Las Vegas Sun

March 29, 2024

Dealing with autism: Nevada has few services to help children with neurological disorder

When Florence LaRoy's son turned 3, her world turned upside down.

Jeffrey's tantrums and screaming had taken on a new intensity, and it frightened LaRoy and her husband, Gerald. When she took Jeffrey to the state-run Special Children's Clinic in Las Vegas to be evaluated, the doctors told her Jeffrey's outbursts were so severe that he couldn't be tested.

It would be two more years of wrong turns before Jeffrey would be diagnosed with autism.

"We had no idea what the word autism even meant," LaRoy said. "All I could envision was my baby being locked up somewhere."

The LaRoys soon discovered that Nevada offered little in the way of services for the disabled and even less for autistic children. They had to go to California and Oregon to find experts in the neurological disorder, which has no known cause or cure.

"We didn't know what to do, where to go," LaRoy said. "It was a terrible, bleak time."

Jeffrey is now 17, but little has changed in Nevada in 14 years. Parents of autistic children still have few places to go for help and most seek guidance out of state. LaRoy said she doesn't want anyone else to experience the despair her family faced.

To that end, she is fighting for a bill that would help autistic children statewide. If the bill passes it would provide opening costs for two public education centers and create a state-supported commission to serve as a clearinghouse on the disorder. The centers also would offer counseling services and support groups for the families, who often feel inadequate in the fight against autism.

"Whenever I get a call from a parent of a newly diagnosed child, it tears me up inside because I know what's ahead," said LaRoy, who works for the support group Nevada Parents Educating Parents. "The only services out there are a hodgepodge with little communication between agencies. It can be incredibly frustrating."

Many states have commissions, including California. The commissions do everything from tracking the number of cases statewide to handling applications for studies, grants and special funding.

"We need to increase public awareness, and that means reaching out to the public for help," LaRoy said. "Getting the state to acknowledge us is a step in the right direction."

Assemblywoman Ellen Koivisto, D-Las Vegas, sponsor of Assembly Bill 635, said Nevada needs to raise basic standards for social services. The legislation is awaiting review in the Assembly's Ways and Means Committee, where it was sent because of the funding request it contains.

"As a state we're at the bottom or near the bottom of just about every list when it comes to providing services for the citizens who need them the most," Koivisto said. "And in the case of children with autism, we're neglecting the citizens who are least able to speak up for themselves."

Just how many children in Nevada have been diagnosed with autism isn't known; no central office or agency keeps track.

What is known is that autism has been on the rise nationally for several decades, with an estimated one in every 500 children being diagnosed with some degree of the disorder, according to the Centers for Disease Control and Prevention in Atlanta. The Autism Society of America places the figure closer to one in 275 children.

B.J. Freeman, executive director of the Autism Evaluation Clinic at the University of California, Los Angeles, said it sees at least four families a month from Nevada. It provides training for parents for the intervention programs, which can require up to eight hours a day.

Many parents must pay to have evaluators visit from California each month to check on a child's progress.

Clark County School District's autism programs have an annual budget of $3.4 million, derived from state and federal grants. Of the 322 children in the district diagnosed with autism, 22 families receive funding, which ranges from $1,200 to $1,900 a month for home programs. The more intensive programs can cost families up to $30,000 annually. It's not unusual for parents to take on second and third jobs to pay for the therapy.

Several states, including Wisconsin and Indiana, provide Medicaid waivers to qualified families to pay for home programs, something that Nevada families want. Although Medicaid currently covers some expenses, it doesn't extend to the behavior therapy that many experts believe is key.

"The cost of institutionalizing these children later on will be much greater than simply doing the right thing to help them now," said Mary Bryan, whose 7-year-old daughter, Kelsey, is autistic. "My biggest goal is that my daughter is able to live a productive life with as little help from the state as possible."

The Bryans set aside a large, sunny room in their Summerlin home for Kelsey's schooling, which includes five hours a day of one-on-one work with a teacher. There are vocabulary flashcards that Kelsey has learned to sight-read and a chart where she can add stickers each time she completes a goal. The Bryans have a copy machine, which churns out duplicates of homework assignments. A sheet Kelsey brought home from kindergarten shows wavering lines where she correctly added the fourth side to a square and completed a triangle.

"We did that assignment together 10 times last week so she would be ready for school," Bryan said.

After twirling through the living room with her copper-colored curls bouncing against her cheeks, Kelsey crouches and begins lining up plastic Disney characters on the floor. She emits happy shouts as she works.

"We know we're lucky that we can do as much as we can for Kelsey," said Bryan, whose husband, Gregory, is a physician. "But we also know there are so many other families out there that just don't have the resources. I would love to see them get what they need."

Jan Crandy, who with her late husband, Allen, founded Las Vegas-based Families for Effective Treatment of Autism, said she wishes every child could have the kind of supportive, organized home therapy that Kelsey receives. Crandy, whose 7-year-old daughter, Megan, is autistic, said she frequently hears from parents who are overwhelmed -- financially and emotionally -- by the demands of their autistic children.

"It's tough road," Crandy said. "I have no doubt that if we didn't fight for every small gain my daughter would be in an institution instead of a regular first-grade classroom."

Megan's gains required the entire family's help. Her 21-year-old brother, Jon Paul, transferred to a community college near home after their father was killed by a tornado in Salt Lake City in 1999. Jon Paul also tutors Kelsey and is considering a career as a therapist.

The thousands of people moving to Nevada each month, coupled with the rise in autism nationwide, almost guarantee that more families are going to need help, Crandy said.

"This bill would be a very small step in the right direction," Crandy said. "We need to be able to tell people there's help out there, and then give them some kind of road map to find it."

Crandy praised the school district, which she said has improved significantly since a few years ago when families filed complaints about the quality of school services. The district hired psychologist Pegeen Cronin of the UCLA clinic to serve as a consultant.

But Crandy said that money would have been better spent toward hiring a permanent staff member. "We're throwing away hundreds of thousands of dollars a year bringing in people from out of state. Just think of the time and money it would save people if they didn't have to drive to California to get help."

Susan D'Aniello, assistant director of the district's autism programs, said she supports the creation of a state commission and the establishment of two resource centers.

"We've come a long way, but we need to coordinate our efforts," D'Aniello said. "Collaboration on the part of teachers, parents and outside therapists is critical to the child's success."

But there's little that the schools can do if a child hasn't received adequate early intervention, said Dr. Johanna Fricke, University of Nevada School of Medicine associate professor who specializes in pediatric developmental disorders. When people express reservation about the $700,000 price tag for the resource centers, Fricke says she asks them whether they would spend the same amount to save a child with leukemia.

Diane Taylor said she's determined to reach her autistic daughter, Jamie, who turns 4 on the Fourth of July. Jamie, who was diagnosed a year and a half ago, is nonverbal and relies on picture flashcards to communicate. Taylor, who was recently laid off from her food-service job at a casino, said she and her husband work double shifts to pay for Jamie's therapy. The first tutor arrives at 7 a.m. for the first eight one-hour sessions.

"I worry that I'm not doing enough for Jamie or that I'm making mistakes that will cost her later," Taylor said. "It would be great to have someone around to say, 'Hey, you're on the right track.' "

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