The “refusal” to pay for treatment puts kids with the disorder at risk, the suit claims

Suzanne Egan believes that intensive therapy could change the course of her 5-year-old son’s life, but she can’t afford to pay for treatment of his severe autism.

A class-action lawsuit filed in U.S. District Court seeks to require the state to cover the cost of applied behavior analysis, or ABA, treatment for him and other children with autism who are on Medicaid.

Egan and the Hawaii Disability Rights Center are suing Patricia McManaman in her official capacity as director of the state Department of Human Services on behalf of Egan’s son and others like him. The plaintiffs are represented by Alston Hunt Floyd & Ing and the center’s attorneys.

“By its refusal to cover the cost of ABA treatment under Medicaid, DHS has unlawfully denied critically needed health care to children with autism spectrum disorder,” the suit alleges. “As a result, these children are less likely to reach their full developmental capacity and are more likely to be institutionalized as adults.”

The complaint contends the children are entitled to such therapy under the federal Medicaid Act, which requires “early and periodic screening, diagnosis and treatment,” including medically necessary behavioral health services and therapy.

McManaman’s spokeswoman referred media inquiries to the state attorney general’s office, but no comment was forthcoming Tuesday.

One in 68 children in the United States has an autism spectrum disorder, according to the latest figures from the Centers for Disease Control and Prevention. In Hawaii an estimated 1,500 people under age 21 have been diagnosed with the disorder, the Legislative Reference Bureau reported in 2013.

The developmental brain disorder hampers the ability to communicate and interact socially and can cause disruptive behavioral problems. Early intervention can help children learn important skills, according to the CDC.

Attorney Louis Erteschik, executive director of the Disability Rights Center, said similar lawsuits elsewhere have succeeded in forcing other states to cover autism treatment for children on Medicaid.

Applied behavioral analysis can cost as much as $50,000 a year, but it increases the chances of living a more normal life and can save money in the long run by reducing institutionalization, Erteschik said.

Egan, a single mother who lives in Hawaii Kai, said she has seen the difference therapy can make for her son, who is nonverbal. With help from his grandfather, who dipped into his retirement fund, the boy had 25 hours a week of ABA treatment over the summer.

“There’s a very marked difference in his level of function, particularly with communication and behavior, since we started paying out of pocket for evidencebased applied behavioral analysis,” Egan said. “His functional communication proficiency just improved dramatically. He was able to communicate via sign.”

But he needs to continue intensive therapy for it to have a lasting effect, and the family can’t afford that, she said.

“In the formative years the brain is still developing,” Egan said. “If you do it early enough, you’re going to seriously ameliorate that condition.”

As the number of children diagnosed with autism grows, states are grappling with how to handle services for them. At least 31 states specifically require insurers to cover treatment for autism, according to the National Conference of State Legislatures.

Legislators in Hawaii have considered bills to mandate private insurers to cover autism treatment, but none have passed. They did set aside $50,000 this year for an actuarial analysis of the cost of providing insurance coverage for screening, diagnosis and treatment of autism spectrum disorders here, including the cost and benefit to the Medicaid market.

In testimony on that bill, the Department of Human Services questioned whether applied behavior analysis produces clinically significant benefits.

“The bill states that ABA is evidence-based, but evidence-based experts would disagree because the quality of evidence of effectiveness is low,” McManaman testified.

She estimated it could cost DHS $24 million if Medicaid covered applied ABA treatment for autistic children up to age 6 in the state. Erteschik said the advocacy organization Autism Speaks pegged the cost at $3 million for Hawaii.