National Alliance on Mental Illness
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By Rob Gurwitt
Reprinted with permission from the author; it was first published in the October, 2008 issue of Governing magazine
We know how best to care for the mentally ill. But most states lack the political will to coordinate and fund services.
When a public system issues a cry for help, it often does so in horrific ways. Sure, there are stacks of polite studies and the occasional sharply worded report, pleas from advocates and the dogged efforts of a few legislators. But more visible than any of these is abject failure.
There's Esmin Green, for instance, caught on video this past June keeling over and dying on the floor of a psychiatric emergency-room waiting area in a Brooklyn hospital after sitting for more than 24 hours hoping for care. There's Seung-Hui Cho, the Virginia Tech shooter, released from a psychiatric hospital for court-ordered outpatient treatment he never sought and no one knew to enforce. There's Sarah Crider, a 14-year-old girl who died in a pool of her own bloody vomit in a Georgia state mental hospital, one of 115 psychiatric patients in the state's care who died under questionable circumstances between 2002 and 2007.
There are the U.S. Justice Department investigations over the years of abuse or neglect at mental institutions in Vermont, Hawaii, California and other states. There's the jaw-dropping fact that the three largest in-patient institutions for the mentally ill in the country are the Los Angeles County Jail, Chicago's Cook County Jail and New York City's jail complex on Riker's Island.
"There are things that happen in the mental health care system you couldn't imagine happening in the so-called 'health system' — as if the parts of the body are disconnected," says Dr. Ken Duckworth, a former commissioner of mental health in Massachusetts who now serves as medical director for the National Alliance on Mental Illness (NAMI). "I can tell you there's no parallel thing happening in American cardiology. People are not languishing or being neglected in cardiology wards across America."
To be sure, there has been progress since 60 years ago, when the journalist and historian Albert Deutsch published his scathing indictment of public mental hospitals in America, "The Shame of the States." He described "buildings swarming with naked humans herded like cattleÉpervaded by a fetid odor so heavy, so nauseating, that the stench seemed to have almost a physical existence of its own." In many states today, only the most severely ill spend time in a public mental hospital. The majority receive treatment that is more effective and humane than did their predecessors, and a variety of public funding programs allow many to receive medical care and support services while living in the community.
Overall, state governments have made measurable strides toward improving the systems that care for some of the most vulnerable members of American society. There have been sustained and even heroic efforts to improve conditions in mental hospitals, build community mental-health systems, crack funding silos that make it difficult to serve patients with multiple needs, and create support systems aimed at providing housing, job training or 24-hour crisis services. States are finding ways to deploy what are known as Assertive Community Treatment teams, aimed at helping people with serious mental illness who are living outside of institutions and need a variety of services. To reduce what's become known as the "criminalization" of the mentally ill, police departments have undertaken training programs, state judicial systems have set up diversion projects and mental health courts, the Council of State Governments has launched a concerted effort to work with criminal justice systems around the country and the National Association of Counties is lobbying Congress to create a national commission on the subject.
Yet for all these advances, state mental health systems today are struggling, bedeviled by the ease with which their budgets get cut, by the political obstacles to increasing them, and by bureaucratic tangles that often seem to put the patient's needs last. When health economists Richard Frank and Sherry Glied sought a title for their recent look at how mental health care has improved, they settled on the tepid endorsement "Better But Not Well." When NAMI issued its 2006 "Grading the States" report on state mental health systems, it could find only two states — Ohio and Connecticut — that rated a solid B; most got Cs or Ds, and eight failed. President George W. Bush's New Freedom Commission on mental illness was equally gloomy. Only one of every two people who need mental health care receives it, the commissioners pointed out, and "the individual who reaches care may find that many treatments and services are simply unavailable." The mental health delivery system, the commission declared in its 2002 interim report, "is in disarray." If Albert Deutsch were working today, perhaps he'd be penning "The Embarrassment of the States."
A Slow-Motion Train Wreck
Even a casual glance around suggests why. In May, the U.S. Justice Department announced that conditions in Georgia's mental hospitals violated the civil rights of patients and threatened to take the state to court. In North Carolina, state reviews of reforms enacted seven years ago found a system that has lost its bearings, misspends millions of dollars on ineffective services, and is desperately short of staff: "A slow-motion train wreck," one newspaper called it.
States everywhere are struggling with chronic shortages of money, systems that don't mesh, severe shortfalls in the number of psychiatric beds, and punishing backlogs. "We have a remarkably dysfunctional system," says Dr. Jeffrey Geller, who runs the public-sector psychiatry program at the University of Massachusetts Medical School in Worcester. "I'm not sure that even Rube Goldberg could have come up with this system."
