Laura G: Missouri Policies are Failing Medically Complex Children

For nearly a decade, Laura G., a mom in Missouri, has fought to get her daughter the health care she needs. Her daughter Annie, now nine, was born with a rare blood-clotting disorder and suffered a stroke as an infant, resulting in life-long health complications.

At the time, Laura and her husband both worked, but neither of their jobs offered health insurance. Their income was just above Missouri’s Medicaid eligibility threshold. Their only affordable option was a Christian health care sharing ministry, a faith-based alternative to health insurance, but when their daughter needed care, the ministry refused to cover medications and some of the recommended therapies, labeling part of her condition a “developmental disability” instead of a medical issue. The family quickly fell into medical debt.

Desperate and out of options, Laura made a difficult decision: she left her job so her family could qualify for Medicaid. “We decided to become poorer to qualify her for Medicaid so she could get the medical care that she needed.”

When her daughter developed epilepsy at age two, her medications cost thousands of dollars per month, far beyond what the family could afford. But once they qualified for Medicaid, everything changed. Her daughter gained access to treatment, including a life-changing surgery that helped her walk again. With 18 months of intensive therapy, also covered by Medicaid, her daughter went from using a wheelchair for distance and leg braces to running and even doing gymnastics. “Most private insurance companies don’t cover those therapies. We would have had to raise $100,000, or something ridiculous,” Laura said.

One of the only reasons they were able to get Annie all the therapy she needed after surgery was because Medicaid also provided transportation. The therapy center was an hour away each way, and Annie had to go every single day to relearn how to walk. Without Medicaid’s transportation assistance, those trips, and her recovery, would not have been possible.

As the family worked to regain their financial stability, Laura’s husband returned to school to become a nurse. The plan was to keep their daughter covered through the Children’s Health Insurance Program (CHIP), which supports families who earn too much for Medicaid but still cannot afford private insurance.

But when he got a full-time job with the state of Missouri, they learned about a loophole they hadn’t expected: state employees cannot use CHIP. Now, their daughter will lose Medicaid at the end of the year. “Our biggest concern is that we won’t be able to get her medication if she doesn’t have Medicaid anymore,” she said, “With epilepsy, it’s really hard to find meds that work, and once you find things that do, you shouldn’t mess with it.”

Laura believes Missouri’s policies are failing families of medically complex children. She wants state employees to be allowed to buy into CHIP or apply for waivers. “I just wish there was a form where I could say, please help me. We’re doing the best we can. It’s taken us six years to get to where we’re at now, sending my husband back to school and having a better job and things. So, it feels like you’re punished a little bit for doing the right thing, at least our child is punished, because it’s their medical care.”

For her family, Medicaid has been life changing. It allowed her daughter to walk, run and live like any other child. Without it, they face impossible choices: going into debt, losing access to care, or stepping away from work once again.