AN EXTENDED LIST OF SMI ISSUES THAT NEEDS TO BE ADDRESSED by Dede Ranahan

This list represents brainstorming ideas of advocates from across the country. They individuals, families, journalists, and professionals who are living/working with SMI. They have in-the-trenches experience. The list presents a partial picture of the depth and breadth of SMI issues in 2019. If you’d like a copy of this list and the 5-part plan posted yesterday, send me an email and I’ll send the documents to you. dede@soonerthantomorrow.com Thanks for your help.

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

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

  • Present patients and families with a social worker to support the family unit throughout the care process, including medication and psychiatric treatment.

  • Require mandatory HIPAA training for everyone in the medical profession and mandate a test on proven knowledge.

  • Develop a federal program for the administration of an advance directive (PAD) which includes a universal release of information and designates an agent if a patient’s capacity is lost.

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

4. PROVIDE A FULL CONTINUUM OF CARE

  • Provide inpatient care (IMD waivers), outpatient care (i.e., AOT, Clubhouses), and housing ( a 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.

  • Require prescriptions based on need not ROI for the insurance industry

  • Remove ER’s as entry for mental illness hospitalization. The ER process and its chaotic environment aren’t conducive to the well-being of SMI patients.

5.DECRIMINALIZE SERIOUS MENTAL ILLNESS

  • 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 illness facilities.

  • Move crimes that SMI commit in the federal system into state courts.

  • Mandate a way for families to provide medical history to jail/prison doctors to inform treatment.

  • Fund a digitized system for medical records in counties/hospitals to jails so information can be transferred immediately upon arrest and incarceration.

  • Provide uniform psychiatric screening of the incarcerated.

  • Use standardized protocols for medication of SMI prisoners.

  • Require strict limits on waiting for trial time.

6. PAY ATTENTION TO SUPPORTIVE HOUSING

  • Provide 24/7 supervised housing for those who cannot live independently.

  • Provide defined levels of support built around a person’s needs, especially long-term care.

  • Clarify Olmstead for SMI. Lease restrictive care isn’t always least expensive or best.

  • Examine, don’t ignore, a person’s ability to handle and benefit from a less restrictive setting.

7. REVAMP INVOLUNTARY TREATMENT

  • Use lack of insight (anosognosia) and grave disability as criteria for determining involuntary treatment.

  • Establish a federal standardized “need for treatment” involuntary commitment law.

  • Base restrictive settings on actual abilities, not wishful thinking or one-track plans.

8. INCLUDE EDUCATION

  • Require mandatory, institutionalized education about SMI for judges, sheriffs, attorneys, district attorneys, law enforcement, and first responders.

  • Require units of SMI education for educators — preschool through university.

  • Revamp Crisis Intervention Training and expand training to all counties.

  • Provide a health proxy form for college students to allow them to release medical information and name who can take care of them in a crisis.

  • Hold universities accountable and required to connect students to crisis intervention, especially during medical leave.

9. GIVE INCENTIVES

  • Incentivize the expansion of medical schools to graduate more psychiatrists, child psychiatrists, internists with psychiatry specialties, psychiatric nurse practitioners and physician assistants.

  • Allow loan forgiveness for providers treating SMI.

  • Give incentives for rural psychiatrists.

  • Incentivize more long-term treatment/stabilization of SMI.

  • Give incentives to psychiatrists to accept health insurance, especially Medicaid.

10. EXPAND ASSISTED OUT-PATIENT TREATMENT (AOT)

  • Federally clarify AOT and create a federal model for AOT law.

  • Offer AOT immediately to everyone upon diagnosis.

11. IMPROVE HOSPITALS

  • Build regional federal hospital for patients who cannot be treated in their home state’s hospitals because of lack of beds.

  • Improve reimbursements to hospitals which lose revenue on SMI patients.

  • End hospital discrimination against SMI “violent” patients and those “difficult to discharge.”

12. INCREASE RESEARCH AND EPIDEMIOLOGY

  • Fund NIMH research specifically for SMI.

  • Establish a Disability Advocacy Program for legal services for SMI when counties/states fail to provide long-term support services or when insurance/managed care and Medicaid fail to cover/pay for long-term supported services and treatment.

  • Pursue better national epidemiology studies for people with SMI.

  • Establish a federal law that requires states to track each SMI diagnosis with bad outcomes like death, homelessness, and incarceration.

13. REVISIT PARITY

  • Clarify parity for SMI and include Medicaid and Medicare in parity law.

  • Enforce violations against parity law.

14. ADDRESS SOCIAL SECURITY AND DISABILITY INCOME ISSUES

  • Change the way social security income for the disabled is taken by states when a patient is admitted to state operated mental health institutions, residential care facilities, and hospitals.

