Dec 27, 2013

Can NAMI survive E. Fuller Torrey’s culture war?

The new boss at NAMI hasn’t arrived yet, but E. Fuller Torrey has a list of her known associates and is already on the attack. Pete Earley sees this as part of a culture war within NAMI (a mental health group I have generally supported, and have occasionally worked for, since the 1990s). Earley writes
Torrey has become the de facto leader of the so-called “NAMI CLASSICS” who believe NAMI should focus on serious mental illnesses, such as schizophrenia, bipolar disorder and depression. This group is largely pro-medication and pro Assisted Outpatient Treatment laws, which require individuals who have multi-hospitalizations and/or violent pasts to be forcibly treated. In recent years, more and more consumers  (persons with mental illnesses) have joined NAMI and they often oppose “paternalism” in favor of self-determination.
Although Torrey helped build NAMI into the most influential mental health organization in the nation, he angered many when he created his own non-profit, the Treatment Advocacy Center, to push for passage of AOT laws as well as other changes. A favorite speaker at past NAMI national conventions, Torrey has not been invited to speak in recent years and the last time his name was raised, some board members threatened to boycott the convention if he appeared. This year, NAMI invited journalist Robert Whitaker, known for his books that question the use of anti-psychotics,  a move that would have been unheard only a few years ago.
NAMI has been undergoing a culture change for quite a while. One factor behind this is the mere passage of time. After some 35 years of organizational existence, NAMI has outlived many of its founders. Plus, nowadays, most Americans with mental illness have never been hospitalized, and have only lived in a deinstitutionalized world.

In addition, issues relating to mental illness are so raw, so difficult, so complicated, it’s almost an injustice to say there are two factions within NAMI. I think it is more useful to say that there are a million issues within NAMI, and each of these issues has at least two sides. Mental illness is a big slice of the universe. It has its own politics, its own economy, its own connection with justice, and thousands of years of violence, trauma, shame, and shunning-driven history to give it a bitter sort of flavor.

My position on Torrey and his group is pretty straightforward. I think Torrey is right when he says we need a mental health system that addresses society’s toughest situations. Torrey’s group, the Treatment Advocacy Center, helped some of my friends try to reestablish contact with their son, who was living in horrific circumstances. On the other hand, I really dislike Torrey’s politics. He is an old-fashioned authoritarian who has been attacking the most benign and progressive aspects of US mental health policy for at least two decades. He has gained traction on the right-wing publicity circuit since Newtown, mostly because he offers the gun lobby a diversionary tactic, and is not completely off-base. Torrey’s work is behind the worst parts of Tim Murphy’s proposed mental health reform legislation (the parts that muzzle advocacy groups and gut funding for nonclinical recovery organizations).

I believe NAMI can avoid a culture war by making the most of its new-found and hard-won diversity. NAMI can advocate for smart, nuanced approaches to complex issues.

For example, what Torrey gets most wrong is his focus on the “most serious” cases. This sounds sensible at first, like triage on the battlefield, but in the long run does not work. Less serious cases need resources too, and fast. They cause the largest impact on the economy, and disrupt many more people’s lives. Unresolved mild cases eventually become severe cases. A better policy position is to say that everyone who needs medical care should have prompt access to the right kind of treatment.

Torrey has been writing about the loss of hospital beds for the last year or so.  He pines for the bygone days of big asylums. Some people do need a long-term residential solution for safety reasons, but they are such a tiny minority of the population. Do we need huge hospitals? No. Bigger facilities do not create better clinical outcomes. On the other hand, we do need enough capacity throughout the healthcare system so everyone can have access to the intensity of service and the structure that they need.

Assisted Outpatient Treatment (the kindest possible term for Treatment By Force) is no panacea either. The practicalities of modern life make institutional confinement impossible for many people who are not safe without treatment, and people deserve choices regarding type and dosage of medicine. This is violent coercive state action, about as welcome as a shock collar or a house arrest ankle monitor. Torrey never admits that involuntary treatment can be as traumatizing as a rape.

NAMI would do well to resurrect the Alliance part of its organizational heritage. The essence of alliance is collaboration, not control. Collaboration is possible even when there is such complexity and so much suffering on every side. We want solutions for everyone, a way for everyone to succeed, a way for everyone to reach their fullest capacity, and to contribute their gifts and talents as they make progress.

I think the future of mental health involves more complexity, not less. Nonclinical solutions, more peer support, more disclosure, less stigma, some honest talk about safety, better clinical process, more family involvement, better housing. We need whole-system solutions. Everyone needs a chance to pitch in.

Dec 24, 2013

Redesigning Recovery

Every time I revise my book Defying Mental Illness  (it's an annual, like What Color Is Your Parachute) , my view of mental health recovery becomes more positive.

If you think about recovery in terms of human development and social roles, then recovery is about getting back on track with life. This may take time, and medical care, and the support of friends and family, but most people get there.

The 2014 edition of Defying Mental Illness is available in print here and is working its way towards Amazon and other book distribution, but the ebook reader versions (as well as online views and PDFs) are available now. Download the free sample, or read it online, and you’ll see what I mean.

Please let me know what you think.


Nov 26, 2013

Adam Lanza's suicide ignored by state report

The Connecticut State Attorney’s report on the Sandy Hook shootings details the horror but misses the point. Adam Lanza prepared and rehearsed for violent suicide, and obsessively studied mass murder. In the days leading up to the incident, it became clear that he was about to lose his way of life.  Sandy Hook was a suicide, with mass murder tacked on.

If the State Attorney sought help interpreting the mental health aspects of the case, the report does not show it. It displays shocking, almost willful disregard of mental health and suicide. The report is available here.

The report minimizes Adam Lanza’s problems. It states
He was undoubtedly afflicted with mental health problems; yet despite a fascination with mass shootings and firearms, he displayed no aggressive or threatening tendencies.
It ignores
In seventh grade, a teacher described the shooter as intelligent but not normal, with anti-social issues. He was quiet, barely spoke and did not want to participate in anything. His writing assignments obsessed about battles, destruction and war, far more than others his age. The level of violence in the writing was disturbing.
The report does emphasize Lanza’s inability to connect socially. For example, in 2005 (seven years earlier, at age 12 or 13),
[Lanza] was described as presenting with significant social impairments and extreme anxiety. It was also noted that he lacked empathy and had very rigid thought processes. He had a literal interpretation of written and verbal material. In the school setting, the shooter had extreme anxiety and discomfort with changes, noise, and physical contact with others.
Lanza had a mental health diagnosis, but no follow through. Even though in 2006 an evaluation noted
His high level of anxiety, Asperger’s characteristics, Obsessive Compulsive Disorder (OCD) concerns and sensory issues all impacted his performance to a significant degree, limiting his participation in a general education curriculum. Tutoring, desensitization and medication were recommended. It was suggested that he would benefit by continuing to be eased into more regular classroom time and increasing exposure to routine events at school.
Nonetheless
The shooter refused to take suggested medication and did not engage in suggested behavior therapies.
Lanza lived a strange, weirdly isolated life. He appears to have been addicted to isolation. His mother enabled and perpetuated that life.
The mother did the shooter’s laundry on a daily basis as the shooter often changed clothing during the day. She was not allowed in the shooter’s room, however, even to clean. No one was allowed in his room.
The shooter disliked birthdays, Christmas and holidays. He would not allow his mother to put up a Christmas tree. The mother explained it by saying that shooter had no emotions or feelings. The mother also got rid of a cat because the shooter did not want it in the house.
Prior to the shootings, despite this enabling, codependent behavior, Lanza was rejecting his mother along with everyone else.
One witness indicated that the shooter did not have an emotional connection to his mother. Recently when his mother asked him if he would feel bad if anything happened to her, he replied, “No.” Others, however, have indicated that they thought the shooter was close to his mother and she was the only person to whom the shooter would talk.
A person who knew the shooter in 2011 and 2012 said the shooter described his relationship with his mother as strained because the shooter said her behavior was not rational.
Beyond the evidence of social disconnection, the report identifies clear evidence Lanza was preoccupied by self-inflicted violent death. He assumed suicidal poses, and memorialized them. Among the evidence found in his home were the following:
Three photographs of what appear to be a dead human, covered in blood and wrapped in plastic
Two videos showing suicide by gunshot
Images of the shooter holding a handgun to his head
Images of the shooter holding a rifle to his head
This collection of images is plain evidence of suicidal preparation and intent. As the incident approached, Lanza had become even more isolated. He knew his isolated lifestyle was threatened. He was about to be forced out of his place of refuge.
In November 2012, the mother … was concerned about him and said that he hadn’t gone anywhere in three months and would only communicate with her by e-mail, though they were living in the same house. …
The mother said that she had plans to sell her home in Newtown and move to either Washington state or North Carolina. She reportedly had told the shooter of this plan and he apparently stated that he wanted to move to Washington. The intention was for the shooter to go to a special school in Washington or get a computer job in North Carolina. In order to effectuate the move, the mother planned to purchase a recreational vehicle (RV) to facilitate the showing and sale of the house and the eventual move to another state. The RV would provide the shooter with a place to sleep as he would not sleep in a hotel. In fact, during Hurricane Sandy in October 2012, with no power in the house, the shooter refused to leave the home and go to a hotel.
Lanza may have told his mother he was willing to move, but his actions say otherwise. Without the context of Lanza’s world collapsing and his suicidal intent, there would have been no Sandy Hook tragedy.

