Guest Joel Corcoran, Executive Director of Clubhouse International

Clubhouse International:

A Clubhouse is an evidence-based-practice founded on the belief that even the most disabled can sufficiently recover and improve their lives with the help of a supportive community. The Clubhouse model provides pathways to meaningful social inclusion, work and wellbeing. First developed in New York in 1948 by a small group of former psychiatric hospital patients, the model has gained international recognition, scaling to more than 350 Clubhouses operating in 32 countries and growing.

“We help start and grow Clubhouses globally where people with mental illness can go to get their lives back.

There simply are not enough resources today for everyone with a mental illness who needs help. It’s a crisis situation and the numbers are growing.

Clubhouses powerfully demonstrate that people with mental illness can and do lead productive, happy lives. Each Clubhouse we open reaches +/- 500 

1. How does the Clubhouse program fit into the larger mental health system?
2. Sometimes the Clubhouse program is referred to as a peer led program. Is that accurate?
3. What kind of things does a Clubhouse do for someone living with mental illness?
4. What can a person joining a Clubhouse for the first time expect? 
5. Who is eligible for Clubhouse membership and what is expected of those who belong?
6. What is the long term vision of Clubhouse International?
7. How do Clubhouses get started?

Links:

https://clubhouse-intl.org/

Who Are the 3 Moms?

Randye Kaye -Broadcaster, Actress, Voice Talent, Speaker, and Author (“Ben Behind his Voices”)

Miriam Feldman – Artist, Mom, Author “He Came in With It”

Mindy Greiling – member of the Minnesota House of Representatives for twenty years. Activist, Legislator, Author (“Fix What You Can“)

Getting personal on this episode about the effects of addiction (drugs or alcohol) on the family - and the double challenge when it co-occurs with SMI (Serios Mental Illness) - in our sons’ cases: schizophrenia.

Are we ever really out of the woods? Are our loved ones?

What can we do? What must we let go of?

The 3 moms get personal here. Solutions? We wish we had some - but we do share ideas of actions and attitude. 

Maybe you’ll hear your story inside of ours. You are not alone.

-----------

What is dual diagnosis? (Co-occuring disorder)

What works? What doesn’t? - 

• “Harm reduction” treatment?
• 12-step programs?

Why is it so hard?

• Similar symptoms - delayed SMI diagnosisGrief
• Grief, Lost Trust, lost time
• Relapse disappointment
• Stronger drugs now 

What can the family do?

• “Trust, but verify” - blood tests, Urine tests
• Set your boundaries/rewards/consequences 
• Do what works - even if your break the rules you thought you knew
• Balance of letting go/stepping in
• Support a healthier community and purposeful activity for our loved ones
• Get support or help for yourself (the family) - AlAnon? Therapy?
• “Know that you’re dealing with something unknowable, and do the best you can” (Mimi)
• Look for Integrated Care for your loved one - treats both diagnoses together
• Keep watching carefully
• Be aware (and providers be aware) that what looks like “just substance abuse” may indeed be early symptoms of SMI - alert the family

Links:

Dr. Laitman - listen to our episode 18, June 2021

Samhsa has resources: 1-800-662-HELP

https://www.samhsa.gov/families

NAMI:

www.nami.org

https://nami.org/About-Mental-Illness/Common-with-Mental-Illness/Substance-Use-Disorders

Cedar Ridge: https://www.meridianprograms.com/program/cedar-ridge-mens-residential-stillwater-mn/

NAMI Family-to-Family

https://nami.org/Support-Education/Mental-Health-Education/NAMI-Family-to-Family

Book: Beautiful Boy

https://www.amazon.com/Beautiful-Boy-Fathers-Journey-Addiction/dp/0547203888

Who Are the 3 Moms?

Randye Kaye -Broadcaster, Actress, Voice Talent, Speaker, and Author (“Ben Behind his Voices”)

Miriam Feldman – Artist, Mom, Author “He Came in With It”

Mindy Greiling – member of the Minnesota House of Representatives for twenty years. Activist, Legislator, Author (“Fix What You Can“)

Guest: Katie Sanford , blogger, "Not Like the Others"

“You raise expectations, and raised expectations are what people need.” - Mindy

From Katie's blog:

"Throughout the course of my life with schizoaffective disorder, I have always been considered high functioning. But high functioning doesn’t mean my life is normal or even symptom-free. "

Katie Sanford is a blogger and advocate living with schizoaffective disorder who uses her insights and experiences to  promote a deeper understanding of schizophrenia-spectrum disorders. She details her experiences on her blog, Not Like The Others, and is also an ambassador for NAMI Chicago involved with Crisis Intervention Training. She has been a guest speaker for college classes, webinars, and podcasts, and her story has been featured on platforms like Women's Health Online.

