to treat my sonappropriately.
They were not able to providecare, they were not able to get
him to a place that couldprovide care, and so we need to
work more at educating peoplewho work with the mentally ill.
Speaker 1 (13:10):
What were some of the things that you saw during your
son's stay at the hospital?
Speaker 2 (13:15):
Each time I went to visit my son, I ended up saying
to the staff your staff isundereducated and undertrained
to know what psychosis is, sothat's a really important place
to start.
Historically, psychiatristshave not looked forward to
(13:40):
treating the most severelymentally ill.
The most severely mentally illare those with bipolar disorder
and those with a schizophreniaspectrum disorder.
Those who have a schizophreniaspectrum disorder about 1% of
the global population.
(14:02):
That means a lot of mentalhealth professionals do not
regularly come in contact withpeople with schizophrenia,
unless they choose that as aspecialty, unless they have that
as a special interest.
(14:23):
Same is true for psychiatrichospitals, the smaller private
places.
They want to treat depression,they want to treat anxiety with
pills and they are not preparedfor the most severely mentally
ill.
So we need to do more toprepare those mental health
(14:49):
professionals and you may beaware, Tony, that the field of
mental health treatment ismoving in the direction of
training more psychiatric nursepractitioners.
They are much to engage with aseverely mentally ill than the
(15:15):
typical psychiatrist.
It's become a sad joke.
What's the difference between apsychiatrist and a psychiatric
nurse practitioner?
The psychiatric nursepractitioner is willing to hold
you back.
You know they're willing toengage and be helpful.
Speaker 1 (15:39):
Well, at least we are getting some people out there
that continue to try and do whatthey need so they can help.
Speaker 2 (15:47):
Absolutely.
Speaker 1 (15:49):
The bottom line is we just need people that are
willing to get out there, stepup and help any way they can.
Speaker 2 (15:57):
We need people to step up and help and who know
how to help.
I'm the author of fivetextbooks.
I'd love to have been anovelist, but I don't know how
to do that.
So I have two textbooks onsubstance abuse, I have a
textbook on child welfare and mymost recent book is called
(16:24):
Social Work and Mental HealthEvidence-Based Policy and
Practice, and it's with Springer.
So my book won an award and nowI've just signed a contract to
write a second edition of that.
So as a textbook it will beused in social work courses,
(16:49):
courses, bsw and MSW courses.
I feel it's very important toput information out there, and I
like Springer as a publisherbecause not only do they like
(17:10):
the real world stories of whatit means to have mental illness,
what it means to be a familymember of someone with mental
illness Most people, as you knowjust don't know.
Speaker 1 (17:35):
Yes, for sure, it's what I call the big unknown it
is.
I use that because I talk witha lot of people that are in the
autistic communities?
Yes, and the thing that they gothrough is when they first find
out their child is autistic.
It's the big unknown.
They don't know what to do, whoto call.
They are just totally confusedand afraid of what to do.
I see those with mental illnessare the same.
(17:56):
They are in the unknown and notsure what to do, facing a
scenario that they never thoughtthey would ever see.
Yeah, so, with that said, whatwould you tell those families
that are just first finding outthat their child may have some
mental illness?
What are some of the basicsteps to start?
Speaker 2 (18:23):
It's hard to say what's the most important, but I
would recommend going online.
There's a lot of goodinformation on schizophrenia and
bipolar disorder online.
There are books written byfamily members, even those who
have someone with schizophreniain their family.
There are books and articleswritten by people who have
(18:44):
schizophrenia.
So there's the education piece,and then the next piece is the
support, and then the next pieceis the support Locating the
people who understand you,locating the people who have
been where you are.
(19:05):
I'm the queen of support groups.
I've been doing four groups, sopeople who helped me when I
started five years ago.
Now I'm a facilitator for theSchizophrenia and Psychosis
Action Alliance.
Now I can pass on the wisdomI've acquired from others, and
(19:32):
that's of critical importance.
Today there are support groupsfor people who have
schizophrenia and bipolar.
Schizophrenia and PsychosisAction Alliance has really
ramped up their support groups.
They have groups for families.
(19:54):
Now they're working to get asibling support group.
The National Alliance on MentalIllness offers support groups.
There are local vendors ofmental health services that
offer support groups and they'refree of charge, so that's huge.
Speaker 1 (20:17):
Yes, the best thing that people can do is reach out
to all these organizations andfind out as much as they
possibly can about it.
You had mentioned your son.
Can you give us a littleinformation on him?
