Catherine J. Rippee-Hanson recently completed this breathtaking digital pen drawing of her brother, the late James Mark Rippee, taken from a photograph.
You know Mark Rippee’s story if you have followed this blog or read any of the media stories about him. For years, this mentally ill, blind, and homeless man clung to a brutal existence on the streets of Vacaville, California. County and state services, not bound by any hard and fast rules, left him to die there, and he did.
Catherine Rippee-Hanson’s brilliant, damning creation deserves to be enshrined as the prevailing image of American society’s degree of concern for its “crazy people.”
If you retain only one image of those dispossessed by our systems of care for our most helpless citizens, let it be this one.
You can find Debbi Anderson’s wrenching cry from the heart farther down this post. I have left the two parts exactly as I found them on a private Facebook discussion site. They are long and messy. That’s the thing about mental-illness narratives. They don’t clean up well. They shouldn’t clean up well. “Polishing” them, “editing them down,” “trimming” out “wordiness,” “sprucing up” bad diction—these are forms of murder within this genre. This kind of sanitizing leaches out the violated humanity in the original words. It distills the raw passion down to journalese.
And that is a core problem with writing about mental-health issues, whether quoting from a frantic mother or composing expository prose about the nature of brain disease: it comes out either too long or too sterile.
Here I am going to risk both the former and the latter. I’m going to give you the context of Debbi’s two messages. (There is some repetition.) And then I am going to turn things over to Debbi, who has given me her permission. In a later post, I will examine some of the public-policy roadblocks to relief for her and her stricken son.
Set aside some time. But please try to read every word of Debbi’s stream-of-consciousness burst of despair. At a minimum, it will (re-)introduce you to a world that most people shrink from even thinking about. If a miracle occurs, it might infuriate you into joining the ranks of the reform advocates.
Debbi Anderson is a working-class woman who lives in Wichita, Kansas. Her son Devin has spent 18 of his 36 years in a fog of severe schizophrenia, and the voices in his head have driven him again and again to the streets (see the “missing” poster link below), to addiction, to jail, and to at least ten suicide attempts: “dangerous” behavior. Dangerous “to himself and others,” as the bloodless bureaucratic bromide has it.
Debbie, whose photographs show a blonde woman with large, penetrating eyes, has stood with her son all this time, tortured with worry as he has shuttled in and out of “care centers”—another bloodless bromide. (Some work well; others—well, read Debbi.) She has divorced his father and remarried, to a man who means well for Devin yet understandably lacks a clue as to how to maintain a bond of trust with him.
Things have hit rock bottom. Devin has been evicted from his latest hovel, a “rat drug infested apartment” in Debbi’s description, that his latest caseworker found for him. Why? Because he is uncontrollable. He is uncontrollable because the voices in his head ordered him to go off the stabilizing medication that once worked for him. The bloodless bureaucratic bromide-term for this condition is “anosognosia”—lack of insight. The bedraggled bailiwicks of American mental healthcare are suffocated under bureaucratic jargon and acronyms. And this is probably one big reason that no one cares about crazy people.
Here is Debbi:
I have attempted to post something about three times on here and every time I deleted it! I have ADHD, so if I jump around on here you’ll know why LOL I feel like you need to know that before you read this!
My son was diagnosed with schizophrenia at the age of 18 is 36 now most of my family was worried about what the neighbors would think! My mother was extremely ￼narcissistic ￼ so I know I get no support there! It has been 18 ￼years of hell! he has a severe case! When he was diagnosed I was relieved in a sense I could finally put a name to what was attacking my son!! But I went from saving him from himself to having a gun pulled on me trying to get him out of a motel I was young and stupid back then that isn’t gonna happen again! but phone calls at night needing a ride because got beat up dont know how many times going out on the streets panhandling staying in the worst dirt bag place you could find. He had at least 10 suicide attempts when he goes off his medication the voices just torture him! Constantly went missing here in Wichita Kansas and then got so delusional and manic he thought that $.50 the rapper stole his lyrics He tried three times to make it to California and the third time’s a charm! Made it to California went missing for over a year.
