Waiting for answers: Efforts to reduce wait times for developmental evaluations

In the state of Texas, there are over 500,000 children and adults with IDD (intellectual or developmental disabilities inclusive of autism spectrum disorder (ASD), intellectual disability, and related conditions). Additionally, thousands more have learning and/or attention difficulties (ADHD, dyslexia, etc.).

Children referred to a developmental-behavioral pediatrician often wait well over a year for a developmental evaluation. This delay in assessment is even more problematic in light of evidence that has demonstrated the importance of early recognition and intervention in achieving optimal outcomes for children with developmental diagnoses such as autism or intellectual disability.

This problem is not unique to Texas. There are just over 700 board-certified developmental-behavioral pediatricians nationally (compared to nearly 3,000 pediatric cardiologists in 2021, for example) and wait times are similar for developmental pediatrics clinics nationwide. This problem does not end after childhood. In fact, even fewer physicians providing primary care for adults have received training in healthcare transition or adult care for individuals with intellectual and developmental disabilities (IDD) and autism.

The Maternal Child Health Bureau (MCHB), a branch of the Health and Resource Services Administration (HRSA), has responded to this workforce crisis by offering a select number of Developmental-Behavioral Pediatrics (DBP) Training Grants to academic medical institutions across the nation. For the first time, Baylor College of Medicine is the recipient of a DBP training grant as of July 2023.

Project directors Dr. Holly Harris, assistant professor of pediatrics in the section of developmental and behavioral pediatrics, and Dr. Jordan Kemere, assistant professor of internal medicine in the section of transition medicine, were awarded just over 1.3 million to be distributed over the 5-year grant cycle. The majority of the activities for the DBP Training Grant are housed at the Meyer Center for Developmental Pediatrics and Autism at Texas Children’s Hospital, in addition to the Transition Medicine Clinic at Baylor and Texas Children’s. DBP trainees and faculty also interface with the Harris Health System to provide developmental evaluations to children at the Pasadena Pediatric and Adolescent Health Center.

The grant objectives are to train the next generation of leaders in DBP, to provide continuing education and technical assistance to providers and agencies caring for individuals with IDD/autism, and ultimately increase access to care.

This funding will allow Baylor to expand its DBP Fellowship program by increasing the number of incoming trainees and by facilitating more robust recruitment activities. The funding also supports a novel one-year Transition Lifespan Fellowship, a nationally unique offering that trains a physician specifically in healthcare transition and lifespan care for individuals with IDD and autism, a priority within the Autism Cares Act of 2019 and HRSA/MCHB’s Blueprint for change.

Along with training subspecialists, the grant funding also supports a unique training opportunity for primary care pediatricians (PCPs) interested in honing their skills in developmental assessment. This training enables a pediatrician to confidently diagnose and provide appropriate recommendations for straightforward cases of developmental conditions, such as autism or intellectual disability, in the medical home. Not only are children and families able to work with a provider with whom they have had continuity of care, but they also are able to immediately access appropriate interventions without waiting for a specialist assessment. Thus far, there has been overwhelming interest in this position from primary care pediatricians across the Houston area.

The grant faculty are also planning to conduct needs assessments of local community agencies to determine how to best support individuals in the community who are providing care for individuals with IDD and autism. Surveys with underserved populations, including Spanish-speaking families and transition-aged youth, are also underway. These will allow us to understand the needs of our population better so that we can construct our educational offerings accordingly. The DBP workforce crisis will clearly take time to address, but investigators at Baylor are excited to play a part in moving the needle through education and, ultimately, increased access to care for individuals and families of individuals with IDD.

By Dr. Holly Harris, assistant professor of pediatrics, program director, developmental-behavioral pediatrics fellowship at Texas Children’s Hospital/Baylor College of Medicine and Dr. Kathryn Jordan Kemere, assistant professor of medicine – transition medicine at Baylor College of Medicine