Suicide risk involves three factors:

  1. Thwarted belongingness. A perception, belief, or feeling of disconnection or alienation from others.
  2. Thwarted effectiveness. A perception, belief, or feeling of failure or worthlessness, or that one has become a burden on others.
  3. Acquired capacity for self-harm. A kind of fearlessness, recklessness, or immunity to pain, which is gained through experience of painful injury, prior self-harm, or through practice of another sort.
Once a person gains the capacity for self-harm, it is difficult to lose it. Risk factors related to thwarted belongingness and thwarted effectiveness include the following.
  • Depression and other mental disorders, and/or a substance-abuse disorder. More than 90 percent of people who die by suicide have these risk factors. Family history of mental disorder or substance abuse. People with borderline personality disorder experience high levels of alienation and feelings of worthlessness, and have extremely high suicide risk.
  • Failed relationships, financial loss, or loss of status. Criminal behavior, impending lengthy incarceration. Other shameful circumstances. Disgrace. Shunning. Bullying. Religious or ideological failure.
  • Disability, aging, loss of autonomy. Reduced capacity for self-care. Inability to ensure safety of a dependent spouse or disabled adult child.
  • Cognitive distortions, delusions, paranoia, rage.
  • Frequent nightmares, lack of sleep.
Risk factors related to acquired capacity for self-harm include the following.
  • Prior suicide attempt (puts the person at highest level of risk).
  • Exposure to the suicidal behavior of others, such as family members, peers, or media figures.
  • Exposure to violence, including physical or sexual abuse. Exposure to the violent behavior of others. Family violence. Occupational violence, especially for public safety workers. Combat violence. Incarceration.
  • Pain and injury, especially self-injury. Multiple surgeries. Frequent tattoos and piercings.
  • Risky and reckless behavior, provocative experiences. Disruptive behavior.
  • Substance abuse. Medication misuse.
  • Firearms in the home (the method used in more than half of suicides). Firearms, suffocation, and poisoning are the most frequent means used to commit suicide.
  • Vicarious experiences. Opportunities to practice, plan, and contemplate self-harm. Violent media, video games.
  • Changes in mental health medication. People may become activated as medication takes effect or wears off.
These factors may be common and ordinary and shared by many people, nonetheless given the sheer quantity of risk factors accumulating around Adam Lanza, suicide stands out as the primary motive for the Sandy Hook tragedy.  The rest was theater, an attempt to create a memorable end. Because Lanza had no social connection with anyone, he was capable of taking on a horrific role, one that nonetheless fascinated him, the school shooter. Among the evidence seized from the Lanza home:
  • A New York Times article from February 18, 2008, regarding the school shooting at Northern Illinois University
  • The book Amish Grace: How Forgiveness Transcended Tragedy (about a school shooting).
  • The computer game titled “School Shooting” where the player controls a character who enters a school and shoots at students.
  • A document written showing the prerequisites for a mass murder spreadsheet
  • A spreadsheet listing mass murders by name and information about the incident
  • Large amount of materials relating to Columbine shootings and documents on mass murders.
It does no one any good to perpetuate the myth that suicide-murders are inexplicable. Willful ignorance endangers people, as the Sandy Hook tragedy shows.

Nov 20, 2013

America's Disparity Dust Bowl

In many Cincinnati neighborhoods, and in communities across America, people are suffering. Economic disparities, educational disparities, health disparities, drugs, crime, violence, and the gradual erosion of supportive cultures have left substantial numbers of Americans stuck where they are, unable to make progress in their lives.

This stuck point has the potential to become a starting point. However, existing social service and economic development models have not stopped the pileup of disparities and societal consequences, and have not proven capable of delivering health, peace, and prosperity to disadvantaged populations.

Consequently, America’s “stuck people” find themselves living in a devastated environment of trauma, crisis, and disorder. This is a Disparity Dust Bowl. Research tells us that this affects people in significant ways.

Thinking is affected. Trauma, medical issues, and adverse life events cause people to lose “executive function,” the ability to make plans or take action when there are no clear guidelines.

Feelings are affected. People who experience trauma early in life have difficulty regulating emotions. Poverty, separation, and loss generate shame, fear, sadness, loneliness, and anger. Unfortunately, American culture makes it difficult for people to rebuild the capacity to be vulnerable and trusting. This is a key step in resolving shame, overcoming the negative emotional burden, and achieving the level of emotional regulation essential to success in educational settings and the business world.

Relationships are distorted. Social relationships facilitate every type of learning, in part through the psychological process of modeling, but after generations of life in the Disparity Dust Bowl, there are few positive, capable models to be had. This distortion becomes magnified by insidious cultural forces. Once disparity-distorted thinking infects popular culture, positive people become social outcasts.

Information is missing. Time and technology move forward even if people are stuck in troubled circumstances. Resource disparities limit opportunities to travel and explore the larger world.

Marginalization increases exponentially over time. The inherent human process of labeling, social distancing, and stigma assigns people to disadvantaged or devalued categories, and dishes out unequal results. Teachers drawn from disparity-afflicted cultures share many disadvantages with the people they serve. Public resources are often withheld from low-income institutions. Even brilliant students remain disadvantaged compared to those outside the Disparity Dust Bowl, because they lack access to broader social context.

Today's Disparity Dust Bowl has become a complex system driven by negative thinking. It operates with relentless self-reinforcing logic. Once economic, health, and power disparities combine with the innate human processes of stigma and social distancing, people who experience disparities are labeled not only as less advantaged but inherently deficient.

The deficiency driven system constantly measures and reports the extent of personal deficiency. People come to adopt their labels as their core identities. This process drives cultures to a tipping point. Once enough individual people are labeled as failures, entire populations become blind to their strengths. Without strengths to draw on, people get stuck.

What is needed today are techniques that get people unstuck, methods that promote cognitive function, support emotional regulation, encourage healthy relationships, and motivate people to overcome barriers such as information deficits and marginalization. We need to help people rediscover the innate human problem-solving toolkit, so they can engage the world from a position of strength. And everyone who works to reduce the effects of the Disparity Dust Bowl needs tools that reveal the strengths of the people they serve.

I have spent the greater portion of my career trying to identify methods with sufficient power to address the effects of the Disparity Dust Bowl. Achieving “somewhat less deficiency” is not enough. In order to counter the effects of a deficiency-driven system, we must challenge the logic of the system itself. We must maximize and mobilize innate strengths, and develop capacities from there.

Nov 11, 2013

Changing whole cultures to stop addiction and achieve better health

I wrote a few lines for a massive new publication detailing what it takes to address the epidemic of heroin addiction and overdose death now playing out in Northern Kentucky. 

The story appeared in the Cincinnati paper yesterday. The 50-page report, one of the best analysis and action plans I have ever seen addressing addiction and overdose death, is available here. When I read the report I found to my surprise that an excerpt from my contribution was the last word, the call to action. 

Here's my whole essay.

Addiction and mental illness is personal, but when problems pervade whole cultures, we need a whole-culture solution too.

What does it take to create a culture of safety and good health?

Life is an immersive experience we are all adapting to. The culture of addiction and sickness is really a kind of narrative, a movie – and we are living in it. People act out the movie that’s running in their head. When the movie changes, people change, and their actions and relationships change.