Questions:

Tell us Your Story!

How does schizoaffective disorder impact you at work?

How does it impact your relationships?

Is an outcome like yours possible for everyone?

And why do you think it's important for people to hear from individuals with lived experience?

What role has family played for you in your recovery? - support, treatment, early diagnosis

Advice for practitioners? - Believe your  patients more

From article she wrote for The Mighty: 

“Receiving a mental health diagnosis isn’t the end of your life, it’s just the beginning of a new chapter. But it may be daunting or terrifying. When I was diagnosed with schizoaffective disorder, I had no idea what my future would look like...While my mind went spinning into denial, fear and acceptance that life as I knew it was over, a part of me clung to hope and refused to give up.

Hope wasn’t enough to solve all my problems.”

Links:

https://katiesanford.net/wp/

https://themighty.com/

Who Are the 3 Moms?

Randye Kaye -Broadcaster, Actress, Voice Talent, Speaker, and Author (“Ben Behind his Voices”)

Miriam Feldman – Artist, Mom, Author “He Came in With It”

Mindy Greiling – member of the Minnesota House of Representatives for twenty years. Activist, Legislator, Author (“Fix What You Can“)

If you care for someone with a diagnosed serious mental illness (SMI) , you know that it isn’t easy to help them begin, or continue, treatment.

You hear “I’m not sick! I don’t need help!”

That phrase inspired our guest to find a way, write a book, and create a movement.

Dr. Xavier Amador is a world-renowned clinical psychologist & forensic expert, and a Family caregiver of relatives with schizophrenia and bipolar. He founded NAMI’s Scientific Council, helped to launch Family-to-Family, Peer-to-Peer  & In Our Own Voices, and wrote the book I AM NOT SICK I Don’t Need Help! 

We talk about:

• Dr. Amador’s family story: his brother Henry, and his son, with Schizophrenia
• What do we do when our loved one says I am not sick, I don't need help?
• Listening: without judgment, and with respect.
• Anosognosia, and how to approach someone who has it
• The Henry Amador Center on Anosognosia  
• The power of your relationship
• Changes - and changes needed - in the mental health system
• Takeaways from the input from families and also people with mental illness?
• Diffusing Anger
• 3 A’s: Apologize, Acknowledge, Agree (to disagree)
• Crisis Communication v. long-term communication
• The LEAP method (listen, Empathise, Agree, Partner) and how families - and law enforcement - can be trained
• Role-play: Addressing Covid Vaccine reluctance with relative with SMI 
• LAI (long-acting injectables) vs. pills every day

Quotes:

“You’re not going to make a delusion worse by listening to it and letting your loved one know that you’ve heard him and that you understand his anger, you understand his fear.” - Dr. Amador

My brother never believed he was mentally ill...but he stayed in treatment for the rest of his life” - Dr. Amador

Links:

Henry Amador Center on Anosognosia: https://hacenter.org/home

Book: I Am Not Sick! I Don’t Need Help: 20th Anniversary Edition: https://www.amazon.com/gp/product/0985206705/ref=dbs_a_def_rwt_hsch_vapi_taft_p1_i0

Who Are the 3 Moms?

Randye Kaye -Broadcaster, Actress, Voice Talent, Speaker, and Author (“Ben Behind his Voices”)

Miriam Feldman – Artist, Mom, Author “He Came in With It”

Mindy Greiling – member of the Minnesota House of Representatives for twenty years. Activist, Legislator, Author (“Fix What You Can“)

“Collaborative partnerships between law enforcement, mental health service providers, advocates, family members, and people with lived experience.” - Amy Watson

Sound good? That’s the foundation of the CIT Model.

“I could treat people like human beings” - Amy Watson

Police Activity is very much in the news these days, and response to mental health crises is often left in their hands.

Each of us has had experience with first responders, some trained in crisis intervention and some not. CIT Training is at least part of why our sons are alive (and not incarcerated) today.

Our guest today is Amy Watson, President of CIT (Crisis Intervention Team) International, a leader in promoting safe and humane responses to those experiencing a mental health crisis. She is also a professor at Helen Bader School of Social Welfare at University of Wisconsin-Milwaukee.

 CIT Basic Goals: 

• Improve Officer and Consumer Safety 
• Redirect Individuals with Mental Illness from the Judicial System to the Health Care System

We Talk About:

1. What is the CIT(Crisis Intervention Team)  program model? - and why do you personally do this work? -
2.  What does the research tell us about CIT?
3. What is CIT Training - what are the goals? Why the need?
4. What’s the cost? Who pays?
5. What’s the cost of NOT getting the training?
6. What do officers say who have had the training? Do they get pushback from other police officers?
7. How can a family member advocate for getting CIT training locally?