I searched every day it was hell! I was not sleeping throwing up malnutrition losing my hair (I’m sure some of you have been thru this!) After the year was up my mind was taking over like it was trying to prepare me for that awful phone call or knock on the door we all dread! And then a phone call came in, from a hospital in south-central LA it was my son finally someone called me and asked me if I had a son named DEVIN! How he ever survived that i’ll never understand it had to be a God thing! He wanted to stay there! So in order for me to get the help that he so desperately needed I had to give up my rights so we could be a ward of California by the way one of the hardest decisions I ever had to make doing that! He started the revolving door in California just like he did here in Wichita Hospital group home run away hospital group home you know the routine for years and until he met a doctor that really helped him! Who would’ve thought an old-school drug like haladol would help him so much one shot monthly XR! So he’s in the same group home for quite a while he started making phone calls to me back home in Kansas and he sounded more like MY SON!! than ever since the day he was diagnosed!!! Still had attitude problems but nothing like it used to be not going out on the streets and doing God knows what and doing things that I wish I never new about! He was somewhat stable so he decided he wanted to come back home! Everybody else was thrilled I was scared don’t get me wrong I miss him so much! But the thought of having him back here in my face and going through hell again I wanted to believe that everything was gonna be OK so desperately! deep down inside I knew it wouldn’t be! I have been with an amazing man going on eight years he is my support system he is my world he just could not understand why I wasn’t so excited I felt guilty don’t get me wrong I want to see him so bad I really missed him it had been over seven years since I saw my son! so I set up a meeting with his group home and we had a plan the team met and we had an exit strategy I laid down my boundaries and my rules you know nothing too terrible no drinking in my house and no drugging and you will let me know where you’re at! Because I have worried enough through the years to last one person 20 lifetimes! But the first several months went really well I’ve bonded with my son since the first time he’s been diagnosed we were getting close he still had some issues but like I said nothing like before! Then when he got comfortable back home he started getting Like he had ants in his pants!
When ever he had money in his pocket the streets with Would call him! countless nights talking him out of using drugs the voices telling him to stop taking his shot then he meets a girl that’s an alcoholic and all goes downhill from there starts taking off I have no clue where is that then he decided to ask his case worker for an apartment and they put him in the most rat drug infested apartment they could find he got evicted because he can’t even take care of himself he’s so delusional because he’s been off of his shot for quite some time now which should’ve already been in the case file at the mental health place that he goes through I know there’s like a huge file on him but nobody bothers to look at that it’s already been proven he can’t live alone he can’t shower now he doesn’t even know he needs to! he barely eats! out on the streets living homeless panhandling for money and doing other things on the streets I don’t even want to talk about they are so horrible! This is what happens when the voices told MY SON not to take his monthly shot The mental health services here has told me they’re going to quit him if he doesn’t make contact with them and work on his goals. My son is out of his mind right now! he doesn’t even believe I’m his mother! How can an irrational person do what their supposed to do?!
I need help before the suicide attempts start again! By the way I am off his release so that makes it twice as hard! I know that we all have different issues and that we’re all on different levels my son is on an extreme level right now he’s very sick! He puts himself in the most dangerous situation he can find! I call that a danger to yourself I still can’t get him hospitalized! He’s been back for a year and a half and stayed on his medication for probably half the year since he came back and he’s only been hospitalized twice and never got to stay they sent him home and he was still delusional well they didn’t send him home they dumped him off at a shelter!! The system is so broken they have nothing to protect our severely mentally ill!!
