Tuesday, September 2, 2014
Audio
Photos
More from MPR
Resources

Sponsor

Recent case exposes cracks in fractured mental health system

Larger view
Vail Place in south Minneapolis is an official Community Support Program, helping people with mental illness find treatment, housing, jobs and other services. (MPR photo/Dan Olson)
A grisly killing in Burnsville early this month has renewed calls for reforming Minnesota's mental health care system. A day after he was denied admission to a hospital, a 23-year-old man diagnosed with depression, and off his medication, allegedly decapitated his stepmother with a hatchet and a knife.

Hospital officials say they told the young man to seek admission at another of the hospital's facilities, but he didn't want to go there. While the the incident is isolated and extreme, critics say it illustrates the problems with gaining access to the state's mental health care system.

Minneapolis, Minn. — Long before the Burnsville killing, people began talking about how to respond to the litany of complaints aimed at the mental health care system.

The complaints from patients and their advocates include long waits for treatment, not being believed when they describe symptoms, and confusing bureaucracies that control access to services.

Many inside the system agree -- and add their own criticisms that government and health insurance company reimbursement payments don't cover treatment costs. They also say that housing and jobs programs for people with mental illness are underfunded, and too many people still view mental illness as a character flaw rather than a disease.

The criticisms have risen to a crescendo that has caught the attention of elected officials. When Minnesota lawmakers return to the Capitol in March, they'll be asked to make reforms.

One estimate is that 5 percent of Minnesota's population -- as many as 250,000 people -- have what experts call serious and persistent mental illness. They live with depression, schizophrenia, bipolar disorder, or any one of the 15 disorders that qualify as mental illness.

FINDING SUPPORT AT VAIL PLACE

Some find help at Vail Place, a three-story house in a residential neighborhood of south Minneapolis. It's an official Community Support Program, funded with federal, state and local tax dollars.

Lynda Stewart is a frequent visitor. In a conversation during a tour of the service, Stewart talks about her bipolar disorder that developed later in life. She says medication helps her avoid the extreme mood swings that are symptoms of the disease.

"A decade of my life has basically been lost to this disorder before the diagnosis was made," Stewart says, "so even though it was late onset, it has turned everything upside down."

The staff members at Vail Place help people with mental illness thread their way through the bureaucracies that control access to treatment, housing, jobs and education.

Stewart and others say the service helps them avoid crises that can plunge them into despair, and send them to a hospital emergency room.

Alison Johnson visits several days a week. Johnson dropped out of the University of Minnesota recently when an eating disorder compounded her depression. Like many others, she used a hospital emergency room as her way into the mental health care system.

"I got to the point where I started feeling like, 'Why am I putting my family through this again?' And I didn't want to be putting them through it again," Johnson recalls. "And I started feeling like it might be better off if I wasn't here, and at that point I decided it was time to go to the hospital."

Johnson says she waited 15 hours at the hospital before being admitted for psychiatric care.

A CRITICAL SHORTAGE OF BEDS

Some people with mental illness need hospitalization. But many argue that a trip to the emergency room for psychiatric care is a sign the mental health care system is broken. They insist there should have been a diagnosis and help long before an emergency room visit, with its long waits and bills that can spiral into thousands of dollars.

Staff at Hennepin County Medical Center, HCMC, Minnesota's largest public hospital, care for 13,000 people a year with mental illness. Most are outpatients who don't need a hospital stay. For those who do need hospitalization, the facility has 87 beds in its psychiatric unit.

HCMC psychiatrist Dr. Janet Andrews says two years ago, those beds were full once or twice a week. So HCMC staff would call hospitals around Minnesota in search of an open bed. Now, Dr. Andrews says, they call other hospitals nearly every day because HCMC's beds are almost always filled.

"With the current state of bed availability, there are patients that can wait as long as 72 hours to be placed in an in-patient psychiatric bed," says Andrews.

Sometimes an open bed is found across town, sometimes it's 200 miles away. The ambulance trip costs as little as $1,200 if the hospital is close, as much as $6,500 if it's far away.

A clinical social worker who works in a Twin Cities hospital emergency room says the demand for psychiatric bed space pinches the entire system. She prefers her name not be used because she's not an official spokesperson for her hospital.

