Intensive Behavior Team Sets Foundation for Proactive Treatment
For families with neurodivergent children, clinical care is rarely straightforward. Tasks such as blood draws, giving medication, and managing post-surgery recovery can present significant challenges for both the care team and the patient’s family.
“Everything—from noise, type of space, number of people, and lack of structure and routine—can be very stressful and anxiety-inducing for neurodivergent children,” said Amanda Laprime, PhD, associate professor of Pediatrics and Medicine in the divisions of Transitional Care Medicine and Developmental and Behavioral Pediatrics.
Laprime directs the Intensive Behavior Team, a UR Medicine-wide behavioral consultation service for patients with neurodevelopmental disorders across medicine, pediatrics, and psychiatry. Her research and clinical focus centers on treating severe behavior, promoting health equity in medical settings, and implementing system-wide approaches to serve patients with complex needs.
“The goal of the Intensive Behavior Team is to proactively understand families’ needs, reassure them that they’re not alone, minimize trauma and restraints, and ensure that someone on the care team truly understands disabilities and positive behavior supports,” said Laprime.
The team was developed in response to the challenges children with intellectual and developmental disabilities (IDD) face in clinical environments. While developmental and behavioral pediatrics (DBP) clinics are often optimized for children with IDD, many non-DBP outpatient and inpatient settings present sensory overload risks.
“Our providers in both DBP and complex care, who see patients with complex IDD, recognized that while we had a robust outpatient service, inpatient access was challenging. The environment itself was difficult for families and patients, and many struggled just to be there, impacting their ability to receive care,” Laprime explained.
Established in 2020, the Intensive Behavior Team has grown significantly. In 2021, the team introduced Sensory Carts for patients with IDD at GCH, stocked with items like weighted blankets, handheld puzzles, magnetic tiles, and beanbag chairs. The carts quickly became popular among parents and children with sensory needs.
Since then, the team has expanded to include five licensed behavior analysts and two registered behavior techs, enhancing its ability to consult with families before both inpatient and outpatient visits to create care plans that prioritize comfort and minimize disruption.
Families now benefit from the Intensive Behavior Team’s support in various scenarios, from its assistance with post-surgery recovery to managing inpatient EEGs. Although coordinating with families in advance is standard, the team is also called in to help when issues arise during treatment.
Parent Venisha Bennings benefited from the Intensive Behavior Team’s support firsthand. When her daughter Aubrianna—who is diagnosed with autism—struggled to recover from a tonsillectomy in August, Laprime intervened to guide her recovery.
“We followed all the post-surgery instructions, but she resisted taking and holding down her medicine, was in severe pain, had lost six pounds, and wasn’t sleeping,” Venisha shared. “She was eventually readmitted, but the overall situation wasn’t improving, and she had to be restrained for IV fluids and other treatments.”
Laprime and her team provided crucial support, offering guidance for Aubrianna and specific instructions to the care team–including nurses, doctors, and support staff—on how to reintroduce food and drinks, understand Aubrianna’s medical trauma, and ensure a therapeutic environment that would help her progress medically.
“Amanda listened and became an instant friend to my child,” said Venisha. “She and her team worked to redirect Aubrianna, helping her take her medicine, and trained the care team with detailed written instructions.” Aubrianna has now fully recovered from the tonsillectomy and is doing well at home.
The Intensive Behavior Team’s work is also augmented by a new, large-scale teaching initiative for caregivers of neurodiverse patients: A five-year, $1.5 million grant from the NYS Developmental Disabilities Planning Council (DDPC) is funding training for acute-care nurses in the Division of Transitional Care Medicine, in collaboration with the University Center for Excellence in Developmental Disabilities (UCEDD). This training equips nurses to understand the healthcare needs of children with IDD, navigate communication barriers, and better support patients with dual diagnoses across the lifespan.
Launched at URMC in spring 2023, the nurse trainings—led by Laprime and Dr. Suzannah Iadarola—are set to expand to a minimum of 10 additional hospitals over the next five years. Developed collaboratively with nurses, educators, families, and self-advocates, the training includes classroom sessions, simulations, and in-person pairings with individuals with developmental disabilities and their families.
In its initial years, the program aims to incorporate feedback from caregivers and the community to continuously improve. Additional support from the Golisano Institute could further extend the program’s impact.
“We look forward to a future where nursing staff are well-equipped to communicate with children with IDD; are creating safe, effective treatment plans in collaboration with the Intensive Behavior Team; and are making meaningful, sustained progress with the Golisano Institute’s potential support,” Laprime said.
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