By Liz Szabo, USA TODAY
Heather Tillmann desperately loves her son. And she is sick with worry.
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.' "
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.
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.
even with insurance, can afford to pay for residential psychiatric care
on their own, Manderscheid says. Most families rely on publicly funded
"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
Mental illness is more common than many realize.
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
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
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.
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.
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.
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."
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
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.
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.
- 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.
- 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.
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
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
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.
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.
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
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
"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."