- Expert: Graham-Cassidy would reduce funding for Medicaid through a per-capita cap
- "If home health care was taken away, our life would be devastated," mom of 5-year-old said
(CNN)Jessica Michot's voice breaks, and her eyes fill with tears.
Since July, the 33-year-old mother of a severely disabled boy has been trying to meet with her senator, Bill Cassidy, R-Louisiana.
This year, she and other mothers of children with disabilities took a bus from Baton Rouge, Louisiana, to Washington to speak with their congressional representatives. She failed to meet with elected officials at the time.
Now, she feels even greater urgency to meet with Cassidy, who is a physician.
Michot's 5-year-old son, Gabriel, was born 13 weeks early, and while the Michots have private insurance, Gabriel's medical bills are so high that they also get help from Medicaid. The Graham-Cassidy bill, the GOP's latest effort to repeal Obamacare, which the Louisiana lawmaker co-sponsored, calls for dramatic cuts in Medicaid.
On Thursday, Michot and others met with a Cassidy staff member at his Baton Rouge office.
She says she left the meeting dissatisfied.
"We shouldn't have to fight politicians for survival," Michot said. "We should only have to fight for our kids to survive medically and be healthy."
Ty Bofferding, Cassidy's spokesman, told CNN that the new health care bill "upholds our commitment to take care of our most vulnerable by putting Medicaid back on a sustainable, long-term path." He added that the bill ensures "that those with pre-existing conditions will have access to both adequate and affordable health insurance coverage."
The preterm births of Gabriel and his twin brother, Michael, caused complex health conditions for both children, including bronchopulmonary dysplasia. This chronic lung disease makes it hard to breathe. Michael died of the condition around age 1, while Gabriel lives with a tube, called a trach, surgically placed in the front of his neck to help him breathe.
Medicaid pays for the ventilator Gabe needs to assist him. Medicaid also pays for nurses to come to the house.
"He receives 12 hours a day, seven days a week of home health nursing," said Michot, a resident of Laplace, Louisiana. "He currently has two support workers. They do tasks from bathing to keeping him occupied so I can clean the house, wash dishes, spend time with my daughter."
The proposed health care legislation has Michot worried.
"Everything we're reading about this bill says that it's going to cut the federal funding," she said. She fears that less federal funding would ultimately mean fewer services for children with disabilities.
Graham-Cassidy would reduce funding for Medicaid through a per-capita cap, according to Diane Rowland, executive vice president of Kaiser Family Foundation, a nonprofit focused on national health issues. The legislation would send the states a fixed amount of money per Medicaid enrollee, known as a per-capita cap, starting in 2020.
Although the law would protect some disability programs, Medicaid spending for disabled children who are covered through waivers is subject to the caps, Rowland wrote in an email.
Gabe, Michot said, "wouldn't survive the per-capita caps: That's one surgery, and it's gone. He would meet that cap."
Over time, Rowland wrote, the Graham-Cassidy bill will reduce federal funding for Medicaid and leave states to make the decision on what to cut as they try to balance their budgets.
"There is no protection on where the state will have to turn to cut dollars," Rowland wrote. "So essentially, this provision doesn't protect disabled children from having their coverage, benefits, or services reduced or eliminated."
Michot told the health care staffer that "y'all know" the only two items the state will consider cutting will be education and health care.
"Unfortunately, many, many people are pro-education," Michot said. "And many, many people think that people on Medicaid mooch off the state: They just take services, but they don't give back."
'Our lives would be devastated'
Last year, Michot and Angéla Lorio, another mother of a disabled child, co-founded the Trach Mommas of Louisiana, a peer support organization for parents of children with tracheostomy. As a member of Louisiana's Emergency Management Disability Aging Coalition, the group recently participated in relief efforts for the victims of natural disasters.
"We served a lot of people during the great flood last year, and then we reached out to Texas (this year)," Michot proudly told the staffer. She said she would not have been able to do that without Medicaid.
"The staff that Gabriel has provided for him through Medicaid allows him to not only live but to thrive," she said. "It allows him to function at the best level possible and to have some normalcy despite his medical complexities.
"If home health care was taken away, our life would be devastated."
In July, Michot and other parents of children with disabilities chartered a bus in Baton Rouge and headed to Washington to protest proposed cuts to Medicaid. Despite their best efforts, the families were unable to meet with their elected officials. Because the health care bill under review at that time did not pass, no budget cuts were made.
Though relieved, Michot and others felt and continue to feel nervous about what's to come.
Bofferding said Cassidy's staffers "have met with Ms. Michot and members of her organization on multiple occasions in both Louisiana and Washington, D.C."
"The bus trip, the long-term advocacy -- it's all worth it because it's my son's life," Michot said. "It's the lives of his friends; it's the lives of my peers. It's the lives of our friends. You can't put a price tag on that, so it is worth it."
Still, she admits feeling "disappointed" in the meeting with Cassidy's staffer.
"We wanted to know some more specifics on the per-capita caps, on pre-existing conditions, because that's something Sen. Cassidy committed to, and that's something he seemed to like from the Affordable Care Act," Michot said.
Since Michot cannot afford to care for her son without Medicaid, the Graham-Cassidy bill could take away his ability to live, she said, and she's not speaking "dramatically."
"It would either be foster care or institutionalization or death," Michot said. "We live with life and death."
"I'm very upset with Sen. Cassidy as a physician," she said. "He should know better."
Speaking for the other families in Trach Mommas, Michot said, "We want to keep our kids alive. We want to keep our kids thriving through occupational therapy, physical therapy, speech therapy.
"We want them to be productive members of society, but most of all, we want them to live."