Family Advocacy Day: Connecting patients, parents and policymakers

2016 Speak Now for Kids Family Advocacy Day, June 22, 2016
2016 Speak Now for Kids Family Advocacy Day, June 22, 2016

Each summer, the Office of Government Relations travels with patient families to Washington, DC to participate in the Children’s Hospital Association’s Family Advocacy Day. This event is a “big lift” in terms of the work involved in identifying families, arranging travel and meetings and managing a crowd of people, many with special needs, in a city that is 500 miles from home – and usually really hot and muggy in June!

The event offers an important opportunity for us to bring our patients directly to members of Congress, who are making decisions about how children receive care and the institutions that deliver that care. It’s important that Members of Congress hear about public policy from the people who are impacted.  It’s important that members of Congress hear about public policy from the people who are impacted.While we can travel to DC ourselves as BCH staff and with our senior leadership to make our case for better public policies for kids (and we do!), there is nothing like taking the patients and their families into a congressional office to make that case for us. In particular, we make a point to regularly travel with families from other states in the New England region to help remind elected officials from the other states that our hospital in Boston plays a significant role in the health care of some of the most vulnerable children in their home state. They need to hear this from their own constituents and our patient families have done a tremendous job of illustrating that role over the years.

The value of the event is evident not just in June, but throughout the year. When we go back to these Members and their staff at other times throughout the year, they remember the families who have come with us. Sometimes we see the Family Advocacy trading cards on the desks of members of Congress. Sometimes they ask us for updates on the health of the kids. And we like to believe that always, these kids stay in their hearts and minds when it is time to take an action that impacts children and those who provide them with care.

FAD2016_7Reflections on Family Advocacy Day 2016

This year, we traveled to Washington DC with three patient families, representing the states of Massachusetts, New Hampshire and Maine; our President & CEO, Sandi Fenwick; several members of the Government Relations staff; and my own nephew, who resides in Rhode Island and is a BCH patient. In one day, we held 16 meetings on issues of importance to Boston Children’s Hospital and our patients. This is a lot of meetings!

I am so proud of each one of our patient families. The two primary issues we spoke about were the ACE Kids Act, which would allow children’s hospitals to better coordinate the care of medically complex patients in the Medicaid program and the Children’s Hospital Graduate Medical Education (CHGME) program, which allows us federal support to fulfill our mission as a teaching hospital. Each of the three families came with a story that underscored the importance of these issues. In the case of Emma, care coordination among her 10+ specialists is crucial to her health and well-being. Hunter, who lives in Maine, illustrates the need for better systems to ease the burdens faced by families who must travel out of state to find appropriate care for their child. For Arielle, access to a hospital with the level of sub-specialization and surgical expertise found at Boston was literally and quite simply, lifesaving.

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Patient Madison VanBrocklin enjoys some sightseeing

Spending time with these three families over the course of our two days in Washington was awesome. With a total of 7 children under the age of 10 and one service dog, weighing in at 137 lbs, we were an auspicious group. The kids and their families rose to every challenge we encountered, which included very warm temperatures, the side swiping of our tour bus by another tour bus, construction on the Metro and all around Capitol Hill and a lot of sudden meeting changes on the House side, due to a sit in staged by the House Democrats as they demanded a vote on gun violence. Of course, having watched Hunter and his service dog, Wendy navigate the steps to the Lincoln Memorial just one day before, I was not surprised at all to see people rising to these relatively minor challenges.

I also accompanied my 17 year old nephew to meetings with the Rhode Island delegation, where he told his own story of the discovery and treatment of thyroid cancer, the follow up it entails and his gratitude that he is able to receive specialized care in Boston from a provider who communicates with his pediatrician in Rhode Island. This is what we want for all our kids: the right care, from the right providers at the right time. This is what we aim to achieve through our advocacy for ACE Kids and our commitment to furthering the teaching and training of the next generation of pediatric providers.

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In between tours of the city and a party that evening, the children prepared for their meetings on Capitol Hill by learning how a bill becomes a law.

Every year, I come away from Family Advocacy Day with renewed energy about my work and inspiration. This year, my biggest takeaway is the commitment I saw in the parents, not only to their own children but to all children. The families who took the time out of their own busy schedules and lives to travel with their young children to Washington, DC were doing so because they wanted to be a voice for all the parents who can’t do that right now. They can’t do it because they are inpatient, or they are still coming to terms with a diagnosis or they simply haven’t the opportunity. I’m always glad to be among people who are willing to stand up for kids and when it comes to doing just that, there’s no one better than our patients and their parents.

UPDATE: Two weeks after Family Advocacy Day, on Thursday, July 7, the House Committee on Energy & Commerce subcommittee on Health held a hearing to discuss ACE Kids and the topic of how to better serve medically complex children in the Medicaid program. Jay Berry, MD, of Boston Children’s Hospital’s Complex Care Service was one of six invited witnesses, who testified in person before the subcommittee. The children’s hospital community is excited about the prospects of moving legislation forward to address the way providers care for this vulnerable population and grateful to the many families who have worked with us to advocate for ACE Kids over the past 5 years.

Learn more about Government Relations at Boston Children’s Hospital.