Health knowledge made personal
Join this community!
› Share page:
Go
Search posts:

An AOT reader: When people want to help you despite yourself

Posted Dec 11 2012 2:52am

Coercion is a misguided notion to base mental health care on.  It makes “help” a traumatic event and in the end leaves people questioning rather or not the “solution” is worse than the “problem” or even maybe that it is the real problem.  In the past couple of years Hopeworks has had several posts relating to AOT.  Reprinted below are several of these posts.

 

Andrew Goldstein

Andrew Goldstein killed Kendra Webdale.  It was a major tragedy by any measure.  A senseless act and a death that should have never happened.  The tragedy didnt stop though with the death of Kendra Webdale.  Her death ignited a firestorm of controversy that led to the passage of “Kendra’s Law” and the spread of what was titled “assisted outpatient treatment” (AOT) to 44 states.  And there is a concerted effort this year to make Tennessee the 45 state.

The campaign has been spearheaded by an organization called the Treatment Advocacy Center and their message has been clear and direct.  In their view, mentally ill people who dont take their meds are dangerous and violent.  They have carefully catalogued every tragedy where a mentally ill person was violent in the last few years as proof of their position.  Furthermore they believe that at least 50% of these people  dont even realize they are sick and left to their own devices will refuse the very treatment and medication that will make their life better and keep us safe from them and them safe from themselves.

Their proof was Andrew Goldstein.  And in their view the only thing to do was to pass a law that made it legal to force people like him to accept the treatment they either didnt want or didnt have the insight to know they needed.

The problem was they were wrong.  Andrew Goldstein wanted treatment.  The attached article tells the truth about his history.  Bedlam on the Streets – NYTimes.com .  Make no mistake Kendra Webdale was a victim of Andrew Goldstein.  But make no mistake.  Andrew Goldstein was not someone who refused to acknowledge he needed help.  He was not someone who refused to seek help.  He was someone who was passed from program to program in a system that was poorly funded, overcrowded and lacking the community resources to allow him to live successfully in the community.  He was the victim of a mental health system lacking the programs, the vision, the resources to treat someone with his level of disturbance.  And he was living proof if you do not pay for adequate services the result will be tragedy on every level.

I talked today with friends from New York who have done a lot of research on the AOT experience on New York.  They have looked at many of the other tragic cases in New York and found the same thing:  case after case of people involved in multiple treatment programs, often passed from program to program because they were difficult to deal with, who were placed in living situations that they could not sustain with little or no resources to turn to.  In the end, no matter what the state, we will all reap the harvest sown by inadequate mental health systems.  You can refuse to pay for services.  You cannot refuse or escape the consequences of that decision.

Instead of a witch hunt for “crazy people who wont take their meds”  we need to look at a system that chronically fails the people it seeks to help.  Accessibility to services, both enough services and the right kind of services, is the problem.  It is the cancer which destroys hope for so many people, so many families, and ultimately all of us.  You cant court order people to things that dont exist.

The problem is not the antics of a few non insightful people.  The numbers are truly amazing.  In a previous post I talked about the county I live in.  Blount County has probably somewhere in the neighborhood of 2000 people with mental illness who have TennCare.  They have about 2000 people with no insurance at all.  No private providers will touch any of these people.  The bulk of these folks are seen by one mental health center with about 4 therapists and 2 doctors.  That is 4000 to 6.  The services they provide are counseling- normally one hour long session every two weeks, and medication management- an appointment with a psychiatrist every 6-8 weeks at most.  The waiting list to get in is 12-14 weeks last time I checked.  The community services that someone needs with a severe mental illness to stay stable in the community either dont exist or have such long waiting lists that they are basically unavailible for most people.

The largest suprise is not that Andrew Goldstein existed, but that so few Andrew Goldsteins exist.

AOT takes the attention from where it really belongs and allows us to justify the efforts we make by pointing to those who “refuse our best efforts.”  Financially it will make even looking at these problems harder.  New York spends 55,000,000 dollars to serve about 1000 people at a time.  Most of these people live in New York City– about 600 or more.  Many of the counties in New York dont even use AOT because they have found they have inadequate services to refer them  to and they have found it easier to serve those they do without the added yoke of coercion around their neck.  According to estimates the legal expenses for everyone brought to court are about $7500 per cases.  Again for many communities a prohibitive investment.

