The future of mental health care is being shaped along two trajectories. Along one of them races scientific progress. Along the other path inches social reform.
If science fails, it will not have been for lack of trying. A Rand Corporation study found that more than 220,000 mental health research papers were published between 2009 and 2014, supported by more than nineteen hundred funders worldwide.1 The United States dominated the field, the report stated: as both the largest producer of research at 36 percent of publications, and as the largest recipient of government and private funding at 31 percent.
The recent trajectory of science and technology clearly has revitalized the hope—indistinct though it remains—of a cure for chronic afflictions such as schizophrenia. Progress in this area has been stunning. Neuroscientists speak of a golden age, borne along by such breakthroughs as the gene-editing tool CRISPR, the so-called “brain-to-text” decoding system, the revolutionary rise of optogenetics.* 2 In 2014, the Sweden-based global technology developer Luvata finished work in its Waterbury, Connecticut, labs on the leviathan INUMAC.* This most powerful MRI scanner—to date—contains a magnet capable of lifting a sixty-metric-ton tank and containing more than 125 miles of superconducting cable. The magnet and cable produce a field strength of nearly twelve teslas—units of measuring flux density—which greatly exceeds any MRI system. This will enable the giant instrument to produce ultra-high-speed, crystal clear diagnostic “snapshots” of events in the brain. It sells for about $270 million.
Advances such as these have virtually enabled scientists to set up shop inside the brain, creating submicroscopic observation posts in its neural pathways. In the words of one neuroscientist, “Fundamentally [they show] that bipolar disorder, and in fact all mental illnesses, are brain disorders of a biological nature that warrant proper investigation including scanning. And that that will be of clinical utility in the near future.”
As for the past, it is hardly even prologue. Mental illness as a product of biology overrides the legacies of modern theorists from Sigmund Freud to Eugen Bleuler to Thomas Szasz. (Emil Kraepelin, his admiration for “racial hygiene” aside, granted biology its place in schizophrenic affliction, and is regarded as the father of “scientific” psychiatry.)
Such innovations, of course, require a reliable and constant infusion of money. Here, the picture is volatile, yet encouraging.
Private investment funding, a sine qua non of this research, and development, rises and falls, often dramatically, largely on the nation’s economic health, and currently is on an upswing. Its general stability probably owes much to economists’ faith in the potential wealth contained in those hundreds of global labs engaged in cognitive neuroscience: “the greatest untapped market of all,”3 in the words of one.
In 2013, President Obama introduced a long-term funding initiative for creating innovative hardware in the fight against neurological afflictions. The BRAIN project allocated $100 million for its first phase, creating the means to investigate the firing patterns of all neurons in a circuit toward the goal of controlling them.
As noted, such incursions have not yet produced a cure. And as we have seen, the demonstrated adaptability of CRISPR and other new instruments of gene-altering remains a matter of urgent ethical concern. Researchers and entrepreneurs have an enormous ethical responsibility to ensure that the cure and the disease do not merge.
Given all this sobering potential to reactivate the dream of perfecting mankind, applied science does seem to indicate that help is on the way.
Yet, while the global science/technology Ahabs sail resolutely ahead, hoping to finally harpoon a quarry that still eludes their swelling arsenal, our society and its political leaders seem largely content to lounge on the docks and wonder: “What whale?”
As mental health research flourishes, mental illness care in the United States remains in chaos. It has always been in chaos, yet in our time the chaos has accelerated and spread. And the chaos and its social effects grow normative, diminishing everyone’s civic and private well-being.
As this book has shown, insane offenders against the law are routinely convicted and warehoused in jails and prisons, and the jail and prison populations swell beyond the limits of health and decency, and the watchdog groups issue statistics and the media report them, and people wonder what can be done, and then they cease wondering.
Sometimes a little reform does occur. The US Supreme Court ruled in 2011 that the overcrowding in California prisons was unconstitutional. This was four years before the state’s district judge Lawrence K. Karlton made his similar ruling prompted by the overuse of Tasers, pepper spray, and solitary confinement, which traced to the same problem. (The judge died at age eighty shortly after his 2015 ruling.) The high court sternly ordered that the correctional system population be reduced—to 137.5 percent of design capacity.
Today, the systematic abuse of these prisoners by guards and wardens, often resulting in death or suicide, is reported with even greater frequency, yet is greeted with proportionate public apathy. Apathy is not a feature, however, amid the families of these victims, families who are largely African American and poor. It is impossible to quantify the collective erosion of happiness, optimism, productivity, and faith in civic institutions within this wronged and ravaged subpopulation. Yet it is hardly impossible to speculate. These erosions almost surely add up to a wider stain of civic withdrawal in these communities; a deeper contempt for the idea of citizenship in America.
