The voice of ordinary people: building mental health advocacy in Tennessee

February 23, 2015 by

I believe the voice of ordinary people should matter.  More importantly I believe it can matter.  To often it does not. 

“Nothing about us without us” is a great idea.  It is a value worth making real.  Too often it is not.  With so much in the public debate about involuntary treatment and an almost romanticization of asylums and psychiatric hospitals this is a disheartening time for many people with lived experience.  It is time, long past time for voices to be heard.

I spent this weekend in Chicago with the DBSA talking about a pilot program they are launching to make that happen. Nationwide there are over 50000 people in DBSA support groups.  In Tennessee alone there are over 2000.

  A large portion of them have been diagnosed with bipolar disorder and they are the people who put lie to the notion that recovery is a gimmick or fanciful notion for people with “serious mental illness.”  They are a wide range of people some doing poorly and some doing well.  They are united by a common faith that life can get better and that nothing is closed to them or should be closed to them because of their diagnosis.

The DBSA idea is to develop grass root advocacy organizations that leverage and extend the influence of their support group members on public policy that affects them.

6 states have been identified to test the notion and develop and refine the processes that can make it a nationwide reality.  I am the chairman of the Tennessee grass roots programs.

Many times issues arise on a state, local or national basis that affect mental health and the call goes out to “call your legislator.”  The result of that call is often less than hoped for and advocates are left to wonder why people are so apathetic about something so important.  This illuminates a central insight which is a foundation to what we hope to accomplish in Tennessee.  To many efforts fail not because of the action proposed or what people want to accomplish.  They fail because organizations assume they have the capacity for action rather than realizing that capacity must be developed and grown.  Capacity must be planted and nurtured as if a flower worthy of bloom.  Many great ideas die from the inability to do, from the lack of capacity for effective action.  The development of capacity is one of our prime goals.  One definition of capacity would be to have enough people to act who believe that things can get better if their ask, their cause becomes reality, who believe that what they do makes a difference in service of that goal, who believes they have the ability, knowledge or skill to do what matters, who feel supported in their efforts and who feel like the whole effort has meaning and purpose

By no means are all the ideas in this post mine. Phyllis Foxworth national director of advocacy for DBSA has had decisive impact on many of them. The grassroots organizations of Illinois and New Jersey are helping to already put some of these ideas into real life and polishing them and refining them further. People from Florida, California, Washington DC, and Texas were also represented this weekend. It was and is a communal stew. This post tries to describe what it might look like in Tennessee.

Our plan can be conceptualized on several different dimensions:

1. Principles How do you get people to actually step into action? Many organizations I have been part of assume this is automatic or simply a matter of effort it isn’t. The principles of getting people to act were alluded to earlier in this article and described more fully in another post. Briefly they are: Encourage People must believe that things can get better and that part of things getting better are in what you advocate for. Empower People must believe that they can do something that matters, that makes a difference in making your ideas real. Educate People must believe that if there are things to do they cant do they can learn how and you can teach them. Support People must feel like they will be supported in their efforts. They need to know they are part of a web of connections. Confirm People must believe that this is a meaningful effort and have a sense of purpose. Advocacy must be worth the effort, the pain, the struggle, and the risk. Everything is a matter of degree and to the degree these things are true it is likely you will have a true advocacy community.
2. Leadership Roles There are several key roles in developing this kind of organization. Some of the roles identified for the DBSA organizations include: Recruitment finding people who will be part of the organization. Basically it is advocating for advocating. It is getting the word out, contacting those interested, assessing that interest and getting people to commit to action. Partnerships and coalitions DBSA is not the only advocacy organization in Tennessee. We are not competition for anyone, nor them for us. The role of the coalition person is to reach out to other organizations and identify ways we can connect and work with them. It is foolish to reinvent the wheel when others are driving cars. Policy These are the people responsible for researching facts and helping to identify issues and formulate positions. Actions These are the people who are leading in the formulation of possible actions on issues.