Yes! I was on the website today advocates for the mentally ill on Facebook and I read the blog with the sister that had a mentally ill brother and when I read it it was like I was reading about my sons life! I posted on there several times about my son and I think you even commented on one of the posts my son is 36 he was diagnosed with severe schizophrenia When he barely turned 18 so I have been doing with this hell for 18 years! When I read that she said she’s been doing this for 33 years i was like oh my god that’s gonna be me! I have been told has been the worst case of voices a doctor in California told me that several years ago! I’m from Wichita Kansas and my son was delusional and off meds several years ago thought the rapper 50cents stole his lyrics, so he tried three times to make it to California It scares me to think what he would’ve done if he did find him he was missing for over a year I searched every day he was found over a year later in south-central LA how he made it that long alive I will never know!! so anyway he decided he wanted to stay in California which they have a better mental health system than Kansas and more funding for the mentally ill so he stayed there a few years and decided he wanted to come back home because he was stable finally found medication that would work Every month he is supposed to take a shot of haldol XR it is The most lucid I have ever seen my son! But eventually those damn take over and they tell him not to take the medication! We have done revolving door run away , state hospital group home Rinse and repeat! you know throw in a couple jail times in there! I have spent his entire life practically saving him from himself I have had a gun pulled at my head shot at trying to get him out of a dangerous situation with gang members! Did that when was when I was young and stupid LOL that won’t happen again! I’m just blown away he got that far Wichita Kansas to south-central LA On Greyhound bus But he was manic and full of energy as he’s gotten older his illness so much worse! Attempted Suicide at least 10 times he gets off his meds for a long period of time voices are going to take over and literally torture him he will shoot anything in his veins there any kind of drug because he’s convinced it makes the voices go away when in reality it makes it amplified! He has a CaseWorker I’m not on any release he refuses to sign it! Years ago I wouldn’t be able to get him talked into going to the hospital as he’s gotten older he acts like I’m not his mom and he literally tells me you’re not my mom I don’t know who you are he doesn’t know who I am he’s so far gone he told my daughter the other day several months ago that he was an alien and he can’t ever take a shirt off because he has a hoses all over his body! He says he doesn’t even know his name he said he is black when reality he’s white The Services here we have for him are horrible They been just been letting him fend for himself he has met criteria for a danger to himself several times over but here it’s not actually trying to commit suicide they don’t think it’s a danger to himself when in reality he’s doing a slow methodical suicide he doesn’t care if he lives or dies! If he was walking down the street and there was a bunch of mean guys with guns and on the other side it was a bunch of nuns wanting to help him he would go over to the bad guys with them every time! Straight now he doesn’t shower and clean he was living in filth downstairs to meet her but he left the door unlocked one day and it was ungodly the mental health passivity here in Kansas has hardly any funding so they find a cheap drug infested apartment the last place in today well he got evicted there and now he’s on the streets hustling money running around with murderers prostitutes and drug dealers They all take advantage of him he won’t let any of us near him he runs from a course I am like the devil because I’m the one that wants to get him help when you’re that ill anyone who wants to get him help is the enemy! It’s heartbreaking he gets worse every day anyway there’s so much more but I’ll stop there I know it’s rambling and confusing I’m sorry also that’s why I want to him on the shot because he wouldn’t take his regular tablets but now he won’t even show up to get a shot it’s time for his shot this month again he has not been on it for four or 5 months The voices in his head Literally torture him! If he stays off his meds for too long he starts contemplating suicide! it’s been 18 years of hell! But I’ll never give up! The mental health care facility here where his caseworker is told me yesterday that if my son doesn’t start taking his medication and working towards his goals and if he doesn’t stop missing all his appointments they were going to take him ofc there caseload and he will no longer be a part of their agency they are worried about liability because he’s out there on the streets if something happened! unbelievable! I am so upset about that it seems like the more severe they get the worse they’re treated legally community wise and everything else! No so he can’t think rational how would he even know to go to his appointments he doesn’t even think I’m his mom! So tired of everyone thinking that they’re capable of talking or thinking rationally at this point! Thank you again for letting me share it’s good to get the stuff out of me I cry a lot I feel so defeated!
Will you step up as the standard-bearer for the mentally ill?
Full disclosure: I have struggled with this blog post for days: post it or throw it away? Revise it one more time so that it reads as Beltway-savvy, or put on my Mister Smith hat and hope it will ignite a 1939 Hollywood moment? Decide to not intrude into the life-choices of an honorable private woman who made it clear recently that she wants to remain private, or say the hell with it and make the intrusion anyway?
