How Parents Cope with a Lack of Support, Insurance and Understanding
By Anne Chappell Belden
Samantha Waters’* son Brad was in third grade when he first told her that he wanted to die. He said he was going to get up in the middle of the night and stab a knife through his heart.
“It was so out of the blue,” says Waters. “He acted so normal, like he was always having a good time.”
Waters notified the school and took Brad to a therapist; he seemed to improve. But in sixth grade, with the added social and academic pressures of middle school, Brad’s talk of dying intensified. Though he was a smart kid with plenty of friends, he told his mother that he was stupid, worthless and didn’t like himself.
Usually, the episodes came at night. Waters tried to protect her son by watching him around the clock. At one point, she slept on his bedroom floor. “I would watch him breathe all night,” she says.
“The worst was when he was asking, begging, pleading, demanding for me to kill him. I told him, ‘No, I can’t do that. I love you too much.’ He wouldn’t even believe that I loved him.”
*Names of the children who have struggled with mental health issues and their parents who we interviewed for this article have been changed to protect the families’ privacy.
A psychiatrist diagnosed Brad with depression stemming from a chemical imbalance. The diagnosis and subsequent treatment is not unusual for a child. In fact,an estimated one in 10 children and adolescents in the United States suffers from a mental illness severe enough to significantly interfere with daily life.
Cases of depression, bipolar disorder and anxiety disorders are increasingly common in kids, according to mental health experts. It’s not clear whether more children are actually suffering from mental illness, whether improved diagnosis and parental awareness have resulted in more cases, or both. One thing is certain, however. As mentally ill children and their families seek help, they must wade through a mental health system that is “in shambles,” according to a 2003 presidential commission. Now, two years later, the system isn’t much better. Among the biggest problems:
• Mental health services are fragmented, made up of a “patchwork” of disjointed institutions and inconsistent laws.
• A shortage of care facilities and child and adolescent psychiatrists makes finding qualified help difficult. While estimates put the number of mentally ill children in the United States at 6 million, there are only about 7,400 child and adolescent psychiatrists. Rural areas are particularly hard hit by this shortage.
• Mental illness generally does not get the same health insurance coverage as physical illness. Parents of mentally ill children often pay out-of-pocket for services their kids desperately need.
It isn’t that people aren’t paying attention. Children’s mental health problems are acknowledged by some pretty heavy-hitters:
“The burden of suffering by children with mental health needs and their families has created a health crisis in this country,” former U.S. Surgeon General David Satcher reported in his 2001 National Action Agenda on Children’s Mental Health.
“Every child deserves a good start in life,” says former First Lady Rosalynn Carter, founder of The Carter Center Mental Health Program, which aims to raise awareness and reduce the stigma of mental health, make mental health care equitable with other health care and help foster prevention and early intervention services for kids and their families.
“We know so much more about the brain and effective treatments than we did even a decade ago,” Carter says.“There is mounting evidence that the trajectory of a child’s life can be altered considerably in a positive way when treatment is provided as early as possible.”
Yet, about 70 percent of children with mental illness go untreated, she says, and their futures are uncertain. Mentally ill children have much higher rates of school failure, family conflicts, drug abuse, violence and suicide.
Children and teens who do receive treatment often endure incorrect diagnoses and numerous changes in medication and therapists. Complicating treatment further, last fall the U.S. Food and Drug Administration issued a “black box” warning (the agency’s most serious labeling of a medicine and its potential risks) that antidepressants could cause suicidal thoughts and behaviors in teens.
Could Your Child Have a Mental Illness?
Every child is sad, fearful, anxious or moody some of the time. How can parents differentiate between what’s normal and what could actually be a mental disorder?
Child psychiatrists advise parents to look for a pattern of behavior. A child who is often irritable or sad – not just after a loss or sad event – may be clinically depressed. A child who is often anxious or worries so much that it interferes with daily life may have an anxiety disorder. And a child whose moods swing to extremes – from elation to depression – could be bipolar.
But diagnosing mental illnesses in children can be difficult; symptoms and even disorders can overlap, child psychiatrists say. Here’s a closer look at the mental disorders commonly seen in children today:
The most common of the mental, emotional and behavioral problems in children. They include separation anxiety, generalized anxiety and social phobias. About 13 out of every 100 children and adolescents, ages 9 to 17, experience some kind of anxiety disorder, with girls more affected than boys, according to the surgeon general’s 2001 report.
• Separation Anxiety Disorder – Most kids show normal signs of separation anxiety, such as when their parents leave or when children start a new school. For about one in 25 children, however, separation anxiety becomes a disorder when the parents can’t leave, says Shannon Barnett, M.D., an assistant professor of child and adolescent psychiatry at Johns Hopkins University.
“The parents are really held hostage by the illness. They can’t go to the bathroom; the child follows them. They can’t get them to school; the kids will complain of stomachaches so they can call home,” Barnett says. “Those kids won’t go to a friend’s house or play sports because they can’t be separated from their parents even to do fun things.”
