Mental Illness Requires Care not Cure | Trauma Informed Systems
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Mental Illness Requires Care not Cure | Trauma Informed Systems
Part of the effort of the mental health system should be to help create safer communities for those it serves. Tennessee like every other state in this country has its share of horror stories about the way people with mental health issues are dealt with by the police, It is also a major issue for family members. There are a million stories with one message. Make it safe. The police should not be dangerous for people with mental health issues and in way too many communities they are.
CIT (Crisis intevervention training) is a proven method to do just that. In some places like Chattanooga it is widely taught and used. In other places, particularly rural and small towns it is not.
My suggestion is to create more Chattanooga’s (they are by no stretch of the imagination the only Tennessee community finding out CIT makes a big difference). In particular reach out to small towns and rural communities where CIT training is most likely to be sparse if not non existent.
One way to do that would create a capacity by the state to provide CIT training for those communities that might want to access it. In New York, I believe, they state CIT centers of excellence that provide training to local communities. I think federal grants are available for things like this and I cant think of many wiser investments.
Police should not be a danger to anyone with mental health issues in any community. Time for a change.
This is the first in a series of possible Murphy questions to ask your representative.
This question should be tailored based on rather or not your rep is pro or con on Murphy. There are a lot of different points you can emphasize depending on your approach.
Everyone agrees that large numbers of people are inadequately served by the current system. A report from The Treatment Advocacy Center says for example over 300,000 people with mental illness are in jail basically because of that illness. The Murphy Bill touts Assisted Outpatient Treatment as a major solution to address this problem. Yet New York state, which has the largest, best financed and most supported AOT program in the country by far, only serves 2000 in a mental health system that serves over 675,000. In most states the program is basically unused or lies fallow. How is a program, that in its biggest incarnation, only serves 1/3 of 1% supposed to act as a major reform of the mental health system? How is that even reasonable to believe? Does the Murphy Bill, even if you ignore all the other criticisms of it even begin to deliver what it promises? Dont we need something better….Something more….
From the archives
Some observations from the Murphy Bill experience:
You cannot little tent major mental health reform. An approach that dismisses those who disagree with you as lacking integrity, good sense, and commitment will alienate more people than it connects with. You may get the satisfaction of the people who agree with you anyway telling you how smart you are but little else. Major initiatives are coalitions of people who coalesce around an interest or purpose but may maintain their differences on a whole host of other issues.
Related to the above. The most important predictor of success is not how many people passionately agree with you, but how many people passionately disagree with you.
Respect the contributions of everyone you hope to connect with or you will not stay connected long.
Trust is everything. Value transparency. I have had many people tell me that when they slipped AOT in the Medicare bill the Murphy Bill died.
Dont tell people you have all the answers. Tell them you need them to help find the answers.
Be careful what you claim. Dont tell people that all the problems, all the issues will be solved by this bill. Everyone knows that isnt true and they start to wonder about you if it looks like you really believe it.
Remember when you tell people what you know you are showing them what you dont.
Solutions based on blaming dont go very far. In the first place they dont solve anything. In the second you eventually need the support of the people you are blaming.
Dont coronate a king. People work harder in a democracy.
Dont put yourself in the service of someone elses agenda. It was just hard to tell when Murphy started and Torrey ended.
Know you are selling a process and not a product. People will never buy into the product if they think your process sucks.
Avoid even the slightest hint of opportunism. Murphy made himself look cheap by the way he dealt with Isle Vista.
Treat the subject as important as your bill. The important thing about Murphy was that people were talking about making the mental health system better. The worst result of Murphy is not whether his bill passes, but if the experience leads people to stop talking about making it better.
Commissioner Doug Varney of the Tennessee Dept of Mental Health and Substance Abuse visited Maryville last night as part of our speaker series. He had many important things to say.
He talked about closing the state hospital in Knoxville a couple of years ago. They were beginning to get some data he could share. He said the funds that it had taken to run the hospital had been reinvested in community care and that 10 times more people received services in the community than had ever received services in the hospital. He said that when they looked at the 50 long term patients left when they started to close the doors their biggest commonality was not any “mental illness” that they suffered from. It was that they were poor and had no where to go. Placements were found and in the 2 and a half years since the hospital closed he said only 2 have been re-hospitalized. They have found life they would have never found if the hospital had remained open.
