Will Proposed ACGME Requirements Have Consequences for Kids With Autism?

— More strategic and thoughtful updates are necessary

by Sarah Ailey, PhD, RN, and Holly E. Brown, DNP, RN, PMHNP-BC, PMHCS April 21, 2023

April is Autism Acceptance Montha celebration building on efforts since 1972 to promote awareness, acceptance, and advocacy for autism inclusivity, improved opportunities, and much needed system-wide changes. In healthcare, there is a lot to be done. People with autism have shorter life expectancies and higher rates of chronic conditions than their peers without autism. Unfortunately, proposed residency training system changes may make healthcare disparities even worse in the absence of a more thoughtful approach.

The Accreditation Council for Graduate Medical Education (ACGME) recently proposed changing and reducing standards for residency training of new pediatricians in managing the healthcare of children with neurodevelopmental disorders, including autism. As the current guidelines stand, the participation of faculty with board certification in developmental-behavioral pediatrics is required for managing the teaching and clinical experiences of pediatric residents around neurodevelopmental disorders. Noting the lack of pediatricians with this board certification, and given that members of other professions also have healthcare expertise with people with autism, the ACGME is proposing to eliminate this requirement and expand the pool of professionals eligible to take on this teaching role to include a broader range of physicians as well as non-physicians, specifically psychologists and social workers.

The ACGME says the change should not affect patient care. While we’re supportive of expanding the pool of qualified experts to provide training related to the care of kids with neurodevelopmental disorders, we’re concerned that ACGME has not thought through a strategic approach to best leveraging a faculty with more diverse expertise.

The Case for Expanding the Qualified Faculty Pool

The healthcare system for care of children and adolescents is in crisis, with the shortage of board-certified developmental pediatricians being one symptom.

By the age of 8 years, one in 36 children are identified as having an autism spectrum disorder, one of the most well-known types of neurodevelopmental disorders. Yet, despite the fact that the American Academy of Pediatrics recommends developmental screening, these rates are probably underreported due to inconsistent or inadequate screening. Following screenings, there are problems with referrals. Children with autism already are less likely to have comprehensive healthcare than their peers without autism, with access and conditions varying by race and ethnicity. Teens with autism receive healthcare transition services half as often as those with other special healthcare needs, leading to many not receiving appropriate health services as adults. The lack of comprehensive services is especially concerning given that children with autism have high rates of chronic conditions such as epilepsy, gastrointestinal problems, and sleep disorders, among others, with even more if they have other neurodevelopmental disorders.

Providers know their skills to treat this population are lacking. A survey from Kaiser Permanente in Northern California found that 77% of providers thought that their knowledge and skills were only poor to fair in being able to provide care to people with autism. In another surveyonly 56.5% of physicians strongly agreed they would welcome people with disabilities (including neurodevelopmental disabilities) into their practices. Notably, the ACGME is aware of complaints that medical professional education, training, and residencies do not prepare physicians to address the healthcare needs of people with disabilities.

Building on ACGME’s Proposal

Some advocates are concerned the new ACGME recommendations will mean pediatric residents are even less prepared to provide care to children with neurodevelopmental disorders and that quality control in training in this area will be lost. But this doesn’t necessarily have to be the case.

We agree with the ACGME in that more experts, beyond only physicians with board certification in developmental-behavioral pediatrics, are qualified to care for children with neurodevelopmental disorders. But in order for a more diverse pool of experts to provide effective and consistent training, there must be higher standards for interprofessional collaborative practice and team-based care. The Association of American Medical Colleges (AAMC) is committed to interprofessional learning experiences in medical school to prepare physicians for team-based care, but in residency training ongoing reinforcement of interprofessional learning for team-based care and interprofessional teaching is lacking.

The new ACGME recommendations do not incorporate the importance of interprofessional teaching and do not leverage existing interprofessional expertise in a way that provides consistency and quality control in training across the country. Furthermore, why only include psychologists and social workers as the suggestions for qualified non-physicians? There is a wider breadth of professionals with expertise in the care of children with neurodevelopmental disorders. Why not also include advanced practice nurses (such as nurse practitioners in primary and mental health care and clinical nurse specialists), physician assistants, occupational, physical, and speech therapists, and others?

The ACGME could also propose incorporating the ECHO model to build virtual communities of interprofessional specialists sharing their expertise and providing support for learning. The ECHO model was developed based on experiences in medical residency training and has been used to inform practice in primary care. This can help address the need for high-quality, consistent pediatric residency training in neurodevelopmental disorders.

Our suggested strategies to improve interprofessional teaching would improve standards, quality control, and consistency in the education and training of health professionals in the care of people with neurodevelopmental disorders. The ACGME is moving in the right direction in expanding the pool of qualified experts, but we want to ensure the standards are not reduced, but rather, enhanced.

Sarah Ailey, PhD, RN, is a professor of nursing at Rush University in Chicago. She is the principal investigator for the PATH-PWIDD (Partnering to Transform Health Outcomes with Persons with Intellectual and Developmental Disabilities) program funded by the Administration for Community Living. She is also the mother of an adult son with intellectual disabilities. Holly E. Brown, DNP, RN, PMHNP-BC, PMHCS, is an associate professor of nursing at St. John Fisher University, associate director of the Golisano Institute for Developmental Disability Nursing, and a senior psychiatric nurse practitioner at Hillside in Rochester, New York.