Learning disabilities, sensitivity to light and sound, repetitive movements and self-harm – these are just some of the effects of autism spectrum disorder.
According to the Centers for Disease Control and Prevention, an estimated 1 in 68 children are diagnosed with the neurodevelopmental disorder in the United States.
There is no cure for autism, but there is something that can dramatically improve the quality of life for people with the condition. A therapy called applied behavioral analysis (ABA) is often prescribed for children on the spectrum.
“It is so important that all children diagnosed with autism have access to ABA,” Bluffton mother Sophia Townes said.
Early intervention is key to helping a child with autism, and the sooner that child can begin ABA, the greater the potential there is for him or her to become an independent adult, Townes said.
Townes’ 6-year-old son, Jack, was diagnosed with autism three years ago and has been receiving ABA therapy since summer 2015. Therapists work with Jack on behavior modification, social skills and basic life skills for hours each day.
Within just a couple of months of starting ABA, Jack was able to say his first sentence: “I want chicken.”
He can now communicate his basic wants and needs. He is even able to interact with friends. But his parents still have one big concern – the risk of him running away and getting hurt. Townes said 50 percent of children diagnosed with autism exhibit elopement behaviors.
“You cannot turn your back on him,” Townes said about her middle son. “This is where ABA becomes life saving for our son. It is far too often you hear of an autistic child that wandered off, unknown, and drowned.
The problem with ABA is the expense. On average, the therapy costs a family $60,000 a year, Townes said. Even with private insurance, the out-of-pocket cost is extremely high.
Because of this, when Jack was diagnosed with autism, his parents were encouraged to apply for Medicaid through the Katie Beckett waiver, which was expanded in 1982 through the Tax Equity and Fiscal Responsibility Act (TEFRA). It offers insurance to children with disabilities despite their parents’ income.
Unfortunately, South Carolina Medicaid has the lowest reimbursement rate for ABA therapy out of all 50 states, Townes said. The nationwide average reimbursement rate is $43.41 with the exception of South Carolina, according to the autism advocacy organization Autism Speaks.
Some states pay as much as $60 an hour for the services, but South Carolina pays $17.28 an hour, Autism Speaks said. Townes would like the reimbursement rate in South Carolina to be raised to $40 per hour.
Jack is also on his parents’ private insurance plan through Blue Cross Blue Shield, but the company has not reimbursed them a cent since August. Townes and her husband, George, who is a dentist in Bluffton, spend $6,000 a month on ABA for Jack.
“We are fortunate that we can come up with the funds – for now,” Townes told the lawmakers. “A year from now, who knows what will happen?”
Last year, several providers in South Carolina, including Progressive Behavior Consulting, where Jack goes for ABA in Bluffton, stopped accepting Medicaid patients because they could no longer afford to pay their therapists.
Townes, who is the Lowcountry Autism Foundation program coordinator and an advisory board member, recently testified in front of the South Carolina House Ways and Means Subcommittee in Columbia.
House members will soon vote on the budget for the Department of Health and Human Services, which funds Medicaid in the state. If Medicaid is not properly funded, then the reimbursement rate for ABA will not be sufficient.
“Many South Carolina families cannot afford to pay out of pocket for their child’s ABA,” Townes told the committee. “There are now over 2,000 children in our state waiting to start or restart their ABA therapy. By denying Medicaid funding, you are condemning these children to live a life where their full potential will never be known.”
Amy Coyne Bredeson of Bluffton is a freelance writer, a mother of two and a volunteer with the Tuberous Sclerosis Alliance.