published Sunday, December 30th, 2012

Shooting sparks conversation about mental illness, violence

A police officer leads two women and a child away from the shooting scene at Sandy Hook Elementary School in Newtown, Conn., on Dec. 14.
A police officer leads two women and a child away from the shooting scene at Sandy Hook Elementary School in Newtown, Conn., on Dec. 14.
Photo by Associated Press /Chattanooga Times Free Press.

RESOURCES FOR CHILDREN AND ADOLESCENTS

National Alliance for Mental Illness in Chattanooga

Contact Sylvia Phillips, president, at 827-4049 or phillips@epbfi.com.

Upcoming NAMI Chattanooga Events:

* Jan. 8: Support Group Meeting Wally's in East Ridge, 11:30 a.m. to 1 p.m.

* Jan. 20: Evening meeting Johnson Mental Health Center, 420 Bell Ave., 6:30 to 8:30 p.m.

Parkridge Valley Hospital

Call RESPOND 24 hours a day for referral, intervention, information and assessment in a crisis situation at 499-2300. Valley offers outpatient programs for substance abuse, the children's acute program, adolescent acute program, subacute residential program and partial hospitalization program for children and adolescents. For more information go to parkridgevalley.com.

Fortwood Centers Inc.

Fortwood offers a children's and adolescent program and parent classes at 6055 Shallowford Road. It accepts TennCare, Medicare and other insurance. Arrangements are made for the uninsured. Fortwood is partially funded by the United Way and the City of Chattanooga. For more information call 266-6751 or go to fortwoodcenter.org.

Tennessee Voices for Children

On the website tnvoices.org families can search for county by county resources, parenting guides, medication information and support groups. They can also connect with other parents who can help them navigate the mental health care system at 1-800-670-9882.

INDICATORS

*64: percent of children with emotional developmental or behavioral problems that accessed mental health care or counseling in the past year in Tennessee.

*60: percent of children with emotional developmental or behavioral problems that accessed mental health care or counseling in the past year nationally.

* 5.9: number of child or adolescent psychiatrists per 100,000 youth in Tennessee.

* 9.8: number of child or adolescent psychiatrists per 100,000 youth nationally.

* 8.5: percent of youth between 12 and 17 have had a major depressive episode in the last year in Tennessee.

* 8.2: percent of youth between 12 and 17 have had a major depressive episode in the last year nationally.

* 11: percent of youths from 9 to 12 made a suicide plan in the last year in Tennessee.

* 6.2: percent of youths from grade 9 to grade 12 made a suicide attempt in Tennessee.

* 2.3: percent of youths from 12 to 17 that are in specialized treatment programs or residential mental health treatments in Tennessee.

* 1 in 5: Number of children nationally who have a mental illness. Only half of those get the treatment they need.

Source: Tennessee Department of Mental Health and Substance Abuse Services, Tennessee Voices for Children

What are some things that should concern a parent?

* A sudden or persistent drop in school performance.

* Persistently aggressive behavior.

* Threats to self or others.

* Substantial mood swings.

* Hallucinations, paranoia or delusions.

* Acting very withdrawn, sad or overly anxious.

* Extreme difficulty interacting with friends and/or siblings.

* Extreme changes in sleeping and eating patterns.

* Increased or persistent use of alcohol or drugs.

What are common mental health conditions in children and youth?

* Anxiety disorders (e.g., OCD, panic disorder, PTSD).

* Mood disorders (e.g., depression, bipolar disorder).

* Substance use disorders.

* Eating disorders.

* The onset of psychotic illnesses is not common overall but the teen and young adult years are periods of higher relative risk.

Source: NAMI

The tantrums started before Sarah's baby could walk. They would start without warning and last for hours.

The baby's arms flailed. Then her little body went stiff, unmovable. In grocery stores, at family gatherings, at the ballpark, people watched Sarah wrestle with the 2-year-old who could never be consoled.

