As the Senate considers a major overhaul to the Affordable Care Act, parents of medically complex children are worried about their future, and what might happen to them if Medicaid is cut. This week, Democratic Senator Tim Kaine heard from several of these parents in a roundtable discussion in Northern Virginia.
He met Isaac Crawley's family. “Isaac loves to ride bikes. He plays Mario Kart. He watches YouTube videos. He loves his stuffed animals and his pretend play, and he is a Cub Scout and a very active member of his church.” His mother, Kim Crawley of Ashburn, is obviously a very proud parent. She is also a worried parent. "Isaac was born with a birth defect called esophageal atresia. He was missing the majority of his esophagus.”
That requires constant care, breathing tubes, equipment and 23 surgeries. This is where the Affordable Care Act comes in. Even though Virginia did not expand Medicaid to hundreds of thousands of people who live in poverty or with disabilities, it does help children like Isaac. But if the bill currently before the Senate is approved, that coverage might be capped at a dollar amount.
"How would you feel if the nurse was not able to come anymore," I asked Issac. In a quiet voice he replied "I would be sad."
Kim and Isaac are only some of the people who would be affected if Republicans push through the overhaul of the Affordable Care Act now being considered in the United States Senate. This week, they brought their stories to U.S. Senator Tim Kaine during a roundtable discussion in Northern Virginia.
“The response to the Senate bill has been, frankly, astounding," Kaine told the group." In 18 days, my office has received 11,104 calls and letters around the Senate Republican health care proposal. Two percent are in favor of it. Ninety-eight percent of those reaching out to us about it are against it.”
But Office of Management and Budget Director Mick Mulvaney says the Affordable Care Act is no longer affordable. “We’re no longer going to measure compassion by the number of programs or the number of people on those programs but by the number of people we help get off of those programs,” he said in a recent news conference.
Senator Kaine disagrees. “The chief budget official in the United States thinks that we should measure compassion by the number of people we push off of Medicaid, and that explains an awful lot about this proposal.”
Mulvaney says cutting Medicaid is necessary to help the economy. “We’re not going to measure compassion by the amount of money that we spend but by the number of people that we help, and that is how you can get three percent economic growth.”
But Senator Kaine says balancing the budget on the backs of these parents is irresponsible. "I mean when somebody says we are going to measure our compassion by the number of people we get off these programs, I think even our budget director has a misconception about Medicaid. It’s important we share stories about what Medicaid really does.”
Stories like Angie. She’s a foster parent in Haymarket who arrived in the neonatal intensive care unit to hear a doctor explain everything that was wrong with the girl who eventually became her daughter. “And all I said to him was, ‘Has anyone ever held her?’ And at two months old nobody had ever held her. And so I know that’s not important, but you think about babies and how important touching and holding is. At that point I looked at my husband, and I said, ‘I don’t care. We’re going to do whatever it takes to make her her best.'"
Now she’s worried, like all the parents who met with Senator Kaine. What will cuts to Medicaid mean for them and their children? How will they be able to afford specialized wheelchairs and breathing tubes and respirators? That’s what they say is at stake in Congress in the coming weeks, a debate they view as life or death.
This report, provided by Virginia Public Radio, was made possible with support from the Virginia Education Association.