Anyone who has done any kind of treatment will tell you that treatment with coerced clients rarely succeeds.  Mountains of research in social psychology show the same thing.  And when we go in the wrong direction we just go farther from the direction we need to go.  If we dont take the issue of accessibility to services as the supremely important thing it is we are planting the seeds to tragedies untold.

In Tennessee this years budget will be tough at best.  There are 32,000,000 dollars in one time funding from last years budget that will all have to be refought and regained.  TennCare cuts may be upwards of 300,000,000 from estimates I have heard.  To plant AOT in the midst of all this would be a tragic mistake.

We need help.  But we need help that is helpful.  The fears of many family members about their loved ones are real and need to be honored.  But they need to be honored by creating a system that engages them in a treatment system that meets their needs in a timely and effective manner.  Our mental health system is in need of new birth and new hope.  Through support groups and other activities I have met many, many people who are mental health consumers.  It is astonishing how many people see the mental health system as being as much a source of stress and pain in their lives as the illnesses with which they are diagnosed.  It shouldnt have to be that way.

Nobody should have to die.

On the Duke study and the truth of AOT

In the last few weeks there have been several posts on this website about AOT.  Assisted outpatient training is now found in 44 states and it looks like there will be a strong attempt to make it happen in Tennessee this year.  The people who support AOT have almost all said the same thing to me.  “What about the Duke study?  It proves AOT works.” One person even basically said, “I bet you wont talk about the Duke study.  You arent talking about all the facts.”  So lets talk about the Duke study.  See this link for  the report about the study:   http://www.omh.state.ny.us/omhweb/resources/publications

Before I begin though I want to mention one study that no one knows about as a way to judge what you hear about AOT.  And it has to deal with a simple question.  How well does voluntary treatment work?  Perhaps if it works well the best place to put resources might be in making voluntary treatment more attractive.  In other posts I have spoken at length to this lack of attractiveness as one reason so many people dont carry through. So what do the facts say.  The largest study I know of happened in the state of Tennessee.  The state of Tennessee has something called the Behavioral Health Safety Net.  It is a program for uninsured people with mental health needs.  It offers the barest bones of mental health services.  Basic medication management, counseling every couple of weeks, and minimal case management.  Wouldnt seem like something worth putting much hope in.  According to Commissioner Betts the Safety Net served 25,000 people last year who wanted services.  Less than 200 ended up in a psychiatric hospital.  If I have done the math right that is a success rate of 99.2% with one of the hardest populations  in Tennessee with only the barest of services.  Each person served cost $750 a year.  New York, in its AOT program spends about $55,000,000 to serve about 1,000 at a time.  It seems clear to me who gets the best deal, but lets talk about the Duke study.

There is a big problem.   I actually read the study and in the process discovered all kind of things I didnt expect.

What I thought AOT was is not what it actually is.  After reading all the press clippings and listening to the adoring praise of the Treatment Advocacy Center I thought AOT was a method to keep people out of the hospital.  I think this is what most family members of the mentally ill believe it is.  They see it as deliverance for troubled loved ones.

But listen to what the study says, “…in nearly three-quarters of all cases, it is actually used as a discharge planning tool for hospitalized patients. Thus, AOT is largely used as a transition plan to improve the effectiveness of treatment following a hospitalization and as a method to reduce hospital recidivism.”  75% of the time it is used with people already hospitalized.  I was astounded.  There is nothing wrong with a discharge plan, but that is very different from portraying something as the savior of public safety.  I always had this feeling, both from those in favor and those opposed to AOT, that it functioned to effectively come down and “swoop away” those people having a hard time functioning before things got to the place that they had to be hospitalized or ended up in jail.  The people I know in Tennessee that are in favor of it basically portray it in this way also.  It is a place for parents, in particular, to go when they have no other place to go.  That is not the way it works in New York.

Going back to the start of the program I found this paragraph, “The introduction of New York’s AOT Program was accompanied by a significant infusion of new service dollars and currently features more comprehensive implementation, infrastructure and oversight of the AOT process than any other comparable program in the United States. It is, therefore, a critical test of how a comprehensively implemented and well-funded program of assisted outpatient treatment can perform. However, because New York’s program design is unique, these evaluation findings may not generalize to other states, especially where new service dollars are not available. This report addresses whether AOT can be effective and under what circumstances, not whether it will always be effective wherever or however implemented.”

