A Different View of Mental Health Advocacy

11-24-14  On Friday, I posted a speech that D.J. Jaffe had given at the New York State National Alliance on Mental Illness convention that highlighted the difference that he sees between being a Mental Health Advocate and Mental Illness Advocate. Larry Drain, the Depression and Bipolar Support Alliance’s legislative liaison for state affairs in Tennessee, responds in the blog below with a different point of view. Drain recently gained attention in the media after he and his wife of 33 years were forced to separate so they could keep her health insurance. Tennessee did not expand Medicaid and Drain has been protesting by writing a letter every day to that state’s governor. 



  If you have not read D.J. Jaffe’s speech, nothing I say will make much sense but I read it and here is my response. Jaffe’s basic argument is, as I understand it, really simple. drainWe spend far too much money on people with less serious mental health issues and far too little on people with serious mental illness. That spending has been fueled by the people who have a vested interest in that kind of allocation of resources, and the result has been a tragedy of immense social and personal dimensions. Jaffe cites the number of people in jail with mental illness and the number of homeless and says this has been the direct consequence of this misapplication of resources. His solution is the Murphy Bill. Provide increased funding for psychiatric hospitalization and increase the use of Assisted Outpatient Treatment being the specific remedies largely proposed by the bill.

The most important part of Mr. Jaffe’s speech is not what he says but what he doesn’t say.

At least 5 billion dollars in spending have been cut from state mental health budgets in recent years. In my view that is the most important single fact about the mental health system in the last several years. Systems that were at maximum basically skeletal are now down to less than bones. In Tennessee the first proposal for the budget for next year is due out on Monday. Early indications are there will be a 7% cut proposed.

One casualty will probably be the network of 46 peer support centers. Peer support centers in Tennessee serve about 3500 people a day. The people served by the peer support centers are largely those diagnosed with severe mental illness. Data indicates that they reduce hospitalization for those who attend by 90%. It costs the state about $3 a day for someone to attend a peer support center.

That is a real problem. The problem is not misallocation. It is the lack of resources to allocate. To not even note that or discuss that is a curious omission. I don’t understand how it can be missed or ignored. And I question how accurate any description of the issues can be that ignores it. I can’t say I have lot of knowledge about other states but I do know Tennessee and having services to access to is a major issue for everyone seeking help.

In Tennessee another major issue is access. Due to lack of Medicaid expansion over 82,000 people with mental health diagnoses and over 32,000 people with diagnosis of severe mental illness, lack the insurance they need to access any services. In almost half the states in this country the same issue is real. Mr. Jaffe does not see this as even a relevant issue from what I can tell, but it is worth noting that Rep. Murphy who preaches about serving the seriously mentally ill has voted numerous times to repeal the law that would give them access to any of the services he says they need. Mr. Jaffe ends one paragraph like this, “360,000 are behind bars, and 200,000 homeless because we are now focused on improving mental health, rather than treating serious mental illness.” My first question would be does he have any proof of this other than his assumption that it is true? But there is an even more basic question. What does he really mean by this?

What is the distinction between focusing on mental health as versus mental illness? What is the translation, the code, to what sounds like on the surface a meaningless distinction? I believe that when you take away the fancy words what Jaffe is saying is that moving away from long term psychiatric hospitalization towards community services has resulted in 360,000 people being put in jail and 200,000 being homeless. Basically, most people with serious mental illness suffer from a deficiency or psychiatric hospitalization.

If I am to any degree accurate Jaffe’s statement is remarkably naive. He substitutes emotional rhetoric for good sense. He ignores the steady emaciation of the mental health system in virtually every state. I seriously question whether any experts in the field of homelessness or criminal justice would buy his idea that criminality or homelessness is simply a symptom of mental illness. Ignoring poverty, drugs, trauma, gangs, racism, unemployment, social pressures and experiences and a host of other factors as causative agents just don’t make any sense. I don’t know of anyone other than someone who has a personal investment in the Murphy Bill who seriously believes that psychiatric hospitalization in and of itself prevents crime or homelessness.

