Intermountain - Caring Solutions, Strong Families, Healthy Communities

Difficulty in Diagnosis

By ALANA LISTOE – Independent Record – 07/19/09

As difficult as it is for adults to cope with a mental illness, the obstacles are multiplied when diagnosing and treating children, especially in a large, rural and sparsely populated state like Montana.

An estimated 30,000 adolescents in Montana between the ages of 9 and 17 had a diagnosable mental health condition in 2006, with 16,500 of them experiencing a significant emotional disturbance that year. Yet the state had only 17 physicians who were board certified as child and adolescent psychiatrists, according to a 2008 Legislative Mental Health Study. These psychiatrists were located in seven cities, with none in Montana’s north central or eastern regions.

Only four cities in Montana have crisis centers, staffing and beds specifically geared toward adolescents in the midst of a mental illness breakdown. With a total of just 58 adolescent acute care beds in the Treasure State, mainly in Helena and Billings, hospitals often end up scrambling to find appropriate care.

The four in-patient residential facilities in Montana, a step down from the hospitals’ acute crisis care, often have waiting lists. Since children needing these services often can’t be sent home, almost 20 percent of those needing 24-hour placements or residential psychiatric treatments in 2006 — 142 children — were sent out of state, some as far away as Texas.

And even when they are sent to a Montana institution, it can still be hundreds of miles away from the family’s home, making it more difficult to engage adults in supporting and participating in a child’s treatment, as well as to plan for discharge and arrange for community based services.

Linda Parker of East Helena knows firsthand the pain of having a family member sent elsewhere for treatment of a mental illness. She had custody of her grandson, now 12, who was diagnosed with a range of disorders. He was sent to a facility in Anaconda, but because of the distance, she was not able to see him.

“If I had to do it over again, I’d so do it differently,” she said, quietly crying.

Removing a child from home for treatment, as well as sending them out of state, is something professionals wrestle with too. As difficult as it is on family members, it’s even more challenging for the children themselves. Sometimes, that only heightens the crisis.

“Every kid (in an in-patient or residential program) is disturbed just by the fact they are out of the home,” said Geoff Birnbaum, executive director of the Missoula-based Youth Homes.

Additional challenges

It’s not just a lack of local specialists and facilities that make it difficult to treat adolescents with mental illnesses.

As children’s brains and bodies develop, they change, and so can diagnoses. That physical development also can render ineffective some medications that previously worked.

Many medications to treat mental illnesses in children often are smaller doses of what is prescribed for adults, but researchers are finding that some of those can actually harm adolescents. About 5,670 children take psychotropic drugs in Montana; with only 17 board-certified child psychiatrists, that translates to about 4,500 adolescents relying on family doctors, nurses and therapists to manage their medications.

While they may consult with psychiatrists, they often are not as well prepared to deal with the distinct challenges posed by children struggling with a mental illness as the specialists.

Treatments aren’t cheap, with residential programs in Montana costing upward of $300 per day. Medicaid and state programs cover the costs for low-income children, but in some cases, adults are told they have to give up their parental rights in order for their child to qualify for those payments. They also may have to pay for room and board at group homes, which ranges from $30 to $40 per day.

A mental illness can be confused with common adolescent angst. Teens sometimes self-medicate with illegal drugs or alcohol, further muddying diagnoses and treatment. Sometimes they refuse to take medications because they don’t like the side effects.

And often, families resist a mental illness diagnosis, not wanting to acknowledge that their child may have an illness that could affect them for the rest of their lives. Too often that stigma in society leads to no diagnosis at all.

Kelly Newman, who has three boys under age 14 with mental illnesses, said that in her experience services have improved in recent years, but more needs to be achieved in Montana.

“We’ve been doing this for nine years and at that point it was next to impossible to get any kind of care,” she said. “We had problem after problem, and constantly had to jump through hoops.”

Just getting a diagnosis was a continual struggle for her oldest child.

“I don’t think they got it right until two or three years ago,” Newman said.

Professionals readily acknowledge that figuring out what’s going on in a child’s brain can be challenging.

“Just as children develop at different stages, a psychiatric diagnosis can have a different presentation at different developmental phases,” said Keith Foster, a child psychiatrist at Shodair Children’s Hospital in Helena. “It doesn’t mean the initial diagnosis was incorrect; it means that co-occurring illnesses happen, more than one illness a time, as well as that the systems and presentations of the symptoms change over the course of development.”

