The parents of a healthy child can likely count on one hand the number of times their child needed to visit a doctor in the last year—most likely for a school physical, maybe a sore throat or an ear infection, or possibly a trip to the ER for a broken bone. But for the parent of a child with a disability, life is an endless calendar of appointments with specialists. These parents must navigate a complex, often confusing web of services to ensure that their children’s needs are addressed. Experts estimate that 9.4 million, or 18 percent, of US children have special health care needs such as chronic and complex medical, developmental, and neurological conditions.
To streamline and coordinate care for children with such conditions, Boston Medical Center’s Division of Developmental and Behavioral Pediatrics offers a broad range of services and treatments. These programs serve children facing significant developmental disabilities, complex medical needs, developmental language delays, attention deficit hyperactivity disorder, learning disabilities, autism spectrum disorders, anxiety disorders, and behavioral problems, among other challenges. Some of the division’s programs have a team member trained as a “family navigator” to help families understand and find available services, as well as address barriers to care and treatment.
“When we look at how family navigators most help families, it really is in the decrease of parental stress and depression,” says division director Marilyn Augustyn, a School of Medicine professor of pediatrics. “It’s very hard to have a child with a chronic disease. We have found that family navigators have really been critical in helping us support families by helping them identify a strategy to get around a barrier.”
“We know that families who have children with special health care needs have a level of stress that most of us who have children probably don’t appreciate,” says Bob Vinci, MED’s Joel and Barbara Alpert Professor of Pediatrics and pediatrics department chair and chief of pediatrics at BMC. “So we are building what we view as the medical home for these families….We welcome anyone on the Boston University campus to take advantage of our services, or if they have questions we are happy to point them in the right direction.”
Lucy Pignataro has come to depend on the BMC division’s programs not only to help manage the care of her six-year-old daughter, Sofia, but also to provide critical information and support. Sofia, who has Down syndrome and is on the autism spectrum, among other neurological disorders, is enrolled in the division’s Comprehensive Care Program (CCP).
“Every day the doctors tell me things I didn’t know about services I wish I knew about earlier,” says Pignataro. “I learn bits of information or talk to parents who are experiencing the same things I am, and that’s extremely important, because when you talk with someone who is basically navigating the system the same way you are, it helps, because they get it.”
Started more than two decades ago, when such programs were hard to find, the CCP continues to help families by coordinating a child’s numerous medical, social, educational, and mental health support services. “In the CCP, we work to make it a one-stop shopping model for patients and their families,” says Jack Maypole, CCP director and a MED assistant professor of pediatrics. “We are a team clinic that works to address the many, many needs of the highest risk, more medically complicated or socially complicated children.”
Children who use the CCP have health issues such as prematurity, developmental or intellectual disabilities, neurological disorders like cerebral palsy or seizures, genetic disorders, autism, and conditions that require the use of feeding tubes or oxygen—or a combination of the above.
Before a family visits BMC, the CCP helps to book multiple appointments (for instance, setting up appointments with a child’s cardiologist, endocrinologist, gastroenterologist, and neurologist on the same day) to save the family from having to make separate trips to the hospital. This team approach is increasingly popular with patients and their families, says Maypole, adding that the program has seen a boom in those seeking such assistance. In 2008, the CCP served approximately 275 families; last year it was well over 400 families, Maypole says.
In addition to the CCP, the developmental and behavioral pediatrics division offers a wide range of other clinics and programs, such as the Grow Clinic (providing care for children with dietary and growth issues) and Baby Steps, the NICU Follow-Up Clinic (further helping babies born prematurely).
The division also oversees the Autism Program, comprised of a team of multilingual autism specialists and family navigators to advise parents of children on the autism spectrum on local educational and therapeutic services that their child is eligible for. For example, family navigators go with a family to educational team meetings for added support and to ensure that the child is receiving all eligible services. The Autism Program also helps parents with their children’s behavior problems, including teaching intervention strategies for dealing with safety issues, tantrums, and activity transitions. Staff provide guidance to parents on teaching their children independent living skills (like dressing and bathing) and offer tips and links on the program’s regularly updated online resource library and Facebook page.
Families seen by BMC’s developmental and behavioral pediatrics providers typically undergo a three-part consultation when they arrive. The first visit is a parent- or guardian-only meeting to discuss the child’s history and to gather such information as prior test results. The second visit is an assessment of the child. The third visit is an appointment with the family to discuss diagnosis and recommendations.
“As Sofia’s parent, I needed to know a whole lot of information, not just about doctors, but about schooling and how to secure an Individualized Education Program,” says Pignataro, who serves as a parent mentor in the Autism Program’s Parents Leadership in Autism Network. “It took me a long time to navigate it myself, but at BMC Sofia has benefited so much from the services they have to offer. Her pediatrician gives me a lot of positive feedback and that keeps me motivated to keep going in the direction that I’m going.”
Want more information?
Find out more about BMC’s developmental and behavioral pediatric services here or call 617-414-4841 and press “123” to receive faster service.
The video accompanying this article will be included in a new BU-run website called Parents of Children with Disabilities. The site, which requires a BU Kerberos password to log in, steers readers to resources and services and offers parent-to-parent advice for those at the University with disabled children. On the website, BU parents share their stories of raising a child with a disability and provide a list of organizations they’ve found helpful, such as the state’s Department of Developmental Services, special summer camps and financial relief funds.