Abstract
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.
Proposed services:
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).