Speaker 2 (20:31):
My son is 27.
He's been sick for nine years.
Our family has had nine yearsof hell trying to help him, tony
, and just last week, from jail,he said you know, mom, I don't
think all you're doing is reallyhelping me.
(20:55):
And I had to say I agree, Ithink you're right.
I have worked tirelessly theequivalent of more than a
full-on job, and as ill as myson is, he came forth with what
(21:15):
I thought was an extremelymeaningful insight.
Speaker 1 (21:20):
So, in this situation , what can you do?
You've tried everything, you'vethought about everything.
You look back and realize thateverything that you've done has
been for him.
Speaker 2 (21:35):
What's the potential for the future?
Well, I'm in between now.
We were in court recently.
I had a beautiful letter fromAnn Corcoran to the judge about
the importance of treatment.
I was encouraged to write aletter to the judge myself just
(21:56):
one page, which I did and whenwe went to court, my efforts
were refused.
I was not allowed to submitAnn's letter, I was not allowed
to submit my own letter askingfor mental health treatment for
(22:17):
my son.
Now, why do you think a judgewould refuse to get more
information?
Spending most of my career asan academic and a professor, I
think having information isreally important.
Having facts, different pointsof view Isn't that something
(22:43):
that we want to equate withjustice and even-handedness and
equity?
I thought that was a prettyprofound message there and it's
a strong reminder.
As Anne's letter pointed, outthe importance of educating
(23:04):
judges about mental illness, ofeducating defense attorneys,
assistant district attorneys,prosecutors.
The need is enormous.
Speaker 1 (23:19):
Yes, I agree 100%.
Judges, lawyers, everyoneinvolved in a legal system needs
to have a better understandingof mental illness and how to
work within the system, butstill come up with something
that's going to help people.
Speaker 2 (23:37):
So the more knowledge they have, hopefully, the
better off we are off we are,but may not want to and may make
a conscious choice to reject.
It's painful, extremely painful, you know.
(23:58):
Of course it's very painful tobe in court with your child
who's so ill, who's in shacklesand handcuffs, looking horrific
and being told what you have tosay is not important.
Speaker 1 (24:10):
Yeah, so in closing, what would you like to tell the
listeners that you think is veryimportant for them to hear?
Some may be going throughsimilar situations that you have
seen, so what do you think isimportant for them to hear?
Speaker 2 (24:26):
I think we've made the point and I'm sure most of
your guests have the importanceof educating yourself, the
importance of picking andchoosing what you choose to
share with others, especiallyfamily.
You know most people.
I say my son has severe mentalillness.
(24:47):
I don't give the diagnosisbecause people find that
frightening.
They think someone with severemental illness is going to be
violent.
So we need to pick and choose,decide what we will share and do
our real sharing with thesupport groups we choose to
(25:11):
participate in.
And let's remember that thesenational organizations, such as
the National Shattering SilenceCoalition, the word is spreading
the advocacy when we can cometogether and work together.
I'm working with a woman who'sa dear friend now I met on the
(25:35):
support group.
We are trying to see whether itwill be possible to bring a
class action lawsuit against theMassachusetts Department of
Mental Health that failed somany clients, so many of their
families and I have to say,working in criminal justice,
(26:00):
tony, I'm the least litigiousperson I know, but we know what
we need to do.
We know the importance ofbringing people together who
have been impacted, sharing thestories.
Speaker 1 (26:18):
Yes, that's huge.
I think that's a very goodthing for people to get together
, tell their stories.
This way, they know they're notalone in their fight.
The one common thing I hearfrom most everyone I speak with
is how they think the system isfractured and it's just a
nightmare to navigate throughthe whole thing for their
(26:38):
children.
Speaker 2 (26:40):
Yes, and you know, oftentimes experts say it's a
broken system.
Well, in reality it neverworked.
No one ever cared enough tohave a smooth working system.
If we did, we would have anadequate number of psychiatric
(27:04):
beds in every state.
There is no state that has anadequate number for those with
severe mental illness, those whoexperience psychosis.
Now we discriminate in terms ofthe availability of medications
(27:26):
.
Some of these medications, ashot can cost thousands of
dollars.
How many people have access tothat?
My son is one of those whoneeds to be medicated against
his will In Massachusetts.
While he did well in the grouphome for two years, he decided
(27:52):
not to take the medicationanymore.
Seventy-five percent of peoplewith severe mental illness come
off the medication on their own,and you know what they said in
his group poem it's his basichuman right to refuse medication
(28:15):
.
