Abstract
Problem:
Individuals with developmental disabilities, including Autism Spectrum Disorders (ASD/DD) in upstate New York State lack adequate access to effective, person- and family-centered, culturally responsive, community-based, economical, and coordinated services and supports. Those with ASD/DD in urban and rural settings are especially underserved. Gaps in services to transition-age youth with special health care needs also remain significant. In addition, the COVID-19 pandemic and violence against members of Black and Brown communities have exposed and intensified existing issues related to health equity, structural racism, and intersectionality. To better meet the needs of our disability community these issues must be addressed with cultural humility and mutual respect through meaningful community partnership, shared vision and leadership, and collaborative outreach and training.
Goals and objectives:
The University of Rochester LEND (UR LEND) program, in collaboration with colleges and university partners in 14 disciplines, trains health professionals and advocates to provide professional and community education, deliver state-of-the-art service, and engage in research and advocacy, and policy opportunities using a person-centered, interdisciplinary approach to improve the health of children and adults with, or at risk for, ASD/DD and to support their families along the life course. UR LEND funding cycle priorities include disability advocacy, person- and family-centered care, and equitable community-partnered health. UR LEND is committed to community integration, addressing health inequities, expanding the diversity of self-advocate trainees to include those with ASD and/or intellectual disability, and ensuring that the voices and experiences of individuals with ASD/DD and their families inform and guide teaching and learning content. These priorities will also enhance clinical, leadership, policy, and research training. UR LEND's flexible core curriculum accommodates the differing needs of advocate trainees and trainees in degree-seeking programs through both didactic and experiential methodologies, encompassing MCH Leadership Competencies.
Evaluation:
Program data are collected continuously over the year and are submitted annually to MCHB via the AUCD NIRS system and LPQI Network. Close monitoring permits regular integration of feedback for ongoing faculty professional development, trainee supervision, and programmatic improvement. The UR LEND program has a history of success, with 109 long-term trainees and 379 medium-term trainees mastering MCH Leadership Competencies in the past five years, and 317 individual long term leadership trainees since its inception in 1994.