  • Increase disability income to a level where a person can survive and maintain reasonable housing.

16. CREATE PSYCHIATRIC CAMPUSES

  • Build psychiatric campuses with multiple levels of care, supportive housing from most restrictive to least restrictive, and separate independent living apartments.

  • Provide on-campus coffee shops, gyms, recreational facilities, and gardens where people with SMI could work with support as needed.

  • Provide substance abuse treatment services, AA or NA meetings.

OUR 2020 GRASSROOTS FIVE-PART PLAN TO ADDRESS SMI UPDATED by Dede Ranahan

This plan was developed by dozens of SMI individuals, families, professionals, and journalists from across the country. The five issues included in the plan were voted on from a long list of priorities as top priorities. If you’d like a copy of this plan, a cover letter, and an extended list of SMI needs, email me: dede@soonerthantomorrow.com. I’ll send you the documents so you can forward them to those within your sphere of influence — local, state, and national.

As the number of candidates in the 2020 presidential election cycle continues to decline, it’s important to thank those who’ve dropped out but developed good plans that include SMI — Steve Bullock, Kamala Harris — and to refocus our efforts on the remaining candidates - Republican and Democrat. Right now Buttigieg and Klobuchar have good plans. Warren and Booker are working on plans. The White House will be hosting a summit on Transforming Mental Health Treatment to Combat Homelessness, Violence and Substance Abuse on December 19. Thank you for your help.

2020 GRASSROOTS FIVE-PART PLAN
TO ADDRESS SERIOUS MENTAL ILLNESS (SMI)
(Updated December 3, 2019)

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

Note: Tomorrow I’ll post the extended list of recommendations.

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 BRING SERIOUS MENTAL ILLNESS INTO 2020 POLITICAL DISCOURSE by Dede Ranahan

This is the grass-roots effort of serious mental illness advocates from across the country. If you’d like to join us and send these materials — letter, Five-Part Plan, and an attachment of SMI needs to your political representatives and others in your spheres of influence, send me an email and I’ll email these materials back to you. Thanks so much for your help. Dede

dede@soonerthantomorrow.com

TO: All  2020 Presidential Candidates
SUBJECT: Serious Mental Illness (SMI)

So far, 2020 political candidates make rare mention of serious mental illness (SMI — schizophrenia, schizo-affective disorder, OCD, bipolar disorder, and major depression), and the lack of mental illness care in the US.

* The SMI population represents 4-5% (10 million) of the mentally ill in the US. That’s 10 million families and extended families (voters).
* Ten times as many people with SMI are incarcerated as are hospitalized.
* Some SMI individuals 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.
*It will cost billions to create a viable mental illness system. It’s costing billions, now, in prison over-population, homelessness and cities under siege, lost workdays, family disintegration, suicides, untimely deaths, inundated ER’s and hospitals, violence caused by untreated SMI, overwhelmed police, and in uninformed and misinformed criminal justice systems.

The Five-Part Plan enclosed is the collaborative work of grass-roots advocates from across the country —individuals, professionals, writers, journalists, caregivers, and mothers (always the mothers). Our intent is to put this plan in front of every 2020 presidential candidate. Right now, no candidate is talking about SMI. It’s as if it didn’t exist.

The steps in our plan are baby steps. We can’t immediately 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 2020 candidates — we know you have a lot on your plates and we appreciate your energy and efforts to make our country better. We’ve created this Five-Part Plan to give you a starting point and a way to introduce SMI into political discourse and public conversation.

We’re asking you to take four initial actions:
1. Please read our plan and make it your own.
2. Put your SMI plan on your campaign website.
3. Talk about SMI on the campaign trail and in campaign debates.
4. Talk with members of the SMI community. We’re willing and able to help you as you move forward.

The SMI community is searching for its 2020 presidential candidate. We’re a large, passionate, motivated, frustrated, hurting, and determined block of voters. We look forward to hearing from you.


Marie Abbott — Waterford, Michigan,
My grandson has autism, bipolar disorder, and development delays. Has his civil 
rights intact.

Jane Anderson — Illinois
My 38 year-old son has paranoid schizophrenia. He was diagnosed at 18. My husband and I are 
caregivers.

Tim Ash — Arcata, California
Caretaker of a volatile, unstable SMI family member because there are no options besides jail and the bushes or doorways.

David Bain — Sacramento, California
I’m living with chronic depression and epilepsy and working to divert SMI from prison into treatment.

Marti Rhoden Bessler — Alexandria, Kentucky
My son’s been suffering from schizoaffective disorder for 19 years within our failed mental health system.

Alisa Bernard — Jupiter, Florida
I have children with SMI.

Judy Bracken — San Ramon California
My  30-year-old son has schizoaffective disorder.

