LETTER TO SENATOR WYDEN AND THE SENATE COMMITTEE ON FINANCE by Dede Ranahan

November 1, 2021

Dear Senator Ron Wyden, and other members of the Committee on Finance:

This is in response to your request for input from stakeholders to help you better understand how Congress can address behavioral health care challenges.

First, thank you, Senator Wyden, for keeping at it. I’m sure you don’t remember, but back in the late 1990s you intervened for my son who was delusional and psychotic in Oregon. He died in a California hospital psych ward in 2014. He never did receive the help he needed for schizo-affective disorder. In the interim, I became a mother bear and mental illness activist. I’ve written two award-winning books, Sooner Than Tomorrow — A Mother’s Diary About Mental Illness, Family, and Everyday Life (Nautilus Book Awards Gold Medal Winner, Memoir, 2019) and Tomorrow Was Yesterday, Explosive First-Person Indictments of the US Mental Health System — Mothers Across the Nation Tell It Like It Is (Nautilus Book Awards Silver Medal Winner, Social Change, Social Justice 2020). The second book includes stories from 65 mothers from 28 states, and a fifteen-point plan to address serious mental illness (SMI - schizophrenia, schizo-affective disorder, bipolar disorder, clinical depression, etc.). The plan was developed in 2019 by advocates/activists from across the country.

In January 2021, 150 Tomorrow Was Yesterday readers, from every state in the nation, volunteered to send a copy of the book to the White House (Joe Biden, Jill Biden, Kamala Harris, Xavier Becerra, and individual legislators) thinking 150 copies of the same book from every state might get someone’s attention. Five months later, we all began receiving form letters from the White House thanking us for our “gifts” and for welcoming Joe Biden to the Presidency. No mention of the topic. No reference to the books. It was hurtful and insulting.

The 15-part plan was prioritized by the participants. The number 1 priority on their list is to "Reclassify Serious Mental Illness (SMI) from a Behavioral Condition to what it is, a Neurological Medical Condition." Until we look at SMI through a biological/physical lens, the significant changes we users of the system need will not happen.

I’m not trying to specifically address the questions you’ve posed in your letter. The SMI Plan cuts through all of them. More significantly, it raises issues not included in your list. The suffering in the SMI community (11-13 million diagnosed individuals plus their families) is intense. We’re screaming to the heavens for help. So far, no one seems to be listening.

Summary from Tomorrow Was Yesterday:
“As it stands today, the US mental health/illness system is filled with political landmines and gut-wrenching divisions: parents vs. children, peer organizations vs. family organizations, voluntary vs. involuntary treatment concepts, psychiatrist vs. psychologist turf wars, state vs. federal jurisdictions, HIPAA restrictions vs. parental rights, lack of beds vs. incarceration, unions vs. providers, psychiatry vs. anti-psychiatry, civil rights vs. dying with your rights on, NIMBYism vs. housing, traditional medicine vs. holistic medicine, and funded advocacy organization vs. unfunded grassroots advocacy efforts. I watched my son Pat die because the system is tied up in bureaucratic and philosophical knots.”

I would be happy to send you a copy of Tomorrow Was Yesterday which includes the 15-point plan to address SMI. My hope is that you, and others on the committee, might read our stories, take the plan seriously, and pursue some of its recommendations. It’s a beginning. It’s from the people in the trenches -- the sufferers, the families, the folks the system is supposed to help.

Thank you for reaching out. Let me know if/where I should send a copy of Tomorrow Was Yesterday.

Sincerely,
Dede Ranahan

Available on Amazon

MENTAL HEALTH ADVOCATES PUSH REFORMS by Gary Warth

San Diego Union Tribune 8/7/19

Coalition seeks support for new laws and policies from presidential candidates

By Gary Warth

POWAY

A grassroots coalition of nationwide and local mental health advocates is asking all presidential candidates to support reforms in laws and policies that they say will make it easier for people to get treatment and for families to help their troubled loved one.

“The first thing you need to do is educate the candidates, because most people don’t understand serious mental illness,” said Poway resident Linda Mimms, a National Alliance on Mental Illness-trained advocate who helped craft a five-point platform that is being presented to candidates.

Mimms has called for reforms to mental illness laws for the past several years, arguing that parents of adults with mental problems should have more rights and courts should have more flexibility to mandate treatment.

