Healing the Broken Mind

Transforming America's Failed Mental Health System

Timothy A. Kelly

• Publisher: NYU Press
• Year: 2009
• ISBN:
  9780814748275
• Topic: Psychology
• Subtopic: Mental Health in Psychology
• Index: Psychology

Few afflictions are as frightening or as heartbreaking as mental illness. It may be a topic that many would prefer to sweep under the rug, but it is a fact of life that we as a society can and must face. We have come a long way over the past few decades in our understanding of mental illness and its potential treatments. Yet, tragically, many across the country who struggle with serious mental illness are unable to find effective, quality medical treatment. As a federal commission on mental health concluded, the system of care is in shambles. But why? And how do we fix it?

Timothy A. Kelly, former Commissioner of Virginia's Department of Mental Health, Retardation, and Substance Abuse, brings his three decades of experience as mental health commissioner, psychology professor, and clinician to bear in confronting this crisis in America's mental health care system. In clear and accessible terms, he exposes the weaknesses in the current system, examining how and why one of the world's richest and most advanced countries has allowed its most vulnerable citizens to be victimized by the very system designed to help them.

Armed with the latest statistics, a lifetime of experience, and heartrending life stories, Kelly argues that the patchwork of care traditionally employed to treat mental illness is simply not up to the task, and that what we need is profound, fundamental, and system-wide change. He then goes on to provide an easy-to-follow road map for achieving lasting transformation, centered on five recommendations for creating a truly effective mental health system of care that enables patients to achieve a lasting recovery.

Mental illness is not going to just go away, but Kelly prescribes a comprehensive plan to make treatment accessible and effective so that those who suffer can rejoin their families and their communities. He shows how a transformed system of community-based care allows those with serious mental illness to finally be able to go home.

1
Men in Diapers

A System in Shambles

A nation’s greatness is measured by how it treats its weakest members.

Mahatma Gandhi

America’s mental health service delivery system is in shambles . . . [and] needs dramatic reform.

The President’s New Freedom Commission on Mental

Health, Interim Report to the President (2002)

MENTAL ILLNESS CAN be frightening both for those who experience it and for their family and friends, who may try in vain to somehow just make it all go away. It strikes young and old, rich and poor, Democrat and Republican alike. Some of our greatest leaders have experienced it, such as President Lincoln, who struggled with depression. Some of the most talented artists have experienced it, such as Mozart, who is likely to have had bipolar disorder. Some of our most brilliant scientists have experienced it, such as Dr. John Nash, the “Beautiful Mind” mathematician. Nobody is exempt, nobody is somehow “above” being able to become mentally ill. That may be scary, but it should not keep us from figuring out what to do about it.

Mental disorders are the leading cause of disability in the United States and Canada for ages fifteen to forty-four (World Health Organization 2004). Untreated, mental illness can lead to self-destructive impulses or even death by suicide. Mental illness can be both frightening and debilitating and thus warrants all the help that can reasonably be given so that those struggling with it may recover (to the extent possible) and take their place in the home community. Everyone so affected deserves our deepest sympathy, as well as the most effective treatment society can realistically provide. Even treated and well managed, mental illness is a burden unlike any other. Unlike physical illness or injury it is unseen, yet it mercilessly affects the lives of those who have it in untold ways. Perhaps this is why society has had such difficulty understanding or even recognizing this traumatic reality, much less embracing those so affected. And perhaps this is why policy makers are quick to point out that there are no “votes” to be had in mental health policy, no careers to be made. Thus mental health tends to be the stepchild in policy deliberations—the last to be funded, the first to be passed over. We would rather focus on simpler problems with ready solutions. Simply put, mental illness scares us, so we avoid the topic altogether.

Yet on a deeper level we know (or should know) better. We know that all our neighbors—our fellow citizens—deserve to be treated well, and all the more so when struggling with disabling challenges. We know that there is no such thing as a “throwaway” person. We know that American society will be judged not only by our economic and military might but also by how we treat our most vulnerable members. Accordingly, this book is about recognizing and welcoming our neighbors with mental illness, about understanding their plight and their needs, about what we can do as a nation to make their lives markedly better. It’s actually not all that hard to do, except for the resistance to change that is built into all status quo structures. That, of course, is a critical topic and is addressed in the book’s last chapter.