He talked about committal. He had problems with the idea that everyone had to be handcuffed and put in a police car. He thought it was very unnecessary and unnecessarily traumatic to someone already being traumatized. He has sheperded a bill through the legislature with the support of NAMI and many other organizations called the “Transportation with dignity” act that allows family members in many instances to transport. The bill has passed but little has happened as doctor lawyers still are arguing over “liability”. He could use your help. If you think this is a good idea contact him at the Dept of Mental Health and ask what you can do. Please contact him.
We talked about Maryville and what could happen to make this a better community. We talked about a “recovery court” that would keep people with mental health issues out of jail and help them to find help. He committed to doing what he could do to make that a reality in Maryville.
We also talked about the police and the importance of CIT training in this community. He also pledged his help there.
He answered questions both from family and consumers. He talked about the faith he had in the reality of recovery and that better life could be found. He talked about his hope of us becoming communities of recovery that went past any program or set of services. More than anything else he seemed to believe that people being good people to each other mattered.
I thought the night mattered.
Thanks for coming Commissioner.
Without intending to or even being aware we are doing it we have given the Murphy Bill a free ride on an extremely critical core question: leaving aside for a moment all questions of values and moral issues the bill touches upon– can it work. Are the solutions they propose of a magnitude and type likely to effectively address the issues they cite on anywhere close to the level they say those issues need to be dealt with? The answer I believe is resoundly no. The Murphy Bill is a fraud. It is a bridge in Brooklyn or swamp land in Arizona being sold to people desperate for a solution.
The argument on Murphy in one sense has been very simple. It has been an arguments about morals and doing the right thing. Murphy, Torrey, and Jaffe have framed their bill as a valiant uphill battle against overwhelming odds to do the right thing for people who cant help themselves and need help very badly. The battle against the Murphy Bill has also been about doing the right thing: respecting people’s rights to make their own choice in life and saving people from the specter of coercive treatment. What you conclude depends on what you think the right thing is.
But what if it was about more than that. What if it was about what works, what really solves problems and makes lives better. What if it was just a discussion based on honesty and not protecting or advancing turf or power or status or whatever. What if the question was, “Does the vehicle you have designed actually work. Can it do what you say it does? Can it do what needs to be done?
A major Murphy issue is the travesty of “mental illness” being criminalized… I think he is right. It is an atrocity. Something close to 300,000 or so people are in jails or prisons who have some sort of mental health issues or diagnosis severely impacting their life. His solution is two fold if I understand him correctly. He touts assisted outpatient treatment (aot) as a major part of the solution. He says the problem is that they dont know they have a mental illness and they need to go to treatment rather they want to or not. If that happens not nearly so many people with mental illness will commit crimes or be put in jail or so he seems to believe. Before anyone makes a remark about the simple minded and naive faith he has in the efficacy of outpatient treatment lets look at a couple of other variables.
Remember the number 300,000. That is an important number. The New York state mental health system for example serves about 675,000 people. A little more than twice as many as are in prison. The New York state mental health system is also the holy site of AOT. It is the largest program and according to the people who believe in AOT what they believe is the model for how it should be done. But this largest, best done model of AOT only serves about 2000 people– about 1/3 of 1%. It spends about $32,000,000 a year. If you assume that indeed New York is indeed how it should be done and it really AOT at its optimum and should serve as the model of how AOT can keep people out of jail you are looking at a yearly cost of $4,800,000,000 (billion with a b) if you use AOT on all 300,000 or so residents of our correctional system to save them from themselves. Obviously you may not have to use AOT on 100% of the people…. Say you only needed to do it on 10% of the correctional population. The cost then would be $960,000,000 (million with an m). What happens to the idea of AOT to “cost effective and saving money.” What states could even begin to pay for their portions of this bill. The federal grants attached to the law dont even begin to foot the bill. That money must come from somewhere and if it was the law then money would likely have to be taken from community services which would create more people who get into trouble who need AOT which needs more money which creates more people in trouble etc. etc. etc.
Obviously I have created a straw man and the truth is much more complex than I described it here. But two important points need to be considered. To blindly assume a program that serves 1/3 of 1% of a population in its biggest incarnation can be increased to serve about 50% of that population is a really big assumption. Secondly the question of cost is a real one with real impacts. Buying a car may be a real bargain. Buying a thousand cars at the same price may not be the same bargain.
