Pediatric-to-Adult Transitions of Care, Part 2: Intellectual and Developmental Disabilities

Pick up where we left off in Part 1 (Season 4, Episode 3) by applying the pediatric-to-adult transitions strategies we learned in that episode to a specific patient population: those with Intellectual and Developmental Disabilities (IDD), like Autism Spectrum Disorder (ASD). Transitions can be one of the most trying and health-destabilizing things a young person and their caregivers experience. In this episode, we learn from the experience and wisdom of Dr. Susan Hingle and Dr. Mai Pham, who have not only navigated this process with their patients, but with their own children as well. Their personal experiences have informed and fueled their wonderful professional work in this space as they demonstrate how we can provide and advocate for equitable care for this patient population.

Learning Objectives:
1. Define Intellectual and Developmental Disabilities (IDD), and the specific example of Autism Spectrum Disorder (ASD). Describe how these are diagnosed.
2. Describe key issues that healthcare teams should keep in mind for patients with IDD, including ASD, as they transition from childhood to adolescence to adulthood.
     a. In the clinic
     b. In the ER/hospital
3. Give examples of advocacy efforts for healthcare for members of this community.
4. Strategize how one can create inclusive healthcare environments, spaces, and culture for people with IDD, including ASD.

Credits:
Guest: Dr. Susan Hingle, Dr. Mai Pham
Co-hosts/Co-Executive Producers: Dr. Pooja Jaeel, Dr. Maggie Kozman
Executive Producer: Dr. Tammy Lin
Associate Producer: Dr. Candace Sprott
Senior Producer: Dr. DJ Gaines
Editor/Assistant Producer: Clara Baek
Production Assistants: Nilgoun Farhadi, Likitha Aradhyula
Website/Art Design: Ann Truong
Music: Chris Dingman https://www.chrisdingman.com

Continuing Medical Education/Maintenance of Certification (CME/MOC) credits are available through the American College of Physicians for both members and non-members. To submit for CME/MOC credit for this episode, visit: https://www.acponline.org/cme-moc/cme/internal-medicine-podcasts/the-dei-shift

Connect with us on Instagram at @thedayshift.pod and via email at thedayshifthealthcare@gmail.com

Transcript

[0:00] Dr. Pooja Jaeel: Welcome to The DEI Shift, a podcast focusing on shifting the way we think and talk about diversity, equity, and inclusion in the medical field. I'm Dr. Pooja Jaeel, a Medicine hospitalist and Pediatric primary care physician, here with my Co-Executive Producer of The DEI Shift…

Dr. Maggie Kozman: Dr. Maggie Kozman, a Medicine/Pediatric hospitalist. Today we're excited to bring you part two of our longitudinal series in Pediatric to Adult Transitions of Care, which we love to talk about as Med/Peds physicians.

Dr. Jaeel: Yes. In this episode, we'll be applying the concepts and strategies we discussed with Dr. Shirin Alonzo in part one – which is episode three of season four for those of you who want to go back and listen to that first – to a specific patient population: those with intellectual and developmental disabilities (IDD), including autism spectrum disorder (ASD). This patient group faces some incredibly difficult challenges as they transition from the pediatric healthcare model to the adult one. And adult practitioners don't always receive the type of training we need to receive these patients well from our pediatric colleagues.

Dr. Kozman: Yeah, there are just some things we don't even realize need to be accounted for in the care of these patients until we ourselves are going through the process as we'll hear, or we take the initiative to ask about the experience that these patients and their families are having as they transition to adult healthcare settings.

[1:25] Dr. Jaeel: Speaking with us about this topic are two wonderful guests, Dr. Susan Hingle and Dr. Mai Pham. Dr. Hingle is a primary care physician and medical educator who practices in Southern Illinois University.

Dr. Kozman: And Dr. Pham is a primary care physician in Washington D.C., and founder of the Institute for Exceptional Care, a nonprofit organization created to help people with disabilities get the care and support they need in order to thrive.

