A ruling by the Vermont Supreme Court, in my home state, has decided in favor of a patient suffering from schizophrenia who does not want medication or treatment. It’s a supremely vexing question, but I think the court erred.
The rock has rolled downhill again. The Sisyphean slog toward rational mental healthcare once more has been flattened under the weight of judicial folly.
On Friday, November 15, the Vermont Supreme Court ruled in favor of a plaintiff suffering from years of diagnosed schizophrenia—a person [mark this word] with a history of episodic violence and aggression, and periods of catatonia—who had asked not to be medicated against his will.
The ruling means that this plaintiff has likely ingested his last medical stabilizer against psychotic episodes—the final internal barrier to hallucination, delusional thinking, disordered speech and movement; and, in rare cases, violence to themselves and/or others. (It’s also likely that he wrote his request while stabilized, an irony that I will examine later.)
According to the court decision itself, as reported in the Rutland (VT) Herald, this person’s propensity to violent and aggressive acts while in the grip of psychosis is not merely theoretical. He has committed such acts before.
The court’s wording: “Patient has a history of unpredictable violence and unprovoked aggression toward hospital and treatment facility staff, police and others.”
Given the annals of psychiatric case history, there is little reason to doubt that, when seized by psychosis in the future, he will do so again.
My own family’s experiences testify to this likelihood. Our younger son Kevin was diagnosed as schizophrenic in 2003. He rejected his antipsychotic medications in 2005, and in July of that year, a week before his 21 st birthday, Kevin hanged himself in the basement of our Middlebury home.
It’s essential to pause here and parse the meaning of “person.”
The man in question—the core person—is not inherently a criminal, just as life-affirming Kevin was not inherently suicidal. The authentic person is described as intelligent, a reader, a researcher of information. It is the incurable disease itself, which invaded the person’s brain and has rendered his life hellish since the age of 12, that bears responsibility for his aberrant impulses.
The basis for the court’s ruling seems to be an “advance directive” created and signed by the patient in 2017, in which he stated that he wanted no neuroleptics or antipsychotics, no psychiatric drugs, “no medications I do not desire at the time.” Advance directives are documents that state the signatory’s medical-care wishes in the event the writer has lost the capacity to make such decisions on his own.
I believe that the Vermont Supreme Court’s ruling in this case was misguided. I believe it poses risks to people who come in contact with the plaintiff (or more accurately, with his psychosis); risks to the plaintiff himself; and risks as a dangerous precedent, for the same general reasons.
I don’t write these words lightly. Severe mental illness is a uniquely accursed affliction that defeats good intentions and pits legitimate purposes against legitimate purposes, as in this case. No one wants to live in a society that withholds a person’s right to control her medical destiny.
But there is that stubborn word again: “person.” It’s revealing that the plaintiff wrote and signed his advance directive in 2017, a period in which he was in the care of the Brattleboro Retreat for a sixth time and was being administered the antipsychotic medication compound trifluoromethyl phenothiazine. Presumably he was in relative control of his thoughts and actions. If so, he was in (relative) control exactly because of the medication. This is the irony I promised earlier.
I write “relative” control because a frequent traveling companion of schizophrenia is anosognosia—a medical term for “lack of insight.” Anosognosia shows up in about half of all schizophrenia cases. Its effect is to convince the sufferer that everything is fine. There is no disease. And so, no need for medications and their often harsh side effects.
Ultimately, the Vermont Supreme Court decision was grounded in “rights”: the “right” of a citizen to be free from involuntary medical treatment if he so decides. But what if the decider is not the citizen but the disease itself? In my clearly non-judicial opinion, the “right” in such a case must default to the core person: the entity who will be among those harmed, perhaps fatally, by the disease’s “harm to self or others.”
Vermont, and the nation, need to drastically reconsider the balance of legitimate purposes in granting medical immunity to people who are incapable of judging that right in a rational way. The entire question of “rights” in this context is an artifact of overzealous liberal activism in the 1960’s. Vermont is a fairly liberal state, and I personally hold to liberal views. But this is not really a question of ideology. It is a question of common sense.
The author of the best-selling BRAIN ON FIRE is back with a riveting investigation into the life and works of David Rosenhan, the late Stanford psychologist known for his influential views that challenge the validity of psychiatric diagnoses. Her tour schedule of The Great Pretender is below. If you live in or near a city where she will be speaking, I urge you to attend.
I’m taking the liberty of reprinting the book-tour schedule sent to me and others this morning by my friend Susannah Cahalan. You may recall Susannah’s stunning 2012 memoir Brain on Fire: My Month of Madness, in which she chronicled her own descent into what appeared to be severe mental illness until she was rescued by a brilliant doctor who recognized it as a rare autoimmune disease of the brain. The 2016 film adaptation starred Chloe Grace Moretz as Cahalan.
In the 1970s, David Rosenhan sent seven volunteers into various psychiatric asylums around the country to test the validity of the doctors’ diagnoses and conclusions. The results shattered existing opinions of psychiatry and led to the closing of several hospitals. In this masterpiece of dogged, almost incomprehensibly persistent intellectual detective-work and sustained reasoning, Cahalan has exposed the flaws, the deceptions and the distorted understandings that found their way into society on the ballast of Rosenthal’s influence. The book is destined to become a standard of its genre and a daunting model for immersive journalism.
in conversation with the legendary St. Louis Post Dispatch columnist Bill McClellan.
