Medicaid is a blessing and a curse

The Wall Street Journal recently reported that more Americans than ever are reliant on government aid. My family lives in North Carolina, where nearly 1 in 4 residents receive Medicaid. In 2022, North Carolina spent $18.6 billion on the program, of which approximately 75 percent was reimbursed by the federal government. Enrollments only continue to grow.

As a lifelong conservative, I’ll admit that I’ve harbored suspicion for families that rely on government assistance to make ends meet. But three years ago, my family’s needs changed forever.

In July 2021, my third child was born with a devastating set of congenital abnormalities. David is blind and deaf with an unrepaired rare palatal cleft, multiple brain abnormalities, pituitary issues, cerebral palsy, and more. On the first day of his life, a neurologist visited our NICU room and told us that David would die shortly thereafter and was expected to suffer from intractable seizures due to his rare brain malformations. He was placed with a palliative care team. Miraculously still alive and seizure-free, we brought David home from the hospital several weeks after his birth. To the surprise of his physicians, David turned 3 this past summer. For him, even breathing remains a challenge. But with an honored place in our family, church, and wider community, David’s presence reminds us that God uses the weak and the poor to show the might of His kingdom.

Caring for David is a challenge that takes a village. In three years, my husband and I haven’t spent a night away from him, as he requires round-the-clock care. David’s first week of life maxed out my family’s healthcare savings plan, emptied our liquid savings, and led to us reaching our healthcare deductible. In North Carolina, families over the Medicaid income limit can access life-changing medical care, including therapies, medical supplies, and more at reduced or no cost for their profoundly disabled children through a specialized program. Enrollment in this program waives a family’s income limit if the child meets certain qualifications and awards the child Medicaid.

Because David is medically fragile, he qualifies for the North Carolina Community Alternative Programs for Children (CAP/C) Medicaid waiver. Getting approved for Medicaid under this provision took a full year and several thousand dollars in attorneys’ fees after an initial denial.

Receiving the CAP/C waiver means the state recognizes that David’s profound disabilities qualify him for an institutional level of care. His medical needs are so severe and complex that he would qualify for life relegated to a healthcare institution like a pediatric nursing home. The cost of caring for disabled people at home can be cost prohibitive, and lack of adequate housing for disabled people often strands folks in hospital beds.

With the help of CAP/C, our family can care for David in our home, where he belongs, and with a family who loves him. There are even provisions in CAP/C for specialized, medically supervised child care. In the absence of available home health aides or nurses, I can provide that same care for David and receive pay from Medicaid. Caring for David is truly feasible for our family because of this government program.

Yet the Medicaid system is deeply flawed. Private companies now manage many Medicaid cases in North Carolina. LMEs and MCOs (local management entities and managed care organizations) are third-party companies that are contracted to administer Medicaid caseloads, one per county. These organizations lack adequate accountability structures and fail to be transparent with taxpayers and Medicaid recipients, as multiple lawsuits demonstrate. Taxpayer money pads executives’ pockets.

Government contractors provide durable medical equipment (DME) for Medicaid recipients and can upcharge supplies by hundreds or even thousands of dollars. DME suppliers are no strangers to claims of fraud here in North Carolina. My son’s physical therapist recounted to me the cost of a headrest for a child’s wheelchair. If an individual were to purchase the item directly from the manufacturer, it would cost $200. But through the private medical supply company contracted with Medicaid my therapist used, the same headrest costs taxpayers $600.

The home health supply company that contracts with Medicaid to provide David’s medical supplies routinely skips our orders and ignores our phone calls. Once, we ran out of specialized food for David over the weekend, and a substitute meal donated by a friend landed David in the hospital with a rare allergic reaction. Getting replacement equipment for his feedings is notoriously challenging, and faxes from my son’s pediatric surgeon requesting extra supplies are somehow never received.

Needy families are typically not engaging in Medicaid fraud—but providers, government contractors, and bureaucrats are. Pressures on Medicaid will only increase in the coming decades. A comprehensive audit that targets internal fraud and price gouging by government contractors and streamlines the bureaucratic behemoth is necessary. Medicaid can be a miracle for those in need. There are faces to the families on government assistance, and one of those faces is mine.