• Generalized Anxiety Disorder (GAD) – Typically occurs between ages 10 and 12. Kids with GAD worry about everything: finances, schoolwork (even if they are getting A’s), storms and natural disasters. “If they see a storm on the news, they think about it for a long period of time,” Barnett says.
• Social Phobias – As children become teenagers, social phobias tend to strike those who may be shy or have low self-esteem. These teens often cannot eat in front of others, do presentations in class or change clothes for gym in front of others.
“They are really worried about what other people think. They don’t want to go to a party or the mall, things other teens do,” Barnett says. “They are so sure people are thinking bad things about them.”
• Obsessive-Compulsive Disorder (OCD) – A combination of intrusive thoughts and compulsive behaviors. Kids may become obsessive about germs or neatness, and do compulsive acts, such as repeated counting, hand-washing or checking over and over again to see if a door is closed.
Donna Wilde’s* son Anthony was a shy freshman in high school and having a rough time socially when he began to wash his hands for up to a half-hour at a time and take 40-minute showers. In his sophomore year, he made a few friends, and his symptoms seemed to diminish. But then Wilde uprooted Anthony and moved out of state.
“That seemed to be the downfall, what he couldn’t get past,” she says. Not only did his OCD symptoms increase, Anthony grew depressed. “He didn’t leave his room,” Wilde says. Therapy and four different medications have not yet helped his OCD, but his depression has improved.
About half of children and adolescents with anxiety disorders have a second mental disorder, such as depression.
An estimated 3.4 million American children and adolescents have clinical depression, and those numbers are on the rise, says child psychiatrist Graham Emslie, M.D. Emslie, an internationally known researcher on the use of medicine and psychotherapy for children and adolescents with depression, attributes the increase to two factors:
• kids live with more stress and less extended family support today, and
• they are starting to suffer from depression at younger ages.
Depression also has a genetic component; about half of the children diagnosed have a parent or sibling with the illness. Most at risk for depression are kids who are abused, neglected or experience traumas such as divorce or loss.
Depression rates increase in adolescence, with one out of eight teens affected. Until adolescence, boys and girls have equal rates of depression. After middle school, however, the rate doubles for girls. But, while five teenage girls attempt suicide for every one boy who tries, five boys actually succeed in killing themselves for every one girl who does, Emslie says.
Along with signs of persistent sadness and irritability, parents should also be concerned if their child’s grades start to fall, or if she has trouble concentrating or withdraws from friends or activities. Changes in eating or sleeping and talk of death or suicide are also indicators, Barnett says.
Brad Waters’ talk of suicide turned into action in sixth grade. One day after a bike ride, he rushed inside, climbed up on the kitchen counter and grabbed a knife from the cupboard. His sister was the first to notice.
“‘Mom, he’s got a knife,’ she said. So I went over there and had to pull it out of his hands,” his mother recalls. Brad said he acted out because he wanted to change his medication.
Heartbreak caused Brad to battle depression again in seventh grade. “He takes rejection very personally. He’ll think about it so hard and deep, as sad as sad can go. Or as destructive,” his mom says. “It’s self-mutilation of the mind.”
Now 13 and in eighth grade, Brad ran away in September for about five hours after a confrontational therapy session. Just before Thanksgiving, he was admitted to the hospital after taking four days’ dosage of his medication all at once. He told his mother he wanted to die, and if the extra medication didn’t kill him, at least it might make him happy.
Bipolar (Manic-Depressive) Disorder
Cases in children have increased dramatically in the past decade, primarily because doctors previously didn’t think this largely hereditary disorder affected kids. Bipolar kids were often misdiagnosed with attention deficit/hyperactivity disorder (AD/HD).
As with depression, bipolar children experience extreme sadness, irritability and hopelessness. But their moods also swing to extreme elation, silliness and hyperactivity. Minor incidences can set off big reactions that take a long time for them to recover from, Barnett says.
Sharon Goldstein* and Ruth Wood* have witnessed hundreds of severe mood swings over the years with their son, Max, who showed symptoms of bipolar disorder even as a toddler. “If he played in the sandbox, he might play nice for 15 minutes and then pick up the toy truck and slam it over the head of another kid,” Goldstein says. “Other kids might do that once. We experienced it 100 percent of the time. He couldn’t be in a play group.”
Nor could he be left alone at any moment, even when he slept. During naptimes, Max would take his diaper off and spread feces on the wall. “That’s something other kids will do once or twice. Max did it a couple times a week for a year,” Goldstein says.
The illness was worse at night, when night terrors invaded Max’s sleep. Goldstein says when most people dream, they wake up before something terrible happens, like being attacked by a bear or falling off a cliff. Max’s brain, however, doesn’t wake him up. “So he experiences being eaten and going off a cliff.”
Goldstein and Wood first took Max to a therapist after his preschool teacher said he was taking too much attention. The therapist said there was nothing wrong. Yet Max, at age 3 or 4, told his parents he wanted to die. “He was suicidal before he knew what suicide was,” Goldstein says.