Time and technology have changed how people experience the world. Through the 19th Century, the experience of the world was natural, concrete and local, bound up in family experiences, structured belief systems, and local cultural experiences. Today’s world is a different movie, with a narrative built from instantaneous communications and mass media. Even so, the genuine experiences of life continue to deliver the most powerful wallop.

Person-to-person interactions, genuine relationships, family life, travel, work, and neighborliness connect with our essential natures, and retain great power and influence. Pathways to personal change still involve relationships, transformative experiences, shared culture, stories, learning, and growth. Sustaining personal change takes motivation, an ideology or program of recovery, commitment, and mutual support.

The cultural environment shaping people’s stories can be influenced using all the tools of modern life. We can create a culture of safety and good health, built from positive stories of resilience and transformation. We can make it easier to build relationships with people who have overcome challenges, and are themselves transformed. This paves the way for the meaningful talk, person to person. Anonymity is proper for individual work or intensive work – but the larger world needs characters and a story line, a movie to walk into and live out.

We can build a cultural narrative of safety and sobriety using the same techniques that consumer products firms use to influence customer behavior. Make it understood, easy to do, desirable, rewarding, and a habit. Let people see the proof and payoff.

Oct 20, 2013

Christian stenographer's rant offers clues to mass violence

Last week's outburst by House of Representatives' official stenographer Dianne Reidy is a mild lesson about stress, pressure, boundary crossing and violence.
This image (c) 2013 Paul Komarek

At least one anti-government blogger is claiming that the government has declared Christianity crazy. Take a look at the commentary and video here.  I certainly don't think Christianity itself has been declared a mental illness. It was the disturbance, the ranting and disruption, more than the content of the words Mrs. Reidy said, that caused her to be ushered off stage, and referred for a check-up.

What I find interesting is the violence in this incident. Mrs. Reidy's outburst was a mild example of expressive violence, the kind of incident that happens when stress and tension is so high a person violates a conduct boundary and acts out.

This is exactly the pattern playing out in most mass-shooter cases. People under pressure become so stressed, so anxious, so pushed by the thoughts in their head, the emotions they feel, or the pain they are experiencing, they are driven to act out -- even if this violates basic rules of normal life. Once a person crosses that threshold, almost anything can happen, depending on the nature of the person's grievance or distress, and what the person is capable of doing. If the person regards himself as willing to do violence, and there is access to weapons, things can turn bad fast.

Friends, family and neighbors might see  clues about what the person is experiencing. They might be able to keep the crisis from ever happening by providing effective support, the right referral, or a healthy way of addressing the tension.

Mrs. Reidy and her family believe the outburst was the work of the Holy Spirit. They view the four weeks of sleep disturbance that preceded the incident as a period of spiritual discernment.

But what if what happened turned out to be more serious? Think about Aaron Alexis and the DC Naval Yard shootings. We can't disregard real-life trouble just because a person also has faith.

Mrs. Reidy's husband, a pastor, said that he would have tried to dissuade her. 
“If she had told me, ‘I think God wants me to get up and say something,’ I’d be the first one to say, ‘No you don’t!’” he reports.

Oct 15, 2013

The short shelf life of mental health theories

The way we think about mental health might be seriously out of date.

The author Mary Pipher notes that much of what we believe about human behavior comes from outdated theories connected with long-gone times and cultures. In her 1996 book The Shelter of Each Other, Pipher writes
Theories have zones of applicability and work best for particular places and times. Freud knew middle-class families in Vienna in the late 1800s and Perls knew German families of the 1940s and 1950s. The dysfunctional family theory worked best for the families for whom it was invented, those of longtime alcoholics. The humanists understood American families in the 1960s. Most children had two parents, one of whom was a stay-at-home mother. Parents had more control, communities existed, and families had walls. Certain kinds of therapies made sense. But psychological theories have a short shelf life. Our old ideas about how to help are useless in the face of new realities. We attempt to solve problems with theories developed for a world that no longer exists.

...

Many theories are as out of place and time as dinosaurs in a shopping mall. How do we discuss sexual repression in the world of MTV? How would Alice Miller handle date rape? How would Fritz Perls help a family who lost their only source of income in a corporate takeover? Each of these therapists was helpful in his or her own time. But in a war zone, it’s crazy to ask people if they were breast fed as babies or to analyze their dreams.
Pipher goes on to identify some of the weaknesses of family therapy.
Ten mistakes that therapists make.
1.    Family is the cause of all problems.
2.    Therapy has been hard on women.
3.    Therapy has pathologized ordinary human experience and taught that suffering needs to be analyzed.
4.    We have focused on weakness rather than resilience.
5.    Some of our treatments have created new problems.
6.    We have encouraged narcissism and checked basic morality at the doors of our offices.
7.    We have focused on individual salvation rather than collective well-being.
8.    We have confused ethical and mental health issues, empathy and accountability.
9.    Some therapists abuse their power.
10.    We’ve suggested that therapy is more important than real life.
The lessons for the world of mental health is that theories don't last forever, and methods don't stay mandatory. We are free to learn from what we have done in the past, and adapt to what we face today.

--
Photo: Harvey Washington Wiley, a food-safety crusader, at left.   (Wikimedia Commons)

Sep 20, 2013

Aaron Alexis and the demon delusion

There is an out-of-character vibe to the Navy Yard shootings. A good guy, but big trouble. Intentional, planned violence. It's the kind of situation that generates talk about demons. Would an exorcism have derailed this particular murderous plan?

Maybe it would -- if a concerned knowledgeable spiritual advisor knew enough about the risk factors for mass violence, and took other steps to protect the shooter and the public too.

Mental health and addiction problems are said to be "biopsychosocial" meaning they have biological, psychological and social components. If we add a spiritual component, then we have four ways to approach the problem.

Interventions gain strength when they are stacked up. Medication for the biological, therapy for the psychological, the comfort of family and friends for the social, plus prayer and spirituality. All four, not just one. Demon-blaming can't stop bullets.

What Aaron Alexis needed was a realistic face-to-face discussion about what he was experiencing, and about what he might do to alleviate his suffering and stay safe, and about what was too risky for him and for others. A positive course of action, including accompanying him to a doctor and ensuring that his true concerns were revealed to someone who can take the next steps. Suicidal people often visit doctors with minor complaints, failing to reveal suicidal thoughts to the medical team. Friends and family can help make sure the doctor gets the full story. Alexis was also taking an antidepressant, which sometimes can spark thoughts of suicide or activate a person with thoughts of causing harm.

A spiritual discussion or a prayer or an expression of sympathy is not a strong enough dose of intervention for a person in crisis who is experiencing paranoid thoughts and who has a history of violent impulsive behavior. This is a high risk issue that must be confronted powerfully.

People who work with high-risk populations in jails or community settings know that people can't be trusted to reveal their suicidal or homicidal plans. People in charge construct protocols that ensure safety even when a person hides or disguises his true intentions. This is easier in an institution than it is in community settings. It is a stigma-connected blind spot for security agencies and law enforcement. People who think mental illness is too scary, too hard, too inexplicable or too mysterious find it easy to ignore signs of trouble.

But mental illness is not that complicated. It's thinking or feelings that are out of bounds or off the scale, plus issues relating to safety and risk. Nonclinicians don't have to diagnose anyone, just do their part to provide support, connect with other resources, and help a person stay safe. Sympathy should not displace realistic approaches to safety and risk.

Sep 18, 2013

Mental illness is broken

I think the whole experience around mental illness is broken, a total systemic failure.

Systems have life cycles. They start out along a spectrum from randomly generated (through tradition, for example) to thoroughly designed.  Whichever way they start, they follow wobbly patterns ranging from controlled to out-of-control, effective to ineffective, sustained to out-of-resources.

A problem-solving system such as education or criminal justice or healthcare starts out with formal elements (schools, courthouses, hospitals), plus basic  professional structures (doctors, lawyers, teachers) plus broad policies (constitutions, degree programs, practice guidelines) to guide future action.

In the operational stages, professionals and governing bodies develop traditions or protocols, and deliver services to the people who interact with the system. These decisions pile up. They affect how the system operates as a whole in the future.