Hell with it. Here goes:
On August 23rd of last year, America lost one of the two or three greatest champions of mental healthcare reform since Dorothea Dix. The vast sub-nation of the afflicted, their families, and their ardent yet scattered and over-burdened advocates is seeking a replacement: someone who can help unify this nationwide archipelago of sufferers into a single movement with a coherent voice.
I believe that Ashley Biden, the new President’s daughter, is the person most graced by fate to advance our mission. And I will tell you why: in addition to her experience and expertise in mental health issues, Ms. Biden would embody an influential link to policymakers that the afflicted and their caretakers have yearned for roughly since the founding of the Bedlam Asylum in 1377.
I can already hear the screams of “nepotism!” from the President’s political foes. (At the same time, I’m mindful that some of the most stalwart friends of the mentally ill have been Republicans.)
As Elizabeth Warren used to say, I have a plan for that: make Ms. Biden an unpaid White House staff advisor specializing in the interests of the mentally ill.
(Ashley, is there anything else I can do to enhance your life before I sign off??)
Let me give a thumbnail sketch of the man whose death has created such a vacuum:
Dj Jaffe was 65 when cancer took him from us. Most Americans had never heard of him. Yet within the archipelago, he was a superhero. He’d walked away from a cushy career in advertising to take up the cause when his sister-in-law developed schizophrenia. He understood and worked with Congress, the courts, community health centers, and the county jail, having mastered the complexities of schizophrenia and its related chronic predators upon the human brain. In 2011 he founded the indispensable Mental Illness Policy Org., a colossus of links to data, information, helpful sources, and policymakers. He was a co-founder of the Treatment Advocacy Center along with his own personal hero, the pioneering E. Fuller Torrey. His nonprofit book, Insane Consequences: How the Mental Health Industry Fails the Mentally Ill, is the single most comprehensive manual on the subject in our time.
Dj Jaffe’s passing has left an unacceptable void of wisdom, energy, and passion at the center of our efforts to reclaim the grievously broken systems of mental healthcare in America. There are dozens of men and women who would do credit to my late friend’s legacy. And then there is Ashley Biden.
As I say, Ms. Biden has made it clear that she dislikes “the spotlight,” and bravo for that. Yet her role as an advisor to her father, or perhaps as director of a new foundation, need not entail being in the spotlight so much as seizing the spotlight. And turning it around upon a shadow-enshrouded system that to this day abuses insane people with barbaric neglect and cruelty reminiscent of the Middle Ages.
With scattered exceptions, the mental-illness archipelago historically has been starved of government access. And when any level of government intervenes, it usually leaves things worse than they were. (I write this as a believer in active government.)
Think of “deinstitutionalization,” the sixty-year-old policy disaster that set off the national homeless calamity that expands to this day. Think of county jails as our new, dysfunctional mental hospitals. Think of mind-destroying solitary confinement, a useless torture practice that too often serves as a convenient storage-box for possibly prodromal juveniles. Think of un-convicted juveniles, untreated afflicted kids among them, waiting behind bars, often for weeks and months, for their trials. Think of untrained or uncaring police killing psychotic victims on the streets.
The crises and atrocities cited above are known to most people with a passing interest in the squalid fate of “crazy people” in America. The wish-list below will seem arcane to lay readers; yet it is packed with urgent, unaddressed problems that stunt and shorten the lives of the chronically mental ill, spread a widening cone of misery through their families and communities, and diminish the financial—and moral—health of the nation.
I’m indebted for this list to Leslie Carpenter of Iowa City, who with her husband Scott forms a tireless advocacy duo in America. Here it is:
–End the outdated, discriminatory federal rule known as the IMD Exclusion. This will increase the number of acute-care and long-term beds.
–Increase reimbursement rates for mental health professionals, direct care staff and facilities. This will help with recruitment, retention and quality of staff caring for people with serious mental illness (SMI).
–Increase funds for continued research for schizophrenia and related brain disorders.
–Fund and expand Assisted Outpatient Treatment Programs, along with Civil and Criminal Mental Health Courts.
–Expand funding for Certified Community Behavioral Health Centers in every state in the country.
