Newtown shooting prompts calls for mental health reform

Heather Tillmann desperately loves her son. And she is sick with worry.

His rages began at age 3½. By 4, her son was threatening to kill himself and his parents. When he was 7, he tried to stab his babysitter with a screwdriver, and he has been arrested for stabbing a teacher with a pencil. One day, he squeezed the family hamster to death, then played with its body.

"He admitted that he wanted to see it die," says Tillmann, of Milwaukee.

He was 8 years old.

Yet Tillmann considers her son, now 9, "one of the lucky ones."

After fighting for four years to get the appropriate care, her son has finally been placed in a highly structured, state-funded residential facility, where his intensive care costs $13,000 a month. Tillmann acknowledges that everyone in her family is safer with her son in the hospital — especially his 5-year-old brother, who has borne the brunt of her son's attacks.

"They said he's not ready for discharge," Tillmann says. "They said, 'He will probably be here until the spring, or until the funding gets cut.' "

Like many mothers of mentally ill children, Tillmann worries about the future. Watching the scenes from the Newtown, Conn., shooting last month, she felt sick with the fear that her son might be capable of similar violence. "I wait for the time that this could be my son," Tillmann wrote in an open letter published online. "I wrote my letter in hopes that someone would listen," she says, because she has "come to the realization that he could and will hurt someone someday."

Tillmann says her family is one of millions around the country struggling to help a loved one with a mental illness. Many suffer in silence and isolation, with little or no outside support.

The recession has made a bad situation worse, says Ron Manderscheid, executive director of the National Association of County Behavioral Health and Developmental Disability Directors.

States have cut at least $4.35 billion in public mental health spending from 2009 to 2012, or about 12% of their total budgets, according to the National Association of State Mental Health Program Directors. Inpatient hospital care is even more elusive. In just the past four years, the public health system has lost more than 3,200 psychiatric hospital beds, almost 6% of the total, the group says. Another 1,249 beds are in danger of being lost, as states grapple with tight budgets.

Few people, even with insurance, can afford to pay for residential psychiatric care on their own, Manderscheid says. Most families rely on publicly funded hospital care.

"It is virtually impossible to get mental health care for many people who desperately need it," Manderscheid says. He notes that one in three people with "severe" mental illness never receive any treatment at all. Two in three of those with "moderate" illness remain untreated, as well, according to the National Institutes of Health.

Mental illness is more common than many realize.

In any given year, one in four adults — or nearly 60 million Americans — experiences a mental health problem. The ailments range from depression and anxiety to attention-deficit hyperactivity disorder, anorexia or schizophrenia, according to the National Alliance on Mental Illness. Rates are similar in children, with one in five overall having a "diagnosable mental illness," according to the American Academy of Pediatrics.

Now, the enormity of the Sandy Hook tragedy is galvanizing the mental health community and forcing the nation to examine what is often described as a failing system, one that is underfunded, overburdened and ultimately ineffective.

Common thread in massacres

Police have not yet released any information about the mental state of Adam Lanza, 20, who killed his mother at her home, and 26 others at Sandy Hook Elementary School in Newtown, before killing himself. Some news reports have described Lanza as having a form of autism, Asperger's syndrome, that is not associated with violence. Police have not revealed whether Lanza had additional mental health problems.

Yet the scale and nature of the shooting lead many to the inescapable conclusion that when the full story of Sandy Hook is told, mental illness will be a piece of the puzzle, as it has been with other mass shootings. Indeed, the perpetrators of massacres at Virginia Tech in 2007, Tucson, where Rep. Gabby Giffords was shot in 2011, and the Aurora, Colo., theater shooting last summer had all struggled with mental illness.

While advocates have called for change before — notably, in the wake of other mass shootings — some say this time, with the loss of so many young children and their teachers, is different. President Obama himself made the mental health connection at his first news conference after the Newtown shooting. "We are going to need to work on making access to mental health care as easy as access to a gun," he said.

Even under the best of circumstances, caring for a mentally ill child or loved one is a long, hard journey. But the challenges are even more daunting in a mental health care system that advocates describe as painfully, tragically broken. Services are fragmented and hard to find, with many patients waiting months for in-patient mental health treatment. Families frequently spend their life savings to provide care. And state laws can make it difficult or impossible to hospitalize a seriously ill patient against his or her will.

The stigma of mental illness also makes it harder for families to get support, says Lynne Peterson of Minnesota, whose two sons both suffer from mental illness. One, now 22, attempted suicide and is homeless. The other, age 20, has pleaded guilty three times to assault.

"If this were cancer or diabetes, we would treat it," Peterson says. "My son's doctor said, 'Look, if this were a broken leg, we could put up the X-ray and everyone could see it.' With bipolar, it's different."

Mothers like these say they're speaking out not just to prevent future violence. They're also asking for the public's compassion. Many Americans still see mental illness as a character flaw. But Peterson describes her sons' conditions as a disease that is beyond their control, but which can be treated with therapy and medication.

"Anyone who knows my sons knows they are good boys with a good heart," Peterson says. "No matter what diagnosis your kid has, it doesn't change what is good about them. We love them. They're ours."