Acute care

When a child is experiencing an acute mental illness episode, they often need to be seen immediately by professionals.

Montana, the fourth-largest state in the nation, has four hospitals with facilities specifically designed for adolescents, including the Billings Clinic with up to 18 beds; Pathways in Kalispell with 14 beds; St. Patrick’s Providence Center in Missoula with six beds and Shodair Children’s Hospital in Helena with 20 beds.

Shodair is the only facility for children younger than 12.

With just four hospitals dotted across Montana, being admitted can be difficult. All of the facilities are not always available for children from their immediate communities, let alone those in need from across the state.

In some cities without acute care treatment, as is the case in Great Falls, Bozeman, or Butte, it’s typical for hospitals to transport children in an emotional crisis to other regions.

Connie Martin, spokesperson for Bozeman Deaconness Hospital, said they typically see about one or two adolescents each month in need of acute care, and they’re sent to Shodair or the Billings Clinic after being evaluated. If there are no beds available in those acute care facilities, they’re admitted at the Bozeman hospital, but kept only until they can be transported to a therapeutic environment for youths.

Like other Montana hospitals, admissions to Missoula’s Providence Center’s adolescent acute care unit typically come through the emergency room. Youths are evaluated as to whether they’re suicidal, homicidal or gravely disabled, like having hallucinations, noted Patrice Lindstrom, the intake assessment coordinator.

Often they’re flailing and fighting, much more out of control than adults.

At Providence, children needing immediate intensive care who are disruptive initially are put in a psychiatric unit with adults, Lindstrom said, adding that those are single-patient rooms and the facility is locked.

Once they’re stabilized, or if they’re not acting out physically in the emergency room, the youths go into one of Providence’s six beds in the small adolescent psych wing. Sometimes they only take four children (six is at capacity) to ensure staff isn’t overwhelmed.

Providence treats an average daily census of six to eight children, Lindstrom said.

Too frequently, Providence has to look for beds elsewhere, not just for adolescents but also for adults, Lindstrom readily acknowledged. She says space limits the number of patients admitted.

“That’s when we start to do some scrambling,” she said.

If acute care is unavailable in Helena, Billings or Kalispell, the child is sent elsewhere, often to Idaho or Wyoming. Some of those out-of-state placements are at a parent’s request, noted Bonnie Adee, head of the Children’s Mental Health Bureau in the Health Resources Division for the Department of Health and Human Services.

Helena’s Shodair is the largest adolescent acute care facility in Montana. The typical length of stay is seven to 10 days. They usually have beds available for children needing immediate care, but have had to turn people away, said Shodair spokesperson Anastasia Burton.

“Generally we have openings, except for a few days in March when we were full on the acute floor,” Burton said. “If we’re full, they get referred back to the community or to another facility that can treat them.”

Staff members in the Shodair acute care units try to make the environment warm, playful and comforting. But during a recent evening to Shodair, it was clear it is a hospital, which scared some of the patients. One child was sobbing in a tantrum, others milled around lethargically, often a side effect of medications. In the common area, a handful of elementary-aged children were glued to a movie on television while others were playing with some broken toys on the floor.

It’s not easy to be away from home, but children arrive there because parents aren’t left with any other options.

Adolescents arrive at Pathways in Kalispell, a department of Kalispell Regional Hospital, mostly through referrals from mental health professionals or the hospital emergency room. Most patients have a severe emotional disability, but some are admitted due to a chemical dependency with a mental health component.

A bed almost always is available, according to Jude Spors-Murphy, admissions coordinator for the facility. Children stay about five to seven days and then are referred for out-patient care or are admitted to a residential program.

Lyle Seavy, director of psychiatric services for the Billings Clinic, said they receive children from all over eastern Montana, as well as from throughout the state if beds aren’t available elsewhere.

“Primarily parents, social workers or law enforcement bring them here,” Seavy said, adding that many of the children from outlying areas first are evaluated at emergency rooms in the home towns, and are referred by physicians. “If they’re agitated, really suicidal or out of control, there probably is a little bit of sedation offered to them. In those cases, they’re often transported by ambulance or law enforcement officers. But some parents feel comfortable bringing them here.”

