Coordinating care beyond the clinic

Every surface of Angela Lombardo’s office is wallpapered with holiday cards from the families who bring their children to the clinic at Children’s Hospital Boston’s Down Syndrome Program. As the program’s clinic coordinator, Lombardo is the first line of support for the more than 480 families that the clinic serves regularly.

Though she’s committed to each and every one of those families, Lombardo’s the first to admit that there’s only so much she can do for them in the clinic setting. With the $30,000 award that comes with her 2011 David S. Weiner Award for Leadership and Innovations in Child Health, she has a plan to change that.

“We see so many kids from underserved populations,” says Lombardo. “They come in with unmet needs—medical, educational, social supports, recreational. There’s so much basic stuff that’s lacking.” The primary reason Lombardo cites for most families with unmet needs is a lack of knowledge about how to access the services available to them—or even that those services exist. Though language and cultural barriers are the most common causes for this, Lombardo stresses that the problem crosses all ethnic and racial lines. “Sometimes a family simply can’t grasp that a diagnosis of Down syndrome doesn’t have to be the end of the world,” says Lombardo. “If you don’t expect your child to read because you don’t think a kid with Down syndrome should read, and the schools aren’t helping you, you’re not likely to push for help with reading.”

To rectify that, Lombardo plans to use the Weiner Award to add a Community Health Advocate to the Down Syndrome Program’s team—someone with Lombardo’s expertise in obtaining support services, but who can actually work out in the community. Ideally, the new advocate will be paired with families who don’t know how to access resources well. She’ll go into their schools, help fill out the right forms, and make the necessary phone calls to get their children the services that Children’s recommends.

Lombardo offers the example of a Haitian-American family whose son is seen at the clinic. “Since the school doesn’t offer him anything, he sits at home and watches TV,” she says. It’s a stark contrast to Lombardo’s son, Isaiah, who also has Down syndrome but participates in baseball, basketball, bowling and horseback riding. Since their hometown of Somerville doesn’t offer summer camp, the town pays for Isaiah to go to camp elsewhere. “We live literally five streets apart,” says Lombardo. “The difference is that I know what services my son is entitled to, and I know how to ask for them. There shouldn’t be such a huge difference between our worlds.”

Lombardo hasn’t always been an expert in how to access the best care for children with Down syndrome. “I was a naïve 26-year-old when Isaiah was born,” she laughs. “I assumed I’d be going right back to work after I had my baby.” Four hours after delivery, Isaiah was diagnosed with Down syndrome, as well as Hirschsprung’s disease, a blockage of the large intestine due to improper muscle movement in the bowel. “We basically lived at Children’s for the first three years of his life,” says Lombardo. “Because we spent so much time in Early Intervention, they started asking me to speak to other families as an unofficial expert.” When the clinic coordinator position opened in the Down Syndrome Program, she joined Children’s full-time.

Lombardo’s goal with the new advocate position isn’t just to help families get the services they need, but to educate families—to empower them to seek out the assistance that, in many cases, may simply be theirs for the asking. She’s already started preparing a list of families she believes could benefit immediately from working with an advocate. “Now we just need to find the right person,” she says. “Someone who’s excited to get out there and see what kind of difference they can make. I think that difference is going to be priceless.”

If the position is successful, Lombardo hopes to set a new standard for equal treatment and care that can be modeled by other hospitals across the country and around the world. The program’s speaker series is viewed online by clinicians and parents as far away as South Africa and Australia. Though she knows they can’t change cultural beliefs, they can educate people about what Children’s believes when it comes to children with Down syndrome. “We can educate them about what services they can get, and what we hope to see their children do,” says Lombardo. “Kids with Down syndrome can grow up to get jobs, they can go to college, they can have a future. We can’t write off any kid.”