This is a must read for every proactive caregiver. VOM&O congratulates USA TODAY on excellent reporting.
In this special report, USA TODAY reveals that more than half a million Americans with serious mental illness are falling through the cracks of a system in tatters.
The mentally ill who have nowhere to go and find little sympathy from those around them often land hard in emergency rooms, county jails and city streets. The lucky ones find homes with family. The unlucky ones show up in the morgue.
“We have replaced the hospital bed with the jail cell, the homeless shelter and the coffin,” says Rep. Tim Murphy, R-Pa., a child psychologist leading an effort to remodel the mental health system. “How is that compassionate?”
States looking to save money have pared away both the community mental health services designed to keep people healthy, as well as the hospital care needed to help them heal after a crisis.
“We have replaced the hospital bed with the jail cell, the homeless shelter and the coffin”
Rep. Tim Murphy, R-Pa.
States have been reducing hospital beds for decades, because of insurance pressures as well as a desire to provide more care outside institutions. Tight budgets during the recession forced some of the most devastating cuts in recent memory, says Robert Glover, executive director of the National Association of State Mental Health Program Directors. States cut $5 billion in mental health services from 2009 to 2012. In the same period, the country eliminated at least 4,500 public psychiatric hospital beds — nearly 10% of the total supply, he says.
The result is that, all too often, people with mental illness get no care at all.
Nearly 40% of adults with “severe” mental illness — such as schizophrenia or bipolar disorder — received no treatment in the previous year, according to the 2012 National Survey on Drug Use and Health. Among adults with any mental illness, 60% were untreated.
Although mass shootings focus the public’s attention on mental illness, patients and families coping with it suffer private tragedies every day, says Ron Manderscheid,executive director of the National Association of County Behavioral Health and Developmental Disability Directors.
In a series of stories in the coming months, USA TODAY will explore the human and financial costs that the country pays for not caring more about the 10 million Americans with serious mental illness
Karen Kelley knows those costs well, resorting to desperate measures to find care.
Kelley, 55, has battled depression for 15 years. Two years ago, she says, the disease threatened to pull her under.
“I was in a very dark place and could not see the way out,” says Kelley, a mother of three adult children who lives in Burlington, Vt. “I just felt like I was letting everybody down around me, and I was never going to get better. It’s like being in a tunnel that’s encased in with black, and you can’t see the way you came in or the way out, and you’re all alone.”
Kelley felt hopeless, as if the world would be a better place without her. Her psychiatrist tried to have Kelley admitted to a hospital but was told there were no available psychiatric beds. Not in the city. Not in the entire state.
“I was in a very dark place and could not see the way out”
A year earlier, Tropical Storm Irene had barreled through New England, inundating Vermont’s only psychiatric hospital with 8 feet ofwater, scattering its mentally ill patients across the state. The flood closed the aged hospital for good, and Vermont has yet to open a new state psychiatric facility.
Kelley has attempted suicide several times. Her husband and daughter, afraid that she would hurt herself again, took turns staying with her most of the time.
Kelley says she didn’t really want to die, but she realized there was only one way to get into a hospital.
Karen Kelley finishes up making cornbread to go along with some corn chowder at her Burlington home.
(Photo: Ryan Mercer for USA TODAY)
She swallowed an entire bottle of pills, walked into the next room and told her husband, “Now they will have to admit me.”
Patients and their advocates say the country’s mental health system has been drowning for a long time, not from floodwaters but from neglect.
Suicide claims the lives of 38,000 Americans a year — more than car accidents, prostate cancer or homicides, according to the Centers for Disease Control and Prevention. About 90% of suicides are related to mental illness, says Thomas Insel, director of the National Institute of Mental Health.
People with mental illness die early for a variety of reasons, Insel says. Some are victimized by violence. Others are too sick to take care of their health. On average, people with serious mental illness die up to 23 years sooner than other Americans, giving them a life expectancy on par with people in Bangladesh, Insel says.
Many with untreated mental illness are too sick to work. Insel notes that 44% of those receiving federal disability payments have a serious mental illness.
“The way we pay for mental health today is the most expensive way possible”
Thomas Insel, director of the National Institute of Mental Health
Mental illness costs Americans under 70 more years of healthy life than any other illness, Insel says. That’s because mental illness, unlike cancer or heart disease, is not a disease of aging. It often develops when people are in the prime of life, arising during adolescence or young adulthood. Left untreated, mental illness can rob people of decades of health.
