Health Care

The ICI’s Health Care focus stems from the original mission of the University Centers for Excellence in Developmental Disabilities, or UCEDDs, the national network we are part of. UCEDDs grew from groundbreaking legislation signed in 1963 by President Kennedy that supported the creation of university-based facilities to conduct interdisciplinary training, research, and dissemination. UCEDDs were also tasked with providing technical assistance to enhance the lives of children with intellectual and developmental disabilities (IDD) and their families. That was the beginning of the ICI’s work at Boston Children’s Hospital.

Our current work continues what has become our major health care emphasis: training health care professionals, families, and self-advocates in the field of neurodevelopmental disabilities. In addition to training, our faculty provide technical assistance to community programs, offer continuing education opportunities, conduct applied research, and disseminate information. We also provide direct services via model clinical programs.

This work is centralized at Boston Children’s Hospital but includes programs that reach across the state, region, and country, as well as international projects.

Featured projects of the Health Care programs include:

Leadership Education in Neurodevelopmental and Related Disabilities (LEND) program. The LEND program provides interdisciplinary training to health care professionals, self-advocates, and family members of children with IDD. LEND fellows undertake a 400-hour leadership training program that includes classroom instruction, making community connections, and engaging in clinical and research experiences. LEND faculty also provide clinical services, conduct research, and offer continuing education and technical assistance to community-based programs and health care providers.

Down Syndrome Program. The Down Syndrome Program offers specialized services for children with Down syndrome and their families. Program staff work closely with children, parents, medical specialists, community physicians, and educators. Founded in 1967, the program is located in the Division of Developmental Medicine at Boston Children’s Hospital.

The Community Education Initiative (CEI). CEI is a program supported by the LEND Program and Medicine Patient Services at Boston Children’s Hospital. It provides opportunities for school nurses and community providers to learn about pediatric clinical practice, mental health, and holistic/wellness approaches to caring for children and staff. Program formats include conferences, online courses, evening sessions, and in-person programming at schools.

MASSTART. MASSTART is supported by a collaboration with the Massachusetts Department of Public Health. Through this service, nurses at Boston Children’s Hospital help families and schools plan for the health care and safety of children with special health care needs, especially those who are assisted by medical technology, so they can attend schools safely. MASSTART nurses attend IEP and 504 meetings, do home visits, and work with families and school staff to develop an individualized heath care plan. Training also is provided to school staff in medical technology.

The D43 Fogarty International Center/National Institute of Health (FIC-NIH) “International Bioethics Research Post-Doctoral Training (IBRT) – C. Asia Network.” This is an interdisciplinary research training program over a 5- year period in partnership with four leading national medical universities in low- and middle-income countries (LMICs) in Central Asia: Azerbaijan, Kazakhstan, Kyrgyz Republic, and Uzbekistan. The program serves as a comprehensive model for understanding and studying bioethics research topics. The trainees implement mentored in-country bioethics research projects relevant to LMIC health needs and priorities.

The R01 Fogarty International Center/National Institute of Mental Health (FIC/NIMH) “Optimizing Prevention Approaches for Children Reintegrating from Orphanages in Azerbaijan.” This research grant is a collaboration between investigators at the University of Chicago, at Boston Children’s Hospital, and in Azerbaijan. The goal is to evaluate three adapted evidence-based interventions for the prevention of mental health problems among 6- to 12-year-old children from orphanages reunited with their families. The team builds capacity around cultural adaptation, as well as implementation and testing of interventions. This project presents an innovative economic empowerment component and strong capacity building plan.