Child Health

Saving Amazing Young Grace and Her Medicaid

“At a 20-week ultrasound, we learned that our baby would be born with spina bifida and face a lifetime of enormous health challenges.” At the time, Chris Glaros was a public servant in the Ohio Treasurer’s office. In his recent Facebook post he continued, “After hearing this news, the first thing I could think to do when we got home was read my Bible. I randomly opened up the scriptures to see what would speak to me. And it was John 14:27: ‘Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.’ God’s amazing comfort in that moment was made all the more real through [the] blessing of good health insurance for our family – indeed, the generous health care provided by the taxpayers of Ohio, given my job at that time. I knew that this baby would bankrupt our family if we weren’t so fortunate.”

Grace and Chris Glaros

Glaros wrote that he and his wife chose to have this precious child they named Grace and “trusted our society – our government, Republicans and Democrats both – to ensure a safety net for her life after our choice was made. Grace would not be alive today without this safety net; without protections against a lifetime limit on her insurance coverage; without protections from denying coverage because of her countless preexisting conditions; without Medicaid.” Millions of children and adults rely on the Medicaid safety net just as the Glaros family has. His post shortly after the House of Representatives passed the un-American Health Care Act (AHCA) spoke for so many when he added: “I am heartbroken that Donald Trump and House Republicans could so callously and cruelly deny millions of Americans the health care they require to live the lives God intended.”

The House’s un-American and unjust act to repeal the Affordable Care Act (ACA) would strip away affordable health insurance for tens of millions of the newly insured including those with pre-existing conditions. Today, thanks in large part to Medicaid, the Children’s Health Insurance Program (CHIP) and the ACA, 95 percent of all children in America have health coverage. The House bill directly threatens all that hard earned progress.

Do the Republican-led Congress and White House really want to be the first Congress and administration in history to take health coverage away from the most vulnerable amongst us, disabled, young and old? How can they defend destroying the Medicaid health safety net 37 million poor and disabled children need to live, learn and thrive and permit insurance companies to discriminate against children and adults with pre-existing conditions? There are 11 million parents and other adults getting Medicaid and needed treatments for the first time under the ACA. Medicaid covers more than 60 percent of all nursing home residents and 40 percent of costs for long-term care services and supports. This cruel and unwise assault on our children, parents and grandparents is made more shameful by the fact that the House-passed bill cuts Medicaid largely to give more tax breaks to the wealthiest. This is sinful, shameful and unjust.

The health of our nation (and our soul) is now in the Senate’s hands. Some Senators may be tempted to try to fix some elements of the House bill, like the assault on people with pre-existing conditions and the enormous cost increases for older Americans. But make no mistake: this cruel, unjust and un-American Health Care Act is irreparably flawed. It deserves a swift and decisive death in the Senate if we are to keep a semblance of America’s sense of fairness alive. Any bill that ends Medicaid as we know it and the Medicaid expansion (regardless of when it would end), and increases the number of uninsured children and adults needs to die quickly.

Medicaid is lean and efficient, serving millions of low-income children, pregnant women, children and adults with disabilities, and seniors. Nearly half of Medicaid enrollees are children. Medicaid covers almost half of all births in the United States. More than half of Black and Hispanic children are enrolled in Medicaid or CHIP, which like Medicaid is also an essential part of the health insurance system for children.

Medicaid is a lifeline for children with disabilities and their families, serving 40 percent of all children with special health care needs like Grace. For families struggling to provide the time and financial resources needed to care for children with disabilities, Medicaid is often the only viable source of health care financing, which can be very expensive. Medicaid also can supplement private coverage to allow children access to specialized medical equipment including hearing aids and wheelchairs.

Medicaid’s Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) benefit guarantees the full range of comprehensive primary and preventive coverage children need and ensures them access to all medically necessary health and mental health services. Medicaid guarantees health coverage to all eligible applicants without waiting lists or enrollment caps. States are reimbursed at least dollar for dollar for expenses to deliver needed services. Without Medicaid’s strong protections, coverage guarantee, and comprehensive, age-appropriate health and mental health coverage, millions of children would be uninsured or underinsured, jeopardizing their lives, academic performance and futures and increasing short and long term costs for states and local communities.

But the immoral, unjust and un-American Health Care Act cuts more than 800 billion Medicaid dollars, imposes a per capita cap on the whole Medicaid program, and gives states the option to shift low income children and adults — but not seniors and people with disabilities — to a new Medicaid block grant. Both would threaten coverage, pediatric benefits, and affordability for millions of children. Both the per capita cap and the block grant would dramatically alter Medicaid’s current structure and core protections for all enrollees. Under the guise of “reform,” per capita caps and block grants designed to save the federal government money do so at the expense of vulnerable populations by shifting costs to states, beneficiaries and health care providers.

Imposing a per capita cap on Medicaid or converting it to a block grant for some will end Medicaid as we know it. States would have to substantially increase their own spending, make deep cuts, or both. Any “savings” would likely come from reducing eligibility, limiting benefits, increasing cost sharing, creating administrative barriers to make enrollment harder for eligible children, or cutting already below-market provider payment rates. These cuts would increase the number of uninsured and underinsured children and adults.

Our nation’s leaders must keep Medicaid strong and reject any structural changes and cuts that undermine its critical protections, hard-earned coverage and resulting lifesaving health gains for children made over the past 50 years. Millions like Grace’s parents are making their disgust and fear about the House health bill loud and clear and so must we all. The Senate must protect Grace and millions of children and people of all ages who depend on Medicaid. Chris Glaros said he loved to sing “Amazing Grace” to his daughter Grace at bedtime; “Tonight, I prayed for our elected officials while singing:

Amazing grace! How sweet the sound
That saved a wretch like me!
I once was lost, but now am found;
Was blind, but now can see.”

Let’s all hope and pray that Grace and millions of children will not suffer a cruel and life threatening injustice at the hands of uncaring leaders blind to their needs.

Marian Wright Edelman is President of the Children’s Defense Fund whose Leave No Child Behind® mission is to ensure every child a Healthy Start, a Head Start, a Fair Start, a Safe Start and a Moral Start in life and successful passage to adulthood with the help of caring families and communities. For more information go to

Mrs. Edelman’s Child Watch Column also appears each week on The Huffington Post.