Roughly 1,900 students with autism are enrolled in Hawaii public schools but the vast majority are not receiving required behavioral health treatment during regular school hours, a new lawsuit against the Hawaii Department of Education and Department of Human Services alleges.
Brought in federal court by the Hawaii Disability Rights Center, the lawsuit alleges the two state agencies have failed to provide or ensure that Applied Behavior Analysis, or ABA services, are made available to the students when necessary, violating federal laws including the Medicaid Act, Americans with Disabilities Act and the Individuals with Disabilities Education Act.
ABA is an individualized behavioral health therapy that treats kids with autism through scientific methods known to improve communication and social functioning and also reduce interfering behaviors.
The issue, according to the Disability Rights Center, is that both agencies are flouting their responsibility under the federal law to ensure that students who require ABA services are receiving them from licensed and qualified professionals during the school day without having to leave campus.
“In my view, we tried very hard in the last year or two to resolve this without having to file suit,” said Louis Erteschik, executive director of the Hawaii Disability Rights Center. “This was a total last resort.”
The action follows repeated testimony before the Board of Education and Legislature by advocates for autistic children concerning coverage and licensure, and a 2014 lawsuit against the DHS.
In that lawsuit, the Hawaii Disability Rights Center successfully convinced a federal court that DHS, as a Medicaid administrator, must cover ABA services for Medicaid-eligible children through age 21.
DHS compliance with the 2016 court order has been good so far, according to Erteschik, except when it comes to ABA services during school hours. In those instances, the suit says, the agency has failed to ensure that Medicaid-eligible children with autism are getting the proper care at school.
That’s where the Department of Education comes in: The lawsuit states that the DOE is denying private ABA providers access to school campuses to administer the therapy — even when the cost is covered by Medicaid or the student’s private health insurance at no cost to the DOE.
“This is a problem that could be very easily fixed and shouldn’t ever have required a lawsuit,” Erteschik said. “There’s no reason these providers can’t start going into the schools tomorrow.”
The DOE’s refusal to accommodate, the suit alleges, violates the ADA and prevents kids with autism from receiving a free and appropriate education under the Individuals with Disabilities Education Act since it forces parents to pull their kids out of school so they can get the needed therapy elsewhere.
In a statement Thursday, the Department of Education declined specific comment except to say it “provides all services to students eligible under the IDEA (that are) determined appropriate and necessary through the Individualized Education Program process, including ABA.”
According to Amanda Kelly, a board certified behavior analyst and legislative chair of the Board of Hawaii Association for Behavior Analysis, the lawsuit is “specific to the lack of coordination of DHS and DOE.”
“Our state has literally failed these children on both the medical and educational front. They (DHS and DOE) are both responsible,” she said.
The lawsuit seeks a preliminary injunction against both agencies, arguing the lack of ABA services to kids and young adults up through age 22 who require it during school hours are causing them irreparable harm.
“We’re asking the court to tell DHS and DOE to talk to each other and work it out so affected students can get the services they need during school,” said Kristin Holland, an attorney with Dentons law firm in Honolulu — previously known as Alston Hunt Floyd & Ing — which is handling the case.
She said the small percentage of kids in Hawaii public schools who do receive ABA services through their Individualized Education Programs is the result of parents fighting their way through the system or waging due process cases.
“It’s this inscrutable process … that parents of children with autism are expected to navigate,” she said. “The end result is children are not getting services they’re entitled to during school. It’s putting parents in an impossible situation, where they have to pull the kids out of school to get services.”
Reached Thursday, a spokeswoman for DHS said the agency was “still reviewing” the complaint with counsel and would not comment.
Child advocates say it’s not just the availability of ABA services for minors that’s important, but the quality of the care.
In the last several years, the Legislature has tried to address the issue.
In 2015, the Legislature passed a law that mandates commercial health plans cover ABA services for minors with autism.
That same year, Hawaii passed a law creating licensure requirements for individuals who provide applied behavior analysis to kids or adults. As of Jan. 1, 2016, behavior analysts are required to be licensed. In 2016 and 2017, the DOE requested that teachers administering ABA in schools be exempt from the so-called Licensure Law, according to a declaration Kelly filed in this case.
The DOE has said it was working on building capacity with a staff of licensed providers. It continued asking for an exemption in 2018.
In April 2018 testimony submitted to lawmakers, School Superintendent Christina Kishimoto said the department’s efforts to provide ABA services to students was “a work in progress” and said the DOE needs “additional time to build its internal capacity” of licensed behavior analysts and paraprofessionals to provide treatment.
The DOE acknowledges that of the 1,900 kids with autism in public schools, only about 330, or 17 percent, receive ABA through their IEPs.
The lawsuit alleges that DOE personnel fail to acknowledge professional autism diagnoses when assessing a student’s IEP, ignore parents’ requests for such services and allow unqualified staff to determine whether ABA should be included in an IEP.
In her declaration, Kelly said she is aware of “numerous DOE teachers who are aware of these issues with DOE but too afraid to come forward because they fear retaliation.”
This past legislative session lawmakers pushed through Act 205, under which the DOE was supposed to come up with an implementation plan to seek reimbursement of any Medicaid-billable ABA services provided to students with autism. An initial report was due Oct. 8 with quarterly reports due to the Legislature and Board of Education after that.
“The biggest concern is that they haven’t posted for positions and haven’t really made any good faith effort to build capacity,” Kelly said. “Have other states figured it out? Yes. Are we even trying? I don’t think so.”
A hearing on the preliminary injunction is set for January.
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