Funded Projects

Problem:

Optimal health for children with disabilities across the lifespan depends on access to quality care, elimination of disparities, and family partnerships. The LEND Program at WIHD and NYMC prepares trainees to become leaders who value these goals and have the knowledge and skills to promote them.

Goals and Objectives:

Goal 1: To provide long-term leadership training to health professionals to prepare for key leadership positions in areas related to children with neurodevelopmental disabilities and their families. Objective 1: 22 - 24 long-term LEND trainees from 12 LEND disciplines will complete the Program. Objective 2: One-to-three parents of children with neurodevelopmental disabilities will complete the LEND Program as Family Specialist trainees. Objective 3: A total of 50 short-term and intermediate-term trainees will also complete training experiences related to children with neurodevelopmental disabilities and their families. Goal 2: To recruit qualified LEND candidates representing the diversity of the population we serve and continue to employ strategies increasing interest in LEND among undergraduates from minority groups. Objective 1: Continue targeted recruitment efforts to assure selection of qualified trainees from diverse population groups and report our outcomes on Performance Measure #9, "percent of participants in MCHB training programs who are from underrepresented groups," meeting our stated annual performance objective. Objective 2: Continue to have two undergraduate social work students from Mercy College (a nearby four-year college that is a Hispanic-Serving Institution) complete clinical practica at WIHD and provide mentoring to encourage advanced study related to CSHCN. Objective 3: Continue the partnership with the University of Puerto Rico, School of Public Health, recruiting two to three trainees per year to participate as LEND trainees. Goal 3: To evaluate the long-term impact of our LEND Program on long-term trainees. Objective 1: Contact former trainees at 1-, 5-, and 10-year post-graduation, resulting in at least an 80% completion rate for the National Information and Reporting System (NIRS) long-term trainee survey, and annually contact all former trainees to update the NIRS mini-survey. Objective 2: Report leadership accomplishments of 1-, 5-, and 10-year post-graduation trainees on Performance Measure #8, "percent of graduates of MCHB long-term trainees who demonstrate field leadership after graduation," meeting our annual performance objective. Objective 3: Report the proportion of responding 1-, 5-, and 10-year post-graduation trainees who "are engaged in work related to MCH populations" on Performance Measure #84, meeting our stated annual performance objective. Goal 4: To provide a dynamic and effective learning experience for trainees and fellows, designed to teach advanced clinical skills and to develop leadership abilities. Objective 1: Review & revise the curriculum of the core LEND Program courses, interdisciplinary clinical experiences, LEND Leadership Projects, & Seminar in Evidence-based Methods with input from yearly meetings of the LCC, LCAC, review trainee feedback, & new information from literature and professional groups. Objective 2: All LEND trainees will participate in the three core courses: Neurodevelopmental Disabilities and Systems of Care (NBSC), the Interdisciplinary Leadership Seminar (ILS), and the Seminar in Evidence-based Methods (SEBM). Objective 3: LEND faculty will incorporate elements of life course theory into their LEND sessions, using case-based discussions. Goal 5: To prepare health professionals who have the knowledge, skills, and values to work in partnership with families. Objective 1: All LEND trainees will participate in the Family Partnerships module of the LEND core course NDSC, and complete a pre-post self-assessment of family-centered competence. Family Specialist LEND trainees serve as presenters. Objective 2: Each LEND trainee will complete two required LEND Leadership Projects: the Family Mentorship Experience and the Family-Focused Disability Organization Interview and will submit and present orally one self-reflective and one informational report. Objective 3: Training on inclusive practice, life course theory, transition, sibling issues, and self-advocacy/self-determination will be included in LEND core course curriculum and include presentations by individuals with developmental disabilities and family members.

Methodology:

The LEND Curriculum Committee, with input from the Community Advisory Committee, updates the curriculum of the LEND Program at WIHD annually to assure that it continues to address the major knowledge, skills and values competencies needed by future leaders in care for and service to children with neurodevelopmental disabilities and their families. The core curriculum, based on MCHB national standards for interdisciplinary leadership training, has four components: 1) a two-semester course on neurodevelopmental disabilities and systems of care; 2) a two-semester leadership seminar with assigned projects that support acquisition of leadership competencies; 3) a two-semester seminar in evidence-based methods that includes participation in an interdisciplinary project team; and 4) supervised interdisciplinary clinical training. Each trainee develops a portfolio documenting acquisition of leadership competencies. Faculty and trainees collaborate in offering technical assistance and continuing education responsive to the needs of MCH professionals and families. The importance of dissemination and collaborative relationships is emphasized through the required poster session in which trainees present their research to the NYMC and School of Health Sciences and Practice (SHSP) community and through the annual trip by LEND trainees and faculty to the NYS DOH to meet with and present their research findings to the Title V Program staff.

Coordination:

Collaborative partners include state Title V agencies, the DDPC, P&A Agencies, education programs, universities, community colleges, health and employment agencies, and services for children and adults. We also collaborate with the LEND programs at Einstein and the University of Rochester, the University of Puerto Rico, and the Virgin Islands UCEDD, VI DOH and CCHMC/University of Cincinnati.

Evaluation:

The LEND Program will set and meet targets for indicators: proportion of former trainees working in MCH environment in leadership roles, the value placed on LEND leadership training by former trainees, self-assessed cultural competence, family-centeredness, and policy, proportion of LEND trainees from underrepresented groups, level of collaboration, and use of CE and TA to support the MCH community. Trainees will be evaluated by faculty and families, and provide feedback on courses.