South Dakota's Invisible Crisis: Regional care centers not serving most kids

Patrick Anderson
Argus Leader
DJ Hilfers, 14, holds his cat Shadow Monday, May 15, 2017, at their home in Sioux Falls. Hilfers said he has a special bond with Shadow. "He just makes me happy," he said. DJ, who suffers from mild depression, attention deficit disorder and anxiety, has gone for months without a counselor. He's been waiting for one ever since Southeastern told his family they would come up with a replacement for the therapist he had last, who he didn't like.

D.J. Hilfers’ coping mechanism has four legs.

A black cat rests in the arms of the chatty 14-year-old as he talks about his battles with anxiety, attention deficit disorder and mild depression.

Shadow is more than a companion.

“When I get nervous or something, I just play with the cat,” D.J. said.

D.J. is among thousands of young South Dakotans who qualify for mental health care from state-funded centers but are not getting counseling from the network of 11 regional nonprofits set up to serve them.

It's a gap that was identified 15 years ago by a legislative task force. The numbers haven't changed in the decade and a half since. The regional network reached 5,010 kids in 2001, and after years of population growth saw just 5,005 kids in 2016. 

First in an occasional series exploring adolescent mental health care in South Dakota.

►More: How to find mental health help in Sioux Falls

►Read: South Dakota Children's Mental Health Task Force Final Report

An expert hired by the task force estimated the number of kids who needed and qualified for treatment was more than twice the number receiving help. The system was “falling short in its ability to effectively meet the needs of children,” its report concluded. The formula used to reach that conclusion suggests the gap persists.

Administrators say the state system receives enough funding to care for all kids who come to the centers seeking help, but a persistent stigma limits reach.

"I'll never give you an idea that we're going to be fully happy with the level of service we're providing,” said Terry Dosch, executive director of the South Dakota Council of Mental Health Centers. "We're always going to strive to improve access to the people in the state of South Dakota.”

The regional system is only a piece of the treatment puzzle in South Dakota. Dosch and others say private groups and hospitals have stepped up to fill some of the gap.

But the state network's flat numbers and a shortage of beds and doctors in private facilities raises questions about South Dakota's ability to serve young people battling depression, anxiety, and other mental health conditions.

Left untreated, the disorders can derail lives, contributing to academic struggles, drug use, risky behaviors, or worse. Suicide is the second leading cause of death for youth and young adults in South Dakota. 

A rip in the seam

D.J. is among the fortunate ones. He has the support of his mom and sister. A doctor writes his prescriptions. And he has coping mechanisms learned over the years.

He'll be a freshman at Roosevelt High School this fall and said he's ready for the challenge. But he might not have a therapist to talk to if anxiety takes over.

Years ago he started seeing a counselor through Southeastern Behavioral Healthcare, the regional center in Sioux Falls. After his old counselor left, he didn't feel as comfortable with her replacement and his mother requested someone new.

"It was very good for me, and then it just..." D.J. said, trailing off.

DJ Hilfers, 14, plays with his cat Shadow while watching one of his favorite television shows, "Chicago Fire" Monday, May 15, 2017, at their home in Sioux Falls. Hilfers said he has a special bond with Shadow. "He just makes me happy," he said. DJ, who suffers from mild depression, attention deficit disorder and anxiety, has gone for months without a counselor. He's been waiting for one ever since Southeastern told his family they would come up with a replacement for the therapist he had last, who he didn't like.

It's unclear why D.J. has been left waiting. Southeastern's top official, Kris Graham, declined to comment on Hilfers' case.

Southeastern, like others in the state's network of community mental health centers, is a nonprofit but regulated and funded by the state. State law requires the centers to serve children and adults with diagnosable mental illnesses. It also requires them to provide "a seamless continuum of services" when support is needed as part of patients' recovery. 

The Hilfers and other families who receive care from the centers are supposed to get written notice 72 hours beforehand if a center refuses service. D.J.'s mom, Dawn Hilfers, said she's had no written communication about her son's counseling.

Money not a barrier

The task force that flagged South Dakota's adolescent mental health care crisis 15 years ago recommended a seven-point plan to help more kids. The group called for better coordination among agencies, improved screening in schools and daycares, a public education campaign and more money for counseling and other services.

There's little legislative record of any change. But that doesn't mean there weren't improvements made within state departments that work with children and mental health, said Amy Iversen-Pollreisz, deputy secretary of the Department of Social Services.

