Big Brother Is Watching: Children and Older Adults, Part I

Jack Carney, DSW
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[This is the first part of a two-part article about the system of surveillance and social control that has been established in this country with psychiatric involuntary commitment laws at its center, and about a possible campaign to end Kendra’s Law or Assisted Outpatient Treatment in New York State. Part II will be posted shortly.

                           * * * * *

 Just yesterday morning they let me know you were gone

Susanne the plans they made put an end to you …

“Fire and Rain”
James Taylor, 1970

If involuntary outpatient commitment, popularly known as Kendra’s Law, is to be ended in New York when it sunsets or expires in 2015, the reductive stereotypes used to characterize the individuals most likely to be affected, viz., those persons labeled with serious mental illnesses and caught up in the public mental health system, must be discredited and discarded. Rather than being seen as disordered and dangerous, as marginal and incapable of contributing to their own and to the larger social good, they must begin to be viewed by the larger society as ordinary yet extraordinarily resilient individuals who have been beset by an epidemic of death and disease caused by the medications presumed to save their lives and maintain them in their home communities. A symbol is needed, akin to the AIDS quilt, to graphically depict the thousands of individuals who have died or whose health has been impaired since the introduction of the new psychoactive medications over the course of the past twenty years. In a recent article in The New Yorker, “Love on the March,” Alex Ross writes of “the persuasive power … of the AIDS quilt, first exhibited on the Washington Mall in 1987” before being taken on a national tour. “… In 1988, fifty-seven per cent of the American public thought that gay sex should be illegal; in a single year, the number dropped to thirty-six percent.”

What’s the symbol to be, then, and what else needs to be done and how and who’s to do it? Let me begin by offering a cautionary tale.

Fifty years ago, between the ages of 18 to 24, I suffered three serious bouts of depression. I mention this not because these were out of the ordinary experiences but because, particulars specific to me aside, they were so commonplace. How many young men and women that age do you know who haven’t been depressed at some point in their young lives? The first occurred at the unhappy end of a first love affair. I was eighteen, between my freshman and sophomore years in college, and was left bereft and forlorn for several months. The second occurred three years later, after I had graduated from college, joined the Peace Corps and went off to Cali, Colombia. It was early December and I found myself alone in the house I had just rented. Letters to my family had gone unanswered and I felt abandoned. I was lying in my bed contemplating suicide when a rat crawled across the roof beam from which I was thinking of hanging myself. My sense of irony took over and I picked myself up out of bed, having decided that killing myself was not a good idea.

The third took place during my first Christmas week back in the U.S. It was the tail end of 1967, just two weeks shy of my 24th birthday, and I had returned to the States in June. My first wife, our infant son and I – yes, I had started my own family – were living in a small furnished apartment in Santa Monica across from the McDonnell-Douglas aircraft plant. I had just enrolled in the U.C.L.A. School of Social Work and had planned to work in the Santa Monica Post Office during Christmas break, as I often had in college; but I just couldn’t get out of bed that entire week. Call it my circadian rhythm or the imprinting of that experience on my brain and body, but for the next twenty-five or so years, Christmas remained an emotional low point for me, a bittersweet, unhappy time. That seminal Christmas of 1967 could very well have been the lowest point in my life.

