I’m a Proud Conservative. My Disabled Son Needs Medicaid to Live.

Opinion|I’m Conservative. My Disabled Son Needs Medicaid to Survive.

I’m a registered Republican who just watched her party spend much of the summer pushing through new cuts to Medicaid. I’m also here to tell you why I’m an unlikely supporter of the program. My son’s life depends on government assistance. Recent cuts to Medicaid at both the federal and state levels mean millions of families like mine could soon be at a loss for how to care for our disabled loved ones.

In February 2021, during a routine ultrasound appointment when I was 17 weeks pregnant with my third child, David, doctors discovered that he had a set of life-threatening fetal anomalies. Our boy had an excruciatingly rare midline cleft lip and palate and was missing critical portions of his brain. We were told he fit the profile for a baby that had trisomy 18 and trisomy 13, or a disorder called holoprosencephaly, when the brain fails to divide appropriately into separate hemispheres. The first days after David’s diagnosis were otherworldly. Each subsequent day of my pregnancy was a nightmare. I became a person in pain.

Expecting David to be stillborn, we were amazed when he was born at term. At the hospital, after M.R.I. scans revealed strange imbalances in the size of his brain, we were told to expect him to die from intractable seizures. To our surprise, we were eventually discharged. There was nothing more to do — no treatments, just waiting. I thought David would die overnight.

But David lived. We celebrated his fourth birthday in July. I do not understand the course of his life; I am simply grateful. David does not walk, talk or eat independently. He is visually impaired and has hearing loss. He has an unrepaired cleft palate open to protruding brain tissue, covered by a thin layer of mucous membrane. Developmentally, David is like a 10-month-old baby. He is our joy, and it is our privilege to parent him.

Caring for David is holy work, but it takes a village. His extensive medical conditions mean he meets the criteria for institutionalized care. But because of Medicaid, David is able to live at home, where he belongs, surrounded by people who love him.

North Carolina’s Community Alternatives Program for Children, or CAP/C, is a home- and community-based services waiver that provides essential services to more than 3,700 children like David across our state. Doctors’ appointments, surgeries, many therapies, adaptive equipment, specialized food, medical supplies, respite care workers (who provide temporary relief to caregivers) and more are all provided for him by Medicaid. I am even paid a living wage to care for my son. David’s life simply wouldn’t be possible without this program — which keeps him healthy and alive. Medicaid is David’s village.