Among the proposals in the platform are a call to create a cabinet position exclusively focused on serious mental illness and changes to laws that would ensure mental health professionals are permitted to share and receive diagnostic information with and from parents or caregivers.

Laws about mental illnesses became part of a national discussion this past week after mass shootings in Texas and Ohio. Mimms said she was encouraged when President Trump called for reforming mental health laws to better identify and even involuntarily confine people who may commit violent acts while also ensuring more patients receive early treatment.

She cringed, however, when he referred to “mentally ill monsters,” and noted that a small percent of mass shooters had been diagnosed with mental problems.

There are connections, however. A Wall Street Journal editorial this week cited studies between 2000 and 2015 that suggest a third of mass killers had untreated severe mental illness, while an FBI study found 40 percent had received a psychiatric diagnosis, and 70 percent had other mental health issues.

The platform was drafted after a monthlong online discussion among about 70 people who were not associated with any one group and were from 30 states. Mimms, who has a degree in public policy, wrote the final version that was adopted by organizer Dede Ranahan, author of “Sooner Than Tomorrow — A Mother’s Diary About Mental Illness, Family, and Everyday Life.”

Other local advocates who worked on the platform were Katherine Smith-Brooks and Bob Brooks of Carlsbad and Mary Sheldon of Poway.

The platform’s first topic calls for reclassifying serious mental illness from a behavioral condition to a neurological medical condition, which will unlock more research funding and help in insurance reimbursement, according to the advocates. It also calls for a cabinet position on serious mental illness and the inclusion of schizophrenia in a Centers for Disease Control program that collects data on risk factors of neurological conditions.

The second topic calls for reforming the Health Insurance Portability and Accountability Act, or HIPAA, which the platform writers said creates barriers that shut out parents and caregivers from the treatment of family members.

The third calls for the repeal of a rule that prohibits Medicaid payments to facilities with more than 16 hospital psychiatric beds for people ages 21-65, which the advocates argue has created a national shortage of treatment options.

The fourth platform topic calls for long-term care of people with severe mental illness, including early detection and follow-up treatments after release. The platform calls for federal incentives to states that address a full array of services and supportive housing care.

The final topic is about decriminalizing serious mental illness and includes reforms that can lead to more involuntary treatment, which Mimms said was her personal top priority.

“Serious mental illness is the only disease where the doors to treatment are shut unless a crime is committed,” the platforms reads. Specifically, it calls for redefining criteria for involuntary commitment with terms that are objective and based on scientific, medical needs.

A letter that will be sent to all candidates asks each to address the topics in their campaign appearances and debates, Mimms said. 

gary.warth@sduniontribune.com

Click here to read the article in the San Diego Union Tribune 8/7/19 about our 5 part plan for SMI.

NOTE FROM DEDE: If it takes a village to raise a child, it takes a country to help a child with SMI. This coalition is from across our country. Let's keep the momentum going. As Linda has done, contact your local media outlets and send them our plan. Unfortunately, our effort is manifesting in a time of wrenching, national grief. Fortunately, our plan is ready to go. If you'd like a copy of the plan, the cover letter, and an addendum of additional ideas, post your email address in the comments section below, or send it to me at dede@soonerthantomorrow.com. Then forward the documents to people in your sphere of influence. Thanks to everyone participating.

http://www.bit.ly/soonerthantomorrow

Yamileth Lopez holds a photo of her deceased friend Javier Amir Rodriguez at a makeshift memorial for victims in El Paso, Texas. (Mario Tama Getty Images)

Yamileth Lopez holds a photo of her deceased friend Javier Amir Rodriguez at a makeshift memorial for victims in El Paso, Texas. (Mario Tama Getty Images)

PLEASE SHARE WITH THOSE IN YOUR SPHERE OF INFLUENCE by Dede Ranahan

I believe that serious mental illness (SMI) should not be a footnote to other issues, i.e., gun violence, and that it needs to be recognized and addressed as its own issue. I'm reposting the 5 part plan developed by grassroots advocates from across the country. It's not comprehensive but it's a beginning.

Before SMI becomes the victim — responsible for gun violence — and before politicians use it more and more as a scapegoat, please join us. Send copies of this plan to local, state and federal representatives. They need to be educated. They need to step up and help 10 million SMI individuals and families who fight every day for life and death services.

Post your email in the comments section below, or send it to me at dede@soonerthantomorrow.com. I'll send you the cover letter, plan, and additional ideas so you can forward them to those within your sphere of influence.