Making AOT in New York the measure of all things as Murphy, Torrey, and Jaffe basically do is also a strawman. AOT is not a new thing. It is in 44 states. In most of those states it lays unused, and basically irrelevant to the operation of the wider system.
On many different levels (ignoring the very real moral questions) AOT is simply not what it is advertised to be. The biggest reason is that the problem is not what it says it is. There are not anosognosiacs running around unattended everywhere. Again if you accept the Murphy notions as truth and do the math you just get nonsense. If about 4% of the population is seriously mentally ill and about 50% of them have anosognosia as Murphy claims then about 370,000 people in New York have anosognosia. AOT in New York deals with 2000 (granting the rather large assumption that all of them have anosognosia). There are 368000 anosognosiacs missing. Come on. Does anyone really drink this kool aid?
AOT (even if you believe in it and worship it and think it is the best thing since sliced bread) is a pop-gun trying to bring down thousands of herds of elephants. It just doesnt deliver. Way too little bang for way too many bucks.
Whatever it is “a fundamental reform of a broken system” is not it.
Murphy’s other fundamental reform of a broken system is psychiatric hospitalizations. It is a little like a tank commander saying the problem with the army is that there is not enough horse calvary. The time is past. The ship is sailed.
If you listen to Murphy talk sometimes it seems like what he is saying is illegal, criminal activity is due to a defiency in psychiatric hospitalization. He speaks romantically about the thrill of “evidence based practices” and then touts perhaps the least evidence based practice in the world. Perhaps there is a place for psychiatric hospitals for crisis stabilization (although many people would even disagree with that) but that is in no way a fundamental reform of a broken system.
And again remember the 300000 figure. A hospital bed in Tennessee costs can depending on the level of care cost as much as $350,000 a year. Care to guess how many new beds they are going to open to serve the 300,000 (even if there is no IMD exclusion). Try zero.
The claims of the Murphy Bill are not examined nearly close enough. Too often we lose ourselves in outrage and dont take enough time to look closely and see it just isnt very good. It isnt a fundamental reform of a broken anything. His gun makes a lot of noise. It just doesnt have any bullets.
In times desperate
When time has slowed
And moments are thick
And air not breathable
Only heavy and still
Be not alone
Be not marooned
In far off places
Where people have
Never been seen or
Heard or felt
Know that song
Still has melody
And words to be sung
That life is more than noise
And living more than clatter
And walls closing tighter
In desperate times
Plant hope and water
And weed it till
Fruit and harvest
Clouds only cover the sun
It has not gone away
And if you need a hug
Come this way
For I need one too
In recent months I have learned a lot more about desperation. It is the most human of emotions, but yet the most overlooked by many people who talk about mental health issues and “mental illness.” People can “have depression”, “have bipolar”, “have….”, but people dont have desperation. They are desperate.
When life is hard, when things are difficult and seem inescapably so, when much seems out of control and maybe even immune to control the dynamics of life change. Life becomes about being hurt and danger and trying to stay safe. Life becomes about trauma. The anticipation of the next bad thing captures your attention and narrows your focus. It leaves you hyper vigilant and in the end chronically fatigued. Life becomes about managing an ongoing sense of desperation. It becomes about not letting your anticipation of what might happen next rob you of any satisfaction with what is happening now.
People I know with mental health diagnosis tell me that others seldom seem to understand the desperation with which they frequently live. It is not just “mental illness” but the trauma of “mental illness.” It is not just the circumstances of a difficult life, but the trauma of those circumstances.
When things were at there worst for me the question that I hated far more than any other was for people to ask, “…how are you doing….” It left me feeling like I had to translate something I didnt know how to translate. And it left me feeling like I had somehow injured them when I tried.
Often times we listen to others tell about their problems, but it is so much more raw and painful when they share their desperation. We tell ourselves they are over reacting and need to adopt a more positive attitude and need to stop distorting things, but I wonder sometimes if all of that is not more about us and less about them. I dont know why and maybe I am wrong. Maybe the desperation of others reminds us of our own. Maybe it makes us feel inadequate and helpless. Maybe we just dont really know what to say or to do.
But desperate people dont either. I didnt and I dont. For me it has been slowly learning and accepting the idea that some things in my life leave me very desperate and may always do so. Desperation is not something I conquer as much as something I learn to live with. Some things are just bad. Millions of people know that in their own lives. Life is hard and anyone who doesnt know that is either lucky or blind.