Surviving prisoners who serve out their terms are tossed back into the world with their mental afflictions intact, and very often worsened by beatings, solitary confinement, and deprivation of psychiatric care and medication. A great many of these unfortunate social “throwaway people” have no real impetus or choice but to repeat the corrosive patterns introduced by the great asylum exodus of the 1960s and beyond: homelessness, drugs, street crime, rearrest (the lucky ones), conviction, reincarceration.
Mass shootings by people in psychosis create freshets of outrage—not over our poor and porous identification, care, and oversight of mentally disturbed people, but over the laxity of our gun-control laws. Gun-rights advocates hear these outcries, and call, not with any great passion, for mental health care reform. Then the conversation drifts to other things, until the next massacre.
Police shootings of mentally ill victims, mostly black and poor and unable to find help, inspire similar freshets, with similar results.
Suicides take the lives of thirty-eight thousand Americans a year. About 90 percent of suicides are the result of mental illness.
It is estimated that mentally ill people die earlier than sane people by an average of twenty-three years. They die as victims of violence; they die of suicide; they die of disease and neglect and exposure on the streets. Their average life expectancy is on a par with that of people in Bangladesh.
One might assume these and other symptoms of chaos in mental health care would long since have brought about a countertsunami of redemption and reform, a national initiative, perhaps, fed by support from federal and state governments, foundations, corporations, charities, Internet donors. Yet they have not. While it is true that a handful of legislators, journalists, academic figures, and individual citizens have made heroic attempts to garner sustained attention and support for the plight of the mentally ill, their efforts have yet to catch fire with the populace.
The national inertia certainly does not stem from a lack of information or ideas. The information and ideas are everywhere. The information and ideas flow in a daily stream from endless sources of expertise: the National Institute for Mental Health, the World Health Organization, the American Psychological Association, the National Alliance on Mental Illness, the American Medical Association, the National Institute of Science, the Treatment Advocacy Center, the Justice Department, mental health departments and divisions in every state, and an abundance of collectives, psychiatric associations, think tanks, seminars, journals, and bulletins. These sources, whose findings are filtered through the press and the Internet, often disagree. Often, their data-gathering structures, and thus their data, vary widely; definitive truth on any area of mental illness is as elusive as a cure. Yet one has only to reach out and pluck a handful of the million factoids that rocket through cyberspace to grasp the dimensions of this societal scourge.
The most troubling items in this factoid blizzard involve false economics. They paint a picture of an American society that does not want to pay for the care of crazy people and of state governments that happily gratify their wishes, chopping mental health budgets at every opportunity. Taxpayers and legislators alike seem generally ignorant of the extent to which they are being soaked by the hidden costs of this parsimony. For instance, public care costs far less than public jails. The National Alliance on Mental Illness has estimated that for every $2,000 to $3,000 per year spent on treating the mentally ill, $50,000 is saved on incarceration costs. Prisoners with mental illness, in NAMI’s reckoning, cost the nation an average of nearly $9 billion a year.4 Between 1998 and 2006, the mentally ill population of all prisons and jails in America increased four times, from 283,000 to 1,264,300. Reports of mental health problems among state prison inmates have reached a rate of 56.2 percent of the prison population, as compared to 11 percent in the general adult population.5 As National Affairs declared in 2013, “The financial costs of large-scale incarceration are immense.” The journal estimated that housing a prisoner for a year costs “between $10,000 for a low-security inmate… to more than $100,000 for maximum-security inmates in states with high prison-guard salaries.”6 The journal quoted Bureau of Justice estimates that total spending on prisons and jails in 2010 were to be nearly $50 billion—nearly $500 a year for every US household.
Nevertheless, between 2009 and 2011 and following a severe recession, states cumulatively cut more than $1.8 billion from their budgets for services for children and adults living with mental illness. California led the nationwide slashing with cuts totaling $587.4 million.
Thomas Insel, the former director of the National Institute of Mental Health, has estimated that mental illness costs taxpayers $444 billion a year. Two-thirds of that total is eaten up by disability payments and lost productivity. Only a third is spent on medical care. “The way we pay for mental health today is the most expensive way possible,” Insel has said. “We don’t provide support early, so we end up paying for lifelong support.”
And speaking of medical care, NIMH has estimated that two-thirds of children with lifetime mental health problems never receive treatment.
