|
Problem:
Since 1992, the LEND program at The Children's Hospital of Philadelphia (CHOP) has responded to MCHB priorities to improve the health and well-being of the maternal and child health populations. The National Survey of Children with Special Healthcare Needs found that less than 60% of children with special healthcare needs received all the health services they needed and only approximately half of children and families received coordinated, family-centered, culturally-competent interdisciplinary care within a medical home. Less than 10% received the services needed to make the transition to adult life. Furthermore, significant disparities in care exist with individuals who are poor or cultural or racial minorities often receiving fewer services. Individuals in poverty are also at increased risk for neurodevelopmental disabilities (NDD) and other chronic conditions. The CHOP-LEND, based in one of the largest populations of urban poverty in the country, both helps to decrease health disparities for children with, or at risk for, NDD and trains future leaders to address national health priorities and pressing local needs.
Advances in medical care assure the long-term survival of children with increasingly complex medical and neurodevelopmental needs. Effective, efficient, family-centered, and community-responsive care will require leaders who can partner with multiple stakeholders in improving systems of care. These leaders will need the critical thinking and research skills to develop and evaluate innovative programs. The CHOP-LEND provides this advanced interdisciplinary training to future leaders in a setting that values and rewards scholarship. During the current grant cycle (2001-2006) our faculty generated over 346 scholarly products in the field of Neurodevelopmental Disabilities and we produced 89 Long-Term and 377 Short-Term trainees.
Goals and Objectives:
The mission of our LEND program is to improve the health and well-being of children and youth with, or at-risk for, NDD and their families by providing interdisciplinary leadership training, developing new knowledge, and improving the public health infrastructure. In our application we specify 6 goals and 24 objectives. As per the guidance we specify 5 goals and 10 objectives below.
Goal: Prepare LEND fellows to address the complex needs of children with, or at risk for, NDD and their families by providing a comprehensive exploration of these conditions and relevant issues.
Objective Each fellow participates in a comprehensive interdisciplinary didactic/seminar series addressing normal neurodevelopmental processes, and the gamut of NDD and related disorders, with relevant issues such as public health models of prevention and health promotion; ethics, advocacy and others addressed.
Objective Equip fellows with the knowledge, skills and attitudes essential to promote interdisciplinary approaches to the care of this population of children and families.
Goal: 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 Equip fellows with the knowledge, skills and attitudes to better practice interdisciplinary, family-centered, culturally and linguistically competent, and community coordinated care.
Objective Ensure that each fellow participates in intensive, interdisciplinary clinical learning experiences that promote their ability to recognize the interdependence of all disciplines, family members, and individuals with disabilities in the decision-making process.
Goal: Prepare LEND fellows to have the leadership skills essential to implement systems-level change.
Objective Provide didactic and experiential training in participatory action research, conducting needs assessments, program development, evidence-based medicine, health care interventions, qualitative and quantitative methodologies, and program evaluation.
Objective Provide didactic and experiential training in communication skills, mentoring and conflict resolution in professional, leadership, and interdisciplinary contexts.
Goal: Evaluate program effectiveness and implement quality improvement strategies to improve the fellowship program
Objective Evaluate each fellow’s achievement of program training objectives.
Objective Determine the impact of LEND training on long-term career outcomes of former fellows by having them complete the LEND/UCEDD Long-Term Trainee Follow-up Survey yearly for the first 10 years post training.
Goal: Collaborate with and provide educational resources, consultation and technical assistance to health and related care professionals, Title V programs, community agencies, proposed or existing MCH/CSHCN programs, governmental programs, professional organizations, advocacy agencies, and/or private foundations
Objective 6.1 Provide at least one substantive continuing education activity per year.
Objective 6.2 Provide consultation/technical assistance to state and local government, Title V programs, and community organizations.
Methodology:
Our curriculum has 5 required components for all long-term trainees: 1) 12 Core Courses that comprehensively cover NDD, interdisciplinary care, family-centered care, cultural competence, leadership skills, partnership-based research skills, public health, communication and teaching skills; 2) Community-Based Interdisciplinary Clinical Rotations meeting the needs of underserved communities; 3) the Community Education & Liaison Program including community-based projects and presentations to community-based parent or professional groups; 4)the Family Collaboration Program which enhances fellows’ understanding of family perspectives and provides experiences collaborating with family members of children with NDD; 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 f) elective interdisciplinary experiences with Title V clinics (Cerebral Palsy, Spina Bifida, Sickle Cell Anemia, Special Immunology; Genetics Counseling programs) and other clinical programs.
Coordination:
Our LEND program has ongoing collaborations with the state-level Title V offices regarding the development of 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, services for children with autistic spectrum disorders, 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, spina bifida, cystic fibrosis, and hematologic disorders.
Evaluation:
We conduct evaluation at two levels:
Program Evaluation: We monitor the geographic, racial/ethnic and professional distribution 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 as measures of program success. Our Curriculum Committee regularly elicits systematic feedback from the faculty, guest speakers, and current trainees (via our Fellows’ Forum). We also actively solicit feedback from relevant Title V and other community-based collaborators, care providers, and consumers of our services via the LEND Community Advisory Committee.
Trainee Evaluation: Upon entering our program, each fellow develops an Individualized Training Plan (ITP), outlining each fellow’s unique plan for meeting the program’s objectives. The fellow’s progress towards meeting these goals is monitored by the Curriculum Committee, which issues quarterly progress reports to the fellow and the fellow’s Discipline Director.
|