NOVEMBER 13 – MINNEAPOLIS
Magers & Quinn — sign up here The Great Pretender‘s own “footnote” will be making a special appearance….(earlier in the day I will be doing a talk at the University of Minneapolis, email me for details).
Andrew Romanoff could be our long-awaited congressional beacon of mental healthcare reform–if the lifers among the Democratic power-brokers will give him the chance to shine.
I traveled to the Denver suburb of Lakewood, Colorado, over the weekend, to flap my gums about reforming mental healthcare in America. And found myself listening to the most stirring talk I have ever heard about reforming mental healthcare in America.
Hint: it wasn’t mine. It covered much of the same ground, but with the riveting pace, passion and purpose that educates and inspires.
The talk was delivered without notes by a guy who came so late to the event that people were starting to walk toward the exits. When they spotted him coming through the door, they rushed back to their tables and shouted in unison: “You’re LAAAAAAATE!”
The shout was not hostile. It had been rehearsed: an affectionate scolding to one who was known and loved by the people there, who understood that he is deluged with speaking obligations.
The speaker did not disappoint. His remarks galvanized the audience, which erupted in a standing ovation at the conclusion. He had completely upstaged a certain gum-flapping speaker from earlier in the evening. The gum-flapping speaker hardly minded. He recognized that if the political will of Colorado voters were to move in the right direction, this late-arriving figure could well be the charismatic figurehead of the mental-health reform movement from the floor of the United States Senate.
If that should happen–well, better late than never.
The occasion was a gala honoring Heart-Mind-Connect, a new entrant in the expanding archipelago of grass-roots advocates for fixing our broken systems for reclaiming the mentally ill. H-M-C was recently organized by a small collective headed by the singer-songwriter Maree McRae, whose son Stephen was stricken with a rare disease known as common variable immune deficiency. CVID, a genetic disease, attacks antibodies that fight infections, and can produce schizophrenia-like behavior in its victims.
The galvanizing, late-arriving speaker was Andrew Romanoff, 53, a Democratic candidate for the U.S. Senate in 2020. Romanoff is campaigning to get past a crowded primary field that includes the former Colorado governor, John Hickenlooper, so that he can take on the incumbent Senator, the Donald Trump-supporting Cory Gardner.
Romanoff holds degrees from Yale and the University of Denver Sturm College of Law, and a master’s degree in public policy from the John F. Kennedy School of Government at Harvard. He has researched the Ku Klux Klan for the Southern Poverty Law Center. He has taught English in Nicaragua and Costa Rica.
So naturally (according to Romanoff’s own accounts) the intrepid and visionary Democratic Senatorial Campaign Committee has done its best to make him disappear. Apparently the DSCC prefers the easy listenin’ strains of the incumbent to the reformist drums and trumpets of candidates such as Romanoff.
As Channel 4, the CBS affiliate in Denver, reported in August:
“The DSCC is a powerful political machine that spends hundreds of millions of dollars each election and Romanoff says it is threatening polling, media and other political consultants that if they work with him, it will cut them off.”
“The DSCC has endorsed John Hickenlooper. Romanoff says helping Hickenlooper is one thing, sabotaging his campaign is another.”
Romanoff’s focus on mental healthcare springs from personal experience–as it does for so many advocates and policymakers.
During his tardy appearance at the H-M-C gala, Andrew Romanoff spoke for about twenty electrifying and lucid minutes, sans suitcoat (the polar opposite of being an empty suit, it occurred to me), tie loosened, fingertips in his trousers pocket, crisply ticking off the goals and the challenges of the mental healthcare reform movement. I did not take notes–no one at the event had prepared me for the eloquence and accuracy and force of Romanoff’s words. I can guarantee one and all, however, that the standard-bearer we have all longed for within the halls of political power may be working his way there.
The emotional peak of his remarks came as Romanoff recounted the horrific story of a family member who put a pistol to her head in 2014 and pulled the trigger.
The victim was Romanoff’s first cousin. “I thought of as her my kid sister,” he said. The calamity occurred without warning, without advance hints that the young woman was disturbed. “Her mom and dad and I–the four of us–were celebrating New Year’s 2015 when she walked into the backyard and killed herself.”
Romanoff’s casual, wry demeanor changed as he briefly told this story. His eyes filled and he paused several times.
A cynical politician–perhaps a lifer on the Democratic Senatorial Campaign Committee–might have seen this moment as calculated; a carefully rehearsed, twice-told tale manufactured to elicit sympathy.
I choose not to think so. As Huck Finn said, I been there before. I doubt that many readers of this blog, burdened in private by their own bereavements, would think so either.
I choose to believe that Andrew Romanoff is the goods: as a potential voice in the Senate for enlightened reform of our country’s shameful mental healthcare systems; but also as a voice for enlightened governance generally.
“There is a crime here that goes beyond denunciation. There is a sorrow here that weeping cannot symbolize. There is a failure here that topples all our success.”
Vacaville, California, has a history of popular uprisings to confront the powerful as they violate the humanity of the dispossessed.
In 1932, organizers came to Vacaville to organize the Cannery and Agricultural Workers’ Industrial Union, which fought the starvation-wage exploitation of farm and orchard laborers by the state’s powerful growers. The CAWIU went on strike that December–one of 140 strikes, some of them violent, that occurred between 1930 and 1939. These actions caught the attention of John Steinbeck, and triggered his impulse to write The Grapes of Wrath, which won the Pulitzer Prize in 1940 and contributed to his Nobel Prize for Literature in 1962.
