National Center for Children and Youth with Disabilities Launched
$4-million grant awarded to Institute for Community Inclusion, a partnership between Children's Hospital Boston and University of Massachusetts Boston
October 20, 2006
A national center to pilot interventions for underserved children with disabilities and special health care needs was launched today, announced the Institute for Community Inclusion (ICI), a partnership between Children's Hospital Boston and University of Massachusetts Boston. The $4-million grant will fund a five-year plan to open the doors of opportunity for children with special health care needs and disabilities through the newly formed National Center for Children and Youth with Disabilities and Special Health Care Needs. Called "Opening Doors" the national demonstration project is funded by the National Institute on Disability and Rehabilitation Research (NIDRR) in the U.S. Department of Education.
The grant will fund collaboration among families, community-based organizations, disability organizations, recreational centers, schools, clinics, and community health centers to better connect families to services earlier, improve access to Boston's recreational opportunities, and enable youth with disabilities and special needs to more readily pursue post-secondary education and job training.
"Our core mandate is to provide the best possible care for all children," says James Mandell, MD, president and CEO of Children's Hospital Boston. "Since medical technology has improved and enhanced the possibilities for children with disabilities, we must provide every child in every neighborhood the support they need to transition to adulthood."
"As a higher educational institution committed to the academic and professional development of a diverse student body, we have a track record of success in educating young adults with disabilities that we believe can serve as a national model," says Michael F. Collins, MD, chancellor of the University of Massachusetts Boston. "We look forward to being able to expand on these efforts and develop best practices."
The center will focus its efforts on children in underserved populations. The latest national estimates show that at least 13 percent of children in the United States have or are at risk for physical, developmental, or emotional conditions that require higher levels of service. Children who live in poverty are at even higher risk for the development of these disabilities because health factors found in underserved areas, such as malnutrition, anemia, physical and mental illness, substance abuse, and domestic violence frequently contribute to the development of disabilities.
"Boston will benefit from an infusion of resources and support to help these children to grow into and thrive in adulthood. The ultimate goal is to develop a successful program that could be replicated across the country," says Judith Palfrey, MD, chief of General Pediatrics at Children's Hospital Boston and the principal investigator for the study.
The National Center for Children and Youth with Disabilities and Special Health Care Needs was formed to respond to three areas of particular need:
Transition to adulthood: Advances in health care, assistive technologies, and pharmaceuticals can now help youth and young adults with disabilities live into adulthood. For example, the average age of death from cystic fibrosis was 6 months in 1938. By 1998, the average life expectancy climbed to 32, but youth find a dearth of social, educational and clinical services to help address this transition into adulthood. A recent national report showed that less than 6 percent of children with special health care needs have the health care, post-secondary education, work, and community support necessary to successfully transition into adult life.
The center will provide research, training, and technical assistance to address these pressures and help build the self esteem, confidence, and leadership skills of youth with disabilities so they may be competent, independent and fulfilled adults.
Access to community recreational activities: Children and adolescents with disabilities and special health care needs have a limited range of opportunity for activities and socialization, and children at the nexus of disability and poverty have particular constraints in accessing recreation and physical activity. The Healthy People 2010 report showed that more than half of adults with disabilities engaged in no leisure time physical activities. This limited access can contribute to ill health, poor self-esteem and mental health concerns.
The center will locate and train volunteers from local schools and the community who will spend time every week with children who have disabilities and special health care needs, involving them in exercise activities both at home and in community recreation centers. In addition, the center will provide training for community recreation centers on accommodating and working with people with disabilities and special health care needs.
Screening and early identification: The best possible outcomes for children with developmental delays occur when intervention happens as early as possible. Currently, fewer than 10 percent of pediatric practices use validated screening tools to identify children with developmental disabilities, and only 20 to 30 percent of children with disabilities such as speech and language impairments, mental retardation, learning disabilities, or emotional and behavioral disturbances are identified prior to school. In addition, the average time between first concern and identification of the problem has been shown to be longer for children from low income or minority families.
The grant will fund a demonstration program that will integrate a proven, standardized developmental screening method into the pediatric primary care system at Martha Eliot Health Center in Jamaica Plain, Mass.
The center's focus on children and youth in underserved communities mandates the input of community-based organizations in designing and executing the programs it will run. Key collaborators include: The Massachusetts Consortium for Children with Special Health Care Needs, the Parent Advocacy Coalition for Education Rights (Minnesota) and the YMCA of Greater Boston. Additionally, ICI will leverage its long-standing relationships with many community-based organizations in Massachusetts.
The community-based organizations working with ICI include:
- Boston Chinatown Neighborhood Center
- Eritrean Community Center
- Ethiopian Community Mutual Assistance Association
- Haitian American Public Health Initiative
- Latin American Health Institute
- Massachusetts Alliance of Portuguese Speakers
- Massachusetts Asian and Pacific Islanders for Health
- Somali Development Center
- Sudanese American Integration and Development Center
- Universal Human Rights International
"For this effort to be a success, we need to provide insight into how to communicate and educate people who come from different backgrounds," said Abdiraham Yusuf, executive director of The Somali Development Center, and chair of the Community Advisory Committee for Opening Doors. "I am excited that so many grass root neighborhood organizations have been involved from the ground up."
Children's Hospital Boston is home to the world's largest research enterprise based at a pediatric medical center, where its discoveries have benefited both children and adults since 1869. More than 500 scientists, including eight members of the National Academy of Sciences, nine members of the Institute of Medicine and 11 members of the Howard Hughes Medical Institute comprise Children's research community. Founded as a 20-bed hospital for children, Children's Hospital Boston today is a 347-bed comprehensive center for pediatric and adolescent health care grounded in the values of excellence in patient care and sensitivity to the complex needs and diversity of children and families. Children's also is the primary pediatric teaching affiliate of Harvard Medical School. For more information about the hospital and its research visit: www.childrenshospital.org.
Established in 1964, UMass Boston prides itself on providing challenging teaching, distinguished research, and extensive public service to Boston and the Commonwealth. Through its six colleges-Liberal Arts, Science and Mathematics, Management, Nursing and Health Sciences, Public and Community Service and Graduate College of Education-the McCormack Graduate School of Policy Studies, and the Division of Corporate, Continuing, and Distance Education, UMass Boston offers undergraduate and graduate study in more than 150 fields. For more information, please see www.umb.edu.
The Institute for Community Inclusion (ICI) promotes the inclusion of people with disabilities in their communities through training, consultation, clinical and employment services, and research. ICI is based at the University of Massachusetts Boston and Children's Hospital Boston. www.communityinclusion.org.