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Funded Projects

Grant Status: Completed

Grant Title: The Leadership Education in Neurodevelopmental Disabilities Program at Children's National (LEND-CN)

Web Site: Children's National Medical Center Project Exit Disclaimer

Project Director(s):

Gaetano Lotrecchiano, PhD
Project Director
Children's National Medical Center
111 Michigan Ave. NW
Washington, DC  20010-2978
Phone: (202) 476-5849
FAX: (202) 476-6510
Email: glotrecc@cnmc.org

Problem. In 2009, 343,000 children nationally were receiving services under The Individuals with Disabilities Education Act (IDEA), Part C representing an increase of 21,000 children from 2008 and 137,000 from 2000 (Lazara & Danaher, 2010). From 1997 to 2006, the number of preschool-age children identified for services increased by 141,972 children and for school-age children and youth through age 17, the number increased by over 626,000 and these numbers continue to rise (Blackorby, et al., 2010). Ethnic and Racial Factors: Adding to the needs is the increase in the number of racially, ethnically, and linguistically diverse families, particularly in the younger generations (Shrestha, 2006). By 2050 it is estimated that Hispanic populations will double to approximately 24% of the population. Currently 3 in 4 young Hispanic children reside in households that speak Spanish regularly (Garcia & Jensen, 2009; Shrestha, 2006). These demographic changes are also seen in programs that serve young children such as early intervention and early education. Children who are African American, American Indian, and Hispanic are more likely to receive early intervention or be identified as needing special education and related services compared to the general population (Blackorby et al., 2010; Hebbeler et al., 2007). Children receiving early intervention services are more likely to live in poverty, be in foster care, have parents with limited education, and have multiple risk factors that can impact their health and well being throughout their lives (Hebbeler et al., 2007). For children in preschool, the largest increase in disability category was autism (Blackorby et al., 2010). Prevalence figures for children who will be diagnosed with an autism spectrum disorder is now as high as 1 in 150 births and the cost and complexity of their service needs is greater (CDC, 2007; Ganz, 2007; Rice et al., 2007; Zwaigenbarum et al., 2009). For systems in urban, high-need, high poverty districts like DC, the changes in demographics and needs are even more acute. The DC Public Schools (DCPS) population is largely African American (79%) and Hispanic (12%) with 8% percent English language learners (DCPS, 2010). Children who live in DC experience risk factors for delays and disabilities at higher rates than most other places in the country. The teenage pregnancy rate is 61.4 per 1,000 girls, 11% of babies are born low birth weight, and 28-30% of the children under age 5 live in poverty (Annie E. Casey Kids Count Data Center, 2009; DC Campaign to Prevent Teen Pregnancy, 2010; DC Kids Count, 2009; NCCP, 2008). In DCPS 66% of children receive free or reduced lunch, 19% receive special education and related services and less than 50% of students passed reading and math assessments in grade 3, 8 and 10(DCPS, 2010). Based on the 2005/2006 National Survey of Children with Special Health Care Needs, it is estimated that 14.7% (16,369) of the children in the District have special health care needs or about 22% of households with children. Children and youth with special health care needs in DC are more likely to be poor than their healthy counterparts--19.6% of children with no SHCN live below the federal poverty level vs. 30.4% of children with SHCN. (CAHMI, 2009b) Shortage of personnel with knowledge and skills: The increase in diversity and needs have coincided with an increase in personnel shortages (NCPSSERS, 2008). Seventy-six percent of states report shortages of related service providers (Bruder, 2006; Center to Inform Personnel Preparation, 2007). Shortages are most acute in diverse and high-poverty areas of the country like DC. Quality is also an ongoing issue, many providers do not have the expertise to serve children with high-needs and their families effectively. There is also a corresponding shortage of leaders to assume personnel preparation, research, administration, and policy roles (Clopton & Haselhuhn, 2009; Smith, et al., 2010; Washburn-Moses & Therrien, 2008; Woods & Snyder, 2009). Many disciplines not only report shortages of faculty, but of diverse faculty with the knowledge and skills to prepare new service providers in contemporary practices (Brueilly, et al., 2007; Clopton & Haselhuhn, 2009; Cosgrove, 2007; Smith, et al., 2010). Further, few leadership training programs emphasize the birth through 21 age range (Woods & Snyder, 2009). In DC, the leadership shortage is also felt. For example, The Interagency Coordinating Council has had difficulty in recruiting local qualified education and related service provider personnel to serve on this federally mandated advisory body. LEND-CN is a comprehensive training program providing DC and the surrounding metropolitan area with highly skilled leaders in the tenets of quality service provision to CND and SHCN and their families: Lotrecchiano, Gaetano R. comprehensive, interdisciplinary, family-centered, culturally and linguistically competent, and communitybased. Lack of quality training opportunities: Federally funded personnel preparation programs show promise in increasing the number of programs and affecting more than the targeted fellows (Kleinhammer- Tramill, et al., 2009). Gaps exist in determining if fellows acquired intended competencies, what roles they assume after program completion, and their effectiveness in these roles. Further, few personnel preparation training programs offer interdisciplinary post-graduate education focusing on leadership and CND (Woods & Snyder, 2009). LEND-CN follows the recommendations for quality leadership training programs that include providing a environment where students are supported and nurtured by expert faculty; use technology to expand learning; infuse learning into practicum experiences; support fellows to conduct and apply research; provide a context for professional development, ongoing mentorship, and collaboration with other experts (Applequist, et al., 2010; Long, 2006; NCPSSERS, 2008; Woods & Snyder 2009). LEND-CN incorporates models of training that have shown to increase competencies for service providers including a relationship based training program of mentorship and practicum experience with supervision and reflective practice (Applequist, et al., 2010). LEND-CN uses evidence- and competency-based leadership training methods and mentorship with expert faculty, families and community leaders to produce fully prepared leaders from the 13 disciplines targeted by LEND. LEND-CN is an in-depth experience