Nearly 20% of all youth have a neurodevelopmental disability (NDD)—a heterogeneous group of conditions that impact learning, speech and language, motor, social, and/or behavioral skills. NDD includes intellectual disability, autism spectrum disorder, and attention deficit-hyperactivity disorder.
In their Special Article entitled, “Healthcare for Youth with Neurodevelopmental Disabilities: A Consensus Statement,” which is being early released in Pediatrics this week, Carol Weitzman, MD, at Boston Children’s Hospital, Cy Nadler, PhD, at Children’s Mercy Kansas City, and colleagues in the Supporting Access for Everyone (SAFE) Consensus Panel note that youth with NDD have more challenges accessing healthcare and poorer health outcomes over the long term (10.1542/peds.2023-063809).
Because there are no principles of healthcare for youth with NDD, the authors and their colleagues decided to convene an interdisciplinary forum to establish principles that can be used widely.
This was an impressive undertaking, and you will want to read the details. Briefly, the authors held a public forum, to which those with clinical, research, and/or lived experience were invited. There were 40 presentations from clinicians, researchers, and caregivers. They then held a 2-day meeting, during which they used the Nominal Group Technique to organize discussion, ensure input from all participants, and develop 10 consensus statements in the 5 domains of:
- Training
- Communication
- Access and Planning
- Diversity, Equity, Inclusion, Belonging, and Anti-Ableism
- Policy and Structural Change
The overall goal was to assure that youth with NDD receive care that they understand and is individualized, equitable, and respectful.
Readers may wonder why consensus statements are needed—shouldn’t this be the standard for all patients?
Yes, it should.
However, the authors note that youth with NDD often are confronted with ableism, which they describe as “a form of discrimination that undervalues people with disabilities and assumes inferiority compared to non-disabled peers.” This type of discrimination is not generally talked about—because most people don’t even think about this.
While I recommend this entire article, if you read nothing else, you should read Table 3, “Examples of Structural Ableism in Healthcare Settings.” Nearly everyone will find an example of structural ableism—such as not having adjustable exam tables that make transfer from a wheelchair easy—in their own practice or hospital.
