Cost of not caring: Stigma set in stone

Liz Szabo | USA TODAY

Stigma against the mentally ill is so powerful that it's been codified for 50 years into federal law, and few outside the mental health system even realize it.

This systemic discrimination, embedded in Medicaid and Medicare laws, has accelerated the emptying of state psychiatric hospitals, leaving many of the sickest and most vulnerable patients with nowhere to turn.

Advocates and experts who spoke with USA TODAY describe a system in shambles, starved of funding while neglecting millions of people across the country each year.

The failure to provide treatment and supportive services to people with mental illness – both in the community and in hospitals – has overburdened emergency rooms, crowded state and local jails and left untreated patients to fend for themselves on city streets, says Patrick Kennedy, a former congressman from Rhode Island who has fought to provide better care for the mentally ill.

The USA routinely fails to provide the most basic services for people with mental illness -- something the country would never tolerate for patients with cancer or other physical disorders, Kennedy says.

"Mental health is a separate but unequal system," Kennedy says. "We have a wasteland of people who have died and been disabled because of inadequate care."

Although most people with mental illness are not violent, the USA's dysfunctional, long-neglected mental health system is under a microscope because of mass shootings in which the perpetrators had serious psychiatric problems. 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 nearly 10 million Americans with serious mental illness.

Stigma, a common thread in this series, forces many to live in shame rather than seek support, even as their lives unravel. Yet patients who want help often can't find it, says Kennedy, who has acknowledged his own struggles with bipolar disorder and drug addiction.

Stigma even shaped the crafting of the Medicaid law a half-century ago, because Congress didn't want to "waste" federal money on mental illness, says Ron Manderscheid, executive director of the National Association of County Behavioral Health & Disability Development Directors. "People were operating under the belief that mental health was a black hole for money," Manderscheid says.

An obscure provision of the Medicaid law specifies that funds may be used for hospitals treating physical conditions but generally not for mental health, says Tim Murphy, R-Pa., a child psychologist who has introduced legislation to ease these restrictions.

The Medicare law discriminates against those with mental illness, as well, by limiting the number of days that patients can receive inpatient psychiatric care. Medicare imposes no such limits for physical health, says Mark Covall, president and CEO of the National Association of Psychiatric Health Systems.

By denying hospital care to the mentally ill, Murphy says Congress set two standards for health, effectively telling the country that the mentally ill are less deserving of a decent life than others. By forcing the mentally ill to live with sickness, confusion and disability, federal law reinforces the assumption that the mentally ill are incapable of leading functioning, safe, successful lives.

"The federal government has set so many barriers to getting care, which they have done with no other type of illness, and it is wrong," Murphy says. "There is no other area of medicine where the government is the source of the stigma."

Without federal support, states haven't been able to afford to keep their psychiatric hospitals open. States closed 10% of their hospital beds from 2009 to 2012, says Robert Glover, executive director of the National Association of State Mental Health Program Directors.

Private hospitals have reduced their psychiatric beds, as well, because Medicare and Medicaid typically pay less for inpatient mental healthcare than for medical care, says Ron Honberg, national director of policy and legal affairs at NAMI, the National Alliance on Mental Illness.

"It's just pure discrimination," Covall says. "It's penalizing the poor and disabled."

Mental health advocates have had more success reforming the private insurance system.

The Affordable Care Act, for example, requires that health exchanges provide equal mental and physical health coverage.

While in Congress, Kennedy led the fight to require private insurers to provide equal coverage for physical and mental health, resulting in a 2008 "parity" law that applies to policies issued after July 1. Kennedy has joined in lawsuits against insurance companies to force them to comply.

Although Medicare has corrected some of its unequal payments in recent years, it isn't affected by the parity law, Kennedy says.

The federal government hasn't yet issued rules governing how the parity law affects Medicaid, the largest provider of mental health services in the country.

Pastor Rick Warren, a best-selling author, struggled to find long-term care for his son, Matthew, who suffered from depression for many years. "At one point, we were counseled that Matthew needed extended, long-term help in a long-term care facility," Warren told USA TODAY. "When we began to look for one, we couldn't find one."

Warren, founder of Saddleback Community Church in Orange County, Calif., began speaking out about mental illness after Matthew killed himself last year, at age 27. Warren compares the stigma of mental illness to that of AIDS and HIV. In both cases, people are blamed for bringing suffering upon themselves, he says.

