Advocates Ask 2020 Presidential Candidates To Add Mental Health Reforms To Their Platforms.

(8-19-19) Dede Ranahan, an author and mental health advocate whose son, Patrick, died in 2014 because of “our inept, non-existent mental illness system,” has launched a national effort to get 2020 presidential candidates to discuss serious mental illnesses.

Her effort began before recent mass shootings and discussions by President Trump about mental health and violence.

Along with other advocates, parents, authors, and mental health professionals, Ranahan is urging candidates to adopt a five part plan. It already has been submitted to Joe Biden, Amy Klobuchar, Cory Booker, Pete Buttigieg, and Tim Ryan.

“It’s not comprehensive,” she said in an email about the plan, “our mental illness system needs much more, but it’s a beginning. We’re asking our 2020 presidential candidates to take our plan, make it their own, and talk in their campaigns about serious mental illnesses. We’re telling them we want to see mental health/illness plans on their campaign websites.”

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

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.

 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.

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.

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, 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.

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.

In the packet that Ranahan is distributing, candidates are told:

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.

In an email, Ranahan explained:

“If it takes a village to raise a child, it takes a country to help a child with SMI. I lost my son, Patrick, in 2014 to our inept, non-existent mental illness system. I don’t want another mom or dad to lose their son or daughter.

Please join us by sending your  email address to me at [email protected]

I will send you the cover letter and plan documents so you can forward them to your local, state, and federal representatives, your local media outlets, and others within your sphere of influence. They need to be educated. They need to step up and help SMI individuals and families who fight every day for life and death services.

Before SMI becomes the victim — blamed as responsible for gun violence — and before politicians use it more and more as a scapegoat, please join us

Dede Ranahan  website is: www.soonerthantomorrow.com    

Author of Sooner Than Tomorrow – A Mother’s Diary About Mental Illness, Family, and Life

A partial list of advocates who have signed on to this campaign:

Marie AbbottWaterford, Michigan,

My grandson has autism, bipolar disorder, and development delays. Has his civil

rights intact.

Jane AndersonIllinois

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 BainSacramento, California

I’m living with chronic depression and epilepsy and working to divert SMI from prison into treatment.

Marti Rhoden BesslerAlexandria, Kentucky

My son’s been suffering from schizoaffective disorder for 19 years within our failed mental health system.

Alisa BernardJupiter, Florida

Judy BrackenSan Ramon California

My  30-year-old son has schizoaffective disorder.

Katherine Smith-Brooks and Bob BrooksCarlsbad, 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 BurnsHoover, Alabama

Leslie and Scott J. CarpenterIowa 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 ChantryVacaville, 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 CobbIowa

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 CushingVacaville, 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 DaubenspeckSt. 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 DayFolsom, 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 DeringBedford, New York

My brother, Paul, suffered with schizophrenia for 32 years of dwindling care. He

died at age 48.

Lois EarleyPhoenix, 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 EavesEverett, 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 EricksonAbington, 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 FranciscoOrange 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 GibbOjai, 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. GilliamMyrtle Beach, South Carolina

My eldest son has paranoid schizophrenia. My eldest daughter committed suicide. Two children are wonderful retired military families.

Jeanne GoreShapleigh, Maine

Family member, Coordinator, National Shattering Silence Coalition

Pat GuinnLincoln, California

I have an adopted son with SMI.

Catherine (CJ) Hanson

Linda (Rippee) and Joseph Privatte

Lou RippeeVacaville, 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 HarreldStrawberry 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 HarrisGrove 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 HaysNew 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 KolliasHenderson, Nevada

I’m the mother/caregiver of a 30-year-old son suffering from schizoaffective disorder.

Dianne LamOakland, California

My son has a dual diagnosis and schizoaffective disorder.

Carole McAfeeSalem, Oregon

My son is living with schizophrenia.

Sherri McGimseyMorganton, North Carolina

My son is a Marine Veteran with schizoaffective disorder.

Gerri MeleCleveland, 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 MonroeOakland, 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 MoodyCambridge, 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, LICSWNatick, Massachusetts

Author: Breakdown: A Clinician’s Experience in a Broken System of Emergency Psychiatry.

Karen NewtonVacaville, 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 NideyVincennes, Indiana

My son has struggled with bipolar/schizoaffective disorder for almost 15  years.

Teresa PasquiniContra 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 PatrickFarmington, Maine

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

Gema PenaHialeah, 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 PowersCastleton, 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 QuertermousClinton Township, Michigan

Our 39-year-old daughter has bipolar disorder and cognitive disability from birth.

Dede RanahanLincoln, 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 GazdaButte 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 RenslowModesto, California

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

Mary (Courtney) SheldonPoway, 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 SrokaDunkirk, 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 StrunkLexington, 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 SwitzerSandpoint, 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 TurleyMaine

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 VirtanevaHamilton, Montana

Our son, Mika, took his life after the disease schizophrenia took his brain and the criminal justice system took his dignity.

Cheryle VitelliNewark, 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 WatkinsMoulton, 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 WellnitzOro Valley, Arizona  I’m diagnosed with SMI.

 

 

 

About the author:

Pete Earley is the bestselling author of such books as The Hot House and Crazy. When he is not spending time with his family, he tours the globe advocating for mental health reform.

Learn more about Pete.