Yet there is no great mystery within the field about how public mental health systems should operate. The goal is what's known as a "continuum of care," in which state hospitals for the most severely ill are fully integrated with a spectrum of community-based services, such as short-term inpatient facilities, crisis centers, Assertive Community Treatment teams, housing and job-placement programs, and jail-diversion programs. "You want patients to be able to flow from the community to the hospital and from the hospital to the community, and for hospitalization — if it's needed — to be brief," says Dr. Robert Vidaver, the recently retired director of New Hampshire's state mental hospital. "The sine qua non of getting a patient out of the hospital is having a place for him to live in the community, some kind of home, some kind of intervention when things go bad so you can try to maintain them in the community and help them keep their bonds."
The key to all this is a balance between adequate inpatient slots and a robust set of community services — a balance many states have had trouble striking, especially as they cut or fail to fund the community services that might keep people out of inpatient beds — all the while cutting the number of those beds. Earlier this year, the Treatment Advocacy Center, a nonprofit focused on improving the delivery of psychiatric care and services to the severely mentally ill, issued a report comparing the need for psychiatric beds to their availability. It found that while 340 public psychiatric beds existed for every 100,000 U.S. citizens in 1955, only 17 did in 2005. The total shortfall compared to what's needed for "minimal" psychiatric care, the report estimated, is 95,000 beds.
All of this is a legacy of the de-institutionalization movement of the 1960s and '70s, the laudable effort to stop warehousing the mentally ill in large state institutions and return the vast majority of them to a community setting. Ever since, states have been struggling to get the balance right. Those that have seen the most problems, says Mike Fitzpatrick, a former Maine state legislator who is now NAMI's executive director, are the ones with "too much investment in inpatient facilities and too little in the community, or the ones that tried to jump to community care too fast and now have too few inpatient beds and an undeveloped community system."
Georgia's is a prime example of a system that is heavily weighted toward an over-burdened and underfunded set of state hospitals. The public cost, as an in-depth investigation by the Atlanta Journal-Constitution discovered, can be quite high.
Republican suburban vote
In the summer of 2006, says Alan Judd, one of the reporters who pursued the story, several people who worked at the state mental hospital in Atlanta alerted the newspaper to the death of young Sarah Crider, whose severe stomach pain, nausea and vomiting had been ignored, and who died the following day of an impacted colon. Looking into allegations of overcrowding and inadequate staffing at the hospital, Judd and his colleagues began to explore how extensive the problems were elsewhere in Georgia.
Painstaking research led them to a pattern of abuse, neglect and sometimes abysmal medical care in the seven state mental hospitals. The resulting newspaper series sparked a Justice Department investigation, which resulted in a blistering letter to Republican Governor Sonny Perdue threatening a civil rights lawsuit unless the state makes a series of changes, including hiring more medical and support staff for the hospitals and training current staff better.
One of the Journal-Constitution's more troubling discoveries was that about 5,000 mental patients had been discharged to nowhere in particular, a finding that was echoed by the Justice Department, which revealed that patients were routinely discharged to homeless shelters, motels or bus stops. "Literally, there are categories in the discharge data of 'street corner' or 'public building,'" says Judd. "They will discharge someone knowing they have no place to go."
That is because Georgia possesses an uneven system of community care. "Where care is offered, it can be very good," says Eric Spencer, executive director of NAMI-Georgia, "but in no case is there a continuum of care for a person transitioning all the way through from crisis mode to being in recovery and having a job and a place to live." For the past decade, he notes, the state's mental health system has experienced budget cuts every year. The result is that the system as a whole lacks the depth to care for people who are not in immediate crisis. "We can't spend the money we need to in the communities," says Spencer, "because we are spending too much of our resources taking care of people in crisis. It will take a big investment to get the care out into the community to the extent it needs to be, while maintaining the crisis-care mode." The problem, of course, is that legislators historically have been reluctant to spend money on a state service that most of their constituents do not deem a priority. In late August, Perdue announced a plan to create a new Department of Behavioral Health — although he refused to say whether he thought the new structure would require more money than the state currently spends.
No Honor and Glory
Georgia is hardly alone in its reluctance to fund its mental health system. "There is no honor and glory in this issue, because it is tough, extremely tough," says Virginia Delegate Phillip Hamilton, a Republican who chairs the Health, Welfare and Institutions Committee in the state House and has long paid attention to issues affecting the mentally ill. "When you put the complexity and the public stigma together, it becomes one of those things people don't like to talk about."
Which was, in many ways, the case in Virginia until April 16, 2007. That was the day Seung-Hui Cho, a deeply troubled student at Virginia Tech, killed 27 students, five teachers and himself in a shooting rampage that stunned the country and still reverberates in Virginia. Months before, Cho had been found to be a danger to himself by a special justice and ordered into treatment, but no one checked up on him to make sure he was getting it.
Virginia represents a different case from Georgia. In the 1960s and '70s, it created a structure of 40 community service boards, public agencies charged with providing mental health services to those outside institutions. But it failed to fund the new system adequately. "We never really built the infrastructure up front," says Hamilton, "and we've been playing catch-up ever since."
