Abstract
Problem:
Children with autism spectrum disorder (ASD) and developmental disabilities (DD) and their families experience health disparities in a number of areas, including delays in receiving appropriate/timely diagnoses/treatment, high levels of health and mental health disorders, lack of medical homes, and lack of coordinated, community-based, family-centered services. These disparities are even more pronounced in underrepresented and underserved communities. These problems persist in part as a result of inadequate numbers of trained professionals and fragmented, poorly coordinated systems of care. The UMMS-Shriver LEND program trains leaders who are equipped to create equitable, integrated, coordinated, family-centered, and culturally competent programs and systems that deliver exemplary services and care.
Goals and objectives:
Over the next five years the Shriver LEND program will: (1) increase the number of leaders who are well-prepared to create and lead responsive systems of community-based care for children/youth with ASD/DD and their families; (2) increase the number of clinicians who are well-trained to deliver high quality, interdisciplinary, family-centered and culturally competent care; (3) increase the knowledge, skills, and competence of professionals, families, and others to employ evidence-based methods for assuring full community participation and health of people ASD/DD and their families; (4) provide clinical services that directly benefit children with ASD/DD and families; (5) advance the scientific knowledge about the needs of these children and families; and (6) provide technical assistance, consultation, and advocacy to improve clinical practice and service systems that impact the lives of those with ASD/DD.
Methodology:
Our Leadership in Clinical Care program focuses on exemplary interdisciplinary clinical training for individuals pursuing degrees in clinical disciplines. Our Advanced Leadership Fellowship program is an intensive 9-month program for experienced clinicians and family members whose goals are to bring about systems change. Trainees receive in-depth interdisciplinary training on evidence-based practices for children with ASD/DD and advanced leadership training to equip them to influence policy and legislation at local, regional, and national levels. We hold a life course perspective on health and disability, and seek to eliminate health disparities and social disadvantage among all MCH populations.
Evaluation:
We collect information monthly from faculty on their activities, allowing us to track our progress against yearly benchmarks. Fellows and trainees receive ongoing assessments of their knowledge and skills. At 1, 2, 5 and 10 years, program graduates/alumni are surveyed about their leadership activities and involvement with MCH populations.