Boarder patrol

Mental-health services for troubled children are so bad in Massachusetts that ER physicians and pediatricians have started speaking out. Will their attention push the state to commit the needed resources?

by Kristen Lombardi

IN MANY WAYS, Barbara Fleishman knew it was coming. For days, the Metrowest mother of three had noticed that her teenage son, who suffers from bipolar disorder, an illness characterized by wild mood swings, was growing more and more irritable. He got angry if his medication caused nagging side effects, if his mother cut his requests short with "No," if his siblings glanced at him the wrong way.

"Everything was bothering him,"
recalls Fleishman, who asked that her hometown and real name not be published to protect the privacy of her children.

But when she received a call informing her that her son had been rushed to the emergency department at Metrowest Medical Center in Framingham after a frightening outburst at school -- during which he threw a chair at a counselor, punched a hole in the wall, and then fled -- Fleishman couldn't contain her distress. "I knew," she says, "the ER meant it was going to be a long haul."

Indeed. By the time a psychiatric evaluator arrived at the hospital, Fleishman and her son had spent more than six hours in a tiny, austere room featuring a gurney, splashes of dried blood, and a security guard who shielded the door. Although the evaluator decided the boy needed hospitalization, there were no open beds. And so Fleishman was sent home with her son and some extra medication.

"It's the waiting game," she says with a sigh. "It's a disgrace."

The waiting game, as Fleishman wryly puts it, is nothing new for parents whose children have mental, emotional, or behavioral problems. Overbooked hospital psychiatric units for youths under 18 first made headlines in June 1999, when newspapers got hold of a memorandum by Marylou Sudders, commissioner of the Massachusetts Department of Mental Health (DMH), in which she warned that the demand for acute psychiatric beds had reached "near crisis proportions." Just last month, a Boston Globe article reported that little has changed when it comes to the profound need for beds and a host of other problems plaguing the fractious, multi-level state mental-health system.

What has changed in the past year, however, is that pediatricians and ER physicians are sounding the alarm over what they call the "collapsing" and "broken" network for treating the state's most vulnerable, least visible children. Though these doctors are no strangers to advocacy, they've taken the unusual step of criticizing a system outside their domain, thereby forming new alliances with parents, patient advocates, and mental-health workers who have long fought to improve mental-health care. For the doctors, their action isn't simply a matter of professional duty to sick kids; it's also a matter of necessity. After all, an unparalleled number of the approximately 69,000 Massachusetts youngsters with mental disorders keep appearing by default before them.

According to the US Center for Mental Health Services, about 20 percent of American youth now require mental-health services: five percent of those have a condition serious enough to handicap them. And more and more troubled kids -- kids who beat their siblings, threaten parents with knives, and strangle family pets -- are winding up in hospital emergency and pediatric departments. Once there, they tend to wait for hours, often more than a day, for an available bed in a psychiatric ward. Mark Pearlmutter, who heads emergency services at St. Elizabeth's Hospital in Brighton, says, "When you come into ER the next day and see the same child, you know there's a major problem."

All this inspires a sense of urgency among ER doctors, who have come to realize what those in the mental-health community have long known: tragic things can happen when troubled kids are ignored. Without proper treatment, such children may end up committing crimes, falling into drug abuse, and perhaps even passing on their problems to another generation. In the words of Walter Harrison, a pediatrician at the Salem-based North Shore Medical Center: "The situation is scary. I don't want to see another Columbine in Massachusetts."

IN THE mid 1990s, pediatricians and ER physicians began to notice a steady stream of children with mental, emotional, and behavioral problems -- some of them as young as three -- among all those with gashes, broken bones, and infectious diseases that doctors were used to treating. Children have been so disturbed that they've put their pets in microwaves, pushed their mothers down staircases, or cut themselves with glass shards.

Since 1996, for example, Boston Medical Center has seen a 55 percent increase in the number of such children; 60 or so child psychiatric patients per month appear today. Most remain in the pediatric emergency department long after other patients have left. And half of them are then transported to the general pediatric ward, where they will wait as many as 10 days for an open bed in a psychiatric hospital.

The increase in the number of "boarders," as these children in limbo are called, prompted BMC pediatrician Joshua Sharfstein to take a closer look. Sharfstein discovered that from January to May 1999, one-third of the 167 child psychiatric patients arriving at BMC had to be admitted to its pediatric floor. He then tracked 10 children -- including teenagers who had choked their mothers, swallowed too many diet pills, or warned relatives of a desire to kill. Not only did these teens linger in the pediatric ward for up to three days, but they didn't receive the critical services that psychiatric hospitals would provide, such as group therapy, psychological testing, and behavioral planning.