I worked my way through every one of the three episodes outlined above and came out the better for it. The first time around, I wound up a college graduate and a certified New Yorker looking for adventure. In Colombia, I re-upped for an extra year, my third in the Peace Corps, and embarked on my life’s work, helping poor people of color. When I got back on my feet in L.A., I went back to school and forged a professional identity which defines me to this day — as an advocate, organizer and provocateur. I managed to accomplish what I did in much the same way that the great majority of adolescents and young men and women continue to do so, as per current NIMH data, by not seeking professional help. Actually, I didn’t ask anyone for help; I didn’t believe I needed any. After all, I was simply growing up, as painful as that process might have been. Perhaps if I had felt less vulnerable, less alone, had someone I could trust … It was relatively easy to keep my distress under wraps since I was part of a family that generally ignored me from the time I hit adolescence. My young male friends and classmates and my fellow Peace Corps volunteers, even my young wife, were wrapped up in themselves and their own troubles. And, in any event, Brooklyn working class culture actively dissuades young men from sharing their emotional travails with one another … or with a psychiatrist or a psychotherapist. Fortunately, I never experienced psychotic symptoms, kept away from street drugs and alcohol and found my life’s work when I was still a very young man. I never blew my cover and I find myself, many years later, reassured by Jung’s dictum, “… Only the wounded physician heals.”

I would like to tell young folks feeling depressed or crazy, “Keep it to yourself!” Don’t tell anyone unless you have someone you trust not to summarily dump you into the public mental health system or its private iteration. With any luck, you’ll have someone in your life in whom you can confide. Even then, try not to draw too much attention to yourself. All of which might be near impossible tasks in today’s world. Things have changed since I was a kid. It seems that all sorts of authority figures, particularly in the public schools, the public mental health system, the criminal justice system and even in nursing homes, where individuals are nearing the end of their lives, are on the lookout for individuals who are troubling and/or appear troubled. When such individuals are found out, they’re invariably designated as suffering from a mental illness or disorder, medicated and incarcerated in or confined to a regimen of treatment that presumes to define who they are, restricts their pathways to personal development and denies them the freedom to make their own choices, their own mistakes. Parents and family members actively collude or are whipsawed into doing so. An indefatigable system of surveillance and social control bordering on eugenics has been put in place and continues to expand its reach. I’ll explain below how involuntary commitment laws, in-patient and out-patient, serve as the keystone of this construct.

The scrutiny begins as soon as kids walk through the schoolroom door: nursery school, pre-K, private or public or charter school, it appears to make little difference. But the real battleground is the public schools, propelled by No Child Left Behind and, more recently, by Obama’s Race to the Top, and by a series of “Prevention and Early Intervention” programs housed in university medical centers and funded as early as twenty five years ago by the Robert Wood Johnson foundation. More recently, the Federal government has involved itself via SAMHSA’s Prevention and Early Intervention grant program, initiated in 2001. These programs’ purported aim is “to expand children’s mental health promotion and early intervention services” and so allow children to achieve greater scholastic success. But given the number of right-wing politicians pushing anti-union agendas – just witness Wisconsin – I have to assume we’re witnessing a political battle for control of the public schools, with the kids and their parents, as Dylan would have it, “pawn in their game.”

As I’ve written in earlier postings, this battle has been brewing since 1954 when the U.S. Supreme Court in Brown v. Board of Education declared the legal underpinnings of school segregation unconstitutional. White flight began immediately in the South and has continued to the present, leaving public schools essentially re-segregated and attended by poor and troubled kids. “No Child Left Behind” was a Texas state initiative which purported to address and correct the problems associated with “failing” schools and their students; but since the remedy offered centered around testing and only scant new resources were made available, it soon became evident that the kids themselves, their parents and their uncaring and incompetent teachers were being held responsible. When “No Child Left Behind” became national educational policy under Bush fils, the blaming and scapegoating of kids and teachers and of the public schools themselves went nationwide. Charter schools, many for-profit entrepreneurial endeavors, began to be extolled as a singular alternative for those kids who were bright and motivated to achieve, as well as for their parents, who aspired for success for their kids but did not have the financial wherewithal to enroll them in elite private schools.