“The things that happened as a result didn’t require legislation,” Iversen-Pollreisz said.

State agencies made extensive plans to collaborate, identify more at-risk children and develop extra service options. One initiative trained day care operators to recognize signs of mental illness. Another called for more partnership between care providers and agencies such as the state Department of Corrections.

There was no funding measure from the Legislature that year, though money for community centers has gradually increased, especially in recent years.

Funding doesn’t limit her agency’s ability to serve Sioux Falls children, Graham said.

“We would never not provide services if a family or child needs it,” Graham said. “I think we step up to do whatever we can to help the families."

As the state's population has grown, though, the number of kids getting help has not. State mental health administrators point to elements largely beyond their control to explain the flat numbers, namely stigma and a growing role of private facilities.

The stigma effect

Mental illness is hard to talk to about, and that means there can be breaks in the chain of reporting what could be a life-threatening disease: From child to parent, or from parent to counselor.

Embarrassment and fear can inspire silence. So can skepticism.

“You never really think about your child even knowing about suicide,” said Carla Elznic, of Brandon, whose daughter Lacey lives with depression.

Lacey lost her father when she was young. Depression crept over Lacey’s psyche years later, in middle school. It was a malaise. One bad day. Then another. Then another.

“At a young age you’re not really put in a position to deal with those hard things,” Lacey said.

It was months before she told her mother. 

“We have to get people to talk about it,” said Phyllis Arends, who heads the Sioux Falls branch of the National Alliance on Mental Illness. She is trying to work with students in college and high school to be advocates for classmates.

Lacey eventually found help through Avera Behavioral Health's inpatient program.

Need for treatment

Avera has played a large role in treating young South Dakotans in crises, though its capacity for inpatient treatment has been stretched to the limit in recent years.

Avera opened its 110-bed behavioral health center in Sioux Falls in 2006. It's one of the state's few inpatient programs for children too young for the state-run psychiatric hospital. It wasn't expected to reach capacity until after 2025.

Instead, it took just a few years for Avera leaders to realize the $32 million facility didn’t have enough space to keep up with the need in the community. Demand for space in Avera’s child and adolescent wing regularly reaches capacity, especially in the fall and winter when the seasonal ebb and flow of youth mental health crises reach a peak.

“The use has been much greater than what we anticipated,” said Steve Lindquist, Avera’s assistant vice president for behavioral health.

Dawn Hilfers poses for a portrait Monday, Sept. 19, 2016, at her home in Sioux Falls. Southeastern Behavioral Health has had problems keeping counselors for Hilfers' teenage children.

Changes are underway to try to better serve kids and families in need. The state's 2015 Juvenile Justice Reinvestment Initiative set up a new type of counseling in the state called Functional Family Therapy. Instead of taking a one-on-one approach with counseling, the program requires an expert to meet with both the child and his parents. It allows providers to address outside forces, which may be worsening the child’s mental health, including drug use and family problems.

Mike Forgy, who heads the state’s community mental health center in Brookings, hopes the initiative helps prevent children from getting caught in the system.

“We’re right on the verge of being able to move in a significantly different direction with those kids,” Forgy said.

Any progress from Functional Family Therapy so far has been small and slow, but “that’s how any new initiative happens,” he said.

A while ago, it was an option that was offered to Dawn Hilfers as a way to help her young son. He's doing well, but Dawn still wants him back with a counselor.

He wasn't finished. The support just stopped.

"I know there's things that he wants to talk about," Hilfers said.

—Argus Leader Media reporters John Hult and Megan Raposa contributed to this story.

Contact us

To share your story about overcoming mental illness, contact Argus Leader Media reporter Patrick Anderson at 605-977-3936 or panderson@argusleader.com.

The gap

5,010 – the number of children helped by South Dakota’s community-based mental health centers in 2001

7,025 – the “unmet need,” or number of children who qualified for help and weren’t getting it in 2001, according to an expert hired by the South Dakota Children’s Mental Health Task Force.

5,005 – the number of children helped by the state centers in 2016

32.2 – rate of suicide among South Dakotans age 15-24 (out of 100,000) in 2015, third-highest in the U.S.

254 – rate of children in juvenile detention in South Dakota (out of 100,000) in 2015, fifth-highest in the nation.