The availability of psychiatric counseling, especially for those showing early signs of mental illness, is believed to be essential in staving off full manifestation of the disease. Yet psychiatry is receding as a specialty of choice for emerging doctors. The calling has never fully regained the prestige it lost in the 1960s under the assault of Thomas Szasz and his kindred mental illness deniers, even as current brain science repudiates their claims. As of 2010, the United States claimed 46,000 psychiatrists, a painfully small number in a nation of nearly 325 million. Although recent cutting-edge reform theorists now call for a revitalized system of psychiatric care conjoined with sophisticated psychotropic regimens, American medical students are rejecting psychiatry as a choice.
The shortages are especially critical in rural America and among poor African Americans and Latinos in urban neighborhoods. Only an estimated seven thousand psychiatrists specialize in consulting with children and adolescents—the groups most in need of such care.
The indifference to the suffering of mentally ill servicepeople and service veterans remains a national disgrace. The suicide rate among Army personnel, on a steady rise since 2000, reached a record in 2012 and exceeded the number of Army deaths in Afghanistan. In 2009, almost 76,000 veterans were homeless for at least a night, and 136,000 spent at least one night in a shelter.
Within this miasma of indifference, neglect, and budgetary foolishness, however, there are signs that the nation is being roused into action. Enlightened journalists, academic theorists, legislative leaders both state and federal, and a growing network of local/regional experimental rehabilitation movements are pointing the way toward an era of regeneration in the lives of the mentally ill.
Those mutual antagonists of activism, E. Fuller Torrey of the Treatment Advocacy Center and the fiery science writer Robert Whitaker, between them have contributed a long list of densely researched books that investigate all angles of chronic mental illness, its sources, spread, false doctrines, the damage done by false prophets and true profiteers, and the possible paths to support. Torrey and Whitaker continue along vigorously in their careers as thinkers, writers, and ombudsmen on behalf of the insane.
Another indispensable advocate is the aforementioned Pete Earley, the author of Crazy: A Father’s Search Through America’s Mental Health Madness.7 The eminent social-justice journalist and author turned his furious attention upon the mental health care labyrinth when his adolescent son “Mike”—Earley has withheld his son’s actual name—developed symptoms of bipolarity and nearly was devoured by the criminal justice system. After laying bare the Kafkaesque frustrations of trying to get help from the system, Earley began to travel the world speaking on behalf of the mentally ill. Through his website, http://www.peteearley.com/, he reports aggressively on abuses and reforms in this universe, and he offers guidance and advice to those in need of it.
If America can be said to have a political statesman of mental health reform, it would be Tim Murphy, the seven-term Republican congressman from the Eighteenth District of Pennsylvania. In 2013, Murphy, a lieutenant commander in the US Navy Reserve and a practicing psychologist with a PhD in child psychology, introduced the Helping Families in Mental Health Crisis Act. Murphy notes that “the federal government spends $125 billion on mental health, but there is little interagency coordination on programs.”8 His bill—in its original form—mandated creation of an assistant secretary for Mental Health and Substance Use Disorders, who would oversee mental health programs and policies, and a Serious Mental Illness Coordinating Committee composed of experts from the public and private sectors to collaborate on strategies for treating serious mental illness. The act authorizes $60 million in grants over four years to implement assisted outpatient treatment of the sort envisioned but not consummated half a century ago by the engineers of deinstitutionalization. This measure would allow courts “to order certain mentally ill individuals with a history of arrest, hospitalization, and whose condition will worsen without medical care, to comply with treatment while living in the community.”
Murphy’s bill would amend the problematic and often misunderstood privacy rules of the Health Insurance Portability and Accountability Act (HIPAA) to allow parents and other caregivers to receive the private health information of a mentally ill person under their care. Contemplating the plague of violent abuse by untrained police officers and prison guards against schizophrenia victims, the bill would require advanced training for people in such positions.
Murphy has recognized that even though small-scale community care is far preferable to the dismal asylums of the past, some patients’ afflictions are severe enough that they need sustained treatment in an institution. A provision of his bill would remove regulations that prohibit “the same-day billing under Medicaid for treatment of physical and mental health in the same location on the same day for the same patient.”
The Helping Families in Mental Health Crisis Act would also authorize $40 million in additional funding for President Obama’s BRAIN Initiative. It would mandate the Department of Education to work with social-media companies in an effort to destigmatize mental illness. It would encourage badly needed professional volunteerism at community centers by providing Federal Tort Claims Act malpractice insurance for doctors who want to be of service.
