This has been a turbulent week on this blog, beginning with a letter from an angry mother accusing NAMI and journalist Robert Whitaker of causing her son to stop taking his medications. This led to Whitaker’s response. In between, many of you posted passionate, emotional and sometimes angry comments.
Disagreements are inevitable. The question is: can we learn from each other and move forward to build a better system? I asked Virgil Stucker, the executive director of CooperRiis, to answer that question in today’s blog. Located in western North Carolina, CooperRiis is a therapeutic community. Like others that I have visited, it creates an inclusive environment where individuals feel accepted, something I believe is essential to recovery. CooperRiis and other therapeutic settings are understandably expensive so I asked Virgil to share how some of the guiding principles at CooperRiis can be used to help others in their own communities.
It is time to build bridges across the divisions
Thank you for the invitation, Pete, to address your readers. Of late, the dialogue, both on your blog and in the national arena has become quite divisive when it comes to answering the question: How can we best help the vulnerable amongst us, those with mental illness and sometimes addiction issues, to achieve and maintain their highest levels of recovery? I agree with you that by “working together cooperatively with respect and open mindedness, we can achieve change.”
You asked, “What would a mental health care system look like” that could be individually responsive to complex mental health challenges and provide effective care that is compassionate, comprehensive, and community-based?
As we look around us, we notice that people are more different than the same.
Those who are experiencing despair need empathetic responses from us that arise from collaborative, loving dialogue. When a psychic fracture occurs and behaviors overwhelm the person and those around them, we need to go beyond a ‘one size fits all’ response. There is seldom a simple answer. Neither the prescription that “Medication is the Only Way” nor the protestation of “No Way Medication” help us to work together cooperatively. Digging into dogmatic positions like this seldom fosters respectful dialogue or open-mindedness. The systems that are needed are somewhere between the dogmas and should acknowledge the importance of respectful collaborative relationships.
The answers may be found within true community mental health systems, where the community itself, not just the professionals, provides the core healing modality.
Thank you, Pete, for asking about our nonprofit CooperRiis Healing Communities, which are designed as microcosms of how these salugenic (rather than pathogenic) communities should function. (Salugenic = health giving).
In essence we have designed a ‘recovery college’ with an array of professional supports, including medications, and with a supportive staff that focus as much or more on the resident’s dream than on their diagnosis.
Oliver Sacks, M.D. wrote that we are restoring and modernizing the nearly lost virtues of asylum, bringing the concepts of moral treatment into the present and modernizing these concepts with today’s scientific advancements. Qualitative and quantitative research shows that residents in our healing communities (half of whom are on scholarship) generally restore their capacity for belonging, their sense of purpose and meaning, and an ability no longer to be overwhelmed by the symptoms of their mental health challenge(s).
This type of milieu (community) therapy is also accessible in hospital settings and even in religious congregations, which are too frequently NOT therapeutic. As I write, I am just returning to CooperRiis from the Menninger Clinic where I have lead a workshop on the five principles of the healing community. I have conducted a similar workshop at Oregon State Hospital and with clergy. It’s interesting that as I sit and write on the plane from Houston, the passenger next to me (PastorRoss@Charter.net) is telling me about how he has been working in his church congregation to create a program for people with substance abuse and mental health challenges. Members of the church are being trained to provide care and support. His program exists in 900 congregations across the country. Wonderful! Caring community can be all around us.
We naturally live in community, and ‘relationship’ is the fundamental building block of the human condition. Mental health challenges generally disengage the challenged person from their relationships with family, friends, the community and even their own minds, where distracting thoughts are seen as hallucinations. When we can find a place for these individuals in community and pay attention to the community’s capacity to foster belonging, safety, kindness, respect, participation and self-direction, healing and recovery can occur. Often optimized medications and myriad professional therapies are also needed for those who suffer the most. If we can foster broad-ranging community dialogues, every community in this country could embody some of the elements of CooperRiis. (www.CooperRiis.org)
The “Foundation for Excellence in Mental Health Care” (Excellence for short) is the first international community foundation designed exclusively to foster research and programmatic developments to improve mental health outcomes. (www.MentalHealthExcellence.org)
Excellence itself is an intentional community of philanthropists, grant-seekers, families, people who have (or are) experiencing mental health challenges, researchers, professional practitioners, and program developers and leaders. This emerging ‘community’ feels courageous about helping to foster, incubate, develop, replicate and sustain some of the needed improvements that we so desperately require today. It has already attracted hundreds of people along with a few million dollars aggregated into donor-advised, incubator and general funds; all of which are aimed toward mental health improvement.
