Abstract
Problem:
Approximately 61 million people in the US experience disability. As our nation becomes increasingly diverse, health disparities based on language and race/ethnicity are becoming more evident, especially among individuals with autism spectrum disorder and other developmental disabilities (ASD/DD). Unfortunately, there are relatively few health and education professionals with expertise in ASD/DD, and our workforce does not reflect the diversity of our population.There are 2.7 million people in South Florida, English is not the first language for more than 60% of residents, and health disparities and unmet needs exceed national averages. To meet this need, maternal child health (MCH) leaders must be well trained in screening, diagnosis, and intervention for children with ASD/DD. They must also be culturally and linguistically responsive, person- and family-centered, and ready to adapt to emerging sociocultural and epidemiologic issues; able to recognize how systems-level issues affect MCH; and able to partner with individuals, families, and communities to implement evidence-based solutions.
Goals and objectives:
Our Leadership Education in Neurodevelopmental Disability (LEND) program is one of the oldest and largest in the nation. For 50 years, we have provided interdisciplinary, family-centered training to graduate students, practicing professionals, family leaders, and individuals with disabilities. We began using asynchronous on-line training in the 1990s, addressing social determinants of health in the early 2000s, and in the early 2010s reorganized Mailman's training, research, advocacy, and clinical services to improve health equity at the intersection of disability and other life experiences, such as poverty and race/ethnicity. As a result, we have seen population-level improvements in child development in neighboring communities, and our LEND trainees represent one of the most diverse cohort in the US: 66% of our 236 long-term trainee graduates over the last 5 years are Black (24%) and/or Hispanic (42%).In our next 5 years, we will continue providing interdisciplinary training to build professionals' capacity to screen, evaluate, and treat individuals with ASD/DD, especially in underserved populations. Our goals are to (1) increase the number and diversity of leaders to provide person and family-centered, interdisciplinary, culturally responsive services; (2) increase the number of leaders who can evaluate and develop public policy and can (3) conduct research and integrate it into clinical programs and systems of care; (4) provide continuing education and technical assistance; and (5) improve local systems of care. At least 40 long-term and 60 medium-term trainees (at least 60% from minority backgrounds) will be recruited each year in 17 LEND disciplines. They will participate in (a) a case-based web course on core LEND topics; (b) an individual leadership project; (c) center- and community-based interdisciplinary experiences; and (d) small-group sessions designed to build a common experience among trainees, including family members and people with disabilities. Innovative aspects include our focus on community impact, telehealth techniques, a leadership-training pyramid, and training all professionals to address lifespan issues. We collaborate with more than 90 universities, government agencies, and community partners, including lasting partnerships with Florida's state Title V agency, Florida Developmental Disabilities Council, and other MCHB training programs. Outcomes include the number and diversity of trainees completing LEND training and demonstrating leadership; program quality is measured by a national data network and long-term follow-up trainee surveys.