On Tuesday, October 8 (tomorrow, as I write this) one or both these institutions will render decisions that will either end Mark’s twelve years of unimaginable suffering on the small city’s streets, or cast him back into the chaos and brutality of those streets as if he were a leper from the slums of New Dehli.
Mark Rippee is 56 now; emaciated, sickly, and delusional, as he has been since the motorcycle accident in 1987 that cost him his vision, crippled him, and left bits of his brain scattered in an alfalfa field.
Winter is coming on. Mark has routinely been beaten and robbed over the years by random thugs who have taken a succession of walking sticks his sisters have provided him, as well as blankets that have been his only insulation against the cold.
His age and failing health augur against his surviving the cold months out-of-doors one more time. The ongoing, unfathomable indifference of the County board to his physical exposure, and the equally bewildering failure of Kaiser Permanente’s psychiatrists to find anything wrong with his psyche, augur against his rescue by those whose charge is the public health and safety.
The “policy” decisions on October 8 at the Kaiser Permanente Vacaville Medical Center and the Solano County Board of Supervisors, then, probably amount to a life-or-death sentence for James Mark Rippee. “Policy” explains why Mark Rippee remains homeless. The pertinent “policies” ensnarled in the maimed reasoning of brain-damage victims and in the equally maimed consciences of bureaucrats. “Policies” have constricted his sisters, Linda Privatte and C.J. Hanson, as they have struggled to gain simple shelter and medical care for their brother, whose fog of reasoning blocks him from giving necessary consent.
Mark is in the hospital because on September 14 he stumbled into traffic and was hit by a car as he wandered blindly along Monte Vista Avenue in Vacaville. The impact knocked his head against the concrete and re-opened an abcess. The pain overcame his delusional resistance to being hospitalized or treated (a common resistance, known as “anosognosia,” or lack of insight, in schizophrenia victims).
Mark Rippee’s hospital stay seems likely to end on October 8, when the Kaiser Permanente Vacaville Medical Center will release him to–well, it will release him. It is not the “policy” of the Kaiser Permanente Vacaville Medical Center to give much of a rap where patients such as Mark Rippee end up. “Policy,” you see, allows no moral dimension. It normally is accompanied, however, by a burning desire not to spend money.
And on this same day the bureaucracy known as the Solano County board of supervisors will hold yet another hearing to hear opinion on whether Mark Rippee’s sisters should, at last, be granted a conservatorship that would allow them to make decisions on his behalf. Conservancy, like hospital and psychiatric care, requires the expenditure of money. Such money is sometimes available through state and federal government. But then there is that annoying matter of consent by the patient.
One thing will be different, in Mark Rippee’s favor, on this Tuesday. Public opinion is at last beginning to coalesce in his favor. The sisters’ exhaustive efforts at rallying community support have started to pay off, in the form of rallies and an expected turnout at the supervisors’ hearing. Advocates around the country are on standby, alerted by Facebook postings. A T-shirt is available for purchase online. It bears Mark’s ravaged likeness and the declaration that he blurted out, surprising everyone, during his recuperation. It should serve as a manifesto for all his brothers and sisters on this country’s streets:
“I am NOT homeless! I have a home! My home is the United States of America!”
Mark James Rippee
On Tuesday, October 8, we will see whether the United States of America fulfills Mark Rippee’s cry of trust.
Listen to the words above. Say them aloud. And try not to feel stirred. Angry. Transformed. Try not to feel inspired to stop what you’re doing and throw your energies into a cause that is becoming a national movement.
Maybe you can do this. Maybe you can hear those words and remain unmoved. Maybe you can hear them and shrug and turn back to the duties of your day.
I cannot. I can’t stop hearing them. I hear those words as fierce poetry. More to the point, I hear them as a manifesto, one that should take its place among the great declarations that have defined our nation and our obligations toward it, and its most maimed and outcast citizens.
I hear it delivered with the same patriotic pitch as “Give Me Liberty Or Give Me Death.” “The Better Angels of Our Nature.” “Ask Not What Your Country Can Do for You; Ask What You Can Do for Your Country.” “We Can Do Better.”
The words are the more compelling in that they were uttered–on Wednesday, October 2–by a man so grievously crushed by brain injury, schizophrenia, blindness, broken bones, and more than twelve years struggling for life on the streets that one hardly imagines him capable of speaking a coherent sentence, much less this burst of eloquence.
And this is exactly the fundamental barrier that inhibits people and political bodies from doing more to rescue the mentally ill who cling to existence in desperate circumstances–to rescue the mentally ill, period. Consciously or unconsciously, they are seen as not fully human. Monsters. Half-sentient beings who “don’t even know they’re living that way; but perhaps they like living that way,” in the considered analysis of the current president of the United States.
These are essential reasons why, as it has been said, no one cares about crazy people.
The man who spoke this manifesto is James Mark Rippee of Vacaville, California. You know Mark’s story if you have followed several entries in my blog. Nearly killed in a collision while riding his motorcycle in June 1987 that blinded him and left parts of his brain in an alfalfa field; prohibited by his distraught father (who died of a stroke a few years later) from commitment to an institution; endurer of nearly fifty operations to remove abscesses from his brain; cared for by his sisters Linda and CJ until his violent psychotic episodes made him a danger in the household; a street refugee for a dozen years and counting as the two sisters have petitioned his case to the blind eyes and deaf ears of numerous agencies and levels of government.