The Sharfstein study, presented in May at a national conference for pediatricians in Boston, marks the first effort to quantify what anecdotal evidence has made clear in virtually every hospital in the state. Pat O'Malley, who heads Mass General's pediatric emergency department, finds many child psychiatric cases far more "heartbreaking" than even the bloodiest gunshot wound. She still remembers the time a three-year-old boy arrived at the ER after setting fire to his mother's couch. It was soon discovered that the child, who suffered minor burns, had developed a fire fixation after sexual abuse at the hands of an older boy. The three-year-old languished in the ER for nearly 24 hours before being hospitalized.

"He was a reasonably distressing case," O'Malley recalls, "and just one of the children caught in the medical loop."

This problem extends beyond Massachusetts as well. Karen Santucci, who directs the pediatric emergency department at Yale-New Haven Children's Hospital in Connecticut, was stunned to learn that the number of troubled youths appearing at the ER there has soared 59 percent since 1995 -- far exceeding the increase in children with such diagnoses as cancer, diabetes, and even the urban scourge, asthma. "I thought that was pretty staggering," she says.

But the situation became even more staggering this past April, when Santucci found herself trying to resuscitate a physically healthy 11-year-old boy who had been depressed enough to hang himself. That Santucci could not save the boy -- a husky kid with a mouth full of braces and a lifetime ahead of him -- has left an indelible impression. "There is a sense of helplessness," she says, "and we are banging our heads over it."

Even when troubled children are saved, the consequences of boarding them can be grave. These youngsters must displace others in the pediatric ward -- children with chronic diseases such as leukemia. That, in turn, disrupts routine hospital operations and stretches staff resources. Child psychiatric patients then find themselves in inappropriate settings with pediatricians who may be adept at treating physical ailments, but not mental illnesses. Most are watched round-the-clock by guards to prevent escape and self-inflicted injury; sometimes, especially violent kids are restrained.

The situation, in short, is a recipe for bad health care. As Karen Norberg, a child psychiatrist at BMC, explains, "We are postponing help for these children." And by delaying treatment, she adds, "you lose a certain momentum, a certain opportunity."

Still, pediatric floors, however unsuitable, are at least safe, comfortable places in which to house child psychiatric patients. Emergency rooms, on the other hand, offer a grim environment. Harried providers rush around tending to people who've fallen out of trees, crashed cars, or suffered seizures. The cacophony of sirens and shouts rarely fades. "These children witness things that would never happen in a psychiatric facility," says Fred Stoddard, a child psychiatrist at Mass General. "This exposure can trigger their own traumas."

Sigmund Kharasch, the medical director of BMC's pediatric emergency department, cannot forget the time an eight-year-old boy showed up at the ER with such severe depression that he'd stopped eating. Waiting for a psychiatric bed, the boy watched while a near-dead baby was brought into the ER. Kharasch and colleagues tried to resuscitate the baby, to no avail. "In full view of the boy," he recalls, "family members started crying." The grief-filled scene led the boy to sob and lash out so uncontrollably that he had to be tied down.

Such situations have left pediatricians deeply frustrated because they cannot do the very thing that doctors are supposed to do: treat patients. "Here," Kharasch says, "our hands are tied with these children. We cannot help them."

In the face of what one pediatrician calls this "overwhelming and scary" trend, doctors have called public attention to the Sharfstein study, among others. They have reached out to state officials through forums and letters. Robert Vinci, the vice-chair of pediatrics at BMC, says that pediatricians across the city are now committing to a fight.

"Someone has to wake up and recognize that we're doing these kids a disservice," Vinci says. "We're trying to make noise and do what we can to advocate for change."

THE BOARDER trend that's prompted some pediatricians and ER physicians to speak out may be especially disruptive to them, but it is just one of many problems in caring for mentally ill children. There are the lengthy wait lists -- some with hundreds of names on them -- for even basic things like case-management services. Strains in services are manifested when kids, like Fleishman's son, are simply sent home with medication. Or when they're placed in facilities outside the state, in psychiatric hospitals as far away as New York or Pennsylvania.

"It all represents the same problem," says Lisa Lambert of the Parents Professional Advocacy League (PAL), an advocacy group concerned with children's mental health. "The logjam is repeated every step of the way."

