Medical Education & Training Research

Continuing Care for Childhood-Onset Complex Conditions

Mission

Optimizing the care and defining best practices for the care of teens, adults, and older adults with complex childhood-onset conditions from transition to lifespan care. As part of this goal, we need to expand the disability competency of the interprofessional, collaborative workforce to further a person-centered culture in healthcare.

Collaborators

  • Mary Stephens, MD, MPH, FAAFP (Lead)
  • Allison Casola, PhD, MPH, MCHES
  • Nethra Ankam, MD
  • Jane Tobias, DNP, RN, MSN, CPNP-PC
  • Alex Fossi
  • Adel Herge, OTD, OTR/L, FAOTA
  • Wendy Ross, MD
  • Sabra Townsend
  • Karin Roseman, MSW

Community Partners

Special Olympics Pennsylvania, Down Syndrome Association of Delaware.

Themes

Third-year clerkships, fourth year electives, disability, curriculum development, community collaboration & education on IDD (Intellectual and Developmental Disabilities), participation with local, regional, and national IDD organizations, interprofessional workforce development.

Project List

Jefferson Continuing Care Program (JCCP) - a primary care medical home for teens and adults. JCCP serves as the home base for clinical activities for Mary Stephens. 

Jefferson Center for Autism and Neurodiversity - Alex Fossi, Jane Tobias, Wendy Ross, Sabra Townsend. 

  •   Vizient data analysis - NEJM Catalyst (led by Jon Gleason)
  • Standardized patients with autism in collaboration with SON
  • Ongoing evaluation of new approaches to healthcare and the medical-home model for care of neurodiverse individuals
  • Advocacy and policy
  • Patient and family experience

National Curriculum Initiative in Developmental Medicine (NCIDM)

  • Grant ends June 2021 - ongoing analysis of data and continued curriculum development
  • Study Team: Mary Stephens, Nethra Ankam, Allison Casola
  • Special Olympics Selective (MS1-4 and interprofessional involvement) and third year clerkship focus on IDD and physical disabilities through PDAT (Patients with Disabilities as Teachers) and the NCIDM toolkit

OT/ID & Dementia – Jefferson Elder Care

E. Adel Herge, OTD, OTR/L, FAOTA

Undergraduate Medical Education Director for Rehabilitation Medicine, Wellness Thread Director for JeffMD, Co-Faculty Lead of the Jefferson Health Mentors Program, Disability Education Innovation Initiative Committee Chair - Nethra Ankam

Evaluation of JeffMD curriculum from the standpoint of the Core Competencies on Disability for Health Care Educationto determine gaps in medical student education.

  • Use of Critical Disability Theory to look at the presence or absence of ableism in the JeffMD curriculum
  • Curriculum development to mitigate any ableism or gaps found.