Although some may believe mental illness doesn’t affect them, Insel notes that it costs the country at least $444 billion a year. Only about one-third of that total goes to medical care, Insel says. The bulk of the cost to society stems from disability payments and lost productivity. That total doesn’t include caregivers’ lost earnings or the tax dollars spent to build prisons.
These losses are especially tragic, Insel says, because of growing evidence that early intervention can prevent mentally ill people from deteriorating, halting what once seemed like an inevitable decline.
“The way we pay for mental health today is the most expensive way possible,” Insel says. “We don’t provide support early, so we end up paying for lifelong support.”
The new asylums
Patients re-institutionalized in jails and homeless shelters
For Candie Dalton, caring for an 18-year-old son with schizophrenia is “incredibly isolating.”
Dalton, of Englewood, Colo., drives to her son’s home twice a day to watch him take his medication, in addition to working full-time and caring for a younger child at home. Her son has been hospitalized six times in four years, most recently in April. He’s been arrested twice for unpaid parking tickets.
“This is a disease, just like cancer,” Dalton says. “It’s just as devastating. But you don’t get the support. You don’t get people saying, ‘Oh, your child is in the hospital. Can I come over with a casserole?’ ”
Instead, her son’s friends turn around on the street to avoid him. Some people have even blamed Dalton for his illness: “One person said to me, ‘You really need to start praying to God and asking for his forgiveness.’ ”
People such as Kelley and Dalton are “casualties of our disorganized system,” Manderscheid says. “The mental health care system is in shambles. If we cared more about this, we probably would do something about it.”
In countless ways, Manderscheid says, the USA treats people with mental illness as second-class citizens. They’re neglected not just by friends and neighbors, but by lawmakers, who slash cost-effective services and discriminate against them through federal policies that block access to care.
Last year, Dalton’s son was nearly shot by police.
He had become psychotic and told his mother that he needed to kill someone to make the voices in his head “stop thinking.” Dalton fled her home with her younger child and called the police, begging them not to hurt her son.
When Dalton returned home, her son was stabbing at his car with a kitchen knife. Four police officers were pointing their guns at him. One ordered her son to drop the knife, or he would “put a hole in him big enough to drive a Mack truck through.”
Dalton’s son dropped his knife. Police then prepared to leave, telling Dalton that technically her son hadn’t committed any crime.
“I very forcefully told them,” Dalton says, “that they had to transport him to the emergency room.”
Even as the population suffering from mental illness grows, hitting 9.6 million in 2012, the number of psychiatric beds declined to just over 108,000.
In Vermont, an ambulance rushed Karen Kelley from her home to a Burlington emergency room, where doctors revived her and saved her life.
Three days later, after doctors had made sure that Kelley’s heart hadn’t been damaged by the overdose, they found a place to send her: out of state.
The closest psychiatric bed that staff could locate was in Massachusetts, 215 miles away. The ambulance ride alone cost $3,600, one way. Medicare paid most of the bill.
Kelley was luckier than most.
“We’ve got patients living in our emergency department”
Dr. Ray Keller
In March, a psychotic patient spent two weeks in the same ER, waiting for a psychiatric bed to open up, says Ray Keller, medical director of the emergency room at Burlington’s Fletcher-Allen Healthcare, where Kelley was treated. “We’ve got patients living in our emergency department,” he says.
Mental health bed shortages are a national, man-made disaster that people rarely notice until it affects them, Keller says.
“We have to do something. It’s an abomination,” says Keller, noting that he sometimes wonders, “Can’t we get some FEMA trailers in here?”
For many people with mental illness, the ER can be a kind of purgatory.
They end up there because there are no services to keep them healthy. Even when all other resources have been cut, Keller says, “we’re the ones who don’t say no.”
In some hospitals, psychiatric patients get private rooms in the emergency department. Elsewhere, they may “board” in hallways, surrounded by noise, trauma and bright lights 24 hours a day, says Mark Pearlmutter, vice president and chief of emergency network services at Steward Health Care in the Boston area. Some patients are physically restrained.
The backups are so severe that they threaten the care given to all emergency patients, as those without mental illness are forced to wait longer for care, says John Bednar, medical director of Cone Health Emergency Services in Greensboro, N.C.
Those delays could be deadly, Bednar says, as patients with subtle but life-threatening conditions spend longer in the waiting room.
As states close hospital beds, the number of mentally ill patients boarded in the ER is growing, Bednar says.
Mental illness sends nearly 5.5 million people to emergency rooms each year, accounting for 4% of all visits, according to the federal Agency for Healthcare Research and Quality. Because many of the mentally ill are uninsured, hospitals often are uncompensated for their care, Pearlmutter says.
