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Funded Projects

Leadership Education in Neurodevelopmental Disabilities

Project Website

Grant Status: Active

Training Category: LEND

Project Director(s):

Margaret Jaynes, MD
West Virginia University
959 Hartman Run Road
Morgantown, WV  26505
Phone: (304) 293-4692
Email: mjaynes@hsc.wvu.edu

Problem:

The 2017-2018 National Survey of Child Health data for WV indicates 23.8 % of children have special health care needs as compared to a national rate of 18.5 %. Children who live in small rural areas are less likely to have a designated place to receive acute or preventative care than those living in urban areas. West Virginia has one of the highest prevalence rates of Autism spectrum disorder in the country. Meeting the needs of these children and families requires skilled healthcare leaders who are sensitive to the complex cultural, social and economic characteristics of WV and the surrounding rural Appalachian region. Poor highways, low literacy and high poverty rates impact WV families who must locate services in a state where 52 out of 55 counties are wholly or partially designated as Medically Underserved Areas. TARGET POPULATION: The population includes infant, children and youth from throughout the West Virginia (WV) and border areas from underserved rural areas. The diagnostic categories served include ASD, epilepsy, intellectual disabilities, language disorders, genetic disorders, chronic health conditions, neuromuscular diseases, and NAS.

Goals and Objectives:

The purpose of the Maternal and Child Health Leadership Program Leadership Education in Neurodevelopmental Disabilities (LEND), is to improve health equity of infants, children, and adolescents who have, or are at risk for developing, autism spectrum disorder (ASD) or other neurodevelopmental and other related disabilities (NDD) who live in rural areas by 1) advancing the knowledge of leadership skills of a full range of health professionals; 2) increasing early screening and diagnosis of infants, children, and adolescents with ASD or other NDD; 3) promoting innovative practice models with existing and new partners in order to improve health care systems and service delivery for underserved areas; and 4) providing evidenced-based high-quality interdisciplinary training to trainees, youth with disabilities, their families and caretakers as well as healthcare professionals. METHODOLOGY and

Evaluation:

The program utilizes curriculum is based on MCH concepts presented in a combination of didactic and experiential forums to prepare a wide range a health professionals, family members and self-advocates with the skills necessary for leadership roles in emerging healthcare systems. LEND will use process and outcome data to evaluate overall performance of the program through a continuous performance model.

Coordination:

LEND has a long history of coordination with WV Title V, West Virginia University (WVU) School of Medicine and WVU Center for Excellence Programs. The LEND Program will expand partnerships as a member of the Rural Workgroup, four LENDs with the common goal of addressing issues unique to rural areas. ANNOTATION: To meet the needs of WV children with ASD and other NDD, LEND will train leaders grounded in the philosophy of the provision family centered, high-quality culturally competent and interdisciplinary care through didactic and experiential forums resulting in attainment of competencies necessary to meet leadership, systems and infrastructure goals.



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