For all of her 33 years, Ashley Volion has refused to back down.
Spastic cerebral palsy took away her ability to walk, clipped her speech and withered her hands. But, somehow, Volion controlled the spasms and refined her speech patterns, got a master’s degree in sociology, moved into her own apartment, got a job as a nonprofit policy analyst and even got the University of Illinois-Chicago to let her pursue a PhD in Disability Studies online, from New Orleans.
But now, Volion is worried that all her hard-fought gains will be wiped away by proposed cuts to Medicaid as Congress tries, yet again, to replace the Affordable Care Act, also known as Obamacare.
“I’m super worried, because the NOW Waiver and the services that I get through Medicaid allow me to live and work out in the community,” she said. “The flip side of that would be I would be stuck in a nursing home, not being able to contribute to society.”
The NOW, or New Opportunities Waiver, program pays for 24/7 assistance for Volion. Workers she hires and pays directly can help her at home and at her job at Advocacy Center of Louisiana, with everything from driving to cooking and cleaning to getting in and out of bed and using the bathroom. She estimates Medicaid pays $60,000 a year for those services, well more than she can earn.
But the NOW Program is not a mandatory part of the federally funded, state-run Medicaid program for the poor and disabled, the way nursing homes are. And with the latest Republican health care plan proposing to reduce Medicaid funding by more than $750 billion – or about 35 percent – over the next nine years, Volion doubts her waiver program would survive.
“Whenever something’s optional, those services are always the first to go,” she said.
So, Volion and other Medicaid recipients went to Sen. Bill Cassidy’s office in Baton Rouge last week to protest the Senate plan. They have put a lot of faith in Cassidy, R-La., because he is a physician who spent two decades caring for Medicaid patients in the state’s charity hospital system.
“As a doctor, by his oath, he is required and should have the best health interest of the population at heart,” Volion said. “That gave me hope that he will listen to us and what we have to say and really take our stories into consideration before he votes.”
Cassidy never said if he supported the official GOP plan or not. In spite of his unquestioned health care expertise, he was left off the GOP leadership’s team that crafted its version of repeal-and-replace. He proposed his own plan, known as the Patient Freedom Act, co-sponsored by moderate Republican Susan Collins of Maine, but no Democrats have signed onto it and some Republicans have criticized it for keeping Obamacare largely in-tact.
“Until a Democrat says they are willing to sign onto the Patient Freedom Act, which allows a blue state to do what they’re doing now, but allows a Red State to do something different, I’m not sure we’re ready for bipartisanship,” he said during an appearance on NBC’s Meet the Press on Sunday, alongside Democrat Tom Carper of Delaware.
When the Senate plan came out 12 days ago, Cassidy said he needed more time to read it. By the middle of last week, the Congressional Budget Office estimated about 22 million Americans would lose health care coverage under the plan, and a half-dozen Republican senators vowed to vote against it. By the time Cassidy came home for town hall meetings at the end of last week, he had essentially moved on, saying he would have to wait and see a new Senate version before he could say if he would support it.
Senate Majority Leader Mitch McConnell, R-Ky., has reportedly sent several alternative versions to the CBO for scoring so they can try again to get at least 50 of the 52 Senate Republicans to support it when lawmakers return to Washington next week.
Cassidy said he is pushing for a bipartisan approach, one that protects Medicaid assistance for low-income families. But he said at town hall meetings on Friday that the Medicaid expansion that was adopted by most states under Obamacare is not sustainable.
He said that because the federal government picked up the whole bill initially, states added people to Medicaid who could otherwise qualify for private coverage through their jobs. But soon the states will be responsible for 10 percent of the cost, hundreds of millions or even billions of dollars those states don’t have.
Cassidy’s solution: move families off Medicaid and onto private insurance wherever possible. And that prospect scares some of the nearly half million Louisianians who were added to the Medicaid rolls since last year when Democrat John Bel Edwards made Louisiana the 31st state to accept the Medicaid expansion.
That includes one of Volion’s caretakers, Tracey Brown, whose working family made too much money to qualify for Medicaid before the expansion, but not enough to afford private insurance and no option to receive it through their employers.
Now, Brown said she gets critical mental health care for post-traumatic stress disorder through Medicaid. She said her mother has a rare form of terminal cancer and is now covered under Medicaid, too.
But what if Medicaid is slashed?
“So, what you’re saying basically is, my mom’s gonna die, my friend’s not going to be able to live any kind of decent life, and I’m gonna go insane, is what’s gonna happen,” Brown said.
When she went to Baton Rouge last week, Volion handed Cassidy’s staff a formal invitation to the senator, asking him to meet with her at a “time and location to be determined at (Cassidy’s) convenience.” Apropos of her indomitable spirit, the invitation featured fancy calligraphy befitting a traditional Southern wedding.
Cassidy has not responded yet. He also declined WWL-TV’s repeated requests for interviews on the Senate health care bill starting the day it was released, June 22.