PLEASE HELP US REACH THE 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 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.

REWIND AND ERASE by Linda Rippee (PART ONE)

Today, I went and found my brother, Mark. He was lying on the sidewalk at a busy entrance to a shopping center. Cars were whizzing by. Another man was sitting there with him and, as I approached them, I could see that Mark was giving him money and asking him to count it. I was immediately suspicious. I asked my daughter to remain in the car.

I walked up quickly and called Mark’s name as I always holler his name before approaching him so not to startle him. I waited until he recognized my voice before I began conversation. Mark pulled another dollar bill from his pocket and asked me what denomination it was. I was concerned that maybe he was buying street drugs. No, that wasn’t it. Here sat another homeless person who had talked my blind brother into giving him all his money to buy a gold pocket watch. He laid out $14.00 which was all that he had. Unless that watch could verbally tell time, what on earth would a blind, gravely disabled man need with a pocket watch?

Good thing I had brought him food, water, and clothing. Mark was shirtless, but had a very heavy coat on. Today, the temperature is supposed to reach 98 degrees. I begged him to take off the coat. He refused saying the coat would be stolen. He was extremely sunburned already. The wounds on his face and around his empty eye sockets were still badly infected from two different beatings several weeks ago when he was robbed. Today, all he had with him was a small blanket. His clothing was disintegrating as he wore the same pair of pants all through the winter and spring. He didn’t have a cane to guide him. He has had 11 different canes this past year.  

I sat down next to Mark and, within seconds, it was obvious that he was delusional. He grabbed my hands and slapped them down, hard, on his leg that has a metal rod from crotch to ankle. He held both my hands down with his hands. His hands looked like leather and were cracked and bleeding. Regardless, he continued to hold my hands tightly. His entire body was trembling. He said, “We have to go back and erase each year that has passed since June 21, 1987 (the date of his motorcycle accident). Rewind and erase.”

I was shocked that he still knew that date. Yes, it was Father’s Day, but he still remembered the actual date. He proceeded to say each year backwards to 1987. With each year, he said, “Rewind & Erase!” He shook, violently, until he reached 1987. Then he grabbed and hugged me and said,” Now, don’t you feel better?”

I told him, “Yes, and I hope you do too.” He began to argue with the voices in his head, screaming that the police were implanting and growing people inside of people and controlling them. I tried to calm him and get him to eat the food I had brought him. He would take a bite, chew tiny bites, and then spit it out.

He brought up my twin. Mark doesn’t always comprehend what I tell him, but I continue to tell him the truth. CJ, my twin sister, had gotten bad news about a medical diagnosis. I shared her condition with him. He began yelling at the voices he hears and blaming those voices for all the pain and suffering of those he loves. The intent of his body language was to beat himself up. I hugged him, and once again reminded him that I love him — as I do on every visit. He didn’t want to let go and held on tight for a while. As I was saying goodby, he began crying. He said, “Someone disconnected me from my mother. They’re cutting out pieces of me.”

I slowly walked away, feeling sick to my stomach. If only I could “rewind and erase” all the horrible memories, delusions, pain, and suffering he’s had for the last three decades. Yes, Mark, I would feel better.

Linda adds: Every letter/email I’ve sent out has also been sent to the County Board of Supervisors. I’ve sent out over 1200 emails and my twin, CJ, has sent as many. Each time, we copy agencies and politicians. We’ve saturated them. We’ve sent out thousands of private messages all over the state, and made thousands of posts and comments in over 100 social media groups all over California. CJ authored the petition for AB1971* and we collected 56,000 signatures that went to the full assembly and senate. I’ve made 30 speeches speaking at public meetings. I’ve testified twice at the capitol in support of AB1971.* I’ve gone to the capitol and told my brother's story to support several other bills. There have been 12 news articles and TV interviews. Mark’s story has been published in three national blogs and used at medical conferences. We’ve friended, and are in contact with, several well-known national mental health advocates — Ron Powers, Teresa Pasquini, Leslie Carpenter, Dede Moon Ranahan, and DJ Jaffe to name a few. The Board of Supervisors are ground zero. They are aware of all that we’ve done. They stay silent and do not converse with our family. The next project we are working on is a documentary. I have many, many videos of my visits on the streets with Mark. We will make the videos available to politicians and to the public. They are undeniable. When they are shown, Solano County should hang its head in shame.