"We are taking up those beds that should be available for people from outstate Minnesota, so it's just a vicious cycle," she says.

Reliance on emergency room visits would decline if people with mental illness could get help sooner. But early diagnosis and help aren't always easy to get.

GOOD HELP IS HARD TO FIND

Several parents who are members of a support group agreed to talk about their experiences trying to get help for their childrens' mental illness. Some don't want their names used. They worry about being stigmatized by the community, and reaction from people caring for their children.

A Duluth area mother says hospital mental health practitioners at first blamed the family for her 16-year-old son's behavior. A year ago, he ran away from home three times in six months.

"(They said it) must have been something going on in the family, must have been a family situation. Never could get anyone to get beyond that, until he got so bad he blew," says the mother. "He was very aggressive and put himself in a very dangerous situation, crashed, and was suicidal."

Her son was eventually diagnosed with bipolar disorder. He finally got help, the mother says, but only after the county stepped in to order hospitalization and treatment.

Every day, say parents, advocates and people with mental illness, there are similar examples of long delays and bureaucratic shuffles. All are symptoms, they argue, of a mental health care system that isn't working.

Michael Scandrett works for the Minnesota Mental Health Action Group, the MMHAG. It was formed three years ago in response to calls to reform the system. Members include some of the most powerful and influential voices in Minnesota health care.

Scandrett says the group will ask lawmakers to adopt measures that speed up treatment for mental illness.

"(We need to) spot the problems earlier to give them the help they need. If we were doing that more effectively, we may not need nearly as many hospital beds as we currently have," Scandrett says.

Earlier diagnosis and treatment will be a challenge in a system that appears to be jammed.

The Duluth area parent with the bipolar son who ran away from home says there aren't enough mental health professionals.

"I've made attempts for early intervention that just didn't happen. Couldn't get into any care facilities. I couldn't get even a psychiatrist appointment or a therapist appointment until we were absolutely at crisis," she says.

WHY ALL THE PROBLEMS?

The delays have several causes. One is that the government and health insurance companies don't pay as much for mental health care as for other medical specialties.

Minnesota Hospital Association officials say their members lose at least $200 a day on each psychiatric hospital bed.

Lower payment rates discourage hospitals and clinics from expanding, or in some cases, even offering comprehensive mental health services.

There's another ripple effect. The lower reimbursement rates also discourage people from becoming psychiatrists. The specialty requires several years of training after medical school, just like other specialists such as cardiologists. But psychiatrists often don't make as much money.

Budget cuts have taken a toll. HCMC's Dr. Janet Andrews says there isn't enough money to pay for the community services people need that would help them avoid expensive hospital stays.

"The funding has really been cut back in regard to group residences. We also have lost funding for outpatient programming, and it's just generally been drifting down," Andrews says.

County, state and federal dollars fund Minnesota's mental health care system. The amount spent has nearly doubled from 10 years ago, but the demand for services has outpaced the supply of money.

State officials say 57,000 state residents with serious and persistent mental illness get assistance -- but at least 30,000 more need the help.

More money might help. But money alone, critics say, won't solve the problems created by a fragmented system.

A FRAGMENTED SYSTEM

The MMHAG's Michael Scandrett says the current political climate in this country makes it unlikely there'll be more money to treat mental illness.

His group wants existing programs to operate more efficiently. That means creating a map of all the services, and measuring which ones get the best results.

"There are dozens of different programs. Each has its own eligibility requirements and its regulations," says Scandrett. "It becomes a maze of different programs and services people have to walk through."

The lack of money, combined with a fragmented system, creates anguish and drives up costs.

HCMC psychiatrist Dr. Eduardo Colon' says people enter the system and get help, but can easily get lost and end up back at the beginning. For some, that means a trip to the emergency room.

"We're seeing this phenomenon, I believe, because we're seeing patients discharged. They don't have a supportive environment for an extended period of time," says Colon'. "They go off their medications, they lose their insurance and they decompensate. Then we begin to back up at the front where we have to hospitalize patients. It's a lot more expensive to do that than to provide episodic care."

A map of the mental health care system might reduce confusion and help patients, Dr. Michael Trangle says, if it gets mental health practitioners talking to one another.