Dr. Jaeel: Thank you both so much for being here and sharing your clinical and personal experiences with the pediatric to adult transitions, with The DEI Shift and our listeners.

Dr. Mai Pham: It's wonderful to be here. Thanks for having us.

Dr. Susan Hingle: Yeah, I agree. Thank you so much for having us. I'm really excited to talk with both of you as well as with Dr. Pham. She has become one of my “sheroes.” I have this dream of a thriving world full of joy, connection, belonging, and potential. And I think conversations like this are really important steps towards fulfilling that dream.

Dr. Kozman: Thank you so much. We appreciate that and we're really excited to get into the conversation with you. We like to keep things casual here on our podcast, so we ask that you call us by our first names. And is it okay if we do the same for you?

Dr. Hingle: Absolutely. Yep. Yep. Sue's good for me.

[2:35] Dr. Jaeel: So before we get started, we like to ask each of our guests on The DEI Shift to share something for our listeners about themselves. This can be something like a hobby, a favorite food, a meaningful experience of yours, just so we can get to know you a little bit better and your background a little bit better, and to flex our cultural humility muscles. We call this segment, our Step in Your Shoes segment. So Sue, would you like to get us started?

Dr. Hingle: Sure. So I can tell you that I am a diehard Chicago Cubs fan. I have been since I was seven years old. And being a Cubs fan has provided really valuable life lessons, like patience, persistence to celebrate progress, and that it's not all about winning. That it's fun to root for the underdog, and that when they do win, like the Cubs did in 2016, the joy is even that much more incredible.

Dr. Pham: I'm a first generation immigrant. I was born in Vietnam and came to the States when I was not quite seven. Also important to know that I am the only daughter in a family of four. Which means, I've had to spend a lot of my life bridging between cultures, between generations, languages, but also I've had to learn how to be pretty scrappy and fight for the food at the table.

[4:45] Dr. Kozman: So let's jump right into the discussion. Could each of you first start us off by sharing your own personal and work experiences with the patient population we're talking about?

Dr. Hingle: I have an amazing son who has been diagnosed on the autism spectrum. He has not always been treated well in his life by a lot of people, especially our educational systems as well as many of his peers, and he is a big part of my “why” for this work. Professionally, I have an outpatient general internal medicine practice. I have some patients with IDD, some patients with autism, some patients with other disabilities. My goal is always to provide high quality, empathetic, patient-centered care. I have this lovely young woman who has IDD, and we struggled at first. After a couple of visits, I learned that she was afraid of white coats—that triggered her. So now in her chart it says “Do not wear white coats.” No one on the team wears a white coat when she visits, and our visits are so much easier now.

Dr. Pham: For me, how it happened was that I had been checking along doing my health policy work, but I was mothering at the same time. Our second child, Alexander, was diagnosed late, around age eight as autistic. No one around us seemed to feel like they needed to direct us to any specific resources right up until he had his first crisis as a sophomore in high school. Working our network, finding for the first time ever resources like an autism coach and evidence-based clinicians who really could partner with us was revelatory. For me, it's been a vertical learning curve through that lived experience as a mom.

[9:47] Dr. Jaeel: Sue, would you mind defining intellectual and developmental disabilities as well as autism spectrum disorder for our audience?

Dr. Hingle: When I think of IDD, I think about it as differing abilities in the way an individual acquires knowledge and skills, how they process information, and the acquisition of skills needed to function independently and socially. I wanted to point out that IDD is not low IQ; two thirds of people diagnosed with IDD have average or above average IQ. Autism spectrum disorder is a neurodevelopmental disorder that impacts how individuals interact with others, how they communicate, how they learn, and how they behave.

Dr. Pham: At the Institute for Exceptional Care, we focus on disabilities that appear at birth or in childhood because that timing magnifies the impact on social, emotional, and intellectual development. I love that Sue described it as "different abilities." Everyone has value and their own kind of competence.

Dr. Kozman: Thank you for those definitions.