Diane Ravitch has challenged all the foregoing assertions. In her latest book, The Death and Life of the Great American School System (2010), she contends that the public schools are not failing despite the many attempts of self-proclaimed reformers to undermine them and offers case studies of five urban school systems – in New York, Philadelphia, Chicago, Denver and San Diego – where many if not most students appear to be thriving. In a recent New Yorker article by David Denby, “Public Defender,” she asserts that the reformers consistently ignore “the largest problem facing educators: the cyclical poverty that afflicts more than a fifth of the nation’s children.” She also views teachers and their unions, the American Federation of Teachers and its local affiliates, not as primary culprits but rather as essential advocates for preserving the public school system; and she sees charter schools as a cynical and premature attempt to salvage from the anticipated wreckage of public schools those kids who are smart and motivated enough to do well anywhere. Left behind will be the troubling and the troubled, to be taught by demoralized and abandoned teachers. Which is precisely where the Early Intervention mental health programs would appear to fit in.

Neo-conservatives or Republicans (take your pick) appear to have a talent for proclaiming the opposite of what they mean. Who could ever forget “Operation Iraqi Freedom (italics mine)? In 2002, Bush fils established the President’s New Freedom Commission on Mental Health, whose 2003 report to him specified its mission, principal goals and a series of recommendations presented in abridged form below:
• “… implementation of national strategies for suicide prevention and … to reduce the stigma of seeking care”; and,
• “ … strengthen early childhood mental health interventions … that include screening, assessment, training, financing of services;” and
• “… building on “No Child Left Behind” Act …”

Looking back, many of us can now say what we then thought, that Bush’s Commission and its 2003 report were smoke and mirrors, that its apparent public benevolence camouflaged the harsh consequences in store for those affected by it.

In a report issued in December, 2007, by the Center for Health and Health Care in Schools of George Washington University, four and a half million children aged three through seventeen nationwide were identified as having ADHD; a similar number were determined to have a learning disability; half the kids diagnosed with ADHD were also diagnosed with oppositional defiant disorder; an increasing number of children and adolescents were found to have bipolar disorder; and close to five million kids were believed to be depressed. And how were all these kids with all these disorders being helped or treated? Almost exclusively via prescription of psychoactive medications.

Again as per the George Washington report, nearly ten million school-age children nationwide in 2006 took prescribed medications for at least three consecutive months. Stimulants such as Ritalin were being prescribed for those diagnosed with ADHD; and SSRI’s were being used to treat children and adolescents with presumed major depressive disorders despite outcomes showing no significant difference in efficacy between SSRI and placebo study subjects in virtually all controlled studies.

The Treatment for Adolescents with Depression Study (TADS), funded by NIMH, sought to reverse that trend, publishing outcomes in 2004 extolling the effectiveness of fluoxetine (Prozac), the one SSRI approved by the FDA for pediatric use, in ameliorating study subjects’ depression and suicidality; which results were disputed at the time by The British Medical Journal and The Lancet. More recently, i.e., earlier this year, they were refuted by David Healy and Bob Whitaker, who had reviewed previously unpublished data highlighting the toxic effects of flouxetine, its likelihood of promoting suicidality when compared to study subjects receiving placebo, and its general ineffectiveness in remediating symptoms of depression in children and adolescents.

Nonetheless, the beat went on, then and now. The George Washington folks reported that the FDA had approved SSRI’s for “treating [OCD], social phobia, separation anxiety disorder and generalized anxiety disorder in children 6-17 years of age.” They also reported that, in 2007, the FDA approved Risperdal “for the treatment of schizophrenia in adolescents ages 13-17, … for the short-term treatment of manic or mixed episodes of bi-polar I disorder in children and adolescents ages 10-17 … [and] in 2006 for treatment of irritability associated with autistic disorder in children ages 5-16.” Five years later, waiting in the wings, was the DSM5 Task Force with two new diagnoses for kids — Attenuated Psychosis Syndrome and Disruptive Mood Dysregulation Disorder (DMDDO). Their thinking, I suppose, was “get ‘em early, get ‘em for life.”