"If I have diabetes, there is no stigma to that," says Warren, who is making mental health one of his key ministries. "But if my brain doesn't work, why am I supposed to be ashamed of that? It's just another organ. People will readily admit to taking medicine for high blood pressure, but if I am taking medication for some kind of mental problem I'm having, I'm supposed to hide that."

Tracy Love suffered from mental illness for 20 years before getting help.

The delay led to frequent panic attacks, drinking and drug use, abusive relationships, three suicide attempts and a felony conviction.

After Love's first suicide attempt 30 years ago, her parents told her to "stop feeling sorry for yourself and snap out of it," she says.

"It was only after I started to get better that I came to find out there is mental illness in my family," says Love, 52, who lives near Rochester, N.Y. "Nobody ever talked about it."

Doctors failed to diagnose Love's mental illness, even after that suicide attempt sent her to the hospital. She finally found help in the unlikeliest of places — jail — where Love was incarcerated after stabbing an abusive boyfriend.

A jail psychiatrist, who interviewed her after the arrest, was the first person to diagnose her with major depression and post-traumatic stress disorder, says Love, who credits that doctor with changing her life. The incident cost Love dearly. She lost her job and custody of her 10-year-old son for three years. Although Love has turned her life around and works on a contract basis in mental health, she says her felony record has kept her from finding a permanent job.

"If someone had listened to me the way that psychiatrist listened to me in jail," Love says, "I think maybe my illness wouldn't have gotten that far."

Tracy Love: My jail psychiatrist saved me Tracy Love knew her whole life that something was wrong, but she didn’t get the help she needed until she went to jail.

On average, people with mental illness wait nearly a decade to get treatment after symptoms first appear, according to the National Institute of Mental Health.

Nearly 40% of adults with serious mental illness received no treatment in the previous year, according to the 2012 National Survey on Drug Use and Health, produced by the Substance Abuse and Mental Health Services Administration. Among adults with any mental illness, 60% were untreated. Though some people with mental illness don't realize they're sick, others simply can't find help.

It's common for mentally ill patients — who go to the hospital in search of treatment for a psychiatric crisis — to languish for weeks in emergency rooms, says Robert Pierattini, a professor at the University of Vermont College of Medicine and chair of psychiatry at Fletcher-Allen Healthcare in Burlington.

In November, the son of Virginia state Sen. Creigh Deeds, a former gubernatorial candidate, was released from an emergency room because staff there couldn't find a psychiatric bed. Hours later, he stabbed his father, then fatally shot himself. The senator survived and has become an advocate for changing mental health laws.

"If this were cancer, we'd be talking about giving patients the very best treatments," Pierattini says. In mental health, "a peculiarity in the funding formula is deciding how we treat patients."

Funding is so poor and services are so hard to find that many patients can get help only after they've become psychotic, Manderscheid says.

That's akin to treating diabetes only after someone needs a leg amputated, Kennedy says.

Keris Myrick, who has schizoaffective disorder and obsessive-compulsive disorder, says she has experienced the problem firsthand.

Myrick is the former CEO of a non-profit group that tries to bridge these gaps by providing overnight crisis care to patients who need urgent help. These programs are few and far between.

"You go to a hospital and say, 'I'm on the verge of a breakdown.' The hospital will say, 'You're not sick enough,'" says Myrick, former president of the National Alliance on Mental Illness "I said, 'What do you mean I'm not sick enough? I'm trying not to get sick.'"

Some say the designers of the Medicaid and Medicare rules had good intentions.

Congress didn't want to pay for long hospitalizations for psychiatric patients because the goal was to move people out of big asylums and into communities, Kennedy says.

Others note that the rules serve a useful purpose today because they encourage states to focus on outpatient treatment. "They create incentives for states to serve people where they ought to be served," says Dennis Jones, the former mental health commissioner for Indiana and Texas.

In 1963, Kennedy's uncle, President John F. Kennedy, signed legislation to create a network of community mental health centers across the country.

But the nation never followed through, Manderscheid says. While many of the old hospitals have closed, the country built fewer than half of the planned 1,500 mental health centers. Hospital beds, meanwhile, have shrunk from a peak of more than 500,000 in the 1950s to just over 100,000 today.

