Ed's not scary

Ed Hoffman lives with schizophrenia.
in Arts, Civic, Health. Tags: Healthcare.

His afternoon routine is no different than yours or mine. He gets off work, enjoys a few puffs from a hand-rolled cigarette and a bit of sunshine in the backyard before dinner. Every week, Ed’s sister (and caregiver) takes him back to her nearby home, where he has his own room. He plays with his niece, and they have dinner together as a family.

Ed Hoffman lives with schizophrenia in a group home for adults with severe mental illness in Redwood City, Calif. “Community-centered treatment of schizophrenia allows Ed to lead a productive life outside the sheltered confines of a mental hospital,” according to Schizophrenia.com, a leading non-profit web community.

His living arrangement is different from most. A lot of communities still wrestle with health care policies based on debunked theories from the 1960s and ’70s that blame parents for causing their children to have schizophrenia.

“Approximately 1 percent of the population develops the chronic, severe and disabling brain disease during their lifetime – more than 2 million Americans suffer from the illness in a given year,” according to Schizophrenia.com.

"At any given time, there are more people with untreated severe psychiatric illnesses living on America’s streets than are receiving care in hospitals," Treatment Advocacy Center says. Worst yet, our nation’s jails provide psychiatric treatment for more people than hospitals.

“Why have our nation’s streets and jails become de facto homes and treatment centers for people with these brain disorders?” asks Katie Cadigan, an award-winning documentary filmmaker.

When Medicine Got It Wrong documents Ed’s story – which reveals the origins of the tragic state of mental health care today.

Ed started developing symptoms when he was a young teenager in the 1970s. The disorder often appears earlier in men, usually in the late teens or early twenties.

He became so ill in high school that he was sent to Napa State Hospital, where he spent his junior and senior years. “His parents were advised not to visit him too much so that he could ‘bond’ with the treatment team,” said Cadigan, the film's producer. “The underlying assumption: Fran and Tony Hoffman must have done something to cause their son to develop paranoid schizophrenia.”

Fran and Tony ignored that advice.

Tony teamed up with a small group of parents who became the first in the nation to publicly refuse blame for their children’s mental illness.

When Medicine Got It Wrong shows how Parents of Adult Schizophrenics launched one of the fastest growing grassroots movements the nation had seen to date, ushering in an era of dramatic advances in understanding, treatment and brain research,” Cadigan said.

These parents waged their battles in an era when mental hospitals were shutting down. The most severely ill patients were turned over with the promise of community care -- which never materialized.

In a 1978 testimony before the California State Legislature, Tony said, “You could not run a business on the organizational and management structure of the mental health system.”

“This topic is in my bones," Cadigan said. "My brother, John, developed schizophrenia over 15 years ago and our family plunged with him into the vastly misunderstood world of severe mental illnesses. Our best guides along the way towards his recovery were not medical personnel, but rather other families who also had loved ones navigating our nation’s mental health system.”

When Medicine Got it Wrong, a co-production with ITVS and KQED, is produced and directed by Katie Cadigan and Laura Murray. The documentary was recently showcased at the 2007 Independent Feature Project’s work-in-progress market. Cadigan’s most recent feature documentary, HBO/Cinemax’s People Say I’m Crazy, won international acclaim and broke ground as the first film on schizophrenia ever photographed by a person with the illness.