Funded Projects

Problem:

Many children with neurodevelopmental disabililties (NDD) do not receive needed healthcare and disparities in care exist. Providing all children with NDD effective, family-centered and community-responsive care requires leaders who can partner with multiple stakeholders in improving systems of care

Goals and Objectives:

Goal 1: Prepare LEND fellows to address the complex needs of children with, or at risk for, NDDs and their families by providing a comprehensive exploration of these conditions and relevant issues. Objective 1: Each fellow participates in a comprehensive interdisciplinary seminar series addressing normal neurodevelopmental processes, and the gamut of NDD and related disorders, with relevant issues such as public health, ethics, advocacy and others addressed throughout the training year. Objective 2: Each fellow receives intensive, long-term supervised clinical experiences within their respective disciplines throughout the training year Objective 3: Equip fellows with the knowledge, skills and attitudes essential to promote interdisciplinary approaches to the care of childrenw with NDD and their families by the end of the training year Goal 2: Prepare LEND fellows to have the knowledge, skills, and attitudes essential to partner with diverse families and community providers in the care of children with NDD. Objective 1: Equip fellows with the knowledge, skills and attitudes to better practice interdisciplinary, family-centered, culturally and linguistically competent, and community coordinated care by the end of the training year. Objective 2: Ensure that throughout the training year each fellow participates in intensive, interdisciplinary learning experiences that promote their ability to recognize the interdependence of all disciplines, family members, and individuals with disabilities in the decision-making process. Objective 3: Provide exemplary, interdisciplinary, mentored clinical experiences in the provision of family-centered, culturally and linguistically competent, and community coordinated care throughout the training year. Goal 3: Prepare LEND fellows to have the leadership skills essential to implement systems-level change. Objective 1: Provide didactic and experiential training in participatory action research (PAR), conducting needs assessments, program development, evidence-based medicine & healthcare interventions, qualitative and quantitative methodologies, program evaluation throughout the training year Objective 2: Increase fellows' ability to integrate prior empirical research, theoretical constructs, and information gathered from new technologies with information learned from community partners in PAR to generate testable research hypotheses for the research project completed by the end of the training year. Objective 3: Provide didactic and experiential training in advocacy and improving systems of care regarding children with NDD and other underserved populations throughout the training year. Goal 4: Evaluate program effectiveness and implement quality improvement strategies to improve the LEND fellowship program Objective 1: Evaluate each fellow's achievement of program training objectives on a quarterly basis Objective 2: Evaluate fellows' self-perceptions of increased knowledge and skills by surveying each fellow's perceived competence in the domains addressed by the LEND training objectives prior to the start of the training year, and again following completion of LEND training. Objective 3: Systematically evaluate the Core Curriculum and implement a continuous quality improvement plan throughout training Goal 5: Collaborate with and provide technical assistance (TA) to healthcare professionals, Title V programs, community agencies, governmental programs, professional organizations, advocacy agencies. Objective 1: Provide at least one substantive continuing education activity per year. Objective 2: Provide consultation and technical assistance to state and local government on an ongoing basis. Objective 3: Provide consultation and technical assistance to Title V programs, other community maternal-child health agencies, professional organizations and advocacy organizations on an ongoing basis

Methodology:

The Children's Hospital of Philadelphia (CHOP) LEND curriculum has 5 required components for all long-term trainees: 1) 12 Core Courses that acomprehensively cover NDD, interdisciplinary care, family-centered care, cultural competence, leadership skills, partnership-based research skills, public health communication and teaching skills; 2) The Community Collaboration & Advocacy Program including community-based projects and presentations to community-based parent or professional groups in conjunction with an advocacy action; 3) the Family Collaboration Program wich enhances fellows' understanding of family perspectives and provides experiences collaborating with family members of children with NDD; 4) the LEND Assessment Clinic which involves interdisciplinary clinical evaluations of children with NDD and related disabilities; and 5)the LEND Research Leadership Program, which involves mentored research activities that culminate in the completion of a research project and its formal presentation. LEND also offers many elective interdisciplinary experiences with Title V clinics (Cerebral Palsy, Spina Bifida, Sickle Cell Anemia, Special Immunology; Genetics Counseling) and other clinical programs.

Coordination:

CHOP LEND has ongoing collaborations with the state Title V offices regarding transition to adulthood services and the care of individuals with traumatic brain injury. We collaborate with multiple state and local agencies on projects related to the medical home, mental health services for children, improving access to care for medically underserved children and others. We provide direct services to several Title-V supported populations, including children with cerebral palsy and spina bifida.

Evaluation:

We monitor the diversity of our applicants as indices of our success in recruiting appropriate candidates of diverse backgrounds. We have developed self-report measures for LEND core competencies that are administered pre- and post- LEND training. We survey former fellows yearly to follow the long-term professional career paths of our graduates. Our Curriculum Committee receives feedback monthly from current trainees via our Fellows' Forum