- Associated Press - Wednesday, March 2, 2016

BATON ROUGE, La. (AP) - Ashley McReynolds describes the kitchen in her home as “a death trap” to her 9-year-old son Cooper, plagued with a genetic disorder that makes him feel like he’s constantly starving along with a list of other health troubles.

In his worst days, before they had assistance monitoring Cooper, McReynolds said her son would reach into boiling pots of water to get noodles, stand on heated oven doors to find food hidden in the microwave and eat food out of the trash can until he was ill.

“The kitchen is supposed to be the heart of the home. But for us it’s a death trap. Steel locks on the fridge, a keypad on the pantry, all to keep Cooper alive. Without these locks he would eat himself to death, literally,” McReynolds told the Senate Finance Committee.

Parents of children with developmental disabilities pleaded Wednesday with senators weighing deep cuts to state services to pass tax hikes to protect programs that help them care for their children. Senators wiped away tears as parents struggled through their stories.

“We’re sorry you have to be here,” Sen. Jack Donahue, R-Covington, told them.

Similar parents have shown up at tax and budget hearings throughout the special legislative session, seeking support for taxes proposed by Gov. John Bel Edwards to rebalance the budget and end cycles of repeated shortfalls. Republican lawmakers, particularly in the House, have been resistant to many of the Democratic governor’s tax proposals, saying they would prefer deeper cuts.

“I am a fiscally conservative individual and like most people, do not like to pay more taxes, but there is also a time and a place when you just have to do the right thing for the thousands of families in Louisiana who need help,” said Bryan Kutz, one of the parents who testified at Wednesday’s hearing.

Health care services that serve thousands with developmental disabilities are threatened as lawmakers decide how to close a hefty budget shortfall that was estimated to reach $900 million or more before June 30 and to top $2 billion for the following fiscal year.

McReynolds said without help from the state, her family would struggle to be able to raise Cooper at home, where workers take Cooper to the park, help him bathe and do his homework and monitor his food and medicine.

“We need you to help to keep our families together,” McReynolds told the committee.

Kutz and his wife Cindy already have felt the pain of budget cuts in their household. After four years on a waiting list, they finally started receiving assistance from the state that Bryan Kutz described as giving them “a few hours of respite care” from the constant monitoring required for their 14-year-old son Blaine.

“The relief was short-lived. We received a letter in the middle of January telling us that due to the budget constraints our contract was being terminated Feb. 20,” Bryan Kutz told senators, as his wife wiped away tears.

Kutz’s son has Alfi’s Syndrome, a rare chromosomal disorder that causes both mental and physical impairments.

“He’s just too much for one person to handle outside of the home,” Cindy Kutz said. During a meltdown, “he runs into windows, doors, walls, furniture and does not even feel it.”

Senators on the committee said they were working to protect the health services.

“We’re doing everything that we can,” said Sen. Sharon Hewitt, R-Slidell, choking up.


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

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