An operational system that is supplied with sufficient resources delivers a satisfactory range of outcomes, aligned with the expectations of its governing authority, professionals and service users. But when systems fail, people suffer.

Signs of system failure include:

- High numbers of poor outcomes
- Collateral damage
- Correct decisions that create harmful social consequences
- Absurd outcomes
- Bad rhetoric
- Political correctness
- Not reaching people in time
- Waiting lists
- Case processing backlogs
- Restricted access to techniques that work
- Treatment protocols corrupted by service-rationing
- Turf issues focus on avoidance of responsibility
- Resorting to primitive methods, e.g. shunning, shaming, coercion
- a professionalized environment but professionals can't do what counts
- dehumanization of service users
- Frail (non-resilient) systems
- Financial incentives for delivering poor service arrays
- Poor geographic distribution
- Corrupt practices

Whether failing or functional, no system is perfect. Systems always fail some portion of the constituency they are meant to serve. Complex dynamic systems have multiple capacities, patterns of strengths, blind spots, weak spots, clumps of capacity, and specific trouble points. After a while, all of these are noticed, but only rarely are they seen as system failures. They are usually interpreted as aberrations no matter how frequently they show up.

Fixing failed systems

For any system, it is possible to map out problems, and add non-system resources to compensate. These non-system resources, generally speaking, involve either money or people. Unfortunately, unless the logic and infrastructure of the system are actually fixed, this strategy just adds more of what  is already not working.

The most comprehensive approach assumes that everyone inside and outside systems can help, and that every aspect of the system is worth questioning.

Every option is optimal for something. We can find out what people can do, what they like to do, and what they are are willing to do, and use these capacities in the discretionary space within the system and in places where the system does not operate.

We can also try to identify techniques which are professionally designed and validated, but that can be adapted and used by non-system personnel.

If the system is broken, the most urgent questions are "What is our most helpful, least toxic, least costly option?" and "What can we do that's just as effective but not as harmful as what the system offers today?"

Sep 12, 2013

It’s time to shut down community mental health

Evidence is mounting that America’s community mental health system is just a passing phase. The system is under-designed for the task it faces, under-funded for the mission it is permitted to address, administratively fragile, locally corrupt, and too deeply connected with stigma to justify sustaining as anything other than a transitional phase in the evolution of American health care.

Under-designed. State asylums addressed both housing and health care for the populations they served. De-institutionalized system are treatment-only, and further limited because they only address the mental health component of a person’s overall health. Consequently, people with mental illness experience more homelessness and poorer overall health than other Americans, even those with other chronic health conditions.

Under-funded. Over time, managed care practices and funding decisions have resulted in a system where care is both rationed based on clinical need or other factors, and stretched out through technology. Insurance companies have focused almost exclusively on medication for outpatient care, rarely make psychotherapy available, and restrict access to family therapy and other more intensive treatments. In many areas of the country, patients wait for months to access psychotherapy delivered through a video system. This does not meet anyone's "best practice" standard.

Administratively fragile. Mental health providers are often fully-funded by Medicaid and other public dollars, and prepaid for services they contract to perform. Meanwhile, the people to be served are assigned to treatment agencies, denied the opportunity to choose their own provider. When regulators reclaim misspent funds, the result is service cutbacks that leave captive constituencies with zero recourse.

Locally corrupt. In many states, publicly-funded mental health services are no-bid contracts with no limits on executive compensation or administrative costs. This leaves new providers without opportunity to compete, as entrenched systems become self-reinforcing if not pay-to-play.

Deeply connected with stigma. In many places, mental health treatment providers continue to regard the people they serve as defective, perpetually dependent, discredited, and deserving of inherently coercive, degrading treatment approaches.

The bottom line: If what we have now is just a system of de-institutionalized asylums, we must redesign the whole thing.

Readers, what do you think? Is the community mental health system worth preserving, or should we just move on to something that's different and better? What do you think that might look like?
By the way, for some of my ideas on what it will take to fix mental health, start here.

Sep 4, 2013

Psychiatric Survivor Manifesto

Corinna West and I have been having a dialogue during 2013 about the core beliefs of the psychiatric survivor movement, and about points where her beliefs and mine are compatible. We've both had so-called "lived experience" and put the lessons of  our personal recoveries into what we write. My book Defying Mental Illness has a fair amount of content she objects to. I find much wisdom in what Corinna writes.

Corinna has just written a piece that tries to express the beliefs of the psychiatric survivor movement. It's a document in the Alternatives 2012 Facebook group page. Doesn't most of this sound, for lack of a better word, normal?
Psychiatric Survivor Manifesto
By Corinna West
   There are many reasons for extreme emotional states or biocognitive challenges. These often come directly from life situations that overwhelm a person's social supports. Increased community engagement and mental health prevention can greatly reduce costs, improve human rights, and increase recovery rates. A model that views all emotional distress adas a chemical illness which is best chemically treated has scientific limitations. This “disease model” approach, also called the “medical model,” has been shown to help some people, but it harms many others, and it may be increasing the amount of disability in our country. Instead, we want people who have completely recovered from mental health crises to share what was most effective for them. We can help our peers strengthen social supports, find someone who's been there before, and link people to their personal power.  We know how to come through the fire. We've done it.

   This is a summary compiled by people in the mental health civil rights movement. Some of us call ourselves psychiatric survivors, one who has survived psychiatric treatment, not the “illness.” Many of us have found scientific evidence and our own personal experiences showing that emotional distress is not an illness. We have found recovery using a variety of approaches and methods, but here are several concepts of hope and empowerment repeated in many of our personal stories.

6 ideas for complete mental health recovery compiled from psychiatric survivors.

1) Use prevention services instead of crisis-only services. This avoids a repeat of negative experiences based on coercion and force. Up to 40% of people admitted to a mental hospital have never received any kind of peer support or community care, which would greatly lower treatment costs. Peer support centers like nationally recognized S.I.D.E. in Kansas City, KS, have been able to increasingly carry this first contact burden through recent budget cuts.

2) Focus on recovery and wellness. Over 60% of the early mortality to people with mental health labels is due to preventable physical illness. Focusing on total body health, with choices made by each service recipient, greatly improves outcomes. The mental health center coalition in Kansas City hosted a walking challenge where agencies competed to post the most steps taken,, and many participants got to see their city in a whole new way. Also, use existing community services like sports or hobby or faith based activities. A day of community mental health center treatment is 1/16 the cost of jail treatment, and 1/40  the cost of a day in a mental hospital. But finding support and encouragement already in the community, before people are completely overwhelmed and seeking medications and diagnoses, is an even more powerful source of cost savings.

3) Let people know that emotional distress can be temporary and transformative. There are very many valid definitions of recovery, but “all this goes away,” is still the most hopeful and encouraging. Let people meet mental health care graduates and learn their methods. Poetry for Personal Power is a Missouri statewide stigma reduction program where hip hop artists and spoken-word poets share that emotional distress can come from many resolvable sources. These include trauma, lack of social connection, job fit or career goals, grief or loss of hope, spiritual unrest, drug use, nutrition or self-care habits, or brain injury. According to national advocate Duane Sherry, “Psychosis is an event, not a person.”

4) Used nuanced approaches to medication. We ask for fully informed medication use, where all people get honest information about long term efficacy, the risk of worsening a situation, the link between violence and medication use, and the difficulty of medication withdrawal.  Without a complete assessment of this data, none of the decisions made in mental health care are very accurate. Wellness Wordworks, a Mind Freedom affiliate in Kansas City, has shared extensive information about safe, supported and meticulously planned medication reduction strategies. Community mental health centers that shared this information and monitored doctors who repeatedly violated good clinical practice could greatly reduce medication costs. If a life situation caused a person's emotional distress, the solution will likely be a life situation change, not a chemical change.

5) Genetic research should have peer input and honest reporting. The vast majority of mental health research funding goes towards a “disease model” perspective. There is limited use in searching for physical causes of emotional distress in complete separation from a person's life situations. Reports should be honest that a genetic correlation report is meaningless unless both linkage and association studies can be paired. Truman's Prime Time peer support center instead has participated in research that was presented last week on a national webinar to show how all peer support centers can improve their services to promote recovery.