A side note on numbers since I will return to that issue throughout this post. Mr. Jaffe quotes the figure 360,000 people with mental illness in jail and 200,000 homeless people with mental illness. Perhaps there is evidence that these people meet Mr. Jaffe’s criteria of seriously mentally ill and that they have a history of ineffective treatment or even no treatment. Perhaps there is. I just don’t know what it is. Personally this sounds like another over-generalization.

Mr. Jaffe says, “I admit the boundary between mental health and mental illness, is debatable….”

That is the most accurate statement in his entire talk. I can’t think of one professional voice I know of, other than those who have a personal stake in the Murphy Bill or in the Treatment Advocacy Center that would buy it. The idea that if you don’t need to be in a psychiatric hospital that your issues are not important, serious and deserving of help is nonsense.

Again no, I repeat no professional I know of would take this as a statement deserving serious consideration. The notion of “worried well” is akin to telling one starving person that his biggest problem in life is that another starving person eats too much. This is Mr. Jaffe assuming that advocating for the seriously mentally and advocating for the vision of the Treatment Advocacy Center are one and the same thing. I really question that, as do most of the people I know.

Mr. Jaffe’s next argument is that many people lack insight into the fact they need treatment. Many people lack insight including doctors and mental health advocates, but he goes further than that. Many of the seriously mentally ill have brain damage he says that prevents them from having insight into their problems and that according to him is a proven scientific fact. They have anosognosia, a concept borrowed from studies of stroke victims. The concept of anosognosia is a sacred item of faith for Mr. Jaffe. It is a core concept in justifying the necessity of coercive treatment so dear to Mr. Jaffe’s heart. There are some problems though. I don’t think there are any independent studies that substantiate the notion. Any doctor who looks at a brain scan from a stroke victim can tell if that person has anosognosia. There are no widely accepted notions of what a brain scan from someone with mental illness looks like to the best of my knowledge.

Perhaps I am a little cynical but I seems that anyone who says that anyone disagreeing with psychiatric opinion must have brain damage hasn’t dealt with many psychiatrists. Another side note on numbers. Most of the time the notion of anosognosia is used someone will tell you that 50% of the seriously mentally ill have anosognosia. Using Tennessee as an example let’s do the math. Tennessee has about 6,500,000 people. According “to studies” that means 156,000 Tennesseans have a serious mental illness. According to Mr. Jaffe that means that 78,000 of them have anosognosia. That means they have a mental illness they don’t recognize with impactful symptoms that probably disrupt daily life in a serious way.

Where are they?

By definition they are probably not being served in the mental health system. They don’t recognize they have a problem. Tennessee has about 12,000 committals a year to psychiatric hospitals. There are 21,000 people in prison. Even assuming that all the committals have anosognosia (which seems far fetched to me and given that 12000 committals are not 12000 people) and that all 21,000 people in prison have a severe mental illness and don’t recognize it (which is not true and no one believes) there are still enough people missing to fill a good sized Tennessee town. Do the math in any state and the numbers will be the same. No one is really missing.

The 50% of severely mentally ill is closer to religious belief than scientific fact. Saying that some people at some time in their life lack insight, acknowledgement or even honesty about what is going on in their life seems to me to be a pretty good description of virtually everyone I know. Saying that blindness can be so bad it can be incapacitating again seems common sense. Anyone trying to follow national politics can attest to that. Saying that it can be scarily rigid and resistant to help seems common sense to me. But to say it is all the result of brain damage that only affects people with severe mental illness seems to be a convenient fiction with little or no basis in fact.

Jaffe says, “Historically, people with serious mental illness were a priority because our budget was spent on the hospitalized, but mental health advocates have changed our focus….” He needs to revisit history again. My first job in a psychiatric hospital was in 1974. I asked one of the first patients I met how long he had been there. He stopped and seemed to do the math in his head. “About 45 years….” I asked him why he was there. He stopped again. “I don’t remember. I would be glad to ask someone though if you need to know…”

Psychiatric hospitals closed because they were warehouses that wasted human life after human life. They did not prepare people for life. They stole it.

