Leadership Education in Neurodevelopmental and Related Disabilities (LEND)


Leadership Education in Neurodevelopmental and Related Disabilities (LEND)

Project Period :

07/01/2016 - 06/30/2021


HRSA: Maternal and Child Health Bureau

Role:  Nursing Discipline Coordinator

Principal Investigator:

Stephan Sulkes


PROBLEM: Children and youth with neurodevelopmental disabilities (NDD), including Autism Spectrum Disorders (ASDs), and other special health care needs in western New York (NY) State lack adequate access to effective services and supports that are family centered, culturally competent, community-based, cost-effective, and coordinated. Individuals with ASDs and other NDDs in urban and rural settings are especially underserved. Gaps in health care services to transition-age youth with special health care needs are also significant. Goals and Objectives: Goal I: Recruit leadership trainees from diverse backgrounds in 13 professional disciplines. [Objective] 1.1. Recruit and train an average of one long-term LEND leadership trainee per year in each of 13 MCH disciplines over the course of the project. 1.2. Recruit and train four new long­term "LEND ASD Fellows" (one advanced developmental-behavior pediatric fellow, one psychology postdoctoral fellow, one advanced practice nurse, and one doctoral-level speech-language pathologist) per year, to develop specific advanced expertise in diagnosis and treatment of ASDs by the completion of their training experiences. 1.3 Recruit and train 40 medium-term trainees per year in screening, diagnosis, and evidence-based treatments for ASDs. 1.4. Each year, recruit trainees from diverse cultural, linguistic, and ethnic backgrounds. Goal II: Assure that long-term trainees develop knowledge and skills to become MCH leaders. [For all Goal 11 objectives, Trainees will have advanced knowledge and skills in each competency area by the completion of training] 11.1. MCH System and topics related to ASDs and other NDDs. 11.2. Self-reflection. 11.3. Ethics and Professionalism. 11.4. Critical Thinking. 11.5. Communication. 11.6. Negotiation and Conflict Resolution. 11.7 Cultural Competence. 11.8. Family-Centered Care. q.9. Teaching and Mentoring. 11.10. Interdisciplinary Team Building. 11.11. Community and Systems. 11.12. Policy and Advocacy. Goal III: Develop and provide training and community education activities specific to ASDs. V.1. Provide all long-term LEND trainees curriculum emphasizing ASDs each year, using ASDs in LEND Core Course as models for didactic discussion. V.2. Ensure advanced screening, diagnostic, treatment, and research skills related to ASDs for LEND ASD fellows in pediatrics, nursing, psychology, and speech pathology, by the end of training. V.3. Ensure knowledge and skills related to ASD screening and intervention by the end of medium term training for physicians, nurses, and school staff. V.4. Collaborate with other groups in behalf of children with ASDs and their families each year. V.S. Support diagnosis and treatment of ASDs to underserved populations in the Rochester City School District and rural communities through medium term training each year. Goal IV: Support the MCH system. VI.I. Each year, SCDD LEND faculty and trainees will provide technical assistance and consultation to assist federal, state, and regional health care planners in ensuring coordinated, comprehensive, cost-effective and family-centered health care for children with ASDs and related NDDs. V1.2. Each year, SCDD LEND faculty and trainees will lead needs-based continuing education programs that assist federal, state, and regional health care personnel to acquire contemporary knowledge and skill about current and emerging clinical practices for children with ASDs and related NDDs. VI.3. Each year, provide technical assistance and continuing education through distance learning techniques such as on line courses and telemedicine consultation. METHODOLOGY: Long-term leadership training will take place at Strong Center for DD. Special efforts to improve diversity and cultural competence will be undertaken. A weekly Core Course will include research and administration training, research experiences, and seminars addressing the topic areas noted above. Cultural competence, family focus, a life course perspective, underserved populations, and the special issues of individuals with ASDs and youth in transition will be used as examples and themes throughout. Trainee practica will develop clinical expertise, interdisciplinary team skills, and communication, teaching, family focus, and leadership abilities. Advanced LEND ASD fellows will develop expertise in ASD diagnosis and evidence-based treatments, and participate in research and policy analysis in conjunction with the HRSA AIR-P project and the NY State Health Dept. ASD planning activities. Medium term ASD trainees will learn screening and evidence-based interventions. HP 2020 OBJECTIVES: AHS 3,5,6 (Access To Health Services), AH 5.2 (Adolescent Health), DH 4,5,8,9,10,14,16,20 (Disability and Health), EMC 2.4 (Developmental Screening), ECBP 12.2 (Diversity), HC/HIT 5 (Health Management Technology) MICH 29-31 (ASD and other Disability prevention, identification, and services, medical homes through transition years). COORDINATION: We will collaborate with 1) the NY State Dept. of Health and other northeastern US LEND programs in ASD awareness and training activities; 2) local health departments in specific efforts to improve the health of children and youth with ASDs and other NDDs; 3) the UR LEAH program in adolescent transition training and model programs; 4) Special Olympics International in Healthy Athletes prevention activities. EVALUATION: We will assess trainee data on progress toward training goals with pre/post tests, and track trainee career outcomes via 1-, 5-, and 10-year post-training surveys. We will track clinical impact using Kirch Center data and community impact through faculty reports and ASD-specific activity tracking. ANNOTATION: Rochester LEND will increase the number of professionals in western NY State who can effectively address the needs of children and youth with autism spectrum and related neurodevelopmental disorders through long-term and medium-term training in 13 disciplines, particularly emphasizing underserved urban and rural populations. Trainees will develop leadership skills through didactic and practicum activities in university clinic- and community-based settings, delivered both in person and via distance learning technologies, and emphasizing themes of family centered, culturally competent care, and using a life course model to address the needs of these populations. We will also collaborate with other programs in training, coordination, and research activities.