It is possible to identify other roles. In a real sense everyone involved will do all these things. The idea of leadership roles is to help maintain focused effort in each area. Leaders are really more facilitators than anything and hopefully there will be multiple people in each role. Organizations dependent on the personality of one person tend to be very unstable and likely to fail.

3. Levels of involvement It is ok for people to be involved at different levels. For some people an email to a representative is a big step. Others may do more. There is no “real advocacy. ” You must meet people where they are at and by doing that increase the chances that in time they will be able and willing to do more.

4. Issues It is important to know what you are about and what you are for. Issues should be clear and concrete. You should know what you want and what you want should be achievable. You should have an idea of how to get it that is practical. And finally you should have a way to know if you got it that is measurable. If you are confused about where you are going you don’t tend to get there. If you try to go too many places you tend not to ever leave. What starts in confusion doesn’t just end in confusion…it ends.

We are at the crawling stage right now. The obstacles I am sure will be many and strong. We don’t know the answer because we don’t know the questions.

A friend once told me that much mental health advocacy was a circular firing squad. Our goal is to straighten the line and go after targets that make a difference. If you live in Tennessee and would like to be involved we would like to hear from you. You need not be involved with the DBSA. If you are in other states doing similiar things we would love to talk to you and share stories and experience.

Everyone should have access to quality mental health care. And the time to act is now.

Beware return of ‘asylums’

February 23, 2015 by

Beware return of ‘asylums’
http://mobile.philly.com/news/opinion?wss=/philly/opinion&id=293520241#LAeMeMjqtY6c6LCj.99
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A SIMPLY GREAT, GREAT ARTICLE

On problems, positives and persistence

February 23, 2015 by

It occurs to me that:

1.  You should never minimize the problems in your life but no matter how bad things are, how messy problems are bad things are what you must cope with, not what you must settle for.  That is a critical distinction too many of us dont make.  To cope with does not mean to settle for.  And so often, too often we do settle.  We dont have to.  And that is the most realistic thing you can know.

2.  Dont attach a “yes but” to the positives in your life.  Too often we measure what is right by how much is wrong.  Treat good stuff important.  Things become treasure by the value we treat them with.  Become a ruthless treasurer.

3.  Be persistent.  Refuse to be defined by what is hard.  Instead define yourself by your pursuit of what is possible.

Life is your testimony.   Choose a story you really want to tell.

Jumping over a dollar to pick up a nickel

February 23, 2015 by

I once heard governmental financing defined as “jumping over a dollar to pick up a nickel.”  It is the passionate pursuit of short term savings and the equally passionate disregard for the long term costs created.  It seems if you can shift the costs to someone else you have “saved” money and it often doesn’t seem to matter if the person you hand the bill to is another governmental agency.

Tenn Care knows about jumping over a dollar to pick up a nickel.  I cant help but wonder what would happen if agencies had to account for the consequences of saving the money they “save.”

Tenn Care is saving money. And there will be serious consequences to those savings.

Level 2 case manager services are being eliminated and $30 million will be saved. Tenn Care will no longer pay mental health centers for these services any longer.

What does it mean? 50000 Tennesseans who receive these services and find them essential to remaining stable in their communities will be left without. The most vulnerable will once again be the most consequenced.

Talk to your legislator. Let them know that the creation of human misery is neither an inevitable or acceptable result of financial “responsibility.” Let them know that decreases in mental health services that only increase the severity and costs of the consequences of mental illness is not really saving anything or anybody.

Tell them to stop and pick the dollar up. The nickel is not that important.

The Rebranding of the Murphy Bill

February 23, 2015 by

Last year the Murphy Bill, in a campaign defined by an obsession with self congratulation and a almost religious evangelism, failed.  It laid an egg… a loud egg but an egg nevertheless.  The Murphy crew didn’t try to just beat the opposition.   They tried to obliterate it with every low blow, every personal aspersion, every character attack and smear they could imagine.  They took no prisoners but found themselves locked into a prison of meaness and abrasiveness from which they never even tried to escape.