–Stop wasting money on unproductive anti-stigma campaigns and. Use those funds to pay for the treatment of the most seriously ill, and the stigma will go away.
–Stop funding just more housing. Allow HUD subsidized funding for residential care facilities, group homes and facilities all along the continuum of care for people living with SMI and substance use disorders. Funded housing, tied with assisted outpatient treatment (AOT) programs, will allow the housing of people who don’t know they are sick, and keep them in treatment via outpatient civil commitments for treatment.
–Stop shutting down Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI) if someone has to be hospitalized for 30 days or more. Shutting down the ability to pay rent is a major cause of homelessness among the chronic mentally ill.
–Create loan forgiveness incentives for mental health professionals practicing in rural locations.
–Fund medical schools to increase enrollment for psychiatrists and other mental health professional programs including nurse practitioners, physician assistants and psychologists.
Every one of these proposals requires intense, coordinated governmental action. As of today, there is no governmental coordinator. Not even Dj Jaffe had such power. This thin and secretly failing hero drew upon his extraordinary passion, his vast self-education in this complex cluster of subjects, and his gift for eloquence in the media, in testimony, and in his book.
The dispossessed mentally ill people among us cry out for a figure to replace Jaffe, and perhaps even surpass his legacy. Given Ashley Biden’s training, intelligence, commitment to the cause of mental health, and principled access to the (recently besmirched) corridors of congressional power, I believe that she could be this figure—a catalyst for reclamation.
We live in a fragile national moment, a moment saturated with promise and with menace. On the hopeful side, I marvel at the brisk accomplishments of President Biden’s first weeks in office, and I hear an old trumpet sounding, and I can almost envision a second New Frontier. On the dark side linger the shock-images and aural bedlam of the Capitol insurrection and the miasma of the impeachment trial, with portents of worse to come. And I wonder whether collective psychosis—madness—is our new pandemic.
It will take every person of good will to steer our future toward the light. Mental illness is just one item in a crushing agenda; yet it looms over us all, a scourge of mostly unfathomed proportions. (How far have some of us drifted into collective psychosis? Is there momentum in this direction?) A voice of informed influence near the apex of our government would be a godsend. The archipelago needs you, Ashley Biden.
. . . again. And now the real work of his loved ones, the work of keeping him alive on the Vacaville streets through the Covid-thick winter, commences. Again. Because no city or county or stage agency cares. Still.
Pardon the sarcasm. I am steaming. We’re still in Bedlam. The mad, including afflicted children, are still getting gunned down by cops who are clueless, untrained, or worse. Linden Cameron of Salt Lake City, riddled with police bullets on Friday for the crime of running in fear and confusion, has survived, so far. Yet our severely brain-damaged mental healthcare system–including jails, prisons, and vicious trigger-happy cops–remains mired in its historic ignorance, incompetence and, yes, cruelty.
We look, we pray, to our political leaders to at least keep “crazy people” from the worst of it; from incidents like this. A little kid, dammit! Instead–irony of ironies–the current political campaign season, as deranged in its way as are our systems of care–has managed only to push this urgent issue further into the dark margins.
This despite the unflagging work of reform advocates such as Leslie and Scott Carpenter, who pled our community’s case to every Democratic presidential candidate who passed through Iowa this summer. And the sisters C.J. Hanson and Linda Rippee, who have battled across decades to secure help for their drastically damaged street-wandering brother Mark, only to be met with stony indifference from pols at the municipal, county and state levels in California. You may find their story scattered through several entries in this blog.
And many, many others.
To essentially no avail.
It just seems that no one cares about crazy people.
I sit here at my computer screen and I think: 13-year-old. Unarmed. In a mental crisis. His mother calls the police. And a wolfpack of cops shows up and empties several rounds of bullets into his small young body. Intestines. Bladder. Shoulder. Ankles.
Bob Dylan’s lyric in “Oxford Town,” released fifty-eight years ago, remains the definitive commentary on the subject:
I wrote my fingers to the bone on the U.S. criminal justice abyss in my book and after it was published. Nothing changed, and it sickened and sickens me. Congratulations on this book, Christine Montross. Thank you for bringing it to my attention, Gail Freedman.
