Stuck: Disabled adults struggle to get care
It’s just a matter of time before Matt Potter is on his own.
He knows that eventually he will have to rely on staff — to lift him, to change him, to prepare his meals — but that, all too often, the staff just might not be there.
“It keeps him up at night. He sees that we’re aging, and he knows what he has to face. He’s too smart, and he knows,” Sarah Potter said.
Matt Potter, her 32-year-old son, has the face of a politician and the fire to match any advocate, having graduated from Wake Forest University. But he will never walk. With cerebral palsy, he has metal in his back, metal in his hips, and a body that acts like a stranger’s.
For the disabled already on Medicaid, finding providers or in-home caregivers can be a nightmare. Many providers either aren’t interested in taking Medicaid’s low rates or can’t afford to. Still more aren’t prepared to meet the specialized needs of the disabled population.
“There is a massive, massive issue with getting full staff coverage. It’s basically impossible,” says Matt Potter. “My parents are 70. If they weren’t here — and I know there is going to be a time when that is the case — I don’t know what would happen. I don’t know. I can tell you that I would not be able to get out of bed by myself, I would not be able to get to the bathroom, get food, change clothing.”
One of his nurses, who has been with them for almost three years, finally got a raise — to $8.25 an hour.
“People can literally make more money working at a fast-food joint,” Matt Potter says. “Your priorities are a little messed up if someone can make more slinging burgers than they can caring for a person with disabilities, who would be in a health crisis or institutionalized without the support staff.”
Matt Potter, too, has spent the better part of a decade on the Innovations Waiver waitlist.
But for the disabled, even getting a waiver doesn’t necessarily translate into getting health care. All too often it amounts to switching families from one waiting list to another, said Autism Society of N.C. Director of Public Policy Jennifer Mahan.
“There are a lot of families who have waited patiently and done what they could,” said Autism Society of N.C. spokesman David Laxton. “But even if you get a spot on the innovations funding for your kid, it doesn’t always mean that there will be somebody in that community that can provide those therapies.”
Part of the problem stems from Medicaid itself. It offers doctors low reimbursement rates, and those rates only sink lower once disabled children turn 18 and qualify as adults.
“For adults with disabilities, their doctor is the urgent care,” FIRST disability resource center Executive Director Janet Price-Ferrell said.
Further complicating care are the needs those with disabilities often have.
“Imagine that you’re a person with severe autism. You might have some challenges in the dental care, you might need sedation, and you’re an adult. And you have a dentist who is nervous,” said Mahan, exasperated. “The number of dentists in this state who take Medicaid and adults with autism is like two.”
For those with the severest disabilities, who are the most vulnerable, the problem is even worse.
“Parents feel like they’re a rat on a wheel, that they are sent on an endless chase: Try this person, they may have spots, try this provider, they may be able to get you in,” said disability counselor Rose Reif. “The reality is that very few people can support seeing a full caseload of folks that are on Medicaid. For the families, it’s a nightmare.”
She’s known families to uproot their lives, to abandon family farms and give up their livelihood, just to go to where the services are.
The existing shortages have experts concerned about adding 500,000 people to the Medicaid system. By 2020, Medicaid expansion would increase the unmet demand for physician services by more than 25%, says a model developed by the Cecil G. Sheps Center for Health Services Research at UNC Chapel Hill.
“If we’re talking about adding a half a million people to the Medicaid rolls, and we have a fixed number of providers who are willing to take Medicaid card in the first place — something has got to give,” Chris Conover, a health policy analyst at Duke University, said. “Not everyone is going to be able to get in.”
Both Potters support Medicaid expansion, on moral and practical grounds. But others eye the forecasted provider shortages and worry.
“The Medicaid expansion is going to help the uninsured and underinsured folks, but I think it’s going to flood the market,” Dave Curro, developmental disability support group Next Step facilitator, said. “More consumers, less providers. That’s the argument against it. Republicans wanted to provide innovations of labor slots instead of expanding Medicaid, and I’m all for that.”
But regardless of whether Medicaid expands, the problems will remain.
“If I were stuck in my bed, it’d be horrible, but I more than likely would not die. It’s not something that should happen ever, but I know people who could die if they don’t have that full coverage,” Matt said. “Yet there are legislators who are looking at this as nothing more than a balance sheet, and we are talking about people who could potentially die. I’m sorry that I can’t mince my words. I find it disgusting.”