A FIVE-PART PLAN TO ADDRESS SERIOUS MENTAL ILLNESS (SMI)

FOR ALL 2020 PRESIDENTIAL CANDIDATES

PLEASE ADDRESS THESE TOPICS IN YOUR CAMPAIGN APPEARANCES AND DEBATES

1. RECLASSIFY SERIOUS MENTAL ILLNESS (SMI)) FROM A BEHAVIORAL CONDITION TO WHAT IT IS, A NEUROLOGICAL MEDICAL CONDITION WHY RECLASSIFICATION IS IMPORTANT
Reclassification will unlock more research funding and help eliminate discrimination in treatment, insurance
reimbursement, and the perception of SMI as “behavioral” condition. SMI is a human rights issue. NIMH ranks
SMI among the top 15 causes of disability worldwide with an average lifespan reduction of 28 years.
PRESIDENTIAL ACTION
* Create a cabinet position exclusively focused on SMI.
* Push for Congressional appropriations to include schizophrenia in a CDC program that collects data on the
prevalence and risk factors of neurological conditions in the US population.

2. REFORM THE HEALTH INSURANCE PORTABILITY AND ACCOUNTABILITY ACT (HIPAA)
WHY HIPAA REFORM IS IMPORTANT
Overly strict HIPAA laws make it extremely difficult for families and caregivers to partner in the treatment of their loved ones, resulting in important life-saving medical information gaps. By eliminating this barrier, family support will be strengthened, reducing the chance of relapse, homelessness, imprisonment, and death.
PRESIDENTIAL ACTION
* Work with legislators to change HIPAA law to ensure mental health professionals are legally permitted to share and receive critical diagnostic criteria and treatment information with/from parents or caregivers of SMI.

3. REPEAL MEDICAID’S INSTITUTES FOR MENTAL DISEASE EXCLUSION (IMD)
WHY IMD REPEAL IS IMPORTANT
IMD repeal will increase the availability of psychiatric inpatient beds. The IMD exclusion is not only discriminatory of those suffering from neurological brain disorders, it is also a leading cause of our national psychiatric hospital bed shortage. It prohibits Medicaid payments to states for those receiving psychiatric care in a facility with more than 16 beds who are 21-65, the age group with the most SMI.
PRESIDENTIAL ACTION
* Work with legislators to repeal the IMD exclusion.

4. PROVIDE A FULL CONTINUUM OF CARE
WHY A FULL CONTINUUM OF CARE IS IMPORTANT
A continuum of care ensures that SMI patients receive early intervention at all stages of their illnesses, longterm care when needed, and follow-up treatment (medications and therapies) when they’re released. It reduces visits to jails, ER’s and hospitals, homelessness, and morgues. A continuum of care provides life-time management.
PRESIDENTIAL ACTION
* Create federal incentives to states which are addressing a full array of inpatient, outpatient, and supportive
housing care.

5. DECRIMINALIZE SERIOUS MENTAL ILLNESS (SMI)
WHY DECRIMINALIZATION OF SMI IS IMPORTANT
People suffering from other neurological conditions like Alzheimer’s and dementia can get treatment promptly without being kicked out of their homes to wander the streets until they are arrested and put in jail or prison rather than a hospital. Serious mental illness is the only disease where the doors to treatment are shut unless a crime is committed. This is pure and simple discrimination with the disastrous results we see in our country today — homelessness, incarceration, the disintegration of families, and death.
PRESIDENTIAL ACTION
* Work with legislators to change “must be a danger to self or others” criteria.
* Work with legislators to change involuntary commitment criteria, alleviating the subjective nature of “gravely
disabled” and redefining it in objective terms based on scientific medical need for treatment. Psychosis, like a stroke, is a traumatic brain injury and needs immediate treatment for the best outcome.

PLEASE HELP US REACH 2020 PRESIDENTIAL CANDIDATES by Dede Ranahan

Sooner Than Tomorrow Readers,

I’ve been working hard the last couple of weeks, with advocates from across the country, in the development of this Five-Part Plan. Individuals, professionals, writers, journalists, and mothers (always the mothers) have been brainstorming and refining this document. Our intent is to get it in front of every 2020 presidential candidate — Republican, Democrat, Independent. Our goal is to encourage them to talk about serious mental illness (SMI) on the campaign trail and in their debates, and to include a SMI plan on their websites. Right now, no candidate is talking about SMI. It’s as if it didn’t exist.

