Lessons from the NAMI Convention: Coping with our Broken Health Care System

John McManamy Health Guide
  • The National Alliance for the Mentally Ill (NAMI) was founded some 30 years ago by the parents of individuals with severe mental illness. At the NAMI annual convention at the end of June, I had the pleasure to meet one of these parents. I also met many others like her, people in their seventies and eighties looking after kids in their forties or fifties, wondering what is going to happen after they have gone.

    Their love and courage is the only thing keeping their kids from a life of stink and squalor and victimization, and the clock is ticking. The mental health system – such as it is – doesn’t want to know about their children.
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    The founding mother I talked to seemed weary and depressed. A day or two earlier, a prominent politician had the temerity to show up at the convention and tell these parents that the US has the best health care system in the world. Nothing had changed all these years, it seemed. This woman was still fighting the same battles. She would keep fighting. She has no choice. She has a son.

    All the parents her age bitterly recalled the bad old days when Freudian psychiatrists called schizophrenia a behavior and blamed THEM for their children’s condition. Today we know better, but the system remains horribly broken. No one explained this better than a newcomer to NAMI, the investigative journalist Pete Earley, author of the just released: “Crazy: A Father’s Search Through America’s Mental Health Madness.”

    Pete Earley belongs to a new generation of NAMI parents, a fifty-something father wondering what the hell will become of his twenty-something son, Mike. A few years ago, Pete stood by helpless as his son, a college graduate, went off his Zyprexa and flipped into wild psychosis. The doctors refused to treat him, as the patient’s consent was required, even if Mike was too far gone to make a rational decision. The only way to forcibly bring him out of his delusion would be if he did one of two things to get the authorities’ attention. A couple of days later, Mike obliged. He broke into someone’s home and took a bubble bath. It took six police and a police dog to subdue him.

    Now a felony charge hung over Mike. As Pete explained to a session at the NAMI convention, “We’ve made them criminals as well as mentally ill.” Pete’s wife urged him to do as a journalist what he could not do as a parent. He would talk to people and write about it. Thanks to an enlightened Miami County judge, Steven Leifman, Pete gained access to that city’s notorious ninth floor in the Miami-Dade County jail. Some of the individuals inside had been awaiting trial for years, shunted from one unspeakable hell-hole to another.

    Pete also worked the streets, telling the tragic stories of the lost lives there, of individuals lost in delusion, dying in slow motion, exposed to every form of degradation imaginable. Unfortunately, the streets are their only refuge. Hospitals throw them out the door. In the few available public facilities, slaughterhouse animals receive better treatment. Private contractors exploit them as prey. Inevitably, these individuals wind up back in jail. Jail and the street, back and forth, an endless cycle of national shame.

  • And there is Pete’s son Mike on the cusp. He could gain control of his illness and lead as full and productive and rewarding a life as his celebrated father. Or something could go horribly wrong and an unforgiving system may wind up condemning him to the terrors his father so eloquently wrote about.
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    And here I am, back with my founding NAMI parent. Her son joins us at the table. Here, at the convention, he has been showing people his poetry. Here, this individual is among friends, in a nurturing supportive environment. The world outside, however, is far different, far less understanding, far less accommodating.

    What will happen to this individual after his mother has gone? I can only wonder. His mother wonders, too.

    What do you think of our nation's health care system? Share your thoughts in the message boards.

Published On: July 05, 2006