They recruited a passionate opposition and as a result didn’t make it out of committee.  Even the AOT grants they snuck in through the back door of the medicaire doc fix weren’t funded.  Rep.  Murphy found out that despite his efforts to brand his bill as deliverance no one was buying what he was selling.

He has learned despite the total faith of many he couldn’t and this Murphy Bill is more dangerous as a result.  We are witnessing a determined effort to rebrand Murphy as something more reasoned and substantial.

We have seen the first odes to the “new asylums.” “Scientific” people have pronounced that hospitals (oops I meant asylums, that is new asylums) are a kinder and gentler option for all those “severely disturbed” folks who keep on struggling in life. The “asylums” we are told will doubtless be run by “recovery principles.” The best way after all to tell people not to worry about psychiatric hospitals is doubtless to tell them they are not psychiatric hospitals. And we are told this is cutting edge thought.

Rep Murphy has seized upon a report from the GAO that faulted SAMSHA for stopping a committee that Congress stopped appropriating the money to have as evidence of malfeasence and shoddy operation. Dr. Torrey tried to present it all as a scathing report but got lost in fruit smoothies and really didn’t help.

I was in Chicago this past weekend. The new governor is wanting to cut over $80 million from the state budget on mental health. I am certain he would have no problems filling a “new asylum.”

Murphy is trying to rebuild his momentum and remove the bullseye he had placed upon his chest. He favors once again more testimonials from suffering family members. He is trying to rebrand himself as riding a larger tide now and thus mute some of the antagonism he so easily engenders.

Only time will tell. There seems to be no end to newspapers willing to print supporting articles without asking hard questions about content and the odds are strong we have not seen the end of Rep Murphy or those with supporting ideas being portrayed as agents of a greater kindness and real humaneness. The times are dangerous.

For all of us.

Envisioning the Future of Mental Health

February 22, 2015 by

Envisioning the Future of Mental Health – Mad In America
http://www.madinamerica.com/2015/02/envisioning-future-mental-health/
【from Next Browser】

Worth reading

How do you convince someone to become an advocate??

February 22, 2015 by

1.  Hope and encourage.  You must convince people things can get better.  You must have a narrative, a story that plausibly, realistically, relevantly and effectively ties what you are in favor of with things getting better.  It has to be possible and realistic for things to get better and what you advocate must be part of things getting better.

2.  Empower.  You must convince people what they do matters.  Somehow through their actions people must come to believe they are part of things better.  People must see their efforts as having potency.

3.  Equip and educate.  People must believe that they can learn the skills and tools to make a difference.  They must believe that you will help them to become effective and enable them to grow to become even more effective.  You must make success a real and tangible possibility.

4.  Support.  People must know that they will be supported in both their efforts and as a person.  They will not believe they are important if you do not treat them as important.

5. Confirm.  They must come to believe all the effort and connection is worthwhile and purposeful.  They must believe that their role is meaningful, their effort worthwhile and their cause important.

Encourage
Empower
Educate
Support
Confirm

To the degree you are unsuccessful in these things successful advocacy for even the most important and valued causes will prove elusive or even impossible.

Going home…a DBSA weekend

February 22, 2015 by

A good friend once told me that the biggest problem with mental health advocacy was that too often it was a circular firing squad.  This weekend in Chicago has been about figuring out how to straighten out the line.

I have been part of a meeting this weekend at DBSA national headquarters, along with representatives from 6 other states to figure out and set in motion the means to empower people largely unempowered and unheard.  Given recent articles about “returning to the asylum” the weekend had special urgency for me.

Advocacy is about power and the capacity to act.  It occurs to me we spend far too much time on debating the merits of actions and far too little time building the capacity to act.  It matters little what we would like different if we don’t grow our capacity to make a difference.  And thinking in my mind of groups and coalitions I have been part of and what worked and what didn’t perhaps capacity was the distinguishing factor between success and failure.  More than once I have been part of groups that badly wanted something different to happen but who just didn’t know how to make a difference.

Advocacy is built and never just found full grown.  Listening to what was said this weekend and thinking about my own experience the following seems true.

