Autistic children in the cross hairs of state budget crisis

June 20, 2009 

An explosion of childhood autism and a shrinking state budget could be setting up the central San Joaquin Valley for health-care crisis when those children grow up.

The reason: If young autism patients don't get the help they need, they'll just need more help -- and costlier help -- later in life.

And it looks like thousands of children could fall through the cracks under proposals now on the table in Sacramento, health experts say.

"We're pretty scared right now," said Marion Karian, executive director of Exceptional Parents Unlimited, a Fresno nonprofit that serves children with special needs, including those with autism.

The agency helps 300 families of children with autism or autism-like symptoms in Early Start, the state's early intervention program for infants and toddlers who have developmental delays or at risk of having them.

The Exceptional Parents Unlimited early intervention program loses $200,000 a year that has to be offset by fund-raising, Karian said. Proposed state budget cuts to Early Start would increase that gap, she said.

Across the Valley and statewide, demand for autistic services is growing at epidemic rates, while money to pay for them is declining, agency directors said. The agencies received 3% less in state funds to operate this year.

And they stand to lose more.

Under proposed changes in eligibility and other state budget-tightening policies, as many as one out of five toddlers who need services could be turned away, they said.

The state says that children with the most severe form of autism will continue to receive care, but budget cuts will mean fewer infants and toddlers will be served.

"It's very, very difficult for everybody," said Julia Mullen, the California Department of Developmental Services deputy director of community services and supports division.

A growing problem

Of all the developmental disorders, those labeled as autism are increasing the fastest statewide. No one is sure why -- a combination of genes and environmental factors could be at play -- but the consensus is the upward trend will continue.

"We don't know quite what it is, so we don't know how to stop it. So it just keeps going up and up," said Robert Hendren, professor of psychiatry and executive director of the M.I.N.D. Institute at the University of California at Davis. The institute focuses on autism and related neurodevelopmental disorders.

Statewide the number of autism cases has grown faster than the combined number of cases of mental retardation, epilepsy and cerebral palsy. Autism increased more than 1,100% over two decades, while the number of people with developmental disabilities increased 136%, according to a report made public this year by the California Department of Developmental Services.

In June 2002, nonprofit groups tracked by the state helped 14,279 people with autism. By the end of 2007, the number had grown to 34,656.

State experts expect it to surpass 50,000 by this September and reach 70,000 in June 2012.

The Central Valley Regional Center, a nonprofit agency serving the disabled in Fresno and surrounding counties, saw autism cases increase to 1,041 in July 2007 from 388 in 2002.

And when Exceptional Parents Unlimited, the Fresno non-profit, opened in 1976, "We never saw children with autism in our early intervention program," said Karian, the executive director. "Now we see a lot."

The children often need speech, occupational and physical therapy, as well as intensive behavioral services. The earlier the children get the therapy, the better, Karian said.

Young children's brains have a plasticity that allows new connections in the brain to form more easily.

"Older children can make progress," said Amanda Adams, director of the Central California Autism Center at Fresno State, "but not the significant gains we see in young children."

Early therapy can help avoid expensive out-of-home care later, the experts say.

The costs for service increase as children age into adulthood. Autistic adults often need help to live independently, and rely on such programs as adult day-care, where they can continue learning skills of daily living. Services for an autistic person cost at least double those for individuals with other developmental disabilities, state experts say.

Early care pays off

Dylan Martinez didn't start talking until he was 2 1/2 years old. His parents, Stephanie and Jared Martinez, credit Exceptional Parents Unlimited with helping him learn.

"He's gone from babbling to four-word sentences," said Jared Martinez of Tollhouse.

Dylan, who qualified for Early Start programs, got help from a tutor provided by ACES, a Fresno autism agency, when he turned 3. Now, as a 4-year-old, he attends a regular preschool, his father said.

Without the early help, Jared Martinez said, "I don't know where he would be right now."

The family didn't have to pay out of pocket for the therapy, because the help was funded by the state. Californians with developmental disabilities are entitled to services under the 1969 Lanterman Act, which gives them the right to services that help them to live more independent lives.

Before the law, many people with developmental disabilities were institutionalized, said Nancy Lundgren, a spokeswoman the Department of Developmental Services.

The state charges parents for some services. For example, it requires financially able families to participate in sharing the cost of respite, day care and camping provided to their child.

Services for young children with autism are costly.

Applied behavioral analysis therapy to train the brain, for example, involves one-on-one interaction with a professional that can include sessions of 30 to 40 hours a week. The therapy costs between $36 and $50 an hour for those paying cash.

California requires that private insurance companies pay for medical services for children. Those services include speech and occupational therapy and psychotherapy for autism. But insurance companies don't pay for intensive behavioral therapy. Behavioral therapy is considered an educational service, not a medical treatment, said Charles Bacchi, interim president and CEO of the California Association of Health Plans.