The sisters’ goal is simple, and reasonable to anyone with a bit more compassion than God gave a goose, or a Solano County pol: to secure conservatorship for Mark a measure that allows county public health officials to steer mentally ill and homeless people toward housing and medical treatment without their consent.
(The requirement of consent has, for more than half a century, stood as a vexed impediment to providing medical and psychiatric care for people in psychosis who refuse to admit that they need it. Designed to protect such victims from fraud and predators, “consent” in practice has blocked emergency help victims of psychosis who will not or cannot admit they are ill.)
Linda and CJ have fought across two decades for their brother’s reclamation–for some mechanism of policy that would remove him from the streets where he has been routinely ridiculed, robbed, and beaten up–and into some safe place; some room; some bed; some sanctuary where doctors could nourish him, salve his wounds, give him medications to tame the psychotic demons inside him.
No agency in the state of California is interested. California harbors half the homeless people in the United States, and so the violate humanity of Mark Rippee has not sunk in. He is just another statistic. The Solano County Board of Supervisors has long since grown tired of the sisters’ petitions and their pleading. They have stopped pretending to care. They say that Mark Rippee is not their responsibility. Linda and CJ believe otherwise. But they have lacked the money and the access to public attention to make their case.
Wavelets of sympathy, gestures toward “doing something,” arise and fade. And Mark Rippee edges ever-closer to a sordid death on the streets of Vacaville.
Ironically–and ironies glut the world of mental illness–it has taken another vehicle accident to galvanize a fresh groundswell of support for Mark Rippee’s cause.
On the evening of September 14, as Mark wandered blindly along Monte Vista Avenue in Vacaville, he stumbled into traffic and was hit by a car. (Until then, he miraculously had eluded such a mishap during his years on the streets.) His head struck the concrete pavement, re-opening the abscess behind one of his eye sockets. The pain evidently was so intense that this time Mark agreed to be hospitalized.
At this writing, October 4, Mark remains in a Vacaville hospital. His sister Linda has been with him. (CJ’s mobility has been limited by illness.)
It was a nurse’s question about Mark’s residency, and Linda’s response to it, that prompted Mark’s burst of eloquence.
“The nurse came in [to Mark’s room] and questioned me about what equipment or help he has at home,” Linda told me by email. “I said without thinking, ‘He is homeless.’ And Mark loudly said, ‘I am NOT homeless. My home is the United States of America!'”
Linda added, “If only he knew how he was abandoned by his own country.”
Mark Rippee’s abandonment; at least, his invisibility, may be near an end. While it is true that every level of American governance has ignored him or brushed him aside so far, a grass-roots movement–tiny in numbers yet explosive in its sudden presence and growth–has sprung up in his behalf.
On September 30, a Solano Community College student named Kacie Hill created a Facebook page, “Mark of Vacaville.” . By Friday afternoon, it had attracted 1,300 members. A young Vacaville man, Jaden Ghent, began printing T-shirts in various colors, with images of Mark and the text of his manifesto. A rally on his behalf is being planned for Sacramento, the state capital.
If the Mark Rippee story is in fact arriving, it will not be a moment too soon. He is 56 now, and obviously in terrible health. If he is not rescued from the streets soon, especially with winter approaching, his life may end soon.
I have been convinced for two years–since discovering his plight upon commencing this blog–that Mark’s saga is of national significance; that this tragic, deformed man might well serve as a living symbol of so much that is deformed in our systems of mental health care. In these two years I have contacted political figures (including the Solano County Board of Supervisors), media watchdogs, and mental health advocates on his behalf. The advocates have shown interest but none has had an idea for how to break through. The rest have remained stonily silent.
But last Wednesday, with one impassioned, eloquent outburst, Mark Rippee may have done the trick himself. However improbably, he has risen up from his tortured silence to declare himself a man. Whose home is the United States of America.
And people–ordinary grass-roots people, if not (yet) those who represent the United States of America–listened.
And the silent, suffering, frequently incoherent James Mark Rippee of Vacaville, California, may yet transcend his victimhood and become the standard-bearer of reclamation that we have all been looking for.
The good news is that President Trump wants to do something about homeless Americans on the streets.
The bad news is that President Trump wants to do something about homeless Americans on the streets.
On Monday, newspapers and television networks broke the news that the President of the United States, whose name is Donald Trump, had at last swiveled the full attention of his very, very large brain to one of the most appalling crises confronting American cities: the crisis of homeless people on the streets.
Social scientists and others of sadly lesser intellect have noticed the crisis as well, of course, and analyzed it to the best of their limited ability: as a vast ongoing human calamity with dire implications for public health (the containment of hepatitis and opioid epidemics, for example); community and family stability, criminal justice and law enforcement, the control of dangerous drugs, productivity and the employment base.
These are vitally important but largely utilitarian considerations. They do not contemplate the profound moral/religious dimension of this malady: the obligation to reclaim disintegrating human lives.
Few agents of disintegration are more darkly effective than mental illness–serious mental illness (incurable brain diseases such as schizophrenia) in particular. A 2015 survey by the The U.S. Department of Housing and Urban Development, the latest available, reported that of the nearly 565,000 people who were homeless on a given night, fully one-quarter, or 140,000, suffered from a S.M.I. (Serious Mental Illness). Nearly half, or 250,000, were in the grip of some sort of mental disorder.
