The new director of the National Alliance on Mental Illness doesn’t take command of our nation’s largest grassroots mental health organization until January 2nd, but Mary Giliberti already is being grilled by long-time NAMI activist Dr. E. Fuller Torrey.
Torrey, who has been critical of NAMI lately, has fired off a letter demanding the new director publicly state her views about the closing of state hospitals. Torrey and his followers are suspicious of Giliberti because she once worked for the Bazelon Center for Mental Health Law, a driving force behind “deinstitutionalization.” Bazelon also strongly opposes the passage of Assistant Outpatient Treatment laws, which Torrey endorses.
I warned readers earlier this year of a split that was forming between NAMI members. NAMI was formed by parents who were frustrated with the mental health system, but in recent years more and more consumers have joined its ranks and some of them are opposed to issues that NAMI has traditional supported.
Torrey has become the de facto leader of the so-called “NAMI CLASSICS” who believe NAMI should focus on serious mental illnesses, such as schizophrenia, bipolar disorder and depression. This group is largely pro-medication and pro Assisted Outpatient Treatment laws, which require individuals who have multi-hospitalizations and/or violent pasts to be forcibly treated. In recent years, more and more consumers (persons with mental illnesses) have joined NAMI and they often oppose “paternalism” in favor of self-determination.
Although Torrey helped build NAMI into the most influential mental health organization in the nation, he angered many when he created his own non-profit, the Treatment Advocacy Center, to push for passage of AOT laws as well as other changes. A favorite speaker at past NAMI national conventions, Torrey has not been invited to speak in recent years and the last time his name was raised, some board members threatened to boycott the convention if he appeared. This year, NAMI invited journalist Robert Whitaker, known for his books that question the use of anti-psychotics, a move that would have been unheard only a few years ago.
A more recent example of the growing split happened last week when Rep. Tim Murphy (R-PA.) introduced a mental health reform bill that would implement many changes that NAMI has been endorsing for years. That legislation was immediately attacked by the Bazelon Center and Mental Health America, the largest consumer mental health group. It was endorsed by NAMI but insiders have told me that the national office has received numerous complaints from members who oppose Murphy’s bill. The legislation would favor a return to a more paternal view in mental health laws.
If Dr. Torrey expects an immediate reply to his letter, he will be disappointed. Because Giliberti is still working as Section Chief in the Office for Civil Rights at the U.S. Department of Health and Human Services, she is bound by federal policies that most likely would prevent her from replying directly to his letter — especially since current director Mike Fitzpatrick is still in charge until the New Year.
Torrey’s missive makes it clear that he and others are not going away and will be waiting for the new sheriff to arrive in town with their guns drawn.
Mary Giliberti, JD
Executive Director, NAMI
3803 N. Fairfax Drive #100
Arlington, VA 22203
Dear Ms. Giliberti,
Congratulations on your NAMI appointment. I am writing as a 33-year NAMI member who is concerned, with many others, whether NAMI will continue to have any relevancy to our concerns. When I joined NAMI, I did so because it was the only organization which had as its primary focus individuals with severe mental illnesses, especially those with schizophrenia, bipolar disorder, and major depression with psychosis. These were the individuals who, even at that time, were being discharged from the state hospitals without adequate follow-up, often ending up homeless, in jails and prisons, or dead.
Over the years, but especially in the past 10 years, NAMI appears to have lost sight of this most severely mentally ill group. At the local level NAMI continues to be relevant, thanks largely to the family-to-family program, but at the national level it has increasingly focused on almost everyone except the severely mentally ill.
My question is where in your priorities are individuals with severe mental illness, especially those for whom deinstitutionalization has been a disaster. Your career appears to have focused mostly on the civil rights of mental patients and the Olmstead ruling. In 2012, you were one of four participants in a SAMHSA symposium on “From Closing Institutions to Community Integration.” The closing of state hospitals in Pennsylvania was praised as having been “very successful.” Specifically, the closing of Mayview State Hospital outside Pittsburgh in 2008 was used as an example of this success and said to provide “useful lessons for other states.” A follow-up study of the discharged patients was said to show that “many individual indicators of health and well-being showed improvement, and no indicators displayed deterioration.”
The reality is otherwise, as you may know and as a recent five-part series in the “Pittsburgh Post-Gazette” makes clear. Among the final 305 patients discharged from Mayview, one-half to two-thirds appear to be doing well, including one-quarter who are living independently or with their family. Among the other half, 46 have died (1 murdered; at least 1 suicided and 8 others tried; and 7 were killed in accidents, including 2 hit by cars). Another 39 have been arrested, including 1 for murder and 1 for rape and 5 were in jails or prisons. An additional 43 are living in “long-term structured residences, some of which are locked,” nursing homes, or other state hospitals.
It is now clear that this is a relatively typical outcome when state mental hospitals are closed – the majority of patients are better off, a minority are worse off. It is this latter group which should be a priority for NAMI – the sickest of the sick, the source of most community problems associated with untreated severe mental illness.
Are you concerned about this problem? If not, then national NAMI also will not be concerned. Are you aware that some of these discharged patients are unaware of their own illness (i.e., have anosognosia) and can only live in the community successfully if they are on court-mandated treatment? It is clear that you are concerned about the civil rights of patients such as Marvin Brown to be discharged from Mayview so that he could live in the community. But are you equally concerned about the civil rights of the 71-year-old woman who Brown raped in the group home in which he was placed, despite the fact that Brown had previously raped another patient while in the hospital.
Deinstitutionalization has failed because it has been done in a mindless way, not a thoughtful way. “All patients must live in the community and make their own choices” is an ideology which does not reflect the facts now known: A small number of individuals with severe mental illnesses cannot make informed choices and some of them require long-term institutionalization both to protect themselves and other people. That is why Mayview State Hospital was built in the first place. The hospital is now being razed with proposals to use the land for a coal mine. Is replacing a state psychiatric hospital with a coal mine really improving the lives of people in western Pennsylvania?
It is important that you let NAMI members know where you stand on the problems of deinstitutionalization. The fact that you previously worked for the Bazelon Center is a source of concern since the Bazelon Center, more than any other single organization, has been responsible for the failures of deinstitutionalization.
Thank you for addressing this issue. For those of us who believe that this should be the most important issue for NAMI, it will help us to understand whether NAMI will continue to be relevant, as it once was.
E. Fuller Torrey, MD