1.  People must buy in and emotionally invest.  They must see it as there being something in it for them.  It must make sense at a personal level.  They need to know why success is important.  They must feel like they have something to give.  People don’t advocate long or hard when they don’t believe they make a difference.  They have to believe it is safe.  This does not mean it is not dangerous or hard.  It means they can have faith in the mission and in the character of those they stand with.  And finally few people buy into things when they feel like no one really cares about them, what they think, what they do, and what they value. 
2. Successful advocates know what they are fighting for and they make sure that the fight is about what they are fighting for.  If someone must totally agree with me to stand with me then it is likely I will stand alone.  And if no one will stand with me or if there is no one I can stand how much will what I stand for ever matter?
3.  Successful advocates ask people to do things they can do and in the process help them learn to do more and want to do more.
4.  Successful advocates understand momentum.  It is something you get better at as you do and every experience offers you the opportunity to learn something to make the following one better.
5.  Successful advocates have a narrative of how what they ask makes a difference, they can share that narrative with others, and know how to tell people what they can do to help.
6.  Successful advocates ask for what they want and don’t assume others automatically understand.
7.  Successful advocates have the skill of convincing people that don’t think what they do matters that it does.
8.  Successful advocates have faith in the process.  They know the difference between wars and battles.
9.  Successful advocates learn what makes them more successful and then do it on purpose rather than just hoping things work out.
10.  And finally successful advocates know that planning and organization allow effective passion and don’t get in the way of it.

I hope this has been a weekend of seeds planted.  I am eager to see what blooms.

The new bigotry

February 21, 2015 by

There is a new bigotry amongst us.  It like many bigotries is cloaked in “for their own good” terms that seek to make it polite and palatable and even fashionable. 

Last year Rep. Tim Murphy, under the considerable guidance of Dr. E Fuller Torrey,  unveiled what he termed a major mental health reform bill.  Central to that bill was the notion of the coercion of mental health patients into treatment as a core value.  In Murphy’s eyes it was not something you could do.  It was the definition of what you should do.

Despite a lot of sound bites and an incredibly docile press that seldom gave due diligence to anything he said his bill despite all that and a never ending  volume went no where.  It didn’t make it out of committee.  It ignited a fire storm of controversy.  Congressman began to hear that a bill based on crisis management and not crisis prevention was pointless and counterproductive.  They began to hear that the problem was not that the mentally ill had too many rights, but that, in a country which seemed intent on starving its mental health system to death, they had far too little help.  They began to hear that contrary to what Rep. Murphy said they were not biologically deficient people that could be easily grouped into discrete little groups for their own good and our protection, but that “they” are “us.”  “They” are ordinary people coping with extraordinary circumstances, often with great courage, not the least of which is to live in a culture that treats them with systematic discrimination and disregard.  Organizations like Bazeldon and Mental Health America among many others were united in their insistence that we can and should do better.  In the end not even the funding for the AOT grants that Rep. Murphy had snuck into another bill saw the light of day.  Murphy lost.

Now we have a new Murphy season.  And it is a little different.  The tabloid appeals to emotion and outrage and fear are still there, but in the last month or so a new element has appeared and perhaps it is the most dangerous.

People of supposed intellectual weight are singing the praises of “asylums.” Pieces in the New York Times and JAMA try to provide intellectual palatability for what has long been regarded as morally indefensible. They assure us that what they are saying is new.  After all it is “new” asylums they praise.  They ignore the lessons of history and would have us repeat it.  As Robert Whitaker shows in his book “Mad in America” we have a long history of “new” asylums.  The results have always been the institutionalization not of better care, but of a new moral horror.

It does not surprise me that a psychiatrist in New York thinks we should have more hospitals and that they should embrace a wider clientele.  It does not surprise me that ethicists in Pennsylvania would decide the answer to old hospitals is to make them new asylums.  I am surprised at their lack of reality contact.  I am surprised that in an era of diminishing financial resources and after years of eviscerating cuts to mental health systems throughout the country, that they could with a straight face say the answer to our problems are to do more expensive things, to utilize long ago discarded ideas, and to do it for fewer and fewer people when more and more are in need. 