If I understand this correctly what it is saying in psycholegese is that this study may well not generalize to any other AOT program in the country. In other words, unless you are also willing to put the money into it that New York did this study may show nothing that applies to you.  It matters, in other words, what you commit people to.  New York spent a lot of money in improving services.  If a person was committed to the same level of services as those in the Tennessee Behavioral Health Safety Net do the conclusions of the Duke study tell us what to expect.  The answer is no.

The mental health budget in Tennessee is being held together with spit and prayer. Can they add new money for improved services?  NO.  Can they maintain what they have now?  Probably not.  Maybe the people preaching AOT would have us divert the money for services from those that want them to those that dont.  I dont know.  But I know simply putting a coercive element into treatment is not enough. The Duke study certainly seems to me to be saying the same thing in a lot more fancy language.

Another question I had was if it was such a great thing why did not the whole state of New York implement it with passion?  The study seemed to point to two things.  First of all New York City had more money, a lot more.  More of the infrastructure was already in place.  There was less to invent, less to add and more capability to add what was needed.  Secondly, much of the rest of the state found out that voluntary approaches worked better.  “…One important difference among regions was the use of enhanced voluntary service ( EVS) agreements (sometimes referred to as “enhanced services”) in lieu of a formal AOT court order.  Again I was stunned.  In probably the strongest AOT state in the country most of the state doesnt use it.

Another paragraph did indicate some good things for AOT, but even it had a major qualification it it.  “…A key goal of the AOT Program is to motivate consumers to actively engage in treatment during and after their involvement with the program. We find that during the first six months on AOT, service engagement was comparable to service engagement of voluntary patients not on AOT. After 12 months or more on AOT, service engagement increased such that AOT recipients were judged to be more engaged than voluntary patients. This suggests that after 12 months or more, when combined with intensive services, AOT increases service engagement compared to voluntary treatment alone.

Stay with me a couple of minutes here.  Lets unpack this statement.  It is not clear what is exactly meant by “engagement” but lets leave that alone.  For the first six months there is no difference between those who want to get help and those forced to accept it.  (At least in terms of “engagement”)  Over 1 year those forced were more engaged that those who were voluntary.  Again aside from the question of what engaged means I have a question.  Perhaps the reason that the coerced were more engaged after 1 year is that treatment with those who are voluntary is more effective and they are phasing out of treatment quicker.  In Tennessee intensive outpatient treatment rarely lasts for anyone longer than 4-6 weeks and anyone who still needs it after one year is probably a failure in treatment and not a success.  You can beat a horse to water.  You can beat a horse to drink.  But what if he’s not thirsty.  Wont you just make him sick.

The biggest qualification is in one phrase, “…when combined with intensive services…”  Again it matters what you commit them to.  The conclusion I cant help but draw from all this is better services work better than poor services, rather you are forced or not and everything works a lot better if you voluntarily seek help.

This question is asked a little bit later in the study.  Their conclusion is that they dont know.  “In the first several years of the AOT Program, between 1999 and 2003, preference for intensive case management services was given to AOT cases, a finding corroborated by our key stakeholder interviews. This meant that in the first several years of the AOT Program, non- AOT recipients were less likely to receive intensive case management services than their AOT counterparts, especially outside of New York City. …..Because the new service capacity created during the implementation of the AOT Program is now fully utilized, competition for services in the near future may intensify, with unknown effects on AOT relative to non- AOT recipients.”  Translation:  During the initial years of AOT those on the AOT program had access to better services.  Now that has begun to change.  Everyone is having access to similiar services.  What does that mean?  Will voluntary use of good services lead to better results than coercion?  The investigators say they dont know.  Given that what does this study really say?  Basically that more services work better than less services.  I wonder if they thought we didnt already know that.  Anyone who has been trying to save the mental health budget in Tennessee already knows that.  Anyone who is a mental health consumer in Tennessee already knows that.

So where does all this lead.  The report ends where I began.  “Because the implementation of the AOT Program in New York was accompanied by an infusion of new services, it is impossible to generalize these findings to states where services do not simultaneously increase.”

These are just some thoughts off the top of my head.  I would love to hear from  you.  I truly believe that AOT is a mistake.  Much of what it claims to be and claims to do simply isnt true.  And for Tennessee it would be a disaster in a state already fighting to keep its mental health system from becoming the Titanic.