Links:

https://www.citinternational.org/

What is CIT?

https://vimeo.com/533695447

HBO Documentary “Ernie and Joe” - https://www.hbo.com/documentaries/ernie-and-joe

To end our first season with episode 25, we present the interview that started it all: Mimi and Randye interview Bob Kolker, and are joined by fellow activist/mom Laura Pogliano.

A conversation about #Schizophrenia and the Family: Is There Hope Beyond #HiddenValleyRoad? with Robert Kolker, Miriam Feldman, Randye Kaye, and Laura Pogliano. 
Kolker is a journalist and nonfiction author whose first book Lost Girls was a New York Times best-seller and was recently adapted for a Netflix film. This  book is Hidden Valley Road, an Oprah's Book Club selection and an instant #1 New YorkTimes best-seller about one family's struggle with mental illness.
Randye Kaye is author of Ben Behind His Voices, and creator of The Power of Kinship programs. She is also a noted voice talent, speaker and actor.
Miriam Feldman is an artist, writer, and the mother of an adult son with schizophrenia. Her book, "He Came in With It" chronicles her family's story and will be out on July 21st.
Laura Pogliano has been featured frequently in USA Today as mother & advocate for her late son Zaccaria. She is now the Maryland State Chapter Lead for SARDAA and focuses on family support and the reclassification of schizophrenia to Neurology. She is also on the Board of SARDAA.

What, if anything, has changed for families dealing with schizophrenia - and what has to happen next to improve the current situation?
We touch on:
Early Detection and Treatment
Need to fund and advance research and find a CURE
Four Pillars of Recovery
Stigma - is reducing stigma enough? (no!)
Schizophrenia as a brain condition, not a psychological issue
the sibling experience
Hidden Valley Road and the Galvin family
current disabled mental health system
need for education, NAMI Family-to-Family
...and more.

SHOW LESS

“Mom, the voices are telling me I need to kill you right now.” - 

What can a parent do after hearing that from a child? 

How can we educate mental health providers so they really “get” what it’s like to have a serious mental illness, or to be a family   member of  a loved one who has one?

Ever wonder what you can do to make the mental  system better for others, even if you can’t help your own family member as much as you wish you could?

This episode is about those steps, to help make changes and fix what is so broken about the system. 

Welcome Leslie Carpenter: Mom. and….

Experienced Serious Brain Disorders Advocate working to fix the broken treatment system locally, in Iowa and nationally. Effective speaker for advocacy. Recently retired early from a rewarding 34 year career in physical therapy and management, to have more time and energy to focus on improving the quality of treatment for 11.9 million people with serious brain disorders in our country.

Keep spreading the word. Also join our facebook page @schizophrenia3moms

• Leslie’s family story with schizoaffective disorder
• Political Advocacy in Iowa - Meeting with Presidential Candidates and more
• NAMI Provider Training - how it works, and expanding it nationally
• solutions to fixing the broken, siloed treatment system for people living with serious brain illnesses
• anti-stigma campaigns
• The dream of creating psychiatric assisted living campuses - long-term housing solutions
• “Ripples Of Hope” advocacy talks 

LINKS: 

Advocacy talk to the City of Iowa City via Zoom this past spring, after she and her husband received an award from the Iowa City Human Rights Commission:

   https://www.youtube.com/watch?v=b0aO1TbwED0

NAMI Provider Ed:

https://www.nami.org/Support-Education/Mental-Health-Education/NAMI-Provider

[email protected]

NAMI Iowa video on Provider Ed:

https://namiiowa.org/provider/

Pete Earley:

http://www.peteearley.com/

Crazy: A Father's Search Through America's Mental Health Madness

DJ Jaffe obituary:

https://www.nytimes.com/2020/09/16/nyregion/dj-jaffe-dead.html

His book, Insane Consequences

Fellowship Place: New Haven CT

https://fellowshipplace.org/

International Clubhouse

https://clubhouse-intl.org/resources/quality-standards/

Are you dealing with SZ in a loved one? Feeling confused? Scared? Angry? Overwhelmed?

You are not alone. We've been there...and how.

There are stages in the emotional journeys of families dealing with Schizophrenia in a loved one. Mimi, Mindy and Randye are now often at the "advocacy/Acceptance" stage - but not always.
In excerpts from our books, and quotes from listeners, we talk about the events and feelings in the earlier stages of the journey. 
From Crisis, to Coping, and Advocacy...and the carousel keeps spinning.
And yes there is hope too.
Who Are the 3 Moms?

