Removing barriers to early intervention for autistic children

 By Aviroop Dutt-Mazumder 

Policy changes in South Carolina recommended by the South Carolina Act Early Team led to a fivefold increase in the number of autistic children younger than 3 receiving early intensive behavioral therapy and could serve as a model for other states.

“The big issue with autism is that the waitlist for ASD (autism spectrum disorder) evaluation is typically six months,” said Act Early team member Jane M. Charles, M.D., an MUSC Children’s Health developmental pediatrician. As a result, early intervention was delayed as children waited for a formal diagnosis. 

Acting on recommendations from the South Carolina Act Early Team, South Carolina changed its policies to pay for intensive behavioral intervention in children under 3 revealed to be at high risk for ASD by a two-stage screening process. Previously, a formal diagnosis of ASD had been required.

This growth was reported in the February 2017 issue of the journal Pediatrics. These children became eligible for early intensive behavioral therapy, also known as applied behavior analysis therapy or ABA, after statewide implementation of a two-tiered screening process to identify who children who are “presumptively eligible” for intervention. ABA is the gold standard for treating children with ASD and is known to sometimes dramatically improve outcomes and quality of life. However, ABA can be expensive, putting it out of reach for many families without governmental support. 

In South Carolina, BabyNet is part of a federal program, with state-level intervention, that pays for early behavioral interventions for children 3 and under. Prior to the policy changes, a formal diagnosis of ASD was required before BabyNet would pay for early intervention. That led to delays in treatment. 

The team, which included David A. Rotholz, Ph.D., of the University of South Carolina School of Medicine; Anne M. Kinsman, Ph.D., of the Greenville Health System; and Kathi K. Lacy of the South Carolina Department of Disabilities and Special Needs; saw a way to remove this barrier. 

Charles praised the change. “If the eligibility of children under 3 could be determined more promptly, then ABA therapy, which is between $60,000 and $70,000 yearly, could be done at no cost to families and these children could get the treatment they need.”

At the team's request, and with the close collaboration of BabyNet/First Steps and the South Carolina Department of Disabilities and Special Needs, approval was granted by the U.S. Department of Education to use BabyNet funds to pay for ABA therapy for children who failed a two-stage screening process, even if they had not yet received a formal diagnosis.

First children were screened, typically by a primary care physician, with the Modified Checklist for Autism in Toddlers. If that screen showed they were at high risk for ASD, they underwent the Screening Tool for Autism in Toddlers and Children, also known as STAT. Because STAT must be performed by experienced evaluators to be effective, the South Carolina Department of Disabilities and Special Needs developed a training program for STAT evaluators to ensure there was an adequate pool to meet the demand.

After implementation of these policy changes in South Carolina, the number of children aged 18 to 36 months receiving ABA therapy grew from 53 in 2010 to more than 265 in 2015.

Providing early ABA to children presumed to have ASD is critical because it is the only intervention that can potentially improve the IQ of an ASD child. The two-stage screening process was highly effective at identifying the children who needed these services and had a very low false-positive rate. Only 16 (2.5 percent) of the children deemed “presumptively eligible” for ABA were later found not to have ASD.

In South Carolina, a Medicaid waiver enables Medicaid-eligible children aged 3 to 11 years to receive ABA therapy, and state funds pay for ABA therapy for eligible children in that age group who do not receive Medicaid. The state agreed that any child who was deemed “presumptively eligible” for ABA through BabyNet and later received a diagnosis of ASD would continue to receive ABA therapy after reaching age 3 under the Medicaid waiver or through the special state appropriations. This also included having the child bypass the lengthy waiting list for Medicaid waiver ASD services. As a result, children with ASD not only receive ABA early, when it is most effective, but can continue treatment uninterrupted as they grow older.

“One thing we know is that when intervention is done early and intensely, especially among children with the most significant deficits, there is improved social interaction and communication,” Charles said. The simple policy changes removing barriers to the early provision of such services to children is a promising trend and could be replicated by other states, she said.

Rotholz agreed. “The collaborative effort of our South Carolina Act Early Team has dramatically increased the number of children at risk for ASD who receive early intervention in a way that is nationally unique,” he said. “It provides a tremendously important service to these children and demonstrates the innovation of our South Carolina partner universities, organizations and agencies.”

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Jane Charles holds the Jeffrey Edwin Gilliam Memorial Chair for the Study of Developmental Disabilities.

Aviroop Dutt-Mazumder is a postdoctoral scholar focusing on neuromodulation in the College of Health Professions at MUSC.