Dr. Trangle is a psychiatrist at Regions Hospital in St. Paul. He says people who supply mental health care operate in what he calls silos and don't always exchange information.

"I think if there's one thing the state could be doing to improve this, it would be start sharing data from county resources, state resources, private hospitals and outpatient resources -- looking at where the true biggest rate limiting steps are, and adding resources in those areas," Tangle says.

UNTANGLING THE BUREAUCRACY

The most far-reaching reform before lawmakers this session sounds like common sense, but may be the most difficult to achieve.

Money for Minnesotans getting mental health care comes from several public and private sources. The MMHAG's Michael Scandrett says more people will get better quality care, sooner, if the people in charge agree to a less confusing payment system.

However, bureaucracies controlling payments for people with mental illness can be territorial, and protective of their way of doing business.

Scandrett admits payment reform, combined with evaluating the effectiveness of services, is threatening. Some programs may get less money or disappear altogether.

"This is very challenging, and it will result in dramatic changes. It can affect the staff, affect people's jobs, affect the money that's available to different agencies. It requires a lot of hard work to make the changes," Scandrett says.

Calls for early diagnosis and treatment are a welcome prospect for people with mental illness and their advocates. But skepticism abounds, especially for parents with children who are mentally ill.

PARENTS REMAIN SKEPTICAL

Parents recount episodes where, time and again, practitioners don't take them seriously.

Janet Dalgleish is a south Minneapolis parent from the support group, whose members agreed to talk about their experiences.

Dalgleish says her teenage daughter had an episode a few years ago that had all the signs of becoming violent.

"She was raging at me, she had a knife in her hand. She was coming at me," Dalgleish recalls. "And then she turned the knife on herself, at which point I grabbed the knife from her and took her to the hospital for our first adventure."

The mother and her daughter waited at the hospital for hours. Finally, her daughter was admitted.

"But because she's extremely articulate, very cute, she was released the next day," Dalgleish says. "A week and half later we returned to the hospital. She had taken a handful of every over-the-counter medication she could find in the house. ... She was released too early the first time. I was not taken seriously. They did not recognize her rages as mental illness, but thought that they were just of a naughty child."

Dalgleish says her daughter was later diagnosed as bipolar and schizophrenic.

Parents say they routinely encounter skepticism about their children's conditions.

Jeanne Genovese of St. Paul remembers arriving at the hospital with her young daughter at 10:30 at night, and it was 3:30 in the morning before a social worker was finally able to talk to them.

Genovese says her daughter, eventually diagnosed as bipolar, was suicidal. She recalls the question the social worker put to her daughter.

"'What would you do if I told you that should go home? I bet you'd put your nice warm pajamas on and go right to sleep.' And she said, 'No, I'd go home and I'd get a knife and I'd kill myself,'" Genovese recalls.

Genovese says she made the late-night trip to the hospital to try find a secure place for her suicidal daughter.

"They need to be in a safe environment, and no matter how hard parents try we can't always make our houses completely safe for our kids," Genovese says.

Jeanne Genovese and other advocates share both optimism and skepticism over proposed fixes to the mental care system. They've witnessed plenty of attempts to make improvements that have fallen far short of expectations.

PROGRESS, EVEN WITH THE PROBLEMS

The long view is that life for people with serious and persistent mental illness has gotten measureably better. Mostly gone are the days of state hospitals where patients were warehoused, often restrained and drugged to make them more compliant.

New drugs, combined with community support, make it possible for many to live independent lives.

That's the case for Lynda Stewart and others who come to Vail Place, the Community Support Program in Minneapolis.

Stewart believes her independence and her willingness to talk about her disease help change public attitudes about mental illness, and contribute to reforms.

"I think the stigma is still there in most parts of the community. I think the best way we're going to work that is to have one-on-one conversations and friendships, so that people can see that people with mental illness really generally are pretty cool people, and like to do everything that you like to do," Stewart says.

"Right now we're just kind of planting the seeds, I hope. It'll be a few decades down before we see as much acceptance," Stewart says. "I compare it to the l960s, with racial integration. It just takes time for these things to get into a position that looks really healthy and really good for some people."

The Minnesota Mental Health Action Group presents proposed reforms to lawmakers in March, when the legislative session begins.

Sponsor