Spending time in the hospital can be challenging for all kids and their families. This can be especially true for youth with neurodevelopmental disabilities, including autism.
Some challenges arise because of the environment itself. Hospitals are known for bright lights, loud noises, and constant activity compared to home. On top of pain/illness and sensory factors, kids in the hospital are also disconnected from their predictable routines, favorite interests, and school support.
Unfortunately, most physicians, nurses, and other healthcare professionals receive almost no instruction on autism and other developmental disabilities during their training.
Recognizing these gaps, Children’s Mercy and UMKC School of Medicine received funding from the Academy of Developmental Medicine and Dentistry to join the National Inclusive Curriculum for Health Education (NICHE) initiative in 2019. Until then, UMKC’s curriculum (like most medical schools) included no formal experiences focused on medical care for patients with intellectual and developmental disabilities (IDDs).
“Every BA-MD student rotates through Children’s Mercy, and now they are guaranteed to get this foundational exposure,” said Paige McArdle, PhD, a clinical psychologist and one of the faculty members who staff the program. The program pairs behavioral health and medical faculty with autistic self-advocates, parents, and community practitioners to allow students to ask questions and de-bunk misconceptions.
“We want future physicians—regardless of what specialty areas they pursue—to appreciate their roles in serving people with disabilities,” said Grace Winningham, MD, a developmental-behavioral pediatrician and program faculty member. “There are so many disparities in care access just because providers lack experience or comfort. We’re excited that the next generation of doctors will be better prepared.”
Children’s Mercy is also actively expanding in-house support for youth with autism and other behavioral and developmental differences. This has taken the form of rapid quality improvement initiatives focused on reducing the use of pharmacological and physical restraints to improve patient safety (as well as increasing safety for staff) and expanding the behavioral health workforce. Alec Bernstein, PhD, BCBA-D, and Rebecca Ebbers, BCBA joined the hospital in 2022 as the first board-certified behavior analysts dedicated to inpatient care at Children’s Mercy. Expansion of autism and neurodevelopmental supports will continue through the hospital’s long-term mental health strategic plan.
Three years of COVID-19 disruptions have only magnified challenges in accessing care for youth with autism and neurodevelopmental disabilities.
“Telehealth isn’t the only solution, but it has still been a game-changer,” said Cy Nadler, PhD, who directs the Children’s Mercy Autism Clinic and researches autism and health outcomes. Clinical advances in telehealth diagnostics and remote caregiver coaching have opened opportunities. As a site Co-PI in Missouri for the CDC-funded Study to Explore Early Development, Nadler is also examining the experience of youth on the spectrum and their families during the pandemic.
“We’ve seen incredible resilience, but many challenges too,” said Nadler. “I’m hopeful that tailored training and better-prepared healthcare systems will mean better quality of life for kids and their families.”
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