Inside the ‘big tent’ of this community, wide-ranging and passionate dreams are being expressed. A new mainstream is being crafted that does not succumb to the dogma on either side of the bank… all who wish to work constructively and collaboratively are welcome to come into the ‘tent’ and be a part of thisphilanthropic community.
As you know, Pete, you are in the ‘tent’ as a member of our work group that is seeking to decriminalize mental illness. (Philanthropy = Love of Humankind)
Pete, I don’t mean that gathering around the campfire and singing Kumbaya will solve our problems. Sometimes difficult conversations and strong voices, such as Bob Whitaker’s, are required to awaken us. Resulting passionate disagreements can indeed resolve into constructive dialogues. Such disagreements are found on your Blog within the comments about Bob’s presentation to NAMI. Can we resolve these into civil discourse? I think so.
After reading Bob’s book, The Anatomy of an Epidemic, I simply could not return it to the shelf. It shook me. I saw that we had equated,for too long, good mental health care solely with the permanent usage of medication. I got to know Bob personally and saw that he was a reasonable, thoughtful person. What I learned from him helped me to be thoughtful in my own work about how best to optimize medication and how to make sure that the prescriber collaborates respectfully with the patient. His words have helped me to guide a process that helps to achieve lower levels of medication usage and helps to work with a few individuals who wish to move toward no or episodic use of medications. This collaborative approach has basically increased, rather than decreased ‘compliance’ in the people I know, who benefit from optimized medication. We also have fewer residents who will abruptly cease medication, an act that can itself cause rebound psychosis.
It’s unfortunate that some people are vilifying Bob. He’s the messenger. The message is clear; after 25+ years, we now see that the “Medication is the Only Way” approach is not sufficient. Neither is the “No Way Medication” approach. The solution lies somewhere between these dogmas.
Pete, I ask your readers, “What can you do to improve the healing aspects of your community?”
We need to infuse understanding, kindness, and compassionate, comprehensive care into the current dialogues of fear that permeate some of our communities.
A current national initiative is emerging that will engage 400 people in each of several communities in the US into a broad community dialogue about improving each community’s mental health care systems. I urge interested readers to reach out to us if they are interested in becoming involved. (Information is on our Foundation’s website.) In addition to working constructively with NAMI, I urge families also to check out the Mother Bear Familiesfor Mental Health (www.MotherBearCAN.org) This is an initiative that is also being incubated through our Foundation and is helping educate families about collaborative and constructive ways to help their family member. We are also interested in helping people to establish their own nonprofit ‘recovery college’ like CooperRiis.
It is time to build bridges across the divisions we have created. It is time to pay attention to the health of our communities. It is time to focus on finding solutions rather than fighting. During this time of change and progress let us be kind and civil to one another. The vulnerable amongst us, our family members with mental health challenges, need our solutions rather than our salvos.
Let us imagine stories of successful, collaborative action and manifest those imaginations into reality.
Virgil Stucker 
CooperRiis Healing Communities, Executive Director
Foundation for Excellence in Mental Health Care, Chairman of the Board
About the author:
What a positive difference this type of therapeutic healing community could have for thousands of people trying to manage their mental illnesses! But who would sponsor these mental health microcosms?
Terri
Terri, Thank you for your enthusiastic words. In regards to your question about who might sponsor nonprofit places like CooperRiis, I offer the following:
a) I have the privilege of working with Don and Lisbeth Cooper, outstanding philanthropists who are our founders and the leaders of our Board. They have given and raised several million dollars in donations to pay for the infrastructure of our two healing communities. We have devised an approach to covering our operating costs without having to rely on public funding. Families of means pay the full cost; families of lesser means may receive a scholarship (to the tune of about $2.5M a year). Medical insurance sometimes pays and 10% of the budget is generally covered by annual donations.
CooperRiis is the 3rd healing community for which I have been the founding executive director. Each has been led by a nonprofit board and a philanthropic family with a family member who has experienced serious mental health challenges. As we know, mental health challenges do not respect socio-economic backgrounds; There are many families of means who could help to capitalize a healing community like CooperRiis with generous donations.
b) My hope is that public policy and public funding will someday be directed at solutions like CooperRiis. I believe that the investment would be worthwhile. We would welcome inquiries from policy makers, who might see that our approach is cost saving in the long run. For example, this brings to mind a 32 year old man with schizophrenia who came to us from a public hospital after his 50th hospitalization… yes, 50. After going through our program, he still has schizophrenia, but he is now a commercial artist, works half-time at an office supply store, has his own apartment, has dropped 50 pounds, takes a little Clozaril, and has learned to talk to his voices only within his apartment. This is a life in recovery… and is sure a lot cheaper that his prior experience with revolving hospitalizations.
