by Art Levine
“The best mental health treatment in the world is a job,” Drake once told me, in a moment of enthusiastic hyperbole, at a conference several years ago; of course, as James illustrates, supported employment is offered along with other services, including counseling and if needed, medication. But the ability to find and hold a competitive job is viewed by most experts as a central measurement of recovery and personal fulfillment. Now with two dozen controlled studies worldwide over two decades and the program adopted in portions of approximately twenty states and endorsed by leading European countries, all part of a collaborative network based at the Rockville Institute near Dartmouth, there is clearly interest among the savvier, more dedicated mental health administrators in putting it into practice. But to do so, US agencies and clinics have to overcome an obstacle course of byzantine government disincentives and a hodgepodge of funding sources, barriers that combine to keep people with mental illness permanently impoverished and hopeless for life. Drake and others have partially blamed the billions wasted on medications that often don’t work—government funds that could have been used to hire and train more clinicians and counselors to offer personalized care and cost-effective programs like supported employment.
“It’s all based on false advertising,” he argues. “We spend billions on ineffective medications, and we won’t spend a few million to get people back to work and off of the Social Security rolls. Does that make any sense?”
For mental health programs that just want to help people live independently, it’s a funding and logistical nightmare. Administrators must struggle with obtaining funding from a myriad of different federal and state agencies. Medicaid generally won’t pay for employment support and contradictory, arcane rules make it difficult to cobble resources together. In contrast, it’s always easy for health-care providers to tap into centralized funding sources, either Medicaid or Medicare, to pay again and again for dangerous antipsychotics that can, at their worst, kill people—but no federal agency will coordinate funding for programs that can restore dignity, well-being and purpose to people with a serious mental illness. Drake offers a clear, obvious answer for addressing supported employment, but it isn’t part of the congressional discussion on mental health reform: “Fund treatment and rehabilitation as an integrated and bundled package through Medicaid,” he wrote in 2014. “This solution recognizes that [supported employment] is good treatment, helps people to recover their lives outside of dependence on the mental health system, and reduces costs over the long run.”
A few states, such as Illinois and New Hampshire, have wisely begun paying more to clinics implementing supported employment. In these cases, though, it’s not clear if they would have done that on their own: Class-action disability rights lawsuits brought by, among others, each state’s federally-funded state disability rights legal center under the Americans with Disabilities Act (ADA) have forced some states to adopt evidence-based psychosocial practices. These enable the seriously mentally ill to flourish in their communities, rather than languish in institutional settings or receive third-rate, drug-oriented clinic care—the national norm. As a result of the 2014 settlement in New Hampshire, supported employment is part of a broad package of mandated reforms that serves as a blueprint of effective programs, including Assertive Community Team outreach work and “supported housing”: subsidized apartments combined with access to an array of services that let the seriously mentally ill live independently.
Drake is glad to see more states use supported employment and such allied approaches, but he’s angered at the continuing resistance of most state and federal agencies to providing effective care. “Medicaid hasn’t given much attention to mental health reform, just to cutting costs,” he says. “We’re funding vested interests to suck profits out of the system, rather than helping the patient.”
Despite all the roadblocks faced by supported employment and related psychosocial programs, such as McFarlane’s family-based psychosis treatments, Drake and other proponents remain determined to see proven programs spread more widely. It has been fashionable for political leaders and advocacy groups in Washington to call for the adoption of evidence-based practices and early intervention programs as part of Rep. Tim Murphy’s mental health reform package. But few of the champions of these programs understand how the federal government has handled—or mishandled—such initiatives before and how it continues to undermine them today.
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THESE CAMPAIGNS WERE LAUNCHED YEARS AGO WITHOUT MUCH TO SHOW for it. Drake headed the Evidence-Based Toolkit Implementation Project, a groundbreaking, ambitious program launched in 2001 under the direction of HHS’s feckless SAMHSA, which was first supposed to promote best practices through guidebooks (or “toolkits”) for clinics, agencies and family members. That effort, in turn, was followed by carrying out the practices in a pilot program. The agency, though, after endless rounds of internal discussions and required approvals, didn’t make the toolkits available until about 2008, by which time the supported employment guidebooks (still in online form) and accompanying DVDs were periodically out of stock. Those belated publications were issued well after the second, clinical implementation stage of the project in eight states was already completed in 2005, and their results were published in 2007. Other agency publications were canceled altogether after the one communications office staffer working part-time on preparing all of SAMSHA materials just gave up, a knowledgeable agency source says. A former SAMSHA official familiar with the toolkit program and other agency publication projects admits, “Millions of dollars were wasted and the delays took much longer than anyone expected.” A staffer at a local clinic involved with the project, who had waited in vain for the toolkits says, “SAMSHA officials were totally incompetent and bungled everything,” while some in the agency blamed the Dartmouth Research Center for turning in instructional materials that weren’t reader-friendly.