Perhaps, and maybe this sounds strange, the answer is in perspective. The worse is no less worse for me, but the worse is not all there is. Part of the answer for desperation is finding a place for something else. Some things have changed for me. I will probably no longer live with my wife due to circumstances beyond our control. But some things have not changed. In fact, in some ways, we are closer than ever before.
The answer for me is not that things are not as bad as they feel. It is that it is still possible to feel other things. It is not in feeling like I havent loss what I have loss or that the threats in my life are not real. It is in knowing that there is still much much to gain.
Recently someone I know committed suicide. Everyone was shocked. I still am. No one saw it coming. I know I didnt. And looking back now the one thing that is abundantly clear is not just that he was depressed for a very long time. He was that. It is not just that he was unhappy for a very long time. He was that. It is that he lived a life of increasing desperation, a silent desperation perhaps, but to him a screaming desperation and no one knew. In his desperation was the loneliness and isolation that in the end really led to him dying.
The greatest risk of desperation is isolation. Reach out to someone today. Let someone reach out to you. Things are sometimes very very hard. One friend half joking told me life was “nothing but beans and hard times.” But much is better with each other.
There are assisted outpatient programs in almost every state in the union and in most of these states those programs are unused, inconsequential and irrelevant to the operation of the wider system. Many times these programs were set up with massive legislative approval and public support. Yet each state had the testimony of previous states to look at and seldom did. For many people who self identified as being anti-psychiatry or psychiatric survivors the fight against AOT was perhaps their primary battle. Yet as far as I know they lost every single battle they fought. The Treatment Advocacy Center, the primary proponents of AOT won every battle they fought and we have AOT in virtually every state.
There is not a lot of professional support for AOT. People who actually work in the field (not those who “study” it) will tell you that involuntary participation in treatment is normally fatal to any prospects of success. There is tons of research in the field of social psychology that talks about the very real limits of coercion as a change strategy. For most people it is just common sense. There is a difference between people who are forced to do something and people who choose to do it. There is a study which purports to show AOT is the best thing since sliced bread out of New York, but since New York pours at least $32,000,000 a year into the program, the relevance of it to other states is at best questionable.
Now there is a major push to federalize the AOT program. A program that in its biggest incarnation (New York) serves 1/3 of 1% of those served by the mental health system is being pushed as the answer to virtually everything. And it came close to becoming law. The Murphy Bill is not dead. In the next term the new Murphy Bill will once again join the conversation.
Behind it all is the Treatment Advocacy Center. Regardless of what you believe about their ideas and theories their political skills are real, proven and effective. They know how to influence legislation. They know how to turn out the personal stories of people in favor of legislation. One of their chief spokesman is an advertising man and yet his word is accepted as gospel, his status as “mental health expert” is sacred and their pieces are printed in major newspapers and magazines without question or critical comment.
Common sense tells me they cant win. But yet they have won at every turn.
The consumer movement has been splintered and fractured and abysmally ineffective. They for the most part have been unable to resolve arguments amongst themselves let alone provide any kind of real opposition to the TAC people. In fact you could make the argument that TAC relies on the impotence of those who oppose them to get their laws passed. The consumer/survivor/ whatever term you want to put in there movement has become the fall guys, the “boogeymen” of every TAC campaign. Witness the Murphy campaign. They have seriously tried to sell the idea that “anti-psychiatry” forces control the mental health system and their bill is a valiant effort to save it from the oppression of those who dominate it and deny services to the “severely mentally ill.” We may know it is pure nonsense but an amazing amount of people have drank the kool aid.
If we dont become effectively political we will leave the argument to those that are: the Treatment Advocacy Center. There will be more than a Murphy Bill. There will be a Murphy Law.
In recent weeks there has been a shift in the conversation which holds promise of real fruit. A Stop the Murphy Bill PAC has been formed. Its goal is for the ideals, values and goals of the people who stand against the strategies and methods of the Treatment Advocacy Center to become politically effective. It has talked about the idea that the best way to effect legislation is to effect who is elected. It is in its infancy right now but I applaud its intent and effort. It has more than a little chance of making a difference. I have joined the Facebook group of the PAC and hope I can be part of the move to political effectiveness.
