On any given day, dozens of people visit their lawmakers on Capitol Hill to advocate for one cause or another — from energy policy to research projects to the Farm Bill.
They usually have very personal reasons for making the pitch. That was certainly the case for 19-year-old Maddy Cummins, and her parents, Amy and Matthew, when they came to Washington, D.C. for the first time last week.
When she was two years old, Maddy was diagnosed with Rett Syndrome, a neurological disorder. She now gets around in a wheelchair and is non-verbal. She communicates with the help of an iPad-like device she operates with her eyes.
In between meetings, Maddy practiced. As her eyes flicked across the boxes on the screen, the device recited, “Hi, I’m Maddy Cummins and I am representing Children’s Hospital Colorado.”
Around her neck was a nametag, with a green ribbon underneath with the words “I’m fearless” on it.
The family spent two days traversing the Capitol complex to meet with staff from the entire Colorado congressional delegation as part of the Children’s Hospital Association’s Family Advocacy Day. At stop after stop, Maddy highlighted important issues to her: no cuts to Medicaid, support for pediatric mental health, and education and training for pediatric specialists, like the ones at Children’s Hospital Colorado who help her.
Maddy relies on Tricare — her father is retired from the Air Force — and Medicaid for all her medical needs, from her doctor’s visits and medication to her hospital bed at home.
“Without this coverage, it would make my life so much harder than it already is,” she said.
Maddy has been a patient ambassador for the hospital before, going to a Nuggets game (she’s a fan) and some golf tournaments. But never the U.S. Capitol.
Her father, Matthew, said when they were approached to make this trip, the family had to talk it over.
“We asked Maddy first, ‘Are you up for this cause it’s going to be a challenging trip, with all the various medications and therapies and extra equipment we have to bring along with us?’," Matthew said. "She [was] absolutely up for it. She wants to meet the challenge. She’s a tough girl and she wants to show what she can do.”
Maddy spent about a month working on what she’d say.
“I’m very excited to be here,” was one of her answers. “Thank you for listening to me. It’s important to continue funding for patients like me.”
She even threw in some political jokes. (“Where can kids vote? In swing states.” “How much does it cost to vote?” “You have to check the Bill of Rights.”)
Maddy’s mom, Amy, said at first it was intimidating, walking into a senator’s ornate office. But by the end of their time on the Hill, her view had changed. “This experience was amazing. I felt like they really wanted to hear about the daily life of Maddy and of children with medical complex needs in Colorado and where they’re lacking and where they’re succeeding.”
The family of five (Maddy has two younger siblings) chose to move to Colorado after Matthew left the military, in large part because of the health care and specialists Maddy would be able to access in the state.
But they were also realistic about the challenges of getting all that they asked for. The Republican-controlled House is looking to cut spending this budget go-round, so additional funding for pediatric care may be hard to come by.
“We know there are budgetary constraints, especially in today’s world,” said Matthew. “We’re aware of that, but we’re willing to help advocate in any way we can.”
After a grueling eight meetings on their second day, the family was worn out, but happy. Maddy was too tired to keep using her communication device. So instead she communicated with her eyes — looking directly at you for a yes, away for no.
“Maddy would you do this again? Would you want to come and lobby lawmakers again?” I asked. She quickly looked straight at me. For all the challenges, it was an unhesitating “yes.”
After telling Maddy’s story to lawmakers, the family left feeling they would at least try and help her and other kids like her.
Whether they’ll succeed, remains to be seen.
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