PLEASE JOIN THE CONVERSTAION ON MY FACEBOOK PAGE by Dede Ranahan

The following is an ongoing discussion on my personal Facebook page - Dede Moon Ranahan. If you’re on Facebook, please click on my page and join the conversation. Or enter your comments through the comment link below. Or send your comments to me in an email: dede@soonerthantomorrow.com

SMI (SERIOUS MENTAL ILLNESS) ADVOCATES AND SUPPORTERS

GOAL: This effort is short-term. To get SMI recommendations for a national SMI plan before the 2020 presidential candidates (Republican, Democrat, Independent). None of them are currently talking about SMI (not mental health, not drug addiction). SMI. The SMI community is looking for a candidate/s who will champion SMI and its concomitant issues. With adults and children impacted and their immediate families, we represent roughly 72 million people in the US.

THE ASK: That candidates talk about SMI in their campaign appearances and debates and post a national SMI plan on their campaign websites.

To encourage them, we'll be submitting a cover letter, one-page outlined/bulleted plan, references and resources to aid them in developing their plan, and if they will read that far, the full list of 18 topic areas.

RESULTS OF YOUR VOTES FOR THE TOP 5 ISSUES FOR A ONE-PAGE PLAN:
1) Reclassification of SMI as neurological brain disorders
2) IMD (Institutes for Mental Disease Exclusion)
3) HIPAA Reform (Health Insurance Portability and Accountability Act)
4) Continuum of Care
5) Decriminalization of SMI

NOW WE MUST REFINE THIS TOP 5 LIST.
PLEASE ANSWER 1 OR MORE OF THESE QUESTIONS IN A FEW SENTENCES:
1) Why is reclassification of SMI important?
2 )Why is IMD repeal important?
3) Why is HIPAA reform important?
4) Why is a Continuum of Care important?
5) Why is Decriminalization of SMI important?

1) Name one specific action a president can take to advance the reclassification of SMI.
2) Name one specific action a president can take to advance IMD repeal?
3) Name one specific action a president can take to advance HIPAA reform?
4) Name one specific action a president can take to advance a Continuum of Care?
5) Name one specific action a president can take to advance the Decriminalization of SMI.

Thanks, Dede

1. RECLASSIFICATION OF SMI
-Reclassify schizophrenia and related disorders as neurological conditions or neurobiological brain disorders. Eliminate “behavioral health” nomenclature.


2. HIPAA (Health Insurance Portability and Accountability Act)
-Reform current HIPAA laws.
-Present patient and family with a social worker to support the family unit throughout the care process including medication and psychiatric treatment.
-Require mandatory training for everyone in the medical profession about HIPAA and a required test on proven knowledge.
-Develop a federal program for the administration of a psychiatric advance directive (PAD) which includes a universal release of information and designates an agent if capacity is lost. Must include enforcement mechanisms to require mental health/illness facilities to follow the directives.

3. IMD (Medicaid’s Institutes for Mental Disease Exclusion)
-Repeal it.
-To prevent warehousing, use unscheduled check-ups on those receiving services.

4. A FULL CONTINUUM OF CARE
-Early intervention at all stages of illness.
-Provide Inpatient (IMD waivers), Outpatient (ACT, FACT, PACT, AOT, Clubhouses), Housing (full array from locked stabilization to unlocked intensive, medium intensive, peer-run PSH, Asylum).
-Require a psychiatric standard of care for various SMI diagnoses like other medical specialties. Diagnosis should be staged as cancer is.
-Provide more long-term care.
-Remove ER’s as entry for mental health hospitalization. The ER process and chaotic environment are not conducive to the well-being of SMI patients.
-Give federal assistance to states providing supportive housing.

5. DECRIMINALIZE SMI
-Eliminate solitary confinement in jails and prisons.
-Support nationwide civil mental health courts and expand criminal ones that are already established to keep SMI out of jails and prisons.
-Establish mental health courts on a federal level, and coordinate federal courts and state-run mental health facilities.
-Move crimes that SMI commit in the federal system into state courts.
-Provide a digitized system to connect county/hospital medical records to jails and prisons.
-Mandate a way for families to provide medical history to jail/prison doctors to inform treatment.
-Provide uniform psychiatric screening of the incarcerated and use standardized protocols for medication of SMI prisoners.
-Require strict limits on waiting for trial time.

