Medical Education & Training Research
Primary Care for Adolescents & Beyond with Complex Childhood-Onset 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.
Community Partners
- Special Olympics of Pennsylvania
- The ARC of Philadelphia
- Carousel Connections
- 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 FAB Center for Complex Care - a primary care medical home for adolescents and adults with complex childhood-onset conditions. FAB services as the home base for clinical activities for Mary Stephens and Karin Roseman.
- PADDC Grant - The Pennsylvania Developmental Disabilities Council has granted the FAB Center with a three year Quality Healthcare Access Grant to create a community advisory board of people with lived experience with IDD to help co-design and provide education to family medicine residents throughout the enterprise on working with people with IDD. In year three of this project, we are launching a website with educational modules on the care of people with IDD which is free and can be accessed by professionals and community members.
- HRSA Grant - The Health Resources and Services Administration has granted the FAB Center with a five year grant for their project: JET PHILA: Jefferson Education and Training in Primary Healthcare in IDD and Language Access. The Jefferson Education and Training: Primary Healthcare in IDD and Language Access (JET: PHILA) program will enhance medical student and resident training at Jefferson. Through elective courses, clinical experiences, and service-learning opportunities, trainees have the opportunity to learn from experienced faculty and clinicians as well as patients with lived experience with both IDDs and LEP. Medical students and residents will gain clinical, cultural, and linguistic competencies to provide quality care to patients with IDDs or LEP.
- Thomas Jefferson University Health Women’s Board - The Women’s Board has provided two grants to the FAB Center for their projects;
- Providing period panties and education to people with IDD who menstruate
- Providing 3, 2, 1 Go! Kits to patients to increase physical activity and healthy nutrition
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
- Occupational therapy clinical and consultative services to individuals with ID and memory loss, Alzheimer’s disease or other dementias and their caregivers
- Skills to Care®ID
- Home Safety Assessments
- Community/national education efforts · National Task Group
- American Academy of Developmental Medicine and Dentistry
Down Syndrome Medical Interest Group
Down Syndrome Medical Interest Group USA - Potential for interdisciplinary clinic with JCCP/OT
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.
Current Funding
Increasing Access to Quality Healthcare - PADDC
Through a Quality Healthcare Access grant from the Pennsylvania Developmental Disabilities Council, our team, led by Principle Investigators, Dr. Mary Stephens and Karin Roseman, LCSW, has created a diverse set of free online learning materials including modules, videos, resources for use in practice, and references in academic literature. All topics are designed to increase provider’s attitudes and confidence toward providing quality care for people with intellectual and developmental disabilities.
Physicians, nurses, physician assistants, and social workers can receive up to 3.75 CEU hours for completing the four-module learning series, for no cost.
Additional CEU credit opportunities for the other modules is coming in 2027.
Learning materials can be completed for continuing education credit, embedded into a medical residency or professional curriculum, used for staff training, and more.
Want to learn more, connect about a patient panel or learn with our team? Contact us Rosemary.Corcoran@jefferson.edu
https://academiccommons.jefferson.edu/ext/FAB/
The Pennsylvania Developmental Disabilities Council is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $3,025,222.00 with 100 percent funding by ACL/HHS. Council efforts are those of the grantee and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.
JET: PHILA – HRSA
Our team was awarded a 5-year Health Resources and Service Administration (HRSA) award titled Jefferson Education and Training: Primary Healthcare for IDD and Language Access – JET: PHILA. The goal of this award period is to train future providers to deliver quality primary care to patients with intellectual and developmental disabilities and patients with limited English proficiency.
We are training medical students, residents, and fellows in primary care about care of patients with intellectual and developmental disability
One initiative of the project is Project ECHO (Extension for Community Outcomes), an ‘all teach, all learn’ live, virtual webinar series. Past topic series have included memory care, aging, nutrition, emergency care, psychiatric care, transitions to adulthood, and more. The ECHO series typically runs 4 sessions in the fall, and 4 sessions in the spring. Sign up to join us at our next ECHO. https://jefferson.co1.qualtrics.com/jfe/form/SV_9KPlFi8vTOBSAm2
In Motion, In Community: Wellness for People with IDD/A & Their Supporters
A community grant award from the Eagles Autism Foundation helped our team create the project ‘In Motion, In Community: Wellness for People with IDD/A and Their Supporters’. This year-long project will host 6 sessions focused on learning about different elements of wellness, from choosing healthy beverages, emotional wellness, physical activity, and more. Sessions are free and open to the community! The project runs from March 2026 through March 2027.
Learn more, catch up on previous sessions, and register for an upcoming session on our project website.
- Thomas Jefferson University Health Women’s Board - The Women’s Board has provided four grants to the FAB Center for their projects;
- Providing period panties and education to people with IDD who menstruate
- Providing 3, 2, 1 Go! Kits to patients to increase physical activity and healthy nutrition
- Providing transportation to and from medical appointments
- Providing sensory tools for use in clinic