We met with them.
My husband and I begged themsaid you don't know what can
happen.
Basic human right.
Speaker 1 (28:27):
Yeah, exactly.
Well, this has been a greatconversation and a lot of great
information.
I do appreciate you taking thetime to come on.
Speaker 2 (28:37):
Well, I appreciate you, Tony.
You have so many skills.
I enjoyed reading about you.
Speaker 1 (28:43):
Well, just trying to take and do my part to make a
difference, if I can.
Speaker 2 (28:48):
And you are doing that.
That's much appreciated.
Speaker 1 (28:52):
Yeah Well, thanks for coming on.
Like I said, I appreciate it.
Speaker 2 (28:55):
Thank you very much.
Speaker 1 (28:57):
Oh, the pleasure's been all mine.
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
to you.
If you know anyone that wouldlike to tell us their story,
(29:20):
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 and
(29:41):
the inspiration our guests giveto everyone everywhere that you
are not alone in this world.
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 Mantour.
(00:53):
Welcome to why Not Me?
The World Humanity OverHandcuffs the Silent Crisis
special event.
Joining us today is SylviaMignon.
She is a licensed clinicalsocial worker and therapist,
licsw, who specializes inclinical work with mental health
clients, abuse survivors andindividuals with substance abuse
(01:15):
disorders and correctionalpopulation.
She is also the author ontextbooks with topics including
substance abuse treatment,family violence, child welfare
and mental illness.
With her extensive expertise,we are thrilled to welcome her
and look forward to her valuableknowledge she will share with
us.
Thanks for coming on.
Can you give us information onwhat you do?
Speaker 2 (01:37):
I'm a social worker, I'm a professor of merit of
criminal justice.
Pretty unbelievable that thisis the work I do and how little
I've been able to help my son.
Speaker 1 (01:50):
Yes, unfortunately that does happen.
Can you expand why it was thatyou got into this business?
Speaker 2 (01:57):
Well.
I grew up in a dysfunctionalhome.
I chose a career of social workto try and help other people,
and I was unable to help myfather who was a chronic
alcoholic.
So after social work school andduring social work school, I
worked in the field of substanceabuse treatment.
(02:18):
My husband and I are bothclinicians specializing in
substance abuse, and I've alwaysappreciated the power of
extending a hand to someone inneed to see the severity of
mental illness, to see theseverity of substance abuse
(02:42):
among people, and I also had theexperience of living for a year
in Mexico and seeing extremepoverty there when I was 15.
So I enjoyed teaching collegecourses in prisons, some of the
most capable students I've everhad, and a lot of my career has
(03:05):
been about talking about thingsthat most people typically don't
want to talk about.
Speaker 1 (03:12):
Yes, unfortunately, there is a definite stigma that
goes along with anything that'sassociated with mental health.
So how do we change that withmental health?
So how do we change that?
What are some of the steps thatyou've taken?
What have you seen thatactually works to help us
(03:35):
achieve what we're aiming for?
How do we get to a place wherepeople will focus on the
individual and offer help,rather than getting with the
stigma?
Speaker 2 (03:41):
Well, there's so much to be done and my son, who has
a schizoaffective disorder, isan example of someone with
severe mental illness that eventhose who work in the field
(04:02):
those who work in the fieldmental health professionals
stigmatize people at the mostsevere end of mental illness.
That's a huge problem, and wehave stigma among those
(04:34):
psychiatrists and others whopurport to want to help the
severely mentally ill.
We've created bureaucraciesthat do not work on behalf of
clients and families andfamilies.
The bureaucracies we create aredesigned to work for those who
work within those systems.
As a professor of criminaljustice, I can easily attest to
(04:58):
how the criminal justice systemworks on behalf of judges,
attorneys, probation officers,people who work in the system
and don't have enormous or muchregard for defendants and those
who must come into contact withthe system.
(05:20):
I hark back to the work of asociologist, max Weber, who did
a lot of work on bureaucracy,and the idea of developing
bureaucracy is about making workmore efficient, how to get
(05:40):
things done.
But what's happened in themental health field and criminal
justice is that thebureaucracies work on behalf of
themselves, leaving defendants,clients and their families
without the help they need.
So, yes, we need more educationof how people who are different
(06:07):
, people who need extra help andI fear we're going to see
families without the help theyneed- how do we bring everyone
together when each person holdstheir own views and ideas?
Speaker 1 (06:23):
Often it's just a matter of perception People see
things a certain way, even ifthat's not the full picture.