6) Give people in emotional distress a map out of that distress: 1) know that handling adversity is universal human experience, 2) talk to people who have been there before 3) resolve the overwhelming life situations, and 4) find what gives you Personal Power. The Common Ground program at the Wyandot Mental Health Center shares stories of personal power gathered by Patricia Deegan, a person who completely recovered from schizophrenia.
I think this approach is thoughtful and valid in many respects. Notice how much wisdom is evident after you scratch out whatever words you don't like.

Update:

Today's consumer/survivor movement of course has its roots in the experiences of the post-deinstitutionalization era. There's a history to all this. People may or may not reject the underlying medical theory around mental health issues, but there's been a long history of people seeking to create an experience of community and mutual support around mental health. Here's a video about the MPA, an organization that began in the early 1970s in Vancouver. Notice the tension between the experience of community and self-advocacy, and the necessity of an institutional framework in order to deliver services. Learn more about the film here.




Aug 25, 2013

No Medicaid Health Homes for Ohio

Ohio is backing off plans to add primary care clinics to its network of community mental health centers. The plan for so-called Medicaid Health Homes failed because it adds unrecoverable expense to a system where every single dollar is already tied up.

This should not come as much of a surprise for people familiar with Ohio Medicaid payment issues. I’ve served on the governing board of a neighborhood health clinic, a Federally Qualified Health Center (FQHC). Even with the enhanced payments we received under this program, we could never find a way to add mental health or addiction treatment to our standard menu of primary care services. I attended workshops and seminars to learn how to parse primary care organization billing codes, but what we found is that the system won’t support what actually works. When a person comes in for a primary care visit, the clinic can't bill for a mental health visit the same day. 

Ohio mental health organizations have a different set of technical problems. Years ago, the state obtained a federal waiver that carved out mental health from mainstream Medicaid. This made Ohio mental health and addiction services operate on a pre-allocated cost-reimbursement basis, not fee-for-service. Every dollar within an agency budget is tagged for service delivery based on service capacity estimates. The main management dynamic is utilization of the Medicaid budget allocation. Unspent dollars are reclaimed through an audit process, so there is no margin left over for success or experimentation. Because every dollar within an agency is already allocated, every new service requires new funding.

This provider funding dynamic prizes stability, not innovation. Competition is suppressed. Ohio Medicaid mental health contracts are no-bid contracts. In many communities there’s an undercurrent of cronyism. Provider executives get cozy with local politicians and mental health board members to make sure their agencies stay in the game. Agencies that provide a service at lower cost don’t win, and new providers are frozen out.

Adding primary care to mental health agencies also requires service efficiencies the population served makes difficult to sustain. Ohio Medicaid primary care is organized around fee-for-service reimbursement based on procedural billing codes. The codes provide about enough money for each encounter if the staff ratios are figured correctly, but the medical team must keep to a fast schedule, and every patient must have Medicaid or another insurance coverage. Unfortunately, people with mental illness usually take more time to serve. This makes it impossible to maintain the brisk pace that generates enough revenue to sustain the primary care effort long-term.


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Link to news report:

http://www.lancastereaglegazette.com/article/20130823/NEWS01/308230020/Expansion-new-model-mental-health-care-sidelined-now

Aug 20, 2013

Another celebrity lost to suicide

I learned of another celebrity who committed suicide today, a young African American man whose show I have been watching. I always wonder if a friend or co-worker or relative had an opportunity to ask the kind of questions that might have interrupted what was happening.

There is, of course no blame for the family or friends. We humans can be terrible at confronting trouble. I just came across a list the author Mary Pipher compiled of things people do to avoid dealing with the trouble that lies right in front of our face.
The Ways Humans Defend Themselves From Too Much Reality

1. We deny reality entirely.
2. We accept some aspect of reality but deny other equally critical aspects.
3. We minimize or normalize.
4. We overemphasize our lack of power.
5. We deny our emotional investment in reality.
6. We compartmentalize.
7. We feign apathy.
8. We kill the messenger.

Perhaps this actor’s trouble was just Too Much Reality for friends and family. And besides, under the best of circumstances it’s seldom easy to see suicide risk factors piling up in another person’s life. Suicide signals and the right follow-up questions are not well known.

Imagine how hard it is for a person to admit that they need help. For one thing, the person in trouble is likely to be activating the same eight pathways to reality denial as everyone around them.

And then there is the stigma  factor. Many people find mental health concerns shameful. Churches don’t handle it well. The African American community does not handle it well.
And the celebrity community?

The path to recovery is tough for anyone, let alone a person in the public eye. We pursue and persecute celebrities with problems. I watch my share of televised trials and reality TV profiles of celebrities emerging from rehab. Even the best of these shows are fully capable of treating troubled people with scorn. I can imagine the apprehension building up for a person with tough symptoms, and can sympathize with the reluctance to seek help.

I believe we need more ordinary community support for people experiencing depression and other mental health concerns. People from every walk of life have successfully confronted these problems. We do see some celebrities emerging to tell their stories. I have particular admiration for Demi Lovato and Lady Gaga, who both seem eager to be good examples for their fans and for the public at large.

But celebrity examples go only so far. Depression and disappointment are routine in our world.  We need more ordinary people to step up and reveal how they have handled their own difficulties. We don't need some sort of pageant of people with labels on their sweatshirts. We need people who are willing to hang out and say "This is what worked for me."

We also need to see more sympathy and less scorn from those who host shows highlighting celebrities with problems. There’s plenty of legitimate news value in showing How People Confront Too Much Reality and Manage to Pull Through. 

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By the way, here are four questions anyone can use to check in on a person and see if they are okay. If the questions sound awkward, rephrase them so they work for you.

1. What have you accomplished since the last time we met?
2. What are you facing?
3. Who are your allies?
4. What is your plan?

If,  after hearing their answers to these questions, you feel a gut-level worry, follow up with the following four questions – the ones most likely to uncover a suicide plan. Ask these questions directly.

1. In the past few weeks, have you felt that you or your family would be better off if you were dead?
2. In the past few weeks, have you wished you were dead?
3. In the past week, have you been having thoughts about killing yourself?
4. Have you ever tried to kill yourself?

If there is a Yes answer to any of these last four questions, don't leave the person alone. Call 911 or the person's doctor, or the national suicide hotline  1-800-273-8255.

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Sources

Mary Pipher (2013). The Green Boar: Reviving Ourselves in Our Capsized Culture.
Screening for teen suicide: The four questions to ask at risk youth. (n.d.). Retrieved August 20, 2013, from http://www.slate.com/blogs/xx_factor/2013/01/11/screening_for_teen_suicide_the_four_questions_to_ask_at_risk_youth.html

Aug 13, 2013

Our Grand Inquisitor says you can’t have treatment

Are states using targeted auditing to disrupt mental health services?

New Mexico used a recent audit to completely de-fund 15 mental health providers serving the bulk of the state’s publicly funded mental health care. Some 30,000 individuals have had their care interrupted. A number of for-profit and nonprofit providers are closing because they cannot maintain operations while fighting the proposed findings.

Although the state’s actions are authorized by law, they were not mandatory.

There’s no public access to the allegations within the audits. The audit findings are secret.

Similar events are playing out in North Carolina. According to newspaper reports, a 2012 Public Consulting Group audit that cost North Carolina $3.2 million found that North Carolina had overpaid behavioral health providers by $38.5 million, but the state found that less than 10% of the amount in question could be recovered.

Some coverage of this trend:
Administration at odds with state auditor over mental health fraud claims http://www.kob.com/article/stories/s3106244.shtml

Fraud probe update: CMS defends New Mexico's defunding amid questions about audit findings http://www.behavioral.net/article/fraud-probe-update-cms-defends-new-mexicos-defunding-amid-questions-about-audit-findings

NC Medicaid: Are New Mexico and NC Medicaid Providers Fraternal Twins? At Least, When It Comes to PCG! http://medicaidlawnc.wordpress.com/2013/07/18/nc-medicaid-are-new-mexico-and-nc-medicaid-providers-fraternal-twins-at-least-when-it-comes-to-pcg/

Even New Mexico Identifies PCG Audits as “Unreliable!” http://medicaidlawnc.wordpress.com/2013/07/15/even-new-mexico-identifies-pcg-audits-as-unreliable/

Big names in health care audit released http://www.abqjournal.com/214653/news/big-names-in-health-care-audit-released.html

Aug 3, 2013

Sorry, Brian Williams, “disgusting horrific criminal” didn’t make the DSM-5

If every grieving widow has a place in the DSM-5, why not Ariel Castro?