Dr. Pham: I would like to point out that these criteria are not mapped onto specific known pathophysiology. The criteria with check boxes that imply a binary answer—someone is autistic, someone is not—can cause a lot of grief. For example, Alexander went through two rounds of testing and only got the diagnosis on the third round. He wasn't autistic the night before, but he was the next day according to the school psychologist. We need to exercise more humility about how we think about neurodevelopmental differences because they live on a spectrum.

[15:31] Dr. Jaeel: As this patient population ages out of pediatric care, what specific challenges do the patients and families face?

Dr. Pham: One thing that happens when you become a young adult is that you drop out of the educational system. In the employment world, there is no analog of the support and individualized education plans (IEPs) required in schools. Clinically, they have to transition to the adult clinical world where general clinicians receive very little training in IDD. Then you run into insurance problems. Transitioning from pediatric to adult insurance requires multiple transitions and, in many cases, a "PhD in Social Work" to figure out. It's unbelievably stressful.

Dr. Hingle: Our systems are not designed to be patient-centered. For patients with IDD, things take longer. A 10-minute doctor's visit is not going to be successful. When I send patients out for an appointment, I proactively tell them to give that patient two or three appointment slots. Another issue is the assumption of independence at age 18. There aren't many 18-year-olds who should be making entirely independent medical decisions without family support. Sometimes when they process information slowly, people assume they aren't intelligent, which is just our hurried culture talking.

Dr. Pham: One thing we have learned at IEC is that we don't always need to wait for the system to respond. We are working on a "Digital Snapshot"—an app decided by the person and their family. It's not a mini EMR; it's a face page with absolute essentials and "Tips on How to Work with Me," like what they look like when happy or what their anxiety triggers are. It's the healthcare equivalent of curb cutouts. Curb cutouts were for wheelchairs, but they're great for strollers and the elderly too. Universal design makes healthcare easier for everyone.

[29:27] Dr. Hingle: I think we talked about the assumption of independence. In hospitals, visitor policies that don't allow someone in the room after hours can be a huge issue for patients with IDD who have anxiety or sleep issues.

Dr. Pham: There are challenges with communication needs, sensory sensitivities, and procedures like blood draws. Many sites don't have behavioralist approaches to help people acclimate. I’d point to the Lee Clinic in Kentucky; they serve adults with IDD and coach both patients and peers. If a patient needs the dentist, they practice just sitting in the chair first, modulating lights and using weighted blankets before the actual exam. When the system helps clinicians serve these patients, the burden on the clinician is reduced as well.

[34:28] Dr. Pham: Beyond the Lee Clinic, the Down Syndrome Clinic at MGH is an amazing model. They produce an advocacy plan for their patients and even send social workers to advocate at schools. There's also StationMD, a group of clinicians who only focus on IDD via virtual care. They act as the first line of defense for triage and have reduced avoidable ER visits significantly.

Dr. Hingle: In Missouri, they've utilized the Project ECHO model to train multiple clinicians in IDD care through telehealth.

Dr. Jaeel: I’ve found that Child Life Services, which is usually for pediatrics, can be incredible for adult patients too, bridging the gap between home and hospital.

Dr. Kozman: I’ve seen adult patients benefit from resources like coloring pages and artistic outlets traditionally only found on pediatric floors. I also want to mention resources like the film "In a Different Key" on PBS, which humanizes individuals with ASD outside of a clinical setting.

Dr. Pham: I also want to invite listeners to the IDD Advocate Corps. We partner health professionals with self-advocates (people with IDD) to make change from within healthcare. If you're interested, contact us through the IEC website.

[46:00] Dr. Hingle: My takeaway is the concept of equity and co-liberation. Providing high-quality care for a specific population like this improves care for everyone. That is how we get to a world of joy, connection, and belonging.

Dr. Pham: You will be surprised at how nourishing this work is. When we bring people together across divides, we learn so much from one another. In doing the work and making yourself vulnerable, you will feel more effective as a clinician.

Dr. Kozman: Thank you both. That's all the time we have for today. Listeners, don't forget to claim your CME and MOC credits at acponline.org. See you next time!