"It's an unfulfilled promise," Glover says. "There needs to be a balance of community based-services and inpatient care."

Over the decades, Congress has relaxed Medicaid's policies somewhat, Honberg says. In the 1970s, Medicaid began paying for psychiatric hospitalizations for patients under 21. In the 1980s, it began paying for psychiatric hospitals with fewer than 16 beds.

But Congress is unlikely to completely eliminate the unequal Medicaid rules, Glover says. Paying for unlimited inpatient psychiatric hospitalizations would likely add several billion dollars to the Medicaid budget — a non-starter for many in Congress, he says.

But the Affordable Care Act is paying for a pilot study of what happens when Medicaid further relaxes its payment rules.

The $75 million study provides 11 states and the District of Columbia with federal Medicaid matching funds for people who need emergency inpatient psychiatric care. Some states offer additional services. Early results from the national pilot study, released in December, show that patients had relatively short hospital stays — an average of eight days — with few needing to be rehospitalized within the same year.

Rep. Tim Murphy: The health care system penalizes the mentally ill By denying hospital care to the mentally ill, Rep. Tim Murphy says Congress effectively tells the mentally ill they are less deserving of a decent life than others.

Murphy's bill also aims to help more people get short-term inpatient care.

His Helping Families in Mental Health Crisis Act would allow states to receive Medicaid matching payments for adult psychiatric hospitalizations, Murphy says. The bill has won support from a number of medical and mental health organizations, including the American Psychiatric Association, the American College of Emergency Physicians and the National Association of Psychiatric Health Systems.

Rep. Ron Barber, D-Ariz., also has introduced legislation to expand hospital care. His bill would eliminate Medicare's 190-day lifetime limit on psychiatric hospital care.

"It's a gaping hole we've got to fill," Barber says.

Yet at a time when Congress is deeply divided -- and members are preparing for an election -- mental health advocates say the bills face an uphill battle. Even if the bills don't pass as written, Manderscheid says he hopes Congress will craft a compromise to make some progress in providing care.

Laura Pogliano of Towson, Md. has often paid out-of-pocket for the care of 22-year-old son, who has schizophrenia. He frequently has needed care that wasn't covered by insurance. Other times, he couldn't wait for a public hospital bed to open up.

In less than three years, Pogliano says, she exhausted all $250,000 of her life savings. She lost her house when she chose to pay his hospital bills instead of her mortgage payments. "Every parent I know," she says, "has to fight for treatment for their child."

Some people with mental illness are fighting against stigma in surprising ways.

Canadian David Granirer, a comedian who has long suffered from depression, teaches people with mental illness to speak out through comedy. He calls his class Stand Up for Mental Health.

In the past decade, Granirer has taught comedy to 400 adults with mental illness throughout North America, both as therapy for them, as well as a way to debunk stereotypes of the mentally ill.

"How often do you hear the words 'hilarious' and 'schizophrenic' in the same sentence?" asks Granirer. "Audiences see people with labels like bipolar and schizophrenic, and see them as funny and likable and courageous."

Granirer says one of his most courageous students has been Jessica Dawson.

Dawson, 42, had never enjoyed laughter.

She was laughed at too much as a child. For much of her life, laughter sounded like mockery, and jokes felt like stones thrown by bullies. For Dawson -- who was suicidal by age 10, had a baby at 16 and was diagnosed with schizophrenia at 22 -- there often wasn't a lot to smile about. Dawson's parents and doctor hid her diagnosis from her for four years, afraid that the news would prove too upsetting.

Yet in 2006, Dawson found herself on stage, telling jokes, and getting laughs, while talking about the most painful episodes in her life – ones about which she had always been ashamed -- such as hearing voices and undergoing treatment with electroconvulsive therapy.

"Before I had electroshock, I thought I was Jesus Christ," she quipped in her act. "Afterward, I thought I was a toaster."

Learning to see her life in a new light proved to be powerfully healing, Dawson says.

"It changed my life," says Dawson, who lives in Canada's British Columbia. "Having the fantasy of being a star sort of lifts you momentarily out of thinking about how low you are on the societal scale of acceptance. . . I'm no longer buying into the shame, and I'm giving others permission not to buy into the shame."

