They went to two Louisiana town halls and left disappointed. Now they’re looking to charter a bus to Washington, D.C.
BATON ROUGE, LOUISIANA — Angela Lorio made many trips to the Louisiana state capitol, pleading state officials to shield the services that provide for her disabled son, John Paul, and many like him.
On Friday, instead of traveling to downtown Baton Rouge to speak to state legislators, she went to north Baton Rouge to speak to Senator Bill Cassidy (R-LA) about her son’s condition. Over the course of a taxing day, Angela, joined by her husband Neil and friend Jessica Michot, was unsuccessful, and was unable to share what’s at stake for John Paul if the Republican health care plan becomes law and there are big cuts to Medicaid.
“We wanted him commit to not making cuts to Medicaid,” said Jessica.
Angela and Jessica’s sons were both born pre-mature, at 27 weeks. Angela’s son John Paul and Jessica’s son Gabriel spent 164 and 382 days, respectively, in the hospital. Both, John Paul and Gabriel are 4 years old and have had significant health issues which require intensive medical care.
To receive comprehensive quality care at home, both moms applied for Residential Options Waivers (ROV) through the Louisiana Medicaid Home and Community-based Waiver Program. This Louisiana Medicaid waiver is designed to provide an alternative to nursing home care. People who obtain these types of waivers, reap all the benefits of institutionalized care but instead are treated in the privacy of their own home.
Four-year-old John Paul is still recovering from a brain hemorrhage. He also breathes through a tracheotomy tube in his throat, which requires constant monitoring and cleaning. John Paul has around-the-clock home nursing, which was how Angela and Neil were able to attend the two town halls. The bulk of his care is funded through Medicaid’s optional waiver program, Angela said. The ROV waiver, which first began serving patients in 2010, could be among the first programs hurt under the Senate’s health care plan — called the Better Care Reconciliation Act (BCRA) — due to robust Medicaid cuts.
As documented in a three-part series in the Advocate, over the last few years, Louisiana state lawmakers have passed laws that safeguard nursing homes’ funding, rather than strengthening home- and community-based programs. There is currently a Louisiana law that requires the state to increase biannually the daily rates they pay nursing homes. Because of the strong pull the nursing homes have in Louisiana, Angela and Jessica started Trach Mamas of Louisiana in 2016 to talk about alternatives. The group now has 80 members, who either have a tracheotomy tube or breathing tube themselves or have a child who does.
“You hear Cassidy and other Republicans say ‘leave it up to the states,’ and this is why I’m concerned,” said Angela. “State funding favors nursing homes,” she said.
Angela and Jessica weren’t able to talk to Cassidy during the first town hall on Friday. Angela was able to get a word in with Cassidy after the second town hall. Neil, her husband, sparked conversation with Cassidy; Neil says he played football with Cassidy’s brother in college.
But she wasn’t able to go into specifics about John Paul’s condition and the state waiver program. Instead she asked him to hang a pillowcase she wrote on, which read: “Medicaid cuts = my son’s death.” The senator refused. Later Angela and Jessica approached the senator’s staffers and requested to meet with the senator one-on-one. The staff said they’d look into it. ThinkProgress reached out to Cassidy’s staff and is waiting for comment.
Both Angela and Jessica voted for Cassidy. “We thought he was going to fight for us. We thought we would be safe with a doctor going to Washington,” Angela said. Now they are thinking of charting a bus to Washington D.C., hoping to get another chance to explain their situation.
Mothers with sick children in Louisiana try to talk to their senator about Medicaid was originally published in ThinkProgress on Medium, where people are continuing the conversation by highlighting and responding to this story.