Perhaps the most tragic sign of the failed system is rooted in woefully insufficient "aftercare" services. David Mattioto, who heads the Massachusetts Association of Behavioral Health Systems (MABHS), which represents 28 psychiatric hospitals across the state, estimates that 50 to 70 youngsters who require acute care are denied help daily because an equal number of youngsters are "stuck" in short-term hospitals. The "stuck kids," many of whom are in the custody of the state Department of Social Services, have stabilized and are ready to move into long-term programs, such as residential treatment centers or foster homes.

"But there is nowhere for the stuck kids to go," Mattioto says. Take the case of one 10-year-old girl with psychosis, who could have been discharged from a short-term facility last August. Instead, she's languished in a locked mental ward all this time because there are no available aftercare placements. An eight-year-old girl with bipolar disorder has remained in the inpatient unit she first entered eight months ago, although psychiatrists tried to release her earlier this year. The bleak scenarios are confirmed by state statistics, which report that 82 kids were "stuck" as of last May -- compared to 16 kids in May 1998.

According to Northeastern University professor David Rochefort, who has researched mental-health care in Massachusetts, such events would not occur if the larger system were providing a "continuum of care," ranging from school-based interventions to outpatient programs to acute hospitals to residential homes. The fact that children fall through the cracks proves, as Rochefort says, that "the continuum is not comprehensive or of good quality."

TO BE sure, Massachusetts isn't the only state lacking a comprehensive network to treat mentally ill children. Ever since Santucci of Yale-New Haven Children's Hospital published data on the boarder trend this year, she's received calls from pediatricians in Maine, Vermont, New York, Florida, and Minnesota, all of whom say they've seen sharp increases in the numbers of child psychiatric patients.

"This," Santucci says, "is a national epidemic."

And it's an epidemic with no easy explanation, though societal factors, such as the breakdown of families and the stresses of an ever-changing world, have surely contributed. In the wake of high-profile school shootings, experts say, adults have grown quick to spot possible signs of instability in young people. And even though psychiatrists know how to treat kids, there just aren't enough resources to do so. "It's especially sad," Mass General's Stoddard laments. "We have more treatments available but cannot provide them at the scale we need to."

But although the crisis in Massachusetts reflects a national pattern, it seems to be especially acute here. More children show up in the ERs here than elsewhere; they wait for services longer; they get stuck more often. Lambert has surveyed mental-health services nationwide and is convinced, she says, that "other states don't have the severity of problems."

The plight of stuck kids, in particular, has seemed dire enough to prompt unprecedented action. Last summer, the Massachusetts Psychiatric Society convened a first-ever statewide task force on child mental health, which consists of psychiatrists, social workers, state officials, and pediatricians. The group is now scrutinizing the systemic problems to muster consensus about solutions. At the urging of the state DMH, meanwhile, the Massachusetts Behavioral Health Partnership, a private company contracted by the state to manage $240 million per year in mental-health care for Medicaid beneficiaries, has increased acute psychiatric beds by 43 percent since April 1999, making for a total of 505 today.

Despite this attention, problems persist. "People feel like they're fighting an uphill battle," admits Karen Hacker, director of child and adolescent health for the Boston Public Health Commission. Things may not be at an all-time low, but, she says, "we are close to being at a place where we don't want to be."

The reasons things are so messed up in Massachusetts appear as complicated as the problems themselves. The mental-health system is a highly fragmented network that includes the state DMH as well as other youth-related agencies and community-based providers. Fragmentation makes it tough to address sweeping issues. Lambert, who sits on the psychiatric society's coalition, says, "You can fix one part of the system, but then have the rest of it to deal with."

Also, as Rochefort observes, mental-health care has remained "chronically underfunded." And this perpetual lack of investment has only intensified in an age of managed care and cost pressures. Though the price of medical care has climbed, reimbursement rates have stayed the same for eight years, leading to what's been described as "poor" compensation by private and public insurers. Inadequate reimbursements have forced both inpatient and outpatient programs to shut down statewide. Last April, for instance, Children's Hospital, which has one of the few inpatient psychiatric units left, threatened to close the unit in the face of sustained financial losses. Recently, the hospital announced it would cut all departments by 15 percent to compensate for the deficit.

Other programs for mentally ill children have disappeared altogether. There was the 1993 closing of the state-owned psychiatric hospital for children, the Gaebler Children's Center, followed by closings of dozens of state-operated treatment centers. Residential programs, in addition, have limited their availability by accepting out-of-state youngsters to fill 900 of the state's 3000 long-term beds -- partly because insurance rates elsewhere are higher, and partly because states such as Maine and New Hampshire have come to rely on Massachusetts for such services.

