Sunday, December 03, 2000

Children with mental problems often have nowhere to turn


Shortage of services forces young patients out of town for care

By Tim Bonfield
The Cincinnati Enquirer

        For Nick Maiorano, the door to Hell opened nearly three years ago when he caught his teen-age son Daniel sneaking beers from the family refrigerator.

        What started as a common family discipline issue quickly worsened as an anguished father watched his oldest son turn to harder drugs, run away from home, crash a family car, threaten to kill people and attempt suicide at least four times.

        Daniel, now 18, had become one of several thousand teens in Greater Cincinnati struggling with the dual afflictions of mental illness and drug addiction. But in a city proud of its image as a great place to raise children, Daniel had to be sent out of town for care - not once, but three times - because he couldn't get the care he needed here.

[photo] In the Maiorano family, brother Nick (left) has no trouble getting cancer treatment, but father Nick (center) has had trouble finding treatment for Daniel, who has had bouts of mental illness.
(Craig Ruttle photo)
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        “I couldn't believe that I had to go to Athens (Ohio) of all places, to get help for Daniel. You would think Cincinnati, the third-biggest city in the state, would have these kinds of services. But they don't,” Mr. Maiorano says.

        Child psychiatrists, consumer groups, pediatricians, social workers and other experts in the field are not surprised. They say America does a lousy job of helping teens with mental illness and substance addiction — and that Greater Cincinnati fares worse than most cities its size. (Where to get help)

        While Tristate children with physical problems can get world-class care here, youths with psychiatric problems run into service shortfalls at many levels. Children wait months to see doctors, hospitals are overwhelmed with crisis calls, and long-term care is almost impossible to find.

        Among the problems:

        • The demand for child psychiatrists far exceeds the supply of doctors, leading to long waits for appointments.

        • The psychiatric floor at Children's Hospital Medical Center has been swamped by a tenfold increase in emergency visits since 1991. For months now, up to 20 patients a day who otherwise would be admitted to the hospital's psychiatric unit are routed instead to regular medical/surgical rooms.

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        • As Children's Hospital runs with waiting lists, other institutions that once served troubled teens have closed or cut back services in recent years.

        “I think (the lack of services) is unusual, given the wealth of community support for other children's issues,” says Dr. Randy Sallee, director of Children's Hospital's division of psychiatry. “At least for (children with mental illness), we don't put our money where our mouth is.”

        Compared with other cities, Cincinnati comes up short in the number of "safe beds" where troubled teens can spend the night under professional care.

        Louisville offers 200 safe beds at hospitals and institutions. Columbus offers more than 180 beds. But there are fewer than 90 such beds in Greater Cincinnati, according to a report released in October by Children's Hospital.

        The Maiorano (pronounced MY-ranno) family has a powerful perspective on the shortage of mental health services here. The family struggled to find care for Daniel, even though his mother, Linda, is a social worker. The family also experienced first hand the wealth of services available for a child with cancer.

        Daniel's younger brother, Chris, now 17, was diagnosed in November 1999 with a rare form of cancer that has left him blind in one eye and fighting for a cure.

TELL US YOUR STORY
    Has a young member of your family struggled to get psychiatric or substance abuse services? What do you think should be done to improve the system?
    Share your stories and ideas with the Enquirer by writing to Tim Bonfield, Enquirer health care reporter, 312 Elm St., Cincinnati 45202; or fax comments to (513) 768-8340; or e-mail to tbonfield@enquirer.com
    Where to get help for troubled youths
        “With Chris, I've got people throwing so much stuff at me it spins my head,” Mr. Maiorano says. “It's mind-bogglingly unfair, the difference between the two.”
       

A fight for help
               This year alone, more than 5,000 teens a year will commit suicide — the unwanted outcome of severe depression and other psychiatric illnesses. Another 2,200 teens will die in drunken driving crashes - the most obvious deadly risk of substance abuse.

        The number of children who will die from mental illness and substance abuse is at least twice the 2,300 children who will die this year of cancer, according to to the American Cancer Society.

        Yet unlike childhood cancer — where local children typically get all the care experts can provide — most kids with mental health and substance abuse problems get no care at all. Those who do often don't get enough.

        An estimated 38 percent of teens with clinical depression get treatment. Counting all forms of mental illness, only 20 percent of sufferers get professional help, according to a White House conference on mental illness.

        Reasons include not having insurance, lack of services and failure to recognize a problem.

        Daniel's dual diagnosis of drug addiction and mental illness has led to 12 psychiatric hospital stays, countless counseling sessions and repeated enrollments in substance abuse programs.