He noted that their average daily census in the children’s psychiatric unit — the only one in eastern Montana — hovers around eight patients. They typically stay for nearly five days, before being released either to their homes or to a residential treatment facility.

Seavy said they try to get children out of the hospital as quickly as possible, but added it’s “very difficult” for case workers to find rooms at residential facilities. That can be due to funding, a lack of beds or comprehensive paperwork.

“There’s the whole process of certification to go through, if the treatment is being paid for by the government, Medicaid or whatever, it has to be approved,” Seavy said. “We really push the system to get kids out of the hospital as soon as possible.

“Sitting in a psychiatric facility, for any kid, is not the best place for them to spend their time; there’s no appropriate schooling or social activities.”

Residential treatment

A step down from the acute care units are residential treatment facilities, for children who are too ill to return home but aren’t sick enough for a hospital. While this is a welcome option for some families, it’s expensive, with daily rates in the $350 to $380 range at some facilities.

In 2007, at least 2,264 Montana youths were placed in out-of-home treatment programs, with the length of stay ranging from a few weeks to “considerably longer,” noted the 2008 legislative report. Of those, 202 went to out-of-state facilities, 804 were in foster care and 517 went to group homes.

The majority of the others went to one of three residential facilities in Montana registered through the state as a Psychiatric Residential Treatment Facilities, or PRTF: Shodair, with beds for 68 youths; Acadia, with beds for 68 children; and the Yellowstone Boys and Girls Club, with space for 117 children.

Intermountain Children’s Home in Helena also is a residential treatment center with 32 beds, and like the others, accepts Medicaid. However, Intermountain is not registered as a PRTF.

All four of the facilities reported often having waiting lists, with the time varying because they can’t say when a child will be ready for release, thus freeing up a bed.

Adee added that technically, they’re not “waiting lists” because the adolescents in need of these services can’t wait. But the fact is they have to.

After three denials for residential care at a Montana facility, the child usually is placed out of state.

Adee noted that the 285 beds in Montana don’t necessarily translate into accommodating Montana children in need of care.

For financial reasons, many of those beds are filled with children from outside the Treasure State.

“It’s a business decision on the part of the facility,” Adee said. “We think we pay an adequate rate, but as a business decision some facilities take children from out of state.”

For example, last year the Billings-based Yellowstone Boys and Girls Ranch only took 24 Montana youths in its residential program. The annual report said 35 youths were from Wyoming, 34 from California, 15 from Illinois, 10 from Alaska and five from a variety of other states.

Administrators say they serve children from other states to diversify the funding sources.

The nonprofit ranch that sits on 400 acres provides psychiatric residential treatment to emotionally disturbed youth diagnosed with a mental illness who’ve arrived through other mental health services. It often has a waiting list.

Shodair’s 68 beds in its residential unit are filled about 10 percent of the time. Patients stay there anywhere from a few days to a few months.

The doors here are locked; entering requires a fingerprint scan. Children share a room with another patient. They stay here for school, eat in the cafeteria and receive treatment inside the building. They are allowed outside to play only with supervision.

Jack Casey, Shodair’s hospital administrator, said between the acute and residential care center, 95 percent of children treated in 2008 were from Montana, with 37 percent from Lewis and Clark County.

In Butte, Acadia has 68 residential beds for children 8 to 18. Ninety-five percent are from Montana and all have a serious emotional disability, said Jim McVeigh, director of business development.

If a child showed up in need of acute care, McVeigh said, they would typically be transported by ambulance to Shodair or Providence.

While the Helena-based Intermountain isn’t a state PRTF, it is a nationally recognized nonprofit specializing in a nurturing environment for children under severe emotional distress, and some diagnosed mental illnesses.

Children who have major mental illnesses, like bipolar disorder or schizophrenia, don’t do well there, according to Liz Kohlstaedt, Intermountain’s clinical director. She noted that those children need a more structured approach. They also don’t accept children in an acute stage of their mental illness.

Instead, Intermountain works proactively with children who have chronic difficulties, like attachment, abuse or neglect issues that can lead to depression, anxiety, bipolar or other disorders.

“Our care addresses underlying issues for the child and the families,” Kohlstaedt said, adding that they try to get at what’s behind a child’s disruptive behavior.

