When Elizabeth Bostic of Reading saw her
entire family playing together on a playground for the first time this fall, she could barely contain herself. Since the day her son, James, who has cerebral palsy, was born, a family outing like this had only been a dream. It wasn't until James turned 6, and Bostic's efforts to help build a playground equipped for disabled children were complete, that James could play alongside his parents and 14-year-old sister, Maritza. "I tried not to cry throughout the whole thing," she says of their trip to the playground.
The fact that Bostic needed to take matters into her own hands to get the handicapped playground built is indicative of a common problem among parents of children with chronic medical problems and disabilities. All too often, these families don't have the resources they need to help their children lead full lives. And the number of affected people is surprisingly high: Studies show that about 10 million families in the United States have a child with physical, developmental or emotional disabilities and chronic medical problems.
That's why Children's Hospital Boston helped launch Opening Doors, a project dedicated to finding ways to help children with disabilities—as well as those who care for them. The project, which just launched this fall, was created through the newly formed National Center for Children and Youth with Disabilities and Special Health Care Needs, and aims to demonstrate the ways communities and health care organizations can improve the resources available to children with disabilities. Clearly, Opening Doors is a huge undertaking, and involves many organizations besides Children's, including the Institute for Community Inclusion and University of
The project's five-year plan has three main objectives. One is to figure out how to best help special-needs children transition into independent or assisted adult life. There's a growing need for this kind of public assistance since an unprecedentedly high number of children with disabilities are now surviving into adulthood—without access to "door-opening" experiences like college, jobs or even social outlets. So Opening Doors is studying how to create the networks necessary to help them lead fuller, more independent lives as they age into their adult years.
A second objective is researching how to promote early intervention services for newborns with disabilities and studying the effects of early screening for developmental delays. Opening Doors' theory is that prompt detection will, in turn, lead to more effective treatments for children facing developmental hurdles. The idea will get tested in the primary care center at the Martha Eliot Health Center in Jamaica Plain, which is owned and operated by Children's.
A third major goal on Opening Doors' agenda is finding ways to improve a child's health and well-being by giving them access to—and enhancing their ability to use—community recreational areas. Not only will Opening Doors work to find ways to make facilities more accessible for children, it will also create training programs for volunteers who can go out and physically help parents assist their child while he or she plays.
One of the overriding questions the project will address is how best to create all of these opportunities for families in underserved areas. It's focusing on children living in poorer communities in particular, since children living in poverty are at a much higher risk for developing disabilities because of health factors like malnutrition, anemia, physical and mental illness, substance abuse and domestic violence.
Since Opening Doors is the first project of its kind in the country, many health care centers, community leaders and policy makers are eagerly anticipating its findings. If the results are strong enough, the effects could be huge. "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 and principal investigator for the study.