The ideas encoded in Tim Murphy’s bill amount to a historic departure from the passivity and ineptitude shown by the federal government in response to the chaos of mental health care. Yet they do not represent a consensus of advocates and reformers in the field. A sweeping denunciation came from the Washington-based Judge David L. Bazelon Center for Mental Health Law, a national legal advocacy organization and part of an extensive coalition of libertarian-leaning advocates. An unsigned editorial on Bazelon’s website declared that Murphy’s legislation, “if passed, would reverse some of the advances of the last thirty years in mental health services and supports. It would exchange low-cost services that have good outcomes for higher-cost yet ineffective interventions.” Bazelon’s core objections seem rooted in that most numbing and intractable of schisms that divide those who would remedy mental health care: the moral and constitutional legitimacy of intervention against a patient’s will. The editorial continued: “Among the problematic provisions of Rep. Murphy’s bill is… a grants program to expand involuntary outpatient commitment, under which someone with a serious mental illness is court-mandated to follow a specific treatment plan, usually requiring medication.” The writer asserted, “The facts show that involuntary outpatient commitment is not effective, involves high costs with minimal returns, is not likely to reduce violence, and that there are more effective alternatives.” The facts asserted by Bazelon well may exist, yet they were not presented in the editorial.
A private outreach organization with community-based goals similar to those outlined in Murphy’s bill is Clubhouse International, a group that traces its conceptual roots to the 1940s.
Clubhouse is modeled after Fountain House, which sprang from the efforts of some patients who had been discharged from a New York state psychiatric hospital. Their idea was to invite mentally ill people into an enclave of kindred spirits from similar backgrounds who would provide them with companionship, care, and work/recreation opportunities. Fountain House continues today with an annual membership of some thirteen hundred people, and its structure has inspired similar programs in more than thirty countries. Clubhouse, prominent among the groups that followed the template, is now a worldwide nonprofit organization. Its members are supervised by staff members who guide them in learning workplace skills, forging strong personal relationships, finding adequate housing, and pursuing educational resources. Clubhouse does not provide therapy or administer medications, but it maintains ties with psychiatrists who offer those services.
Murphy’s bill was passed in the Republican House of Representatives by a vote of 422 to 2. President Obama signed it into law in December 2016.
As we see through the work of impassioned pathfinders from Dorothea Dix to President Truman, NAMI founder Harriet Shetler, E. Fuller Torrey, Robert Whitaker, Pete Earley, and Tim Murphy, among many others, the crusade to eradicate the chaos of mental health care could not survive without the inspiration and breakthrough achievements of leadership and vision at the national level. The value of such figures is at once symbolic and real. The eloquent, charismatic Dorothea Dix awakened the hearts of staid, frequently officious men of power in the mid-nineteenth century and channeled their power to reforms. A pugnacious and plainspoken Harry Truman used his executive power to push through and sign the National Mental Health Act in 1946. A fresh cadre of such national figures is necessary in our time. Perhaps a new charismatic leader of the cause will emerge from within the communities of people bereaved by the loss of a loved one to a failure within the present chaotic system.
The future will be decided in a thousand American urban neighborhoods and suburban conference centers and small-town church basements and library meeting rooms and rural kitchens. It will be decided by selfless stewards such as my ruddy-faced fellow Castleton townsman Willem Leenman, who for forty years, along with several staff members, has directed an eleven-occupancy home for men afflicted with schizophrenia and bipolar disorder. The handsome old white-frame bears the unassuming name FortySeven Main Street. Leenman’s parents founded the facility after the family moved to America from the Netherlands. It is supported entirely by private funding. Leenman has admitted that he doesn’t realize much of a profit, yet his passion for the well-being of his charges has never faltered. To watch these men as they trudge along Main Street, slowly yet with dignified bearing, is to understand in one’s heart that someone cares about crazy people.
The future of mental health reform will depend upon whether enough people gather in enough of such venues as these to complete the work of Dorothea Dix by joining to reject and extinguish our modern Bedlams, and replace these Bedlams with a reborn and more sophisticated and more enduring program of moral care. It will depend upon whether enough people will take notice of and be inspired by the rediscovery made by sociologists and psychiatrists: that kindness, companionship, and intimate care are demonstrable counterforces to deepening psychosis. Not cures, but counterforces, particularly when practiced in concert with psychotropic regimens that fit the specific nature of a person’s affliction as well as that person’s specific biosystem.
It will depend upon whether enough people will recognize and volunteer their participation in one of the several ventures around the country similar to that created by the innovative psychiatrist Courtenay M. Harding. In 1985, Harding, a pioneer of the current “recovery” movement, created the Vermont Longitudinal Study of Persons with Severe Mental Illness, an experiment that validated the notion that community care balanced with proper medication can help restore many severe schizophrenic sufferers to happy and productive lives.
