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Dee Fleming tried to protect her son from the voices in his head, the ones that told him he should die.
She chased after him the night he ran toward the neighborhood church with a baseball bat in his hand. She worried to the point of exhaustion when he didn’t come home at night, then returned beat-up and missing his watch. She thought she was holding it together, if barely.
One day last April, when he was oddly quiet and confused, almost catatonic, Fleming took him to Swedish Medical Center’s emergency room and told doctors he was suicidal.
They sent him home.
Two days later, Fleming’s son downed dozens of prescription medications and household cleaning supplies, doused himself with gasoline and set himself on fire in her front yard. He lived only because a neighbor called 911 to report something smoldering on the lawn. A police officer who knew him kept him conscious until an ambulance arrived.
What came next for the Fleming family was almost as shocking, a battle for treatment that epitomizes the massive breakdown in care for mental illness in Colorado and the nation.
Doctors treated his burns, but not his mind.
Despite the family’s pleas and a months-long battle, their 37-year-old son was released from Porter Adventist Hospital to a transitional shelter.
The mental health care system is in crisis. More than 50 years after states began shuttering mental institutions, the system hasn’t recovered — leaving emergency rooms, jails and shelters as last-ditch stops to handle the most severe cases.
Each year in Colorado, about 260,000 adults and children need treatment for the most severe mental illnesses — schizophrenia, bipolar disorder, major depression and serious emotional disturbances. Yet tens of thousands go without care; nationally, only about a third of people who need treatment get it.
Colorado is paying millions of dollars to treat people with severe mental illness after their disease has escalated to the point of catastrophe instead of investing more in care when it strikes. Of the $887 million spent in Colorado on mental health in 2010 from all sources, half went to treatment of needy patients in clinics and state psychiatric hospitals. The rest was spent in prisons, jails, hospital emergency rooms and psychiatric units, and the child welfare system.
The problem isn’t as simple as limited government resources. Hospitals get more money from insurance companies by fixing physical conditions rather than mental ones, and they refer to their psychiatric units — if they have them — as charitable operations.
The fallout from this shortage in care is severe: suicides, mass shootings, a huge population of prisoners, the homeless on the streets.
“It’s the only condition for which we wait until stage 4 to try to treat,” said Moe Keller, a former state senator and now vice president of public policy for Mental Health America of Colorado. “We wouldn’t do this with cancer. If someone went to their doctor with a tumor, they wouldn’t say wait until stage 4. But they do it with mental health.”
Families struggle to find help before it’s too late, navigating a confusing health system with too few options and battling a Colorado law they say is so weak that they can’t make treatment decisions when their loved ones are too sick to realize they need help.
Attempts to strengthen that law have failed, even after violent events in Colorado have raised alarms over failures of the country’s mental health system, and even as Colorado’s suicide rate has risen to the sixth-highest in the nation.
The state ranks near the bottom in per-capita psychiatric treatment beds reported by hospitals and in the bottom half in per-capita state and federal spending on mental health.
Free to go
Dee Fleming’s son — burned so severely on his torso, arms and legs that he had to wear a skin suit — spent 10 months in University Hospital’s burn unit. His mother recalls just four psychiatric visits during that time, and when his burns no longer required hospitalization, doctors said he was free to go. He did not need inpatient psychiatric treatment for his schizoaffective disorder, they said.
Only when the Flemings hired a lawyer and threatened to sue the hospital did University Hospital administrators find their son a bed at a psychiatric center called Bridge House.
A psychiatrist there recommended a 90-day hold, diagnosing serious mental health issues that put him in danger.
But the burns were too severe for Bridge House to treat, and within days the center sent him to Porter Adventist Hospital. Porter kept him for just four days, determining he no longer needed inpatient care. The hospital released him to a temporary, assisted-living shelter for people with mental illness.
It was freezing cold in the middle of winter, and his burns were still healing. “They gave him a blanket and said goodbye,” Fleming said. “This is not humanity.”
Officials at Porter and University would not talk about the case because of privacy laws, only saying they cannot legally hold a patient who is not an imminent danger to himself or others. In other words, under Colorado law, if a person is not planning to kill himself or murder someone right now, that person does not fit the legal requirement for treatment.
The Flemings considered sending their son to a private psychiatric treatment center, without doctor’s orders and without insurance authorization. But it was $20,000 per month. Instead, they rescued him from the shelter and put him up in a hotel, then an apartment.
