Testimony was at times tearful at the Louisiana State Capitol Friday, as the parents of children with disabilities pleaded with lawmakers to continue funding a state program that provides healthcare services.
"All they want to do is live a normal life. All they want is to be happy and healthy and be loved," Elaine Harmon told the Senate Finance Committee. Her son utilizes one of the state’s home and community based service waivers.
Under the budget planned passed by the House, five types of those waivers would be discontinued starting July 1, according to a spokesman for the Department of Health and Hospitals (DHH). Only the New Opportunity Waiver (NOW) would remain funded, as mandated in the House budget.
Among other things, those waivers allow disabled children and adults to be treated at home rather than in an institution.
"Our family deserves to live together, John Paul deserves the opportunity to continue to do this well, at home, where he's loved and provided for all the care he needs," said Angela Lorio, whose son John Paul was delivered at 27 weeks gestation and utilizes one of the waivers that could be eliminated.
In the governor’s budget proposal after the special session, waivers were funded while the state’s partnership hospitals that treat the uninsured took a cut, with four losing all funding.
Upon leaving the House floor, that budget had been altered, giving a deep cut to waivers while funding the hospitals at the level requested by the governor.
A spokesman for the DHH said it would cost approximately $37.5 million to cover the costs of the five unfunded waivers. That money from the state general fund comes with a federal match of $99.4 million.
Without the waivers, families could be forced to institutionalize their children since they would not be able to have someone come to their homes to provide treatment. The DHH spokesman said that could open the state up for legal action from the U.S. Department of Justice.
These pleas for help are nothing new at the State Capitol. For over a decade, those receiving waivers have returned to the Capitol time and time again to ask lawmakers to continue funding their program.
"The reason why my son didn't come today is because he said, ‘Why do I got to keep showing these people I'm disabled to get help?’" said Harmon, referring to her son Marcus.
"It is unconscionable that we have to come before committees again and again to plead to keep our waiver services for him and thousands of others," said Lorio.
The discussion was not lost on senators, who expressed interest in modifying the House budget proposal to put fund the waivers.
"We do care, and I'm so apologetic that you have to come back again in the same year," said Sen. Regina Barrow, D-Baton Rouge.
"We hear you clearly, and I can tell you, you are our priority," said Sen. Ronnie Johns, R-Lake Charles.
The Senate Finance Committee will adopt amendments to the state budget on Monday before the measure heads to the full Senate for consideration later next week.
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