I saw some of Castro’s remarks at his sentencing. He seemed completely disconnected from the standard world. His behavior was out of bounds, abnormal, inexcusable and, to use a word favored by some within mental health advocacy community, he appears to have anosognosia of the criminal type. If madness has a spectrum, Castro has a place within it.

I’m glad to see some awkwardness around labeling Castro. It gives us an opportunity to consider the negative effects of labeling anyone as anything.

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The picture below is by Malaika Puffer, from her blog "Sort of just a person"

Even well-intentioned diagnostic labeling can hurt.

Aug 1, 2013

Is it Kendra’s Law, or better care, that helps people get better?

I recognize there is a place within our society for very limited, highly regulated use of mandated mental health treatment. On the other hand, I have difficulty supporting the rhetoric of involuntary treatment advocacy. Too often, what I hear or read combines a wishful longing for a quick fix with a desire to control “those people.”

The emotional content around involuntary treatment is downright raw. Advocates speak eloquently about tragedies that occur when systems fail to act. But if humanity’s history of abuse of people with mental illness isn’t reason enough for caution, there is no shortage of counter-testimonials about how forced treatment can be horrific, whether it happens within or outside of a hospital.

Fortunately, with sympathy and support within our families and throughout our communities, it's possible to create a mental health environment that virtually eliminates the need to choose between tragedy or torture. Most people come to terms with the mental health situation they are facing, learn what works for them, and do okay, especially when they commit to a recovery process, get the right treatment and have the support of friends and family. Our communities do need complete multilevel treatment and support systems that deliver the right sort of care when needed. If there is too much risk or a person is unsafe, there should be a means of supporting safety, but that can happen at home as well as in institutions. Only a tiny proportion of the population with mental health concerns ever reaches the point where involuntary care becomes an appropriate option. When appropriate, the process around involuntary treatment should be prompt, responsive, flexible, respectful and humane. People involved should still have opportunities to make choices as the process plays out.

I did read with interest last week’s New York Times story about Kendra’s Law, the involuntary outpatient treatment statute in New York. Is the law as effective as the article stated? Today I received a copy of a letter from the New York Association of Psychiatric Rehabilitation Services, commenting on flaws in the research. Here’s the letter I received.
NYAPRS Note: Following is a larger version of a letter submitted to the New York Times following its publishing an article last Tuesday about a new study that suggested that Kendra’s Law mandated mental health treatment order were directly responsible for improved outcomes and reduced costs. While we believe the researchers have once again presented a flawed study that fails to scientifically prove their point, the Times piece has now spread across the country.

Kendra’s Law Study is Bad Science, Poor Example for States

Re: “Program Compelling Outpatient Treatment for Mental Illness Is Working, Study Says” July 30, 2013  http://www.nytimes.com/2013/07/30/us/program-compelling-outpatient-treatment-for-mental-illness-is-working-study-says.html?_r=0

The new study that claims that Kendra's Law mental health treatment orders are responsible for improved outcomes and reduced costs makes unproven and irresponsible claims that have unfortunately been blessed by the Times.

There’s plenty of research to show that people who get more and better services do better. But these researchers continue to produce claims, now and in 2009, that mandated treatment orders by themselves play a key role in improving outcomes, without scientific head to head proof.

In comparing treatment given to those with and without court orders, the study fails to ensure that both groups got the same level of improved care, instead comparing apples to oranges.

For example, Kendra’s Law patients got priority access to a significantly higher level of service than those in the voluntary group.

Further, the sample size and the details provided for the group receiving improved voluntary care is scant, resembling an afterthought.

In contrast, a 1999 Bellevue study that ensured that voluntary and mandated groups got the identical level of services found “no statistically significant differences” on “all major outcomes measures” and concluded that “the package of enhanced services” caused the improvements, not the court orders.

New York’s Medicaid Redesign plan to overhaul our entire and reward better results and decreased costs is a better example for other states to follow, one that is already showing impressive results in voluntarily engaging at risk individuals and providing strong follow up.
Harvey Rosenthal
Member, New York’s Medicaid Redesign Team
Executive Director, New York Association of Psychiatric Rehabilitation Services

Jul 22, 2013

Stand your social distance or I’ll shoot

It’s the subjective element of Stand Your Ground laws that makes them come out racist. Any self-defense case involves a tragedy – but when convictions turn on the killer’s subjective impression of who is threatening, the people who get killed are more likely to belong to racial minorities and other out-groups, including people with disabilities.

Human encounters are affected by social distance, a measure of relatedness, a bundle of concepts ranging from familiar, approved, trustworthy and safe, to strange, different, suspicious and unsafe. People are said to be closest to those they trust and know best, typically those who are most like them. Social distance can be seen today playing out in a benign fashion in restaurants, stadiums and other public spaces. More people gather in same-group clusters than in more diverse clusters, even when everyone in the larger setting abides peacefully and even shares interests, attitudes, educational background and motivation for gathering.

The notion of relative safety connected with one’s own family and tribe, and higher perceived risk when encountering strangers, is an artifact of human evolution built into DNA and human nature.

From our earliest moments, we construct mental models, learning who is safe, who to avoid, and how to obtain what we need. We develop and rely on patterns, lumping similar things (or similar types of people) together. Mental models are working theories of the world, approximations of what we have learned, that incorporate what we see and hear from others as well as what we experience ourselves. Mental models connected to social distance may be useful and accurate, or dead wrong. Fortunately, mental models are subject to revision as we get to know people, and as we  learn and navigate the world.

Social distance becomes embodied in social policies and plays out in individual actions. No one is immune to its effects. In American society we are expected to manage and adjust our mental models so raw prejudice doesn’t cloud our judgment or taint our actions. Each generation tends to do better at this. However, Stand Your Ground laws validate prejudice and social distance, giving everyone a license to kill.

Consider how social distance has affected people with disabilities. Human society has always included people who could not see, walk or hear, and people with limited mobility, intellect or other reduced functioning, yet the concept of disability as a phenomenon that might itself be studied or discussed arrived relatively recently to Western society, in the mid-19th century. People initially spoke of conditions that were “natural” or “normal” and contrasted these with what was considered “monstrous” or “defective.” As scientists cataloged the variations in people’s bodies and capacities, they made judgments about the value of the lives of the people they studied. In the 19th century, as the theory of evolution mixed with the era’s crude racial stereotypes, researchers began to describe both nonwhite races and disabled people as regressions or throwbacks. For example, the physician who first identified Down Syndrome called it Mongolism because he understood it as a biological reversion by Caucasians to the Mongol racial type. This mode of thought, called Social Darwinism, set the stage for the eugenics movement and the Nazi Holocaust, and also played a role in immigration laws that forbade entry both to members of ethnic groups thought to be prone to criminality or deformity and to people with mental or physical defects. The mission of state institutions for people with mental illness and developmental disabilities also changed. Promoted in the 1840s as moral reforms, by the early 20th century the institutions were more frequently described as a means of social control. They kept members of productive society safe and separated ordinary citizens from those now described as sub-normal. People receiving care in these institutions suffered a type of social death.

Even today, disability connects with stigma, an “attribute that is deeply discrediting” and that reduces the bearer “from a whole and usual person to a tainted, discounted one” in the words of sociologist Erving Goffman.  Stigma originates from a process that involves labeling, linking to negative stereotypes, separation of “us” from “them”, and status loss and discrimination that leads to unequal outcomes.

Ultimately, stigma leads to partial or complete disempowerment, and now, even increased risk of death. The rhetoric of the gun lobby is doubly disturbing to disability advocates. We see people encouraged both to fear people with mental illness and "stand their ground" against whoever is perceived as threatening.


Jul 8, 2013

Extraordinary Popular Delusions and Madness in America

One of my favorite books is Extraordinary Popular Delusions and the Madness of Crowds, written in 1841 by Charles Mackay. It’s about the herd behavior of humans: fads and crazes and financial market follies. It covers witch trials, alchemy, superstitions. The book also covers the 17th Century “tulip bubble,” when flowers were currency, more valuable than gold. The lesson in the book is that once the populace gets convinced of something that turns out to be plain wrong or completely irrational, bad things happen. People die at the stake. Awakening to the realization that your tulip bulb investment is as worthless as a sack of onions is no picnic either.

