(6-18-18) Guest Blog: A frustrated mother writes an impassioned letter to her elected officials in Washington State about waiting until someone becomes dangerous before helping them.
The Catch-22 in our medical/legal system that criminalizes mental illness
By Jerri Clark, mother of a young adult son with bipolar/schizoaffective disorder
I’m an active participant in NAMI programs and therefore have met many family members who are struggling to find intelligent help in the medical and legal systems of Washington State. 
Most of the stories I hear come from other mothers.
We are struggling to rescue our children from medical and legal systems that don’t make any sense.
Our systems institute punishment when help is desperately needed. They deny access to services and then blame individuals who are severely impaired for not solving their own crises. They push people to a precarious edge and then kick.
Mental illness has become a crime.
I’m compelled to speak in all our behalf, and this appeal is a compilation of our stories and fears. Through our dismay, we appeal to government leaders to listen and learn and to actively seek a better way.
As family members we know first hand what happens if a severe mental illness goes untreated.
Yet we find ourselves in a constant debate over why our loved ones can’t get help from a medical system that adamantly protects the “civil right” to self-destruct in an extreme state of impairment. That same system again withholds care when people finally meet “criteria” because the qualifying behaviors usually get them arrested.
This iniquitous system means that our family members have to meet a narrow threshold of violence to get hospitalized or face the 10 times more likely probability that they will go to jail, where they lose nearly all of their freedoms.
As parents fighting for the lives of our children, we feel like victims from a cruel slight of hand.
Our children are lost in psychosis, in jail, because you were protecting their civil rights?
As parents, we reject this excuse for terrible public policy. As reasonable people, with the ability to know right from wrong, we reject this justification for institutionalized cruelty inflicted on individuals with brain impairments in a time when sophisticated science and modern medicine certainly know better. “Not enough funding” and “civil rights” are the mass-marketed excuses for lackadaisical leadership.
As family members we are ready to shine a glaring spotlight on the true story about what happens when society doesn’t take care of those who desperately need care. In case of substance abuse they need to go to drug rehab Philadelphia.
We are ready to tell our stories.
Can you imagine being desperately afraid because your son, twice your size, with eyes that are dark and wild, tells you to get away, because you are a witch, a devil, a vampire?
Can you imagine calling the crisis hotline and doing your best to describe the terrifying, deep psychosis that is staring you down—and a bored-sounding woman tells you to lock your bedroom door, wear earplugs and call the police if someone gets hurt?
“There’s nothing we can do. He’s obviously quite symptomatic, but it’s not illegal to be psychotic.”
Can you imagine calling the police to report that your daughter with schizophrenia thinks she’s married and is wandering the city with a bag of groceries, getting desperate to find her non-existent husband and home?
Can you imagine being realistically fearful that your daughter will break into a residence because she is acting out a hallucination—only to have the officer chuckle and say that it’s kind of amusing that your daughter thinks the pineapple in her bag is sending her telepathic messages but he can’t do anything because the groceries also indicate your daughter is able to meet her basic needs and she isn’t a threat to anyone?
Can you imagine getting a call 12 hours later that she’s in jail for allegedly breaking into a residence? And that this is a felony charge, so diversion into a hospital won’t be an option?
Can you imagine finding out that your son, daughter, sister, brother, mother, father, is in jail because nobody would listen until somebody got hurt, robbed, or annoyed because your family member finally lost it so completely that society said, get this person out of sight?
Can you imagine learning that your child who loves trees and birds and playing on the beach is hidden away in a solitary cell, where drowning in the corner toilet may compel one of the few options left for escaping the pain and confusion?
As family members, we can imagine all of this—and much, much worse—because we live it. And we blink hard because it doesn’t seem possible that this inhumane, nonsensical treatment of individuals with illness has become normalized in our modern society.
Here is what we know: In jail, persons with severe mental illness get significantly sicker. In isolation, they escape deeper into their delusions and hallucinations, reinforcing the illness pathways in their neural networks and making the brain much more resistant to therapy.
Kind human connection is well-established as critical to healing, yet in jail our ill family members are isolated in cold environments that are designed to teach you a lesson, not help you sort out your mental confusion about what is real and unreal, safe or unsafe.
When they come out of jail, our ill family members are much sicker, much more resistant to treatment and often homeless because of the circumstances that surrounded the escalating mental crisis, lack of treatment and eventual arrest.
Despite the human and monetary cost, criminalizing mental illness seems to be society’s plan for “managing” cases of severe brain disease. As family members, we watch our loved ones crash through episodes of illness and we desperately reach out to “providers” who say nonsensical things like this:
“I know it’s painful to watch, but your son has chosen this.”
“He’s not sick enough yet. Call us back when he gets dangerous.”
“That’s not an imminent threat. That’s psychosis.”
“Getting arrested will be the best thing for her.”
“Going to jail is good news! There will be more program options!”
“There’s nothing we can do until he breaks the law.”
“I probably shouldn’t say this, but some parents let their children hurt them so they can qualify for help. Sometimes it works.”
