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Problem:
The prevalence of developmental disabilities is increasing. Healthcare systems are ill-designed to address the needs of people with disabilities. The UCLID Center forges partnerships of University, Community, Leaders, and Individuals with Disabilities to nurture leaders in the field of disabilities.
Goals and Objectives:
Goal 1: Provide intensive interdisciplinary leadership education for health care and education professionals to improve health care for children and adults with disabilities and their families.
Objective 1: Enroll 10 UCLID Fellows and Trainees
Objective 2: Evaluate and improve the UCLID “integrated interdisciplinary leadership curriculum”
Objective 3: Demonstrate the importance of interdisciplinary training in neurodevelopmental disabilities and related disorders
Goal 2: Provide leadership for professionals in training and in practice to increase their knowledge and skills about disabilities and to create positive attitudes about inclusion
Objective 1: Enroll 10 students in research, clinical, and community practicums
Objective 2: Enroll 8 students in interdisciplinary courses over a 5-year period.
Objective 3: Provide at least one annual continuing education program for health professionals
Goal 3: Forge partnerships with community organizations, advocacy groups, and individuals with disabilities for training, program development and evaluation, research, policy development, and systems change.
Objective 1: Expand the membership of the Community Advisory Board
Objective 2: Formalize the use of family members and self-advocates as faculty in UCLID training
Objective 3: Collaborate with Title V programs in the Bureau of Family Health. and with the Disabilities Determination Service of the Social Security Administration in Pennsylvania.
Goal 4: Disseminate information about children with disabilities, leadership programming, public policy, and UCLID programs to a national audience.
Objective 1: Provide at least one web-based continuing education program for health care professionals per year
Objective 2: Disseminate information on public policy as well as basic science, clinical science, and best practices through professional publications, presentations at national conferences, distance learning techniques and the UCLID Web site.
Methodology:
UCLID Core Faculty is comprised of 15 health care and education professionals, all of whom are full time or adjunct faculty at the University of Pittsburgh. Three members are parents of children with disabilities or chronic special health care needs, one has a disability, and one is a member of an underrepresented minority. In addition, 24 auxiliary faculty members provide lectures, clinical participation or mentorship of trainees. The University Community Partnership has 17 members who contribute to leadership training, conference presentation, and evaluation. Our faculty teach interdisciplinary courses to meet the competencies of the MCHB curriculum. For example, a weekly seminar series, entitled, “Systems of Care for Children with Disabilities”, addresses the opportunities, challenges and controversies in the field of disabilities. The topics include systems of care, Healthy People 2010 objectives, health disparities, and recommended practices. The UCLID Interdisciplinary Clinical Program offers in-depth evaluation for children with a variety of disabilities, family constellations, and cultural backgrounds. The clinic operationalizes the concept of family-centered care by encouraging families to set the clinical agenda and by individualizing the evaluation to address their concerns. The UCLID website includes a Regional Resource Center for children and adults with disabilities in western Pennsylvania, eastern Ohio, and northern West Virginia.
Coordination:
The University Community Partnership provides a central mechanism for coordination with regional and local health agencies and organizations. Our website serves as an internal method of coordination as well as a link to national organizations and a service for children and families in the region.
Evaluation:
The University Community Partnership evaluates the regional impact of UCLID Center activities. An Oversight Committee comprised of the Assistant Provost for Research, Deans or Associate Deans at the University, and community members meets annually to evaluate university impact. We will constitute a group of external advisors to review our progress reports as part of the evaluation of national significance.
Experience to Date:
Enrolled 13 long-term trainees and 31 intermediate trainees. Enrolled 8 dental students as intermediate trainees. Hosted an interdisciplinary workshop, "Entitlement to Eligibility: Pathways and Possibilities", regarding the transition of youth with disabilities to adulthood. Created "Oral Health Tutorial" at www.oralhealthtutorial.org, for non-dental professionals to learn about oral health. In collaboration with the Title V in PA, created "Early Hearing Detection and Intervention", an on-line educational module for physicians and their staff when a child fails the newborn hearing screening. Developed a tool based on the International Classification of Functioning, Disability and Health (ICF) to assist youth with disabilities and their families in transitioning to adulthood. Experienced an outstanding year in terms of the production of peer-reviewed articles, non-peer-reviewed articles, chapters and other educational materials for a national and international audience.
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