 

20000 a year

The Tennessee Department of Mental Health deserves a lot of credit. They have just finished a report on the feasibility of Assisted Outpatient Treatment in Tennessee. They have researched AOT in neighboring states and New York and reported the facts as they have found them. The report steers away from the emotional appeals that so often mark this issue. There is no argument by anecdote. It is a good report that deserves a lot more readership than it probably will get. It basically says AOT MIGHT reduce hospitalization BUT:

1. Start-up costs are over 3 million dollars. That is without the provison of any new services….without any new services. They anticipate serving 150 people the first year. If my math is correct that is about 20,000 dollars a person. Put that in this perspective. If you are without insurance and on the behavioral health safety net you receive a skeletal package of services that cost the state 750 dollars a year. The same person who refuses services and it committed to AOT will, if this becomes law, cost the state 20,000 dollars a year. Does anybody but me see a problem with this line of reasoning?

2. There is not 3 million dollars laying around to start this program. The report indicates, if approved, it will have to be funded by eliminating programs that already exists. So AOT would live by making an already resource poor system even poorer. In effect it will create its own clientele.

3. And if you somehow found 3 million dollars why would you not use it to beef up existing services so less people might fall through the cracks? Seems like a better way to address the issue to begin with.

4. They anticipate as many as 400 attempted commitments in the first year. They only believe 150 will be accepted as valid. That means that over 50 percent will be attempts by angry family members to control the decisions someone is making about their own life. But each one of these efforts must be paid for. The legal cost for representation and other costs will be over 9 thousand dollars. For many that would come out of the state indigent defense fund that is already stretched to busting.

5. There is little or no evidence that it will even help, particularly without the massive infusion of new services. In New York it is used primarily as a tool for aftercare planning for people leaving the hospital. Tennessee already has a program like that called Mandatory Outpatient Treatment. It is little used and not very effective. Why in the world duplicate something that already doesnt work under a different name?

6. Providers by and large seem to want nothing to do with it. It gives them a lot more liability. All of them know that working with people under coercion doesnt work. People being coerced tend to be more disruptive and the chances for violent episodes go way up. If providers dont buy in there is no program. Already many of them dont buy into MOT and there is no real evidence to believe this will be any better. You can commit people perhaps but you cant comitt providers. They have a choice.

7. They could find no clear evidence of any studies that even addressed the question of the effectiveness of AOT before hospitalization. Most of the studies, from what they could see, where about states where it was basically an aftercare plan. Assisted Outpatient Treatment in Tennessee is a lousy idea. It costs way too much for too little results and will cause many more problems than it could every solve. At its worst it will only help to further bankrupt a system already running on fumes. There are just too many reasons to say no.

But there is another even more issue. Should we have such a system? Do we want coercion to be the cornerstone of the mental health system in the state of Tennessee. Too many people I know have experienced a system overburdened and underresourced and have no faith or expectation it will help them. When the system doesnt work does forcing someone to be part of it really somehow magically mean it is going to work now? I recently heard Doug Varney the comissioner of the Tennessee Department of Mental Health speak about the trauma that commitment played in the lives of people. He clearly understood it could be a life changing tragic experience that scarred people forever. He counseled caution. I think he is right. We can do better. I hope AOT is never part of the mental health system in Tennessee

A new rationale

Tennessee has 2 new bills filed for the implementation of Assisted Outpatient Treatment in Tennessee. One of them has been filed by Senator Doug Overby who is my state senator.  I know him as a good and honorable man.  In this instance though I think he is tragically wrong.

Over the last months there has been a steady stream of sophisticated messages put out trying to convince Tennesseans of what a good idea AOT  is and how many problems it solves. Many of them seem to be courtesy of the folks at the Treatment Advocacy Center who would have us believe AOT is the best thing since sliced bread and the answer to every mental health issue. Every tragedy from Tuscon on has been pointed out as proof of the need for us to have the ability to commit dangerous people to mandatory outpatient treatment. The scare card has been played often and played hard. No mention is made of the fact that no professional worth his salt is going to make a serious argument that outpatient anything is going to make a difference with a really dangerous person. As one mental health professional told me, “By then the cow is already out of the barn….”