The former was conceptualized as a proactive diagnosis whose aim was to identify and treat prophylactically those children at risk for psychosis; fortunately, field trials could not support its inclusion in the new DSM (let alone its very existence), so it was relegated to the DSM’s Appendix, a diagnosis-in-waiting for DSM’s next revision. The latter, Disruptive Mood Dysregulation Disorder, was included and will probably serve as the catch-basin for the kids who graduate from ADHD and Oppositional Defiant disorder. Each appears tailor-made for treatment with Risperdal and perhaps Depakote. One can only marvel at the lengths to which American psychiatry will go to create categories of illness that are quantifiable and that will satisfy its lust for scientific legitimacy.

On a salutary note, parent protests contributed to the closing of the TeenScreen National Center for Mental Health Checkups at Columbia University, effective November 15 of this year. Developed as a part of Columbia’s Division of Child and Adolescent Psychiatry in 1999, it was launched nationwide in 2003 to screen thousands of school children for suicidal risk and then recommend a course of treatment centered on counseling and medication. TeenScreen never approximated the goals it had advertised as its mission; and when its director and associate director were identified as shilling for various drug companies, public pressure in the form of parent protests shut it down. A significant yet small victory, given the many other early intervention programs, such as TeenHelp, Inc., that will continue to operate.

Psychiatry has also been a significant presence at the other end of the spectrum, among nursing home residents, since the establishment in 1987 of national standards for nursing homes. Indeed, a former president of the American Association for Geriatric Psychiatry once described nursing homes as “largely forgotten psychiatric hospitals, with 80% of residents, in 2005, estimated to have psychiatric disorders – Alzheimer’s disease, depression, anxiety and psychotic level disorders. As per the Center for Disease Control and Prevention, a rapid growth in the number of older Americans, i.e., those 65 and over, is expected to take place after 2010, when the first boomers hit 65. By 2030, the population of older Americans is expected to be twice as large as in 2000, growing from 35 to 70 million persons and representing about 20% of the total U.S. population. Interestingly, through 2006, the percentage of Americans aged 75 and older living in nursing homes declined to 7.4%. Even should that number remain constant, the greater number of persons in that age group should result in an expanded nursing home population. In 2010, Kaiser Permanente fixed the number of nursing home residents at 1.4 million; should that population mirror the growth in the number of seniors across the country, it, too, could well double in size over the next twenty years. Perhaps by then the many psychiatrists working in the homes will have stopped or reduced the number and dosages of psychoactive drugs they prescribe their residents.

In 2010, the Center for Medicare and Medicaid Services (CMS) reported the following:
• nationwide, 39.4% of nursing home residents who had cognitive impairments and behavior problems but no diagnosis of psychosis (italics mine) received antipsychotic drugs;
• a smaller pecentage of residents, 15.6%, who did not have cognitive impairments or behavior problems also received antipsychotic drugs.
In short, the proverbial chemical straitjacket was being provided for 55% of the 1.4 million nursing home residents in the U.S.

A report issued by the Center for Medicare Advocacy in 2011 declared that all antipsychotic drugs are viewed as extremely dangerous for older persons, particularly for those who have no apparent need for them. The report noted that, in 2005, the FDA issued “black box” warnings against prescribing atypical antipsychotics for patients with dementia, cautioning that these drugs increased dementia patients’ mortality. By June, 2008, the FDA had extended its warning to include all antipsychotics, advising providers that “antipsychotics are not indicated for the treatment of dementia-related psychosis. In early 2007, the associate director of the FDA, David Graham, testified before a Congressional committee that “15,000 elderly people in nursing homes [are] dying each year from the off-label use of anti-psychotic medications …” Finally, in 2010, The New York Times reported that annual revenues for all antipsychotic revenues total $14.6 billion, up from the $13 billion tallied by the drug companies in 2007, representing 5% of all drug expenditures in the U.S. That same year, 2010, as I noted above, nearly 800,000 nursing homes were still being prescribed anti-psychotic meds off-label. Why the disconnect?

