Families of children with autism fear for kids' lives without in-person therapy

Friday, June 5, 2020

Families of kids with autism plead for return of in-person therapy

Kristin Thorne talks with parents who fear their children with autism are regressing without in-person therapy.

LONG ISLAND (WABC) -- Some children with autism are regressing into negative and violent behavior because they have not been receiving critical in-person therapy due to the coronavirus pandemic, according to their families and therapists.

"They're either slamming their heads against something or they're trying to head butt each other or they're about to break an arm or a tooth," said Jacqui Saunders of her two sons, 7-year-old Ashton and 3-year-old Ronin, who both have autism.

Saunders, of Nesconset, said before the coronavirus pandemic, her three children were getting a combined 106 hours of therapy every week. Her 5-year-old daughter receives therapy for behavioral issues.

She said now Ashton receives just 30 minutes of virtual instruction four days per wee, while Ronin receives two 45-minute sessions every week.

"With daycare, it's all indoors," she said. "They've remained open. If that is allowed,there's no reason why special needs is not essential, especially when classrooms are usually about six kids."

Melissa Swailes, of Bay Shore, said her two children who have autism are having more tantrums without their in-person therapy.

"The regressions that we're seeing now, these are going to take a while to go back the way that we were," Swailes said.

She said many of the negative behaviors her children are displaying had virtually gone away after years of in-person therapy, but they have now resurfaced.

While her children used to receive three to four hours per day of therapy, they now get only three hours per week of virtual therapy.

"The regression and the behavior that our children, well, my children, are going through are things I haven't seen in years," Swailes said.

Saunders and Swailes said if they had applied for therapy through their medical insurance, therapists would be allowed inside their homes. But because they are receiving the services through their school districts, it is considered education, which New York Governor Andrew Cuomo said cannot resume.

"Going through insurance is very expensive," Saunders said. "It's unfortunate that the help that we get right now is based on how much we can afford to spend. How can camps open, and we as a special needs community need to continue to have virtual learning?"

Saunders and Swailes are among many families with children who have special needs who are pleading with state leaders to allow in-person therapy in their homes or to allow classes for special needs students to resume immediately.

"I don't know how the governor could avoid an email where I said I am fearing for my kids and other people's kids, their lives," Saunders said.

Kristin Abbate, who is a licensed behavioral analyst who works with children with autism, said she is seeing alarming regressions in children.

"They will bang their head against the wall," she said. "They'll bang their head against the wall. They'll pull their own hair out. They chew their nails down until they're bleeding. They are all behaviors that might have happened if we had never treated them, but with such intense therapy, we were able to get rid of all these behaviors. And now, a lot of families are seeing them come back."

Abbate said she is doing virtual instruction, but it is not sufficient for many children with autism.

She said techniques of Applied Behavior Analysis, known as ABA, which is used to instruct children with autism, require physical touch and interaction.

"Those techniques of ABA, which is a very large and complex science, are all things that need to happen face to face," Abbate said.

On Tuesday, New York State Assemblywoman Melissa Miller (R-Atlantic Beach) wrote a letter to Governor Cuomo urging him to reconsider his decision to declare all summer school programs to be via remote or distance learning.

"You have just authorized all summer camps to open June 29, so how is it possible that you would not allow the children who have special needs to return to their school-based programs to receive the vital therapies and in-person instruction that they so desperately need?" she wrote.

Miller said it would provide an opportunity for schools to test out new COVID-19 safety protocols.

"This would be a perfect template for figuring out how to distance students, how to navigate the buildings, how to figure out busing," she wrote.

Suffolk County Executive Steve Bellone told Eyewitness News reporter Kristin Thorne Wednesday that he understood the frustration the families must be experiencing and that he would follow up with state leadership.

New York State Assemblyman Mike LiPetri (R-Massapequa Park) is hosting a rally Friday with parents of students with special needs to call upon Governor Cuomo to allow small group instruction and in-person therapy.

"We are now allowing children to go to summer camp and restaurants to offer outside dining, but those students, who, by law, require year-round in-person services for their mental and physical development, are being completely neglected and forgotten," LiPetri said in a press release.

The rally will be held Friday June 5 at 11 a.m. outside LiPetri's district office in Massapequa Park.