The other missing fact is that for the most part the mentally ill are not as violent as the “normal” population. They are much more likely to be hurt than to be the ones doing the hurting. Study after study after study has shown this. What does correlate with violence is age (being young), gender (being male), and alcohol abuse. So far no one is trying to commit the young until they get old enough to know better.

The other story we hear is of the plague of mentally ill who dont know they are mentally ill. Without question there are some people who are delusional and totally lacking insight into their problems. There are plenty of “normal” people that this could also be a description of.   There are some people that nothing seems to have worked for. And there are parents worried to death what to do with their adult children with serious mental health issues. Those worries are real and often of considerable substance. The people from TAC would have you believe that they have come to rescue these folks who nobody else seems to hear or acknowledge.

I have written often about AOT and have criticized it on a couple of main grounds.

  • It matters what you commit people to. The mental health system is shrinking steadily under the pressure of financial pressures of the last couple of years.  Particularly if you live in small town or rural areas and have mental health issues you will find yourself hard pressed to find adequate services to meet your needs.  If you find services normally the waiting lists are so long you will find yourself hard pressed to access them in any kind of timely manner.  I live in a small town.  Mental health treatment here is a 45 minute outpatient appointment every 2-3 weeks along with 15 minutes with a psychiatrist every 2-3 months.  It doesnt matter what you have done or what you need.  There is nothing else to commit them to.  And if in any sense of the word you are truly “commitable” because of meeting some serious criteria this is no where close to what you need in services.  It is an empty gesture.
  • We cant afford it. Last year they tried to pass an AOT bill and had to drop it because its “exhorbitant” cost.  The cost was $800,000 for a bill that included no provision of new services and only made provisions to serve 30 people.  I sat in a meeting yesterday and listened to them talk about the likelihood of cuts to mental health services that will affect the lives of literally thousands of people.  Somehow something that costs $26,000 per person served just seems an ill timed adventure.  (By the way I thought the $800,000 totally underestimated what the real costs would be.)

But all of this is really an introduction to what I really wanted to say.  Recently a top executive at the TAC wrote Tennessee supporters about a new approach to justifying AOT.

  • He says that the previous bill was sunk by a large cost.  These bills he says have no large fiscal note attached.  First of all they have no fiscal note because the department of mental health hasnt done one. To imply it doesnt cost much says we know something we simply dont know.  Again the previous note included no new services.  It amounted to the state paying for services for 30 indigent people and hiring 3 case managers.  From what I understand this bill also says the state must pay for indigent costs.  I think the number of 30 is incredibly optimistic.  I do not see how the bill is going to get below the $800,000 that sunk it before.  Listen to what one of the bills describes as the services that someone can be committed to and tell me what you think about cost.  “…case management services or community treatment team services to provide care coordination and may include any of the following: medication, periodic blood tests or urinalysis to determine compliance with prescribed medications; individual and group therapy; day or partial day programing; educational and vocational training or activities; alcohol or substance abuse treatment……(only a partial list)”  I am told day treatment is $175 a day.  All substance abuse treatment around here for people without insurance requires a 2-4 month wait until you get a spot.   Whatever else it turns out to be cheap is not it.
  • He admits that AOT does not solve the resource problem.  This is very much unlike some earlier things I read from other people who promised that AOT would give access to treatment to people who previously had never had any.
  • “It is true that overcoming the insight problem is a hollow victory if there are no community services available. …”  He says it better than I have ever said it.  He does go on to say that does mean you should force people with “no insight” into what ever services available to them.  But in that one previous sentence he gives clear recognition that even the people from TAC realize the fundamental problem with their idea.
  • Finally he states what he believes the AOT bills do actually do.  It gives courts the power to force people into what ever services are available in their area.  And that is honest.  That is all it does.  It doesnt talk about options like mental health courts.  It doesnt talk about the other reasons that people do not pursue treatment.  It does not address the miseries so many people have experienced trying to find the “right” medication.  And it very plainly says, “I know the mental health system has holes on top of holes and cracks on top of cracks but lets not worry to much with that.”

The real question is rather or not in this time of extreme need whether or not “hollow victories” are worth the money we pay for them or rather or not we need to turn our attention to more substantial needs.  Think about that when you speak next to your legislator.