The new bigotry is not really new.  It just has a new set of clothing.  It is as nasty and as dangerous as that which proceeded it.  If you read the actual articles they are full of holes, nonsensical reasoning, and simple lies as I have written about elsewhere on this blog.  But they are no less dangerous. 

In coloring the horrible as humane they threaten us all.  The essence of the most effective and hurtful bigotries is always to find a way to make it palatable and even embraced by ordinary people.

Grassroots advocacy for recovery

February 20, 2015 by

A real question in mental health advocacy is what is the most effective way to build advocacy both at the state and local level as well as the national level.  And an even more pointed question is how do you do that at a grassroots level.  How do you tell ordinary people their voice matters and give them a practical and accessible mechanism to make that voice heard?

I don’t know that right now anyone has an answer for that. Some organizations focus nationally.  Some focus more locally or statewide.  The voice for many organizations is whatever their leadership says it is and their is minimal opportunity for others to play much of an active role or make an impact.

A long time ago someone said, “Nothing about us without us…”  There are many voices both on a national and state level that would do much about us without us and the question of effective grassroots advocacy is a real important and key issue.  How in practical concrete terms do you begin to make “nothing about us without us” more a reality and less an unreached ideal?

I am sitting in an airport right now waiting on a plane to Chicago. I am going to DBSA national headquarters. They have an idea.

The DBSA has over 700 support groups nationwide with literally thousands of people involved. Linda and I facilitated a DBSA group for 7 or 8 years. If you look at their website the one concept you will hear about a lot is thriving. It is, they believe, possible for people, even under the most difficult of circumstances, to find better life. They don’t think recovery is a hypothesis or a wish. They think it is a fact, a fact proven by mountains of scientific data and the testimony of thousands of people. Not only is it a reality, but it is an accessible reality for many given the tools, the experience, and support needed.

Their idea is to find a way to give the people in their support groups voice and political leverage. They want to equip and empower the thousands involved with DBSA to become an effective voice and force for much needed change in our mental health system.

Representatives from 6 states (I will be representing Tennessee) will be meeting how to develop grass roots organizations in their states and hopefully plant the seeds for a national effort. I am very excited to be part of it.

If recovery is to be real it means you must matter. I can think of few ways to matter more than to have a real voice and place in the conversations about matters that ultimately affect you and the life you lead.

Rep Murphy: The UnRepublican Response to Newtown

February 20, 2015 by

Rep. Murphy you got your start as the supposed Republican response to Newtown.  You were supposed to show how the Republican party was going to deal with and prevent further tragedies like Newtown.  Your primary answers have been true Republican House of Representative answers:  blame…blame….blame.  Tell people that the true cause of such horrible tragedies are the people in charge who only care for themselves and their narrow interests.  Change the words mental health to health care, or poverty, or food stamps or any of a bunch of other topics and the approaches are the same.  And after blame demonize.  Give the bad guys tangible human form.  Demonize Samsha.  Demonize Paimi.  Demonize mental health consumers who have the utter gall to suggest life can get better.  Demonize anyone who suggests that human rights are the law and not an inconvenience to psychiatric practice.  And then after you have blamed and after you have blamed in true “lets repeal the ACA fashion” proclaim solutions as the only true hope for America that because of their political one sidedness and narrow partisanship and commitment to not working with the people you disagree with that are unlikely to ever become reality.

The UnRepublican response to Newtown came out this week.

I am reading it and it will take a while to finish but a couple of things stood out.  LOCK CLASSROOM DOORS FROM THE INSIDE.  There has not been one, not one episode of a school shooter coming through a locked door to claim his victims.  You want to pass helpful legislation…Pass that.