I have had the privilege of working in the field of mental health services for over a third of a century in clinical, academic, and governmental positions. From 1994 to 1997 I was appointed by Governor George Allen to serve as commissioner for Virginia’s Department of Mental Health, Mental Retardation, and Substance Abuse Services (Kelly 1997), and I have served on various mental health commissions and boards. My experiences as psychologist, as professor, and as commissioner have all led me to the same conclusion: it is time for dramatic change (e.g., Kelly 1997, 2003b, 2007b).¹ It is time to transform the mental health system of care so that persons with even the most serious mental illnesses can regain their place in the home community—so that they can have real homes, fulfilling jobs, and deep relationships.

Others have come to this conclusion as well, and thankfully efforts are being made in that direction. However, resistance to chance is fierce, and it is not yet clear whether America’s mental health system will indeed be transformed into an effective and innovative system of care or whether the inevitable pull toward the status quo will win out. This book lays out a road map for achieving lasting transformation. The following are five interrelated recommendations for creating a truly effective mental health system of care:

1. Use results-oriented clinical outcome measures and “evidencebased practices” so as to improve quality of care and accountability.²

2. Open the monopolistic state mental health care system to competition and innovation so as to improve treatment choice and effectiveness.

3. Implement “parity” coverage for mental health treatment so as to increase access to care and coverage, per the 2008 parity law.

4. Empower persons with mental illness and their families to have a voice in mental health policy and service delivery so as to ensure consumer input and satisfaction.

5. Win over (or work around) the keepers of the status quo who resist change so as to move ahead toward transformation with all parties at the table.

These five recommendations must be implemented together, as they overlap and interact to create one whole effect—transformation of America’s broken mental health care system. The following pages explore and explain each of these recommendations in detail.

Men in Diapers

I was only twelve years old, and Kennedy was president, when I first experienced the state mental health care system. The year was 1963, the place was the Lynchburg Training Center in Virginia, and I was one of dozens of Boy Scouts who were parading through the grounds during the hot summer as a tribute to those unfortunate souls who lived their troubled lives confined there. The training center was practically a city in its own right, located across the river from downtown Lynchburg, housing over five thousand men, women, and children, most with severe and disabling mental retardation. The large brick buildings covering many acres had been built long before air conditioning was available, and most opened onto courtyards surrounded by twelve-foot chain-link fencing that looked very much like a prison’s. Our parade route took us along an access road that ran alongside the fenced courtyards.

We marched by the buildings in formation behind each troop’s flag, proud to be in uniform and glad to be doing something that was supposed to be good for others. But as we marched on, the chatter and laughter of the scouts slowly died away. There behind the large fences were dozens of men in diapers—in diapers! Many of them had nothing else on, and they hung onto the fence with strange looks as they watched us pass by. Now and again there would be a ruckus of some sort, with yells and grunts and vain attempts to scale the fence, and people in white would rush over to wrestle the diapered men to the ground. Like the other scouts, I knew absolutely nothing about mental retardation or the horrible conditions of places like the Lynchburg Training Center—including the then-current practice of eugenics. But I knew something was terribly wrong with the men behind the tall fences and with the way they were being treated. And I never forgot the sight of grown men in diapers.

Thirty-one years later, in 1994, I entered the grounds of the training center (now renamed the Central Virginia Training Center) for a second time. But this time I was arriving in a state car driven by my staff, and I was there to assess the quality of the treatment program. I had been appointed by the governor to serve as commissioner of Virginia’s Department of Mental Health, Mental Retardation, and Substance Abuse Services. And I was eager to see whether the horrors of 1963 had been corrected. The buildings looked much the same, but thankfully the fences had been removed and air conditioning installed. Around the grounds could be seen small groups of “residents” walking from building to building accompanied by their caretakers. Everyone was fully clothed. By outward appearances, life was much improved at the training center.

As commissioner, I was given the red carpet treatment—staff presentations, tours, greeting selected residents, a nice lunch. I was impressed by the dedication of the staff, many of whom worked long hours for low pay in a discouraging environment. I was also impressed by the improvements since 1963. Most of the residents seemed reasonably well cared for, some were productively employed, and none were left to wander untended. But I was troubled by the suspicion that much of what I saw was scripted for me and not necessarily representative of daily life at the training center. So I came back several weeks later, alone in my state car and completely unannounced.