        But the longer-term residential treatment — where patients live in a controlled environment away from home but not in a hospital — that doctors said Daniel needed was not available in Cincinnati. So, Daniel and his family traveled to Athens, Ohio, Columbus and Indianapolis for care.

        The family also had to fight for services with frequent phone calls and letters to bureaucrats. At one point, Daniel's parents filed charges against their own son in hopes of getting treatment available only through the juvenile court system.

        And even though the family's mental health benefits were better than most, their medical coverage for Chris was better.

        “We haven't had to pay a penny of care for Chris. But I'm still paying off bills for Daniel,” Mr. Maiorano says.
       

Nightmare unfolds
               For Daniel, long-simmering problems reached a crisis point in September 1998 with a crash in the night.

        By this time, Daniel was 16 and had been diagnosed with severe depression, bipolar disorder and borderline personality disorder, the inability to control extremely self-destructive behavior.

        His substance abuse had progressed from sneaking beers to smoking pot every day to experimenting with LSD, opium, peyote, heroin and crack. He huffed gasoline fumes in the garage.

        “I started smoking pot when I was 14,” Daniel says. “It was like the '60s, only it was the '90s. I wanted to see what it was like to have a new consciousness.”

        The drugs helped cover up the voices in his head. And to a degree, using drugs made him feel more accepted, at least among other drug users.

        “Up until 10th grade I got treated like a nerd because I was a nerd. I got picked on a lot,” he says. “But you never get rejected by the stoners. They know nobody's better than anybody else.”

        But the drugs didn't come close to making him happy. So on Sept. 11, 1998, Daniel ran away.

        While driving a family car through Indiana, he crashed into a ditch. Stuck, he tried to kill himself by downing 14 pills he was taking to control depression. Found by police at 2 a.m., he was taken to a hospital in Decatur, Ind., where he was given emergency treatment for a drug overdose. Then he was transferred home to the psychiatric unit at Mercy-Franciscan Mount Airy.

        It was the first of four suicide attempts in a two-year span. According to records provided by his parents, Daniel told doctors that for months he had been hearing “voices” or “Satan” telling him to kill himself.

        Daniel's hospital stay lasted 11 days.

        Like many who attempt suicide, Daniel was released as soon as doctors concluded he was stable enough to not be an immediate threat to himself or others. But he was far from cured.
       

Reduction in beds
               Not so long ago, a patient like Daniel might have been committed for months, possibly years, in a psychiatric hospital. But the world of mental health care doesn't work that way anymore.

        Years of declining reimbursement, combined with a general re-evaluation of the benefits of institutional care, have led to a deep reduction in the supply of psychiatric hospital beds.

        Millcreek Psychiatric Center — Cincinnati's state-run psychiatric hospital for children and the last of its kind in Ohio - closed in 1995. Jewish, Christ and University hospitals have closed or cut back inpatient psychiatric units that once admitted teens.

        Mercy Franciscan Hospital in Mount Airy runs a reduced version of services once provided by Emerson A. North Psychiatric Hospital, which closed in 1994.

        And in Northern Kentucky, NorthKey Community Care - known until 1998 as Children's Psychiatric Services of Northern Kentucky - operates fewer than half of its 51 licensed beds, primarily because it lacks funds to run the rest.

        “It is clear that we need more capacity,” says Dr. Michael Sorter, chief of psychiatry at Children's Hospital Medical Center. “We could easily fill another 15 to 20 beds here.”

        Since 1991, psychiatric emergency visits to Children's Hospital have swelled from 200 a year to more than 1,600 in 1999.

        Most of these children are in extreme crisis. They typically come to the emergency department on stretchers and sometimes in handcuffs because they swallowed bottles of pills, slashed their wrists, violently attacked others or were traumatized from being raped or beaten.

        But the shortage of mental health services in Greater Cincinnati goes beyond crisis care.

        Several times a year, Dr. Elizabeth Brown, a pediatrician in Hyde Park, sees children and teens who need psychiatric care for eating disorders, severe depression, psychotic behaviors and other problems.

        Yet when Dr. Brown tries to arrange services, she finds that many area child psychiatrists are booked for months. According to the White House conference on mental health, 8,000 psychiatrists are available for children and adolescents nationwide when 30,000 are needed.

        Intensive residential treatment also is often unavailable, Dr. Brown says. As a result, families have taken her patients as far as Arizona for care.

        Hospital administrators say they share the frustration felt by the Maiorano family.