This is so important. If we dont do what is necessary to win, if we are incapable of pulling together and working to make ours an effective political voice that goes past blog posts and fancy speeches, we will lose. Again the track record of the Treatment Advocacy Center is clear. We have lost in the past at every turn. If we just do the same old things we will lose again.
If there is to be qualitative changes we must change what we do and hang together and work together and never give up. It is time to have clear focus on who the real enemies are and it is not the people who share your concerns however you question their methods.. The Treatment Advocacy Center is not playing. They intend to win.
It is on us.
On murphy…. from the archives
Originally posted on Hopeworks Community:
The core of the solution to change the mental health system according to Representative Murphy resides in a few core ideas. Most of those ideas have relevance to Tennessee directly. Will they make the difference he says??
1. Increase the use of psychiatric hospital beds.
A state hospital bed in Tennessee costs, depending on the level of care between $145,000 and $340,000 a year. To put in a Tennessee perspective the peer support centers in Tennessee serve about 3500 people a day. Most, if not all of them, would qualify in Murphy terms, as “severely mentally ill”. They cost $4.5 million. Their biggest success is in keeping people out of psychiatric hospitals. Over 90% report a marked decrease in psychiatric hospitalization. To add 12 beds for the highest level of care would basically equal the budget of a program that serves 3500 a day and prevents people from needing hospitalization. …
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On murphy …from the archives
Originally posted on Hopeworks Community:
Rep. Murphy has not went gently into the good night. Dr. Torrey will never go gently into the good night. They are trying it sounds like to provide cpr to their bill. Rather the things that didnt work the first time will work on second effort is anyone’s guess. I think sometimes it is really hard for annointed national spokesmen to realize they are not and never were.
But this post is not about that. It is about a fundamental misunderstanding of the American mental health system that was part of the reason that may have doomed the Murphy Bill from the start.
Murphy seemed to believe we were doing far too much for too many. He thought people who were doing better in the system were robbing those who were doing poorly of help and resources. And he thought if resources were properly allocated things would be okay. Using…
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On murphy….from the archives
Originally posted on Hopeworks Community:
You say that it is morally reprehensible for anyone to help a patient question the medical advice a professional gives him.
Let me tell you about reprehensible.
Where I live bipolar disorder is as much a function of the doctor you go to as the symptoms you display. One doctor basically believes everyone is bipolar. He says that the fact he consults and does “education” for a pharmaceutical company has nothing to do with it. Another talks about people “feeling bipolar” to him. They never seem to have the right symptoms for the right period of time but still…. The psychiatrist at the psychiatric unit basically doesnt believe anyone is bipolar. He thinks it is way over diagnosed and way over-dramatized. He normally cures people from bipolar really fast. He just tells them they dont have it. Considering they deal in “medical science” that seems reprehensible to me. How do…
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Myths about the Helping Families in Mental Health Crisis Act (HR 3717)
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The post above was written by DJ Jaffe of mental illness policy.org. Jaffe is an interesting person. It is his answer to the critics of the Murphy Bill. Jaffe is best I can understand an advertising man by training. His primary qualification as a mental health expert is that he is an advertising man. He sells things and does so superbly.
He is a relentless advocate for Murphy and Torrey, basically functioning as the bad cop of the trio. He has absolutely no hesitation or reluctance to bash the character or motivation of anyone who disagrees with him or Dr. Torrey and does so passionately and aggressively. Before he became an established “mental health expert” his claim to fame was the piece he wrote to family members that if they called the police on a mentally ill family member to make sure all the furniture was turned over before the police got there where they were sure to get the “right impression.” I dont know if he still favors turning over the furniture or if he has moved past that.
Jaffe starts off, ” Groups representing high functioning individuals with a ‘lived-experience’ and other recipients of SAMHSA funds have made numerous claims about The Helping Families in Mental Health Crisis Act (HR 3717) that are inconsistent with the facts. The following compares the claims with the facts….”
Jaffe lumps critics into two groups: “high functioning with ‘lived experience’ and those who have a stake in continued Samsha funding. There are so many problems with this it is hard to know where to start.
One of the biggest problems with Murphy and company is their belief that no one can have an honest disagreement with them. Anyone who disagrees must have a distorted perception or ulterior motive. This has left them severely deficient in trying to build support from people who do not totally agree with them and is one of the big reasons that they did not succeed in their first go around. Instead of connecting with people they try to conquer them and seem unable to realize that the solution to alienating those they seek support from is not to alienate them farther.