The second thing was the quote below from the mental health section (I am sure there will be more as I read on):

Despite the existence of a broad array of potentially helpful treatment modalities and services and the efforts of dedicated and skilled professionals, our behavioral health system as a whole fails too many children and adults in need.   Indeed, in testimony offered to the Commission and in a variety of other venues, experts and participants at all levels persistently describe our mental health system as ―broken.‖  Among the system‘s major shortcomings, a disproportionate focus on the etiology and symptoms of illness rather than the conditions conducive to health greatly limits its efficacy and reach.  Mental health extends significantly beyond the management of mental illness.  Yet for much of the past century, mental health care has remained largely reactive instead of proactive.  Our narrow approach to mental health care has generally confined strategies to screening, referral and treatment for mental illness.  Just as physical health entails more than the mere absence of disease, however, mental health encompasses overall psychological, emotional and social wellbeing.  Achievement of such well-being demands a more comprehensive approach that prioritizes the promotion of mental health as well as the treatment of mental disorder.  While it is critical that we have effective systems in place to identify and treat mental illness, such systems remain insufficient to promote true mental health.  Instead, we must build systems of care that actively foster healthy individuals, families and communities.

Rep Murphy I read this to say the problem is not that we have too little of you but too much of you.  “Wellness” is neither the fad or curse word you make it out to me.  Diagnostic categories are not the “be all” of the mental health system.  And the narrow focus on what is wrong is not the same as focusing on what can make it better.  Recovery is not in the way.  Properly understood (not the caricature you present) it is the way.

I am interested in your response to the report.  I expect you will dismiss it as a plot by the mental health industry complex to dispel the purity of your vision but it would be neat if there was more to you than that.

But before you totally dismiss it try something:  Read it!

The DSM and the search for noble truth

February 19, 2015 by

hopeworkscommunity:

From the archives

Originally posted on Hopeworks Community:

There has been a literal flood of words written about the coming publication of the new DSM.  It seems to have been shredded from more directions than you thought there were directions.  For the psychiatric bible it seems less holy and more hole-y.  It seems closer to swiss cheese than holy grail.

I have started reading Gary Greenberg’s book, “The Book of Woe” and been blown away by it. I admit to more than a little satisfaction in hearing so many points about diagnosis made on this blog in the last couple of years being echoed by Greenberg. It makes me feel smarter than I am. The most striking part so far has been what seems to be the clear recognition of the people creating the DSM that there is not any way to prove validity to anything they say.  It seems strange thinking to me to discover things in…

View original 622 more words

Dear Rep Murphy….from the Newtown Report

February 19, 2015 by

You are wrong.  A small piece of the Newtown Report:

Despite the existence of a broad array of potentially helpful treatment modalities and services and the efforts of dedicated and skilled professionals, our behavioral health system as a whole fails too many children and adults in need.   Indeed, in testimony offered to the Commission and in a variety of other venues, experts and participants at all levels persistently describe our mental health system as ―broken.‖  Among the system‘s major shortcomings, a disproportionate focus on the etiology and symptoms of illness rather than the conditions conducive to health greatly limits its efficacy and reach.  Mental health extends significantly beyond the management of mental illness.  Yet for much of the past century, mental health care has remained largely reactive instead of proactive.  Our narrow approach to mental health care has generally confined strategies to screening, referral and treatment for mental illness.  Just as physical health entails more than the mere absence of disease, however, mental health encompasses overall psychological, emotional and social wellbeing.  Achievement of such well-being demands a more comprehensive approach that prioritizes the promotion of mental health as well as the treatment of mental disorder.  While it is critical that we have effective systems in place to identify and treat mental illness, such systems remain insufficient to promote true mental health.  Instead, we must build systems of care that actively foster healthy individuals, families and communities.

Newtown Panel’s Report Aims to Improve Safety

February 19, 2015 by

Newtown Panel’s Report Aims to Improve Safety – NYTimes.com
http://mobile.nytimes.com/2015/02/13/nyregion/2-years-after-newtown-school-shootings-connecticut-panel-issues-proposals-for-prevention.html?referrer=
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That asylum stuff: an adventure through the looking glass

February 19, 2015 by

The Modern Asylum – NYTimes.com
http://mobile.nytimes.com/2015/02/18/opinion/the-modern-asylum.html?ref=opinion&_r=0&referrer=
【from Next Browser]

As hard as it is to believe it seems there is a growing fad for educated, smart people to tell us that the primary need of our broken mental health system is to develop “new and modern asylums.” It is looking glass stuff and teaches us to be wary about automatically assuming the value of education and advanced intelligience. No one it seems is immune to stupidity.