Anosognosia

One of the shadier concepts in psychiatry in that of anosognosia.  It basically means that because you have mental illness that you have suffered some kind of brain damage that makes you unable to realize that you are ill.  It is remarkable notion that is used most frequently by people like the Treatment Advocacy Center to justify that the mentally ill need to be forced to accept treatment for their own good because they dont even know they have an illness.  “Treatment” in the way they use it is basically medication and/or hospitalization.  By appealing to the concept of anosognosia these folks try to annul any criticism of psychiatric intervention by those who have endured it as being the result of distorted thinking or personal blindness on their part.  In its most extreme variations it pictures psychiatrists in terms most people  use only for God.

The conception of personal blindness as something peculiar to people with “mental illness” functions  to justify taking away someones’s rights to make decisions about their own life and through linguistic sleight of hand to make interventions which are frequently cruel, frequently dangerous, often demeaning seem to be something done for “their own good.”

There is ample evidence that personal blindness can be a major problem,  but the clear evidence shows it is a function of being a human being and not ahuman being  with mental illness.  Social psychologists have been studying “the confirmation bias” since the 1960″s.  Wikipedia defines it as “a tendency for people to favor information that confirms their preconceptions  or hypothess regardless of whether or not the information is true.”   The article continues, “The biases appear in particular fo remotionally significant issues and for established beliefs.”  And finally, “Confirmation biases contribute to overconfidence in personal beliefs and can maintain or strengthen beliefs in the face of contrary evidence.  Hence they can lead to poor decisions, especially in organizational, scientific, militiary, political and social contexts.”  50 years of social psychology research clearly prove that personal blindness (confirmation bias) is a normal, regular, predictable characteristic of “normal” human beings that influence all areas of human life including “scientific” endeavors.

When I listen to people talk in a serious fashion about how science has proved that 50% of the mentally ill have anosognosia I cant help but wonder about the effect of the confirmation bias.  I think that maybe nobody is as blind as those who continue to preach about how  blind  everyone else is.  How else can educated, intelligient human beings talk with blind faith about the glories of psychotropic medication when more and more evidence is piling up each day about the dangers they present.  How else can educated, intelligent human beings seem to be unable to see the trauma of psychiatric hospitalization for so many people.  How can educated, intelligient people see nothing but “what is done for their own good” and fail to see the harm and needless cruelty that so often characterizes the system?  Perhaps scientific research has as much to say about the scientists as it does about anybody else.  From the Wikipedia article again, “Experiments have repeatedly found that people tend to test hypotheses in a one sided way, by searching for evidence consistent with the hypotheses that hold at a given time.”

In my experience psychiatrists, at least in the public mental health system, really dont control all that much.  The psychiatric vision- the conception of what is real and what is not real- does however.  It is that paradigm that could really use some good therapy.  If you read through the research about the confirmation bias and insert the term psychiatric vision as the subject it is really scary how accurate the description seems. 

The research seems to indicate that those with mental health diagnosis are not necessarily less realistic than those without a diagnosis.  One author of a recent book, Dr. Nassir Ghaemi in “A First Rate Madness” says that point blank.  He points out several historical leaders who because they were depressed were more realistic rather than less.  They didnt have the tendency to blindly accept what made them look good or feel good as more “normal” leaders did.  His book is very controversial but the points he raises are worth thinking about.

I keep coming back to a talk I heard Robert Whitaker make recently about the need for an honest mental health system.  What if it was not about who was right or wrong?  What if it was not about defending your turf from others trying to say that your version of the truth really wasn’t that true?  What if it was about what helps?  Would that not really be a revolution that could benefit all of us?

When I hear people talk about recovery sometimes their visions are not real clearly articulated, but what is always clear is their bottom line.  What is important is what helps….what improves the qualityof life.  And once you find out what works do it and continue to do it and when you figure out things that help more do them with even more passion.  Is not the mental health system in the end supposed to be about how we help those in distress and pain who need some help to live the kind of life and have the same kind of opportunities that all human beings should have.

 

An open letter to Dr. Torrey

Dear Dr. Torrey

I have recently become involved in a very small way with an effort to stop Assisted Outpatient Treatment from coming to Tennessee.  I dont know exactly how to get this letter to you, but I believe some people associated with the Treatment Advocacy Center do read this blog and perhaps they will pass it on to you.

