A bill that advocates believe would have expanded funding for an effective early intervention treatment for hundreds of autistic youth was watered down during the last days of the legislature.

The bill, SB174, was originally written to increase Medicaid rate pay to certain therapists who administer a treatment that is widely considered the most effective therapy for children diagnosed with Autism Spectrum Disorder (ASD).

Applied Behavioral Analysis or ABA, as the treatment is called teaches new behaviors, redirects repetitive or negative behavior, and uses positive reinforcement to build progress in children with autism. The treatment is carried out by professionals called Registered Behavior Technician’s (RBT’s).

Julie Kornack, director of public policy for The Center for Autism and Related Disorders, says their center is one of the only providers of ABA who accepts Medicaid patients in Nevada.

While speaking in support of SB174, Kornack said the current Medicaid rate pay is “unsustainable” and that the center loses revenue with every Medicaid patient they serve due to the high cost of the treatment.

“Without an increase in rates, CARD will be forced to join other providers in canceling its Nevada Medicaid contract,” wrote Kornack.

But the part of the bill that would have increased Medicaid rate pay was axed by an amendment submitted by the bill’s primary sponsor Sen. James Orenschall, D- Las Vegas, and adopted on June 1st, two days before the end of the legislative session. The amendment was then pushed through the Senate on June 1st and the Assembly the next day on June 2nd without a public comment period.

“We are disappointed at how that happened,” said Lynda Tache, the Chair of the Nevada Commission on Autism Spectrum Disorders Insurance and Funding Subcommittee. “I do know that all of us to our best ability were trying to follow everything. We were all here on standby ready to testify all the way up until Sunday night.”

“We even had stakeholders from the (Nevada Commission on Autism Spectrum Disorders) and self-advocates at the Grant Sawyer building on Saturday and Sunday trying to follow everything,” Tache said. “We’re disappointed and we wish we had more time to justify the rate increase.”

“We did not get an opportunity to present our testimony in the second House or in the money committee,” said Bailey Bortolin, the outreach and policy director for the Nevada Coalition of Legal Service Providers, who worked on the bill. “It is disappointing we weren’t able to change the rate to increase the number of providers.”

Nevada has the fourth lowest Medicaid RBT rate. Most states pay an average of $16 an hour more than Nevada does. According to advocates, the low rate has lead to less providers willing to accept Medicaid.

The bill’s original language would have increased the reimbursement rate for RBT’s from $31.30 per hour to at least $48 per hour as a way of retaining RBT’s and expanding the number of providers who will accept Medicaid, eventually leading to the ability to serve more children with autism.

While presenting the amendment at a May 30 hearing, Orenschall said the ABA funding aspect of the bill was deleted due to “fiscal constraints” found by the Assembly Committee on Ways and Means and the Senate Committee on Finance.

The state’s Division of Health Care Financing and Policy in the Department of Health and Human Services projected the additional Medicaid provided service would cost $6,027,523 for the biennium, of which $2,145,769 would the state’s share of the cost.

But Bortolin, the outreach and policy director for the Nevada Coalition of Legal Service Providers, disagrees that funding is an issue when it comes to ABA treatment for children on Medicaid.

“Funding does not seem to be the main problem at this moment,” Bortolin said during the May 30 when the amendment to strip funding was introduced. “Governor Sandoval allocated a lot of money in this last biennium, $42 million for Medicaid went to serve this population and only $3.2 million was spent and many children went without services.”

During the last biennium, former Gov. Brian Sandoval requested about $42 million for the Department of Health Care Financing and Policy to provide ABA for an additional 1,879 Medicaid eligible children.

“The clearest piece of evidence” of something gone wrong in the funding is “if you look at Medicaid, the most conservative estimate, we should be serving 2,550 children and we’re serving maybe 271,” said Bortolin. “That is a huge disparity and it’s not because we haven’t been able to put the funding there. Again, the money that was appropriated last session by Governor Sandoval did revert back to the rest of Medicaid and remained unused.”

One part of SB174 that did survive authorizes the Legislative Council Bureau to perform an audit in order to investigate these disparities and evaluate other barriers to service that prevented more children from receiving state funds. Advocates like Bortolin believe the audit will show a need for an increased RBT reimbursement rate for as providers have argued for years.

“I’m glad the state realizes that if they are not going to increase the rate they are obligated to find out what the issue is and why families are not getting served,” said Tache, the Chair of the Nevada Commission on Autism Spectrum Disorders Insurance and Funding Subcommittee.

“We have more people than ever involved. We are going to get more organized and we are going to stay on top of all of this and make sure the audit is getting done.”

“We are not going away. Everyone is more passionate than ever.”