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."