As a young teenager, her tantrums became more terrifying. Once, Sarah came home from work to find every piece of glass in the house shattered, jagged shards on the kitchen floor. That night she packed away the knives and glass for good.

"I am unhappy. I don't have any friends," Sarah, who didn't want to use her real name to protect the identify of her child, said her daughter would scream. "I want to kill myself. I will kill you. I will stab you to death. I will get a gun."

Most children who are mentally ill are never violent. But there are fathers and mothers in the Tennessee Valley and across the country who lie awake and wonder what their child is truly capable of.

While the nation remains stunned by the Connecticut school massacre carried out by Adam Lanza, some parents, psychologists and mental health advocates can imagine exactly how the chilling day could have occurred.

Since Sandy Hook Elementary, those who treat the mentally ill say teachers and parents have called for answers, wondering how they can prevent a kid they know from escalating to violence.

"Adam Lanza's mom is like every mom that's called our campus," said Karen Lee, who founded Elk River Treatment Program and Pinnacle Schools in North Alabama. "A lot of our kids have threatened their parents with physical violence, to use knives.

"They have beat up their parents. They are not the 6-year-olds anymore. They are the size of adults. When a mom is 5 foot 2 inches and 110 pounds, she doesn't stand a chance."

No one knows what drove Lanza to put a gun to his mother's head in Newtown two weeks ago or what caused him to go to the nearest elementary school and fire hundreds of rounds into first-graders.

But in scattered news reports, a storyline unfolds of a single mother worn to the point of breaking by a 20-year-old son with autism and possible mental health issues. There is no link between autism and planned violence, according to the Maryland-based Autism Society.

The Washington Post reported that Nancy Lanza had interrupted her routine of nearly always being at Adam's side and had gone on a trip by herself for several days before he shot her as she lay in bed. The Post reported that she had been looking into placing him in a mental health facility across the country.

After the shootings, a mother in Idaho wrote a blog post titled "I am Adam Lanza's Mother" and it went viral, revealing an undercurrent of fear felt by parents raising troubled children. The writer, Liza Long, described her smart, yet manipulative, 13-year-old son and how he had become unpredictable and uncontrollable with time.

She wrote about how the pupils of his eyes would grow, blacking out his blue irises when he went into a rage, how he had threatened to kill her because she had asked him to return an overdue library book, how he called her a "stupid b----" when she asked him to change his pants, how she traveled with all sharp household objects in a Tupperware container.

"I am sharing this story because I am Adam Lanza's mother. I am Dylan Klebold's and Eric Harris's mother. I am James Holmes's mother. I am Jared Loughner's mother. I am Seung-Hui Cho's mother. And these boys -- and their mothers -- need help. In the wake of another horrific national tragedy, it's easy to talk about guns. But it's time to talk about mental illness."

Experts say the essay points to some disturbing truths for the parents of the mentally ill. There are too few child psychologists in Tennessee. Private inpatient treatment is too costly. The system of doctors and psychiatrists is too complicated to navigate. Stigma keeps some parents from seeking services.

Sometimes the only solution for parents is to either give their child over to the state or go through the juvenile justice system. Nationally, between 70 and 80 percent of youths in detention facilities have untreated mental health needs, statistics show. The standard for serious treatment or hospitalization -- to be homicidal or suicidal -- often introduces help when it's too late and even then sometimes only treats the immediate crisis.

In a news conference after the shooting, President Barack Obama promised to make mental health care as easy to get as guns, Bloomberg News reported.

Some hope the flurry of talk about the system, spurred by the Sandy Hook Elementary shooting, will drive momentum to improve mental health services across the country and in Tennessee and Georgia.

•••

In six years, Sarah's little girl was hospitalized 10 times. She did eventually try to kill herself. She gained weight. She ran away. She acted sexual with men much older. She lay in bed and wouldn't move for days. Hospital doctors took her in when Sarah panicked.

They gave the girl pills to stabilize her mind. Then they sent her home, again.