This time I did not park in a space specially prepared for the commissioner. Instead, I simply picked a building at random, parked nearby, and walked in. What I saw confirmed my suspicions. I could see two rooms with six or seven residents in each and two staff chatting amiably together in an adjoining hallway. There was a distinct odor of urine and unwashed clothes and a general unkempt/lazy atmosphere, as if there were nothing to do and nobody cared. No one recognized me or made any effort to “get busy,” probably assuming I was just another parent stopping by for a brief visit. As I spoke with the staff and residents, it became clear that this particular building was intended to deal with behavioral problems—residents who had been out of control. That should have meant that these residents would be offered intensive behavior modification treatment until they learned how to appropriately manage anger, frustration, grief, and so on. Instead, they were offered “custodial care,” a fancy term for babysitting. I was seething but kept my thoughts to myself.

In subsequent surprise visits to Virginia’s fifteen psychiatric facilities I had many such encounters. Once I even walked unannounced into a facility director’s office only to find him with his feet literally on the desk, kicking back for a restful afternoon in his comfortable air-conditioned office. (He almost fell over backwards when he saw me.) Worse, I found that custodial care was the norm, not the exception. Time and again I walked unannounced onto a locked psychiatric unit to find the patients over-medicated, slouched on couches, and watching daytime TV together with the staff. This was not just a waste of time and resources, it was unethical and inexcusable. How dare we restrict persons with serious mental illness to locked units only to ignore their pressing need for effective treatment? How dare we offer only custodial care to patients who are vulnerable and completely dependent on whatever is provided? No wonder the mental health care system is described as in a shambles—broken.

This tragic state of affairs was highlighted by a federal commission five years ago. The President’s New Freedom Commission on Mental Health issued its interim report in 2002 and its final report in 2003. Here’s what they found:

America’s mental health service delivery system is in shambles, . . . [and] needs dramatic reform. (2002, i)
For too many Americans with mental illness, the mental health services and supports they need remain fragmented, disconnected and often inadequate, frustrating the opportunity for recovery. Today’s mental health care system is a patchwork relic—the result of disjointed reforms and policies. Instead of ready access to care, the system presents barriers that all too often add to the burden of mental illnesses for individuals, their families, and our communities. The time has long since passed for yet another piecemeal approach to mental health reform. Instead, the Commission recommends a fundamental transformation of the nation’s approach to mental health care. (2003, 1)

These are stunning admissions for a federal mental health commission to make, and they cry out for a response. Other mental health policy analysts are reaching similar conclusions: that the current system is failing and in need of dramatic overhaul (e.g., Mechanic 2008; Olson 2006). It is time to do the right thing—it is time to transform America’s broken mental health system.

Transformation and recovery are what this book is all about—the actions and policies needed to transform mental health services so that persons with mental illness can actually recover and take their place in the home community.³ There are times when sweeping public policy changes become critical for the welfare of the people, and this is one of those times. It is not an exaggeration to say that the quality of life for millions of Americans suffering from serious mental illness depends upon what our nation does in response to the call for transforming mental health services so as to facilitate recovery. Will there be the usual short-lived fanfare of impressive-sounding state and federal proposals, followed by a few half-hearted initiatives, only to end up with the eventual return to the status quo? Or will this nation roll up its sleeves and do the right thing for the sake of those among us who suffer from the most debilitating of illnesses—mental illness?

The following chapters not only make an appeal for taking up this charge but also present a road map for getting there. Strategic policy proposals are offered for state and federal policy makers, mental health providers, consumers and their family members, and third-party payers (public- and private-sector insurers).⁴ For those who are satisfied with the status quo, this book will be of little value. But for those who want to make a difference in the lives of persons with serious mental illness, who want to seize the opportunity afforded by a startlingly honest commission and a time that is ripe for action, read on.

How Bad Is It?

Mental illness is one of the most complex and frustrating health care issues facing society today, and its toll is widespread. Tens of millions of Americans will experience depression, panic attacks, or some other form of mental illness this year. It is estimated that in any given year 26.2 percent of America’s adult population (57.7 million people) meet the criteria for a diagnosable mental disorder (Kessler, Chiu, et al. 2005).⁵ Countless jobs will be lost and lives put “on hold” as individuals and their families struggle to cope with the chaos and heartbreak of mental illness. Some of those with mental illness will attempt suicide, and, tragically, many of those attempts will be successful. In 2003, 340,000 Americans visited emergency rooms as a result of suicide attempts; over 30,000 of those who attempted suicide died (Substance Abuse and Mental Health Services Administration [SAMHSA] 2006).