By the way, some other places somewhat like CooperRiis can be found at http://www.ARTAusa.org.
Many more healing communities are needed.
Virgil Stucker
Virgil, thanks for answering my question. You offer much hope and many options to people requiring 24/7 wrap around care to recover and build upon their hopes and dreams. Your work and philosophy depend on individuals having the moral capacity to do good works and to share their wealth to help others in grave need. Sure hope more people hear about your person centered approach to managing and recovering from brain diseases and give generously. In my mind, your article has helped to build bridges between persons saying ‘always medicate’ and ‘never medicate’. I hope you will be a guest writer again in the near future.
Terri
Virgil, thank you for this a wonderful article. Thanks also to Peter Earley for posting this. I, too, could not just walk away from Bob Whitaker’s book nor could I accept it entirely at face value without doing my own research into the complex questions it raises. This is not a discussion that is at its core pro or con the use of drugs to treat mental conditions, it is a question about the integrity of the research and the way in which research findings are communicated to both professional and laypersons. Observing the way that medical knowledge has been disseminated over the past 20 years makes it impossible for me as a practicing physician to not be concerned about our knowledge base. This is not a radical sentiment. Marcia Angel, the former editor of The New England Journal of Medicine, a premier academic journal, was one of the first to articulate this concern with ample documentation.
When I read the letters submitted by parents on this site, I understand and resonate wit their pain and their deep worry for their children. When I read the remarks of people who have been damaged and traumatized by their interactions with the mental health system, I also resonate with their pain and suffering.
I work in the public sector. Although we do not have the resources of Cooper Riis, I do think we could move a long way to improve the work we do. We can only do this if all of us can find common ground to come together to work on finding optimal solutions to the deep challenges that we face.
Dr. Steingard,
I have come across some of your posts from time to time on the internet, and I just want to say how I appreciate what you write. Patients need doctors like you. These debates often devolve into two extremes, and patients get caught in the middle. I tire of the argument that psychiatry is quackery, and that meds aren’t helpful, the assumption that I must have been duped by a mean doctor if I take meds, and so forth. Medication has both helped me and harmed me, there are no easy answers for me. The other extreme stereotypes patients with mental illness as small children who need to be protected from the truth about side effects and problems with the data, we apparently believe everything we read and hear because we’re addled in the brain, and we should just take our meds without question like good boys and girls. It gets a little old.
When I read your posts I am reminded of my own doctor, and I am very grateful for all the ways in which he has helped me try to figure out what would help me. He is honest about the risks of medications and weighs the risks with me. He’s willing to accept my questioning nature without feeling angry or threatened by it. Patients who feel heard and respected are more likely to be honest with their physicians. At least that’s been true for me.
So, for what it’s worth I’m glad folks like you are out there trying to improve things for the rest of us.
Thank you, Kristen. I appreciate your comments and I am glad that you have found a psychiatrist who respects you and is able to work with you in a collaborative way.
I believe that this is very much what Bob Whitaker would support. As I note above, the key issue is to insure that the data is presented as fairly and openly as possible so that each individual can make what are sometimes extremely difficult choices.
I know there are others out there like you and like your psychiatrist and I congratulate you for being brave enough to speak out.
I wish you the best.
Sandy
Dear Sandra, I am encouraged that you are creating a microcosm of healing in Vermont through your own public work. These principles can be replicated, and bridges can be built, albeit with a lot of work (and sometimes a lot of opposition). Thank you for your efforts!
Duane Sherry,
Thank you for adding yours, and, by reference, Jim Gottstein’s voices to this dialogue. I have met and dined with Jim and deeply respect his work.
Like you, I am worried about when those who promote the dogma “Medication is the Only Way” increase their focus on forced medication, advocating that it should become the more normal course of events than it is now. I, too, think that force should be used generally only when there is a reasonable and immediate concern about safety.
Given that I carry responsibility for the safety and welfare of others, I have on occasion (fortunately not often) decided to begin a course of events that has resulted in the involuntary commitment to hospitalization of someone. I have sometimes walked with and accompanied the person and the police during these interventions. It is always a difficult and tense time. Most often when this occurs, I have been involved with the person after the experience; sometimes, they have returned to our healing community.
