West Virginia University

Problem:

Children in WV with disabilities between ages 5–20 comprised nearly 10% of the same age population compared to 6% nationally (2000 U.S. Census.) Access to primary and specialized health care is a critical problem. A lack of leadership to address these concerns has impacted the state and region.

Goals and Objectives:

Goal 1: The LEND Project improves the health of infants, children and adolescents who have, neurodevelopmental disabilities by preparing trainees from a wide variety of disciplines to assume leadership roles. Objective 1: Improve health care delivery systems for children and adolescents with neurodevelopmental disabilities by advancing the knowledge and leadership skills of the full range of child health professionals. Objective 2: Promote the integration of services supported by state, local agencies, organizations, private providers and communities, especially those in rural settings, by providing high-quality interdisciplinary education to health professionals. Objective 3: Enhance cultural competency, increase partnerships among disciplines and strengthen family-centered approaches to care in rural settings by demonstrating and promoting innovative, evidence-based practice models.

Methodology:

Each trainee completes a core curriculum along with the activities contained in the Individualized Training Plan (ITP). In developing the ITP, each trainee plans activities that will provide experiences beyond the core curriculum relating specifically to their individual disciplines. The core curriculum has nine training forums: (1) Orientation; (2) the Core Course, “Disabilities and the Family;” (3) the newly developed community and public policy course, “Integrated Services for Children with Disabilities;” (4) the Leadership Seminar; (5) the Interdisciplinary Clinical Experiences; (6) Leadership Enhancement Experiences; (7) the Family Partnership Program; (8) Mentoring; and (9) the Interdisciplinary Research Group.

Coordination:

The Title V clinics are interdisciplinary training sites for the Project and Title V clinical and administrative staff serve as educators for trainees. Continuing education, training and technical assistance are provided to Title V staff and to other maternal and child health related service providers. LEND faculty and staff participate in West Virginia Birth to Three policy-making and training activities. The LEND dietician supervises the State’s Title V full-time pediatric dietician.

Evaluation:

The LEND Plan for Monitoring and Evaluation includes both qualitative and quantitative measures and provides for evaluation of each of the Project objectives, overall performance of the Project and its participants, as well as completion of trainee competencies. Both process and outcome data are collected through an NIRS data system and reviews by mentors and CED’s Consumer Advisory Council. Special consideration is given to how the impact of the Project aligns with regional/national priorities.

Experience to Date:

During the funding period, MCH/LEND supported 8 long-term trainees and provided training to 7 intermediate and 132 short-term trainees. Two thousand five hundred twenty-one (2,521) children with neurodevelopmental and related delays received clinical serives. LEND faculty and trainees contributed over 4,000 hours in training, technical assistance and product development. Interdisciplinary didactic and clinical training was offered to trainees in a range of clinic and community-based settings including Camp Gizmo, an assistive technology camp for young children and their families. Faculty taught 27 courses for a total of 537 hours. A Leadership Training Seminar was offered to 68 trainees and staff. A module on Appalachian cultural competency was developed and piloted along with a seminar on minority culture in Appalachia. Also, a joint Leadership Seminar was held between Ohio state, WVU and Pittsburgh University. Trainees and mentors received training on leadership and systems issues.