Jaffe dismisses critics as “high functioning with lived experience.” He doesnt seem to understand that many of the people most critical of Murphy have the most serious of diagnosis, a history of hospitalization, multiple suicide attempts etc. They have lived what he is selling and found it not the path to health but the biggest stumbling block in the way.
The Murphy people coined a term: “worried well.” The most polite thing I can say about it is that it is one of the stupidest notions I have ever heard. It basically implies that the people who disagree with them have problems that are insignificant and they dont know where people with real problems are coming from. It is usually described as people who are very selfish and dont care about people really hurting. This is what Jaffe means by “high functioning with lived experience.” It displays a great consistency with the fundamental approach of the entire Murphy campaign: the best way to deal with people whose message differs from your own is to shoot the messenger. Only in Jaffe/Torrey terms does doing well in recovery mean you are out of touch with reality.
The people who are only trying to protect their samsha funding according to Jaffe are the organizations like Bazeldon and Mental Health America who for the most part have opposed Jaffe/Torrey for years. Again rely on smear and if you do it well enough perhaps you will never have to rely on argument. There are ton of other problems with his introduction, but in the interest of brevity I need to move on.
“HR3717 greatly promotes stigma and discrimination by its unfounded and damaging connection between mental illness and violence.”
HR 3717 does not make any claim that persons with mental illness are more violent. However, provisions of the bill have been proven to reduce violence by those with untreated serious mental illness. It is violence by this minority that stigmatizes the majority, so it can be expected HR 3717 will reduce stigma.”
The myth about the myth
Distortion battles lies that battles rationalization and I dont know which one wins out. This is playing word games. The bill may or may not link violence to mental illness but Torrey, Jaffe, and Murphy strongly do. In the last year I dont know if Rep. Murphy has missed one single violent tragedy to advertise his bill. Every time some one dies his first response is “This is proof that someone needs to pass my bill.” He has done it so often he is beginning to look very opportunistic and shallow.
The sentence about “violence by this minority that stigmatizes the majority…” seems so strange coming from him since the Treatment Advocacy Center for years has tried to do exactly that. When throwing stones it is always nice to make sure they ultimately dont come your way.
The notion that violence by a few is the ultimate cause of stigma is naive at best and willful blindness at worst. It is so much more than that and if that is all they can see people should be very careful about the agenda they are selling.
HR3717 virtually eliminates the main system of legal representation for Americans with psychiatric disabilities
The Protection and Advocacy for Individuals with Mental Illness (PAIMI) program was founded to improve the quality of care received by the most seriously ill. It now focuses on ‘freeing’ them from treatment and lobbying states to oppose policies that can help the most seriously ill (ex preservation of hospitals for those who need them. HR 3717 returns PAIMI to its original mission and reigns in their ability to use funds to lobby against treatment needed by some of the seriously ill.
The myth of the myth
I think most people define a lie as telling an untruth and knowing you are telling an untruth and still choosing to tell an untruth. By that criteria this one is a lie.
Paimi was not founded to improve the quality of care received by the most seriously ill. (personal disclosure. I am a member of the Paimi council in Tennessee) The phrase “now focuses on freeing them from treatment and lobbying states to oppose policies that can help the most seriously ill….” is simply not true. It is not even close to being true. Paimi protects peoples rights. In Tennessee like many other states the track record is of the successful exposure of abuses for many many people. It does not lobby the state for any changes in policy. It deals with individual issues period. My personal opinion is that if I was going to prescribe a policy like AOT with so much potential for the abuse of individual rights the last thing I would want to have is an organization in place that protects the rights of the most vulnerable. The overall message of Torrey/Jaffe/Murphy is that anyone who dissents from the program they have laid out is irresponsible, selfish, unprofessional and simply doesnt care about the plight of the severely mentally ill and their effort seems to be to try in many different ways to get them out of the way.
From everything I have been told this provision of the bill is one of several poison pills. I dont think that if some version of the bill does pass it will pass with this provision in it.
Note: Throughout his discussion of critics of the bill he talks about their stake in seeing it defeated. He passes over or glosses over the idea that the Treatment Advocacy Center is far from a disinterested party in this process.