SAMPLE SMI LETTER TO 2020 PRESIDENTIAL CANDIDATES by Dede Ranahan

5/9/19

Presidential Candidate (NAME)
Email or address

Dear 2020 Presidential Candidate (NAME):

I often hear discussions about mental health awareness, but I don’t hear discussions about serious mental illness (SMI). Many of us, in the SMI community, fear that most focus is given to mental health conditions where people are resilient, can recover, can go to work, and live independently. I appreciate the goal to give hope to these individuals. The story, however, is much broader.

With SMI (schizophrenia, schizo-affective disorder, bipolar disorder, clinical depression, OCD) some people do not recover, and cannot work or live independently. Some are so sick they don’t realize they’re sick (anosognosia), don’t respond to treatment (if they get it), and end up incarcerated, homeless, missing, suicidal or dead. The SMI population represents 4-5% (10 million) of the mentally ill in the United States. And ten times as many people with SMI are incarcerated as are hospitalized. For whatever reasons, these individuals don’t get the attention they deserve and consistently fall to the bottom of the proverbial heap.

My son, Patrick, was one of these individuals.

If it “takes a village to raise a child,” it takes a country to help a “child” with SMI — parity in mental health care, IMD (Institutes of Mental Disease) Exclusion repeal (beds) , HIPAA (Health Insurance Portability and Accountability Act) reform, housing, hospitalization instead of incarceration, brain disease research, supported education, and on and on.

So far, our country is not stepping up. A serious mental illness system does not exist.

The presidential candidate I’ll vote for will have the courage and insight to raise SMI issues and to create a plan/policy to deal with them on a national scale. What is your plan/policy for SMI? I would like to read about it on your website.

Thank you for your prioritization of SMI issues.

Sincerely,
Dede Ranahan

www.soonerthantomorrow.com
A Safe Place to Talk About Mental Illness in Our Families
dede@soonerthantomorrow.com
Author - Sooner Than Tomorrow — A Mother’s Diary About Mental Illness, Family, and Everyday Life
(Available online at Amazon and Barnes & Noble)

ADDRESSES: See yesterday’s post for addresses/email for 2020 presidential candidates.

A POEM FROM SALINAS VALLEY STATE PRISON by Jorge Fajardo, Jr.

Dear Ms. Dede Ranahan,

I would like to express my appreciation for you response to my letter. Also the card. It really reached me at a good time. Thank you. I'm sorry you lost your son. I couldn't begin to understand how you feel. I'm sorry. The blog is a very good thing.

I'm at the mental hospital now and a lot of way out things happen here and it's like no one cares for anyone here and a lot of people here don't even belong in prison because they're so far gone. It's sad they even got convicted when you can clearly see they weren't ever stable.

I find myself trying to help them and get yelled at by the cops to mind my own business like they thrive on their suffering. It's disgusting. My toilet was broken for two weeks with piles of feces in it. I asked if I could eat my lunch in the dayroom cause the smells made me nauseous and they said, "No, I got to eat in my cell."

I felt dehumanized like I was some kind of animal. Prison disgusts me. I'm tired of it. Receiving mail is my way out. So I appreciate that. I would never ask for anything else. Mail is a blessing.

Much respect,
Jorge

Lonely ways, depressing days,
How much time will I have to pay?
Pain in my chest, it gives no rest.
On lonely days.

Click, click, clack the door goes smack.
When the day begins.
Click, click, clack the door goes back,
When the day ends.

Over and over as the days go on.
When will this time end?
Only time can tell...

Till then, depressing days
Cause my lonely ways.

By Jorge Fajardo, Jr.

Read more correspondence from Jorge on this blog: April 25, 2018. Click on it in the Archives on the right side of the page.