State services are lagging

While some states do better than others, a 2009 report from the National Alliance on Mental Illness gave the USA a grade of D in providing access to mental health care. While no state received an A, Connecticut was one of six states that received a B.

"We have been failing for 30 years," Manderscheid said.

For decades, the stigma of mental illness has kept families from talking about their problems. The lack of public discourse has allowed an ailing system to continue to languish, experts say, even as the number of people in need has grown.

Many have asked if some of the most notorious attacks in recent years could have been prevented if the suspect's mental illness had been diagnosed and treated sooner:

Virginia Tech: Seung-Hui Cho, 23, who killed 32 people and wounded 17 in Blacksburg, Va., in 2007 before killing himself, had a long history of mental illness. Cho was diagnosed with severe social anxiety disorder as a teenager. A judge in 2005 found that Cho presented "an imminent danger to himself as a result of mental illness" and ordered him to receive outpatient psychiatric treatment.

Seung-Hui Cho, 23, who killed 32 people and wounded 17 in Blacksburg, Va., in 2007 before killing himself, had a long history of mental illness. Cho was diagnosed with severe social anxiety disorder as a teenager. A judge in 2005 found that Cho presented "an imminent danger to himself as a result of mental illness" and ordered him to receive outpatient psychiatric treatment. Tucson: Jared Lee Loughner, 24, who is serving a life sentence without parole for killing six people and wounding 19 others in 2011, was diagnosed with schizophrenia by a court-appointed psychiatrist. He also suffered from depression in high school.

Jared Lee Loughner, 24, who is serving a life sentence without parole for killing six people and wounding 19 others in 2011, was diagnosed with schizophrenia by a court-appointed psychiatrist. He also suffered from depression in high school. Aurora: James Eagen Holmes, 24, who is accused of killing 12 and injuring 58 people at an Aurora, Colo., movie theater in July, has been described as mentally ill by his defense attorney. Prosecutors presented their case against Holmes at a preliminary hearing Monday.

Regardless of Lanza's mental state, advocates say, the country has endured too many mass shootings — and too many daily tragedies across the nation that never attract any notice. A USA TODAY analysis published a week after the Newtown shooting found that, on average, a mass killing — with four or more victims, not including the perpetrator — occurs once every two weeks in the USA.

That same week, the American Academy of Pediatrics published a letter to Obama, asking him to lead an effort to reform mental health care, as well as to ban assault rifles. In fact, dozens of mental health and substance abuse groups wrote an open letter to the president just a week after Newtown, making the same requests. The mental health groups went into detail as to precisely what would be needed: double the capacity of community-based mental health services; improve community and school-based programs; and teach students at all levels to recognize the signs of mental illness or addiction. Funding such an expansion at a time when the federal government is looking for places to cut would be challenging, advocates acknowledge.

One mother's essay about her mentally ill son attracted enormous attention in the days after the Newtown shooting. Idaho mother Liza Long, who titled her essay, "I Am Adam Lanza's Mother," went viral online, forwarded by hundreds of thousands of readers. Many other parents have been using this tragedy as a teachable moment.

"You have to put it out there," Tillmann says, of telling her story in a public blog. "Otherwise, people don't understand."

Care puts families in financial bind

Leisl Stoufer, a California mother of a bipolar child, tells the story of her son holding his babysitter at knifepoint when he was just 5 years old. Although the boy had thrived while staying in a residential facility, he deteriorated soon after coming home, unable to function outside a rigorously structured environment. Stoufer titled her online letter, "Dear Mr. President, We Have a Problem: My Son is Mentally Ill. I'm Scared."

Stoufer is writing letters to every governor, asking for more funding.

"I know we are hanging on a fiscal cliff," says Stoufer, whose son is now 15. "But there is no way that an individual could pay for the services a child like mine requires."

Though myriad factors can stand in the way of adequate mental health treatment, often it comes down to one thing: dollars.

Some psychiatrists don't take health insurance, which historically has paid doctors much less for mental health services than for other medical care, says Liza Gold, a forensic psychiatrist at the Georgetown University School of Medicine in Washington.

In many cases, families use up their insurance plan's lifetime benefits, Manderscheid says. Then, they burn through their savings. Eventually, families may qualify for Medicaid. Yet finding a doctor who accepts Medicaid, which typically pays less than other forms of insurance, is also difficult. The Affordable Care Act, which requires new health insurance exchanges to provide mental health care and substance abuse treatment, has the potential to help many families, he says.

Minnesota's Lynne Peterson, who adopted the two brothers when they were 11 and 14, says it would have been easier to get them mental health help if the boys had remained in foster care. Then, a social worker would have arranged for treatment. As a mother, she had far less clout to ask for treatment, Peterson says. Often, she felt "evaluated, even blamed" when discussing her sons' problems. "The number one thing parents need is to be believed."

Interest in mental health peaks after shootings, then declines as memories fade, Stoufer says. "Now is the time to speak out about this, because it's on everybody's mind," Stoufer says.

These mothers say they are willing to bear the brunt of public criticism and bare their families' private traumas, because all are desperate for help.

"This time," Manderscheid said, "our grieving must have a direction and a purpose to galvanize action."

The country needs to act, he says, so that "these little children didn't die in vain."