The bill would amend HIPAA and erode privacy rights for people who have a mental health diagnosis and strip away privacy rights for Americans with psychiatric disabilities.
HIPAA and FERPA require doctors to keep parents in the dark absent a specific waiver by the mentally ill individual. Mentally ill individuals who “know” the FBI planted a transmitter in their head are unlikely to sign the waiver. Parents who are caregivers need the information about the diagnosis, treatment plan, medications and pending appointments of mentally ill loved ones so they can ensure they have prescriptions filled and transportation to appointments. HR 3717 writes very limited exclusions into HIPAA that allow parents who provide care out of love to get the same information paid caretakers already receive.
The myth about the myth
Always beware of arguments that start with the execution of straw men. Murphy is talking about far more than people “who know the fbi has implanted a transmitter in their head…..” Then he says all they want is “have the medications filled and transportation to appointments….” This aint what they are talking about.
People have rights. Inconvenient for those who would like to have power but they still have rights. And there already is an exclusion in Hippa. ” A health care provider or health plan may also share relevant information if you are not around or cannot give permission when a health care provider or plan representative believes, based on professional judgment, that sharing the information is in your best interest.”
Again there is a larger agenda at work here. Mr Jaffe and company believe in and push the value of coercive mental health care as the cure for much of what ails the mental health system. They wish to shut up organizations like Paimi that might stand in the way. With Hippa the goal is far more than making sure people get to appointments on time. It is to give family members the ability to force “loved ones” to accept treatment that they believe is not in their best interest.
Incentivize needless hospitalization and civil rights violations
The Institutes for Mental Disease (IMD) provision of Medicaid prevents states from receiving reimbursement for persons with mental illness who need care in a state psychiatric hospital. So states kick the seriously mentally ill out of hospitals. Many wind up incarcerated. Patrick Kennedy called the IMD Exclusion federally funded discrimination against the mentally ill since Medicaid reimburses for hospital care when the illness is any organ other than the brain. HR3717 makes small revisions in Medicaid so those who need hospital care are more likely to receive it. It does not require anyone to be hospitalized or gives states an incentive to hospitalize.
The myth about the myth
Again word games. Jaffe and crew have been very vocal about the fact that they believe the cure for people in jails is people in hospitals. This is not a minor part of their argument. It is central to it. How many times have you seen some mention of the story from the Treatment Advocacy Center that there are many more mentally ill in jails that there are in psychiatric hospitals. It is normally quoted in such a way as to imply that incarceration is a defiency of hospitalization.
The problem with hospitalization is not the IMD exclusion. Basically fewer and fewer people believe. The ship has sailed. Past crisis stabilization (and some would even question that) fewer and fewer people believe in the efficacy of psychiatric hospitalization to deliver anywhere close to what it advertises. From what I have been told this is another poison pill provision in the bill and if it does pass in some version this is unlikely to be there. Again though it is the same argument: Coercive treatment is good- Shut up the people who might question it (paimi), encourage families to pursue it (hippa and aot) and make it where it is paid for (imd and aot).
Redirect federal funds from effective, voluntary community services to high-cost, involuntary treatment, including outpatient commitment
HR3717 does not redirect funds away from voluntary community services. It does give states an incentive to help people who were offered voluntary services and refused to accept them. For example, Assisted Outpatient Treatment (AOT) is for people who fail on voluntary treatment. It is often the last off ramp before hospitalization or incarceration. By replacing hospitalization and incarceration with community treatment, it cuts costs in half.
The myth of the myth
Mr. Jaffe successively slays another dragon. But only he sees it. I dont know of a single person who has made the claim he talks about. No one I know believe that HR3717 redirects federal funds. In the next thing though that he describes as “the fact” he changes what he is talking about. “…does not redirect funds away from voluntary community services.” Federal funds are no longer mentioned. The problem is that Aot does take away from community services because the funds to pay for it must be found somewhere. The reason I believe it is such a minimal, inconsequential program in most states is that the states have experienced first hand how much it costs. Since state budgets are so limited the funds for big ticket items must come from some where. In Tennessee 1 person was served in AOT for a price tag of roughly $25,000. The behavioral health safety net serves over 33,000 at about $750 a person. It is way too little bang for way too big bucks.
