Grant Status: Active
Grant Title: The UMMS-Shriver Center Leadership Education in Neurodevelopmental Disabilities (LEND) Program
Carol Curtin, PhD
Research Assistant Professor
Family Medicine and Community Health, Eunice Kennedy Shriver Center
University of Massachusetts Medical School
465 Medford Street, Suite 500
Charlestown, MA 02129
Children with ASD/DD experience many health disparities which persist due to inadequate numbers of trained professionals and poorly coordinated health and service systems. We train leaders to provide exemplary care and to create integrated, family-centered, and culturally competent systems of care.
Goal 1: The Advanced Leadership Fellowship Program will increase the number of leaders who are well-prepared to create and lead responsive systems of community-based care and supports for children & families. Objective 1: To recruit ten (10) long-term Fellows on a yearly basis who represent at least 5 MCH core disciplines. At least 30% will be from racial/ethnic minority populations and at least 30% will also be parents/family members of persons with ASD/DD. Objective 2: By the end of each year, all (100%) Fellows will complete the intensive didactic and experiential/field-based leadership program and will demonstrate successful acquisition of the knowledge and skill competencies outlined in this application. Objective 3: To collaborate with at least three (3) other MCHB-funded programs in joint interdisciplinary training endeavors on a yearly basis. Goal 2: The Leadership in Clinical Care Program will increase the number of well-trained clinicians to deliver quality family-centered/culturally competent care to children with ASD/DD and their families. Objective 1: To train at least 15 long-term clinical trainees, 70 intermediate and 12 clinical short-term trainees within interdisciplinary clinical settings on a yearly basis. Objective 2: All clinical trainees (100%) will receive clinical training in disciplinary and interdisciplinary screening, diagnosing, and/or employing evidence-based interventions for young children with ASD and DD and their families. Objective 3: To train 1 long-term and 3 intermediate trainees in nutrition to deliver health promotion and lifestyle management services for children ASD and DD and their families. Goal 3: Via community education, we will increase the knowledge and skills of professionals, families, and others to serve individuals with ASD/DD in a family-centered and culturally-competent manner. Objective 1: To deliver a minimum of 80 in-person trainings/continuing education programs on an annual basis on topics of identified need, including screening, diagnosis and evidence-based treatments for youth with ASD/DD. Objective 2: To develop and deliver on-line training to at least 1,000 professionals and/or family members on a yearly basis in areas that address the needs of MCH populations. Objective 3: To collaborate on a yearly basis with at least three (3) colleges/universities to offer consultation and/or coursework to expand curricular content on ASD and DD. Goal 4: To provide clinical services that directly benefit children with ASD and DD. Objective 1: Within the context of our interdisciplinary clinical training programs, to provide evaluation and intervention services to at least 2,000 children and their families each year Objective 2: Within the context of our health promotion work, to deliver nutrition education, physical activity programming, and/or weight-loss or management consultation to at least 35 children and adolescents with ASD and DD on a yearly basis. Goal 5: To provide technical assistance, consultation, and advocacy to improve clinical practice and service systems that impact the lives of people with ASD and DD. Objective 1: On a yearly basis, faculty and trainees will participate as consultants, advisors, reviewers, or board members to at least thirty (30) organizations, coalitions and/or task forces that address the needs of children and their families. Objective 2: Each year, faculty and trainees will disseminate a minimum of 250 informational products relevant to both professionals and families of children with ASD and DD in the form of newsletters, information/research briefs, professional publications/abstracts, web-disseminated newsletters, and via social
The Leadership in Clinical Care program focuses on exemplary interdisciplinary clinical training for individuals in pre-service programs pursuing masters or doctoral degrees in specific clinical disciplines. Training takes place at the Tufts Medical Center, Boston Medical Center, the University of Massachusetts Medical School. Trainees receive in-depth interdisciplinary training on evidence-based practices for children with ASD/DD. They are involved in team evaluations, attend interdisciplinary seminars, accompany faculty to school and community meetings, visit families in their homes, and do presentations on clinical issues or relevant research. The Advanced Leadership Fellowship program is an intensive 9-month program for experienced clinicians and family members to bring about systems change. Trainees receive advanced leadership training to equip them to influence policy and legislation at local, regional, and national levels. The curriculum includes didactics and field-based projects that address the concepts of interdisciplinary services, applied research, systems thinking and analysis, systems change, and the influences of policy on funding and funding on policies. Advanced Leadership Fellows have the option to pursue a Masters Degree in Public Administration in Disability & Health from Suffolk University. Both programs hold a life course perspective on health and disability, and seek to eliminate health disparities and social disadvantage among all MCH populations.
State agencies include DPH, DMH, DDS, DMA, DOE, other MCHB funded training programs, including the MCH-funded Developmental-Behavioral Pediatrics Fellowship Program at Boston Medical Center and the MCH division of Boston University's School of Public Health. Technical assistance, collaboration, and leadership training is provided to these state agencies. In addition, consumers and staff from local, regional and national agencies as well as the MCHB programs sit on the LEND advisory board.
We track the following to assess our progress/outcomes: data points defined by our goals/objectives; trainees' acquisition of knowledge/skills; progress on MCHB Performance Measures. We use NIRS to capture, track, and report on training activities, activities of former trainees, TA and dissemination activities. Trainees provide online evaluations of courses/seminars. LEND faculty meet regularly to review trainee progress, problem-solve concerns that arise, and modify the curriculum as needed.