        “Inpatient services have dwindled over the years,“ says Dr. Edward Muntel, president and chief executive of NorthKey. He says the problem is that insurers won't pay for extended hospital stays.

        When Dr. Muntel started at NorthKey in 1981, the average stay for a disturbed child was 140 days. This year, the average is about 14 days.
       

The Columbine effect
               For the Maioranos, Daniel's nightmare took an ominous turn in April 1999. Daniel had run away again. In searching his room for clues about where he had gone, his parents found a handwritten notebook scrawled just days after the Columbine High School shootings that left 12 students, a teacher and the two gun-wielding attackers dead in Colorado.

        Daniel called it “My journal of illegal activities.”

        “Those loosers (sic) in the "Trenchcoat Mafia' fed right into my hands, but they also had their own interests in mind. They killed minorities in specific; that's fine, but it sends the wrong message; my message was "no one's safe.' ...

        “I want to hit a small town in Indiana; not a school, though, a police station.”

        Daniel's parents were mortified when they found the diary.

        “Daniel had claimed he actually talked with the Columbine guys before it happened. So we called the sheriff. They took the computer but couldn't confirm anything. But now we were really scared,” Mr. Maiorano says.

        Heightened sensitivity to potential violence in schools has contributed to the recent increases in psychiatric visits to Children's Hospital, Dr. Sorter says. School nurses, administrators, police and parents are more serious about events that once were dismissed as pranks.

        But while an increase in referrals means that more troubled youth are being detected and treated, the referrals also expose and aggravate a citywide lack of capacity, Dr. Sorter says.

        For Daniel, this incident got the juvenile court system involved. As part of a court order, he was sent to Athens, Ohio, and then to Columbus for residential substance abuse treatment.

        “I don't even remember what I wrote,” Daniel says.

        The services, neither of which was offered in Cincinnati, helped Daniel control his addictions for several months. But stability didn't last.
       

Disparity in service
              

        In November 1999, Chris Maiorano was diagnosed with rhabdomyosarcoma, an uncommon tumor that had filled his sinus cavity, pinched the optic nerve in his left eye and eroded part of his eye socket.

        Two weeks into a flurry of treatment for Chris, Daniel attempted suicide again by overdosing on pain medications prescribed to his younger brother.

        “Daniel used to say he should be the one to die, not Chris,” Mr. Maiorano says.

        Chris received radiation and chemotherapy to shrink the tumor enough to allow surgery to remove the rest. He was miserable for months.

        Now, Chris has nearly completed follow-up chemotherapy and doctors are "cautiously optimistic.” His hair is growing back, and he has returned to class as a senior at Oak Hills.

        It will take about five years before the family can say Chris has been cured, but unlike Daniel's case, the progress has been measurable and somewhat consistent.

        “It's so much easier to deal with something physical. But with Daniel, it's all inside his head,” Mr. Maiorano says. “He looks like he's getting better, then all the sudden, the wheels come off.”
       

Dual ailments
              

        Daniel is one of thousands of children who have had trouble getting care for a combination of psychiatric and addiction problems.

        “For so long, mental health and substance abuse were treated separately. If you had both problems, you could only be treated for one or the other,” says Janice Bogner, program officer for severe mental illness for the Health Foundation of Greater Cincinnati.

        “Now, there is a move to integrate treatment. But it's just beginning,” she says.

        Much like the cutbacks in mental health care, experts in substance abuse care say month-long stays for detoxification and in-depth counseling have given way to short-term detox stays and outpatient counseling.

        Many insurers also put lifetime caps on how many sessions they will cover or how much money they will spend on addiction treatment.

        “The country as a whole is looking at this issue of substance abuse and mental illness and saying, "Wait a minute, we need to do something different here,' ” says Ann Perrin, program officer for substance abuse at the Greater Cincinnati Health Foundation.

        The Health Foundation is the biggest, newest Tristate player in the field of substance abuse and mental health. The situations encountered by families like the Maioranos are why the foundation selected mental health and substance abuse as two of its four focus areas, Ms. Perrin says.

        One of the foundation's findings, she says, is that “everybody (in Greater Cincinnati) was sending kids who need residential care someplace else.”

        Dr. Brown says services for troubled teens will get better once society quits trying to sweep mental health issues under the rug.

        “In the end it's about attitude,” she says. “Mental illness is a thing that our society still does not understand. Too many people think you can will yourself into being sane. But you can't.”
       

- Children with mental problems often have nowhere to turn
For Daniel, 'the bottom would drop out'
Where to get help for troubled youths
       



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