In South Dakota, for example, not a single residential treatment program in the entire state

Part 4 of Deadly Denials, a four-part series supported by the Pulitzer Center.

See yesterday’s story: Eating Disorders: They Don’t Just Happen to Skinny, White Affluent Girls

Geography doesnʻt seem like it should play a role in the landscape of eating disorders treatment, but in fact families and patients seeking rural mental health in small towns and cities and less populated states have far less recourse when it comes to treatment options than those on the east and west coasts and big cities in between — especially when it comes to eating disorders.

Thatʻs the reality Sioux Falls, South Dakota, residents Todd and Kimberly Peterson faced in 2019 trying to get help for their daughter Brittany, who was diagnosed with anorexia at 13. (MindSite News has changed their names to protect their confidentiality at their request.)

“Sioux Falls has about 250,000 people, and at that time there was just one person we could find that was seeing patients with eating disorder issues,” Todd said. Working with that therapist, they put a family-based treatment plan into action, but Brittany lost weight rapidly over the next few months.

“At that point, the therapist recommended doing inpatient hospitalization or residential treatment, and she was pretty serious about it,” said Todd. “She said if we don’t do this, she was afraid Brittany might not make it through.”

That was when the Petersons discovered that there wasnʻt a single residential treatment center in the entire state. After an extended search, they found a placement in Chicago, a nine-hour drive away. The distance became even more problematic when Brittany was stepped down to partial hospitalization (PHP), requiring Kimberly to take a leave of absence and find an apartment in Chicago while Todd remained in Sioux Falls caring for the coupleʻs other two children.

“What a hard time of life to be completely isolated only because you don’t have treatment in your own hometown,” Kimberly said “She was so young to be so far from home. It was really hard on her.”

“It’s a tragedy how we’re not serving our farmers, our rural communities.”

—FAITH CARLSON, THERAPIST AND EATING DISORDER SPECIALIST

The dearth of local treatment options again came into play again when Brittany completed outpatient treatment and returned home four months later.

“She was still actively battling her eating disorder all of that next year and she didn’t have a group that she could go to here, whereas in Chicago she had gotten so much peace and comfort from having other girls who knew what she was going through,” said Kimberly. “And we as parents had no support group.”

Desperately seeking rural mental health services

Research conducted by the EAT Lab at the University of Louisville and Project HEAL shows that the Pettersonsʻ experience is not uncommon. A survey of eating disorder patients between January 2021 and June 2022 found that 34% of eating disorder patients were unable to find a treatment provider nearby, while 19% had no treatment centers available in-state. It’s even harder for patients insured through Medicaid.

“In Kentucky, if you have Medicaid, you are just out of luck. There are no residential centers or inpatient centers in the country that will take Kentucky Medicaid,” said Cheri Levinson, director of the EAT Lab and a founder of the Louisville Center for Eating Disorders.

Her clinic provides intensive outpatient and partial hospital programming but not inpatient. “When I have adolescents who need residential (care) and they’re on Kentucky Medicaid, I have literally nowhere that I can send them in the entire United States,” Levinson said.

“It’s a tragedy how we’re not serving our farmers, our rural communities,” said Faith Carlson, who became Brittany’s therapist and then opened her own disorders treatment practice, Victus Recovery, in Sioux Falls.

With a background in nonprofits and community clinics, Carlson was determined to take Medicare and Medicaid when she set up her clinic.  “Our Native American populations on our reservations have zero coverage, none. Thereʻs nobody helping, no access to resources. This is an untouched population and it’s alarming.”

“I went through the process of becoming approved, and then I submitted the claims for six months, and not one of my claims got reimbursed,” she said. “I wasn’t going to send these patients to collections. I wasn’t going to ask for money from people who are already struggling. So I had to make the very hard decision to stop accepting public insurance in order to build my business and keep the clinic open.”

In a written statement, Chris Bond, a spokesperson for America’s Health Insurance Plans (AHIP), an insurance trade association, noted that health plans follow the latest guidelines on reimbursement.

“Data on denials rarely take into account the overwhelming number of claims that are submitted from doctors that have extensive gaps in the accuracy and completeness of information provided, meaning health plans are regularly having to follow up to confirm correct billing and diagnostic codes” as well as proper treatment, he wrote.

In addition, Bond wrote that states, employers, and federal regulators “ultimately have an outsized and often final say on what benefits are included for consumers…Every aspect of insurance is regulated or reviewed by state insurance commissioners and federal regulators.”

 

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Select References

Penwell TE, Bedard SP, Eyre R, Levinson CA. Eating Disorder Treatment Access in the United States: Perceived Inequities Among Treatment Seekers. Psychiatric Services. 2024;75(10):944-952.doi:10.1176/appi.ps.20230193

Timothy Walsh et al, A Systematic Review Comparing Atypical Anorexia Nervosa and Anorexia Nervosa, International Journal of Eating Disorders, August 2022

Bowman Family Foundation, Equitable Access to Mental Health and Substance Use Care: An Urgent Need, a Patient Experience Survey, July 2023, Conducted by NORC, University of Chicago

RTI International, Behavioral Health Parity – Pervasive Disparities in Access to In-Network Care Continue,  Tami Mark, William Parish, April 17, 2024

Disparities in Access to Eating Disorders Treatment for Publicly-Insured Youth and Youth of Color, a Retrospective Cohort Study, Marissa Raymond-Flesch, UCSF corresponding author Ruby Moreno, Sara Buckelew et al, Journal of Eating Disorders, 2023

HealthCare Insights, Mental Health Utilization Trends, LexisNexis, 2023 (data compared 2019-2023)