The latest adventure was printed recently in the New York Times.

LAST month, three ethicists from the University of Pennsylvania argued in the Journal of the American Medical Association that the movement to deinstitutionalize the mentally ill has been a failure. Deinstitutionalization, they wrote, has in truth been “transinstitutionalization.” As a hospital psychiatrist, I see this every day. (Is this not a way of saying that people who leave psychiatric hospitals don’t typically do always very well. Being hospitalized does not prepare people well to not live in the hospital. Statistic after statistic proves this. It is why insurance companies don’t pay and long term hospitalization is dying.) Patients with chronic, severe mental illnesses are still in facilities — only now they are in medical hospitals, nursing homes and, increasingly, jails and prisons, places that are less appropriate and more expensive than long-term psychiatric institutions. (Perhaps I misunderstand but is she not arguing that we need more long term hospitals because people tend to relapse when they leave long term psychiatric hospitals? Would it not make sense to say that more effective community programs are needed? Have you ever noticed how often psychiatrists believe most problems result from a defiency in psychiatric hospitalization. And finally “more expensive than long term psychiatric hospitalization”… In psychiatric terms that is called a delusion. It positively, emphatically, with exclamation point underlined simply not true. Hospitals are way too little bang for way too many bucks. I would suggest the good doctor consult with the commissioner of mental health in any state as too “more expensive…”)

The ethicists argue that the “way forward includes a return to psychiatric asylums.” And they are right.

Their suggestion was controversial. Critics argued that people should receive treatment in the least restrictive setting possible. The Americans With Disabilities Act demanded this, as has the Supreme Court. The goals of maximizing personal autonomy and civil liberties for the mentally ill are admirable.

But as a result, my patients with chronicpsychotic illnesses cycle between emergency hospitalizations and inadequate outpatient care. They are treated by community mental healthcenters whose overburdened psychiatrists may see even the sickest patients for only 20 minutes every three months. Many patients struggle with homelessness. Many are incarcerated. (It is hard to know where to start… Do people really relapse because someone respects their rights. Does that not sound like nonsense to anyone but me??? The whole paragraph shows a remarkable lack of understanding about the role of the psychiatrist in community mental health. The fact that may rarely see a client is irrelevant to the quality of care since the psychiatrist doesn’t really provide the care. As to the 20 minutes that is 10 minutes longer than most psychiatrist visits are. It just doesn’t take long to ask someone about their sleep, their appetite and whether or not they are taking their meds.)

A new model of long-term psychiatric institutionalization, as the Penn group suggests, would help them. (What exactly is that? It is so very hard to get much enthusiasm for fictional creations. I think maybe the new model is like the old model without the bad stuff. If it was that easy dont you think someone would have already done it? Does the notion of psychiatric hospitalization in real life not have inherent problems and a penchant for one person abusing another.) However, I would go even further. We also need to rethink how we care for another group of vulnerable patients who have been just as disastrously disserved by policies meant to empower and protect them: the severely mentally disabled.

In the wake of deinstitutionalization, group homes for the mentally disabled were established to provide long-term housing while preserving community engagement. (Dr. it is called the law.) Rigorous regulations evolved to ensure patient safety and autonomy. However, many have backfired. (What exactly does that mean? It would be nice if such a broad assertion was actually coupled with something even resembling a fact or some reference to what this is actually based on. Long term custodial institutions were an abomination. and years and years of law suits have finally closed them in many states.)

A colleague of mine who treats severely disabled patients on the autism spectrum described a young man who would become agitated in the van on outings with his group home staff. Fearing the man would open a door while the vehicle was moving, staff members told his family that he would no longer be permitted to go. When the parents suggested just locking the van doors, they were told that this infringed on patients’ freedom and was not allowed.