When Christine Montross approached the end of her residency program in psychiatry, she met with a mentor for help evaluating two attractive job opportunities. Ignoring both options, her adviser raised the possibility of a third: “What about the prisons?” Montross balked at this unsolicited, unwanted suggestion. She deemed it an imprudent, even absurd use of her training, given the nation’s dearth of psychiatrists and broad demand for mental-health services. “Why would I want to work in the prisons?” Montross wondered. “Why devote my time and attention to people who had committed crimes when there were so many innocent people who needed care?”
Senator Sanders, as I indicated in my previous blog, I have admired and supported your political career. And as I went on to say, I believe you are dead wrong, dangerously wrong, on three foundational elements of your mental healthcare platform.
These elements involve (1) your belief that treatment for people in psychosis must be voluntary; (2) your opposition to reforms that would alleviate the severe crisis in available beds for such victims; and (3) your refusal to support relief from the oppressive “HIPAA” restrictions on the release of information, to families, concerning their afflicted loved ones’ medical conditions and plans for continued treatment. I have explained my reasons for objecting to your positions on these issues in my February 14 blog.
Now comes the corroborating voice of Susan Inman, an eloquent advocate, and the mother of a daughter suffering from schizophrenia. Inman is the author of the best-selling, highly regarded memoir, After Her Brain Broke.
Here is what Susan Inman–writing out of direct, harrowing experience–has to say about the destructiveness that is perpetuated by your continuing embrace of these outmoded and logically preposterous impediments to reclamation. Her essay first appeared on the website Mind You: Reflections on Mental Illness, Mental Health and Life. Please give some serious thought to the wishes of those of us who have formed our opinions from direct experience instead of sterile ideology.
Secrecy, official neglect, pain, petty violence and thievery have been the daily portion for Mark Rippee during his ghastly, 13-year ordeal of homelessness on the streets of Vacaville, California.
Thanks to the heroic determination of his sisters Catherine Henson and Linda Rippee, a groundswell of activism is at last forming in his defense. Please, no matter what state you live in, sign and return this petition below to help bring a measure of humanity to this terribly violated man!
My brother, James Mark Rippee, who is blind, brain-damaged from a traumatic brain injury (TBI), physically disabled, and has Schizophrenia and Anosognosia. (Lack of Insight to his own serious mental illness.) He has been homeless for 13 years living on the streets of Solano County in California.
I previously authored a petition two years ago in support of AB 1971 in California – legislation that was pulled by the authors after I garnered 82,000 signatures through my petition which was hosted by Care2, due to “poison pill” amendments forced into the Bill to change the definition of “Gravely Disabled” to include “lack of capacity and medical need” as a criteria for involuntary treatment and placement or LPS Conservatorship.
I had made my brother the face of that bill. After continuing our efforts to get him help, services, treatment or placement and failing with our County of Solano in California who have been negligent in their duty to start an LPS Conservatorship Investigation and process, and denial of participation with Laura’s Law, and even denial of Mental Health Services!
We continued to speak at Solano County Board of Supervisors’ meetings and inform all County officials, Health & Human Services, Social Services including Adult Protective Services that he was in danger – in particular to being struck by a vehicle or causing an accident because he literally has no eyes.
In September of 2019, he once again fell into traffic and was struck by a car. Because he has anosognosia and is not of sound mind, when EMTs were called to the scene – he denied needing help and was left on the sidewalk -injured, in pain and crying.
Eventually, he was found by our family two weeks later with life-threatening injuries sustained in that accident. He had emergency brain surgery and was in the hospital for 3 weeks. Although clearly delusional the psychiatrists there refused to declare him with diminished capacity which would have resulted in a 51/50 hold. Even though they would not place a hold on him for his own protection – they did continue to inject him throughout his stay with antipsychotic medications.
Upon their decision to release him and after much protest and contact from the community and mental health advocates from across the nation – accusing them of “patient-dumping” – they decided to transfer him to a Senior Board & Care home (he is not yet a senior) for 30 days under the guise of a “Safe-Discharge Plan.”