As a nursing home administrator interviewed by Paula Span for a NY Times article published in February, 2011, pointed out, it’s easier and much less labor intensive to calm a disturbed nursing home resident with a pill than with a behavioral intervention. Nonetheless, that same administrator was participating in a non-drug demonstration project aptly titled “Awakenings “ that would eventually be implemented with great success in the 16 proprietary nursing homes in Minnesota owned by the Ecumen company. In the demo program conducted in its 60-bed, Two Harbors home, Ecumen added two full-time staff members to bolster its workforce and began to teach all staff – housekeepers, cooks, dining room servers, everyone — a variety of tools to calm and comfort its residents: exercise, recreational activities, music, massage, aroma therapy; and it taught its staff how to listen and respond to residents without insisting on details that folks with dementia can’t provide. In short, they created a therapeutic milieu with lots of hands-on caring. Lo and behold, all ten residents taking antipsychotics were able to stop and nearly half of all residents prescribed anti-depressants were able to do well without them. Heartened by the results, the “Awakenings” approach was initiated in Ecumen’s 15 other homes.

The simple lesson? Kindness and caring save money, time and lives, restore a sense of purpose to staff and dignity to the persons they are striving to help.
Nonetheless, Ecumen and its people remain an exception. The two cornerstones of the social control system we have examined, the schools and nursing homes, continue to demand from those who use their services their submission to and acceptance of their powerless roles in the system, exemplified by the psychoactive medications they find themselves obliged to take. Our task is to determine how to begin to change that. Accordingly, we now turn to the linchpin of this oppressive system, the inpatient and outpatient commitment laws that hold the system together and provide its rationale for existing.

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References:

Blood, J., “TeenScreen Directors Resign — Collusion with Pharma Cited,” July 10, 2012, http://deadlinelive.info/2012/07/10/teenscreen

Center for Health and Health Care in Schools, George Washington University, “Psychotropic Drugs and Children: a 2007 Update,” December, 2007, www.healthinschools.org

Center for Medicare Advocacy, Inc., “Reducing Antipsychotic Drug Use in Nursing Homes: Save Residents’ Lives, Save Medicare Billions of Dollars,” March 3, 2011, http://www.medicareadvocacy.org/2011/03/17/reducing

Denby, D., “Public Defender: Diane Ravitch Changes Tack,” The New Yorker, November 19, 2012

Dunne, C., Carl Jung: Wounded Healer of the Soul, Watkins Publishing, London, 2000, 2012

Dylan, Bob, “A Pawn In Their Game,” Warner Brothers, 1963

Early Detection and Intervention for the Prevention of Psychosis Program, “Frequently Asked Questions,” http://www.changemymind.org/about

Gever, John, “DSM5: What’s In, What’s Out,” May 10, 2012, http://www.medpagetoday.com/MeetingCoverage/APA

Kaiser State Health Facts, “Total Number of Residents in Certified Nursing Facilities, 2010,” http://www.statehealthfacts.org/

Medical News Today, “Fewer Elderly U.S. Residents Live in Nursing Homes, U.S. Census Reports,” October 1, 2007, http://www.mediaclnewstoday.com/

National Center for Mental Health Promotion and Youth Violence Prevention, “Promoting Children’s Mental Health: The SAMHSA/CMHS Prevention and Early Intervention Grant Program,” 2012, http://www.promoteprevent.org/publications/

National Institute of Mental Health, “Major Depressive Disorder in Children,” http://www.nimh.nih.gov/statistics/

National Institute of Mental Health, “Research Roundtable: Heterogeneity in Child and Adolescent Depression, February 18-19, 2008,” http://www.nimh.nih.gov/research

President’s New Freedom Commission on Mental Health (www.MentalHealthCommission.gov), “Final Report to the President,” 2003,
http://govinfo.library.unt.edu/mentalhealthcommission/index/htm

Ravitch, D., The Death and Life of the Great American School System, Basic Books, New York, 2010