in service, research and teaching with mentorship from expert faculty and local, state and national leaders. LEND-CN employs methods based in contemporary adult learning practices including, fellow-initiated and directed activities, didactic, and experiential learning, and professional development opportunities. Practicum experiences are required in community based, high need programs with diverse populations in terms of racial, ethnic, language, disability, and socioeconomics. The program emphasizes a supportive, relationship-based, reflective mentorship experience for each trainee to ensure they are meeting the competency areas. The program evaluates trainee learning based on competency area indicators as they participate in 6 integrated learning activities: didactic, applied learning, practice, engagement, scholarship, and specialization. At the completion of the program, trainees will have the leadership experience to transfer their knowledge to practice and mentor others as administrators, policy analysts, university instructors, researchers, and service providers for CND and SCHCN. Goals and Objectives. The principal aim of this project is to prepare trainees and fellows in the designated core disciplines for leadership positions in the field of pediatric neurodevelopmental disabilities. We have designed a curriculum that will serve as a model for provision of comprehensive, coordinated care to children presenting with neurodevelopmental disabilities (CND), and to their families. We provide didactic, experiential, and engagement opportunities. Opportunities emphasize experiences with different service systems, community collaborations, policy development and systems change. We promote trainee participation in the delivery of continuing education to community service providers. We disseminate new findings and perspectives through professional and consumer publications as well as in-service presentations. We guide our advanced trainees to undertake clinical investigative research in human development and development disabilities. At the completion of our interdisciplinary training program, we expect our trainees to meet the following objectives: Understand clinical issues relevant to providing exemplary interdisciplinary services Demonstrate the knowledge, attitudes and skills needed to provide exemplary person-and familycentered, case-coordinated, community-based, culturally and linguistically competent service delivery, technical assistance and consultation (both case-and program-based). Read, critically evaluate, and translate into meaningful action research literature pertaining to leadership, child development, health and wellness, disease and disability, integrated health services delivery systems, advocacy, public policy and relevant non-research literatures, and contribute to this body of activities. Describe, interpret and apply knowledge of current regulations, entitlements, court decisions and controversies relevant to services to CND and their families. Assume a leadership role in health care and related systems that serve CND. Methodology The curriculum is designed to meet the individually defined needs of advanced trainees and postgraduate fellows who present with diverse background experiences, professional goals and career plans, Lotrecchiano, Gaetano R. and with specialized advanced training objectives. The core interdisciplinary curriculum consists of core knowledge acquisition, related cohort activities, and structured engagement programs. Core knowledge acquisition and activities-based learning (Didactic, Application, and Scholarship): Overview of Neurodevelopmental and Related Disabilities Interdisciplinary Frameworks and Methods for Cross-Cultural Competence Coordination of Services through Interdisciplinary Care Management Leadership Training for Administration of Health Services for Children with SHCN Research in Neurodevelopmental and Related Disabilities Special Topics in Developmental Disabilities Engagement and Interdisciplinary Practica (Engagement, Practice and Specialization): Through engagement programs targeting family involvement, teaching and mentoring, and advocacy and policy activities trainees engage with CND and CSHCN populations. These supervised practica are structured and faculty supervised experiences. Interdisciplinary Team Dynamics: Fundamental Principles and Procedures Interdisciplinary Strategies for the Child within the Family System Public Policy and Contemporary Ethical Issues Influencing Services to CND Enhancing Teaching Skills Family Engagement Healthy People 2020 Objectives: The LEND at Children's National addresses the following HP 2020 Objective categories: Maternal, infant, child health, early and middle childhood, nutrition and weight status, mental health and mental disorders. Goal 1: Improve access to comprehensive, high quality health care services; Goal 6: Promote the health of people with disabilities, prevent secondary conditions, and eliminate disparities between people with and without disabilities; Goal 16: Maternal, infant, and child health; Goal 11: Health communication (quality health information sources); Goal 23: Public health infrastructure (access to information and surveillance data, continuing education). Coordination. The success of the LEND at Children's National over its first cycle is due to a number of factors related to its unique situation among multiple MCH and non-MCH funded stakeholders in the DC metropolitan area. As the founding center of the Mid-Atlantic Consortium of LENDs (VA, MD, DC, PA (CHOP), WV), we continue to look for ways to leverage resources across the region. Strategic planning began in the fall, 2010 to collaborate with the Title V agencies in DC during this next grant cycle. Our desire is to encourage participation with our LEND while providing much needed resources to what has been a historically fragmented system of agencies in the DC area. Evaluation. Our evaluation tools serve as an integrated system for monitoring scholar-practitioner development. From the information gathered through these instruments LEND at Children's National is able to monitor career development and readiness for future MCH professional growth, measure knowledge at the onset of training and throughout through training activities that help scholar-practitioners access knowledge. These also assist individuals in their self-reflection and information management for use during the LEND year as well as into the future. Trainee evaluation is based on documenting progress in attaining individualized goals reinforcing our belief that trainee interests, goals, and career aspirations are important to the developing scholar-practitioner. Simultaneously, as an interdisciplinary program utilizing adult learning principles, we learn from our scholar-practitioners and evaluate and design the program accordingly to meet those needs of the student.

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