So how do we shift that outlookand show what's really going on
?
And how can we encourage thebureaucracy to ease up a bit and
be a little more open with withwhat can help the people that
need it the most?
Speaker 2 (06:44):
Well, we do that by modeling interventions and
behaviors.
I'm happy to say there arestill a number of people working
in criminal justice and in themental health field who are
committed to working withindividuals and families.
(07:07):
So we do that one client at atime.
We do that by speaking outabout the things that are not
working well.
I'll give you an example.
In Massachusetts, the governorhas decided to close a 16-bed
(07:29):
psychiatric unit on Cape Codcalled Potassant Mental Health.
I worked with people who workedthere over 40 years ago and now
it's too expensive and now theywant to cut the staffing.
It shows incredible ignoranceto think that Massachusetts can
(07:53):
do with fewer psychiatric bedswhen many more are needed.
The other day there was theopportunity to come before
officials and talk about whatshould happen.
A lot of people came.
(08:14):
They stood up, they spokeagainst this.
They told the stories ofclients and families who need
these services.
There were people who came inthe flesh, people who came via
Zoom.
I was one of the Zoom folks.
That's how I know.
(08:35):
So standing up is a criticalpart of getting attention.
But I've also seen politicallywhen people are so concerned
about their own needs, when theydon't have enough to eat, when
they don't have adequate housing.
(08:55):
It's very difficult to beconcerned about problems of
others, and that's what we seemto be doing in politics today.
Rather than focusing on allthat we have in common, some of
the other things we do is wepromote programs that look to
(09:23):
identify the things we have incommon.
For example, I've practicedyoga for 39 years and I teach
yoga at my local senior center.
Yoga practices talk about theimportance of coming together,
of supporting one another, ofbeing aware of what's happening
(09:50):
around the world and stayingengaged.
Too easy these days to say I'vegot my, I got what I need.
See you, bye.
Speaker 1 (10:01):
Yes, unfortunately.
I've said many times, thiscountry is a country that it's
not a problem until it affectsour family.
How do you think we can changethe mindset of those that don't
see the urgency or the need?
Sometimes people have torealize it's not about our kids
(10:24):
having mental illness.
It can be the ones thatsurround them.
It affects our families in somany different ways.
With that said, it actuallyaffects our whole community in
ways that we don't see itsometimes.
What kind of proactive steps doyou think we can take to make a
change that ultimately willhelp everyone?
Speaker 2 (10:48):
I'm not optimistic about that happening in the
current political climate.
Those who are politicians couldbe willing to learn more about
mental illness.
Recently, when my son was inthe hospital and they were not
(11:10):
treating him appropriately andthey were not treating him
appropriately they began tocharge him with assault and
battery against other patientsand staff.
They were doing thatintentionally, tony, to rid
themselves of a patient theythought was very difficult this.
(11:32):
My son belonged at the stateWorcester Recovery Center where
they had the staff to handle him, and this hospital could not
arrange for him to betransferred.
I worked for months.
I called the Commissioner ofMental Health of Massachusetts.
(11:55):
I called the medical directorsthere.
I worked very, very hard.
Did I call my legislator?
Absolutely Nobody cared enough.
(12:19):
They looked the other way.
Bringing 14 assault, batterycharges against someone in
psychosis is a real attentiongetter.
It has resulted in my son beingput in jail when he has severe
mental illness.
He had no history of violenceprior to his stay in the
hospital.
So we're pointing out that thisparticular hospital was not
(12:44):
willing or able to treat my sonappropriately.
They were not able to providecare, they were not able to get
him to a place that couldprovide care, and so we need to
work more at educating peoplewho work with the mentally ill.
Speaker 1 (13:10):
What were some of the things that you saw during your
son's stay at the hospital?
Speaker 2 (13:15):
Each time I went to visit my son, I ended up saying
to the staff your staff isundereducated and undertrained
to know what psychosis is, sothat's a really important place
to start.
Historically, psychiatristshave not looked forward to
(13:40):
treating the most severelymentally ill.
The most severely mentally illare those with bipolar disorder
and those with a schizophreniaspectrum disorder.
Those who have a schizophreniaspectrum disorder about 1% of
the global population.
(14:02):
That means a lot of mentalhealth professionals do not
regularly come in contact withpeople with schizophrenia,
unless they choose that as aspecialty, unless they have that
as a special interest.
(14:23):
Same is true for psychiatrichospitals, the smaller private
places.