S.M.I. victims, their reasoning powers diminished or gone, are essentially helpless on the streets. Cut off from providers of stabilizing medication, they are prey to robbers, thugs, thieves, and sometimes rogue police officers. On rare occasions, they become predators as well: upon others, and upon themselves, via suicide.
That is the context of the societal predicament which, nearly three-fourths of the way through his term of office, has activated the engines of President Donald Trump’s very large intellect.
It is clear from this interview that Donald Trump does not see homelessness as a social-justice problem or a humanitarian problem. He sees it as a cosmetic problem. One that “started two years ago [sic]”
It is further clear that the homeless are inconveniences. Disgraceful pests who make beat-walking police officers sick. “I mean actually they’re getting very sick.” They are affronts to civic pride: human (or semi-human) obstacles to decent upstanding work-loving citizens. The homeless make it very difficult for office-workers to get to work, you see, and thus are ruining our cities. “You have people that work in those cities,” Donald Trump revealed to his pal Tucker Carlson not long ago. “They work in office buildings. And to get into the building, they have to walk through a scene that nobody would have believed possible three [sic] years ago.”
–And let Donald Trump tell you something: the threats posed by the homeless reach far beyond those that menace nauseated beat-cops and nimble-toed office workers. The homeless strike at the very foundations of America’s might. Take Washington, D.C. (before Donald Trump got in): “When we have leaders of the world coming in to see the President of the United States and they’re riding down the highway . . . they can’t be looking at that [sic]. I really believe that it hurts our country.”
–Don’t get Donald Trump wrong. Nobody is more ruefully forgiving of the barbaric horde than Donald Trump. “San Francisco–I own property in San Francisco; I don’t care, except it was so beautiful.”
–Because, you see, Donald Trump is very, very educated about mental illness: In fact nobody knows more about mental illness than Donald Trump: ” . . . the people living [on the streets] are living in hell, too . . . although some of them have mental problems where they don’t even know they’re living that way; but perhaps they like living that way.” (Emphasis added)
No doubt! Just like those African slaves in the antebellum South were “happy with their situation,” as my innocently bigoted mother used to assure me.
–But not to worry. Donald Trump’s very large, very beautiful mind has not only identified the issue at the heart, as it were, of the homeless problem: bad cosmetics. He has fingered, as it were, the Masters of Evil responsible for the atrocity. “And this is the liberal establishment . . . When you look at some of these, they’re usually sanctuary cities, they’re run by very liberal people, and the states are run by very liberal people.”
–Donald Trump has clashed with these evil forces before–and sent them packing with a strategy that was stellar in its simplicity. “When I first became president, we had certain areas of Washington, D.C., where that was starting to happen. And I ended it very quickly; I said, ‘You can’t do that.'”
–And now Donald Trump is poised to expand that breathtaking solution into a national plan of action. As he told Tucker in the July 1 Fox News interview I have been drawing on here: “So, we’re looking at it very seriously. We may intercede. We may do something to get that whole thing cleaned up. It’s inappropriate [!]. Now, we have to take the people, and do something. We have to do something.”
Take what people where? And do what? one wonders with a shudder. The loyal Tucker Carlson didn’t ask, and Donald Trump didn’t say. But the national press, those damned “enemies of the people,” did not wait for the president’s second-favorite cliche, “You’ll see.” They checked some sources. Here are some of the headlines that resulted on Monday:
Trump pushing for major crackdown on homeless camps in California, with aides discussing moving residents to government-backed facilities (The Washington Post)
Trump Reportedly Wants to Destroy Homeless Camps in California. Officials Say He Doesn’t Have a Clue.(Vice)
Trump officials look to fix California homeless problem, state officials say back off (USA TODAY)
“My first reaction is that it felt like internment camps for people experiencing homelessness. The president doesn’t seem to have any grasp of the homeless crisis not only in California but around the country.”
It doesn’t take a very, very big brain to suss out Donald Trump’s entire, unabridged spectrum of thought about mental illness. (1) He does not know diddly-squat about the disease. (2) He doesn’t care diddly-squat about its victims. And (3) coming as they do from the lips of a self-styled “man of the people,” Donald Trump’s remarks are about as consummately elitist and plutocratic as you are ever likely to hear outside the Clarence Day Room of the Yale Club.
If you are homeless and mentally ill–hell, if you are homeless, period–you are to Donald Trump as a speck of acne on the Ivanka-like face of America.
You are an impediment; an inconvenience; an ugly flaw to be hidden under a cosmetic treatment. (The “cosmetic treatment” in this case seems to require “facilities.” Camps. And this much is true: Donald Trump does know a little about camps.)
But in a darkly intuitive way, Donald Trump may know what he is doing. Rounding up homeless m.i. victims and sweeping them away out of sight behind walls and locked doors would place his aims squarely on a plane with history’s first institution designed to, let us say, cosmeticize urban streets of “lunaticks,” “morons,” and “idiots”: the notorious Bedlam Asylum in London, which opened for business in the 13th century and brutalized generations of “patients” until it was closed in 1815.
Of course, that sort of barbarism is unthinkable in enlightened, humane, modern-day America. As unthinkable as separating small refugee children from their parents at our southern border and placing them in cages.
In case you thought I was making up or paraphrasing the Donald Trump quotes above, please carefully review the clip I posted above, from his July 1 interview with Tucker Carlson.
