Despite years of sleepless nights, emergency room trips and long stares into the financial abyss, Kate Robinson-Howell and Bob Howell of Austin are adamant that they are a Medicaid success story.
Their second child, Apollo, was born with a malformed esophagus and trachea. He had emergency surgery to reconstruct his airway when he was just four months old. Now two years old, Apollo eats through a gastronomy tube that protrudes from his stomach, suffers from chronic lung disease and has endured dozens of emergency room visits and countless hours of speech, physical and feeding therapy.
“We’re just on edge constantly,” Robinson-Howell said. “If people don’t see it, it’s hard to appreciate how incredibly intensive and relentlessly demanding it is to raise a child with a chronic illness.”
To the average visitor, Apollo might look like any other toddler. He likes trains because his four-year-old brother Oliver likes trains. His voice is raspy, but he thanks visitors and calls them “sir."
Robinson-Howell, who has worked in the health care policy field in the past, said the only reason the family finances have not been “ridiculously torpedoed” is that they qualify for Medicaid through a Texas program that covers kids with chronic conditions.
Medicaid helps families like the Howells afford their children’s health care. But the program, which was expanded under the Affordable Care Act, better known as Obamacare, could see major cuts if the U.S. Senate adopts the cost-saving provisions of the House-passed American Health Care Act. According to an analysis by the Congressional Budget Office, the House proposal would reduce future Medicaid spending by $834 billion over 10 years.
Supporters of the Medicaid reforms in the legislation say they will control runaway spending. Detractors say the plan uses Medicaid cuts — the bulk of which would go into effect in 2020 — to finance the repeal of Obamacare taxes that mostly fall on the wealthy.
“The budget being balanced on the back of disabled children is asinine and atrocious, and we should all be mortified that it’s even being talked about,” Robinson-Howell said.
Chris Jacobs, the founder and CEO of Juniper Research Group and a conservative health care policy expert, said Texas children with disabilities like Apollo would likely see little to no reduction in Medicaid help under the House proposal.
Jacobs pointed to a June report from the nonpartisan Centers for Medicare and Medicaid services that said more than 70 percent of Medicaid cuts will come in the form of a repeal of the Obamacare Medicaid expansion. Because Texas has not voted to expand the program, Medicaid cuts may not be as dramatic as in other states, he said.
U.S. Rep. Roger Williams, Robinson-Howell’s congressman, voted for the American Health Care Act, writing in a May 4 statement that it will “begin to undo the damage caused by Obamacare.” His office did not respond to requests for comment for this story.
Texas, which has one of the nation’s highest rates of uninsured children — 11 percent, according to a June study by the nonpartisan Georgetown University Center for Children and Families — is especially vulnerable to Medicaid cuts of any type. Almost half of all Texas children with insurance get it through Medicaid.
The study also noted that rural children in Texas have disproportionately benefited from health care reforms brought about by Obamacare. In 2009, the year before the landmark reform bill was signed into law, 18 percent of rural Texas children were uninsured. By 2015, that number had fallen to 11 percent.
Ronnequa Tennon of Elgin said Medicaid is keeping her daughter alive. Now 3 years old, her daughter was born prematurely. She weighed just one pound, one ounce at birth, and immediately required a ventilator to breathe. She still requires round-the-clock medical care and will likely be on life support for the rest of her life. Tennon, who is between jobs, said she could not afford her daughter’s expensive medications without Medicaid.
“I would be out of her life, and probably working up to 10 jobs just to keep her living,” Tennon said.
U.S. Reps. Michael McCaul and Bill Flores, Republicans who each represent parts of Elgin, both voted for the House health care plan.
After the May vote, McCaul said in a statement, “My vote for the AHCA is the first step towards building a stronger foundation for our nation’s healthcare system.”
Flores’s post-AHCA statement said: “The bill ... enacts the largest entitlement reform in decades by modernizing and strengthening Medicaid.”
It's unclear precisely how potential cuts would affect Texas children and families on Medicaid. But Stacy Wilson, president of the Children's Hospital Association of Texas, says AHCA specifications ensure that there will be less Medicaid money to go around — particularly in the Lone Star State.
If the House proposal becomes law, Medicaid cuts would come in the form of a fundamental change in the payment structure of the program. Today, the federal government matches state Medicaid spending dollars. The House plan would mandate that a state’s allotment of federal Medicaid funds would be calculated on a per capita basis based on 2016 spending, capped and then adjusted for inflation yearly.
A May study published by the nonpartisan Brookings Institution looked at how a per capita cap would have affected Medicaid funding in the 2000s. It concluded that “no state would have received more funding under a per capita cap than under current law in any year.”
Jacobs said Texans would be fine under the House plan’s per capita cap.
"I think the impact would be limited to minimal if the per capita caps went into effect," he said, adding the reform would "control costs by giving states more flexibility."
According to a June University of Texas/Texas Tribune poll, just 20 percent of Texans who have been following the health care debate have either a “very favorable” or “somewhat favorable” view of the American Health Care Act, compared with 51 percent who say they have a “somewhat unfavorable” or “very unfavorable” view.
It is unknown how the Senate version of the legislation will handle Medicaid. The legislation, which U.S. Sen. John Cornyn, R-Texas, said he wants to see voted on before the August recess, will be unveiled Thursday, according to the Washington Post. There have been no hearings on the legislation, which Republicans have drafted out of the view of the public.
But in a Tuesday speech on the floor of the Senate, Cornyn said he wanted to make Medicaid “sustainable into the future.” He cited the Medicaid changes in the House plan as a way to keep program spending increasing “at a sustainable rate.”
Robinson-Howell said she has begged her representatives not to cut health insurance programs. In a Feb. 7 letter to Cornyn, she wrote, “Any cuts to ACA will put my two-year old son's life at risk.”
She said Cornyn responded with a letter in June reassuring her that he would work to end wasteful foreign assistance spending.
A spokeswoman for Cornyn said Robinson-Howell "should have received a healthcare-related reply from Sen. Cornyn in March."
Disclosure: The Childrens Hospital Association of Texas and the University of Texas have been financial supporters of The Texas Tribune. A complete list of Tribune donors and sponsors is available here.