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Parents of autistic children decry state’s long wait list for services

Olivia Espinoza repeatedly called out to her 8-year-old son, who paced the living room floor like a sentry on patrol.

He wouldn’t make eye contact and stayed fixated on his footsteps as the adults around him spoke of the challenges of raising an autistic child.

Irma Alvarado’s autistic son, 9-year-old Rojelio, tugged at a red necktie while the discussion unfolded.

The third mother at the informal gathering on Thursday said her severely

autistic child’s need for treatment and services is going unmet.

“It’s a huge desperation,” Maria Sosa said in Spanish of her 8-year-old son Jose’s situation. “Sometimes you don’t even know what to do anymore.”

Their sons are among 357 children on a wait list for help from the state’s Autism Treatment Assistance Program, which offers therapy to improve communication and behavior.

Autism spectrum disorders are a group of developmental disabilities that can cause significant social, communication and behavioral challenges, according to the Centers for Disease Control and Prevention.

Early treatment for autism is crucial, the mothers said. But the average time it takes to obtain services for children put on the wait list in January is 275 days, said Tina Gerber-Winn, deputy administrator for the state’s Aging and Disability Services Division.

The wait list backlog began when the program started in 2009, Gerber-Winn said last week. The program gets referrals from multiple sources, including families, schools and health care providers.

“It has slowly grown since people have become more aware,” she said.

At the end of January, the state’s autism treatment assistance program was serving 199 children, from those younger than a year up to 19. The state-funded program is closing an average of two cases per month because each case varies in therapy length. The average monthly cost per case in January was $1,233, but officials said that average changes, depending on how much therapy participants need.

However, the program receives an average of 16 new requests for services a month, Gerber-Winn said.

Once in the program, a target is set for a child’s improvement. A behavior analyst decides when the target has been met and closes a case, which sometimes can take years.

“We only have the ability to service so many cases,” said Gerber-Winn, adding that she understands families are upset because they’ve been waiting so long for services.

Jose Sosa was identified as autistic when he was 3 years old and has received little treatment. He got six months of speech therapy soon after he was diagnosed, his mother said. He still uses diapers and can’t speak in complete sentences.

Maria Sosa submitted the first application to the state’s autism program about three years ago but was later told her paperwork couldn’t be found in the system. It’s been a year since she submitted a second application, and her son has still not made it to the front of the line.

“He is not functional,” Maria Sosa said of Jose on Thursday night as she and the other mothers gathered at an east valley home to drink coffee and watch their children play. “He needs a lot of help. I know that all the children (on the wait list) need help, but my son really needs it.”

Jose needs to be watched at all times. He also won’t stay still and doesn’t recognize danger.

“If there’s fire in front of him, he’ll go up and grab it,” Sosa said.

She hopes state officials will heed her call for help before it’s too late for the therapy to make a difference for her son.

Children on the wait list are in desperate need of services but are languishing, said Barbara Buckley, executive director of the Legal Aid Center of Southern Nevada.

“It makes no sense,” she said last week. “We see the therapy makes a difference in their lives. … For them to sit on the waiting list when you know it can change their lives, it’s just a travesty.”

The issue is one of the highest priorities for the Legal Aid Center, Buckley said. She has been in communiation with Mike Willden, director of the Nevada Department of Health and Human Services, to see what can be done to speed up the process. They also plan to contact state lawmakers.

Lawsuits in Florida and Ohio directed the states to pay for applied behavior analysis treatment for autistic children under their Medicaid programs, Buckley said. Last fall, a federal appeals court upheld the order for Florida to offer the treatment under Medicaid.

“That’s an angle that we are looking at,” she said.

The Legal Aid Center’s goal is for children to receive services as soon as possible. The center will keep all of its options open, including litigation if necessary, Buckley said.

The Legal Aid Center became aware of the issue because it represents an autistic foster child who needed treatment.

“Because the cost of behavioral plans vary, it is necessary to balance the addition of new children to the program with the agency’s budgeted authority,” Gerber-Winn said.

For fiscal 2014, the program has a budget of $4.1 million. That increases to $7.7 million for fiscal 2015. Those budgets include $2.6 million added to help decrease the number of children on the wait list, Gerber-Winn said.

The additional funding will allow the program to increase services to 307 children by June and to 572 by June 2015, Gerber-Winn said. The program also has added seven new positions.

The funding “will allow the program to serve 50 percent of the current waiting list,” she said.

But mothers say time is passing and their children are losing their windows of opportunity.

“It’s not fair that our children are not getting the help,” said Olivia Espinoza, who leads a support group, Azul Blue, and has an autistic 8-year-old, Matthew Villalobos, who doesn’t speak and still uses a diaper. “My son is in the same situation. It’s sad not to have a solution.”

Reporter Yesenia Amaro can be reached at yamaro@reviewjournal.com or 702-383-0440.

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