Ricker, R., Nicolino, V., “The Over-Prescribing of Psychoactive Drugs to Children: A Scourge of Our Times,” Huffpost Healthy Living, September 1, 2010, http://www.huffingtonpost.com/

Ross, A., “Love on the March: Reflections on the Gay Community’s Political Progress – and Its Future,” The New Yorker, November 12, 2012

Schwarz, S.W., “Adolescent Mental Health in the United States,” National Center for Children in Poverty, Mailman School of Public Health, Columbia University, June, 2009, www.nccp.org

Society for Humanistic Psychology, “Open Letter to the DSM-5,” http:www.ipetitions.com/petition/dsm5/

Span, P., “Clearing the Fog in Nursing Homes,” The New York Times, February 15, 2011, http://newoldage.blogs.nytimes.com/2011/02/15/

TeenHelp.com, “Teen Depression Statistics,” 2012, http://www.teenhelp.com/teen

TeenScreen, “How Screening Can Support Teen Mental Health,” and “United  States Adolescent Mental Health Fact Sheet,” National Center for Mental Health Checkups, Columbia University, December 20, 2011, http://www.teenscreen.org/

Travis, E.H., “Psychotropic Drug Use in Nursing Homes,” Global Action on Aging, March, 2005, http://www.globalaging.org/health/us/

Whitaker, B., “The Real Suicide Data from the TADS Study Comes to Light,” Psychology Today & Mad in America, February 23, 2012, http://www.psychologytoday.com/blog/mad-in-america/201202/

 

 

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3 COMMENTS

  1. Jack,

    Once again, I read your words and feel compelled to thank you – quite sincerely – for your very thoughtful writing.

    Thank you, especially, for sharing those personal experiences, of your early adulthood.

    You explain of yourself: “between the ages of 18 to 24, I suffered three serious bouts of depression…”

    I find that tale, of yours, interesting — and quite instructive; for, with all your subsequent years of experience, in the ‘mental health care’ system, afterward, your ultimate advice to young people who maybe be, “feeling depressed or crazy,” is: “Keep it to yourself!” and “Don’t tell anyone unless you have someone you trust not to summarily dump you into the public mental health system or its private iteration. With any luck, you’ll have someone in your life in whom you can confide. Even then, try not to draw too much attention to yourself…”

    That whole paragraph, of yours is well-worth a second (and third reading), I feel.

    (Please excuse me as I copy and paste the end of it, here, to bring it much deserved further attention.)

    You write:

    “Things have changed since I was a kid. It seems that all sorts of authority figures, particularly in the public schools, the public mental health system, the criminal justice system and even in nursing homes, where individuals are nearing the end of their lives, are on the lookout for individuals who are troubling and/or appear troubled. When such individuals are found out, they’re invariably designated as suffering from a mental illness or disorder, medicated and incarcerated in or confined to a regimen of treatment that presumes to define who they are, restricts their pathways to personal development and denies them the freedom to make their own choices, their own mistakes. Parents and family members actively collude or are whipsawed into doing so. An indefatigable system of surveillance and social control bordering on eugenics has been put in place and continues to expand its reach.”

    All of that resonates with me — as much of what you describe there is, in fact, reminiscent of the sort of ‘mental health “care” system’ which I encountered (and which held me in its grip, for 3.5 years) roughly a quarter of a century ago.

    Now, as you are well aware, that system has only gotten worse — with its insidious reach into the public schools and its advancement of so-called “Assisted Outpatient Treatment.” (By the way: again, thank you for bringing attention to that ‘AOT’ issue.)

    I look forward to the publication of your memoir.

    (Note: your bio explains that it’s tentatively titled, “Good-bye to Mental Health: A Not So Fond Farewell”; I presume what you really mean is, “Good-bye to the so-called Mental Health Care System…”)

    More power to you…

    Sincerely,

    Jonah