6-year-old Timmy Morrison knows where to get the best frozen yogurt and popcorn on Capitol Hill.
He’s had time to do his research. For the past six weeks, he’s been walking the halls of the Capitol and Senate office buildings with his mom, trying to convince his elected officials not to let hundreds of kids like him die.
Timmy is one of around a dozen “Little Lobbyists” — kids with chronic, lifelong medical conditions who, along with their families, visited the offices of all 100 Senators, dropping off notes and asking for meetings. And they, ultimately, helped kill the Senate’s latest push to repeal the Affordable Care Act.
In the days leading up to the vote, hundreds of activists, organizers, and ordinary citizens descended on D.C. for a final push against the bill.
The effort led by groups like ADAPT, a disability rights community that staged a series of sit-ins on Capitol Hill and at lawmakers’ offices, grassroots Indivisible groups as well as traditional liberal political organs, including MoveOn and Our Revolution.
The “Little Lobbyists” were organized by Timmy’s mother Michelle Morrison and friend Elena Hung, first-time activists like so many others, who felt like their children’s voices were missing from the health care debate.
“It really is just a handful of families trying to figure out what we can do,” Morrison says.
Morrison, a linguistics professor at the University of Maryland, explains that she originally barely noticed her health plan’s lifetime million-dollar maximum.
Six days after the Affordable Care Act’s ban on denying coverage of pre-existing conditions on children’s policies kicked in on Sept. 23, 2010, Timmy was born with Opitz G/BBB syndrome, a rare respiratory disorder that requires him to breathe through a tracheostomy and eat through a feeding tube.
By Christmas, the cost of Timmy’s treatment had already surged past $1 million. By the time he was six months old, it had climbed to well over $2 million. The Morrisons still pay thousands of dollars in medical bills annually, but thanks to the ACA, bankruptcy appeared to be off the table.
With the law in jeopardy, that threat once again became real.
“It feels a lot to us like someone is rolling the dice with our children’s lives and not taking the time to figure out what the impacts are,” Morrison explains.
With the right care, which Timmy currently gets at three hospitals in three states, the little lobbyist leads a normal kindergarten life.
In between chatting about robots and pirates, Timmy plays on a local soccer team, which, when treated properly, his condition allows.
Even with Morrison’s employer-sponsored plan, Timmy depends on Medicaid waivers for parts of his care. Several versions of the bill threatened deep cuts to Medicaid.
Hence the constant travel to D.C.
“I don’t think he realizes that it’s unusual for a kindergartner to be running around shaking hands with senators,” Morrison says.
For Timmy, the trips to the Capitol quickly became routine. Occasionally, he rode in a stroller, since too much walking can aggravate his breathing. The parents brought crayons and special snacks for all the kids.
Between meetings, Timmy spent time coloring in the outlines of the states whose senators’ offices he’s visited. Some of the older kids, 11 and 9, eventually started engaging staff members themselves, encouraging the younger ones to join in and speak up, Michelle says.
Meanwhile, for the adults, the joyful moments were tempered by frequent dead ends and creeping frustration.
The bipartisan group knew what it wanted any new bill to preserve: protections for pre-existing conditions, a ban on lifetime limits, and most critically, Medicaid funding.
The ever-shifting language of the proposed health care bill, however, often made it difficult to determine what arguments to present in meetings. “It’s like trying to catch soap,” Morrison says.
The Senate’s recent successful “motion to proceed” vote left the group “heartbroken, terrified, furious.”
“We must now watch as the Senate takes as little time as it possibly can to decide the fate of our children,” Morrison and Hung wrote in a blog post published the day of the vote.
The parents and children pressed on. The group spent the next few days engaged in a final push, thanking GOP Senators Susan Collins and Lisa Murkowski for their no votes and lobbying hard for more.
On the afternoon of the final vote, they finally secured their first in-person meeting with a Republican senator — Jeff Flake of Arizona.
After tucking Timmy in on the night of Thursday, July 28, Morrison drove alone to D.C. to join Hung at what the pair expected would be a vigil.
29 minutes after 1 a.m., it turned into a celebration of relief, when John McCain cast the decisive “no” vote on the bill.
The crowd outside the Capitol burst into cheers and tears of joy.
The surprise victory left Morrison feeling “pretty fabulous. And overwhelmed.”
Their efforts had suffered dozens of setbacks in recent months. The House bill that was killed, then resurrected from the dead. The Senate bill, which was destroyed and reformed so many times. The crushing affirmative “motion to proceed” just two days earlier.
This, after all that, was sweet.
As Morrison and Hung wrote on their blog, dusting off and continuing to fight against the odds is nothing new for families like theirs.
“Our children have taught us well.”