Meanwhile, Sarah had learned to keep a getaway bag in the car. When her daughter got home from school and became furious for no reason, Sarah sat in the locked car outside their apartment and watched her through the windows.

"We didn't take pictures of those years," Sarah said.

The diagnoses feel like puzzle pieces for parents like Sarah. ADHD. Bi-polar. Depression. Oppositional defiant disorder. Conduct disorder. Schizophrenia. Anxiety disorder. They explain a fragment of their child's brain, but, to many parents with the most difficult children, their loved ones remain mysteries.

The system to treat mentally ill children has changed dramatically over the decades. Fifty years ago, the standard of treatment was to remove children from their home.

Children would stay in large state hospitals for three to six months. In schools, they were kept in self-contained classrooms, said Millie Sweeney, assistant director for programs at Tennessee Voices for Children, an advocacy organization for mentally ill children.

But between public battles over patient rights, mistreatment and medical costs starting in the 1960s, practices changed. Sprawling state hospitals that took in adults and children with mental health problems and developmental disabilities were shuttered. State beds for the mentally ill shrank from 1,500 a decade ago to 500 this year, said Sita Diehl, director of state policy and advocacy for the National Alliance for Mental Illness in Tennessee.

There are no state beds left for children. Last year, the last remaining child psychiatric unit at a state hospital -- the Middle Tennessee Mental Health Institute -- closed, she said.

Many say this is good. The system changed because it didn't work. Research now shows that children who improve from mental, emotional or behavioral disorders are treated in their communities and their parents are trained to manage them at home.

"The theory was that [large state hospitals] were therapeutic environments," said Bob Carolla, a spokesman for NAMI. "The idea was that they would get better. That was the theory. The reality fell far short. You ended up with people being warehoused, not receiving much care at all."

Now, what remains is a decentralized and complex mental health care system with financial and administrative roadblocks to care, parents and experts say.

•••

Children on TennCare have far more access to mental health treatment than those with private insurance, Sweeney said. She has seen middle-income families exhaust all financial resources and amass debt just so they can get on TennCare to receive mental health treatment for their child.

Federal law doesn't require insurance companies to offer mental health coverage. Appointments, testing and medications can be extremely costly when paid out of pocket. In one study, the average lifetime cost per case of bi-polar disorder was estimated at up to $624,785, according to NAMI.

And, until 2014 when the Affordable Care Act takes full effect, a diagnosis for a child or hospitalizations for a child can limit a family's ability to change jobs due to possible denial of insurance coverage for pre-existing conditions.

Interventions that research from the Substance Abuse and Mental Health Service Administration show have proven affective -- home therapy, respite services and parent skill-building courses -- are rarely covered by private insurance, said Sweeney.

And finding a child psychiatrist is difficult because the numbers are shrinking in Tennessee, said Diehl. The amount of paperwork required to prescribe medications to children is a deterrent, and state reimbursements don't compensate for the additional training needed to specialize in childhood issues, said Diehl.

Many people use their general practice physicians to handle their children's mental health, but that can lead to misdiagnoses, she said. Referrals are challenging and wait lists for an expert are long. Often those involved with a child's care management don't communicate about or agree on a family plan, said Diehl.

Navigating the system has become such an issue, experts say, that the Affordable Care Act sets aside funding for system navigators to help families understand how to find help. Organizations like Tennessee Voices for Children have trained parents and staff to help families with questions, said Sweeney.

For children who exhibit the worst behaviors -- suicidal actions, violence, fire setting, animal abuse or theft -- there are three options: brief hospitalization, private residential treatment programs or juvenile detention.

Hospitalization is only a short-term fix. Acute-care psychiatric hospital stays last 7.8 days on average, a drop of 60 percent since 1993. Doctors say it takes two weeks to stabilize a patient with new drugs, Bloomberg News reports.

The other option, private, long-term adolescent treatment centers, is expensive and loosely monitored.