He has Medicaid and now receives treatment at the Mental Health Center of Denver.
“It’s too late for our family. What is done is done,” Fleming said. “But this needs to change for other families.”
Not mental breakdowns
Hospital emergency rooms are built to handle heart attacks and gunshot wounds. Not mental breakdowns.
Yet they are filled with patients having panic attacks or suicidal thoughts. People seeking mental health treatment at the ER usually are sent away with phone numbers of local therapists. The wait to see a psychiatrist in this city is about five months long. Colorado has only 15 psychiatrists per 100,000 people, compared with 92 primary care physicians.
“You can’t stabilize a mental health crisis with a Band-Aid around the head,” said Scott Glaser, executive director of the Colorado branch of the National Alliance on Mental Illness.
At University Hospital, which closed its psychiatric department six years ago, about 750 people per month — or 10 percent of visitors to the emergency department — come for mental health reasons.
Colorado law mandates that hospitals can’t turn away someone who is suicidal, homicidal or so “gravely disabled” that he can’t manage to take care of himself by finding food or shelter. But most hospitals have no place — other than an ER bed — to treat a mental health patient. Hospitals keep them until they can find a psychiatric bed at another hospital or private treatment center.
This can take hours. Or days. Or never. Colorado hospitals report fewer psychiatric hospital beds per capita than most states, according to American Hospital Association data.
Hospitals here, including University and St. Anthony’s, closed their psychiatric units because the units were losing money. One doctor called it an oxymoron to say “moneymaking psychiatric department.” The issue is that insurance companies reimburse hospitals at a higher rate for physical health care than mental health care.
The number of psychiatric beds at Colorado’s two state mental hospitals for patients whose care has been taken over by the state and those sent from state courts, in Pueblo and Denver, has slid from 611 a decade ago to 543 now.
Finding an open bed can feel like a scavenger hunt.
“It’s an order of magnitude more difficult in Colorado,” said Dr. Rich Zane, chairman of emergency medicine at University of Colorado School of Medicine, who moved to Colorado two years ago from a hospital in Boston. “An order of magnitude would be a conservative description.”
Of the 9,000 patients per year who come into University’s ER with mental health issues, just fewer than 1,000 are placed on 72-hour holds by doctors. Some spend the entire hold in an ER exam room because no psychiatric bed was found.
The majority of the 28,000 psychiatric holds in Colorado in 2012 were related to suicidal thoughts or attempts. More than 2,500 were people placed on more than one hold that year.
Mental health “parity”
The federal Affordable Care Act created “parity” for mental health care, requiring insurance companies to provide their customers the same coverage for mental health treatment as they do for other care. But the law does not affect negotiations between hospitals and insurance companies, said Ben Price, executive director of the Colorado Association of Health Plans.
Hospital officials say that despite the law, they recoup less from private insurance companies for mental care than physical care. Denver Health, for example, is reimbursed for 32 percent of mental health billing compared with 41 percent for other medical care, according to the hospital’s financial office.
Other hospitals refused to disclose that data. Experts say it’s too early to measure how the new health care law is increasing treatment for mental health patients. Community mental health clinics, however, are seeing an influx of new Medicaid patients.
“It’s pretty remarkable that insurance companies treat psychiatric care different than they treat all other care,” Zane said. “For some reason, brain failure is different than heart failure. That is one of the intrinsic prejudices against psychiatric insurance, and it’s pervasive.”
Insurance company executives said while it’s true that psychiatric care generally is reimbursed at a lower rate than surgical care, rates negotiated between hospitals and insurance companies vary widely across medical specialities.
“I do understand that we do have a psychiatric problem in this state,” said Neil Waldron, chief marketing officer for Rocky Mountain Health Plans. “But how we negotiate with the hospitals is a mutually agreed upon thing.”
Denver Health Medical Center is one of the few hospitals that has psychiatric emergency services, a secure, nine-bed section separate from the main emergency department. The unit sees 3,800 patients each year, of which about 900 are admitted. Most come for evaluation after police or ER doctors have placed them on mental health holds.
Some patients are able to leave within hours, after family meetings and help dealing with their immediate stress. Others are sent to the 36-bed, long-term psychiatric unit, where the average stay is about seven days.