Jorge has no family. You can write to him at this address:
Jorge Fajardo
#AN9115
Salinas Valley State Prison
(PIP) C-5-131-L
P.O. Box 1050
Soledad, CA 93960

Salinas Valley State Prison

Salinas Valley State Prison

A LETTER FROM CALIFORNIA STATE PRISON by Travis Christian

Dede,

I haven't been reading your book lately. I borrowed some books from someone at my church so I've been concentrating on finishing them. I want to do the exercises in your book. I cherish your book. I read it slow. I'm going to start reading it again. So now that you think I never read the book you got me jlk :-)

I still haven't heard if your visitor's app has been cleared. I'm looking forward to your visit.

The Carr fire has affected the air quality a little bit here, not too bad. We have been praying for the firefighters and families affected.

I'm getting along good with my new cellie. I play less guitar. We get tired of each other sometimes. But overall, I feel blessed to have my cellie. I like him a lot. We're building a friendship. He's like family. 

I still battle my mental illness. I've had some obtrusive thoughts that plagued me and made me fearful but I recognized they were just thoughts. I talk to my clinician about them.

Thank you for the birthday card. We don't get anything for birthdays. I'll probably work out and make something to eat. Thanks for the virtual cupcake :-)

Well, I'm glad you got to visit your daughters. I love Tahoe. I used to drive there to grocery shop sometimes when I lived in Mono County. I went to Carlsbad with my family one time. It's a nice area. What is the Retreat Center like in Encinitas? I mean what is a retreat center? Do you do something every year for the anniversary of Pat's passing?

I think of my dad all the time. I'm sorry for your loss. When I think about my dad, I smile. His memory is so fond to me, it's like a treasure I'll always keep. I can't wait to talk about Pat and him.

That's good your back to working on your blog. I know you helped my mom and myself. You helped my mom a lot. Thank you for doing what you do. I pray you continue to be a blessing to many more moms, dads, inmates, and mentally ill people. I pray God gives you the endurance to get your book published, the perseverance to see your dream come true, and the patience that produces character, and character that produces hope.

I am in contact with Jorge. My mom has been sending him cards and drawing material. He wrote me a poem so I wrote one back to him. He's my buddy. I write to him.

I'm sending good thoughts to you now. I look forward to meeting you. I'm going to seal this letter with love.

Love, Travis

See more correspondence with Travis on this blog: Feb 3, Feb 10, Feb 27, March 14, April 18, May 16, June 6, 2018. Click on the stories in the Archive on the right.

Travis's Mailing Address:
Travis Christian
BB8099
B1-2-11
California State Prison - Sacramento
P.O. Box 290066
Represa, CA 95671

California State Prison   

California State Prison

 

LETTER TO HHS INTERDEPARTMENTAL SERIOUS MENTAL ILLNESS COORDINATING COMMITTEE - Jeanne Gore, Teresa Pasquini, Dede Ranahan and 36 Co-signers

This letter was presented at the committee's opening meeting (8/31/2017).

Dear Members of the US DEPARTMENT OF HEALTH AND HUMAN SERVICES INTERDEPARTMENTAL SERIOUS MENTAL ILLNESS COORDINATING COMMITTEE:

We, family members of the 4% who have a serious mental illness, would respectfully like the opportunity to supply you with a rebuttal to Elyn Saks' article, “CONSENT DILEMMA: It’s hard to keep mental-health patients on their medications. Would it help to let them say 'no?'" published in Politico on August 9, 2017.

We’d also like to respectfully remind you the reason the US Department of Health and Human Services Interdepartmental Serious Mental Illness Coordinating Committee exists is that we, the family members of the 4%, along with Representative Timothy Murphy, Representative Eddie Bernice Johnson and her 206 fellow cosponsors of the “Helping Families in Mental Health Crisis Act,” decided to speak out and get real about serious mental illness and the horrific suffering, death, and criminalization of our loved ones.

