Mom battles Wake County school district over special needs son

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3-year-old Gavin (WTVD)

Mary Beth Ainsworth's son, Gavin, was born with Down syndrome. The 3-year-old can't feed himself and has problems swallowing and chewing.

"If he doesn't learn how to chew properly before swallowing, he can basically lose his gag reflex. He could choke and die," she explained.

Once a week, Mary Beth has a professional feeding therapist teach Gavin how to safely eat so he won't choke. The other times, she expects her son's Wake County pre-school to provide a therapist to feed him.

"You need someone qualified in feeding to conduct the feeding therapy. Without the proper qualification, he is put at risk for choking," she explained.

She found the school, Weatherstone Elementary in Cary, has no certified feeding therapists, but says she's willing to pay for one out of her own pocket so it wouldn't be a cost to taxpayers.

"We've been asking for months that they allow our private therapist or contract a therapist who is qualified to provide the service and it has been denied again and again and again," she said.

"There is not an actual policy that addresses feeding therapy," said Bill Hussey, the director of the Exceptional Children's Division of the state Department of Public Instruction.

"What we say and what the policy governing services for children with disabilities states is that we're to meet the unique needs of the individual child," he explained.

But, it's how those unique needs are met that pits Mary Beth against the Wake County School District. For months, she has been fighting with the district to provide a certified feeding therapist for her child, but she says it hasn't.

"They have told us that feeding therapy was unnecessary and they could meet his needs through occupational therapy," Mary Beth explained.

The Wake County mom took her fight to a higher authority, the US Department of Education's Office of Civil Rights.

It investigated and found her son is entitled to a feeding therapist. The Civil Rights Office notified the state Department of Public Instruction which sent a letter to the school district directing it to "develop an appropriate program for the student."

"Wake County has developed and has a multidisciplinary team that is addressing the issues relative to what this child needs developmentally to learn how to swallow and to learn to do that independently," said Bill Hussey.

That team is composed of speech and occupational therapists and a nutritionist to work on Gavin's problem, but it doesn't include a feeding therapist.

"I thought the law is clear. It's a service he's entitled to. He's been diagnosed with a developmental feeding disorder," Mary Beth said. "I just assumed the school district follows the law and they have the best interest of our kids at heart."

"They are trying through this multidisciplinary team to address the unique needs of that child," explained Hussey. "Sometimes those things aren't always the same as what the parent may want. They make a decision relative to what they can do and how they can do it. It can be two different things but the same purpose can be met."

Mary Beth doesn't agree.

"The therapists aren't trained to provide the service. It's pretty black and white in that sense. You have a person who's trying to provide a therapy who is not qualified to provide a therapy," she said. "For me, it's not good enough because they're not qualified to do it and they're going to cause him to choke and become seriously injured or worse."

In the meantime, Mary Beth continues her fight for a feeding therapist and is now in hearings with the Wake County Public School District to get one for her son before, she says, it is too late.

"I am not going to allow my child to be put in danger because Wake County is choosing to be negligent in providing this service."

The district would not speak to us on camera but gave us this statement:

"Though we cannot comment specifically on services any student receives, we have more than 20,000 students with an individualized education plan. The letter from N.C. DPI regarding feeding therapy is new guidance. Our understanding from previous consultations was that feeding therapy was not a permitted service."

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educationdown syndromewake county schoolshealthI-TeamCary
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