There are signs that the world of mental health is in the midst of this sort of wake-up. The ruthlessness and greed implicit in the pharmaceutical industry’s marketing strategies is undermining the credibility of medication efficacy claims. The authority of the mental health’s secondary prevention model (early detection and treatment) and tertiary prevention model (treatment forever) is being confronted by research that shows better long-term outcomes on a whole-population basis when people do not use as much medication. The DSM is even becoming untethered from neuroscience.

I think the most significant development is that we now realize that people with mood problems, delusions and hallucinations deserve to be heard when they assert that what they experience has meaning. It means that writing people off is abusive and unethical. Someone with a mental health problem is not an irrational sub-human, but a valued person, no matter what he may be experiencing. We are also learning that social support is powerful on its own. It helps people with difficult symptoms stay on course.

As I see it, here is what we are waking up to.

Authority over madness is shifting to people with symptoms and away from experts and keepers. Despite symptoms a person may have, his life remains meaningful and valid. People can tolerate some level of chronic recurring symptoms and live safely, even flourish. People deserve opportunities to figure out what works and what is tolerable, and to choose an option that is presented accurately and supports their wishes. Nearly everyone wants normalcy anyway. Expertise is important, but should be advisory, not directive.  Mental illness, practically speaking, is not that complicated. Ordinary people, friends and relatives and neighbors, are perfectly capable of supporting the people they care for. They are already doing it, in every nation and every culture on earth.

There are certainly some tough cases and more difficult situations, but even these require individualized approaches. We say we do that now, but if we have been applying bad theory, it’s time to face up to that, and reckon with society’s folly.

Jul 4, 2013

Building a life despite tough symptoms

Barbara Altman’s memoir of a life affected by mental illness, set in the latter half of the twentieth century in the American Midwest, tells about what many people experience. Trauma is connected with substance abuse and is embedded in family life. Accomplishments also play out in intimate settings: homes, schools, churches and workplaces. Ms. Altman’s book tells the story of a someone who faced challenging mental health issues but still discovered meaning and success, and a life of grace, service and dignity.

Ms. Altman writes about her life from childhood to the middle of her sixth decade. She tells of a difficult home life centered around an alcoholic father. She experienced her father’s harsh temper, and possibly worse. At age 15, Ms. Altman became aware of vague nonspecific memories of sexual trauma when her father admitted to having sexual thoughts about young children.

As Ms. Altman worked through anxiety, psychosis, eating disorders and depression, she discovered her talent for music, and built a career in music education and music therapy. She writes about finding meaning and a place in the world through the support of other people and the consolation of her Christian faith. Overcoming anxiety was a matter of exposure in small increments. She writes about facing challenges deliberately, building up courage bit by bit, at a pace she could tolerate. It took a year for her to learn to swim a complete lap in an indoor pool, but she did it.

I like this book. It describes experiences common to many, recounts personal growth and service to others, and talks about what helps.

Recovering from Depression, Anxiety and Depression: My Journey through Mental Illness, by Barbara Altman is available through Amazon. Learn more about Barbara Altman at .

http://depressiontorecovery.com

May 27, 2013

The Health Foundation of Greater Cincinnati considers its legacy

I have an engraved paperweight from the Health Foundation of Greater Cincinnati, a small token for connecting Catholic Social Services with this philanthropy. It commemorates a puny little grant of $6000, one of the first times our local bishop let the agency accept money with strings attached.

My little prize is dated 1999, the first year of the Foundation’s Substance Use Disorder and Severe Mental Illness in the Criminal Justice Initiative.  From 1999 through 2008, this $12 million initiative funded ACT teams, jail diversion initiatives, mental health courts, crisis intervention teams and other efforts targeting the intersection of criminal justice and behavioral health disorders. The report that kicked off the project is still available online, and now, five years after the 2008 economic collapse put an end to the initiative, the Foundation has published a document saying what it learned.

This report is an interesting read for me, because I witnessed many of these programs as they rolled out across our region. What the Foundation says it has learned often differs from what I have observed about the various projects. The document reflects the point of view of a powerful institution manned by smart, dedicated, well-meaning professional do-gooders. My perspective is more closely aligned with small agencies, family members and service users.

The report starts by identifying why the intersection of behavioral health and criminal justice is important.
[P]eople with behavioral health issues are overrepresented in the juvenile and adult criminal justice systems. And in many cases, individuals’ behavioral health conditions directly influence their participation in crime. Unfortunately, the criminal justice system is ill-equipped to address the needs of these people effectively. Behavioral health services provided in prisons and jails are limited, and many people would be better and more effectively served by behavioral health diversion and reentry programs in the community.
The Health Foundation funded 99 separate projects to address this situation in a 20-county area including and surrounding Greater Cincinnati, a service area that includes urban, rural and suburban communities in Ohio, Kentucky and Indiana, extending even to a small part of Appalachia. The projects mostly included an extended planning process as a step one grant, and implementation as a step two grant.

The planning process was designed to make sure projects were thought through and sustainable. So-called “relevant stakeholders” were brought to projects at the planning grant stage. Unfortunately, the term “stakeholder” usually meant people with political, economic, or organizational clout – not the “client population.” The Foundation seldom promoted competing methodologies that might have suggested clients had a right to “vote with their feet.”

Relationship-building was a key part of the Foundation’s initiative. The Foundation never simply wrote a check. Its staffers stuck with projects, while grantees attended periodic meetings, submitted data, and generated reports.

From my perspective, the most important outcome of the initiative was the way that this relationship-building forced grantees to collaborate across system boundaries. After years of multi-system collaboration, local do-gooders had a chance to see whether organizational silos made sense. As the report notes:
While grantees did not often cite specific examples of changed policies and practices, the funding appears to have led to new and/or strengthened modes of contact between behavioral health and criminal justice system stakeholders.
In other words, the Foundation helped create examples of meta-systems or aggregated systems that replaced silos, the formalistic single-track systems we are usually stuck with. This is the ultimate take-away for me.

These days, when I see a silo, I see deliberate policy choices, funding choices, and mistakes of history playing out in ways that harm people or keep them from making progress. We choose to perpetuate these silos even thirty, forty, fifty years after deinstitutionalization.

Does anyone still believe that single-purpose systems make sense?

A police force stuck in the cops-and-robbers mindset is merely ignorant, not as safe as it should be.

A jail that ignores the treatment needs of prisoners is grossly deficient.

Substance abuse treatment that ignores depression or trauma is manifestly sub-par.

Shouldn’t every court or probation agency have access to relevant mental health expertise?

May 16, 2013

Recovery and re-entry

In many communities, nearly every child has a parent or close relative who has been incarcerated. How can we lessen the impact of this trauma?

There’s no easy way forward. In some institutions it’s almost impossible for security reasons to send a child’s letters, pictures, and art to an incarcerated parent.

And once a parent returns home, new obstacles to rebuilding family relationships emerge.
  • Can childcare centers use parents with criminal records as staff or program volunteers?
  • In your state, can parents help coach baseball if they have a felony conviction?
  • Can you have a school picnic and invite known felons?
  • What is the minimum level of screening and precaution we must support?
  • What safety policies make sense when family reunification is the whole point?
Meanwhile, the returning parent must deal with the mental health effects of incarceration.
  • Thinking has been affected. People lose “executive function,” the ability to make plans or take action when there are no clear guidelines. The only way to get this back is to practice rational thinking: Generate options, then choose. Develop rules to help guide choices. It helps to have someone to help reality-check.
  • Feelings are affected. Shame, fear, depression, anger, trauma. These must be handled and processed, not repressed. People need a support system that helps them regain capacity to be vulnerable and trusting.
  • Relationships are critically important, but need to be rebuilt. This is unavoidable tough work.
  • Information is missing. Time and technology has moved forward while the person has been away.
  • The person must leave the unsafe community, and commit to living in a positive safe world. Prisons and jails are communities. People can miss them, and grieve over relationships and former lives. But they are neither safe nor positive.
What safe, positive places are available and welcoming in your community? What strategies can we recommend for people who return from prison having paid their debt to society?

As a practical matter, I think that the strategy for recovery from prison is exactly the same as the strategy for recovery from any other mental health problem.  People must learn about what they are facing, recruit allies, find resources, plan short term and long term, and follow their plan.