These are baby steps. We can’t address everything that needs to be addressed in our messed up mental illness system, but we have to start somewhere. We’re trying to help the candidates along. If they don’t have SMI on their radar before the election, they probably won’t have it on their radar once elected.

If you agree with the positions in this plan, and would like to send it to politicians of your choice, send me an email and I’ll email the documents (cover letter, plan, an attachment) back to you dede@soonerthantomorrow.com). The more individual voters the candidates hear from the better.

I, and many others, would really appreciate your support. Dede

A FIVE-PART PLAN TO ADDRESS SERIOUS MENTAL ILLNESS (SMI)
FOR ALL 2020 PRESIDENTIAL CANDIDATES

PLEASE ADDRESS THESE TOPICS IN YOUR CAMPAIGN APPEARANCES AND DEBATES

1. RECLASSIFY SERIOUS MENTAL ILLNESS (SMI)) FROM A BEHAVIORAL CONDITION TO WHAT IT IS,  A NEUROLOGICAL MEDICAL CONDITION

WHY RECLASSIFICATION IS IMPORTANT

Reclassification will unlock more research funding and help eliminate discrimination in treatment, insurance reimbursement, and the perception of SMI as “behavioral” condition. SMI is a human rights issue. NIMH ranks SMI among the top 15 causes of disability worldwide with an average lifespan reduction of 28 years.

PRESIDENTIAL ACTION

* Create a cabinet position exclusively focused on SMI.

* Push for Congressional appropriations to include schizophrenia in a CDC program that collects data on the prevalence and risk factors of neurological conditions in the US population.

2. REFORM THE HEALTH INSURANCE PORTABILITY AND ACCOUNTABILITY ACT (HIPPA)

WHY HIPAA REFORM IS IMPORTANT

Overly strict HIPAA laws make it extremely difficult for families and caregivers to partner in the treatment of their loved ones, resulting in important life-saving medical information gaps. By eliminating this barrier, family support will be strengthened, reducing the chance of relapse, homelessness, imprisonment, and death.

PRESIDENTIAL ACTION

* Work with legislators to change HIPAA law to ensure mental health professionals are legally permitted to share and receive critical diagnostic criteria and treatment information with/from parents or caregivers of SMI.

3. REPEAL MEDICAID’S INSTITUTES FOR MENTAL DISEASE EXCLUSION (IMD)

WHY IMD REPEAL IS IMPORTANT

IMD repeal will increase the availability of psychiatric inpatient beds. The IMD exclusion is not only discriminatory of those suffering from neurological brain disorders, it is a leading cause of our national psychiatric hospital bed shortage. It prohibits Medicaid payments to states for those receiving psychiatric care in a facility with more than 16 beds who are 21-65, the age group with the most SMI.

PRESIDENTIAL ACTION

* Work with legislators to repeal the IMD exclusion.

4. PROVIDE A FULL CONTINUUM OF CARE

WHY A FULL CONTINUUM OF CARE IS IMPORTANT

A continuum of care insures that SMI patients receive early intervention at all stages of their illnesses, long-term care when needed, and follow-up treatment (medications and therapies) when they’re released. It reduces visits to jails, ER’s and hospitals, homelessness, and morgues. A continuum of care provides life-time management.

PRESIDENTIAL ACTION

* Create federal incentives to states which are addressing a full array of inpatient, outpatient, and supportive housing care. 

5. DECRIMINALIZE SERIOUS MENTAL ILLNESS (SMI)

WHY DECRIMINALIZATION OF SMI IS IMPORTANT

People suffering with other neurological conditions like Alzheimer’s and dementia can get treatment promptly without being kicked out of their homes to wander the streets until they are arrested and put in jail or prison rather than a hospital. Serious mental illness is the only disease where the doors to treatment are shut unless a crime is committed. This is pure and simple discrimination with the disastrous results we see in our country today — homelessness, incarceration, the disintegration of families, and death.

PRESIDENTIAL ACTION

* Work with legislators to change “must be a danger to self or others” criteria.

* Work with legislators to change involuntary commitment criteria, alleviating the subjective nature of “gravely disabled” and redefining it in objective terms based on scientific medical need for treatment. Psychosis, like a stroke, is a traumatic brain injury and needs immediate treatment for the best outcome.


Me and The Jazz

Me and The Jazz

PLEASE JOIN THE CONVERSATION 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.