Randye Kaye -Broadcaster, Actress, Voice Talent, Speaker, and Author (“Ben Behind his Voices”)

Miriam Feldman – Artist, Mom, Author “He Came in With It”

Mindy Greiling – member of the Minnesota House of Representatives for twenty years. Activist, Legislator, Author (“Fix What You Can“)

Episode 22- From Schizophrenia and Pot Addiction, through Treatment, to Success: Carson's Story

Today we  talk with  Carson S. , who has an inspiring story to tell, from schizophrenia/addiction to sobriety/recovery success.  We talk about his life….what it used to be like, what his challenges have been (addiction/intrusive thoughts/SMI) , and how he is doing now…..and what advice he might give to others who need to have hope.

Mimi and I met Carson last week at a gathering at Rob Laitman’s home for his patients and families (see episode 18)  

• What happened when you were using marijuana?
• Did you realize that was an abnormal response?
• As your symptoms progressed, what did you think was happening?  Did you even suspect mental illness?
• Did your parents or family know what was going on?  What about teachers or friends?  Did they suspect anything?
• When was it that you finally realized you had a problem?
• Did you ever “hear voices”? If you did, could you tell they weren’t real?
• What other symptoms did you recognize?
• Were you afraid of the medication? Afraid of the doctors?
• Since we know you finally ended up on clozapine, you must have had a rough journey on previous medications?  Tell us about that.
• How was clozapine different?
• When did you notice improvement?  Were there specific things that changed or were different?
• You spent a year at Viewpoint Dual Recovery Center - what was that like?
• Have you had any challenges with wanting to use marijuana?
• What’s your life like today?
• It is very difficult to recover from the dual diagnosis of BOTH addiction and serious mental illness. 
• But as of today you seem to be managing this.  How did you do it? 
• What do you want other families to know?

Who Are the 3 Moms?

Randye Kaye -Broadcaster, Actress, Voice Talent, Speaker, and Author (“Ben Behind his Voices”)

Miriam Feldman – Artist, Mom, Author “He Came in With It”

Mindy Greiling – member of the Minnesota House of Representatives for twenty years. Activist, Legislator, Author (“Fix What You Can“)

Today is about solutions -( we’ve done a lot of episodes about problems) - and at the end we’ll share some free resources to help you if someone in your family has schizophrenia - 

Guest: Michael Mackniak, JD
Free resources:
https://myfenow.com/3moms/ 

https://myfenow.com/tools-of-hope/

Other Links:

https://vip.myfenow.com/

https://michaelmackniak.com/

http://guardian-ct.org/

https://www.facebook.com/groups/FamilyEmpowermentNOW/

Mike’s book : Saving Melissa

Michael Mackniak specializes in coaching families and fiduciaries, to help them with the  ability to get the comprehensive services for their loved ones, friends or clients.

He wrote "Saving Melissa: The Seven 7C's for Curing the Mental Health System" . It has insight and strategies into the process of creating an interrelated service system in their community.  

 He also leads Guardian Ad Litem Services, better known as Melissa’s Project, which is a copyrighted program based on Care Coordination.

We Talk About:

What are the  7 c’s, and the obstacles you face when trying to implement them ?

(Core Concepts you have found to be most successful in providing effective and efficient services in mental health treatment?)     

1. Client Centered, 
2. Communicative, 
3. Collaborative, 
4. Consistent,   
5. Comprehensive, 
6. Committed, 
7. Coordinated

What are some of the common issues that you face when implementing your program

           People don’t want to be leaders

           HIPAA myths and misconceptions

           Reluctance to change (systemically)

           Institutional memory

           “Who do you think you are?”

Why is Family Empowerment so important? Are there Core concepts there, too? And challenges?  

Getting Tools of Hope -  and More Resources   

QUOTES:

“I really hate seeing broken systems...and there is nothing more inefficient than our mental health systems.” - Michael 

“I firmly believe the systems cannot change and will not work without the assistance of the families. Without family help the rate of success is vastly diminished.” - Michael

“The mental illness that you’re going through cannot define your family, and it cannot define you and who you are as a person.” - Michael 

 Who Are the 3 Moms?

Randye Kaye -Broadcaster, Actress, Voice Talent, Speaker, and Author (“Ben Behind his Voices”)

Miriam Feldman – Artist, Mom, Author “He Came in With It”

Mindy Greiling – member of the Minnesota House of Representatives for twenty years. Activist, Legislator, Author (“Fix What You Can