Because the Board & Care home was ill-equipped to deal with a person with serious mental illness and his delusional behavior even though Kaiser continued prescribing him antipsychotic medications — they opened the front door and let a blind, severely and gravely disabled man walk away from the facility in an unfamiliar city. Our family lost contact with him as he fled from his delusions to another city for a month.
Through many attempts to get the County to take appropriate action for him and our family – the County of Solano has continued to fail– at this point clearly negligently and with intent to discriminate.
On February 12, 2020, James Mark Rippee was again struck by a vehicle – this time so critically injured that it will take months for him to recover – if he does. He is in Critical Condition with a Fractured Skull & Brain Bleed, Facial Lacerations & Bruises covering his body, Lung Contusions, a severely Dislocated Shoulder, a Shattered Elbow, Removal of the Metal Rod running the entire length of his leg which had been holding his leg together for 34 years and was bent in the accident, a shattered Tibia, and more. It is expected that many more surgeries will be needed and months in the hospital.
At the time of this writing, the hospital is once again denying that he has diminished capacity and has taken no action to allow family members any rights to know about the details of his condition (HIPAA) and even though my brother is incoherent and sedated – they will not allow family members who love him and know what is best for him to make any medical decisions and are ignoring their duty to declare him with diminished capacity in the face of their previous records on him from 4 months ago.
While we hold the County of Solano and many officials, departments and agencies responsible for not preventing this second tragedy that we told them would happen – We also demand that the State of California and in particular – Governor, Gavin Newsom – whom we have previously attempted to contact – PAY ATTENTION TO THIS SITUATION and ACT accordingly!
Our family has contacted many, many politicians at the County, State, and Federal levels for several years! We have testified at the California State Capitol for several proposed legislation regarding Grave Disability, Conservatorship, and pleaded with all to help our family.
We DEMAND attention from Governor Gavin Newsom, who claims to hold in such regard the need to help the Seriously Mentally Ill and the Homeless! NOW!
Bernie, you represent me in Congress. I am a constituent of yours who has voted for you regularly. We know one another a little. (In Vermont, everybody knows one another a little.) I have followed your political career with admiration. I have defended you against my Democrat and progressive friends who insist that you are prohibitively doctrinaire, headstrong, and abrasive/dismissive in conversation. (Who, knowing you, could possibly believe these things?!)
I applaud your decades of consistency in holding large corporations to account for their greed, deceptions, and perversions of economic and social justice. I feel inspired by your support of the American worker even as many American workers, including many in your home state, are blinded to your support by your self-identification as a “socialist.”
And so, when I make the urgent request that I am about to make, I hope you will not reject it out of hand as the trolling of a political opponent. I’m asking you to reconsider your stands on three critical elements of U.S. mental health-care policy. Singly and as a group, these elements in their present form contribute to the ongoing national crisis in the care of our most helpless citizens.
The three involve the so-called IMD exclusion, the HIPAA rules, and controversial laws surrounding the civil commitment of people in psychotic states.
Your problematic proposals are as follows: to defend the oppressive “IMD exclusion” that disallows Medicaid funding for those hospitalized with mental illness; to maintain the so-called HIPAA rule; and to keep in place the highly problematic civil commitment laws (laws that bar hospitalization of a person in a psychotic episode, unless it’s demonstrated that person is a danger to self or others).
Senator, each of these policies has caused untold and needless frustration, and often financial loss, to sufferers and their families. Each of the reform proposals you oppose amounts to a common-sense solution. Yet each, and all, of these laws are defended by lobbying groups within the anti-psychiatry community and by mental-illness deniers, despite breakthroughs in neuroscience and brain-scan technology dating to the 1980s.
To examine each of them:
The IMD (Institutions for Mental Diseases) exclusion bars federal Medicaid financing for patients in psychiatric facilities with more than sixteen beds. It was enacted in 1965, the new Bronze Age of mental-health care, when large, decrepit, and often brutally run asylums brooded over the landscape. In 2020, IMD is a destructive artifact that stands athwart the enlightened trend toward smaller, efficient community-based care centers with professionalized staffs.