Katherine Smith-Brooks and Bob Brooks — Carlsbad, California
Our SMI son is now stable and working following effective treatment and the same psychiatrist for 20 years. We were his only advocates for many years.

Regina Gipson Burns — Hoover, Alabama

Leslie and Scott J. Carpenter — Iowa City, Iowa
Our son’s been suffering from under-treated schizoaffective disorder for 12 years. He lives in a group home with too few services. He’s been hospitalized 20 times.

Sue Chantry — Vacaville, California
I’ve lived here for many years and watched Mark Rippee, SMI and blind, on the streets of Vacaville with no mental health services.

Barb Cobb — Iowa
My SMI daughter’s been under-treated and under-supported by the current system. She’s endured over 20 hospitalizations and is barely surviving.

Christine Cushing — Vacaville, California
There are no resources or places to live for those who suffer from SMI. For a country that’s so progressed, we’re so far behind taking care of those with SMI.

Lori Daubenspeck — St. Croix, US Virgin Islands
My SMI son is a US Army vet. There’s no SMI facility here and one psychiatrist for the island. We’re in desperate need of facilities, doctors, and federal action.

Kathy Day — Folsom, California
My godson’s been discharged from hospitals many times while considered to be gravely disabled. Laws need to be based on need for treatment rather than time.

Katherine Flannery Dering — Bedford, New York
My brother, Paul, suffered with schizophrenia for 32 years of dwindling care. He died at age 48.

Lois Earley — Phoenix, Arizona
I’m the mother and legal guardian of an adult SMI daughter. I've been battling the behavioral health care system in Arizona since 2004. 

Darla Eaves — Everett, Washington
My husband committed suicide.  My son died in our psychiatric hospital. My daughter, thank God, is here with me and stays on her medication.

Donna Erickson — Abington, Massachusetts
My 34-year-old son has bipolar disorder. He’s been hospitalized 25+ times and cheated out of the life he wanted through no fault of his own.

Sonia Fletcher —- Mount Shasta, California
My daughter’s SMI was untreated when she shot and killed her father in a psychotic break. Our family is heartbroken and literally broken apart.

Anne and Tim Francisco — Orange County, California
Our SMI son was sentenced to prison for a nonviolent offense while he was in a state hospital. He ended his life by suicide while in solitary confinement.

Lynne Gibb — Ojai, California
My daughter’s suffered with schizo-affective disorder for 20 years. She’s been missing, homeless, and hospitalized, but never out of her family’s hearts and thoughts.

Elaine D. Gilliam — Myrtle Beach, South Carolina
My eldest son has paranoid schizophrenia. My eldest daughter committed suicide. Two children are wonderful retired military families.

Jeanne Gore — Shapleigh, Maine
Family member, Coordinator, National Shattering Silence Coalition

Pat Guinn — Lincoln, California
I have an adopted son with SMI.

Catherine (CJ) Hanson
Linda (Rippee) and Joseph Privatte
Lou Rippee — Vacaville, California
SMI blind son, brother, and brother-in-law. No mental health services for 3 decades. Solano County refuses to conserve.
Betty Plowman — I was a neighbor who observed this tragedy for 32 years and tried to help when no one else would.
Chris Plowman — I’ve watched this man waste away on the streets for 30 years untreated. Some people need our help and tax dollars; not be abandoned to rot.
Pam Wilcoxson — Mark’s family’s been fighting for help for him for many years and still have not gotten anywhere. 

Mark and Laura Harreld — Strawberry Point, Iowa
Our SMI son was caught in the criminal justice system for non-violent crimes. He ended his life, to avoid another prison sentence, while in a hospital under armed guard.

Dianne Harris — Grove City, Ohio
My son died of a co-occuring vascular condition before a treatment was found for his negative symptoms of schizoaffective disorder. More research is needed desperately.

Janet Hays — New Orleans, Louisiana
I created Healing Minds NOLA to bring residents, families and stakeholders together to explore alternatives to incarceration, homelessness and death for those suffering with SMI.

Amy Kerr and Paul Cox —- Pasadena, Maryland
We’re caretakers for a 23-year-old son who has schizophrenia and a friend with major depression and end stage renal failure. 

Jeannie Kneisly-Manley —  Elizabeth City, North Carolina
My son has schizophrenia. He has a criminal charge and no court date to get him in the hospital. If I hadn’t bailed him out, he’d still be in  jail waiting.

Stacy Kollias — Henderson, Nevada
I’m the mother/caregiver of a 30-year-old son suffering from schizoaffective disorder.

Dianne Lam — Oakland, California
My son has a dual diagnosis and schizoaffective disorder.

Carole McAfee — Salem, Oregon
My son is living with schizophrenia.

Sherri McGimsey — Morganton, North Carolina
My son is a Marine Veteran with schizoaffective disorder.