During that fiasco, Drake’s center, starting about mid-2002, developed their own materials that their staff and contracted technical assistance experts could use in the field, training more than fifty clinics in eight states in a two-year span to adopt five under-used methods, including supported employment and family psychoeducation. Given limited funds, the project simply sought to measure whether clinicians and providers could show “fidelity” to the practices as they were supposed to be implemented because outcomes had already been established in years of well-designed studies on the methods. On that front, at least, there were some major successes: A 2007 Psychiatric Services study showed that more than half the sites could follow these models in practice, with supported employment among the most faithfully implemented of these proven approaches, while they had more trouble carrying out the “dual-diagnosis” programs that treat both mental illness and substance abuse. The clinics got specialized assistance, plus salesmanship on the cost-effectiveness of the programs from Drake and his state allies—but, surprisingly, not extra funds for putting the practices in place.
Later, Dr. Gregory McHugo, a research professor of psychiatry at Dartmouth and a co-author of the 2007 study, wasn’t sure those gains would continue. “They were doing things on a shoestring,” he observed. “The feds just don’t provide enough money for this. You have to put incentives in place to make [clinicians] do the right thing. People in the field respond to incentives and go where the money is.”
Unfortunately, because there’s relatively little money in the mental health system, there’s even greater reluctance to adopt new approaches. By 2014, two years after the shootings at Sandy Hook Elementary School spurred an increase in state mental health funding, funding slowed again. State programs had slashed over $4 billion from their mental health budgets over a three-year period ending in 2012. “This damage is a long way from being repaired,” NAMI reported.
With limited funds, federal and state programs are especially reluctant to adopt the pre-psychosis risk program for young people developed by McFarlane, despite its proven effectiveness. The six
-city, Robert Wood Johnson–funded community outreach study published in 2014 in The Schizophrenia Bulletin found that those with serious pre-psychotic symptoms were three times as likely to remain in school or be working than those who didn’t participate in the early prevention program. Most strikingly, people taking the program were as much as five times less likely to develop psychosis than those with those same early symptoms. All told, using McFarlane’s model or comparable pre-psychosis interventions, fifteen studies worldwide have shown the positive impact of this combination of family-based intensive services, individual counseling and working in partnership with the client to achieve their goals—with low, brief doses of medication as a last resort.
The PIER model that became the basis of the broader six-city study cut the number of people hospitalized for first psychotic breaks by 26 percent in the entire city of Portland, Maine. “If we don’t do anything before they’re hospitalized, we’ll have another generation of people with the illness [schizophrenia] having a 12 to 15 percent suicide rate,” McFarlane points out.
But that is precisely what could happen because NIMH is potentially putting some people at risk by downplaying the value of any pre-psychosis programs, claiming the evidence just isn’t in—and advising state governments that they shouldn’t spend any of the federal “set-aside” grants on them. Despite some in-depth, laudatory coverage of these programs, the media accounts paid little attention to the fact that this proven treatment modality available now—intensive pre-psychosis supports—was being denied federal funding in communities, although NIMH has commissioned some long-range studies in this field. (The media accounts sometimes conflated NIMH’s post-psychotic break programs, known by the acronym RAISE, with McFarlane’s pre-psychosis work that employs similar psychosocial strategies with different, but complementary aims.)
The McFarlane model faced powerful enemies. The NAMI advocacy group strongly opposed allowing states to use federal funds for the program, claiming that it was following the research guidance of NIMH. Congress rejected requests in 2014 for expanded permission to use the funds on pre-psychosis programs from the National Association of State Mental Health Program Directors (NASMHPD), whose leaders recognize the cost-effectiveness of preventing the suicides, homelessness and hospitalizations resulting from psychotic breaks. Nevertheless, in 2015 and 2016, at the urging of NAMI and NIMH, congressional budget bills banned spending any early-prevention set-aside funds—from the $520 million in total “block grants” to the states—on pre-psychosis programs. Stuart Gordon, the state program directors’ policy director, says of the opposition of NAMI and federal officials to such spending, “It’s really odd that major mental health organizations should oppose a prevention intervention.” In a mental health system struggling for funds, however, the emphasis on primarily helping early on those who have recently been hospitalized for a psychotic break makes a certain economic and public health sense, even if more people could be helped before becoming psychotic.
Federal officials haven’t yet commissioned research on Open Dialogue, a promising crisis-intervention response to young people experiencing early psychotic episodes. Open Dialogue was studied in a recent small pilot project in Massachusetts. It shares some of the cooperative, flexible spirit of McFarlane’s PIER psychosis prevention approach, but goes well beyond RAISE and other post-break psychosis programs in downplaying the role of psychiatric medications. It has been championed by critics of conventional psychiatry because of the astounding reported results popularized in Robert Whitaker’s influential 2010 book Anatomy of an Epidemic, although it hasn’t been replicated in randomized controlled studies, as with RAISE and the overseas research on PIER-style programs. A five-year observational study of forty-two young participants in Open Dialogue in rural Finland, where it was first developed, found that 86 percent of those diagnosed with psychosis were now working or in school, 14 percent were disabled and only 17 percent were still being prescribed antipsychotics.