My next blog will focus on the impending public-policy threats–and promises–vis-a-vis the homeless population.
The leading Democratic candidates for president in 2020 have at long last agreed that abolishing this atrocity is an essential part of criminal-justice reform. It is up to us to hold them to their words.
When you hear or read the words “solitary confinement,” what images form in your mind?
A naughty inmate spending some time in a kind of “time out” space wearing a hang-dog expression?
A lonely prisoner in a tiny dark cell gazing at light from the slit of a window, with maybe half a bowl of dirty drinking water at his feet?
A mentally ill man who, after 112 consecutive days of solitary, has just severed his penis with a razor and flushed it down his cell’s toilet?
One of these things is not like the others.
All three images are rooted in the dark dominion of solitary confinement. Only one of them burns through the fog of euphemism and forces a reckoning with a terrible truth—in this case, one of the most perverse, destructive, and unnecessary varieties of soul-murder yet devised by man.
The topic “solitary confinement” has been raised lately (and gingerly, and fleetingly) by several candidates for the 2020 Democratic presidential nomination: raised as an agenda item in their calls for repairing the fissures in America’s criminal-justice system. (Criminal-justice reform is tightly intertwined with reform of our negligent systems of mental healthcare in America.)
The candidates have in turn been influenced—inspired—by the efforts of a bright new coalition of mental-health reform advocates: parents, mostly, spurred to action by the death or deep psychosis of a beloved child. Polite yet unyielding, ferociously informed, they amount to a neo-Dorothea Dix approach to getting justice for the dispossessed.
Iowa is their perfectly chosen beachhead. Not only does the state offer an early concentration of corndog-chewing candidates for them to buttonhole. Iowa City is the home of the turbo-charged advocacy team of Scott and Leslie Carpenter. Armed with an exhaustive five-point bill of particulars for mental healthcare reform compiled by the California advocate DeDe Moon Ranahan, the Carpenters essentially have brought the grass roots onto equal footing with the political elite—on this issue, at least.
But why shine the spotlight on solitary confinement when the justice reform agendas are crowded with so many other “big-ticket” demands? Cutting the U.S. prison population in half comes to mind, as do ending the notorious “cash bail” system that keeps poor young inmates locked up only because they can’t afford otherwise; or tightening up on police oversight; or legalizing marijuana; or abolishing private prisons.
Here is the reason: I sense that of all these important, difficult-to-achieve goals, the abolishing of solitary is among the easiest to bring up and then dismiss: the one most vulnerable to lip service.
And that would be a colossal shame. Stuffing sentient human beings into small, dark, fetid enclosures and leaving them there is about the worst thing it is possible to do to one’s fellow man. The American record for duration in solitary was held by a triple murderer named Thomas Silverstein, who died just last May at age 67. He’d spent more than half his life in isolation.
It borders on the impossible to find shared humanity with a monster like Silverstein. Yet traces of his humanity struggle to declare themselves like green shoots through cracked pavement. “It’s almost more humane to kill someone immediately than it is to intentionally bury a man alive,” he wrote. For one superb writer’s searching attempt, read Pete Earley’s masterful 1992 book, The Hot House: Life Inside Leavenworth Prison.
Or return for a moment to the lost soul who severed his penis with a razor. That would be the mentally ill inmate identified by his initials, J.I., a solitary inmate at Broward County Jail in Fort Lauderdale, Florida. On the night of September 2018, jail guards, alerted by prisoners’ shouting in a lockdown unit, rushed to the scene, where they beheld J.I., his hands and forearms bloody, who told them: “I have a real medical emergency. I just cut my penis off and flushed it down the toilet. I have no need for it anymore.”
J.I., who survived, had sat in solitary for 112 consecutive days. He’d been sent there for yelling at staff members. Records showed that guards had been negligent in monitoring his therapeutic needs. 1
Solitary is patently barbaric; bereft of any use (other than convenience and a lust for inflicting psychic pain). It is a legalized yet likely unconstitutional torture which, I have come to believe, is slightly more heinous even than the death penalty: its victims, while not dead, experience death as their own observers, existing in claustrophobic isolation and silence and darkness and decay, with no definable release awaiting them.
And so in order to tolerate it as public policy or even as a thought, some self-anesthetizing helps. (Those charged with actually imposing it on human beings presumably develop tougher psychic scar tissue.) “Solitary confinement” is a term useful for the necessary numbing: an abstraction, one of those “Orwellian” constructions that serve more to camouflage than to evoke their full, and usually terrifying implications.
That very abstraction is dangerous. It can too easily lead to evaporation.
This blog, then, is a plea to those presidential candidates who have made the abolition of solitary confinement a part of their criminal-justice reform demands: Do not let this happen. Honor the constituency that has materialized in Iowa and exists throughout the nation. Keep this issue alive.
In subsequent blogs I will trace the peculiar origins of solitary confinement in America, and will look into some of the lesser-known forms of its use—for example, as an instrument of control for juvenile inmates and even schoolchildren.
I will close this blog with a soaring testimony of hope, resilience, faith, and self-reclamation written by a former criminal and solitary inmate named Thomas Tarrants, and published in the August 19 edition of Christianity Today.2 It was sent to me by my friend, the literary scholar Harold K. Bush of St. Louis University. Thank you, amigo.