That increases the burden both on hospitals and taxpayers, who support emergency care through payments to medical centers that treat a “disproportionate share” of indigent patients. In fiscal year 2012, the USA spent $11.4 billion on these payments, about $456 million of that going to the care of the mentally ill.
Many patients cycle through a revolving door of emergency room visits, jails and homeless shelters, Murphy says.
According to the National Alliance on Mental Illness, 40% of adults with serious mental illness are arrested at some point, often for petty crimes – such as loitering or causing a public disturbance – that are caused by their illness, rather than an intent to harm.
About 2 million people with mental illness go to jail every year, according to a 2013 study in Psychiatric Services in Advance. About 15% of all state prisoners and 24% of jail inmates are psychotic, according to the Bureau of Justice Statistics.
Incarceration carries a high price tag; in New York, the cost to keep one person in prison is $60,000 a year.
Searching for help as services disappear
Mental health programs are often the first to be cut
As states have cut mental health funding, many have increased spending on prisons and jails, says D.J. Jaffe, executive director of MentalIllnessPolicy.org, which advocates for patients with serious mental illness.
He says research shows that investing upfront in mental health can yield big dividends.
A Georgia study found that providing comprehensive mental health services to mentally ill people involved in the criminal justice system cut the number of days that participants spent in the hospital by 89%, and the number of days spent in jail by 78%. In all, the program saved more than $1 million in its first year.
A jail diversion program in Massachusetts serving 200 mentally ill people — at an initial cost of $400,000 — saved $1.3 million in emergency health services and jail costs, according to the Massachusetts Department of Mental Health.
A variety of services — such as supported housing, supported employment and a comprehensive program called Assertive Community Treatment — are cost-effective ways to dramatically improve the lives of people with mental illness, says Mary Giliberti, executive director of the National Alliance on Mental Illness. Yet fewer than 2% of adults with serious mental illness receive these services, according to the Substance Abuse and Mental Health Services Administration.
In a tough economy, mental health services are often the first state programs cut, says Kenneth Stolle, a former Virginia state senator and current sheriff of the Virginia Beach city jail. “It’s easy to campaign on law and order,” Stolle says. “Mental health isn’t sexy.”
The number of inpatient psychiatric beds available to patients such as Kelley, who need intense care for short periods, has fallen 32.5% since 1995, according to the American Hospital Association.
The actual number of inpatient beds is even lower, because at least one-third of state psychiatric hospital beds are used for “forensic” patients, or mentally ill criminal suspects awaiting trial, according to the Virginia-based Treatment Advocacy Center.
In some hospitals, up to 90% of inpatient beds are occupied by forensic patients or sex offenders who have completed their prison terms but have been deemed unsafe to release, Glover says.
More than 350,000 mentally ill people are behind bars. That’s 10 times more people with mental illness in jail or prison than in state-funded psychiatric beds, which are often the only ones accessible to indigent and uninsured patients, according to an April report from the Treatment Advocacy Center. “Twenty percent of my inmates have a mental illness” says, Kenneth Stolle.
In some rural areas, there are no services at any price.
More than half the counties in the country have no practicing psychiatrist, psychologist or social worker, according to the Department of Health and Human Services.
In every state, “the legislature knows we have an abnormally high number of mentally ill people in jails, and they have elected not to fund them,” Stolle says. Though he understands the tough choices lawmakers face, Stolle says, “because of the decisions that the states make, more patients are being forced into jail.”
Two years ago, when the Virginia Beach City Council threatened to cut $125,000 in mental health services from its budget, Stolle made up the difference with money from his jail’s reserve fund. It was money well-spent, he says, because he’d rather see people with mental illness get the treatment they need, than be locked up for minor offenses when their disease isn’t well-controlled.
“Twenty percent of my inmates have a mental illness,” Stolle says. “If I can keep five people out of jail, I’d break even.”
Few lawmakers have that sort of vision, says Paul Greenberg, director of health economics at the Boston-based Analysis Group, a consulting firm.
“I think I did everything I could … the help just wasn’t there.” says Candie Dalton.
Rather than recognize the need to pay now or pay later, “we’ve created this fake third option where we say, ‘I prefer not to pay taxes and just ignore the problem,’ ” Greenberg says.
Patients with mental illness don’t have that option.
“I think I did everything I could,” says Candie Dalton, who says she spent years trying to convince doctors that her son’s problems were more than typical teen moodiness. “The help just wasn’t there. … I’m his case manager. I’m his everything. And it’s exhausting.”