On an otherwise uneventful Sunday, fifty-one-year-old pastor James Brigman was preaching a sermon about Abraham and Isaac at his church in Rockingham when he heard a voice. Not just any voice, mind you, but God’s, with a simple message: practice what you preach. Brigman has a daughter with special medical needs, and he’d been thinking about the Senate's proposed health care plan, which could make drastic cuts to the Medicaid-funded program his family relies on. And so, less than a week after his epiphany and without any preparation, Brigman laced up his shoes and decided to walk the 356 miles to Washington, D.C., from his home in Rockingham, where he is pastor of St. Paul United Methodist Church. He hadn’t done much planning at all, save for reading a few guides online about walking long distances. By his side in a van would be a sixteen-year-old boy from his church, offering food and reminding him every so often to stop and take a drink of water.
"His job is to make me take my breaks and make me drink my water because sometimes I get stubborn," Brigman says. "I got to give him credit, because you don't find too many sixteen-year-olds that will take time out of their summer break to do humanitarian work."
Brigman’s objective is simple. His nine-year-old daughter, Lauren Faith, has a rare medical condition that requires full-time attention. She is nonverbal, confined to a wheelchair, and fed through a feeding tube. To care for Lauren, the family relies on Medicaid—the state- and federally funded health-insurance program for millions of low-income and disabled Americans. She is one of about twenty-three hundred children in North Carolina enrolled in the Community Alternatives Program, or CAP, which uses Medicaid funds to provide services for children and adults with disabilities and extra needs. For Brigman and his wife, the program has been nothing short of a game-changer. It has allowed the two of them to work—Brigman, two jobs—while two nurses care for Lauren sixteen hours a day.
"If we didn’t have the CAP for my daughter, we would have had to sell our business and I wouldn’t be able to work," he says. "Because my daughter is a twenty-four-hour-care child. She has to have a person awake watching her twenty-four hours a day. So, in order for her to live."
But Brigman is worried about the fate of the program that has kept the family afloat for years, now that deep Medicaid cuts are on the horizon. The program is among those that could be targeted under the Senate’s proposed bill to repeal and replace Obamacare, known as the Better Care Reconciliation Act, which would make significant cuts to Medicaid, slashing funds by upward of $700 billion by 2026. That would have a significant impact on the children of North Carolina; about one million of them are on Medicaid, and they comprise about two-thirds of all Medicaid enrollees in the state. Should the Republican health care plan move forward, there would be about 142,000 more uninsured children in the state over the next five years, the Urban Institute estimates.
“These are children, many of whom are from low-income families, others have disabilities, and some have really unique special health care needs,” says Rob Thompson, senior policy and communications adviser for the advocacy organization N.C. Child. “And for these kids, Medicaid is their source of health insurance. It’s the thing that does everything from providing them with basic check-ups to ensuring that they have the life-saving equipment at their homes that keeps them out of institutions. So when we talk about drastic cuts to Medicaid, it’s no different than talking about drastic cuts to children’s health care."
The Senate’s proposal would overhaul the Medicaid program in two important ways. One, it would undo the Obamacare provision that allowed states to expand Medicaid coverage—which nineteen states, including North Carolina, declined to take part in. And two, it would change the way the government provides states with Medicaid funding, moving away from the program currently in place, in which the government matches a percentage of states’ Medicaid funding, to a per capita cap. Under the Senate’s plan, the government would essentially provide states with a fixed amount of money per Medicaid enrollee in each state, without taking into account enrollees’ specific medical needs. It’s an approach many experts say would shift the cost burden away from the federal government and onto the states, whose budgets are already spread thin.
A recent analysis of the Senate’s draft bill last month by the Brookings Institute found that, had the proposed cap been implemented in the 2000s, it would have resulted in significant reductions in federal Medicaid funding: “The Senate’s proposed per capita cap would have reduced federal funding to state Medicaid programs by $27 billion in 2011.”
Though Republicans have long espoused the need to repeal and replace Obamacare as a primary policy objective, their antipathy for Medicaid is not as often discussed. But reconfiguring the program into a per capita cap—which is how the Senate’s bill would approach Medicaid funding—has been a long-sought goal of many fiscal conservatives. Indeed, as far back as 1981, President Reagan argued before a joint session of Congress that Medicaid was not "cost-effective," contending that "Washington provides the states with unlimited matching payments for their expenditures; at the same time, we here in Washington pretty much dictate how the states are going to manage those programs. We want to put a cap on how much the federal government will contribute, but at the same time allow the states much more flexibility."
That may be a compelling policy argument for some fiscal conservatives, who view Medicaid as yet another entitlement program, but it tends not to resonate with people who actually rely on the program, like Brigman.
"I’ve heard about them capping, putting caps on the amount that each child or person is allowed to have," he says. "How do you put limits on a person’s life? You know, how do you sit there and say that a dollar bill is worth more than a family’s livelihood?"
The CAP program has not been identified specifically as a target for cuts in the Senate's bill, but cuts to Medicaid spending could mean that state lawmakers would decide to reduce funding and services for the program. So when Brigman heard that the program could be among those on the potential chopping block under the Senate proposal, he decided to walk. He knows his life would be dramatically different without it.
"I would like to know what they’re going to do with her and me if they do [cut the program] because I wouldn’t be able to work and pay taxes," he says. "I’ve got a lot of people I've talked to that wouldn’t be able to work and pay their taxes either. Because as far as me just letting my daughter die because she can’t get the services and the care she needs, that’s not an option. So I would have to sell everything I have and when the resources run out, I don’t know what would happen."
Brigman also created a Facebook page, A Voice for Lauren Faith Brigman and All Medically Fragile Children/Adults, to monitor his daily progress and post photos of his trek. Others have posted photos and their own personal stories on the page, as well.
"This is our Christopher," wrote Rhonda Nelson yesterday. "Who has multiple disabilities like your Lauren Faith … and depends on Medicaid and CAP-C. I am in prayer with you for you walk for Christopher too."
Brigman says that's precisely what he's doing: walking for children who can't go to D.C. on their own two feet. When he finally makes it, he plans to meet with the staff of Republican Senator Thom Tillis, whom he says he would like to invite into his home.
"I would love for some of these lawmakers to just come in and sit down with my daughter or anyone’s daughter or son that’s in this situation and get to know the facts, get to know that these children are human beings," he says. "Just because she doesn’t speak and she can’t walk doesn’t mean she doesn’t deserve the same as everyone else."