Parents of Medically Fragile Children Take Stand Against Medicaid Cuts

The Better Care Reconciliation Act, the health bill now being considered by the United States Senate, contains substantial cuts to health care for children, parents, people with disabilities, the elderly and other adults served by the federal/state Medicaid program. The nonpartisan Congressional Budget Office estimates that cuts to Medicaid in the bill will reach 35 percent over time. This cut is a key part of the bill despite the stated goal of the President and Congress of “improving” the Affordable Care Act through the legislation. Some politicians have attempted to claim that cutting federal Medicaid funding for states by over 1/3rd can be done without hurting specific groups such as children with disabilities or the elderly. But as my colleague Andy Schneider explained, Congress can’t take billions and billions of dollars out of Medicaid and expect to protect anyone who gets coverage – the cuts are just too huge. The Congressional Budget Office agrees in its analysis that with these cuts states will consider eliminating services and restricting eligibility for everyone on Medicaid. Whether it’s a child, a parent, an elderly or disabled adult, no one getting Medicaid would be unaffected.

Proposals for such huge Medicaid cuts are sobering, but there has been an unanticipated result of the threat to Medicaid: A leap in understanding among the public and policymakers about how the Medicaid program works. While there are many compelling stories about adults whose lives are changed through Medicaid – like Frances Isbell, who is finishing up law school and hopes to become a disability rights lawyer – there also has been extensive coverage of the role Medicaid plays for medically fragile children in families of all incomes and from all walks of life. Why? Because caring for a medically fragile child at home is a financial undertaking like no other, completely overwhelming even parents with good jobs, private health insurance and plenty of extra time.

The many parents in recent months who have been willing to come forward and share their stories have had a profound effect on the health bill debate because of the critical role Medicaid plays in helping their children. Just as important is the respect for the dedication and devotion these parents of medically fragile children share with us through their stories. Here are just a few examples from around the country:

Pastor James Brigman from Rockingham, NC is currently walking 300 miles to Washington to speak for children like his 9-year-old daughter, Lauren, a medically fragile child needing lifetime care. He explains his walk: “…I knew God wanted me to speak for all these children and their families who face serious trouble if Medicaid is cut.”

New York’s Hillary Savoie and her daughter Esme who, after they met their Congressman to explain their story, had this to say to him about his support of Medicaid cuts: “Don’t pray for us, or others like us, Congressman. Instead, find the courage to vote for us.”

Or Timmy Morrison and his mother Michelle along with Xiomara and her mother Elena Hung who brought their own and other parents’ stories to Capitol Hill in a valiant effort to let members of Congress know who their Medicaid cuts would hurt.

North Carolina’s Natalie Weaver has been tireless in her advocacy for her daughter Sophia who requires 24-hour care at home funded by both their private insurance through her husband’s “great job” and Medicaid. Of her daughter Natalie says, “Because of her strength, she has taught me to fight. Because of who she is, she has made me a better human being.”

In Virginia Marta Conner shares her daughter’s story. Caroline needs frequent hospitalizations, equipment and nursing care to continue to grow and thrive. Ms. Conner writes, “Our family story is not unique. Babies are born every day to parents who never expected to need Medicaid to help them meet their children’s needs.”

Then there’s Jenny Hobbs, whose three children, Madison, Meredith and Michael all have mitochondrial disease and require constant nursing care paid for by Medicaid. Nursing hours were already on the cutting block last year at the state level and Ms. Hobbs has no doubt that cuts of billions of dollars in federal Medicaid funding for states would hurt her family, saying that nursing hours could be one of the first services cut if federal Medicaid funding is cut.

In California James McLelland plays while his mother Jenny McLelland explains how even with great private insurance Medicaid played a crucial role for James: “Only Medicaid pays for actual round-the-clock home nursing for disabled kids.

Eric Hart summed up the life of parents of medically fragile children perhaps the most succinctly: “Our son’s care is part of a complex web of private insurance, Medicaid, charity, and personal contributions. Most of our time and energy go into his care, and we rely on all of this to keep us going. Any reduction in Medicaid funding can jeopardize that.”

One of my wife’s favorite sayings is “parenting is hard,” a sentiment with which even parents of the most obedient and hardest working children can no doubt agree. However I stand embarrassed to even consider those three words when I read about or speak with the parents of medically fragile children. The courage and strength of character of the parents whose stories I’ve summarized should call all of us to work harder to improve the lives of every child regardless of who they are or where they live. America is a prosperous and strong country where, as Pastor Brigman says, “That’s what made our country great – taking care of each other.”

Cutting federal funding for Medicaid by billions of dollars does not meet the example, the devotion, the challenge, the hard work, and the love that parents of medically fragile kids show us every day. Whether public or politician we would improve our own lives by listening.