Please read the gut-wrenching comments (attached) sent in to Teresa Pasquini’s “Shattering Silence” campaign (https://www.change.org/p/mary-gilberti-and-nami-board-of-directors-join-families-advocates-of-the-4-in-shattering-silence-about-serious-mental-illness). You’ll see that many of our loved ones are homeless, jailed, tortured in solitary confinement, committing suicide, and being brought out of prison in body bags. 

Approximately 50% of individuals with schizophrenia, and 40% with bipolar disorder have symptoms of anosognosia, or a lack of insight into their illness. Anosognosia is the single largest reason why people with schizophrenia and bipolar disorder refuse medication or do not seek treatment at all. 

We acknowledge that, with treatment, some people are able to regain insight into their illness and accept treatment. However, as many as 50% of those with schizophrenia and bipolar disorder never do. 

One example of the 50% who don’t ever regain insight is Jeanne Gore’s son. He has schizoaffective disorder and has been hospitalized 43 times over the past 13 years. All but one of those hospitalizations was involuntary because he has no awareness of his illness. He’s been jailed twice, homeless, missing, and beaten up by police and members of the community. When Jeanne got AOT legislation passed in Maine, she was finally able to see her son living successfully in the community. He’s an artist and a musician with a brilliant mind and a generous heart who is now in his own apartment living a good life. As long as he has a court order for treatment, he’ll continue to take medication, all the while insisting that he does not have a mental illness. 

Joy Torres, who suffers from schizophrenia, is a consumer and a family member with children who also have schizophrenia. She says,”Being forced to take my medication saves me and all around me. Not being forced would be life threatening.”

Let’s look at the facts:

Prevalence and Treatment Rates*

  • 8.1 million adults with schizophrenia or bipolar disorder mental illness (3.3% of the population)+
          5.4 million — approximate number with severe bipolar disorder (2.2% of the population), 51% untreated+
          2.7 million — approximate number with schizophrenia (1.1% of the population), 40% untreated+
  • 3.9 million — approximate number untreated in any given year (1.6% of the population)+

Consequences of Non-treatment* 

  • 169,000 homeless people with serious mental illness**
  • 383,000 inmates with mental illness in jails and prisons
  • 50% — estimated percentage of individuals with schizophrenia or bipolar who attempt suicide during their lifetimes
  • 10% — estimated percentage of homicides involving an offender with serious mental illness
    (approximately 1,425 per year at 2014 homicide rates)
  • 29% — estimated percentage of family homicides associated with serious mental illness
  • 50% — estimated percentage of mass killings associated with serious mental illness

* Numbers and percentages of US adults
+National Institute of Mental Health, 2016
**2015 Annual Homeless Assessment Report

Would you deny treatment to someone who suffered a stroke, was having a heart attack, had Alzheimer’s disease or was otherwise incapacitated?  No. We argue that not treating those who are too sick to consent to treatment carries the potential of much greater harm than giving involuntary or, better yet, nonvoluntary treatment. 

Dominic Sisti, PhD, an assistant professor of Medical Ethics & Health Policy at the Perelman School of Medicine at the University of Pennsylvania, recently proposed a new category for psychiatric patients to justify instances of compulsory treatment.

"The current strict limitations on involuntary treatment risk allowing people with psychiatric illness to go untreated and experience worsening symptoms despite compelling evidence that they would want to be well," said Sisti. "A patient may have previously expressed a wish to be treated while in crisis—in which case, a treatment framed as involuntary is actually something else. The proposed concept of nonvoluntary treatment provides a more precise categorization of such cases."

Patients covered by this concept would include those who have expressly indicated a desire to be treated when needed, those who have been living successfully in recovery from mental illness and clearly wish to continue doing so, and those who have difficulty escaping severe drug addiction despite an evident wish to become addiction-free.

The "nonvoluntary" category could also cover patients presenting with their first psychotic episode—due to undiagnosed schizophrenia or bipolar disorder, for example—who essentially have no idea what is happening to them.

The evidence to justify nonvoluntary treatment could include advance directives already provided by the patient to caregivers, as well as testimony from family members, case managers, and primary caregivers — and even the patient's own social media posts.

