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 FORWARD TO 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 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.

I'M PAST ANGER. I'M IN COMPLETE DESPAIR by Linda Rippee

I’m struggling. I’m not sure I’m the advocate for serious mental illness (SMI) that I need to be. I’ve not been successful. I see no change in my brother's life. Another advocate suggested I not focus on the horror's of Mark’s story. I know nothing else. My husband thinks I keep pushing, pushing, pushing the ball up the hill and every time the ball slips back down. Crushing me.

I offer suggestions to others, but what do I know? Really? I’ve not been able to help my own brother In three decades. What good advice could I give? None.

Two weeks ago, several people witnessed Mark in the middle of the street. He was delusional, screaming, beating his makeshift cane in the middle of traffic with injuries to his face, eye socket, and hands. I rushed there and called Adult Protective Services (APS). I don’t know if they responded. Three weeks ago, Solano County deemed my brother "competent". 

Two days ago, more people notified me that my brother was in bad shape. He appeared to have been injured or beaten. I called APS, again. They said, “Don't call us. Call Vacaville Police Department.” I did. The dispatcher said, “We could send an officer to check on him, but if he doesn’t want medical treatment or help, that’s his right.”

After all my advocating, I still can't initiate a welfare check on my brother, let alone a 51/50. People contact me and my twin and expect action. I may be inadequate for this task. The county has given us their final word. I’m lost right now. I can’t find the words anymore to make a difference. Love hasn’t changed anything. My love is not enough to change Mark’s life or the world he lives in.  

Some people seem to be amused, skeptical, and doubtful that anosognosia exists as part of SMI. This is why we need HIPAA reform. Not to take away everyone's rights, but to allow families of the SMI to get proper treatment for the loved ones who cannot comprehend decisions or consequences with their own brains.

I’m exhausted trying to open and change minds on this matter. I’m past anger. I’m in complete despair. I can’t accept that this is my brother’s life, and people are okay with that. That alone weighs me down. We’re desensitized as a society.

Solano County says change must come from the state of California or from the federal government. Serious mental illness and brain diseases affect more people — professionals and the general public — than other diseases. It’s insidious. Society cannot afford to ignore it. Serious mental Illness will not be ignored. It doesn’t care what political party you favor. It doesn’t matter if you have the most loving family or what race or religion you are. It will infect you and has no qualms about affecting all who love you and come in contact with you.

I'm exhausted trying to open and change minds. The only minds we touch are of the families who already know the despair and pain of members they love with SMI. The ugly truth is, if people don’t have loved ones with SMI, they can’t hear us. It’s like we’re speaking a different language.

Society, we don’t need more awareness. We need more action!

Linda’s brother, Mark. Linda says, “Mark’s face and head are held together with wires and metal plates. He lost both eyes, but they had one eye still connected by a sliver, so they tried to save that globe. It didn’t work and he’s 100% blind. Mark’s head was split T-shape across his face and eyes and he lost most of his frontal lobe. Through 55 other surgeries, he lost further brain matter. He has a metal rod from crotch to ankle. Most say he looks like Frankenstein. I still look at him, directly, — where the eyes to his soul used to be.”

Linda’s brother, Mark. Linda says, “Mark’s face and head are held together with wires and metal plates. He lost both eyes, but they had one eye still connected by a sliver, so they tried to save that globe. It didn’t work and he’s 100% blind. Mark’s head was split T-shape across his face and eyes and he lost most of his frontal lobe. Through 55 other surgeries, he lost further brain matter. He has a metal rod from crotch to ankle. Most say he looks like Frankenstein. I still look at him, directly, — where the eyes to his soul used to be.”

Note: AB 1769 — This bill just died in committee. It would have appropriated money to be used to plan, construct, and operate two integrated mental health residential facilities adjacent to the county’s existing health and social services campus. There’s no mental health facility for Solano County.

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

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ONE MOM'S LIST OF SMI NEEDS by Stacy Kollias

The “mental health system” isn’t really a system of care. There is no real “system” that exists.

We need funding to be spent on inpatient beds where the SMI (serious mental illness) patient stays until the “right” meds are found and he/she has fully stabilized. Not the treat and street situation we have now.

We need 24/7 intense supportive housing after discharge to keep the SMI on track with meds, shelter, food, and safety.

We need to build our housing infrastructure to accommodate differing levels of care for this population so, as they progress in recovery, they have a home they can afford and remain in.

We need to build outpatient clinics who work closely with the hospitals and residential treatment facilities to continue the same level of care when SMI are outpatients.

We need to change our involuntary civil commitment laws to mandate medication for inpatient and outpatients.

We need to repeal the IMD Exclusion.

We need HIPAA reform.

We need to fund research for schizophrenia and other serious mental illnesses.

We need to stop the discrimination of SMI and call it what it is — a brain disease.

We need neurologists and psychiatrists to work together and we need more of them.

We need clinical nurses and competent case workers.

We need so many vital things that aren’t currently in place, or they are failing miserably, and we watch our loved ones living their lives as the walking dead.

I would love to help everyone with a mental illness, but the truth is the chronically symptomatic SMI have been getting the shaft for generations. Since they can’t usually grasp their own best interests and needs — let alone articulate them in a way that will be heard and respected — they’re easily pushed to the back of the line. 

Stacy

Stacy