Case in point: The venerable Brattleboro Retreat—Vermont’s largest psychiatric hospital—emblemizes the creaking policy’s noxious legacy: in January, the private nonprofit Retreat warned that a funding crisis might lead to its shutting down. Not until crisis negotiations a few weeks later between the governor and Vermont’s Agency of Human Services did the state grudgingly consent to cough up $2 million in emergency funds to keep the Retreat going. Its future remains precarious.
Meanwhile, Vermont’s shortage of acute care beds for the mentally ill has grown even more dire. In the words of the reform advocate DJ Jaffe, “It is hard for Senator Sanders to argue in favor of ‘healthcare for all’ while embracing the federally sanctioned discrimination embedded in Medicaid that is causing hospital beds for the seriously mentally ill to close.”
The cumbersome HIPAA is similarly a counter-productive policy that calls for scrapping, not defending. The Health Insurance Portability and AccountabilityAct was signed in 1996 to accomplish many things, most notably, to restrict the personal and medical data of hospital patients from scrutiny by insurance companies, employers, other care providers—and also from the patients’ family members.
The unintended consequences of HIPAA thrust mental patients’ families, into an abyss of anxiety and frustration. Denied any scrap of information—Is our child resting? Screaming? Lashing out at doctors? Improperly medicated? How can we help him/her?—parents can only rage against the curse-upon-curse that HIPAA imposes. My wife and I experienced this torture when our son Kevin was hospitalized with schizophrenia. We wanted desperately to know what medications he was being given. We had seen the horrifying effects on him from meds that did not suit his biological system and wanted to share what we knew.
Kevin was eventually released from the hospital. He took his life during an episode of psychosis a week before his twenty-first birthday in 2005.
Surely the HIPAA laws can at least be modified to include a sufferer’s loved ones in the information loop without releasing sensitive data to all and sundry. Yet, Senator Sanders, you have stated your opposition to any amendments whatsoever. Please—and I ask on behalf of desperate parents everywhere—please reconsider.
As for your intention to stand by the existing civil commitment laws: These laws changed the history of confronting psychotic behavior by raising, for the first time, legal obstacles to what had been intended as purely medical decisions. Most of these civil commitment laws were enacted by states in the 1970s, a period of passionate civil-rights activism and also fervent skepticism about the very existence of mental illness. The laws have bedeviled advocates and judges ever since. They address questions that have no clear answers, yet can determine the life or death of a person in a state of crisis, and of anyone nearby. Is this agitated person capable of self-harm or harm to others? Should such people be treated against their will, or should their civil liberties be prioritized above the risk of mayhem? And most critically, how is risk, or lack of it, ascertained in the emotionally charged moments of crisis? How is psychosis determined?
The commitment laws essentially allow the person in crisis to give the answers—a genuflection to the principle of civil liberties. These privilege the law above psychiatric/medical judgment. Given that civil liberties are among America’s most cherished ideals, this direction makes sense. Or it would make sense, if the person in psychosis is capable of reasoned thought.
Given such overpowering impediments to clear thought, how can a sufferer possibly be expected to rule on his or her own need for psychiatric intervention?
DJ Jaffee, executive director of Mental Illness Policy Organization, offers one trending alternative: the use of assisted outpatient treatment (AOT). Jaffee writes, “AOT is a procedure that allows judges— after full due process— to commit the few seriously mentally ill who are historically and potentially dangerous to stay up to one year in outpatient treatment, often including medications, while they continue to live uninstitutionalized in the community. Outpatient commitment is less expensive and less restrictive than inpatient commitment.”
I’m not suggesting that any of these remedies is simple. Nothing about mental illness is simple. It remains a unique curse, defying cure, reclamation, policies without pitfalls. All who attempt to seriously tackle these challenges must brace for unintended consequences. Yet these hurdles are no excuse for allowing patently bad policies to continue unopposed.
We in the advocacy movement are grateful for your political leadership in the struggle for justice and thoughtful reform in our broken mental healthcare system, Senator Sanders. Please consider these suggestions for critical refining of your policies in your campaign.