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

The DEI Shift's mission is to create a podcast series on diversity, equity, and inclusion (D.E.I.) in medicine that sparks discussion and provides practice-changing data and stories for a physician, student, allied health professional, and health care leader audience. Listeners will be able to gain useful information to improve their practices and environments, to gain empathy, cultural competency, and humility, and to learn more about emerging D.E.I. concepts. The DEI Shift will discuss issues related to gender, race, sexuality, religion, ability, socioeconomics, and so much more.

Co-Hosts/Co-Executive Producers: Dr. Pooja Jaeel, Dr. Maggie Kozman

Guests: Dr. Susan Hingle, Dr. Mai Pham

Editor/Assistant Producer: Clara Baek

Production Assistants: Nilgoun Farhadi, Likitha Aradhyula

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.
   1. In the clinic
   2. 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.

[0:00-2:35] Welcome and Introduction

• Introduction of co-hosts, guests Dr. Hingle and Dr. Pham

[2:35-4:45]: Step in Your Shoes Segment

[4:45-8:03]: Background of Dr. Hingle and Dr. Pham  

• Dr. Hingle
  • Dr. Hingle shares her son is on the autism spectrum 
  • Dr. Hingle runs an outpatient general internal medicine practice with wonderfully diverse patient population, with the goal to provide high quality emphatic care
• Dr. Pham
  • Dr. Pham worked on health policy when her son was diagnosed with the autism spectrum, and had to actively find resources and professionals best care for their patients 

[8:03 - 13:18]: Definitions

• Intellectual Disability Disorder: different abilities in how individuals process and gain knowledge and skills. It does not mean low IQ. 
• Autism Spectrum Disorder: neurodevelopmental disorder that determines how individuals learn and behave 
• It is very important to exercise humility when thinking about neurodevelopmental disabilities because the pathophysiology is still unclear

[13:19 -21:08]: Challenges during the Transition for the patients and their Families

• General physicians do not receive training in IDD are not prepared to be good transition partners with their pediatric counterparts when patients with IDD become young adults
• When these patients transition, general clinicians should schedule at least two appointments with the patients to understand them and provide the best patient-centered care. However, it is still a huge task as it is difficult to have all visits with clinicians, social work, and therapy occur at the same time.   
• Project: Seamless Careline works with a coalition of community members of hospitals and insurances to solve the emergency department problem patients with IDD have to face. 
  • Intervention: digital snapshot that connects to cloud based passport which is driven by the patient and their family
    • Tips on how to work with me, triggers, what i like, music. How am i like when well/happy and not well 
    • Powerful self-advocacy tool that can be used in multiple environment

[21:08 - 24:36]: Challenges Patients with IDD Experience in Different Clinical Environments

• Visitor policies is a huge system issue where change could really accommodate the needs of patients with IDD 
• Communication and sensory sensitivities 
• Challenges in clinical procedures and medications 
  • Threshold when you decide to sedate someone - very tricky 
• Behaviorist approaches to help people acclimate to the hospital environment 
  • Lee Clinic in Kentucky primarily serves patients with IDD by working with help patients clinical peers to demonstrate measures to make clinical interactions go more smoothly 
    • Conditioning sessions to help them in situations 

[24:36 - 29:03]: Successful Initiatives 

• Down Syndrome Clinic in Massachusetts General Hospital consists of multi-disciplinary teams that help generate advocacy plans for patients with IDD 
  • This clinic is working on creating an online tool that takes patients and their caregivers through survey logic to answer questions about themselves. These answers then curate a personalized checklist that can be taken to the patients’ physicians and schools. 
• StationMD is an organization that consists of urgent and emergency care professionals, who are specifically catered to working with patients with IDD to help reduce emergency visits and reduce hospitalizations through preventative measures
• Project ECHO model works to provide care for patients with IDD
• Child Life Service is an in-patient service that help patients and caregivers to bridge gap between home and hospital 

[29:03 - 32:29]: Resources

• Institute for Exceptional Care (IEC) 
• Movie: In a Different Key 
• IDD Advocate Corps is a space that engages health professionals from different disciplines (clinical, insurance, research) to actively partner with patients with IDD. These partnerships can allow the health professionals leverage their influence in their respective fields to advocate for patients with IDD, creating real change.  

[32:29 - 36:32]: Takeaway and Conclusion

Resources

Institute for Exceptional Care
https://www.ie-care.org/

Equality vs Equity vs Liberation
Shahram, S. Z., Dyck, L., van Roode, T., Strosher, H.W., Revai, T., Dang, P., MacDonald, M. & Pauly, B. (2017). Health Equity Metaphors for Effective Communication. Victoria, BC: The Equity Lens in Public Health (ELPH) Research Project.
https://www.uvic.ca/research/projects/elph/assets/docs/KTE%20Resource%204%20-%20HE%20Metaphors%20for%20Effective%20Communication.pdf

Clinics/Programs providing excellent care models to patients with IDD
Lee Specialty Clinic in Louisville, Kentucky, U.S.A.
http://www.leespecialtyclinic.com/

Massachusetts General Hospital Down Syndrome Program
https://www.massgeneral.org/children/down-syndrome

Institute for Exceptional Care’s project called SCANS: Seamless Care Alliance of Nassau & Suffolk in Long Island, with its digital app called Always and Uniquely Me
https://www.ie-care.org/scans?_gl=1*xqnscm*_ga*OTA1NTQ3Njk1LjE2OTYzODEwMzc.*_ga_SK014R53RZ*MTY5NjM4MTAzNi4xLjEuMTY5NjM4MTA3NC4wLjAuMA

StationMD
https://stationmd.com/

In a Different Key film
https://www.inadifferentkeythemovie.com/

Institute for Exceptional Care’s IDD Advocate Corps
Email IEC at info@ie-care.org if you’re interested in becoming part of the IDD Advocate Corps.

Contributors

Pooja Jaeel, MD, ACP Member - Co-Hosts/Co-Executive Producers

Maggie Kozman, MD, ACP Member – Co-Hosts/Co-Executive Producers

Susan Hingle, MD, MACP - Faculty/ Speaker

Mai Pham, MD – Faculty/ Speaker

Nilgoun Farhadi – Production Assistant

Liktha Aradhyula – Production Assistant

Clara Baek – Editor/Assistant Producer

Reviewers

Tiffany Leung, MD, MPH, FACP, FAMIA, FEFIM - Independent Contractor: PlushCare, Inc

Dirk Gaines, MD, ACP Member

None of the contributors or reviewers for this educational activity have relevant financial relationship(s) to disclose with ineligible companies whose primary business is producing, marketing, selling, re-selling, or distributing healthcare products used by or on patients.  All financial relationships have been mitigated.

Release Date:  October 25, 2023

Expiration Date: October 24, 2026

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