Like many bi-national Canadians, I have strong ties to my country of origin, the United States. I realized early on that American families were much better organized around helping people, like my daughter, who live with severe mental illnesses. During these years I've also realized that the U.S.'s influential mental health policies are having a negative impact on trends in the delivery of Canadian mental health care.
The U.S. is in the midst of a historic battle about how to fix its disastrous mental health system. During the decades that mental health care has been under the control of the Substance Abuse and Mental Health Services Administration (SAMHSA), there have been significant changes. Now there are ten times as many people with mental illnesses who are incarcerated as there are psychiatric hospital beds.
These horrific conditions have developed because SAMHSA, headed by a human rights lawyer, has chosen to support the beliefs of the alternative mental health movement rather than to promote science based care. These beliefs make it inconvenient to acknowledge that most psychotic people have a brain based inability to understand that they are ill. As a result, SAMHSA funds groups like Protection and Advocacy for Individuals with Mental Illnesses (PAIMI) that help ill people refuse treatment that could help them get better. Families wish someone would protect their severely ill family members from the groups that advocate for their right to be severely psychotic. As well, these groups block efforts of families to get the information they need to care for very ill relatives.
To remedy this situation, a Congressional subcommittee, after a lengthy investigation, developed a bipartisan bill, the "Helping Families in Mental Health Crisis Act." Developed under the leadership of Republican Tim Murphy, a clinical psychologist, the bill currently has 28 (out of 80) Democratic co-sponsors. However, other Democrats have been slow to come aboard.
Now the lack of Democratic support has morphed into something even more dangerous. Under the guidance of House Minority Leader Nancy Pelosi, the Barber bill has been introduced. It guts every important change proposed in the Murphy bill.
Nancy Pelosi justifies the Barber bill by saying that she wants legislation which "the mental health community can support." She seems to think that the vast array of psychiatric survivor groups that SAMHSA's largesse has nurtured represent the "mental health community." These groups have organized an intense campaign to lobby members of Congress with petitions, and letter writing campaigns.
Meanwhile, there's been a lack of leadership from the groups that should be actively lobbying to get the Murphy bill passed.
For decades families coping with mental illnesses were represented by the National Alliance on Mental Illness (NAMI), an organization that was started by family caregivers of people with schizophrenia. There are over 1100 chapters of NAMI across the US and many might have expected the NAMI website to be teeming with initiatives to support the Murphy bill. Unfortunately, NAMI no longer represents the perspectives of families advocating treatment for people with the most severe mental illnesses.
During the years that I have attended NAMI's national conferences, I have noticed a disturbing trend. A growing number of families talk about being unable to get any care for their daughters and sons who have become psychotic. When I ask what their NAMI chapters are doing about this, they have told me the chapters have come to rely on SAMHSA money to operate and don't want to anger these funders.
It has become harder to distinguish NAMI's beliefs from those of SAMHSA. Its new Executive Director, Mary Giliberti, is a former lawyer for the Bazelon Center, the major force behind efforts to block any involuntary treatment of people with mental illnesses.
And SAMHSA's perspectives on mental health care have been well represented by Board President, Keris Myrick, who blogs for Mad in America. Ms Myrick is part of an upcoming group presentation in Toronto that promises new perspectives on psychosis, or what the group prefers to call "extreme mental states." Characterizing neuroscience based understandings of psychotic disorders as "reductive" and "narrow," presenters at this event bring their "existential and intellectual authority" to explain how psychosis is a state of mind that "passes." They believe it can leave people "weller than well."
This might come as quite a shock to the many American families I know who can't get treatment for their very ill sons and daughters whose psychotic states aren't 'passing.' Instead, these are families whose deeply loved and sensitively nurtured children have joined the millions of Americans living with untreated severe mental illnesses. They are homeless, victimized, and cycling in and out of jails and prisons.
I hope Ms. Pelosi will watch the reception that Rep. Murphy received last week at the American Psychiatric Association, a group she apparently doesn't consider to be part of the "mental health community."
And she needs to read the testimony of parents in her own state. Last week, families in California finally persuaded the Board of Supervisors in Orange County to fund Laura's Law which provides Assisted Outreach Treatment services to those who stumble back and forth between the street, emergency rooms, and prisons. The delays in implementing this common sense and proven strategy have occurred because of the opposition of the groups SAMHSA helps fund.
The Democratic Party has mostly been consistent in its support of the value of science. However, it has failed to protest when, as Rep. Murphy says, SAMHSA has behaved as if schizophrenia and bipolar disorder don't exist. As a lifelong Democrat and enthusiastic supporter of President Obama, I urge Ms. Pelosi to get the Democratic leadership to endorse a sensible approach in responding to the reality of severe mental illnesses. They must stop blocking the desperately needed transformation of the US mental health system.
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