The New York program serves about 2000 people a year for $32,000,000 a year plus investments in each year in new programs and infrastructure. Tennessee’s $32,000,000 is coming straight out of community services and people who are suffering from lack of services will then find out how to suffer with no services.
In a way they cut their nose off to spite their face. It matters what you commit people to. There is no reason to believe that skeletal services administered in a coercive way works any better than the same services provided on a voluntary basis. With a full fledged AOT program the expense of that program would make it very difficult for a state to afford to improve the level of services it offers.
Jaffe has two or thre more points. But I am not going to do the same exhaustive point by point analysis on them. This is already far longer that I meant for it to be and so the remainder of the post will be brief.
He agrees that the Murphy Bill is trying to destroy Samsha, but basically just says they deserve it. His biggest complaint I think is that SAMSHA does things he doesnt agree with like treating recovery as an important part of the mental health system. (Jaffe prefers the “mental illness treatment system. I think he doesnt want for anyone to get any high hopes. He wants you to know it is a life time curse.) And it again it follows along with the same process: silence potential threats-paimi, make it easier to commit people- hippa, make it financially viable- imd and aot and control the conversation by gettng rid of anyone who disagrees with you- samsha.
He likes to use the term evidence based treatment. I just dont know of any the bill supports. Psychiatric Hospitalization is not an evidence based practice. Medication is not an evidence based practice. Aot is a law, and not an evidence based practice since the actual services people are exposed to would differ from state to state. If you look at any list of evidence based practices you can find you will find a very large list of practices that fall under that rubric of peer based or peer support practices. Again it is word games. But Mr. Jaffe can sell. Man can he sell.
He has another myth about AOT. Most of what I wanted to say is said in the previous point about that. The one thing that really does stand out for me is the question of why when virtually every state has an AOT law why we even need to have a national law. In the queen of AOT heaven in New York 2000 people out of 675,000 people in the system are served per year. That translates into 1/3 of 1%. The biggest problem with AOT is simply that for the most part it is inconsequential. The idea that it is a far ranging reform for the mental health system just doesnt look at the facts. One of the justifications for AOT is the idea of anosognosia. Supposedly 50% of the people with severe mental illness dont know they have a problem and that is why they need to be committed. If you do the math in New York state that means about 370,000 people should have anosognosia. AOT serves 2000. 368,000 are missing.
He says that the bill by funding AOT would support the Olmstead decision about individuals being served in the most intergrated setting. The bill in whole identifies people with mental illness as people who should not be allowed to make decisions for themselves and that pose a real and increasing risk to the community. Somehow that doesnt seem like inclusiveness. And the assumption that Jaffe makes that the bill through the use of AOT would reduce people being in jails is one giant assumption. More than anything I just think it would be inconsequential. Again think New York. 1/3 of 1%
In his final point Jaffe talks about research showing peer support programs dont work. He does say what research or how that conclusion is reached or does he mention the reams, literally reams of research, that show exactly the opposite. I guess if he says it must be true. At least he seems to think so.
I think this post is too long and apologize for that. Jaffe says so much it seemed important to try to deal with as much of it as possible. You may find things misstated in your opinion or that I have taken liberties with Mr. Jaffe’s ideas that are not warranted. That is ok. It is not my intention. And if I have I certainly apologize.
The mental health system is in trouble we all know that. Personally I believe the Murphy Bill (at least the parts he did not borrow from other people’s bills) is not reformation but deformation. It seems that Mr. Jaffes ideas are normally accepted as gospel and that is a shame. He can say the most outrageous things and as long as he does it with passion and outrage it seems that little he says is seriously questioned. We can do better.
The bigger truth and more important truth that Jaffe does show is the deep divisions among those people who care about mental health. Jaffe is right when he says the treatment of those with mental illness in jails and prisons is a national disgrace. But until a vision can be developed that unites people in their common concerns I wonder how much chance of real change there is.
With grateful appreciation to my friend Roger Stewart
The first rule is self-care.
The last rule is if you forget all the other rules go back to the first rule.
Self care does not mean life is about you. It means that it is for you. Sometimes the things that are about me are not for me. This is a crucial distinction. Self care is not about selfishness or self centeredness. It is exactly the opposite. Both those things are destructive in the end. People with supreme egos are not into self care. It is a quieter, wiser, and stronger approach to life. In the taking care of me is the key to living a life that is about more than just me.