Even before the Virginia Tech shootings, the state knew it was facing problems, and the legislature had convened a series of commissions over the years to look at various parts of the system. "The bottom line on everything," says Mary Anne Bergeron, executive director of the state's Association of Community Services Boards, "was that community services boards needed more resources to make sure the treatment needs of people with mental illness and substance abuse were met." Those reports did not spark any far-reaching changes, and by the time of Cho's rampage, a new commission, this time chaired by the state's chief justice, was looking into how to improve the increasingly burdened system.
The Virginia Tech tragedy transformed the political discussion. "It changed the mindset of a lot of individuals," says Hamilton, "from where you could count the number of mental health advocates [in the legislature] on one hand, to where this January we had 140 of them. They didn't necessarily know what we needed to do, but they knew we needed to do something."
The result was legislation signed into law this past April — one week before the first anniversary of the shootings — that broadened the standards used to commit someone to treatment involuntarily, mandated the monitoring of people under outpatient-treatment orders, and allocated some $42 million in general funds to implement these changes and to bulk up the resources available to community services boards. Still, this was a far cry from the $460 million that then-Governor Mark Warner warned in 2006 that the state would need to build a sturdy mental health system. Advocates insist that while this year's allocation of less than one-tenth that amount is a step in the right direction, Virginia is hardly done building the system it set out to build three decades ago. "The money," says Mira Signer, executive director of NAMI-Virginia, "is a down payment on many years of neglect. But it's just a start."
For example, Hamilton sees a need for the state to expand its small network of "crisis stabilization centers," which have been effective at helping patients through acute psychiatric crises; only one-third of community services boards, though, have access to one. Signer, for her part, argues that the state also would benefit from finding ways to reduce the need for crisis care in the first place, by focusing on services that help the mentally ill function in the community day-to-day. "These are services like day treatment, job training and placement, home-based services, and above all, housing," she says. "Once you get someone in the system, what will keep them on track and working toward recovery?"
Hallmarks of a Healthy System
The problem is that developing and then maintaining such a full range of services is expensive and difficult, both politically and bureaucratically. The nature of mental illness — challenges with diagnosis, changing approaches to treatment, the simple fact that it erodes a person's ability to process information and make decisions, the varying nature of a patient's needs from one week to the next — does not play to public systems' strengths. "People with mental health challenges have needs that wax and wane over time; you can't just put them in group homes," says Mike Hogan, New York State's commissioner of mental health. "So you need careful coordination across governments and across functions in government, but we've got a political process set up to defeat it. The process doesn't go for amassing power like that."
There are three fundamentals that a healthy system needs, Hogan argues. The first is a relatively localized structure — such as counties or community services boards — that can both coordinate and take responsibility for a patient's care. "This is something that's been by and large forgotten — the array of care is going to be complicated. Somebody has to be responsible," he says. Second, the financing array that now goes into care for the mentally ill — Medicaid, Supplemental Security Income, state and local general funds — has to align with that localized system of care. And finally, those funds have to be adequate enough to do the job and be sustainable over time. "It's not that I want to dismiss program innovation or having the right kind of progressive policy approach, because you have to do those things right, too," says Hogan. "But having a good portfolio of innovations doesn't deliver on these core challenges."
Doing any one of these things is hard, and doing all three is extraordinarily difficult, given each state's peculiar history of intergovernmental relations, the legislative challenges to funding mental health care adequately and the peculiarities introduced by Medicaid rules, which have led some states to design their systems to shift the cost burden to the federal government rather than provide a good continuum of care. Still, it's not impossible. Ohio managed it in the 1980s, under former Democratic Governor Richard Celeste, shifting from a state-hospital-based system to a system coordinated by local mental health boards — and, more important, putting the money that had gone to state hospitals under the control of the local boards. Celeste "was willing to take risks on something new," says Pam Hyde, who was Ohio's mental health commissioner at the time and is now New Mexico's human services secretary. "Closing hospitals and moving toward community-based care was a huge act in the 1980s. It meant being willing to take political grief."
In most states, however, the people in charge of mental health care are left to tinker with systems that no sane person would have designed from scratch. "Through evolution or devolution," says the University of Massachusetts' Jeffrey Geller, "most states now have a state mental health authority, local mental health authorities, nonprofit vendors, general hospitals, law enforcement, the courts, jails and prisons — all dealing with the mentally ill. There's no integration, and there's no single point of accountability."
Creating wholesale change will take political will that, for the most part, hasn't been much in evidence. Although some states — notably New Mexico and Minnesota — are looking at better ways of managing the funding streams that tend to work against coordinating care, and others are focusing on improving their service-delivery systems, it's worth remembering that state mental health programs have a history of backsliding. "The coalitions and the leadership that keep states running well in this area are so fragile," says NAMI's Ken Duckworth. "Especially now. Many people have observed that services did not get better during good economic times. A lot of us are worried about how it will go now that we are in a recession."