To make it a covered expense would increase insurance premiums, he said.

An effort is under way to force insurance companies to cover behavioral therapy expenses, said Bryce Miler, contract manager at Center for Autism and Related Disorders, which has an office in Fresno.

Twelve states already have mandated it. "The movement is spreading," Miler said. But advocates are still pressing the issue in California.

Cuts on the way

For now, the state of California pays for the behavioral therapy. But agency directors say it's getting harder to provide it. The 3% rate cut by the state this year was retroactive to February.

The Department of Developmental Services must make another $234 million in cuts to help make up for a $24 billion state budget shortfall.

No qualified children now are being turned away for service, said Robert Riddick, executive director of the Central Valley Regional Center. But he acknowledged agencies that provide services are feeling a pinch.

"Our big worry is what's going to happen in the next few weeks," Riddick said. The regional center is one of 21 nonprofit corporations that receive funding through the state to coordinate services for children with developmental disabilities. The centers contract with outside agencies to provide services.

As early as this week, lawmakers will consider cost-saving plans proposed by the Department of Developmental Services in its budget.

A major issue is eligibility. Nonprofit agency directors and autism activists say the very young will be affected by a proposal to tighten eligibility for Early Start. The program provides early intervention services to children from birth to age 3 who have developmental delays or are at risk of having one. Risk factors include premature birth or low birth weight.

Riddick of the Central Valley Regional Center estimates that 15% to 20% of children would lose eligibility for services.

The state has tried to ease the transition, said Mullen of the Department of Developmental Services.

Her agency has asked autism organizations, consumer groups and other agency officials for budget-cutting ideas, and it has sought comments from parents.

Every attempt was made "to have the minimal impact possible on the infants and toddlers," Mullen said.

But she said the change in eligibility would mean "there will be fewer infants and toddlers served in our Early Start program."

Painful changes

The eligibility change is "clearly the most painful and controversial" of 15 proposals, said Rick Rollens, an autism activist from Sacramento.

Rollens has an 18-year-old son with the disorder and is a consultant and lobbyist for the Association of Regional Center Agencies in California.

Under the eligibility change, children between the ages of 24 and 36 months would need to have developmental delays of 33% in two categories -- cognitive, self-help, physical, communication or emotional -- or a 50% delay in one area, based on evaluation. Now, toddlers need to have a delay of 33% or greater determined in only one area, such as speech.

The proposal would hurt toddlers with milder forms of autism or those at risk for autism, Rollens said. "Many could lose the only service they will get," he said.

The Department of Developmental Services also is considering a proposal to limit Early Start services for some infants. Infants with severe disabilities would continue to receive full services. Those with mild symptoms would be be part of a prevention program, where they would be referred to other agencies, such as HeadStart, a national school readiness program.

"During these extraordinary times, doing our very best to maintain vital services is a high priority of the Department, Mullen said in an e-mail. "A Prevention Program would allow regional centers the flexibility to continue providing essential services to these infants, toddlers, and their families," she said.

The Early Start program is a target for cuts because the largest bulk of funding comes from the state, Rollens said.

Early Start costs were projected to be $400 million next fiscal year, Mullen said. The state gets about $50 million a year from the federal government for the program, and the state contributes the remaining $350,000.

"There will be fewer infants and toddlers served in our Early Start program," Mullen said. "But what we attempted to do was craft, very carefully craft, a way to have savings in our Early Start program and do the least harm."

Changing the Early Start eligibility would save about $13.4 million in the next fiscal year, according to department estimates. Another $2.1 million would be in savings to regional center operations.

'Helpless and hopeless'

For now, children like 28-month-old Dylan Guimond can still get the care they need.

His mother, Kelley Guimond of Clovis, said she began noticing developmental delays in Dylan by the time he was about 16 months old. Eventually he stopped making eye contact, stopped repeating words. His pediatrician advised her to wait to see whether he was just slow to develop, she said.

Dylan has not been diagnosed with autism, but warning signs are there.

About two months ago, Dylan began getting help at Exceptional Parents Unlimited. Dylan has learned so much at those sessions, Guimond said.

"I can't imagine where he'd be now if we weren't coming here," she said. "He says 'stop' and 'go' for piggyback rides at home now. He learned the word 'bubbles' here."

Soon, however, some children like Dylan could become ineligible for that type of service, Karian said.

Karian said she feels "kind of helpless and hopeless that whatever is going to happen is going to happen" to the developmental-services budget.

Exceptional Parents Unlimited won't stop serving children, however. The agency will have to step up fundraising efforts to make up for budget cuts, Karian said. "I can't see us not serving these children who are referred to us."

The reporter can be reached at banderson@fresnobee.com or (559) 441-6310.

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