As they develop plans, people should answer four questions:
  • What helps the person make the most of their talents and capacities? 
  • What makes the person less vulnerable? 
  • What helps build capacity to handle stress? 
  • What must the person do to address the risk of something going wrong?

Apr 23, 2013

Preventing the next bomb plot

Detecting suicidal thinking can stop bomb plots like Boston’s. Like every one of our recent mass killings, this was suicide with a murderous twist. 

The minimum requirements for suicide are suicidal intent and access to a means of suicide.

If the means of suicide is a weapon, there is a possibility of harming another in the course of the suicide.

If there is also an intent to murder someone, or make a statement, or respond to another person’s influence, then someone or something may likely get attacked as the suicide plays out.

If a group is promoting suicide terrorism, or if there is social shame attached to suicide but cultural approval of suicide martyrdom, then the suicide attack can become a terror strike.

National security expert Adam Lenkford writes:
Homicidal intent often increases the severity of attacks…truly homicidal suicide terrorists are motivated to maximize enemy casualties.

A sponsoring terrorist organization may increase suicidal and homicidal intent, provide access to weapons and enemy targets, and boost social approval of suicide terrorism through its use of propaganda…
Social stigmas surrounding conventional suicide and social approval of suicide terrorism often work together. When a community strongly condemns conventional suicide as a certain path to hell, it virtually disappears as a potential escape route. And when a significant percentage of people believe that suicide terrorism is justified, a new door opens for desperate individuals.  
I believe that ordinary Americans have the best opportunity to detect suicidal thinking among our friends and family members. Saving them saves us.

In 2009, at age 22, Tamerlan Tsarnaev told his uncle he was not concerned about work or studies because God had a plan for him. He was flunking out of accounting school. His boxing career was close to over. He identified himself as a very devout Muslim. In 2013, after his trip abroad, he was effectively silenced within the community of his Boston area mosque for the way he expressed his disruptive radicalism.
When a preacher at the same mosque says slain civil rights leader Martin Luther King Jr. was a great person, Tsarnaev stands up, shouts and calls him a "non-believer," the Islamic Society of Boston said. Tsarnaev accuses the preacher of "contaminating people's mind" and calls him a hypocrite. People in the congregation shout back at Tsarnaev, telling him to "leave now." Leaders of the mosque later tell him he will no longer be welcome if he continues to interrupt sermons. At future prayers, he is quiet.
Tsarnaev had become a shunned, alienated, isolated, radicalized has-been boxer, a “loser” as described by his uncle. And an outlaw. Look at the social boundaries he is willing to violate as he challenges the authority of the preacher at his mosque, demonizing, of all people, Martin Luther King Jr.

Who was the person best placed to take this young man aside, befriend him, and find out what he was facing, what he was contemplating?

What everyone can do to prevent attack-suicides

In most of these situations the only possible intervention is below the level of our formal systems. 

Prevention is the responsibility of family, friends, co-workers and neighbors. Even if reported, emergency responders can't act forcefully if the risk is not immediate and serious. Sometimes the police or a crisis team might be able to make a safety check visit to a person's home.

The best thing anyone can do is to support their friend. This helps prevent feeling isolated and helps build resiliency. You are unlikely to ever know if the steps you take to support a friend have prevented a suicide or interrupted a developing course of violence. You want the person to become more resilient and successful, so that the outcome is positive.

Try to have a brief chat in a public place but out of earshot of other people. Ask the following questions one at a time, in order. Practice the questions out loud. Yes, this is awkward. You can use your own words, but follow the pattern. Listen to the person's answer. People benefit simply by knowing they have been heard.

-- What have you accomplished since the last time we talked?
-- What are you facing?
-- Who are your allies?
-- What is your plan?

As you listen, be on the lookout for suicide risk factors. These include prior violence, substance abuse, a failure of addiction or mental health treatment, difficulty verbally expressing feelings, stress, extreme discouragement or recent shameful loss, no ability to make effective plans, trouble relating to other people's feelings, the onset of schizophrenia or another major mental illness, and lack of sources of support.

If you start to feel worried, offer to connect your friend to a more formal source of help. You may have the single most important opportunity to help your friend. If you detect tunnel vision and a sense of diminishing options, or the person talks about suicide, or expresses a lack of hope, ask the person directly about thoughts of suicide. Suicide is much more likely than violence directed against other people. Ask directly using these words: "Are you thinking about killing yourself?"

If you sense that the person is becoming suicidal, stay with the person. Try to persuade them to seek help from their doctor or visit an emergency room. Offer to help them get in contact with a crisis hotline by calling 1-800-273-8255 or dialing 911.

Effective suicide prevention training is available online through the QPR Institute at www.qprinstitute.com/ and from many community groups.


Previous posts

Teach suicide prevention where people buy guns. http://redesigningmentalillness.blogspot.com/2013/02/teach-suicide-prevention-where-people.html

Dear Vice-President Biden, Here’s What It Takes to Fix Mental Health. http://redesigningmentalillness.blogspot.com/2012/12/dear-vice-president-biden-heres-what-it.html

Mass murder is the new flavor of American suicide. http://redesigningmentalillness.blogspot.com/2012/12/mass-murder-is-new-flavor-of-american.html
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Sources

Lenkford, A. (2013). The Myth of Martyrdom: What really drives suicide bombers, rampage shooters, and other self-destructive killers. NY: Palgrave Macmillan.

CNN. (2013). Timeline: A look at Tamerlan Tsarnaev’s past. Downloaded April 23, 2013 from http://www.cnn.com/2013/04/21/us/tamerlan-tsarnaev-timeline/index.html

Apr 18, 2013

Is your mental health expert smarter than a second year college student?

If we took what we know about how mental illness plays out in the world and let some second-year college students work on fixing it, would we end up with something better than what people experience today?

Today’s experience of mental illness, such as it is, developed through accretion. It is a mishmash of good and bad intentions, a clump of attitudes and practices, a basket of  traditions, economic and political factors, plus choices made since time immemorial. We have “cures” that include home remedies, scripts for talking with people, and manufactured pills and potions. We have “lifestyles” that include disempowerment, isolation, poverty, broken families, unemployment, poor health, even death.

What if we told our students to start from scratch, rejigger the whole thing. Redesign it,  using standard design techniques, a reasonable budget and some consensus-based mental health practices. What might this design team come up with?

Here are some of the principles the design team would use.

Unification.  The team would pull elements of the proposed solution from everywhere, not just from one discipline, but many. Whatever the origin, the product would work cohesively, as a unit.

Diversity. Designers are known to be self-referential. Men design for men, women for women, everyone for their own home culture. A diverse team delivers results appropriate for more people.

Accessibility. Users would know how the product functioned. The technology would be evident to the user.

Safety. The designer would understand the human factors involved, making sure the technology is safe for the user.

Simplification. Reducing the number of paths, parts and processes.

Problem solving. Addressing the user’s concerns, delivering something that makes a person’s life better.

Waste reduction. Reduce the burden of the product on the environment and on society at large.

Responsiveness. Deliver what the user demands. Create what the consumer wants, respecting the consumer’s motivations, even when the designer does not agree.

Appropriateness. Don't confuse commercial products with consumer products. Commercial products are money and process-driven, whereas consumer products must address the human needs of product users.

Deep research. Designers must immerse themselves in the user’s world to ensure they are reflecting the user’s desires, not their own.

* * *
Yesterday I watched as these principles played out at the school where I teach, Cincinnati State Technical and Community College. Six industrial design technology students presented their capstone design projects, products ranging from bike racks to assistive devices to squeeze bottles to trash can bags. A group of experienced designers from Procter and Gamble, GE Aircraft and other local companies coached and mentored the students. Over the course of the four-hour event, the advisors highlighted additional opportunities to learn from users. What does the client want? How do you know what the client wants? Was the client satisfied with what you delivered? When something wasn’t safe, how might you fix it?  Would the fix be satisfactory to the client?

Needless to say, this was eye-opening for me. Mental health services are consumer products, after all. Why does no one listen to service users, people the system calls consumers?

This classroom of second-year undergraduate-level design technology students were figuring out how to solve any problem by listening to people, applying some basic prototyping and fabrication, and checking to see if the user’s needs were met.

How many of today's mental health experts can honestly say they do that?