The experience of involuntarily committing someone can indeed be traumatizing for them. However, it is still a necessary choice at times. As a caring society, those who are responsible for safety must sometimes intervene when the person of concern is in an extreme state of mind and can not provide during those moments for their safety or the safety of other around them.
Personally, I endorse intervention during these extreme moments but do not endorse intervention as a matter of course, simply to force the general use of medication.
Virgil Stucker
Virgil,
As somebody who was civilly committed against my will, http://www.madinamerica.com/2013/01/ny-times-invites-readers-to-a-dialogue-on-forced-treatment/#comment-19770 , I can tell you that it was the most humiliating experience of my entire life. In the country where this happened, “need for treatment”, which is a lousy standard that means “whenever a psychiatrist thinks it is necessary”, was used to commit me.
This traumatizing experience resulted, upon my return to the US (and a year during which I agree to go by the psychiatric nonsense) in me being divorced and estranged of my parents for having been enablers in such despicable abuse. I have been now be off drugs for a long time (the damage caused by them is now gone for the most part save a thyroid problem which seems to have become a chronic condition that will force me to take thyroid replacement hormone for the rest of my life).
I am against ALL forms of involuntary commitment for individuals who have committed no crimes whatsoever and I am an absolutist on that regard. So, from my side, there cannot be any kind of common ground with relativists who defend involuntary commitment in “some cases”.
M. Cannotsay,
I fully understand your position, given that you have been on the receiving end of being involuntarily committed. However, I still cannot share your absolutist position. One ‘consumer leader’ on the west coast told me, for example, that he was involuntarily committed and that he credits that experience with having saved his life. He is now leading a good life, contributing to the lives of others… no longer needs medications, but still looks back and is thankful that someone took charge of his life, when he was not able to do so.
Virgil Stucker
Correct Duane. For some reason many at NAMI never asked themselves whether the target of their alleged “help” want to be “helped” in the first place.
Without the issue of coercion, there would be no controversy whatsoever on psychiatry other than whether insurers should pay for the services offered by this quackery, just as it happens with homeopathy. All the evilness that comes from psychiatry is rooted in its legal ability to impose itself onto innocent victims.
I, for one, would not be engaged in the survivor movement if psychiatry was an entirely voluntary specialty. I only became aware of its evil practices after the quackery was imposed onto me. And I am only engaged now because I cannot close my eyes to the injustices that happen everyday in the US in this regard (even though the likelihood of me being committed in the US is close to zero).
There are many different kinds of community — I have been working with people who are homeless and mentally ill. I have been very pleased to connect with a group of young adults who formed a nonprofit called the Community Empowerment Fund in Chapel Hill NC . They have more than 80 undergraduate volunteers. They are not specifically working in mental health, but when I started working with them, I saw that they were doing things that are formal systems ceased to do – – in addition to practical tools for financial empowerment, they provide community. http://www.communityempowermentfund.org/
The clubhouse model of psychiatric rehabilitation, modeled after Fountain House in NYC, is also an example of community building in mental health.
So good to hear from you, Bebe… thank you for sharing your healing community experience with me and the readers.
For those who do not know Bebe, imagine a clinician who can instill hopes in her clients, some of whom have persistent psychoses. In addition, I know Bebe as an academic teacher who instills the hope of recovery in her students daily in the class room at UNC- Chapel Hill.
On the one hand, it is important to value healing communities. Additionally, it important to identify and nurture leaders like Bebe who have dedicated their lives and careers to the recovery experiences of individuals with mental health challenges.
Bebe, I hope you will find funding to spread you special educational messages across other University of North Carolina campuses.
Virgil
Virgil –
Thanks so much for your kind words.
For 17 years, I worked as as clinician with a focus on psychotic disorders in the Schizophrenia Treatment and Evaluation Program (STEP) in the UNC Department of Psychiatry. I was also involved in training psychiatry residents in the psychosocial aspects of severe mental illness. I am very much a social worker, and have provided very concrete assistance in helping people find housing and get connected to resources. Last year, I moved to the UNC School of Social Work, and hope to teach new mental health professionals how to infuse recovery principles into their work in mental health settings.
I’ve been thinking quite a lot about the complexity of where we are in the mental health community at this moment. We need to find ways to rehumanize mental health treatment. That will also require addressing human rights and social justice issues.
With the over emphasis on medications, we lost ground on psychosocial
treatment. We also have very clear disparities between mental health and
health.
There will be opportunities under the ACA, especially in the care of young people with emerging severe mental illness. We have an early psychosis program at UNC called OASIS. We have been able to infuse recovery principles into the treatment model at OASIS, which combines medical and psychosocial strategies.
