The documents below usher in a revolution. They describe a bold new movement, a national front organized to break the silence of the stricken and reverse the longstanding political neglect of America’s decrepit mental healthcare policies and institutions.
The advocate and author (Sooner Than Tomorrow) DeDe Ranahan has completed a wide-ranging national canvass of those in the “sub-nation”: the mothers, caretakers and advocates of people suffering from serious mental illness: schizophrenia, bipolar disorder, and related incurable afflictions.
Her tireless work has produced historic results: the first comprehensive, deeply informed list of things that absolutely need to be done to restore safety, humanity, and hope to a strata of victims that has been marginalized and abused since medieval times.
The dynamic advocacy team of Scott and Leslie Carpenter is distributing these documents to the candidates visiting Iowa prior to the Democratic presidential primaries. The Carpenters have reported that the response so far has been heartening.
DeDe Ranahan’s survey results are vital both in themselves and as building-blocks toward a future unification of efforts to reclaim the mentally ill and restore them to meaningful lives. She deserves the thanks of everyone who has been touched by this abhorrent malady. It seems that someone, after all and at long last, does care about crazy people.
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
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.”
“I was a neighbor who observed this tragedy for 32 years and tried to help when no one else would.”
“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. “
“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.”
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.
EXTENDED LIST OF SMI NEEDS
This list represents brainstorming ideas of advocates from across the country. They’re individuals, families, 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 that need to be addressed.
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.
One thought on “Voices for Mental Healthcare Reform, United at Last!”
This is absolutely brilliant, beautifully written, and I couldn’t agree more with every single word. If there is anything I can do to help with this, count me in. I have been a psychiatric nurse for 47 years and counting, most of them as a nurse practitioner in Detroit hospitals connected with universities. Since I began my practice in 1972, the mental health system has slowly gone downhill, escalating wildly when then-Gov. John Engler closed most of Michigan’s state hospitals, literally dumping thousands of people with SMIs into the streets. Every winter our hospital received multiple patients with frostbite leading to gangrene leading to amputations. We received multiple reports of suicides and patients in jails/prisons. I teach psychiatric nursing now in a local university, and take my students onto an acute care locked psychiatric unit in a general hospital. In their seven week rotation there, they often see the same patient admitted and discharged three times! They’re medicated, discharged to a group home or a shelter, stop taking their medication because they are unable to recognize their need for treatment as a result of their illness, get re-admitted, re-medicated, and the cycle continues. EXPENSIVE, INHUMANE, AND USELESS treatment!!!! We are offering third world services. There used to be five patients to one registered nurse and one mental health tech. The treatment team, not the insurance companies, decided when a patient was ready to leave, patients received ample care and teaching and therapy, and patients who were not ready for discharge from an acute care facility were transferred to state institutions for long term care or for more treatment until they were ready for discharge from the long term facility. What we have now is a merry-go-round of admission and discharge with meds as the inpatient treatment, a few harried nurses and mental health techs, grossly understaffed, glued to their computers rather than interacting with their patients. Please let me know what I can do to help with your effort. This is totally accurate and absolutely brilliant.