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Problem:
This LEND project will improve the health of infants, children and adolescents with, or at-risk for, neurodevelopmental and related disabilities through interdisciplinary preparation of trainees from a wide range of disciplines for leadership roles and at the highest levels of clinical competence.
Goals and Objectives:
Goal 1: Prepare graduate level professionals to provide quality, comprehensive, community-based, family-centered, culturally sensitive care to infants, children, and adolescents with NDD and their.
Objective 1: Refine, adapt, improve and implement current exemplary, competency-based leadership curriculum that identifies needs throughout the lifecycle to promote healthy growth and development of children with NDD and emphasizes integrated, family-centered health care systems.
Objective 2: Target trainee recruitment on highly qualified students from diverse communities and backgrounds.
Objective 3: Develop, implement and evaluate a family mentoring program that introduces trainees from all disciplines to the daily experiences and responsibilities of raising a child with special healthcare needs; family members develop and teach the curriculum.
Goal 2: Through innovative continuing and community education, support the efforts of systems of care providers and others to care for children with NDD and other special health care needs.
Objective 1: Strengthen integrated systems of care by reinforcing and expanding knowledge, skills and leadership abilities of professionals serving children with NDD and their families, through continuing education and development.
Objective 2: Expand the knowledge, skills, and leadership abilities of families, direct support staff, paraprofessionals, policy makers and the general public about the needs of children with NDD.
Goal 3: Through collaboration, technical assistance, and advocacy foster the development of local, state, and national integrated systems of care for children with NDD and their families.
Objective 1: Model and facilitate collaboration with Title V and related agencies on the national, regional, state, and local levels to enhance integrated systems of care that improve health outcomes for children with NDD and their families.
Objective 2: Model and facilitate collaboration with other agencies on the national, regional, state, and local levels to enhance integrated systems of care that improve outcomes for children with NDD and their families.
Objective 3: As part of a broad state collaborative, ensure that the needs of individuals with NDD and related disorders and their families are addressed in emergency preparedness plans related to earthquakes, tornadoes, floods and other natural disasters.
Goal 4: Teach the universal and unique needs of MCH populations throughout the life cycle and identify and be responsive to present and emerging issues.
Objective 1: Develop training, service and research components to focus on unique family structures such as relative caregivers, foster care families, sibling needs, parents with intellectual disabilities, single parents, minority families, aging parents of adults with NDD, and teen parents.
Objective 2: Plan, implement, and evaluate a national conference in collaboration with other LENDs, MCH partners, and aging agencies to highlight issues of older adulthood and later life for individuals with NDD and their families.
Objective 3: Use distance technology to link centers for joint panels, discussions, and seminars to stay abreast of current advances in life cycle needs.
Goal 5: Continue exemplary faculty development process.
Objective 1: Maintain full-time Family Faculty position to provide guidance and leadership to LEND faculty in family-centered, culturally sensitive services, public policy, advocacy and community partnerships; this essential faculty member provides perspective based on life experiences
Objective 2: Develop faculty-led seminar series on End of Life issues for local and regional use.
Objective 3: Enhance faculty development through collaborative translational research seminar series including: basic science researchers, clinical researchers, public health professionals and families; promote seminar series for local, regional, and national dissemination to Title V and related agencies.
Methodology:
The competency-based, core curriculum for all trainees builds current knowledge and skills and prepares leaders to: be true partners with family members, be able to evaluate and use scientific advances, and respond to emerging ethical and legal issues. Continuing education activities designed to strengthen integrated systems of care by reinforcing and expanding the knowledge, skills and leadership abilities of professionals, families, direct support staff, paraprofessionals and policy makers who serve children with NDD and their families. Collaboration with Title V and related agencies on regional, state and local levels are directed toward improving interrelated systems of care for children with NDD and their families in Tennessee and the nation. One focus is on the timely need for collaboration, state and national, to ensure the needs of children with NDD and their families are included in the development of emergency preparedness plans. Training, service and research includes special focus on unique family structures such as foster care families and relative caregivers. The project will plan, implement, and evaluate a national conference on issues of older adulthood and later life for individuals with NDD and their families. Some collaborators include: other LEND programs, MCH partners, Area Offices on Aging and families. Ongoing faculty development includes a fulltime family faculty member and interdisciplinary seminars on emerging issues.
Coordination:
All listed entities collaborate around training, service, policy and/or research: TN Departments of Health, Children's Services, Mental Health and Developmental Disabilities; TN Division of Mental Retardation Services; TN Governor's Office of Children's Care Coordination; Family Voices; TN DD Council; TN Disability Law and Advocacy; LeBonheur Children’s Hospital; St Jude Children’s Research Hospital; Vanderbilt University; the Universities of Arkansas, Oregon, Rochester; AUCD, SSA and others.
Evaluation:
Explicit evaluation procedures with quantitative or qualitative measures are used for each objective. Outcome measures are used in formative and summative evaluations. Evaluation data is collected and analyzed by the training coordinator, clinical coordinator, LEND faculty and project director. Required evaluation data is entered into the NIRS system.
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