Rose F. Kennedy Leadership Education in Neurodevelopmental and Other Related Disabilities (RFK LEND)
Grant Status: Active
Training Category: Leadership Education in Neurodevelopmental and Other Related Disabilities (LEND)
Lisa Shulman, MD
Albert Einstein College of Medicine
1225 Morris Park Avenue
Van Etten, Room 2C49
Bronx, NY 10461
Needs to be addressed:
Approximately one in 54 children (1.9%) in the United States (US) has been identified with autism spectrum disorder (ASD) and one in six children (17%) between 3 and 17 years of age in the US have been diagnosed with a developmental disability (DD) (CDC, 2020a; CDC,2019). And these prevalence rates are increasing. Access to adequate health care is a significant problem for individuals with ASD/DD including diagnostic expertise, medical management, and evidence-based developmental and therapeutic interventions. Significant racial and ethnic disparities also exist in the recognition, diagnosis, and treatment of ASD/DD, particularly in underserved populations. It is well-established that this is related to a lack of trained providers for individuals with ASD/DD and their families. The purpose of the LEND program is to improve the health of individuals who have or at risk for developing ASD/DD by providing graduate level training to a multidisciplinary cohort of medical and allied health professionals, families, and self-advocates with ASD/DD dedicated to working with and improving the systems of care for individuals with ASD/DD. The principal goal of the LEND is to increase the capacity of the workforce well-trained to meet the complex needs of individuals with ASD/DD and to take on leadership roles in the field.
The Rose F. Kennedy Leadership Education in Neurodevelopmental and Other Related Disabilities (RFK LEND) will: (1) Train students and professionals on the complex needs of persons with ASD/DD in an interdisciplinary manner; (2) Increase the number of trained providers able to diagnose and treat those with ASD/DD; and (3) Enhance the clinical expertise and leadership skills of practicing professionals, families and self-advocates dedicated to caring for individuals with ASD/DD across the lifespan. In order to meet these goals, the RFK LEND will train at least 60 long-term, 60 medium term, and 500 short-term trainees per year using an Interdisciplinary Training approach. Faculty will include professionals from the following 15 disciplines: (1) Applied Behavioral Analysis; (2) Audiology; (3) Family; (4) Genetics; (5) Medicine /Pediatrics; (6) Nursing; (7) Nutrition; (8) Occupational Therapy; (9) Pediatric Dentistry; (10) Physical Therapy; (11) Psychology; (12) Self-Advocates; (13) Social Work; (14) Special Education (15) Speech-Language Pathology. Population group: Located in the Bronx, the RFK LEND program supports New York City and Long Island's 11,170,342 residents including 3,694,169 foreign-born individuals speaking more than 120 languages, 2,236,707 children under age 19, and an estimated 42,497 children with ASD and an estimated 380,240 children with DD. With more than 38% of its residents living at or below the poverty level, the Bronx is the poorest urban county in the US. Residents of the Bronx are high-risk for health problems and an underserved group (U.S. Census Bureau, 2019a).