Grant Status: Active
Training Category: Leadership Education in Neurodevelopmental and Other Related Disabilities (LEND)
Deborah M Spitalnik, Ph.D.
The Boggs Center on Developmental Disabilities
Rutgers Robert Wood Johnson Medical School, Dept. of Pediatrics
Rutgers, The State University of New Jersey
335 George Street, Suite 3500
New Brunswick, NJ 08901
Goals and Objectives:
As an interdisciplinary, clinical leadership education program, NJLEND integrates family-centered, culturally competent, life course, social determinants and public health perspectives to address ASD and other developmental disabilities. NJLEND goals, objectives, and competencies are achieved through: 1) interdisciplinary training of 12 long-term trainees from 8 disciplines by an interprofessional faculty and community partners; 2) interdisciplinary and family-centered education of additional trainees, including all medical students at Rutgers Robert Wood Johnson Medical School; 3) continuing education of practicing professionals and families; and 4) consultation and technical assistance to improve systems of care. New Jersey consistently has the highest reported prevalence of ASD in the country. As of 2016, 1 in 32 of NJ's children were identified with ASD compared to the national average of 1 in 54. Though ASD can be diagnosed as early as 2 years, children in NJ were initially diagnosed at 4.9 years in 2019, missing the benefits of early and intensive intervention. An estimated 17% of NJ children under 17 have a special health care need. Despite their increased need for health and other services, only 40.6% of children with a SHCN in NJ and one-third of children with ASD nationally, received coordinated, ongoing, comprehensive care within a medical home. Children living in poverty and those from families of color experience disparities in access to care that adversely affect developmental outcomes. NJLEND cultivates cohorts of leaders who contribute to building interdisciplinary, family-centered, culturally competent systems of care to address the needs of those with ASD and related disabilities and their families across the life course. A unique set of university, state, community, and family partnerships ensure that NJLEND reflects the diversity of the state, is responsive to identified needs, and upholds the priorities outlined in the 2019 Autism CARES Act. NJLEND draws upon the perspectives of 8 disciplines. Long-term trainees and faculty mentors drawn from Rutgers Biomedical and Health Sciences and the Graduate School of Arts and Sciences form the core of NJLEND: Genetic Counseling, Medicine, Nursing, Nutrition, Psychology, Public Health, and Social Work. The lived experience of disability is central to NJLEND, with Family as a core discipline and plans to add Self-Advocacy by Year 3. With 14 clinical sites caring for 9,133 patients with ASD in 2020, Children's Specialized Hospital (CSH) serves as primary clinical training partner for NJLEND. The long-term interdisciplinary leadership training program, delivered across a 9-month academic calendar, equips trainees to meet the needs of those with ASD, related disabilities, and other maternal and child health populations through 3 integrated components. The didactic seminar series includes 3 curricular strands integrated across the year: Caring for Individuals with ASD and Related Disabilities Across the Lifespan; Policy & Advocacy; and Research: From Bench to Bedside to Community. A range of clinical experiential learning opportunities, linked with didactic curriculum, are offered in family homes and at sites within Rutgers, CSH, and the larger community. Leadership skill development, based on MCH Leadership Competencies, is integrated into the curriculum and supported by Faculty Discipline Mentors.