“When I first saw those results I thought there’s no way this could be true, it’s implausible,” says Dr. Chris Gordon. He ended up developing an Open Dialogue pilot project as medical director of the Advocates community mental health program in Framingham, Massachusetts, working with a team of University of Massachusetts and Boston University researchers. After visiting Tornio, Finland, and meeting with the chief academic researcher there, he concluded, “The reported outcomes are exactly as they said. This isn’t a flim-flam.” The approach is as much a philosophy as a specific method: it involves a pair of therapists approaching the person in crisis and their families at home and working in collaboration with them on how they can provide help. Open Dialogue doesn’t rely on diagnostic labels the clinicians view as stigmatizing, or, in many cases, medications. “We meet the person where they are and engage with the person in crisis with a wide open mind,” says Gordon.
Partnering with Dr. Douglas Ziedonis, the chairman of the UMass psychiatry department, and his research colleagues at Boston University, they published in Psychiatric Services in July 2016 the results of a small fourteen-person study: it showed that nine of the young men and women enrolled in the program were still in school or working. Yet even in this empathetic, low-medication, cooperative approach, medications and hospitalizations were used. During the course of the year, four of the people needed to be hospitalized, two of them involuntarily, a 28 percent one-year relapse rate that’s roughly equivalent to conventional treatment. And while some of the people, ages fourteen to thirty-five, went off their meds or began taking medication, by year’s end, 50 percent of the participants were taking antipsychotics. The real importance of the program, Gordon argues, is this: “It’s empowering people to do better in their lives through shared decision-making and enhancing their connections to their support network.” But it’s not likely to be widely adopted in the US without rigorous controlled studies backing it. But thanks to a New York Times article on the program and other alternatives in August 2016, it’s now on the map for policy-makers and may eventually draw NIMH’s interest.
Despite the brief flash of publicity for McFarlane’s pre-psychosis programs and, more recently, Open Dialogue, most of the media attention has focused on RAISE, the well-researched Recovery After Initial Schizophrenia Episode program. That’s a related but different early psychosis program, led by NIMH, that emphasizes the value of low-dose medications and combined psychosocial services for those experiencing “first-break” or early psychotic episodes. Announced with a flourish in September 2015 with the publication of a two-year study in the American Journal of Psychiatry, RAISE showed significant but modest improvements in symptoms, school and work functioning of those enrolled in the program after psychotic breaks, but no difference in hospitalization rates—a critical barometer of recovery that has been dramatically cut by the McFarlane model and other pre-psychosis treatments. McFarlane critiqued the high repeat breakdown rates of RAISE: “That’s nothing to boast about.” (In an email, NIMH officials explained away a troubling repeat hospitalization rate of 34 percent for both conventional and RAISE treatments by contending that by comparison the community care treatment was actually quite good.)
Still, RAISE deployed an array of services similar to the McFarlane model and Open Dialogue, although RAISE generally placed a greater emphasis on using antipsychotics, but in low doses and in consultation with the young clients. Also, like McFarlane’s approach, it offered family support programs and one-on-one talk therapy. What drew so much media attention was that RAISE, like McFarlane’s work, not only eschewed high doses of antipsychotics and other psychotropic drugs but collaborated with patients when a medication plan was needed—a far cry from the drugging onslaught that played a major role in the deaths of Gabriel Meyers and Andrew White.
One beneficiary of RAISE is Belle, a twenty-three-year-old student in Portland, Oregon, now studying to be an occupational therapist. As a teen, her early depression and anxiety eventually blossomed into a full-blown psychotic episode at n
ineteen after her psychiatrist crudely diagnosed her as having ADHD, then plied her with a stimulant and the antidepressant Effexor. The combination of medications, Belle believes, pushed her into a downward spiral when she began hearing voices, staying up sleepless for days and becoming paranoid. In response, the doctor just added some new medications, including Zoloft and Adderall, the amphetamine that, as with Kelli Grese, has possible psychosis side effects. “She blew past the risks,” Belle says. Despite hospital stays, she didn’t really improve after she got a mix of mood stabilizers and antipsychotics that kept changing. Before she was discharged a final time, a nurse referred her to Oregon’s Early Assessment and Support Alliance (EASA), a program that is among the leaders in the nation in developing both pre-psychosis and “First Episode” psychotic break approaches.
In Belle’s case, she was enrolled in a program similar to RAISE and was immediately struck by the empathy, concern and attention to her goals that the treatment staff offered her. She had failed all her previous classes and lost most of her friends from her bizarre behavior. So when they asked her, “What do you want to do?” she told them that she wanted to return to school and taper off her medications. She weaned herself off of most of her meds (but still stays on a mood stabilizer), graduated college after enrolling again part-time and started working as well. “My functioning improved and I learned to empathize with myself,” she says. Their caring approach also inspired her career goal as an occupational therapist.