Note: Solano County has declared Mark to be competent.

*AB1971. This bill would, until January 1, 2024, expand the definition of “gravely disabled” for these purposes, as implemented in the County of Los Angeles, to also include a condition in which a person, as a result of a mental health disorder, is unable to provide for his or her basic personal needs for medical treatment, if the failure to receive medical treatment, as defined, results in a deteriorating physical condition that a medical professional, in his or her best medical judgment, attests in writing, will more likely than not, lead to death within 6 months, as specified.

See Linda’s story, “I’m Past Anger. I’m in Complete Despair.” June 6, 2019, in the archives.

Mark

Mark

PLEASE INCLUDE SMI IN YOUR PLATFORM by Dede Ranahan


Hi Mental Health for US

Just discovered you and your platform asking 2020 political candidates to talk about mental health in their campaigns. I see no specific mention of serious mental illnesses (SMI) such as schizophrenia, schizo-affective disorder, bipolar disorder, etc. Some people are not able to recover from SMI and languish in prison, in solitary, in not-so-good care homes or in their parents’ back bedroom for years and years.

I belong to a dozen Facebook groups of families of the SMI. Their stories are horrific and from across the nation. They’re not able to find help anywhere.

I want to support your efforts. I’ve been sending letters to candidates and calling on Facebook and on my blog for 2020 candidates to step up, speak about, and put forth national plans for SMI that do the following: Reform HIPAA, repeal the IMD exclusion, do brain research into these insidious brain diseases, provide for long-term care and short-term outpatient services, improve access, provide housing, supported education, and family supports. Not simply mental health. Not simply drug and alcohol addiction. Serious mental illness.

Would Mental Health for US be willing to expand its platform to include SMI - specifically spelling it out, not simply lumping it into mental health?

I hope your answer is yes.

You can read stories about SMI individuals and families — across the US - that I’ve been posting for 31/2 years on my website and blog. You can also read my own story in my book about my and my son’s struggles for over 25 years to get help for his SMI. He died in 2014 on a hospital psych ward. He was transferred, without my knowledge, out of county (lack of beds), his records weren’t forwarded with him, and I couldn’t get doctors to talk to me (HIPAA) even though I was on my son’s Advance Care Directive.

I unwittingly captured the last year of Pat's life in my book which, among other things, includes his story and many stories of individuals and families being failed by the system.

I will sign on and volunteer to help you once I’m satisfied that this undertaking includes SMI and specifically mentions it in your platform.

Thank you. I look forward to hearing from you.
Dede Ranahan

www.soonerthantomorrow.com
A Safe Place to Talk About Mental Illness in Our Families

Sooner Than Tomorrow — A Mother’s Diary About Mental Illness, Family, and Everyday Life
By Dede Ranahan with Patrick Ranahan
http://www.bit.ly/soonerthantomorrow

safe_image.php-2.jpeg

https://www.mentalhealthforus.net Please read this platform and send a message asking that it include SMI. Thanks.

http://www.bit.ly/soonerthantomorrow

A LETTER TO SHARE OR TO COPY AND PASTE by Dede Ranahan

TO ALL 2020 PRESIDENTIAL CANDIDATES:

I often hear discussions about mental health awareness, but don't hear discussions about serious mental illness (SMI). 
With SMI, (schizophrenia, schizoaffective disorder, bipolar disorder, 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 roughly 5% (10million) of the mentally ill in the US. And ten times as many people with SMI are incarcerated as are hospitalized. These individuals don't get the attention they deserve and consistently fall to the bottom of the proverbial heap.

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 exclusion repeal (beds), HIPAA 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 support will have the courage and insight to raise SMI issues and to create a plan to deal with them on a national scale. 

What is your plan for SMI? (Not mental health. Not drug addiction.) I would like to read about it on your website. Thank you for your prioritization of SMI issues.

If you agree, please share widely. Or copy and paste.

#seriousmentalillness #SMI #schizophrenia #schizoaffectivedisorder#bipolardisorder #depression #OCD #parityinmentalhealthcare #IMDrepeal#HIPAAreform #braindiseaseresearch #treatmentnotincarceration#soonerthantomorrow

http//www.bit.ly/soonerthantomorrow

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.