Neurologists have established a new section at the AAN to help provide resources and training to support the needs of children, and adolescents with intellectual and developmental disabilities to transition as they transition to adult care. Here, Seth M. Keller, MD, and Bhooma Aravamuthan, MD, DPhil, discuss the section's plans, priorities, and progress.

Babies, children, and adolescents with intellectual and developmental disabilities (IDDs) related to conditions such as epilepsy, cerebral palsy, and autism commonly receive care from pediatric neurologists. When these individuals reach adulthood, however, adult neurology has generally been ill-equipped to provide the appropriate care for them.

"Historically, these individuals often did not live long enough to reach adulthood, which is part of the reason for a lack of focus on people with IDDs in adult neurology", said Seth M. Keller, MD, a neurologist in private practice with Neurology Associates of South Jersey, past president of American Academy of Developmental Medicine and Dentistry (AADMD), copresident of the National Task Group on Intellectual Disabilities and Dementia Practices (NTG) and chair of the AAN's new section for Adults with Intellectual and Developmental Disabilities. " Today, people with IDDs and neurologic complications are living well into adulthood, but adult neurology hasn't caught up with them."

That's the impetus behind the creation of the new AAN Section, which focuses on the need for neurologist-centered care for adults with these disabilities.

Dr. Keller and section Vice Chair Bhooma Aravamuthan, MD, DPhil, assistant professor of neurology in the division of pediatric neurology at Washington University in St. Louis, spoke to Neurology Today about their section's plans, priorities, and progress. Their comments are edited and excerpted below.

What are some of the key problems facing this population and what should neurologists be doing to address them? 

Dr. Keller: Adults with IDDs are often marginalized and face enormous health disparities. We are thrilled that the AAN has put a focus, within many constructs, on the issues about equity of care across different populations, and we want to ensure that this population is included as well in any AAN conversation about diversity and reducing health disparities. They are not getting adequate services right now. The challenge of people with IDDs from a cultural standpoint is that they are almost not thought of as equal citizens. We want to be at the table and lend them a voice. We have to speak for them from a professional standpoint as family and parent organizations have done for their loved ones. The AAN is finding its footing on these issues and we want to be there with them, reminding our colleagues that these people matter as well as the people that support them. A lot of attention is paid to children with special needs, but when people grow up and become adults, they may not necessarily have family advocates. They may be in group home care, which has its own challenges. They may have aging family member caregivers. We and our colleagues in adult neurology have to not only understand the diseases themselves, their genetics and related care practices, but we also have to deeply appreciate the psychosocial dynamics around these individuals and their care practices, and what their own viewpoints are about their care.

How would you sum up the mission of the section?

Dr. Keller: We want to become the go-to group of providers within the AAN who will be creating best practices for training and experience for neurologists who want to provide care for adults with intellectual disabilities. We have been working in partnership with pediatric neurologists, in particular the Child Neurology Foundation and the AADMD, to lay out the basics of training required for medical school students and neurology residency pro grams to instill an awareness of what caring for this patient population entails. There is also a need for continuing medical education for neurologists already in practice.

What specific plans and goals do you have for advancing that mission? 

Dr. Aravamuthan: We're currently attacking the problem in two ways, through advocacy and education, and ultimately a third arm of our efforts will be research. In terms of advocacy, I'm very passionate about advocacy by publication. We have published a number of papers recently, including an article in April 2021 in Neurology Clinical Practice on caring for individuals with intellectual and developmental disabili ties in the COVID-19 crisis which was received quite well. We also have a systematic review on the need for ongoing neurologic care for adults with cerebral palsy in Annals of Neurology in May. We have also been involved in legislative advocacy. We're grateful to the AAN for letting us speak at the American Brain Coalition Congressional Neuroscience Caucus in March 2021, where we advocated for increased funding for this population. While the session was aimed at an audience of members of Congress and their staff, we have heard a lot of responses from other neurologists who tuned in and wanted to learn more about this population, which is gratifying.

You have also been involved in arts-based advocacy efforts for adults with IDDs. What does that entail? 

Dr. Keller: There's a stereotypic way that health care providers learn about people with specific diseases. We have all seen those black and white pictures of a person standing against a board with a black strip over their eyes for privacy, showing whatever clinical aspect of their condition the image is meant to depict. We see that in textbooks even today. It doesn't provide images of someone with one of these conditions as a person with value. An award-winning photographer named Rick Guidotti turned his lens from fashion photography to see the beauty and differences in disability after meeting a beautiful young woman with albinism in 1997. He created a medical education initiative called Faces Redefining the Art of Medical Education (FRAME), which involves short video vignettes of people with specific disabilities who speak to the camera about themselves and their lives. It's designed to teach health care providers about caring for these individuals as people, not a disease state. Project FRAME is currently working on three new videos centered on areas we need to address in neurology. The first focuses on epilepsy in adults with IDDs. Project FRAME will be interviewing them about important issues related to their syndrome, how they view themselves and how they are treated, and what they would like doctors to know. The second is on aging and early-onset Alzheimer's in people with Down syndrome. The third is on supported decision-making and how to communicate with adults with IDDs on how decisions are made about their care. We are looking to work with the AAN to consider opportunities for Rick to share these photos and videos at an upcoming AAN Annual Meeting, to illustrate the humanity and beauty of these people.

What are you working on in terms of education?

Dr. Aravamuthan: Right now, we are developing trainee surveys to understand exactly what the gaps are in education about adults with IDDs and how we can address them. In addition, we're conducting a rigorous review of the literature aimed at identifying the gaps in our knowledge of how people with IDDs need to be cared for. 

We are also developing case-based studies for practitioners of all stages who are already in the field. Another effort will involve developing a webinar series through our partner organization, the AADMD, focusing on the needs of adults with IDDs in specific domains such as epilepsy and movement disorders.

Dr. Keller: Our section now has at least 245 members, and a group of us holds monthly planning Zoom calls. We have a growing number of dedicated neurologists and pediatric neurologists who want to provide services to the people we focus on. In addition to updates and discussion of programmatic and strategic improvements, we are considering the idea of presenting member-led case studies to a broader audience of AAN members to address education needs. The IDD section overlaps with other AAN sections such as epilepsy, behavioral neurology and neurogenetics, and we would like to partner with them on educational efforts and our case studies as well.

Are there good training and/or experience for neurologists who want to provide care for adults with IDDs? 

Dr. Aravamuthan: There are very few, but some members of our section have been working hard to make strides in that area. Jessica Solomon-Sanders, MD, and Julia Frueh, MD, set up a clinic for adults with IDDs while still neurology trainees at Boston Children's Hospital. That clinic has become very successful and Dr. Solomon-Sanders, who is now on the faculty at the University of Colorado, is establishing a similar program there. Joan Jasien, MD, who is trained in both pediatric neurology and medicine/pediatrics, directs the developmental disabilities program at Duke and is focused clinically and research-wise on caring for people across the lifespan. This is a very much needed, but unfortunately, uncommon approach. All of these efforts are really just starting within the past couple of years, with members of our section at the forefront.

What is your message to neurologists interested in your section?

Dr. Aravamuthan: A lot of people are called upon to care for this population in the community and don't really know about us. We want to be a home for all of those clinicians, a collegial forum where we can work together, learn together, and create models for clinical care, research, and education. We want to convey our passion for caring for these people to all neurologists and let them know that this is a population that needs us. We're an open, welcoming, collaborative section that is very goal-driven in terms of improving the lives of adults with IDDs. We are eager to work with neurologists from any field, so please come on in!

Published with permission from Neurology Today®, June 17, 2021.