Kim Nordstrom, the medical director of psychiatric emergency services, also has a law degree. Her professional degrees are at odds when she encounters a homeless person with mental illness who chooses to eat from the trash and sleep in the cold, yet has no signs of dehydration or malnutrition.
“I would not want to live that way and we don’t like to see other people live that way, but they have a right to,” Nordstrom said. She can, however, hold a patient if the person’s psychosis is interfering with the ability to make a plan to find food and shelter.
The Medical Center of Aurora — which opened a 40-bed psychiatric unit in 2012, the first one to open in the metro area in 10 years — gets patients from as far as Pueblo and Wyoming. The unit is almost always filled to capacity, which it caps at 32 because there are not enough psychiatrists to staff a unit of 40 people.
Nationally, psychiatrists are scarce, their numbers dwindling further as the profession becomes less lucrative than other specialities. In some rural parts of Colorado, there are none.
For the past 10 years, Denver psychiatrist Randy Buzan’s voice mail has said he is not accepting new patients. He already has 400. “I’m buried. I just don’t have time for all these people,” he said.
Like many psychiatrists, Buzan does not take insurance and instead charges patients on a sliding scale because that’s easier and more profitable than dealing with insurance companies. Buzan said he and some other psychiatrists avoid taking suicidal or homicidal patients because of the risks of a lawsuit if patients end up committing murder or killing themselves.
The Medical Center of Aurora built its psychiatric unit as a “community service” because emergency rooms
at all HealthOne hospitals in Colorado were warehousing patients in mental health crisis. Patients are not getting treatment before they reach crisis, and often not after leaving hospitals either, said Teresa Mayer, medical director of the psychiatric unit.
“We don’t have anywhere to send them. Imagine if you had appendicitis and there was nowhere to go for follow-up,” she said. “It’s terrible. What could have been prevented is not preventable when there is no one to care for them.”
Bottom half of states
Colorado ranks in the bottom half of states in mental health spending per capita.
The state budget to care for needy patients without insurance at 17 community mental health clinics was $40.7 million this year. That’s the same as it was in 2008, when major budget cuts took a chunk out of mental health care that has taken six years to restore. About 145,000 people per year receive therapy at the centers, spread across the state.
A study by Colorado health foundations tallied 2010 spending on all mental health treatment statewide at $887 million. Of that, slightly more than half was spent by the state office of behavioral health. The state prison system and county jails spent $93 million in taxpayer money; the child welfare system spent nearly $5 million; and hospitals spent $182 million, according to the Advancing Colorado’s Mental Health Care report.
Colorado has plans to create walk-in and mobile mental health crisis services in four regions of the state, alternatives to emergency rooms for those in immediate need and part of Gov. John Hickenlooper’s effort to increase services after the 2012 Aurora theater shooting that left 12 dead and 70 injured. Suspect James Holmes has pleaded not guilty by reason of insanity, making his mental status a focal point for trial.
Adding to the urgency was the Arapahoe High School shooting a year ago in which an 18-year-old boy with a significant history of mental problems and a pump-action shotgun murdered one of his classmates and killed himself.
The state legislature approved $20 million for the crisis centers as well as a statewide mental health hotline last year, but the project was hung up in court for several months over the fairness of the bid.
The crisis centers are welcome, but they aren’t enough, say mental health advocates, who wish the state would focus more on expanding mental health care at primary care practices.
One in four people will have a mental illness in their lifetime, most commonly depression or anxiety. One in 17 will suffer from the most serious diseases of the mind — schizophrenia, bipolar disorder, extreme paranoia.
Many in need of mental health treatment never get any.
Of the 683,000 needy and disabled Coloradans who had Medicaid government insurance last year, 93,700 received behavioral health care.
That’s about one in seven, not the expected one in four who experienced mental health problems that year.
Somewhere in the middle
The mental health system serves the extreme, even while most people with mental illness are in the middle — not needy enough to qualify for Medicaid and not willing to park their cars outside mental health clinics that serve the deep-end-of-the-pool category. It’s the new mom with postpartum depression who gets left out. The stigma attached to mental health clinics keeps people still holding it together from going there.
Community mental health clinics were not intended to care for only the neediest patients but have “become a dumping ground for the poor and underserved,” said Dr. Benjamin Miller, director of the Farley Health Policy Center at the University of Colorado School of Medicine.
