On an otherwise uneventful Sunday in early July, fifty-one-year-old pastor James Brigman was preaching about Abraham and Isaac when he says God delivered to him a simple message: practice what you preach.
Brigman has a daughter with special medical needs, and he'd been thinking about the Senate's health care proposal, 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.
His 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 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."
When he started walking, Brigman was worried about the CAP's fate should the Senate's effort to repeal and replace Obamacare, known as the Better Care Reconciliation Act, become law. The BCRA, which died Monday night when two Republicans senators announced that they wouldn't support it, sought to slash funds for Medicaid by $772 billion over the next decade. That would've had 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.
"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 NC Child. "And for these kids, Medicaid is their source of health insurance. It's the thing that does everything from providing them with basic checkups to ensuring that they have the lifesaving 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 have overhauled Medicaid in two important ways. It would have undone Obamacare's Medicaid expansion—which nineteen states, including North Carolina, declined to take part in. And it would have changed the way the government provides states with funding, Currently, the government matches a percentage of states' Medicaid funding. Under the Senate's plan, the government would provide states with a fixed amount of money per Medicaid enrollee. It's an approach many experts say would shift the burden onto the states, whose budgets are already spread thin.
A recent analysis by the Brookings Institute found that, had the proposed cap been implemented in the 2000s, "The Senate's proposed per capita cap would have reduced federal funding to state Medicaid programs by $27 billion in 2011."
"I've heard about them capping, putting caps on the amount that each child or person is allowed to have," Brigman 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?"
Even though Senate leaders have pulled the BCRA, Medicaid cuts remain a real possibility. The U.S. House budget unveiled Tuesday morning proposes cutting $1.5 trillion from Medicaid over the next decade, double the cuts the BCRA sought. The House also wants to turn Medicaid into a block-grant program.
The CAP hasn't been specifically identified as a target, but any cuts to Medicaid would mean that state lawmakers could decide to reduce funding and services for the program.
"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," Brigman 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."
When he finally makes it to Washington—he's currently in Richmond—Brigman plans to meet with the staff of 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."
This article appeared in print with the headline "A Walk for Lauren"