Gerri Mele — Cleveland, Ohio

Linda L. Mimms, MA, — Poway, California
The inability to get our ill family member prompt treatment has led to a worsened condition and uncertain prognosis which was totally avoidable.

Alison Monroe — Oakland, California
My 24-year-old daughter is a meth user who has schizophrenia. I’ve tried everything to keep her alive and off the street, with some success.

Nancy Moody — Cambridge, Ohio
My son has schizoaffective disorder.  He’s suffering from withdrawal, seizures, tremors, cognitive impairment, and hallucinations. No one wants to help him.

Mary Murphy  — Springfield, Oregon
My son has schizoaffective and bipolar illness.

Lyn Nanos, LICSW — Natick, Massachusetts
Author: Breakdown: A Clinician’s Experience in a Broken System of Emergency Psychiatry.

Karen Newton — Vacaville, California
My son has bipolar-schizoaffective disorder. While homeless, voices told him to hurt someone. He’s incarcerated while waiting for a bed in Napa State Hospital.

Kelly Nidey — Vincennes, Indiana
My son has struggled with bipolar/schizoaffective disorder for almost 15  years.

Teresa Pasquini — Contra Costa County, California
I’m mom to Danny who is surviving 20 years of suffering, suicidality, solitary, and schizoaffective disorder. There’s no federal action plan for families like mine.

Darlene Patrick —Farmington, Maine
My 32-year-old son has paranoid schizophrenia. He’s been in jail, the hospital, release, repeat.

Gema Pena — Hialeah, Florida
My son, Kristopher, was in solitary for 10 years. He attempted suicide, ate his own feces, was catatonic, and lost over 100 pounds.

Ron Powers — Castleton, Vermont 
Pulitzer prize winner, author of No One Cares About Crazy People
I’m the father of two sons afflicted with schizophrenia. One took his life in 2005.

Paula and Bruce Quertermous — Clinton Township, Michigan
Our 39-year-old daughter has bipolar disorder and cognitive disability from birth.

Dede Ranahan — Lincoln, California
Author: Sooner Than Tomorrow—A Mother’s Diary About Mental Illness, Family, and Everyday Life (2019). soonerthantomorrow.com. My son died in a hospital psych ward in 2014.

Margaret Reece and Greg Gazda — Butte County, California
Our SMI son has been hospitalized 5 times, arrested, and is currently in a mental health court program and living in Yolo County with his grandparents.

Arlene Renslow — Modesto, California
I have two sons with brain damage. One son has schizophrenia. Unless someone does something, things will get worse for everyone.

Mary (Courtney) Sheldon — Poway, California
Mother of 24-year-old SMI son. We’ve winged it for 5 years. My SMI brother died, with his “civil rights intact” behind a dumpster in Anaheim, California.

Martha Mccollister Sroka — Dunkirk, New York
My son has schizophrenia. It’s horrible watching your child change, struggle, and suffer. I request that SMI get the same attention and resources as any other medical illness.

Joanne Strunk — Lexington, Kentucky
My daughter’s been raped, homeless, hospitalized (40+times), and almost died lost in the woods for weeks. She’s dying of neglect due to SMI.

Shelly and Scott Switzer — Sandpoint, Idaho
We’re parents of a 33-year-old son with inadequately treated schizoaffective disorder in Missoula, Montana. SOS We’re barely hanging on.

Diana Mandrell Troup — Texas
My daughter spent 16 years in delusion and psychosis because of bad mental health care. She suffered 50+ involuntary holds, multiple tazings, and traumas.

Laurie Turley — Maine
My sister died due to HIPAA restrictions. One of the last things she said to me was, “They should have let you help me. I wasn’t in my right mind.”

Monica and Kimmo Virtaneva — Hamilton, Montana
Our son, Mika, took his life after the disease schizophrenia took his brain and the criminal justice system took his dignity.

Cheryle Vitelli — Newark, Delaware
I lived with my SMI son for 6 years while he was dangerous with only he and I in the house. Finally, a compassionate police officer pushed to get him help.

Darlene Been Watkins — Moulton, Alabama
My son, Shane, was denied treatment, while in psychosis, because there weren’t enough beds. Two days later, he was shot by police while I watched.

Anna Wellnitz — Oro Valley, Arizona
I’m diagnosed with SMI.

My son, Pat, before our world came undone. Read our story. Sooner Than Tomorrow — A Mother’s Diary About Mental Illness, Family and Everyday Life. On Amazon. http://www.bit.ly/soonerthantomorrow

My son, Pat, before our world came undone. Read our story. Sooner Than Tomorrow — A Mother’s Diary About Mental Illness, Family and Everyday Life. On Amazon. http://www.bit.ly/soonerthantomorrow

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.