They want to treat depression,they want to treat anxiety with
pills and they are not preparedfor the most severely mentally
ill.
So we need to do more toprepare those mental health
(14:49):
professionals and you may beaware, Tony, that the field of
mental health treatment ismoving in the direction of
training more psychiatric nursepractitioners.
They are much to engage with aseverely mentally ill than the
(15:15):
typical psychiatrist.
It's become a sad joke.
What's the difference between apsychiatrist and a psychiatric
nurse practitioner?
The psychiatric nursepractitioner is willing to hold
you back.
You know they're willing toengage and be helpful.
Speaker 1 (15:39):
Well, at least we are getting some people out there
that continue to try and do whatthey need so they can help.
Speaker 2 (15:47):
Absolutely.
Speaker 1 (15:49):
The bottom line is we just need people that are
willing to get out there, stepup and help any way they can.
Speaker 2 (15:57):
We need people to step up and help and who know
how to help.
I'm the author of fivetextbooks.
I'd love to have been anovelist, but I don't know how
to do that.
So I have two textbooks onsubstance abuse, I have a
textbook on child welfare and mymost recent book is called
(16:24):
Social Work and Mental HealthEvidence-Based Policy and
Practice, and it's with Springer.
So my book won an award and nowI've just signed a contract to
write a second edition of that.
So as a textbook it will beused in social work courses,
(16:49):
courses, bsw and MSW courses.
I feel it's very important toput information out there, and I
like Springer as a publisherbecause not only do they like
(17:10):
the real world stories of whatit means to have mental illness,
what it means to be a familymember of someone with mental
illness Most people, as you knowjust don't know.
Speaker 1 (17:35):
Yes, for sure, it's what I call the big unknown it
is.
I use that because I talk witha lot of people that are in the
autistic communities?
Yes, and the thing that they gothrough is when they first find
out their child is autistic.
It's the big unknown.
They don't know what to do, whoto call.
They are just totally confusedand afraid of what to do.
I see those with mental illnessare the same.
(17:56):
They are in the unknown and notsure what to do, facing a
scenario that they never thoughtthey would ever see.
Yeah, so, with that said, whatwould you tell those families
that are just first finding outthat their child may have some
mental illness?
What are some of the basicsteps to start?
Speaker 2 (18:23):
It's hard to say what's the most important, but I
would recommend going online.
There's a lot of goodinformation on schizophrenia and
bipolar disorder online.
There are books written byfamily members, even those who
have someone with schizophreniain their family.
There are books and articleswritten by people who have
(18:44):
schizophrenia.
So there's the education piece,and then the next piece is the
support, and then the next pieceis the support Locating the
people who understand you,locating the people who have
been where you are.
(19:05):
I'm the queen of support groups.
I've been doing four groups, sopeople who helped me when I
started five years ago.
Now I'm a facilitator for theSchizophrenia and Psychosis
Action Alliance.
Now I can pass on the wisdomI've acquired from others, and
(19:32):
that's of critical importance.
Today there are support groupsfor people who have
schizophrenia and bipolar.
Schizophrenia and PsychosisAction Alliance has really
ramped up their support groups.
They have groups for families.
(19:54):
Now they're working to get asibling support group.
The National Alliance on MentalIllness offers support groups.
There are local vendors ofmental health services that
offer support groups and they'refree of charge, so that's huge.
Speaker 1 (20:17):
Yes, the best thing that people can do is reach out
to all these organizations andfind out as much as they
possibly can about it.
You had mentioned your son.
Can you give us a littleinformation on him?
Speaker 2 (20:31):
My son is 27.
He's been sick for nine years.
Our family has had nine yearsof hell trying to help him, tony
, and just last week, from jail,he said you know, mom, I don't
think all you're doing is reallyhelping me.
(20:55):
And I had to say I agree, Ithink you're right.
I have worked tirelessly theequivalent of more than a
full-on job, and as ill as myson is, he came forth with what
(21:15):
I thought was an extremelymeaningful insight.
Speaker 1 (21:20):
So, in this situation , what can you do?
You've tried everything, you'vethought about everything.
You look back and realize thateverything that you've done has
been for him.
Speaker 2 (21:35):
What's the potential for the future?
Well, I'm in between now.
We were in court recently.
I had a beautiful letter fromAnn Corcoran to the judge about
the importance of treatment.
I was encouraged to write aletter to the judge myself just
(21:56):
one page, which I did and whenwe went to court, my efforts
were refused.