Group homes have undergone devastating budget cuts. Staffs are smaller, wages are lower, and workers are less skilled. Severe cognitive impairment can be accompanied by aggressive or self-injurious impulses. With fewer staff members to provide care, outbursts escalate. Group homes then have no choice but to send violent patients to the psychiatric hospital. (Again facts would be nice. At least in Tennessee this idea of group homes in the throes of chaos and violent behavior just simply isn’t true. It has as much standing in truth as tales of Aladdin and Mickey Mouse.)

As a result, admission rates of severely mentally disabled patients at my hospital are rising. They join patients who are suicidal, homicidal or paranoid. We have worked to minimize the use of restraint and seclusion on my unit, but have seen the frequency of both skyrocket. Nearly every week staff members are struck or scratched by largely nonverbal patients who have no other way to communicate their distress. Attempting to soothe these patients monopolizes the efforts of a staff whose mission is to treat acute psychiatric emergencies, not chronic neurological conditions. Everyone loses.

The problem is compounded by the fact that group homes often refuse to accept patients back after they are hospitalized. One of my patients with severe autism and a mood disorder is on his 286th day of hospitalization. (Hospitals should never be a substitute for a place to live. When they closed a psychiatric hospital in east Tennessee they found that 38 of 47 “chronic” patients were simply poor and didn’t have a place to live…) Another with autism and developmental disability has been on the unit for more than a year. (The implication that autism is a chronic disability needing a new asylum is just so much nonsense. I don’t know what else to say.) Insurance companies won’t pay for inpatient admission once patients are no longer dangerous, so the cost of treatment is absorbed by the hospital, or paid for by taxpayers through Medicaid. (Perhaps my experience is limited but I don’t know of any hospitals that are not state hospitals that eat any costs. Medicaid doesn’t pay hospital costs. The doctor forgot about facts.)

So institutionalization is already happening, (Have I missed it or has the doctor forgot to include any proof other than a couple of anecdotes and vague assertions?) but it is happening in a far less humane way than it could be. The patient with autism who has spent a year in a psychiatric hospital is analogous to the patient with schizophrenia who has spent a year in prison: Both suffer in inappropriate facilities while we pat ourselves on the back for closing the asylums in favor of community care.

Modern asylums would be nothing like the one in “One Flew Over the Cuckoo’s Nest.” They could be modeled on residential facilities for patients with dementia, (Is she saying hospitals should be modeled after alzeimers units? This is her new asylum?)who would have languished in the asylums of yore, but whose quality of life has improved thanks to neurological and pharmacological advancements.

Asylums for the severely mentally disabled would provide stability and structure. Vocational skills would be incorporated when possible, and each patient would have responsibilities, even if they were carried out with staff assistance. Staff members would be trained to address the needs of minimally verbal adults. Sensory issues often accompany severe intellectual disability, so rooms with weighted blankets, relaxing sounds and objects to squeeze would help patients calm themselves.

Facilities for chronically psychotic patients would have medication regimens and psychoeducation tailored to the needs of those living with mental illness. (“Medication regimens”? The difference between old hospitals and new asylums is what?)

Neither my chronically psychotic nor my mentally disabled patients can safely care for themselves on their own. They deserve the relief modern institutionalization would provide. Naysayers cite the expense as prohibitive. But we are spending far more on escalating prison and court costs, and inpatient hospitalizations. (Again very very very importantly this is simply not even a little bit true. A hospital bed in Tennessee can cost as much as $345000 a year. The ship on psychiatric hospitalization long ago sailed a very long time ago.) More important, we are doing nothing about the chaos and suffering in patients’ lives.

We can’t continue to abandon our most vulnerable citizens in the name of autonomy.

I agree with the last statement. We cant afford to abandon our most vulnerable citizens in the service of an agenda driven by long discredited ideas and glib assertions of “new asylums”. The fad of romanticizing “asylums” is dangerous at such a time as these really needing serious thought and actions. The people in need, in pain and in distress deserve more than such half baked concoctions.


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