Two mobilizations of historic enlightened reform are abruptly converging in American politics and policy. Their aims are intertwined: to bulldoze and rebuild our blighted structures of criminal justice, and to reclaim our dispossessed mentally ill brothers and sisters from the hellscape of danger, pain, and early death that the blight of justice confers on them. And the economic drain that it exacts from all of us.
The symbiotic forces are (1) the elite tier of progressive candidates for the 2020 presidential election, and (2) the sleeves-up cadre of activists working at Ground Zero who toil because they daily confront serious mental illness up close, and witness its effects for what they are: cancers upon our societal health and sense of decency.
(The first of two parts)
At first glance, justice and mental-healthcare reform may seem but a marginal sliver of all the issues pressing in on America in the 2020 elections. (The physical salvation of the planet comes to mind, and abolishing the immigrant gulags at our southern border.)
This is a distorted, damaging perception, made more dangerous because the crisis is so easily concealed. It can sometimes seem as though insanity and incarceration are like two undersea predators, their tentacles wrapped around each other in a death-struggle of futility. The quality of courts, jails, and prisons has been weakened by years of tending people who should be under psychiatric care. The essentially helpless 11.2 million seriously mentally ill population in turn is vulnerable to suffocation in the folds of feckless court rulings and inhumane treatment behind bars, including deprivation of essential meds and the beckoning maw of solitary confinement (about which more—much more—later.) The one in five adults with less chronic afflictions—nearly 47 million—are within range of the tentacles as well.
Yet that perception, or lack of perception, prevails. It prevails because to open our eyes to the full truth of these abominations is to risk scorching the soul. “I’ll do what little I can in writing,” lamented the great James Agee in another, and again oddly similar context some 75 years ago. “Only it will be very little. I’m not capable of it; and if I were, you would not go near it at all. For if you did, you would hardly bear to live.”
Thus we banish the ghastly effects from our attention as “normal” Americans, until it is too late. The entwined crises strike quickly, and from nowhere, and spread ruin: in households and communities (black and poor ones especially), in the workplace, in public places, in our economic state, and in the less tangible spheres of our collective optimism, hope, and peace of mind.
America has needed an “intervention” for more than two centuries. Intervention seems, at last, to be on its way.
The most ambitious manifestos, in my unscientific reckoning, were issued within the last ten days by Senators Bernie Sanders and Elizabeth Warren and South Bend, Indiana Mayor Peter Buttigieg. Nearly as powerful were the earlier justice reform announcements of Cory Booker, Amy Klobuchar, and Julian Castro. Joe Biden and Kamala Harris submitted strong, if not notably comprehensive, reform ideas.
This ranking hierarchy is not as fixed as the tiers might imply. The eight plans are far more significant for their overlapping reform goals they stress than for their differences.
Slashing into federal prison glut is high on most lists. Sanders, Warren and Buttigieg unveiled proposals that would cut into mass-incarceration, each by roughly 50 percent: by reducing long sentences, ending the “cash bail” system that pauperizes poor families of those arrested, tightening up on police oversight, legalizing marijuana, and abolishing private prisons. Sanders’s document, at 6000 words, is by far the most minutely detailed. Warren would go after policies that “criminalize” homelessness, poverty, and mental health problems (critically, she has not elaborated on this last). Booker would scale back inmate numbers via a clemency program that would free many elderly inmates under the theory that criminals “age out” of their impulses to commit violent crimes. Klobuchar also embraces clemency via a restructured reform plan and would modify the “tough-on-crime” stances she held as a prosecutor in Minnesota.
Castro’s vision is likewise far-ranging, but he places special emphasis upon overhauling violent and clueless behavior of policemen. He wants to curb the use of force, end stop-and-frisk, holding police more accountable for misconduct, and restoring trust among police and the communities they are sworn to protect.
As for Biden and Harris, their reform plans are similarly comprehensive and replicate the bold ideas of their rivals as listed above. Both candidates—and to some extent Klobuchar as well—are preoccupied with freeing themselves from the taint of the “tough-on-crime” stances that they adopted in the mid-1990s.
That is my personal survey, unfairly truncated perhaps, of the generally ground-breaking flurry of criminal-justice reform ideas released by eight of the leading progressive presidential candidates.
An obvious but important caveat: none of these audacious ideas will tap-dance its way into law or policy should its sponsor get elected. (The proto-autocrat decrees of our current incumbent might lull some into that assumption.) A new chief executive will need to inspire the House and Senate to a pitch of pro-active fervor not seen since the First Hundred Days of Franklin D. Roosevelt’s presidency when the New Deal took form in a blizzard of “relief, recovery, and reform.” For our present stumbling and divided Congress to suddenly sprout capes, masks, and flippers and get busy cleaning out the present rot may seem a stretch. Yet things can happen quickly, as the last midterms showed, and a whiff of activism does linger in the air.
With all this in mind, let us turn to the symbiotic manifesto that has arisen from those ordinary heroes at Ground Zero: “Grassroots 2020: A 5-Part Plan for Mental Illness SMI.”
Grassroots: 2020 has been personally distributed to visiting Democratic candidates or mailed to their offices by Leslie and Scott Carpenter of Council Bluffs, Iowa. The Carpenters’ tireless work has helped join the reformist trajectories of these politicians and the people.