Dwindling resources are made even tighter by demographics. Massachusetts experienced something of a baby boom recently, which has boosted the adolescent population by 24 percent. More kids, naturally, means more kids with mental problems. The supply has yet to catch up with demand. And it's questionable whether the two can be matched, since the money spent on mental-health services nationwide has dropped 54 percent in 10 years. One national study reports that fewer than one-fifth of mentally ill youngsters get any treatment -- which, observers say, is a "travesty" that the general public tolerates.

Says Lambert: "The crisis reflects the stigma around mental illness. If a child needed dialysis or chemotherapy, it would never be all right for the child to wait."

IT WOULD be unfair to paint state officials -- at least, those at the DMH -- as indifferent to the sorry state of mental-health care for youth. "As commissioner," says DMH head Marylou Sudders, "I do not want a crisis." Since last year, in fact, she and her staff have joined with advocacy groups such as PAL and MABHS to press for some immediate solutions in an effort to calm the storm.

First, they've successfully lobbied politicians for a $10 million fiscal-year 2001 budget item that allows for the opening of 80 new beds at residential homes across the state, thus moving more stuck kids into aftercare. Second, the DMH and advocates have pushed for the "mental-health-care parity bill," as it's known, which mandates that insurers offer equal coverage for mental and physical illnesses. Signed into law this year, the legislation is expected to help close the gap between service costs and insurance reimbursements to hospitals.

But even Sudders admits that these efforts amount to only a quick fix. (Though money has been approved for 80 beds, there is only enough staff to open 56 of them.) State officials, patient advocates, and mental-health workers agree that to solve the long-standing problems, the so-called continuum must be improved. That means offering better prevention services so that troubled children don't have to resort to emergency rooms. It means increasing staff size and clinical capacity at aftercare facilities. And it means improving coordination among state agencies, insurers, and providers. What is needed, in short, is a massive influx of funds and resources -- a shift in budget priorities -- to allow for the build-out of what Sudders calls "the front-door and back-door services."

It's a level of change that demands work, for sure. Until now, the political will to carry out long-term solutions has been almost nonexistent. As Mattioto, who has lobbied to fix the mental-health system's gridlock for two years, attests, "Public officials have pushed these larger problems to the back burner. The urgency isn't there."

Though it's true that legislators and Governor Paul Cellucci responded to the crisis by supporting the $10 million budget item, not everyone is convinced that those who hold the state's purse strings view mental health as a spending priority. Cellucci, in particular, can be accused of sending mixed signals. For nearly two years, PAL flooded his office with 600 letters detailing the plight of stuck kids before he approved funds for more beds. And it's widely believed his proposed tax-cut ballot initiative would gut existing human services. "Passing that tax cut would devastate the mental-health system," says Stoddard, who is also president of the Massachusetts Psychiatric Society.

Spurred on by an uncertain political climate, the psychiatric society's task force has reached out to state legislators such as Representative Kevin Fitzgerald (D-Mission Hill), who heads a caucus on children's issues. Fitzgerald says that his assembly, as well as a mental-health caucus led by Representative Kay Khan (D-Newton), plans to gather information and examine the situation in hopes of proposing how to manage the system better. "These problems aren't going away," he says, "and I'm committed to waking up other legislators."

This type of commitment is what's required for ultimate success. Problems in children's mental-health care have persisted in part because no one has managed to keep them in the spotlight and thus force the public to recognize the issue. Sudders, who has neither a timeline nor a price tag for long-term solutions, explains, "To have change, you first need an organized and broad-based coalition."

Which is exactly why those in mental health welcome the latest developments among doctors. There's no question that the pediatric push represents a step toward a unified voice, one that may be more effective at galvanizing the community at large. As a lobby, pediatricians have influenced policy; most recently, they pressed for medical services to be funded by the state tobacco tax and for new vaccinations. Lauren Smith, who directs inpatient pediatric services at BMC, says, "We tend to be able to get people's ears and to give credibility to issues."

Now that they've enlisted in the battle to restore mental-health services to the state's most vulnerable children, they could be the very thing needed to help capture public attention and thus effect change.

After all, as one state official, says, "Until people outside of the mental-health community stand up and say, `This is not acceptable,' things will probably stay the same."

Kristen Lombardi can be reached at klombardi[a]phx.com..