Not long ago, Treatment Before Tragedy founding member Mary Palafox drove from her home in southern California to the Staglin Family Vineyard in the state’s idyllic Napa Valley for a fete, the 20th Music Festival for Brain Health, sponsored by IMHRO, a nonprofit started by the Staglin family to advocate for brain research. An exclusive event, filled with headliners, the event featured a concert by the singer Jewel.
But the meeting has special meaning for Mary: she is a nurse who has struggled for years to find effective treatment for her son, 30, diagnosed with schizophrenia, and she understands deeply the importance of treating “mental illness” as a physical illness not much unlike a heart attack or epileptic seizure.
For years, Mary has been tirelessly advocating to reframe “mental illness” as an issue of brain health, founding a Facebook page, FedUp4Brain, to advocate for reclassifying mental illness as brain disease.
In Napa Valley, Mary met with Rep. Tim Murphy (R., Pa.), a psychologist, and she expressed her support for legislation that Rep. Murphy introduced this year, H.R. 3717, “Helping Families in Mental Health Crisis,” pressing for an understanding of “mental illness” as brain illness.
With former Rep. Patrick Kennedy, Mary advocated for a simple idea: when treating someone with serious mental illness, medical professionals should evaluate whether a patient has the “capacity” to make a sound medical decision, just as they would do with someone who has arrived in an emergency room with a stroke.
In true 21st century-style, she followed up with a Tweet.
For years, Mary 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.
Soon after, Mary joined a network of mothers, family members and community members to begin the conversations that led to the formation of Treatment Before Tragedy.
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. This resulted in one out of 20 attempts for a 72 hour hold.
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. But when she could get her son medically evaluated by a physician, he was hospitalized every time. She noticed the pattern: same county, same symptoms, same mental health laws, different evaluators.
The problem she faced, like many families, was getting him out of his home and in front of a licensed medical professional. One time, her son jumped out of her moving car, onto the freeway. Even when her son was hospitalized, his treatment team couldn’t give him medications against his wishes, until inpatient mental health court proceedings occurred. Several times, he was “rescued” by well-meaning friends and released before treatment could even start, resulting in a waste of time and finances.
Only after a close brush with tragedy was Mary given the opportunity to get her son treatment. When he became gravely disabled, she gained legal guardianship, and he was accepted into a mental health court program, because of criminal charges he received during a thwarted suicide. Mary noted some unexpected secondary “benefits” within the criminal justice system. Mental health law did not usurp her son’s best interest nor that of the communities’, and he was immediately restricted from having access to any firearms. Treatment could begin without interruption.
Almost two years after sharing her story with the Orange County Register, Mary continues to advocate for effective treatment so her son can remain stable. As a registered nurse with administrative experience, she also advocates to integrate mental and physical health care, as well as medicine with the judicial system.
She says, “Much of the treatment for mental illness is outside of the scope of practice for behavioral health care’s science and philosophy. Mental illnesses are brain disorders, not behavioral disorders, and the physical, biological symptoms of psychosis, delusion, hallucination and paranoia are what families and society want addressed. Mental health law coincides and is extremely intertwined with the functioning of our mental health departments, providing barriers to necessary medical treatment, especially for those who lack capacity to understand an informed consent, practices which are unheard of within our physical health care system.”
“My stomach is in knots,” she tells Treatment Before Tragedy,as her son walks the tight rope between behavioral health and the judicial system. “They don’t have institutions anymore, so families are the institution,” Mary says. “Taxpayers need to know families are the largest provider for food, clothing and shelter for those with mentally illness. All efforts thus should go towards supporting family caretakers and maintaining this very important relationship.”
Not long after the publication of the Orange County Register article, Mary joined other mothers, family members and community members to launch the organization that is today Treatment Before Tragedy.
“If my son had autism, he would have a ‘right to treatment’ within physical health care, based on his lack of capacity to understand his need for treatment. If my mother had Alzheimer’s, I could advocate for medical services, but in behavioral health, I had to wait for my son to deteriorate to the point of dangerousness and/or grave disability. Watching that happen was pure agony. Hearing mental health professionals apologizing over and over again, concerning the broken system was also totally unacceptable and inhumane to witness.”
Over the years, Mary advocated successfully for Orange County, Calif., to pass “Laura’s Law,” a state statute that allowed counties to implement assisted outpatient treatment for those with serious mental illness. She voices concern whether county mental health lawyers will ultimately have their clients and the communities “best interest” at heart or continue the old practice of “expressed wish” and repetitively remind consumers of their right to refuse treatment.
In California, there is an increasing effort to repeal several sections of a law that gives mental health professionals “immunity” for their decisions and any subsequent negative outcomes. Liability for their decision making would greatly change future mental health care.
It is very clear that persons with severe brain disorders and their families need an organization that has the courage to change political will and make brain treatment and research a priority among citizens of the United States. Hopefully one day, sound neuroscience will replace third-party speculation and interests with confident medical knowledge, classifications and treatments for all brain and behavioral disorders with less stigmatizing diagnostic labels, while still protecting the patient’s well-being from adverse treatments or any unnecessary medical and/or judicial institutionalization.
Mary and the other founding members of Treatment Before Tragedy are grateful for the important work the Staglin family has spearheaded to make this nurse’s dream a reality.
Categories: Gray Matters