The nonvoluntary treatment concept would still involve a degree of ethical risk, as the evidence of a patient's authentic wishes might be ambiguous. “But,” Sisti said, “this challenge is not much different from those found in other areas of medicine where a patient seems incapacitated and caregivers and family members must use their own judgment concerning patient care. Moreover, there is potentially much greater harm in not treating these very sick patients compared to providing nonvoluntary treatment.”

In conclusion, we’re promulgating making it easier, rather than harder, to access appropriate treatment and care.  Please reply and continue this discussion with us. We’d appreciate hearing your thoughts about 1) Treating those who are too sick to consent to treatment; 2) A nonvoluntary treatment concept.

Thank you for your service.

 Respectfully Submitted,

Jeanne Gore, advocate, mother of someone with a serious mental illness, President, Families for Treatment of Serious Mental Illness, “We Are Their Voices”  https://www.youtube.com/watch?v=Khbkifi47Ig http://www.treatsmi.org

Teresa Pasquini, Recovering Angry Mom & Co-Founder Mental Illness FACTS, Family and Consumer True Stories

Dede Ranahan, soonerthantomorrow.com A Safe Place to Talk About Mental Illness in Our Families

 Co-signers:

 Joy Torres, mother and someone with a severe MENTAL illness not a simple mental health issue, Chair of Membership, Families for Treatment of Serious Mental Illness

 Mary Murphy, a mother in Springfield Oregon

 Candy DeWitt, Voices of Mothers and Others

 Martie Rhoden Bessler, Mother and Advocate for son and others with SM

 Ray and Connie Maternick, parents of a son who struggles with SMI

 Laura Pogliano, Director, Parents For Care, Baltimore, MD

 Kathy Day, MPA, family member of 25 year old with treatment-resistant paranoid schizophrenia

Cheri VanSant, mother to adult son with bipolar disorder with psychosis in mania/anosognosia. Only after involuntary treatment was my child stable long enough to stay out of a hospital for the last two years. It took 18 years with a lot of lost cognition to make that happen. 18 lost years.

Ruth Medina, M.S. Rehabilitation Counseling, sibling of person with mental illness

Anne Francisco, bereaved mother of son who deserved treatment but got incarceration and  death

Wendy Brown, mother of a son with bipolar with psychosis and OCD

Sandra Turner, Mother of 23 year old Son who desperately sought treatment in Plattsburgh NY, was Sent Away, and dove headfirst into a freight train less than two hours later

 Diann King, a family member of a loved one with a brain disease

 Marcie Sohara, mother to a beloved son with a brain disease

 Lisa Powell, a family member of a loved one with SMI

 Dan West, Father of a son with a brain disorder

 Kimberlee West, Mother of a son with a brain disorder. Also Sister of a smi brother who committed suicide

 Laurie S. Turley, family member of a loved one with serious mental illness

 Kenneth O. Turley, family member of a loved one with serious mental illness

 Roseann Pruett, Mother of twins and widow of SMI

 Angie Geyser, mother and advocate for child with SMI

 Alison Monroe, mother of a dual-diagnosis person with schizophrenia

 Nina McDaniel, mother and advocate for Son with Schizophrenia from Oley, PA

 Janet Hays, President – Healing Minds NOLA

Amanda Woodward, PMHRN-BC, advocate for the seriously mentally ill

 Sabrina Barton, mother of a child with SMI

 Gloria Hill ,Florida Guardian Advocate, have son with serious psych brain disease

 Anthony and Cynthia Hernandez, TTT.transformingtreatabletragedies.org

 Lynn Nanos, LICSW, Mobile Psychiatric Emergency Clinician

 Sylvia Mascareno Charters, MOMI of Florida, son with bipolar with psychosis

 Susan Inman, family caregiver

 Helen Rees, RN, psychiatric nurse and advocate for the seriously mentally ill

 Heather McKenzie, Mother, Mental illness advocate

 Ruth Johnston, mother of incarcerated schizophrenic son