“It’s not a suicide threat unless he tells you exactly how he’s going to kill himself—and when.”
“If you take out an Order of Protection your daughter will probably try to come home and then you can have her arrested. That’s how a lot of parents finally get help.”
“I’m sorry. I know it does’t really make any sense. You’re right: The system is broken.”
Really persistent parents beg for a visit from the elusive “mobile crisis team.” This is our best case scenario, but it’s highly impractical in many real-life scenarios:
“If you believe that he’s imminently threatening to harm himself or someone else, then you can open a referral. Then we will reach out to him when we have staffing, sometime in the next few days… if we deem him an imminent threat we will go to court as soon as we have enough staffing and if a judge signs the petition to detain then we’ll go back out to find him when we have staffing and see how he’s doing. If we can find him easily and he’s still dangerous then we’ll probably take him to a hospital, if we have enough staffing. A county crisis responder there will have to determine that he meets criteria in order for him to be held longer than 72 hours—and there has to be a bed available. Yes, he has to be imminently dangerous. They will have to call the police, though, if he’s threatening. If he hurts somebody at the hospital they might take him to jail and charge him with a crime. So, do you want me to open a case and start the referral process?”
As family members trying to mitigate harm, we struggle to free ourselves from this impossible set of contradictions: The Involuntary Treatment Act REQUIRES violence, and yet an illness behavior that is violent usually means that treatment is withheld and replaced by punishment.
At the same time, our primary advocacy agencies are spending millions to teach the general public that mental illness does’t create danger—such talk, we are told, promotes “stigma.”
So we turn one way and describe the extreme risk—trying desperately to get help before someone is injured—and turn the other way and defend that our ill family member means no harm but is just really sick. These systemic contradictions aren’t just mind-bending. They are dangerous. And because of this error in policy, our families are falling apart, our communities are at higher risk for crime and violence, homelessness gets worse, substance abuse is rampant and our loved ones with amazing human potential are being sacrificed.
What happened to mercy?
The system that denies care until somebody gets hurt and then denies care because somebody got hurt is immoral, inhumane, ineffective and ridiculously expensive.
Perhaps the most frustrating in all of this nonsense is to be told that a son, daughter, father, mother, sister, brother… has “chosen” this path.
No!
Of course our loved ones don’t choose to self-destruct. We know our loved ones when they are well and they want jobs, homes, relationships, purpose… When they are ill, their brains are misperceiving their circumstances and they are incapable of “choice.” When they say they don’t want help, it’s because they cannot perceive their own state of illness or properly assess the risk. A functioning cognitive brain is required to make a purposeful choice, and that isn’t available in a state of delusion or psychosis.
Our “system” has decided that there’s nothing to be done—until someone gets hurt or laws are broken. And here’s where the circular logic spins us around and around:
You can’t get help until you are violent, but if you are violent you can’t get help.
It wasn’t always this way.
As family members digging for any clue as to why we are in this nonsensical situation, we do our research. Basically, before most of the psychiatric hospitals closed they housed about 500,000 individuals. About 100 years ago some of those places provided respite, kindness, access to nature. Some of them were awful, and nearly all of them lost their humanity at some point. So Civil Rights lawyers and budget-crunchers joined forces and shuttered them. Now hospitals provide enough beds for about 50,000 severely ill individuals, and about 500,000 individuals who suffer most acutely are warehoused in jails and prisons, which are running out of space and scrambling to hire medical staff to do jobs that sheriffs used to do.
Statistics are pretty consistent across the country that about half of all incarcerated individuals suffer from mental illness. Lots of new books document these statistics. Insane: America’s Criminal Treatment of Mental Illness, by Alisa Roth, is well-researched and full of ugly, undeniable truths.
We family members are well aware that those old “asylums” weren’t always civilized or humane. We’re not begging to switch out jail for creepy, haunted hospitals. We’re crying out that when the hospitals were shuttered, the government promised community-based hospitals and mental health programs that would fit the need. The loosely structured, underfunded “programs” that sprouted here and there and operate with limited oversight don’t even remotely meet the need for for individuals with severe mental illness. The promises that modern pharmaceuticals would make everyone stable enough to live and work in the community were ill-informed, disingenuous and a sloppy excuse for inadequate care systems.
The brave souls who work in mental healthcare are left with the awkward task of explaining to families that their extremely ill loved ones really can’t get help until they break the law. The criminal justice system is the pit at the end of despair, when all of the other “systems of care” have dropped the ball and are watching it fall. Left to clean up the mess, criminal justice has a few kind souls who are working on diversion programs. Legal firms now employ social workers to assist public defenders.
Our children’s case managers can be giddy with relief when their clients finally land in jail: “This is a good thing!” The lawyers tell a different version:
“The criminal justice system is not designed for people who are really sick. We’ll do the best we can to help your son, but this is not a good place to get therapy or medical treatment.”
We point out this contradiction to medical providers, and the gaslighting begins: Your child has the Civil Right to refuse treatment and just wouldn’t comply with medical protocols.
Nonsense.
