Each Monday morning a team of psychiatrists, psychologists, behavioral specialists, social workers, and nurses at University of Iowa Hospitals & Clinics meets to do what they often call “detective work.” Their patients, who typically have autism, intellectual disability, and severe challenging behavior, can’t always communicate what’s troubling them so it’s up to the team to investigate.

“We go through their entire history, every single piece of information we can possibly get, and we spend an hour putting all the pieces together and figuring out what would be the most appropriate clinical care for this person,” says Kelly Vinquist, PhD, BCBA, clinical assistant professor of psychiatry and co-director of the Intellectual Disability-Mental Illness (ID-MI) Program.

There are roughly 30,000 people with intellectual disability in Iowa, and half also have a mental illness. Besides autism, these conditions include mood disorders, anxiety disorders, attention-deficit hyperactivity disorder (ADHD), communicative disorders, and others. Over half of people with intellectual disability have a co-occurring psychiatric disorder, according to a 2016 report by the National Core Indicators.

The ID-MI team sees patients who also have challenging behavior; they typically have the longest stays on psychiatric inpatient units, more frequent emergency room visits, and tend to bounce from one group home to another due to their challenging behavior.  

“Our goal is to provide continuity of care and ultimately support so they can stay in their homes,” Vinquist says.   

The program, which was created two years ago, is the only one in the nation that provides continuity of care for adults with co-morbid mental illness and intellectual disability. Typically, similar programs only provide care for children and adolescents. The team’s approach includes inpatient and outpatient care, education for patients and community providers, statewide advocacy, and research.

They have decreased average length of inpatient stays from 98 to 26 days, and insurance denial rates have dropped from 31 percent to zero. On top of that, patients are taking fewer psychiatric medications and their challenging behaviors are decreasing overall during the treatment course. The care team works diligently to find the most appropriate psychiatric diagnoses and review other medical and environmental factors that may lead to challenging behavior for these patients.

With this momentum, the group hopes to reach even more adult patients through a telehealth partnership with the statewide Child Health Specialty Clinics. Virtual visits started in January with patients in Sioux City, with the goal of expanding to more locations in western and northern Iowa. This approach is especially helpful for patients with significant behavioral needs, as it’s often unsafe for them to travel in a car for hours.

Adulthood uncertainties

The Child Health Specialty Clinics serve children and teens with special needs up to the age of 18, but there’s a lot of unpredictability during the transition to adulthood. Young adults face adjusting to a new doctor, but many adult providers are unfamiliar with their patients’ developmental needs. Jodi Tate, MD (00R), professor of psychiatry and co-director of the ID-MI program, says this discrepancy is rooted in a lack of training for adult providers.

“When kids with special needs transition out of school, all the services pretty much drop off,” she says. “It’s a nationwide problem. Our program will hopefully help with this transition period to get them more stabilized.”

Tate herself didn’t receive the necessary training in medical school or during her residency.

“When I went into practice and started seeing patients with co-morbid intellectual disability and mental illness, I found that I really enjoyed working with these individuals. They made me feel happy. So I started reading and I taught myself.”

She has since developed training for resident physicians, and Desiré Christensen (16MD), a resident in the UI adult psychiatry program, is developing a curriculum for the UI Carver College of Medicine. The ID-MI team also helps other local providers and travels the state to train in-home caregivers.

“We always come back to the fact that these individuals deserve but often don’t receive comprehensive care,” Vinquist says. “Sometimes all it takes is us helping each other figure out how to do this.”