While standup comedy isn't for everyone, the program provides an important service, Granirer says, by allowing people to see that people with mental illness aren't that different.

Mentally ill use comedy as a form of therapy People with mental illness speak out through standup comedy.

With so many people with mental illness "in the closet," the dominant image of people with mental illness has often been negative – the homeless person on the street, the deranged young man with a gun, says Patrick Corrigan, a professor of psychology at Illinois Institute of Technology.

Research shows that the most promising way to dispel stereotypes is to meet someone with mental illness face-to-face, Corrigan says. These sorts of encounters are two to three times as effective as educational programs.

"The way we've diminished the stigma of being gay is by having brave men and women come out," Corrigan says. "It wasn't watching anti-stigma programs in middle school."

Few public figures with mental illness today speak about it openly.

Football player Brandon Marshall, a wide receiver for the Chicago Bears, is an exception. Marshall, 30, was diagnosed with borderline personality disorder, which can cause mood swings and emotional outbursts, in 2010.

Marshall says he decided to speak up to help dispel the stigma around mental illness.

"So many people are trying to hide something that needs to be talked about, and if it's talked about, so many lives will be saved," says Marshall, who created the Brandon Marshall Foundation to help others with mental illness. "Where we are at is where the cancer community and HIV community were 25 years ago."

While Marshall says he has taken some flack for speaking out -- including trash talk on the football field -- he says the positive responses have outnumbered the negative.

"The good part has been having a platform to help people," Marshall says. "One out of four of us are suffering from something."

Marshall says learning from other people with mental illness has given him hope. "You can get better," Marshall says. "There is light at the end of the tunnel."

Hakeem Rahim, who has bipolar disorder, once felt he had to hide his condition, which surfaced when he was a freshman at Harvard University. Instead of calling in sick when he was having a tough day emotionally, he would tell his employer that he had the flu. Eventually, he just didn't feel comfortable hiding his diagnosis.

Rahim now works full-time giving educational talks, mostly about mental illness. A woman called him after seeing him speak at a college, confiding that she was suicidal. Rahim, 33, was able to find her help.

"These stories are so important," says Rahim, who says that surveys conducted after his talks suggest that audience members were more willing to talk to others if they felt depressed or anxious. "Part of my goal is to share what I learned. Hopefully, if they learn it earlier, they can get help sooner."

Hakeem Rahim on his bipolar disorder: I felt I had to hide Hakeem Rahim hid his bipolar disorder for years before finally sharing his diagnosis. He now works full-time giving educational talks, mostly about mental illness.

Research suggests the country has made fitful progress in fighting stigma.

Large national surveys conducted in 1996 and 2006 found that Americans increasingly understand mental illness to be a biological condition, rather than a moral failing. And the study found Americans have become more accepting of people with depression.

Over the same period, however, Americans grew less willing over time to befriend or work with someone with schizophrenia, and more inclined to see people with the disease as violent and dangerous. Researchers have not conducted more recent surveys.

It's likely that Americans' attitudes toward serious mental illness have only hardened since the shootings at Virginia Tech, Newtown, Conn. and Santa Barbara, Calif., says psychiatrist E. Fuller Torrey, founder of the Treatment Advocacy Center, which focuses on patients with severe mental illness.

A 2012 study found doctors less likely to prescribe medications for heart disease and other ailments to people with mental illness. Other studies have found that doctors are less likely to recommend surgery after a heart attack for people with mental illness, or hospitalize them after an emergency department visit for diabetes.

Dawson says she no longer feels the need to hide her diagnosis.

At one time, she was afraid to even ride the bus, because she worried that other passengers could tell she had schizophrenia. After taking the stand-up class, she learned to joke with people on the bus, defusing her fears.

Dawson says she wishes that story had a happier ending. She's largely home-bound today, unable to take public transportation or even leave the house, due to rheumatoid arthritis that makes it difficult to walk. Although she has a wheelchair, her apartment complex won't allow her to install a ramp. Dawson says can't afford to move to a more accessible apartment.

Yet Dawson says she remains forever changed by her experience onstage, which gave her the confidence to write to local politicians about important issues, take college classes for the first time and respond to online bullies who make fun of those with mental illness.

As for her childhood tormentors, Dawson says, "All those people who said I had no sense of humor? They were wrong."