LEE COUNTY, Va. (WJHL)- Ethan Cox was two-years-old when doctors gave him a death sentence.
The diagnosis was spinal muscular atrophy, a condition that causes muscles to slowly lose function.
“He’s never taken a step,” said mother Rebecca Cox.
Around his 14th birthday, Ethan’s original life expectancy, the family got news that changed everything.
“It was one of the best moments of my life when the geneticist looked at me and said ‘he’s got a third copy of this gene. He can live to be an old man,'” Rebecca said.
“His quality of life depends upon the care he receives now and that’s the reason why his physical therapy and stuff is so very important,” said father Jimmy Cox.
In a complaint filed with the Virginia Department of Education’s Divison of Special Education and Student Services, the family is claiming Ethan received inadequate physical therapy at Lee High School for months. The complaint also accuses Lee County Public Schools of violating state and federal laws by denying Ethan critical services.
Division Superintendent Dr. Brian Austin declined to comment on the accusations while the state’s investigation is ongoing.
The complaint cites therapy notes in Ethan’s individual education plan (IEP) that show he was in discomfort during physical therapy sessions from April 2018 to November 2018.
“It got so bad it was pretty much torture because they were not doing what they were supposed to be doing,” Ethan said.
He said the school’s contracted physical therapy team was directed by doctors in his IEP to lay him on a mat and stretch his muscles to help him maintain lung function. Instead, he said they would make him sit up in a hard chair. Ethan has screws in his spine.
“I could not breathe. My legs were going numb. My back was hurting. I told them continuously and they just act like they never heard me,” Ethan said.
His parents said their complaints to the district fell on deaf ears.
They ultimately told Dr. Austin they would no longer allow the school system to bill Medicaid for Ethan’s physical therapy.
The complaint cites a recording where Austin allegedly states that if the school cannot bill Medicaid, Ethan cannot receive services. Later in that recording, Austin says, “Give us a chance to fix it before we pay out of our operating budget.”
After the meeting, the family said the district refused to provide Ethan services “until another IEP meeting.”
The complaint said Ethan missed three therapy sessions between December 2018 and April 2019. It said this is a violation of Ethan’s “Free Appropriate Public Education (FAPE),” a right for all students guaranteed under the Individuals with Disabilities Education Act (IDEA).
The law states, in part, that “a school division must provide special education and related services to a child with a disability in accordance with the child’s IEP.”
“It’s the same as saying ‘if you’re not going to let us bill your insurance, we’re going to let your son die,'” said Jimmy Cox. “That’s the way I took it, that’s what it meant to me and I lost it.”
The complaint said the therapy resumed and improved once the disAbility Law Center of Virginia got involved. The advocacy organization filed the complaint on the Cox family’s behalf but declined to comment for this story.
According to VDOE, this is the sixth complaint filed with the Division of Special Education and Student Services since the 2008-09 school year. That’s more than any other school system in Southwest Virginia.
Ethan said he’s speaking out because he doesn’t want this to happen to other students.
“There’s a lot of kids out there with disabilities and they have a right to stand up for themself and they need to as much as they can,” Ethan said.
The division was granted an extension to file an initial response with the state by November 27th, 2019. Dr. Austin confirmed they’ve submitted the necessary documents.
VDOE sent a notice to the school system notifying them that the complaint “is sufficient pursuant to federal special education regulations.”
The complaint could be resolved through mediation or an investigation by VDOE.
The notice said the state would investigate if the school system failed to meet the student’s IEP. VDOE would also investigate accusations that special education students are being forced to board the bus before the end of the school day, which would be in violation of Virginia law that requires disabled students have the same instructional time as everyone else.
The notice said it would not investigate “inadequate physical therapy services” because the allegation did not describe a specific violation of federal or state law.