At 5 a.m. Saturday, earlier than when she gets up for work, Rebecca Ellis dressed, fed and bundled her two sons for the 90-minute drive from Mandeville to Baton Rouge.
It was Public Testimony Day before the Senate Finance Committee and she wasn’t going to miss the chance.
It’s an annual ritual when the state budget arbiters gather to hear regular people, rather than high-priced lobbyists and corporate officials, argue to include funding for their programs in the $24.3 billion state spending plan for the fiscal year that begins July 1.
The Senate Finance Committee took testimony from about two dozen everyday people, championing funding for the state health care services that help them cope every day.
Ellis says she understands that filling a $1.6 billion budget deficit means “wants” outstrip “needs.” But that seems to be the theme every year.
“It’s frustrating to do this year after year, so that he can have a service he qualified for in 2007,” Ellis said, adding that one of her sons is on a waiting list. “It’s frustrating to keep having to have this conversation.”
About 72,000 Louisiana residents have developmental disabilities. About 11,380 are receiving services and 13,000 are on waiting lists. A lot already are in institutions and many more aren’t aware that services are available.
Early Steps is a program that provides therapy and teaches parents the best ways to handle the disabilities that afflict their infants and toddlers. Much of the research shows that providing services early, minimizes the disability, said Rhonda Chube, of Baton Rouge, one of dozens of parents wearing yellow shirts with the words “A Waiting List is NOT a Service.”
To help balance the budget in 2012, eligibility in the program was ratcheted back, keeping her son, Gavin, who has a severe speech delay, from being able to qualify.
It’d take $2.7 million in state funding to restore the wider eligibility in place prior to 2012. The House added $500,000 to the state’s spending plan.
Early intervention is imperative, Chube said. It provides therapy at a time it can be most beneficial for the children.
Senate Finance Committee Chairman Jack Donahue told Chube that legislators are going to do the best they can given the budget situation. “I know you hear that every year and I’m tired of telling you about it,” he said.
The Mandeville Republican, who has had to dress in suits for the past 15 days straight, spent much of the hearing closeted in a side room negotiating how to balance the budget. He plans to hear House-passed, revenue-raising measures in the Senate Finance committee starting Tuesday and hopes to get to House Bill 1 on Wednesday.
After the hearing, Donahue said of the public testimony in light of the budget problems, “We like to try to help where we can and from that perspective it’s frustrating.”
Most of his days are spent poring over spreadsheets and talking with sophisticated elected officials, experts and lobbyists. His policy discussions are abstract, a bit removed from the people impacted. But the people who testified Saturday gave very specific and personal descriptions of what a particular state program does for them every day.
“Sometimes when you’re looking at numbers, you forget the faces,” Donahue said. Hearing their stories touches the core reason why he, and other legislators, entered public service — to help people in need.
“We want to put into their ears the problems we have,” said Kevira Johnson, an unemployed Baton Rouge mother with a master’s degree in business. She lost her job after missing too much work to care for her nine-year-old, Keira, who has Angelman’s Syndrome. Keira is unable to speak, needs help walking and requires one-to-one assistance for many tasks.
“We are being worn down emotionally and financially,” Johnson said.
She asked for dollars to expand home- and community-based care through a Medicaid program called the New Opportunity Waiver, or NOW.
The waivers pay to provide assistance so that the disabled person can stay at home, rather than be shipped off to an institution. The waiver program creates opportunities for the disabled to become more self-reliant and allows parents to work, through a variety services, from caring for the disabled to buying groceries and driving them to appointments.
After public testimony last year, the Legislature included enough funding to fill 1,000 vacant waiver slots and add 200 new slots.
But 772 of those slots were frozen in the mid-year budget cuts a few months ago, said Sandee Winchell, executive director at the Louisiana Developmental Disabilities Council. About $3.38 million in state general fund is needed to fill the vacant slots and provide services for those waiting the longest.
At $7.7 million, an additional 500 people could get off the waiting list, Winchell said.
“I’m not a lobbyist, I’m an advocate,” said The Rev. Patrick J. Mascarella, a blind Baton Rouge priest who is a familiar figure, along with his guide dog, Pace, on public testimony days. He comes every year to discuss state services that help the blind, but his observations are true for all who attend Public Testimony Day.
“We’re a visible representation of the decisions these officials have to make,” Mascarella said.
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