Boston Children’s raises its voice for kids everywhere

A team from Boston Children’s Hospital recently returned from Family Advocacy Day, a national event sponsored by the Children’s Hospital Association that gives children’s hospital patients from around the country and their families a chance to meet with leaders on Capitol Hill and share their stories about the importance of pediatric hospitals. Here, Joshua Greenberg, Boston Children’s s vice president of Government Relations, shares why Family Advocacy Day is so important and explains how this year’s meeting was helped by three special kids.

Joshua Greenberg and Amy DeLong of Boston Children's Government Relations team make a promise for all pediatric patients.

Taking three families from three different New England states to Washington D.C. to speak with their elected officials about health policies is a lot of work. There is a ton of travel logistics to be sorted out and some pretty complicated schedules to accommodate. Once there, D.C. takes a little getting used to. The city moves at a fast pace and has its own special language that can be confusing to the uninitiated. Factor in the heat and humidity of a southern city in mid-July and you can be left with a cranky Government Relations staffer (me!) and a tired group of children and families. It’s far from a vacation, but Boston Children’s Government Relations team would never miss a Family Advocacy Day event. All the work it takes to organize is instantly justified when we see in person the reach our advocacy efforts can have in Washington. Every year our team returns to work refreshed, engaged and energized. I think the families that participate feel the same way.

Children are often left out of the “formal” political process. They don’t vote, and younger children can only rely on adults to speak up for their needs. For that reason it’s the mission of Boston Children’s (and children’s hospitals in general) to advocate for their health needs. Boston Children’s Government Relations team devotes a great deal of time and effort to a broad range of issues, from preserving insurance coverage to improving mental health access and reducing childhood obesity rates. I like to think we are good at what we do, but without question the best child advocates are children and their parents.

2012 Family Advocacy Day patient volunteers

At Boston Children’s, we make very conscious efforts to connect and represent our families. As the only freestanding children’s hospital in Massachusetts, and one of only two in all of New England, we think carefully about the regional role we play when advocating for children. When in D.C. we work with the Children’s Hospital Association to reach as many elected official’s offices as possible about issues of concern to children. We collaborate with other child advocacy groups, especially through our support for and participation in the New England Alliance for Children’s Health, because we know our voices are more likely to be heard when we all work together.

The current slate of issues facing America’s children is daunting. The Medicaid program, funded and regulated in large part by the federal government, is the single largest payor of medical care for children in the United States. Yet many states have sought to cut back on Medicaid coverage, or to limit children’s access to necessary services, through serious budget challenges. The Supreme Court’s recent decision on the federal health reform law further muddies the waters by giving states more discretion to “opt out” of federal requirements they don’t like.

Kyler

Simultaneously, everyone in health care is expecting another round of budget cuts that may impact a whole range of programs important to child health, like providing funding for training of pediatricians and pediatric subspecialists. In many areas there is a serious lack of specially trained medical professionals who best understand the unique needs of children. Subspecialty shortages are already causing serious access problems, and without proper funding things will only get worse.

Every year the families who accompany us to Washington share their compelling stories with our elected officials, providing a human face to the pediatric health issues of the day. This year Kyler, Nicholas and Leanna joined us, and each was eloquent and engaging.

Kyler, who is only 8 years old, spoke beautifully about how important the hospital is to him and went into detail about his need to see a range of clinicians to treat his cerebral palsy. Nicholas may grow up to be a lobbyist some day—he made sure that everyone in the meeting was introduced to each other before we got started—and his sisters pitched in by talking about their own experiences with his care and their relationship with the hospital. Leanna emphasized the importance of a comprehensive, pediatric focused academic medical center to diagnose and treat her rare, life threatening adrenal tumor.

Nicholas

Over the course of two days, we visited with 11 different offices and met personally with senators and representatives from Massachusetts, New Hampshire and Vermont. In many cases, the meetings lasted much longer than planned because the elected officials kept asking questions. Having that level of engagement with busy lawmakers is a rare thing; I couldn’t imagine a better response than the ones our families elicited.

Leanna

Personally, 2012 marked my eighth year as a Family Advocacy Day participant. Each year brings together a great set of families and new opportunities and challenges. Considering all the health care issues currently in play in Washington, I can’t think of a more important time to make our voices heard than right now. I’m glad that Kyler, Nicholas and Leanna were there to help, because when it comes to advocating for the needs of children, theirs are the most powerful voices of all.

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