"Standards can vary widely, philosophies can vary widely. You could have one program that involved a combination of medications and talk therapy and recreation," said Carolla. "On the other hand you may have one that doesn't believe in medication. Others use special diets. Whether or not they are evidence based isn't something that is required by a state."

Lee started Elk River Treatment Program in North Alabama, not far from Chattanooga, seven years ago. She doesn't tell people the address because she is afraid someone could come and help a person in treatment escape. She raised two troubled teen sons. A few months ago both her sons were charged with trafficking marijuana, according to the Huntsville Times.

Since the residential program was started, she said, thousands of people from all over the country have called. Only 600 patients have been admitted because of space.

The first 56 days at Elk River cost $25,000, and that doesn't include medication. After that, the cost is $6,000 a month. In Tennessee the cost of residential treatment averages $7,200 amonth. In-patient hospitalization averages almost $17,000, said Sweeney.

Most employers don't offer insurance that would cover the costs, Lee said. A short period of the stay could be covered by some insurers, but only if the patient shows a high risk of harming himself or others.

In treatment at Elk River, teens meet with therapists and do outdoor activities. Some stay for eight weeks, some more than a year, said Lee.

It's a strict military-style environment. Patients get a code of conduct and a five-second window for compliance. Those who don't comply with the program are put in solitary confinement, sometimes restraints, she said.

Outside Elk River, there are success stories. But sometimes there are sad endings, Lee said.

"Once there is no life behind those eyes, you do see this isn't just a disorder," said Lee. "We have gotten to a point where we need to contain this child."

Sarah said she only started to see improvement in her daughter when she sent her for a two-month stay at Parkridge Valley Hospital in Chattanooga. Something about the intensive therapy worked, and her daughter wasn't the same.

Now she is a sophomore in college with a "B" average.

"She gets it. She knows the hell she went through," Sarah said. "She doesn't remember much of her time through those years."

•••

In the coming years, Tennessee Voices for Children and NAMI Tennessee hopes politicians will take notice and act on the holes in the mental health care system. Measures in Obamacare will help, but it's still unclear what mental health coverage will change in Tennessee, said Sweeney.

Tennessee Voices for Children received state contracts to help implement a "system of care" model in Memphis, Nashville, Columbia and Knoxville. The goal is to develop a coordinated system of private and public services that supports families with mentally ill children. The approach simplifies things and is individualized for each child, said Sweeney.

Since the mid-1990s, the system-of-care approach has spread to 100 communities across the country. Research from the U.S. Department of Health and Human Services show it is helping. In places where there is a system of care for mentally ill children, suspensions and expulsions at school decreased by 44 percent. Twenty-two percent of youths reported lower levels of depression. Suicide attempts dropped by more than two-thirds and self-reported arrests dropped from 27 percent to 11 percent.

Tennessee Voices for Children hopes to expand system of care to cities like Chattanooga.

Tennessee Rep. JoAnne Favors, D-Chattanooga, said she will push for reforms like this next year and hope fellow lawmakers will finally make mental health care improvements a priority.

"I hope this [shooting] will be a wake-up call," said Favors. "Until we look at mental and physical health care under one umbrella there is going to be a fragmented approach."

Favors said a woman with several mentally ill children called her for help. She told Favors that she didn't know what to do, that she knew one day her son was going to get killed for acting out.

"If they aren't violent or a threat to themselves there is nothing that can be done from a legal standpoint" right now, Favors said. "It's so sad that we wait until something horrific happens before we are ready to take action."

about Joan Garrett McClane...

Joan Garrett McClane has been a staff writer for the Times Free Press since August 2007. Before becoming a general assignment writer for the paper, she wrote about business, higher education and the court systems. She grew up the oldest of five sisters near Birmingham, Ala., and graduated with a master's and bachelor's degrees in journalism from the University of Alabama. Before landing her first full-time job as a reporter at the Times Free Press, ...

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