This debate about whether merciful, “involuntary” care should be provided requires basic knowledge about the nature of mental illness. About half of individuals with severe depression, bipolar disorder and schizophrenia are incapable of knowing they are ill. An ill brain often cannot perceive itself, and this is a well-documented complication of some traumatic brain injuries, strokes or tumors in addition to severe mental illnesses. The clinical term for this dangerously unfortunate symptom is anosognosia. The more common way to describe the symptom is “lack of insight.” Many of our loved ones who cycle through jails, hospitals and suicide attempts have anosognosia.
To say that a person suffering from anosognosia is “refusing” treatment is to deny the nature of the illness itself. This is a huge frustration for family members, who have known our loved ones their entire lives and know they they would never “choose” to be this ill—or to be homeless, break the law or hurt someone. Inability to perceive a biological illness is not willful denial.
Imagine if your mother and your doctor told you that you had a huge, bleeding wound on your arm. You absolutely cannot see or feel the injury. Would you go to the doctor and let someone stitch it? This would make no sense to you, and convincing you would require a deep level of trust, time and significant motivational therapy. Can you imagine if you said no to this nonsensical recommendation and then were charged with a crime for disobeying the doctor’s orders?
Our systems of care that provide “access” to voluntary medical interventions miss this important, diagnosable aspect of mental disease. Xavier Amador describes this critical barrier to treatment in his book, I’m Not Sick; I Don’t Need Help. As family members desperately seeking answers to unsolvable puzzles, we read these books and try to share critical information with providers. We are dismayed that most of them have never heard of anosognosia—and they don’t want to learn about it from us.
As physicians who treat mental illness become increasingly scarce, we often find ourselves talking to “providers” with limited training and knowledge about mental illness. We struggle to describe our loved ones at “baseline” to social workers who make quick judgments about how to assign coveted hospital beds. Those who don’t get beds usually spiral through jail, where lawyers and judges make the medical decisions. As parents, we often find that we’re the ones trying to teach decision-makers about mental illness—and why care is critically needed BEFORE absolute hell is unleashed.
Here are some things that we know:
Your brain is designed to recognize patterns, to make sense of the world. If the world isn’t making sense, your brain will try to organize its thoughts by clinging to anything that can explain what is happening. Your brain is also designed to make social connections and to find a way to belong. If your brain malfunctions because of an injury or illness, it might provide misinformation. People might try to explain that you aren’t making sense or that you don’t fit in. In this moment of disconnect and inevitable distrust, your brain will try desperately to invent an explanation. Hallucinations or delusional stories might emerge into consciousness. Paranoia is common as the brain struggles to reconcile the disparities.
As your brain becomes increasingly disorganized, you will become more desperate to make sense of your circumstances and you will become increasingly likely to hurt yourself, someone else, or property. A lack of physical safety (being homeless or in jail) will always worsen these symptoms and increases the desperation.
The brain is also designed to “rest” by developing habits. The more frequently you visit your delusions and hallucinations, the more easily and frequently you will slip back into those thought patterns. If there is little else to cling to (like if you are in an isolation cell in jail), you will most likely “live” in your inner world of delusion and hallucination, making those erroneous thought patterns stronger and stronger and more resistant to healing.
Our current system REQUIRES an individual to reach this level of mental decompensation again and again, damaging a long-term prognosis and effectively forcing an ill brain deeper and deeper into its illness.
An intelligent, financially sound medical system would protect a person’s right to recover.
Washington and about half of the states in our country have adopted a “need for treatment” standard that recognizes the need for intervention when “an individual lacks insight into his or her illness and cannot make an informed decision about psychiatric care.” According to the Washington State Institute for Public Policy, which published a report on Involuntary Civil Commitments in July 2015, “a court may make a determination that a refusal to seek treatment will result in psychological or physical deterioration” and thus can compel treatment.
But it’s not happening.
This standard can save lives, but it needs to be applied in real time, on the street and in our homes. When they are super sick, we can’t get our loved ones to court! If we can get actual help when our loved ones are in crisis, then we don’t have to take out Orders of Protection. If a police officer can use common sense to recognize a deep level of psychosis, then he can drive a person to help BEFORE someone gets hurt or laws get broken. Our loved ones won’t have to entirely self-destruct before help comes calling.
If we fortify this intelligent “Right to Treatment” standard and support it with resources, we can break the line-up of the seriously ill heading for jails and prisons, and the public funds that are saved can be used to support humane systems of care.
If we have a law that is intended to protect individuals with severe mental illness, then medical staff, crisis staff and police need to participate by applying this standard to get people into care before they are too ill to function in our communities—before they become so disoriented that jail is the only place left for them to fall.
We need new habits, a new process and adequate resources so that good people can make good choices about how to help—not punish. We need to equip our communities with response systems and places to go that make sense. Clinical social workers should not be forced to worm their way out of nonsensical legal-medical riddles by encouraging parents to let their children hurt them— in order for them to go to jail—in order for them to get “services.” And that will be “good news!” These are not the ways of an educated society.
We can do so much better.
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