I was not allowed to submitAnn's letter, I was not allowed
to submit my own letter askingfor mental health treatment for
(22:17):
my son.
Now, why do you think a judgewould refuse to get more
information?
Spending most of my career asan academic and a professor, I
think having information isreally important.
Having facts, different pointsof view Isn't that something
(22:43):
that we want to equate withjustice and even-handedness and
equity?
I thought that was a prettyprofound message there and it's
a strong reminder.
As Anne's letter pointed, outthe importance of educating
(23:04):
judges about mental illness, ofeducating defense attorneys,
assistant district attorneys,prosecutors.
The need is enormous.
Speaker 1 (23:19):
Yes, I agree 100%.
Judges, lawyers, everyoneinvolved in a legal system needs
to have a better understandingof mental illness and how to
work within the system, butstill come up with something
that's going to help people.
Speaker 2 (23:37):
So the more knowledge they have, hopefully, the
better off we are off we are,but may not want to and may make
a conscious choice to reject.
It's painful, extremely painful, you know.
(23:58):
Of course it's very painful tobe in court with your child
who's so ill, who's in shacklesand handcuffs, looking horrific
and being told what you have tosay is not important.
Speaker 1 (24:10):
Yeah, so in closing, what would you like to tell the
listeners that you think is veryimportant for them to hear?
Some may be going throughsimilar situations that you have
seen, so what do you think isimportant for them to hear?
Speaker 2 (24:26):
I think we've made the point and I'm sure most of
your guests have the importanceof educating yourself, the
importance of picking andchoosing what you choose to
share with others, especiallyfamily.
You know most people.
I say my son has severe mentalillness.
(24:47):
I don't give the diagnosisbecause people find that
frightening.
They think someone with severemental illness is going to be
violent.
So we need to pick and choose,decide what we will share and do
our real sharing with thesupport groups we choose to
(25:11):
participate in.
And let's remember that thesenational organizations, such as
the National Shattering SilenceCoalition, the word is spreading
the advocacy when we can cometogether and work together.
I'm working with a woman who'sa dear friend now I met on the
(25:35):
support group.
We are trying to see whether itwill be possible to bring a
class action lawsuit against theMassachusetts Department of
Mental Health that failed somany clients, so many of their
families and I have to say,working in criminal justice,
(26:00):
tony, I'm the least litigiousperson I know, but we know what
we need to do.
We know the importance ofbringing people together who
have been impacted, sharing thestories.
Speaker 1 (26:18):
Yes, that's huge.
I think that's a very goodthing for people to get together
, tell their stories.
This way, they know they're notalone in their fight.
The one common thing I hearfrom most everyone I speak with
is how they think the system isfractured and it's just a
nightmare to navigate throughthe whole thing for their
(26:38):
children.
Speaker 2 (26:40):
Yes, and you know, oftentimes experts say it's a
broken system.
Well, in reality it neverworked.
No one ever cared enough tohave a smooth working system.
If we did, we would have anadequate number of psychiatric
(27:04):
beds in every state.
There is no state that has anadequate number for those with
severe mental illness, those whoexperience psychosis.
Now we discriminate in terms ofthe availability of medications
(27:26):
.
Some of these medications, ashot can cost thousands of
dollars.
How many people have access tothat?
My son is one of those whoneeds to be medicated against
his will In Massachusetts.
While he did well in the grouphome for two years, he decided
(27:52):
not to take the medicationanymore.
Seventy-five percent of peoplewith severe mental illness come
off the medication on their own,and you know what they said in
his group poem it's his basichuman right to refuse medication
(28:15):
.
We met with them.
My husband and I begged themsaid you don't know what can
happen.
Basic human right.
Speaker 1 (28:27):
Yeah, exactly.
Well, this has been a greatconversation and a lot of great
information.
I do appreciate you taking thetime to come on.
Speaker 2 (28:37):
Well, I appreciate you, Tony.
You have so many skills.
I enjoyed reading about you.
Speaker 1 (28:43):
Well, just trying to take and do my part to make a
difference, if I can.
Speaker 2 (28:48):
And you are doing that.
That's much appreciated.
Speaker 1 (28:52):
Yeah Well, thanks for coming on.
Like I said, I appreciate it.
Speaker 2 (28:55):
Thank you very much.
Speaker 1 (28:57):
Oh, the pleasure's been all mine.
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
to you.
If you know anyone that wouldlike to tell us their story,
(29:20):
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 and
(29:41):
the inspiration our guests giveto everyone everywhere that you
are not alone in this world.
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