Bebe
You charge $17,000 a month yet you’re a “non-profit”? What’s your salary?
Francesca Allan,
Happy to be transparent, Francesca. My salary is also posted on Guidestar, where the 990’s of all 501(c)(3) non-profits are posted.
First of all, our fees at CooperRiis start at a maximum of $14,500 per month, not $17,000. After the second month, we adjust our fees to whatever the family can afford to pay and offer scholarships for up to 24 months. (There is no minimum rate.) These scholarships total about $2.5M a year. About 50% of our residents are on scholarship. We receive no public funding. Sometimes medical insurance will pay for the first two months.
We have a budget in excess of $10M a year, which covers the cost of 155 employees who serve the needs of about 100 residents. As the executive director, at the age of 61, I earn up to $200,000 a year. This works out to be about $48/hour. My work as Chairman of the Foundation is not compensated.
I am happy to answer any questions.
Virgil Stucker
I read your book, Crazy, and I was disheartened but not surprised by what I found in its pages. I, too, have had experience with our public mental healthcare system, and find it is seriously lacking. I found it wanting in the arenas of compassion for the mentally ill (many facilities are run solely by technicians who do not have much in the way of training), respect for the mentally ill as people with minds who do think about may things, and the response to an outburst is to immediately administer some form of anti-psychotic; everything from old standbys like Haldol to newer anti-psychotics such as Zyprexa which will quell the outburst within an hour if administered in IV form.
Wanting to stay on topic, I read the article by Robert Whittaker, and I did not see him asking for all patients to forego medication as treatment. What medication does need to be is part of a system of treatment. It needs to be monitored by a qualified M.D. preferably someone who has specialized in mental health care.
There also needs to be more community funded clinics where the mentally ill can go to receive free or sliding scale treatment so they don’t end up untreated and on the streets, or using jail as their treatment facility. How is a schizophrenic or any of the more severe mental illnesses who are off their meds and are psychotic going to remember to take medication? A lot of people with mental illness require a certain stability of routine in order to manage their illness (this is just my personal experience and observation).
There needs to be open dialogue, not arguing over the best approach, because there is no “best” approach. If a person requires medication in order to function, then use it. If a person can use talk therapy to manage their disorder, then go that way. For myself, it is a combination of the two. However, quite frankly, I think with the number of mentally ill people in our communities, there needs to be ongoing, open and non-stigmatizing dialogue until reform is achieved.
When I say ongoing, I mean exactly that, dialogue needs to break free from the media’s portrayal of mentally ill people. We are not “crazy” and scary people who are going to go off at any second and shoot up a mall, or a school. While those individuals were most certainly troubled, there are millions of us just trying to live with illness, and get as much help as we can from legitimate sources.
Communities need to divert more funding to helping the mentally ill. Just think that with proper medication, and therapy, how much further someone with mental health issues could go in life? The Federal government has its own role to play in reform. There are billions of dollars being spent on dubious things and activities. Why not channel some of that money into the infrastructure of the country including help for the mentally ill?
I know all about living with mental illness every day, and taking medication to help manage the symptoms along with talk therapy. I, myself, have been diagnosed as a Bipolar type I with psychotic tendencies, a person with PTSD, ADD, and Panic disorder with and without Agoraphobia. I have no problem telling anyone about my daily struggles against these disorders because I do believe the more informed the public is, the more that veil of stigma will be raised.
Thank you.
Dear Pete, Angry Mother, Robert Whitaker, Virgil and everyone who has participated in this ongoing dialogue,
Thank you all for bravely asking these difficult questions, sharing your heartfelt and passionate concerns, your pain, and your hopes for healing.
Suffering, healing and loving, for that matter, is not for the feint of heart. It is courageous and sometimes terrifying work. My heart goes out to everyone on every side of this debate. There is no easy place to stand.
Thank you Virgil, for advocating bridges that make room for all of us to find healing (of our own choosing, in our own time, and with our dignity and liberties intact).
On a recent Huff Post blog, another medical reporter asked if journalists ought not to report things that might sway public opinion in matters of life or death (or, it appears, even elective eye surgery).
Perhaps because I am the mother of two school-aged girls who are learning about U.S. History, I am reminded of the vital role journalism played in our fight for freedom from British tyranny. Lives were most certainly at stake. And many were lost. And perhaps more were saved.
I do hope we can continue to have these public conversations. With all due respect for their potential impact.
Thank you Pete, for creating this forum for many voices to be heard.