Samantha Bailey spends her days in a Phoenix hospital room with her 19-month-old son, Henry, waiting for a heart transplant and fretting about his health care once he gets it.
Fears about health care for low income or special needs children in Arizona aren't theoretical or simply the product of an anxious mother's mind. Until last year, Arizona was the only state in the nation that wasn't enrolling children just above the poverty line into the free or low-cost Children's Health Insurance Program (CHIP). A recession-induced budget crunch there led to a health coverage wait list for families earning between $27,000 to $40,000 a year for a family of three.
Now, parents across the country who have special needs children or low incomes are bracing for similar threats to their families' health care.
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The nearly $1 trillion in federal cuts to the Medicaid program approved by House Republicans threaten the record success getting these children covered by insurance and on a path to healthier lives, health experts warn. Their angst is magnified by the Sept. 30 deadline for CHIP reauthorization, which some worry will be used as a bargaining tool to get the House-passed American Health Care Act (AHCA) through the Senate.
With cuts anywhere near that size, "there's absolutely no way kids can stay out of harm's way," says Joan Alker, executive director of the Georgetown University Center on Children and Families.
Medicaid and CHIP together cover nearly half of all children six and under, with Medicaid covering the vast majority.
Children's health advocates fear their cause has been overshadowed in the uproar over whether or not people with pre-existing conditions would be covered under House Republicans' plan to repeal and replace the Affordable Care Act (ACA).
Medicaid covers health care for the disabled and nearly all people under 138% of the federal poverty limit in the 32 states (including D.C.) that expanded Medicaid under the ACA. In states that didn't expand Medicaid, pregnant women and new mothers are covered for varying amounts of time.
Along with leaving it up to states how much of the ACA should be overturned, the AHCA would cut $880 billion from Medicaid over a 10-year period. It would largely do so by turning the program into a block grant to states that would remain constant through recessions, like the one that forced Arizona's version of CHIP to stop accepting new members.
Henry Bailey is enrolled in a state Medicaid program that provides coverage for children with certain qualifying, often high-cost medical conditions. It's unknown what changes Arizona would make to the state's Medicaid program if the federal funding formula shifted.
Samantha Bailey worries what that will mean for Henry, who will need regular checkups and a lifetime of anti-rejection medications after his heart transplant.
"Our immediate concerns are whether the state will still cover him," said Bailey, a registered Republican. "After transplant, the medications that he requires are lifelong. If he skips a dose or we are unable to afford it, he goes back into rejection."
Arizona's law that reopened CHIP to new children last year, also directs the state's Medicaid director to halt new enrollment and provide a 30-day termination notice to enrollees and contractors if the federal government halts funding.
"We are asking Congress to focus on this and make sure that kids don't get lost in the shuffle of all the fighting that is going on." said Dana Wolfe Naimark, CEO of Children's Action Alliance in Phoenix. "We are extremely concerned on the impact on kids. Everything is at risk."
To many, health coverage for children seems like a bipartisan no-brainer. Research increasingly shows the economic benefit of investing in children's health early. The government recoups much of its investment in Medicaid for children over time in the form of higher future tax payments, a 2015 study published by the non partisan National Bureau of Economic Research found.
Children who had been on Medicaid also collect less in the Earned Income Tax Credit and the women who were on Medicaid earn more money by the time they are 28. Children who were eligible for Medicaid also live longer and are more likely to go to college, the report found.
"From a cost-benefit perspective, investments in children have enormous payoffs," says John Graham, who was rule-making chief at the Office of Management and Budget in the George W. Bush administration. "But children don't vote and are not politically organized, so it's not as easy to defend their interests in the political process as it is for senior citizens."
Any talk about reducing spending on Medicaid will unquestionably affect low income kids just as they need help the most, says psychologist Rahil Briggs, director of pediatric behavioral health services at Montefiore Medical Group in the Bronx.
Briggs says children who live in poverty are far more likely to have a parent who is mentally ill or incarcerated or be subject to the eight other "adverse childhood experiences" (ACEs) that harm their long term health and brain development. The more of these experiences occur, the more likely a child will suffer from mental illness and substance abuse later in life, according to the Substance Abuse and Mental Health Services Administration.
Montefiore Medical Group has screened more than 3,800 parents of young children for ACEs in the last 12 months and found 10 parents who had faced all 10 of the experiences, which also include sexual abuse and substance abuse in the home. Several hundred experienced between four and nine of them as children.
One new mother who grew up with all 10 ACEs had such a negative childhood that she thought her infant was making obscene gestures when the baby started making hand motions, Briggs says. After getting covered counseling with her baby for years, the mother wrote a letter thanking Montefiore for helping her bring her daughter up in a healthy environment. Now in kindergarten, the baby started reading at age three.
"Fifty percent of mental health issues emerge before adulthood," says Briggs. "To get it right in the early years is critically important."
While if pays off to address social issues related to a child's health early, Briggs says one of the challenges is that the savings are to other "pots of money," starting with education, then juvenile justice and social services. It is often decades before the federal health care system saves money.
"It still feels like we weren't quite doing enough for children at risk, (but) we were just getting traction," says Briggs. "Knowing how successful it could be, the idea of contemplating less than what we've had to work with is devastating."
The House bill now faces a difficult road through the Senate, where Democrats and some leading Republicans are opposed to any cuts to Medicaid.
Republican health care economist John Goodman helped draft an ACA replacement bill sponsored by Sen. Bill Cassidy, R-La., that doesn't reduce the amount of money spent on Medicaid.
When it comes to the AHCA, which Goodman opposes, he says, "Yes, you're going to lose coverage" when it comes to children and other Medicaid recipients. Worse yet, he notes, it's to fund a massive tax cut.
"Special interests agreed to be taxed and weren't even asking for the money back, but this bill does it anyway," says Goodman.
By the time Jaycee and Christian Garcia of Maryland got their son CJ on Medicaid in late 2015, he'd already had about 15 surgeries to treat his rare genetic disorder Eagle Barrett Syndrome and severe scoliosis. Despite Christian's good-paying job as a restaurant manager, the family would host fundraisers, sold their wedding rings and moved in with Christian's family to pay off their medical debt.
Now, as the family prepares for CJ's 31st surgery in July, Garcia is distracted by the debate in Congress and worries what it will mean for her family.
"I am tired of explaining why we need help or why we can't hold another fundraiser or why I am ashamed to do so in the first place," Garcia posted on Facebook recently. "Sympathy and empathy should not have to be solicited. Nor should a right to live."
In Phoenix, Henry Bailey's father agrees.
"What price do you put on a human being?" asks Elias Bailey.