When Leisl Stoufer's son, Cody, turned 17, she dreaded the next year.
Fear rose in her chest and tears stung her eyes. She was scared, sad and angry. Cody has bipolar disorder. After years of frequent hospitalizations, terrifying phone calls to the police and a constant battle for care, he was finally receiving treatment.
He was living in a treatment center. He was recovering.
But, the next year, Cody would turn 18, and while he sees freedom and independence, all his mother saw was a broken system that might abandon her child and leave him on the streets or in a jail cell to die. Mental illness is not treated like any other illness in this nation. To her, as a mother, mental illness is the only illness that has an age limit for care.
Treatment is hard to come by at any age, but, once a person turns 18, the options diminish for family members to help get treatment for a loved one. Our nation has traded hospitals for jail cells; we have traded compassionate care for the cold, harsh elements of the streets; we have tied the hands of parents and caregivers.
Yet somehow we have managed to convince ourselves that these homelessness, jail and sickness are better than treatment; that somehow these options preserve a “patient’s rights.”
We need to make sure our loved ones aren't shut out of treatment.
Juanita Lopez gave birth to her son, Christopher Lee Lopez, in the summer of 1977 in Portland, Ore. When her husband, Mike, died nine years later, Juanita struggled to keep her son out of trouble, but by his early 20s he had landed in jail for offenses including theft. In 2005, while held in Weld County Jail in Greeley, Co., Christopher was diagnosed with schizophrenia. For years, Christopher experienced severe psychosis, leading to his involuntary commitment at Colorado Mental Health Institute in Pueblo, Co., 12 times.
In 2006, in trouble again with the law, this time for trespassing, Christopher ended up in the Colorado Department of Corrections. Bouncing through the system, Christopher arrived at San Carlos Correctional Facility, meant to be a prison with a treatment program for prisoners with mental illness. He was put in solitary confinement, once kicking a guard.
On March 17, 2013, Christopher suffered grand mal seizures while prison staff ignored him, even mocking him. "What's going on man," a staffer asks at one point. In shocking video capturing the neglect, a prison staffer injected Christopher with the drugs Haldol, prescribed as an anti-psychotic drug, and Cogentin, prescribed for tremors, laughing at the idea of overdosing him. Moments later, he died alone. A coroner's report said he had low sodium levels, often consistent with an overdose of anti-psychosis drugs.
In a local KUSA report, his mother, Juanita, told journalist Chris Vanderveen, "Even at the humane society, animals aren't allowed to be treated like that."
For years, Mary Palafox felt powerless as she watched her son disintegrate into the distorted reality of schizophrenia.
Over the years, when her son became incapacitated, she called 911, as so many family members do. She learned of the major difference in emergency response, behavioral policies and health care delivery for those with "mental illness."
She was shocked "mental illness" was carved out of the medical system and managed by a separate health care delivery system called "behavioral health," that relied on law enforcement, not paramedics, as first responders for emergencies and crisis intervention.
In late December 2012, just days after the Newtown, Ct., tragedy, journalist Courtney Perkes of the Orange County Register chronicled the struggles for Mary, as she tried desperately to get medical treatment yet again for her son. The 2012 article, headlined, "The tipping point for mental illness," illustrated the failings of the mental health system in not just California, but much of the country.
In the Orange County Register article, Mary noted a vast difference in the interpretation of mental health law between responding agencies, depending on whether they were medical treatment teams, "behavioral health" teams or law enforcement.
The local "behavioral health" crisis team used her son's “behaviors" and "civil liberties” to base its decisions, not physical and biological symptoms or mental capacity. She realized she had a hit-or-miss chance of getting her son treatment if she involved law enforcement, which had as a top priority the community's safety.
We have to frame mental illness as a physical illness so families don't have to play a game of Russian Roulette trying to get loved ones treatment before tragedy.
In the summer of 2014, as Congress debated mental health legislation, an ordinary mother in Lexington, Ky., G.G. Burns made the courageous decision to speak to NPR's Diane Rehm on the years of struggle her husband and she have endured trying to get help for her son, whom they love dearly.
When their son was diagnosed with bipolar disorder as a teenager, G.G., an artist, and her husband were able to get him successful early intervention and treatment. When he turned 18, trying to escape bullying from peers, he refused treatment, sending the family spinning for years in the revolving door of hospitals, jails and crisis.
"Our hands are tied to help him gain treatment before tragedy," G.G. says. G.G. is a family advocate, urging policy makers to assist families in crisis with a loved one impacted by serious brain diseases, called mental illnesses.
"In every sense of the word, my son was my hero," Virginia state Sen. Creigh Deeds said at a National Press Club address in Washington, D.C., in the spring of 2014. His son, Gus, played the harmonica, piano, guitar, banjo, fiddle and mandolin. "He was handsome and witty. He had it all going for him."
But on Nov. 19, 2013, when Gus had a relapse in his bipolar disorder, emergency room staff at a local hospital said they couldn't get an open bed in a psychiatric hospital. His father had to return home with Gus with nowhere else to go.
The next morning, Gus attacked hs father with a knife and then killed himself. "Gus was a great kid," his father told CBS's 60 Minutes. "He was a perfect son. It's clear the system failed. It's clear that it failed Gus. It killed Gus."