The evidence is overwhelming. To say that caring for serious mental illness is the same as housing those people with a serious mental illness in a psychiatric hospital as a substitute for any kind of real life is neither caring or a statement of fact. Psychiatric hospitals role in the mental health system changed because people discovered that what happened there was frequently not very ethical or honest and really not very effective. I think Mr. Jaffe believes psychiatric hospitalization is an evidence-based practice. I don’t know of anyone else that thinks that. Aside from perhaps crisis stabilization, I don’t know of any evidence it works at all. Insurance companies stopped paying for it because it was way too little bang for way too many bucks.

Psychiatric hospitalization as the primary mode of treatment basically self destructed as the truth about it became more widely known. The claim that mental health advocates stole it away somehow is simply silly. A word about reality again using Tennessee as an example. A state psychiatric bed can cost as much as 345,000 dollars a year for more intensive care. Peer support centers that deal with many people with histories of chronic hospitalization and largely keep people out of the hospital cost $3 a day. The 7% budget cut will probably eliminate peer support centers. That budget is about 4.5 million dollars a year. It serves about 3,500 people a day…. About the price it would take to hospitalize 12 people a year.

Regardless of polemics like Mr. Jaffe, or how many times he is in the paper or interviewed on TV or how fervently Rep Murphy tries to seize on every tragedy to toot his horn what do you really believe Tennessee is going to choose to do? The ship of psychiatric hospitalization sailed long ago and Mr. Jaffe missed the boat. Mr. Jaffe claims “all mental illness is not serious.”

This is one of his most interesting statements.

I don’t know if he realizes that this is a challenge to the bulk of mainstream psychiatry which certainly doesn’t share that opinion. If he does, he will find out that many mental health advocates share the feeling that the mental health system has ensnared way too many people and medical-ized way too much of ordinary human life and suffering. Again a lot of it is in the translation. If he is saying people often have an amazing ability to cope with the distress in their life and an incredible resiliency in the face of hard times, I agree with him. If he is saying that even people in difficult times can maintain their ability to manage and make good decisions, I agree with that. If he is saying that things are not serious until life gets totally out of control, I think that is nonsense.

If he thinks he knows the secret of how to measure the seriousness and reality of one person’s pain against that of another he is deluding himself both about his importance and his insight. Obviously all things come in degrees and if all he means is that some people need more help than others — that seems more an obvious platitude than a great insight. His claim that we are helping those that need less help at the expense of those who need help more is simply not true. Most state legislatures are trying hard to make sure everyone is helped less! Jaffe says lot of important things and I have not attempted to deal with most of them.

But I want to close with a thought about Assistant Outpatient Treatment. I want to point out in closing the major paradox of what Jaffe, Torrey, and Murphy say about AOT. They spend a lot of time tearing the mental health system to shreds. They say it is insufficient to the needs of the seriously mentally ill and is polluted by its allegiance to the notion of mental health. Yet, they also proclaim loudly the value of AOT. This is basically saying that forced participation in a system that is no good is good. Perhaps I haven’t explained it very well but it sounds a lot like trying to have your cake and eat it too. How can committal to something that is no good be good? It seems a curious notion to me.

Mr. Jaffe is right about one thing though and very right. Although many improvements have been made, much of what happens in the mental health system is lacking and even shameful. The treatment of people with mental health issues, especially those with serious issues, in the correctional system of this country is a national disgrace. The continued amputation of needed services and programs in state after state is a national disgrace. But so is the continued reliance on approaches that don’t work and even hurt the people they claim to help. And so is the continued effort of so many to advance their ideas or positions at the expense of a simple question. Regardless of who’s turf or status is affected what really works? I still remember listening to Robert Whitaker wonder if an honest mental health system will ever be possible.

I still wonder.

Larry Drain is the current Legislative Liaison on state affairs for DBSA Tennessee.  He has been the past chairman of consumer advisory board, a member of TMHCA board of directors, involved with Tennessee Health Care Campaign,  the Tennessee Suicide Prevention Network as well as several other causes.  He is currently president of NAMI Maryville and a member of the NAMI policy council.  He writes a blog “Hopeworks Community” (http://hopeworkscommunity.wordpress.com) that has international readership.  

About the author:

Pete Earley is the bestselling author of such books as The Hot House and Crazy. When he is not spending time with his family, he tours the globe advocating for mental health reform.

Learn more about Pete.