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August 5, 2015

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State Budget:

Most vulnerable await budget cuts with trepidation

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Leila Navidi

Christina Sablan, who lost the ability to speak after a neurological infection as a baby, celebrates her 29th birthday at her apartment with family January 18, 2011. With the help of a state program called Residential Support Services, Christina lives in her own apartment with supervision.

State of the State

Christina Sablan wears a crown to celebrate her 29th birthday at her apartment with family January 18, 2011. With the help of a state program called Residential Support Services, Christina, who lost the ability to speak after a neurological infection as a baby, lives in her own apartment with supervision. Launch slideshow »
Brian Sandoval

Brian Sandoval

The budget cuts Gov. Brian Sandoval unveils Monday will hit different Nevadans in different ways, but perhaps none more than parents who have children with special needs. As they have repeatedly cut the budget in recent years, state leaders say they have spared services for the most vulnerable Nevadans.

Yet some families say they have been affected and fear what additional cuts could bring.

Christina Sablan, 29, is bright, alert and feisty, but a neurological infection as an infant left her unable to speak. She uses sign language and writing to communicate.

She and her mother, Julie Olvera, have an almost psychic connection, which was on display at Christina’s birthday party last week. Each will give the other a look and both know what’s up. “I can nod my head, and she’ll know what I want,” Olvera says.

As the Sun reported two years ago, Christina’s adulthood had taken her through a dozen unhappy group homes with staff and other housemates who couldn’t communicate with her; caregivers wound up piling one medication on top of another to deal with Christina’s perceived social problems.

The low point was a group home where she was abused.

With the help of a state program called Residential Support Services, Christina moved into her own apartment, although with close supervision. She immediately made progress toward becoming more independent. She works at Transition Services in Chinatown.

The state tried to take the apartment away during earlier rounds of budget cuts, and the threat of eviction and a move back into a group home is a possibility she fears, Olvera says.

“Her quality of life will go down the tubes,” Olvera says.

Although her current situation has been promising, it’s not ideal. The state pays a private vendor $18.86 per hour to help supervise Christina. The vendor then hires people for something considerably less to look after her.

Not surprisingly, the vendor has high turnover; Christina’s family has seen eight or 10 attendants come and go over about three years.

•••

Kiara Estill of Henderson has a 15-year-old daughter, Destiny, who has schizoaffective disorder, Asperger’s syndrome and generalized anxiety disorder.

Although a fine student at Innovations International Charter School of Nevada, especially in math and sciences, she has significant social challenges and is prone to panic attacks.

With the help of Medicaid, the state-federal program for the poor, blind and disabled, she sees a pyscho-social rehabilitative worker three times a week, while also seeing a therapist and a psychiatrist. Estill says that with the help of the therapy and medication, her daughter has made significant progress. She regressed, however, in August, when Medicaid reduced her therapy sessions from three times a week to once.

This cost-cutting measure is not surprising: Nevada had one of the stingiest Medicaid programs in the country before a spike in enrollment because the recession forced policymakers to look for savings.

Destiny suffered anxiety and panic attacks, which led to what Estill calls “meltdowns” — crying and screaming uncontrollably that made leaving the house impossible.

“The rehab worker had made it safe for her to go out, and it was like someone pulled the rug out from under her,” Estill says.

Estill protested to state workers, who restored Destiny to three days of therapy per week and she is back on track.

But Estill lives in fear of a new round of cuts. “Oh, my God, yes. They’re talking about psychological services that directly affect my daughter. I’m a single mother, and if they cut those things, I couldn’t provide those things.”

Estill believes Destiny can eventually be independent, which would translate into long-term savings for taxpayers. But not without significant treatment first.

•••

Diane Lombardo tells a similar tale and shares a similar fear for her son Dean, 19, who is autistic.

After school, he attends Carpe Diem for what’s called applied behavioral analysis therapy, the leading treatment for autism. About two years ago, Desert Regional Center, from which Dean receives his services via Medicaid, cut him off because of Medicaid cuts, with almost no notice.

Dean regressed.

Diane Lombardo had always awakened in the middle of the night to check on Dean, and this time, he was gone. She called police, who said they had a “John Doe” at Valley Hospital.

He had crossed six lanes of traffic on Decatur Boulevard before being picked up by police, who took him to Valley.

When Lombardo arrived, Dean was restrained with an IV in his arm and a fever. He’d had a panic attack.

She fought and had his therapy restored. But she’s anxious about a new round of cuts.

“It’s changed his quality of life. His services are crucial for his development. Without them, he’ll never reach his full potential.”

Dean’s regression when he wasn’t getting treatment was palpable, Lombardo says. “When he lost services, he lost control. And it couldn’t be explained to him. You can’t reason about this. Your services are gone. Well, why? Where did they go? It can’t be explained to him. The poor guy didn’t know how to handle it,” she says.

Lombardo notes that society didn’t know as much about autism or properly diagnose it when Dean was a child. Although he received help at school, he should have had near round-the-clock therapy. Instead, he spent time on waiting lists.

His family hopes through the therapy and an assistive device, his world can be broadened. “We understand what he wants and needs, but we want the world to understand, so that his life isn’t this narrow dead end.”

Despite the progress, he has a long way to go in developing his independence. He still needs help dressing and bathing, for instance.

Through therapy, however, he’s developed coping skills and some patience. Because he’s technically an adult, Lombardo fears he’ll start to lose services.

“When they get older, there’s a thought the services can go away as if the disability goes away. I wish it were true.”

Lombardo is afraid of him not being able to take care of himself when she’s gone. “This is what keeps a parent awake at night. You want to make him independent. And you need all the help you can get to do that.”

She waits anxiously to learn about budget cuts, thinking of other parents as much as herself.

“I want to spare parents what I’ve endured. I learned the hard way. Many years ago, people didn’t know what the word autism meant. Now Dean is a young man, and my greatest teacher. He’s taught me humility and so much else, and I’m a better person because of Dean.”

•••

Phil and Rachelle Reynolds have two boys with autism, Eli, 4, and Sebastian, 6.

Although Phil, a bartender at the Cosmopolitan, has good insurance through the Culinary Union, autism treatment isn’t covered, and health plans such as the Culinary’s were exempted when the 2009 Legislature passed a law that mandated coverage.

The boys need lots of therapy if they are to become independent. This includes speech, behavior and occupational therapy.

For a while the Reynolds drained their savings to pay for treatment. When that was gone they turned to Medicaid.

Since the Sun first interviewed Rachelle Reynolds two years ago, cuts in Medicaid led to reduced treatment sessions and lower reimbursement rates for the boys’ providers, so Rachelle Reynolds, a savvy and protective mother with an eye out for the best treatment and service options, dropped Medicaid.

She turned to the state-funded Autism Treatment Assistance Program, or ATAP. She applied for a scholarship, and the boys each receive $1,550 per month for treatment. Eli receives extra treatment at Touro University.

He’s in preschool and is “doing amazing,” Rachelle Reynolds says.

Sebastian, meanwhile, is coming along, but has “lots more to accomplish.”

She says she lives in fear of cuts to the state autism program.

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