The mental health system in Tennessee is hanging by a thread.  In the last 3 years there have been 46.7 million dollars in recurrent funds cut.  There were 32 million dollars in one time funding restored this past year.  Most of the restorations were for core services that decisively affected people’s ability to live successfully in their community.  Everyone of those dollars will have to be refought this next year.  On top of that we have already learned that another 5 million dollars in recurrent funds will be cut this next year.  Karen Easter, whom I am sure you know of, asked “Where is the Tennessee mental health system infrastructure?”  We are asking the same question.

In Tennessee the major question is not how do you get help for those who for whatever reason dont want it.  The major overriding question of questions is how do you find help– real help– for people who want it and want it badly.  Thousands of people in Tennessee on what is called the behavioral health safety net.  They have no insurance and exist below the poverty level.  Mental health care for them is a counseling appointment every 2 weeks, medication management, and minimal case management.  This is the baseline of acceptable care.  It is what it means to be mentally ill in Tennessee.

It is not because people are not trying.  There has been a veritable army of advocates who have fought to maintain the system where it is.  It could be much worse. The people in the Dept of Mental Health have made super human efforts to keep services constant despite steadily shrinking resources.  But people, many, many people do not get what they need to have a fair chance at leading a quality life.

You are right when you say it is a national disgrace that our jails have become our largest mental health centers.  You are wrong, incredibly wrong when you try to imply that this crisis is being driven by people who deny their problems and issues and reject the very help being offered them.  I have been involved in advocacy for several years now and have literally met thousands of people with substantial mental health issues during that time.  Almost without exception every person I have met knows how and to what extent their life is not as they would want it to be.  Many of them have tasted first hand the inadequacies of the system and simply believe that a shrinking system doesnt offer much for their growing needs.  Many of them have went through torture trying to find a medication that makes life even palatable.

I never hear you talk in any real way about what problems medication brings with it for so many people.  I know people whose health has been dramatically and irreversibly affected by medication they were told would solve all their problems.  Every day brings new research that shows more and more that medication is not the panacea it was once thought to be.  Do you not read any of this?  Have you simply chosen to ignore it?  I dont understand how you can say under penalty of law that someone has to take a medication that may give them diabetes, heart conditions or lord knows what else.  I dont see how anyone in good conscience can say that.  I just dont.

You talk about people being blind to their problems.  Do you not have some personal blindness of your own?  How can people be accused of not accepting their illness when we cant even figure out how to accurately diagnose people?  By the time many people just give up on the system they have been exposed to a dizzying array of diagnosis and medications and simply no longer know who they can trust or if they can trust anyone at all.

Why are you so insistent that psychiatric hospitalization is the answer.  I read you think there should be at least 50 psychiatric beds per 100,000 people.  Tennessee I think has about 16.  To follow your recommendations would put our state into an economic depression.  At best hospitals offer a short term safe place for people in a dangerous space.  They offer no real treatment.  Often the staff there is the least educated and least able to deal with serious problems.  Virtually everyone I know has left the hospital scarred and feeling disempowered.  And more than one has told me they will die before they go back.  The days of the huge state hospitals were not the golden days regardless of what you say.

I have gotten astray and apologize for that.  Dr. Torrey Tennessee simply cant afford you.  The estimates I have seen say your plan will cost at least $26,000 per person.  I read how they came up with that estimate and to me it seems a horrible underestimate.  They are saying at minimium $800,000 but that is based on serving only 30 people and no one, least of all you, intends for this to be a 30 person program.  The money can only come from one place- the people who already get totally inadequate care.  What you commit people to does matter and it would seem the height of foolishness to pass a law without funding it.  If you and TAC get their way you will hurt far more than 30 people. It all seems so wrong, but somehow I get the feeling that is not going to matter.  You are a true believer on a crusade and somehow I wonder how much facts are likely to get in your way.

I believe in talking openly and honestly to people.  I meant no personal attack by anything I have said.  I really hope you do get ahold of this letter.  I really hope you respond.  If you ever do come to Tennessee I would love to introduce you to some people who struggle everyday of their lives with an illness that attacks them daily and a system that is either well meaning and ineffectual or simply deaf to their cries.

Their is much more to say, but that would take me far astray and I really dont want to do that.  I think most of what you say is tragically mistaken.  My abiding hope and prayer is that your vision does not signal a great tragedy for so many people in Tennessee who deserve so much more.


Post a comment
Write a comment: