Court for autistic youth reflects gap in health care services

In April, the Detention Alternatives for Autistic Youth (DAAY) Court was created to help autistic children and young adults access services and treatment. Since its inception 25 cases have passed through the court.

The court is meant to bypass months-long waitlists and immediately direct children diagnosed with autism to treatments, services, and individualized attention that are essential to preventing repeat offenses.

But the court is also a reflection of a system that has failed to intervene much earlier in the lives of young autistic people, when such intervention can make all the difference in behavior patterns as children get older.

Clark County District Court Judge William Voy, who runs the court’s Family Division, which includes the DAAY Court, said once a child lands in court it often takes up to six months or longer to connect them to service providers that offer effective therapies.

“What happens is that if a kid is not getting the proper therapeutic intervention they are just going to keep getting arrested and brought back to us anyway,” said Voy. “If a kid gets treatment at 3 or 4 they’re going to do far better than a kid who finally got that level of treatment at age 18.”

Young offenders average about three and a half citations before they get a formal petition that lands them in DAAY court, said Voy. Most cases that make their way through the court are battery of various levels, often domestic violence charges or assault of a school employee or healthcare provider they encounter. The district attorney has the discretion to choose to file petitions against these minors.

“It’s just really a physical representation of the school-to-prison pipeline because for children with autism who don’t get these services — the natural side effect of that is aggression,” said Bailey Bortolin, a policy director for Nevada Coalition of Legal Service Providers, who works on behalf of autistic children in the legal system. “It’s very common for an autistic child to bite someone because they’re not learning through services how to correctly express themselves.”

The ultimate goal of the DAAY Court is to enroll children going through the court system in therapies that will halt the cycle of repeat offences. Applied Behavior Analysis, or ABA, a therapy that teaches new behaviors to a child with autism, redirects repetitive or negative behavior, and uses positive reinforcement to build progress, is widely regarded as the most effective early intervention treatment for autistic youth.

Juvenile Court Hearing Master Soonhee “Sunny” Bailey handles the routine DAAY court operations. In many ways, she said, it’s a race against time for many children who find themselves in the system.

Before her court, is an 18-year-old who first entered the system at seventeen. At the time, his parents had him committed to Seven Hills Hospital. The court has since connected him to supportive services and asked his parents to apply the basic principles of ABA therapy to their household.

“I’ve been very good with my behavior,” said the teen to the court. “I’ve been able to keep myself out of trouble. I’m trying not to get in trouble as often.”

“He had an epiphany a few weeks ago, he’s just totally changed,” his dad said. “If this is what I get I’ll be happy. I can live with this.”

While the 18-year-old’s progress has been significant the family expressed frustration at the glacial pace of the process. Bailey reminds the family the wait for ABA treatment through Medicaid can take months. For this family and many others obtaining an initial diagnoses, getting a prior approval and finding a provider willing to accept Medicaid is slow and difficult.

“The first thing you need to do is you need to show a parent that ABA is going to work when it goes into effect,” Bailey said. “Because we can be waiting up to six months.”

Nevada expected to spend about $42 million of its Medicaid budget for autism treatments between 2015 and 2017 to fund Gov. Brian Sandoval’s plan to get 1,879 autistic children in treatment. That number was based on an assumption that 30 percent of the 6,000 children reported by the state Board of Education as having an autism diagnosis would be eligible for Medicaid. That 6,000 has since grown to 8,500.

Currently, only about 290 children in the state are receiving ABA services through Medicaid. These numbers indicate a 36 percent increase in access to care since June 2017, but falls far short of the budgeted caseload of 1,879. Additionally, only some $1 million of the appropriated $42 million was spent by Medicaid through March 2017.

Advocates and lawmakers say a large part of the discrepancy is because of a workforce shortage of ABA providers. Still for many families, even finding an ABA provider that takes Medicaid can be difficult and frustrating.

“There is a worker shortage but the situation is even direr for Medicaid patients because many providers are not able to take Medicaid,” said Lynda Tache, the Chair of the Nevada Commission on Autism Spectrum Disorders Insurance and Funding Subcommittee. The Registered Behavior Technician rate is too low to sustain the cost of employment, Tache said.

Registered Behavior Technician or RBTs work one-on-one with children with autism and are the paraprofessionals who administer ABA therapy. There are only 559 Medicaid-accepting RBTs as of this month.

“If the rate isn’t sufficient to be able to employ those positions then the families aren’t able to get those services,” Tache said. “These families with Medicaid who are low-income should not be penalized for that.”

The Nevada Commission on Autism Spectrum Disorders is joining with several community groups, service providers, and families in supporting a bill to increase Medicaid reimbursement rates for RBTs. Nevada has the fourth lowest Medicaid RBT rate, most states pay an average of $16 an hour more than the Nevada rate.

The idea is that an RBT rate increase will encourage people to enter the field and allow providers to train more RBTs. Both of these will serve to increase the workforce and hopefully decrease wait times for time-sensitive ABA therapy.

The bill will be carried by Las Vegas Democratic State Sen. James Ohrenschall, who also carried a bill in 2009 requiring private insurers to cover up to $36,000 a year in autism therapies that then-Republican Gov. Jim Gibbons signed.

Still, more children in need are stuck on wait lists looking for providers. The Autism Treatment Assistance Program (ATAP), a state funded program that was created to assist parents and caregivers with the expensive cost of providing autism-specific treatments to their child, had a wait list of 449 autistic children in Nevada, with an average wait time of 353 days, as of September. Their average age of children on the wait list was 6. But the more time children spend waiting, the less chance they have at leading a successful life, and the more likely they are to land in court.

“What we are trying to avoid is having adult offenders on the spectrum because there are no services in the adult court,” said Bailey. “We actually don’t even know how many people in the adult criminal justice system are on the spectrum, because no one ever takes data on that.”