The study drew upon the work of George Brooks, a Vermont hospital clinical director who in the early 1950s took a critical look at Thorazine, the first of the “miracle drugs.” Brooks prescribed the drug to “back-ward” schizophrenic patients who had been considered hopeless. Less prone to marketing blandishments than most of his colleagues, he looked beyond the hype and noticed that many of his patients remained unable to leave the hospital despite receiving a high dosage of the new drug. Brooks crafted an experiment that resonated with the assumptions of moral care. He invited his patients to take part in a program of “psychosocial rehabilitation.” As Harding wrote in a 2002 essay for the New York Times, Brooks, with the help of his staff, mentored his patients “in developing social and work skills, [and to] cope with daily living and regain confidence. After a few months in this program, many of the patients who hadn’t responded to medication alone were well enough to go back to their communities. The hospital also built a community system to help patients after they were discharged.”9 It featured “home-like” conditions, complete with regular group therapy, the option of halfway houses and outpatient clinics, and job placement.
Harding, then a professor of psychiatry at the University of Vermont who knew of Brooks’s work, joined with him in the 1980s. She recruited a team of psychiatrists to observe and track the fortunes of former patients in Brooks’s original program. In 1985, the team conducted its last of several follow-up assessments of those patients who agreed to be interviewed. Harding wrote that 51 percent of the 168 subjects still living were rated as “considerably improved” or “recovered.” She added, “The most amazing finding was that 45 percent of all those in Dr. Brooks’s program no longer had signs or symptoms of any mental illness three decades later.”
After that, Courtenay Harding repeated her evaluation protocols through more than eight years of assessing former patients at the Augusta State Hospital in Maine. These people were matched, as closely as possible, to the Vermont volunteers by age, gender, and other criteria. The results were not identical to the previous study: the subjects in Maine did not do as well as those in Vermont in a number of categories: productivity, community adjustment, and persistence of symptoms. Still, they showed a remarkable recovery rate of 48 percent.
(It is important here to stress a point I have made before: Harding does not equate “recovery” with “cure,” though her criteria for the two conditions often seem nearly identical. “I define recovery,” she has said, “as reconstituted social and work behaviors, no need for meds, no symptoms, no need for compensation.”)10
These differences prompted Harding to make a “collateral” discovery that confirmed conventional neuroscience theory: that environment is an important factor in determining the onset and degree of schizophrenia. The Vermont patients were part of a cutting-edge rehabilitation experiment, whereas those in Maine received traditional care.11 As Harding put it, “The Vermont model was self-sufficiency, rehabilitation and community integration. The Maine model was meds, maintenance and stabilization.”12
Since then, Harding has held a series of faculty appointments as a professor of psychiatry, and she has lectured in the United States and around the world on the efficacy of disciplined, professionally supervised community care for chronically ill mental patients. Her philosophy, known among psychiatrists as “psychosocial rehabilitation,” is practiced in an estimated four thousand “dedicated” programs around the country.
In reporting on the rise of community centers for mental health care, I do not categorically endorse them. Given that mental illness itself is subject to endless definitions and cultural biases, not to mention predatory claims by spurious healers of various sorts and by errors among the best-intended professionals, it would be foolish to believe that a decentralized archipelago of self-professed clinics and treatment enterprises is uniformly safe or even legitimate. My personal belief is that oversight and credentialing—by affiliated hospitals or state agencies—must be a mandatory component of any community system. The lessons of deinstitutionalization are too recent, too destructive, and too clear to ignore.
That said, the future of care for the mentally ill will depend upon whether Americans can recognize that their psychically troubled brothers and sisters are not a threat to communities, but potential partners with communities for not only their own but the community’s regeneration. That the mentally ill need not be distractions from pursuing the good life. Instead, they can be instruments of the good life for others, even as they each enjoy a good life themselves. Their needs, their stories, their presence in our lives, and their capacity for responding to the outstretched hand of a neighbor can immeasurably enrich not only the ill person but the neighbor as well. The mentally ill people in our lives, as they strive to build healthy, well-supported, and rewarding lives for themselves, can show us all how to reconnect with the most primal of human urges, the urge to be of use, disentangling from social striving, consumer obsession, cynicism, boredom, and isolation, and honoring it among the true sources of human happiness.
To put it another way: the mentally ill in our society are awaiting their chance to heal us, if we can only manage to escape our own anosognosia and admit that we need their help.