The solution, say experts, is to bring mental health care into the offices of primary care doctors. Physical checkups should include mental health screenings and, if needed, a visit by a mental health professional just down the hall, said Miller, one in a group of experts on a Colorado Health Foundation panel studying the integration of mental and physical health care.
“What I want to do is normalize mental health care. Separate systems of care perpetuate that stigma,” he said. “I dispel myths quite a bit — ‘Those are the crazy people. Those are the people who shoot up our malls and kill our kids.’ ”
A 2014 study found that just 12 percent of patients who were sent to another office for mental health therapy completed treatment, compared with 77 percent of patients who were offered that care in the same exam room.
Among the best models in the country is Tennessee-based Cherokee Health Systems, a 56-clinic, federally qualified community health center that treats the underserved. Every patient is screened for depression and anxiety just as they are checked for high blood pressure, height and weight. A behavioral therapist visits each patient.
There is no referral, no recommendation the patient drive to a mental health clinic down the road.
“As soon as they think they are getting something different, we have lost that perspective that this is part of their primary care,” said Parinda Khatri, chief clinical officer at Cherokee.
Patients who saw mental health consultants in conjunction with their medical care used medical services 28 percent less during the next two years. Cherokee patients also had the lowest rates of psychiatric hospital admissions of all community health centers in Tennessee, according to data from one of the state’s largest insurance companies.
Physical and mental health care typically happen in different places in part because insurance reimburses doctors per treatment per patient, instead of a combined payment for treating a person’s whole health.
Edge of losing everything
Sue Pelletier’s voice cracks, tears streaming, when she tries to explain how she and her husband arrived at the edge of losing everything.
A few years ago, she had it all — the kind of marriage people hope for, two healthy kids, and a three-bedroom home with a pool table and a wine cellar.
Her husband, Tom, once “salesman of the year,” made enough money to keep her “spoiled” selling unique auto parts. “We were very sure of ourselves,” she said.
Until what she calls his “nervous breakdown.”
Now the Pelletiers have a for-sale sign on their Brighton lawn and $12,000 in credit card debt. They have tapped out their savings and their retirement. Tom, 61, is too depressed and anxious to work; he mostly sleeps and wakes only to take his anti-depressants and anti-anxiety pills. Everything — visits from his grandsons, picking out clothes, cooking — stresses him out.
“I don’t know how to do life anymore,” he recently told his wife.
Tom’s eyes are flat. He never smiles. “I don’t feel like I have anything to offer anybody because I’m all dried up,” he said. “I’m like an empty bucket. There is nothing that brings me joy anymore. I have to psych myself up to mow the lawn. I guess because everything seems so pointless.”
For months, Tom held back his anxiety, tried to push it down, before he “crashed.” Then he couldn’t hide it anymore. He woke his wife before dawn one morning in 1997, touched her arm and said, “I’m in trouble.” Anxiety had overtaken him to the point he could not get dressed. He kept repeating “What am I going to do?”
He had never before talked to a mental health therapist. And, on the advice of a friend who was a doctor, Sue did not take him to a mental hospital because of the stigma.
Tom could not work in sales again. Instead, he rotated through various jobs, usually in another town because it was too embarrassing for friends in Brighton to see him struggle.
He would manage for a year or more, until another episode. Tom slipped into his current episode two years ago, when Sue hospitalized him for the first time because she feared he was going to kill himself. The private psychiatric center kept him nine days. They cashed out their retirement savings.
Sue wishes now she had taken her husband to a psychiatrist or a mental health hospital during his first episode. She wishes they hadn’t tried to hide his illness for so long. She prays with him every day.
Tom feels trapped from life by his mind.
“My mind is constantly racing over negative stuff: Having to get a job. We have old cars. I’m 60 years old. What am I going to do?”
They are praying the house will sell before their next mortgage payment is due. “We just don’t know where it’s going to end or how it’s going to end,” Tom said.
Sue, now a flight attendant, worries each time she leaves for a four-day run about what she may find when she returns. She cringes thinking about how relatives have told Tom to “just buck up.”
“Well, you know what? You don’t have a clue,” she tells them. “He’s tried to buck up for years, but it keeps coming back.”
Jennifer Brown: 303-954-1593, jenbrown@denverpost.com or twitter.com/jbrowndpost