I lay it out below with minimal editing, in summary form. You will note that each part of the plan delineates action that a president can undertake, sometimes independently of Congress. And unlike the candidates’ ideas above, Grassroots: 2020 addresses justice-reform issues (incarceration-trimming, for example) only incidentally. It focuses on existing rules, many of them arcane to the non-specialist, that nonetheless have caused decades of frustration and despair for those struggling to reclaim their afflicted loved ones from a decayed system:
A FIVE-PART PLAN TO ADDRESS SERIOUS MENTAL ILLNESS (SMI) 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:
Re-classification will unlock more research funding and help eliminate discrimination in treatment, insurance reimbursement, and the perception of SMI as a “behavioral” condition. SMI is a human rights issue. The National Institutes of Mental Health ranks SMI among the top 15 causes of disability worldwide with an average lifespan reduction of 28 years.
• Create a cabinet position exclusively focused on SMI. • Push for Congressional appropriations to include schizophrenia in a CDC2 program that collects data on the prevalence and risk factors of neurological conditions in the U.S. population.
2. REFORM THE HEALTH INSURANCE PORTABILITY AND ACCOUNTABILITY ACT (HIPAA)3
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.
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:
The Medicaid IMD Exclusion prohibits Medicaid payments to states for those receiving psychiatric care in facilities with more than 16 beds for those in the 21-65 age group. This demographic represents the majority of SMI cases. Repeal of the IMD Exclusion will increase the availability of acute care, inpatient psychiatric beds. The IMD exclusion not only discriminates against those suffering from neurological brain disorders, it’s a leading cause of our national psychiatric hospital bed shortage.
• Work with legislators to repeal the IMD exclusion.
4. PROVIDE A FULL CONTINUUM OF CARE FOR THOSE WITH SMI
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. Providing a continuum of care reduces: incarcerations, emergency rooms visits, homelessness, and death. A continuum of care provides life-time management that permits a patient to move without penalty from one level of care to another as needed.
• 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.
• 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.
Returning to the candidates’ manifestos, I have omitted two demands that show up in most of them, yet are given no more than lip-service by none except Bernie Sanders: abolishing capital punishment and solitary confinement. Both are urgent. Deciding which is the most urgent depends, I guess, upon the morbid calculation of whether continued existence in the “hole,” with its barbaric history of destroying human personality, is worth the torture. I have felt my way to an agonizing decision. In my next blog I will urge the candidates to meditate on solitary confinement for exactly what it is, and to treat it as primary target for abolishment.
Well, not “no one.” Still, the levels of ignorance, too often coupled with hostility or sheer meanness, remain unacceptably high in this country. We in what I’ve called “the sub-nation” must never assume that the people we encounter will have even a working knowledge of severe mental illness: not a relative, a next-door neighbor, a caregiver, a police officer, a stranger in the park or on the street–not even the President of the United States.
Below are three recent bits of evidence that prove my point. The first is the text of a Facebook post by Scott Carpenter, a leading reform advocate based in Iowa.
Scott and his wife Leslie, who have seen a family member stricken, are among the strongest voices in America for what needs to be done. Yet not even they are immune from incidents of unexpected and bewildering hatefulness:
An elderly man walks [up to me] and says that ‘the problem isn’t about guns. It’s about crazy people.’
Leslie (against my advice to not engage) indicates that we have a son who has a serious mental illness and that he should come listen to he comments in an hour or so. He declined.
Then he said, ‘your son and all of the crazy people should be taken out in a field and shot. That way they could be useful as fertilizer’.
Please don’t ever think that a day of activism is easy.
Scott J. Carpenter”
When you have caught your breath from that, please follow the two links below.
The first link is to some remarks that President Trump made to campaign workers before a political rally in New Hampshire, in which he continues his strange and uninformed characterization of the mentally ill as, collectively, a horde of depraved killers that must be rounded up and swept into asylums. This and other tirades show that Trump knows nothing about insanity and cares less: his real agenda is deflecting attention from the ongoing mass-shooting crisis: The article leaves no doubt about this:
“Trump said many other Republican leaders and the public don’t want ‘insane people, dangerous people, bad people’ owning guns.”
“Words matter, Mr. President. ‘These people’ are our friends, neighbors, children, spouses. They’re not ‘monsters,’ ‘the mentally ill’ or ‘crazy people’ – they’re us. Talking about reinstitutionalization only further marginalizes and isolates the one in five people with mental illness. Instead, we need to be talking about the power of early treatment and effective intervention to change lives.”
These are but a couple of examples of incidents and attitudes that repeat themselves daily in America. They underscore the urgency of the seminal five-part manifesto organized by advocate Dede Ranahan and made widely available online and to presidential candidates last week. (Ranahan’s mentally ill son Patrick died in an institution in 2014.) The lessons in Ranahan’s great document are many and vital.
What I have outlined above constitutes just one. It is at once tiresomely repetitive and freshly urgent: We can never assume that any given individual–not even our Chief Executive–knows much about crazy people. And we must work relentlessly to change that.
P.S. Mental healthcare advocates Scott and Leslie Carpenter discussed the challenges they experienced when seeking proper care for their son Patrick during an interview withThe De Moines Register. What they share is both heartbreaking and informative. I encourage you to take a few moments to watch their interviews below to better understand how mental healthcare policies and procedures often fail to provide effective or compassionate care to the mentally ill. If you would like to share your own experiences of mental healthcare for yourself or a loved one, I invite you to comment below.
Stories from the front lines of Iowa’s mental health crisis
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.”
“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.