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Mother's unwavering efforts on behalf of autism community bear fruit in Nevada

Las Vegas Sun - 10/22/2023

Oct. 22—Whenever Michelle Scott-Lewing's phone rings, she answers.

Those calls usually come from parents across Nevada of children with autism spectrum disorder, the developmental disorder that affected one in 36 8-year-olds in 2000, according to the U.S. Centers for Disease Control and Prevention. The mother of two autistic children, Scott-Lewing has become one of the public faces of the statewide push to connect families affected by autism to vital services.

"At the end of the day, you find yourself just doing all that you can and the best that you can," said Scott-Lewing, who serves as the executive director of the Autism Coalition of Nevada, the nonprofit that spearheads legislative efforts advocating for state resources for those affected by autism.

Also known as ACON, the coalition is a group of fewer than a dozen volunteers who field phone calls and emails from families to learn what resources are available and how they can take advantage of them. They also help facilitate early diagnosis and therapeutic interventions, as well as treatment and support services and medical care.

The group has assisted more than 8,500 individuals affected by autism and is expecting that number to grow in the coming years due to a pair of bills signed into law earlier this year by Gov. Joe Lombardo.

"I think it's important for these families to know that they're not alone, and that there are plenty of us out here that are willing to help you," said Scott-Lewing, who also serves as the executive vice president and regulatory affairs officer for a medical device company.

Senate Bill 411 established a first-in-the-nation program allowing family courts to adopt diversion programs for children diagnosed with or suspected to be on the spectrum. It essentially expanded a similar program launched in 2018 in Clark County's8th Judicial District Court by Judge Sonny Bailey to family courts across the state. Her Detention Alternative For Autistic Youth (DAAY) Court has earned the attention of officials in other states who are seeking to establish similar programs.

"It's amazing to me how close we are and how everyone comes together," Bailey said. "And everyone's here to help everybody, and there's not any egos involved. It's about the children. And I'm just truly amazed. I mean, we have funding issues. We have all the same problems as any other state, but everyone's heart is just golden and they're willing to help you out."

The bill's primary sponsor, state Sen. James Ohrenschall, D-Las Vegas, told the Sun the DAAY Court can serve as an important intervention tool for troubled delinquents who may otherwise never have been evaluated or been considered on the autism spectrum.

"Many children on the autism spectrum find themselves in the juvenile delinquency system," Ohrenschall said in a statement. "A large percentage of these kids on the spectrum have never had an evaluation from a professional or the chance of receiving the therapies that have proven very effective for many children on the spectrum."

Ohrenschall also praised Scott-Lewing and Bailey for their continued advocacy to push for the bill, which passed unanimously through both chambers of the Legislature.

"I am proud to have worked with Judge Sonny Bailey, Michelle Scott-Lewing and the Autism Coalition of Nevada, representatives from the Nevada District Attorneys Association and the Washoe and Clark County Public Defender's Offices as well as countless parents of children on the spectrum and their providers," Ohrenschall continued. "I hope that we will soon see therapeutic court diversion programs for children on the autism spectrum statewide following the example Judge Bailey has set here in Clark County with the Detention Alternatives for Autistic Youth Court."

ACON also backed Senate Bill 191, which passed unanimously and requires Medicare to cover the cost of behavior analysts, assistant behavior analysts and registered behavior technicians for patients with autism until they are 27. Previously, such patients were covered until they were 22.

"What we really wanted to do was make sure there were services for a lifetime, but we knew that was too expensive and we needed to do something that was intermediate," said state Sen. Heidi Seevers-Gansert, R-Reno, the bill's primary sponsor. "So, we decided to move a bill forward to expand coverage similar to that which is available to all children, if they're on their parent's insurance."

By extending those services an additional five years, Scott-Lewing estimates roughly 1,500 individuals statewide will be eligible again for treatment.

"Continuity is critical," Scott-Lewing said. "If you interrupt that progress, a lot of times they regress and start immediately going backwards."

ACON was formed in 2007 under founder Ralph Toddre, who was appointed by then-Gov. Jim Gibbons in 2008 to serve as the first-ever commissioner of the Nevada Commission on Autism Spectrum Disorders. And in 2009, lawmakers passed a bill that made Nevada the 11th state in the nation to mandate insurance coverage for autism treatments — an initiative spearheaded by ACON, Scott-Lewing said.

The Legislature in 2011 passed a pair of bills that established the Autism Treatment Assistance Program into Nevada'sAging and Disability Services Division — a statewide program that provides temporary assistance and funding to pay for evidence-based treatment, such as applied behavioral analysis, verbal behavioral therapy and pivotal response treatment, for children on the spectrum.

ACON also helped usher in a bill in 2017 that raised the insurance coverage rate for certain therapies, which was necessary to retain therapists from leaving Nevada and practicing elsewhere, Scott-Lewing said.

While resources to treat autism have increased in Nevada and elsewhere over the last two decades, advocates say many groups rely solely on volunteers and even pay for treatment costs out of their own pocket. A lot of that, Scott-

Lewing said, can be attributed to bureaucratic red tape that can delay when organizations can intervene.

That delay in services can lead to fewer people being evaluated or diagnosed, and therefore lead to not as many state dollars being utilized, and hesitancy by lawmakers to further fund these programs.

"There is a traffic jam there of paperwork and red tape that creates a backlog of families actually getting the services that they need," Scott-Lewing said. "It's a vicious cycle, where if we could ever get things functioning well, like a fine-tuned engine in those offices and in those state agencies, then you'd see the flow would start to happen. Families would get the services, the numbers would go up."

Bailey, the Clark County judge who oversees its autism court program, notes Nevada is unique compared to large states like California where groups compete for resources. Groups here can collaborate to provide adequate care for those in need, she said. But with expanded services being offered with the passage of laws from this year, groups like ACON are always in need of donations, Scott-Lewing said.

ACON can accept donations through Venmo, Zelle, or by check, as well as the donation page on the group's website, www.aconv.org/donate, Scott-Lewing said.

"We need donations so that we can stay," Scott-Lewing said. "We want to keep doing what we do."

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