At Intermountain, children live in four cottages that house eight people. They have their own rooms, a common area for watching television and playing games, a kitchen and dining rooms. They walk to school in another building across the campus, which is also where they talk to therapists and have family meetings.

Intermountain admits children between the ages of 4 and 12, and they stay there up to two years. Its residential program serves 32 children, and 25 to 30 percent are from Montana.

Intermountain often has a waiting list for admissions. The length of time varies, since beds often only become available after another child has been successfully treated and can be released back into the community.

Less-intense needs

Montana has a wide range of other facilities and organizations to treat children with mental illnesses who need less-intense services.

Group homes are residential facilities, but often allow children to attend public schools. The state pays about $184 per day, but families typically have to make up for the room and board costs of $30 to $45 per day.

For example, Kairos Youth Services in Great Falls has a therapeutic group home for six adolescents between the ages of 10 and 18 diagnosed with severe mental illnesses but who don’t need acute care.

In Billings, Excel, Inc. has two group homes for boys between the ages of 11 and 18 who’ve been diagnosed with a severe mental disturbance and have sexual reactive issues.

AWARE Inc. is the largest children’s mental health provider in the state. Its acronym stands for Anaconda Work and Residential Enterprises, and the nonprofit offers a full range of services for youths between the ages of 4 and 18 affected by mental illness. AWARE is in eight communities statewide.

It wouldn’t turn away a 2-year-old in the need of care, but that’s pretty uncommon, according to Jeff Folsom, AWARE’s Helena office director. Their services include psychiatric care, group homes, out-patient care, school support and intense home treatment.

“We try to keep kids as close to home in their own communities,” he said.

AWARE serves only Montana children, and currently is working with about 213 youths in Helena alone and 1,000 statewide. There generally is no wait for entry-level services, such as to get a case manager, but there are waits at times for group home facilities.

Youth Homes, based in Missoula, serves 180 children annually ages 4 to 18 in its three emergency shelters, three group homes, family support program and wilderness treatment program. Nearly all children served are from Montana and are referred from youth court, mental health out-patient clinics, emergency shelters or private families.

There’s often a waiting list for services as beds become available by discharged youths.

Some situations don’t call for residential treatment. In many of Montana’s smaller towns, families may turn to their local hospitals, where doctors, nurses or therapists often administer stabilizing medications, although only doctors can prescribe them. They also have out-patient therapy.

Telemedicine also is being used to help young patients far away from psychiatrists, therapists or other established treatment programs. Doctors can have therapy sessions with patients using video cameras and flat screen monitors, so no one has to drive long distances.

But telemedicine isn’t enough to meet the need. With about 5,670 children taking psychotropic medication and only 17 child psychiatrists licensed and currently practicing in the Treasure State, that translates to about 4,500 adolescents with a mental illness relying on having medications managed by these family doctors and nurses.

School-based services are among the most popular programs for mental illness advocates, who note that this often allows a child treatment while staying at home, and that it’s also a good place to discover a child’s needs.

Intermountain, for example, has had a presence in Helena schools for the past year. The program was recently expanded to include counseling and therapy in East Helena.

“There’s always been a need,” said Dan Rispens, principal at East Valley Middle School there. “This is a program we had in place eight years ago that we lost when funding changed.”

Rispens said a significant portion of the study body will benefit from the services Intermountain will provide.

“Depression is something that goes undiagnosed in students, because the students themselves don’t know what’s going,” he said. “Having these professionals in the building will be huge.”

The 2008 legislative study noted that 1,802 children and youths with a mental illness problem were served through school-based programs.

Still, more of these types of services are needed, according to the study, which noted that they’re unevenly distributed throughout Montana, with 22 counties not having any school-based care at all.

Shodair’s Foster added that while all these services are helpful, Montanans have to look beyond the facilities and do a better job of understanding mental illness as a whole, as well as having more compassion for those who deal with disorders.

He points out how a community responds quite differently to a child with cancer verses a bipolar diagnosis. Fundraising events are often held to help pay for medical procedures or fund special trips for a cancer patient, while a child with bipolar disorder often is avoided.

Maybe by better educating the general public, he theorized, compassion and understanding will follow suit.

“Our job is instilling hope for what they can accomplish,” he said.

Reporter Alana Listoe: 447-4081 or alana.listoe@helenair.com

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