AAP Voices Blog

As a developmental and behavioral pediatrician, I have the incredible privilege of working behind-the-scenes during this time, engaging and partnering with families experiencing unprecedented disruptions to needed routines, therapeutic educational and community-based interventions, and self-care supports.

I am so grateful that families have opened their homes to us (virtually), allowing us to see, experience and understand the ups and downs of their lives in new ways.

I have the incredible privilege of working as part of an amazing team at the University of Rochester’s Golisano Children's Hospital in the Division of Developmental and Behavioral Pediatrics. The team has stepped up to provide innovative, sustained care to individuals with disabilities and their families.

Since March 16, our interdisciplinary DBP clinical team has completed countless phone calls and 1,500+ telemedicine visits — new evaluations, follow-ups, crisis support, feeding therapy and other behavioral interventions.

Our research team has worked creatively to develop community resources and has shifted activities to keep studies moving forward despite the pause in seeing subjects in person.

Our educational team has adapted to continue thoughtful virtual training experiences for trainees, including medical residents and fellows in the Leadership Education in Neurodevelopmental and Related Disabilities (LEND) program.

Our University Centers for Excellence in Developmental Disabilities (UCEDD) teams and community consultation teams have remained connected and responsive to the needs of community stakeholders. We’re collaborating, advancing initiatives and raising our advocacy voices to highlight how individuals with disabilities are affected during the COVID-19 pandemic.

For instance, we're concerned about the increased risks of coronavirus and its complications for individuals with disabilities, who already experience disparities in health care access and delivery. With visitor restrictions in most hospitals, our community has successfully advocated that children AND adults with disabilities be allowed to have one in-hospital support person with them at all times, to help oversee medical care and advocate for needs.

We’re also concerned that with school closures, our patients are not getting the therapies and educational supports that they are entitled to receive. We have been concerned by discussions to relax special education commitments, responsibilities, and regulations and our DBP community has advocated to maintain special education laws like the Individuals with Disabilities Education Act, even through this crisis.

As we think about national and regional relief efforts, educational restructuring and distance learning, we need to remember the needs of individuals with disabilities.   

I'm so grateful for each member of my DBP team and their dedicated, compassionate contributions to patient care and family well-being. We are definitely stronger together!

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*The views expressed in this article are those of the author, and not necessarily those of the American Academy of Pediatrics.