The interdisciplinary Leadership Education in Neurodevelopmental Disabilities (LEND) fellowship program at the Children’s Hospital of Philadelphia (CHOP) has been operating since 1992. LEND is supported by a grant from the federal Maternal Child Health Bureau, Health Resources and Services Administration, U.S. Department of Health and Human Services. There are more than 50 LEND programs in the United States and its protectorates. LEND programs recruit professionals from over 12 health care and allied health disciplines.
LEND is a fellowship for professionals who are completing an advanced degree in health care fields associated with maternal and child health, family members who care for children with developmental or related conditions, or individuals (self-advocates) who have experienced disability or chronic conditions in their own lives. Building on CHOP’s strong commitment to family-centered care, its LEND Program has included parents as faculty since its inception. CHOP annually recruit 20-25 fellows, including a Family Fellow and a Self-Advocate Fellow who fully participate within the LEND fellowship.
The one-year LEND Fellowship involves:
- Core Curriculum with didactic courses
Courses, taught by an interdisciplinary faculty (including family faculty and self-advocates), include a comprehensive overview of developmental disabilities, distinctive family issues, public policy, interdisciplinary case conferences, a research course and more.
- Experiential activities aimed to promote leadership development.
Those training components include the (a) Community Collaboration, (b) Family Collaboration, and (c) Mentored Research.
Patients/Families as Educators
A parent and a self-advocate each serve on the LEND Core Faculty and actively participate in curriculum development, delivery, and evaluation. In this role they recruit and mentor the Family Fellow and the Self-Advocate Fellow over the course of the year. The Family Core Faculty member directs the course in Family Professional Collaboration. The Self-Advocate Core Faculty member teaches classes on disability policy and disability identity, as well as co-directing the LEND Research Course.
Additionally, the course on Family Professional Collaboration includes a series of classes with members of CHOP’s Family Partner Program presenting on the core concepts of family centered care. CHOP Family Partners are also invited to speak at LEND classes about their child’s health care journey. Family Partners and Self-Advocates also present during LEND classes on Transition to Adulthood and other topics.
- Each LEND fellowship cohort includes a Family Fellow and a Self-Advocate Fellow. These fellows participate in all components of the fellowship training with the fellows who have professional training, including the Research Program and the Interdisciplinary Case Conferences.
All LEND fellows complete a Family Collaboration Experience that aims to enhance fellows’ understanding of families’ first-hand experiences with the challenges and triumphs encountered in caring for children with disabilities and chronic health conditions. Through these experiences, fellows learn more about families’ perspectives regarding the activities of daily living, clinical service delivery, systems of care, community resources and research participation. Options for the Family Collaboration Experience include:
Each option of the Family Collaboration Experience utilizes CHOP Family Partners as educators and provides a direct learning opportunity for the fellows to understand the family perspective.
- Family Mentorship, in which a fellow visits a home and spends time in the community with a child and family;
“When I did my family visit it was a very interesting and eye-opening experience. I could see the importance of putting aside our own biases and assumptions, listening to the family/patients in order to understand where they are coming from…”
- Family Advisory Council and/or the Youth Advisory Council, committees within the CHOP Family-Centered Care Initiative;
- Parent portion of the Transition to Adulthood workshops in which fellows work with parents on navigating their children’s transition to work, higher education and the adult health care system.
Advice for Other Institutions
- Integrate family and self-advocates’ perspectives into all core components of your curriculum, including Research Training, Clinical Case presentations, and community partnerships.
- Engage family members and self-advocates to participate as advisors as you develop or revise the curriculum. Advisors can be recruited from the hospital’s family partner program or via local advocacy organizations such as the ARC, United Cerebral Palsy Association, or through the regional University Center on Excellence in Developmental Disabilities (UCEDD) (www.aucd.org).
- Encourage meaningful engagement with all family and self-advocate educators through consistent messaging and emphasis on the expertise they offer caring for children with a neurodevelopmental disabilities.