- Associated Press - Friday, May 27, 2016

BATON ROUGE, La. (AP) - Parents of disabled children chastised Louisiana lawmakers on Friday for obligating them to return year after year to plead for health care financing.

“This has to stop. It’s shameful,” said Angela Lorio of Baton Rouge, whose disabled 3-year-old son accompanied her to the Senate Finance Committee.

They filled three committee rooms waiting to provide emotional testimony. Some mothers wore pink shirts saying “Medically Fragile Children Matter.” Others wore yellow, with the words “A Waiting List is NOT A Service.”

Together, they begged senators to protect children’s health programs from budget cuts as lawmakers consider a nearly $26 billion budget proposed for the financial year beginning July 1 that is $600 million short of what’s needed to fund the state’s current programs and services.

The plan backed by the House would deeply reduce Medicaid “waiver” programs that provide home- and community-based care to the developmentally disabled and the elderly, services that can keep them out of institutions.

“Can any of you imagine facing a decision of having to put a 5-year-old in a nursing home?” said Karen Scallan, of Destrehan.

Scallan’s son has multiple disabilities and a heart problem requiring surgery later this year - after his services might be eliminated. That could mean financial catastrophe for her family, she said, but “our situation is by far not the worst.”

Lorio brought along her son John Paul, who uses a tube to breathe and requires round-the-clock monitoring, to remind senators that lives are at stake.

“Without help, we are not capable of being his sole caregivers long-term,” Lorio said. “Our family deserves to live together.”

Elaine Harmon, of Lake Charles, broke down in tears, urging them to “keep helping the people” like her 17-year-old son Marcus, whose brain was damaged in a surgery.

She said her boy decided against attending the hearing: “He said, ‘Momma, why I gotta keep coming here every day to show these people I’m disabled and need help?’” Harmon said.

Jessica Roy urged lawmakers not to cut pediatric day health care for “medically fragile” children like her adopted 2-year-old daughter Juno, who needs an oxygen tank to breathe and takes food through a tube.

“How can we ask them to bear the burden of our budget shortfalls?” Roy said.

Others talked of elderly parents who rely on adult day care centers. One woman said her father waited a year for a Medicaid program, only to die four days before receiving a letter telling him he would get the help.

As the parents wept, senators also wiped away tears.

“I’m so sorry that you feel like you have to come beg for your child’s life,” said Sen. Sharon Hewitt, R-Slidell. “We’re going to fix it.”

Sen. Ronnie Johns, R-Lake Charles, told the parents: “You are our priority.”

Sen. Regina Barrow, D-Baton Rouge, is in her first year on the Finance Committee.

“I’ve never gone through this level of testimony before,” she said, pausing to compose herself. “I want to first say that I’m sorry.”

Lorio told the senators: “I know this day is hard for y’all. I can’t tell y’all how hard it is for us.”


Follow Melinda Deslatte on Twitter at https://twitter.com/melindadeslatte

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