When he started kindergarten, Max ended up in the principal’s office daily. He hit other children, talked back to the teacher and couldn’t sit still. Six weeks into the school year, Goldstein and Wood pulled Max out of school after they witnessed him yanking out his hair.
Goldstein spent 10 to 12 hours on the phone getting referrals for the best therapist, who diagnosed Max as severely bipolar. He was 5. “That was the first validation we had that something was wrong,” she says.
Over the years, they’ve endured bad therapists, lost friends and relatives who assumed they were terrible parents, felt ashamed and tried to hide Max’s illness. On a typical day, after playing nicely for half an hour, Max might start hitting Goldstein, throwing things at her, and pulling out her earrings.
“I think he’s broken 10 pairs of glasses,” she says. She would hold him until he cried and fell asleep. “Then I would cry,” she says.
Wood and Goldstein have learned to handle Max’s mental illness by keeping him on a rigid schedule. “We can’t let him get tired. We can’t let him get hungry,” Goldstein says.
Eventually, their “bad parenting” shame was overruled by psychiatrists and therapists who praised their parenting skills.
Over the years, Max has tried 30 to 35 different combinations of medicines – each change difficult and disruptive. They’ve tried holistic methods, diets and vitamins, and have taken Max to more than a dozen therapists and psychiatrists.
“He has made significant progress,” Goldstein says. “He has worked so hard to be in a normal range of behavior.”
The family has spent $10,000 a year on medication and doctors’ bills. Despite recent improvements in coverage, their insurance pays just one-third of the $150-per-visit bill.
A Broken System
Max’s family’s struggle illustrates the fractured mental health system that frustrates parents seeking help.
Access to care is perhaps the greatest problem, says Alvin Poussaint, M.D., a noted professor of psychiatry at Harvard University. Many inpatient and outpatient services for children have closed due to financial hardship, in part because children often need more comprehensive – and expensive – care, with someone working with parents and the school. Meanwhile, any insurance reimbursements are often small.
“It’s not a money-making operation. It costs to treat children properly and comprehensively,” Poussaint says. “You can’t just bring them in and do one-on-one therapy and send them out.”
The shortage of child psychiatrists makes matters worse, he adds. “They are in demand all over. Most are too busy to provide additional services.”
Adding to the strain are inequities in insurance coverage. “It’s much harder to collect from the insurance companies for mental health,” Poussaint says. “The big problem is reimbursing at an adequate rate.”
Services for children need to be publicly subsidized or else the insurance industry must be made more responsive to mental health needs, he says.
But Blue Cross spokesman Michael Chee disagrees and says the issue is extremely complex. Most Americans with health insurance receive it through their employers, and it’s the employers who make the choices, he says. “The people who pay the bill are the people who get to choose what is covered or not covered.”
For people who pay for their own insurance, policies vary dramatically from state to state depending on the insurance company, local market conditions and state regulations and laws, Chee says.
At least 33 states have a mental health parity law requiring insurance policies to carry a minimum defined level of mental health benefits. Legislation before Congress, the Senator Paul Wellstone Mental Health Equitable Treatment Act, would require insurance companies to provide coverage for mental illnesses equal to that for other illnesses.
“Passing this legislation would prevent more suffering than anything else we could possibly do,” former First Lady Carter says. “I also believe it would help overcome the stigma.”
Even if such legislation passes, Chee says the real problem is there are so few facilities and child psychiatrists, it is difficult for insurance companies to get contracts with them. “In certain areas, there may not be any to contract with,” he says.
Though the Waters live in a city with more than one million people, the nearest psychiatric hospitals that treat children are an hour or more away. But Samantha Waters considers her family fortunate. Her health insurance plan paid for four hospital visits, including ambulance rides, medication (eight changes so far) and hundreds of hours of therapy, with only $10 co-pays.
Advice from the Trenches
The parents and experts we interviewed agree that getting the best help – which may entail multiple referrals and meetings with several professionals – is critical. Parents say they’ve also needed their own therapy to learn to cope.
Rosalynn Carter says parents should become informed about advances in treatment.
“Mental illnesses can be diagnosed, effective treatments are available, and recovery is possible,” she says. “There’s no question, though, that accessing appropriate treatments can be challenging – but don’t give up! Parents must become advocates for their children.”
For Waters, the lessons boil down to love. “If I could have taught my son self-love, I think I could have prevented a whole lot,” she says.
Indeed, Brad’s depression has taken a toll on the whole family. Waters finds herself depressed after each episode and she and her husband have sought counseling to learn how to co-parent better.
Brad’s younger sister has also suffered. She is terrified that her brother’s going to die, and has been “almost neglected” at times, her mother says.
Brad now takes Prozac and attends group and individual therapy sessions each week. His doctors say the medication will help his brain develop healthy thought patterns.
In the meantime, his mother tries to cope as best she can. “I try to give him love and support every day,” she says. Yet every day, she must live with her greatest fear, “that he’ll get brave enough to do it.”
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Anne Chappell Belden is a journalism instructor and award-winning freelance writer.
From United Parenting Publications