Ten years ago, the surgeon general found that over $69 billion was being spent annually in direct costs for mental health services, yet often without the results hoped for (Office of the Surgeon General 1999). Today that figure is much higher, but still results are lacking. America enjoys tremendous prosperity and power, but these have not provided a buffer from mental illness and suicide. How did we get here, and what can be done about it?

A Brief History of Mental Health Treatment

Historically, mental illness has often been misunderstood and feared, and those suffering from it have been stigmatized. In colonial America, persons with mental illness were called lunatics, and their families simply cared for them at home as best they could. Often this meant consigning the suffering individual to a basement or attic or some form of restraint for long periods of time until abnormal behavior subsided. (Unfortunately, this is still the case in many countries throughout the world.) “Professional” treatment consisted of humane custodial care at best, quackery or cruelty at worst. By the nineteenth century, “asylums” were built so that those with mental illness could be cared for outside the home community. The various treatments prescribed in those asylums were largely ineffective. In some cases care was provided by well-meaning staff who treated their patients with compassion and dignity, but in too many other cases poorly trained providers took advantage of their position and cruelly mistreated the patients who were at their mercy. For instance, patients were sometimes found virtually abandoned and chained to walls in small rooms filled with human excrement (Goodwin 1999).

Asylums became known as “mental hospitals” in the early twentieth century, and the numbers of Americans committed within their walls grew substantially, reaching a high of nearly 560,000 in 1955. This rise in demand for inpatient care was driven by several factors, including an aging psychiatric population with nowhere else to go. There were also many World War I and World War II veterans whose combat experiences had triggered chronic mental illness, including what is now referred to as post-traumatic stress disorder (PTSD). Many of those hospitalized suffered from a psychotic disorder: they had lost touch with reality and, in most cases, experienced delusions and/or hallucinations.

In the mid-1950s, the discovery of antipsychotic medications such as Thorazine and Haldol sparked a revolution in inpatient mental health care. These new medications at least partially controlled psychotic symptoms so that, for the first time, persons with schizophrenia and other psychotic disorders were able to be discharged and returned to their home communities. Consequently the population in mental hospitals began to drop dramatically, a movement that continues to this day. The average daily census in America’s psychiatric hospitals stood at just over fifty-four thousand in 2000 (SAMHSA 2003). This movement away from hospital care became known as “deinstitutionalization,” since hundreds of thousands of people who would otherwise have lived much of their lives in psychiatric institutions were able to return to their home communities. The initial hope was that antipsychotic medication would do for mental illness what penicillin did for infections—provide a cure. Unfortunately, pharmaceutical treatment and deinstitutionalization, while helpful, also elicited a new set of problems. The medications controlled psychotic symptoms to some extent, and for some patients the results were wonderful. But many others found that they triggered severe side effects such as tardive dyskinesia (unstoppable and often embarrassing repetitive motions) and left the patient feeling overtranquilized, emotionally stunted, and interpersonally dysfunctional.

Moreover, deinstitutionalization led to a predictable need to provide effective outpatient treatment and services so that the many patients discharged from psychiatric facilities could find the support and services required to succeed in their home communities. In response to this need, a complementary revolution in community mental health care soon developed—the community mental health center (CMHC) movement. The laudable goal was to provide outpatient services so that persons with serious mental illness (including those discharged from hospitals) could receive the care needed to live successfully in their home communities. CMHCs were launched with federal funding in the 1960s, and currently many dedicated and talented providers offer excellent care in today’s CMHCs. However, the CMHC system is now too often functioning as a dispenser of ineffective or insufficient status quo services, without the full range of community supports and innovative treatments needed to provide effective care. Consequently it is not unusual for a person with serious mental illness to be discharged from a psychiatric hospital, return to his or her local CMHC, get rapidly worse because of ineffective care, and eventually end up rehospitalized. This vicious cycle is emblematic of a broken system of care and serves the best interests of no one.

The vicious cycle also contributes to a rising population of the “homeless mentally ill” and seems to provide evidence for the claim that deinstitutionalization has failed. In fact both revolutions, deinstitutionalization and community mental health care, are examples of well-in...