Rise in autism cases burden disabled centers' shrinking budgets

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http://www.bayarea.com/mld/cctimes/living/health/5557318.htm

Posted on Fri, Apr. 04, 2003
Rise in autism cases burden disabled centers' shrinking budgets

SACRAMENTO BEE
 

When UC Davis researchers recently launched the first major study to examine possible genetic and environmental factors affecting children with autism, they knew where to start.

Children are being recruited at California's 21 regional centers for the developmentally disabled, the nonprofit sites that link families with available services and provide the framework for treatment.

But the centers, which depend largely on state funding that was reduced by $52 million last year, also are ailing. Each is running a budget deficit, said Cliff Allenby, director of the state Department of Developmental Services.

Caseloads are rising and expected to surpass 180,000 statewide this year, including 10 new cases of autism each day, and some centers are facing the threat of closure.

No center is swimming in as much red ink as the Alta California Regional Center, which serves about 12,500 clients in Sacramento and nine surrounding counties.

Two years after it was placed on probation by the state because of "erratic and very inaccurate" budget projections, the center has a new $17.1 million shortfall, said Alta spokesman Robert Biggar.

By comparison, the Regional Center of Orange County, which serves 500 more clients, has a $2 million deficit.

Alta's director, James Huyck, declined to be interviewed. But Biggar said the center has hired a new chief financial officer and is no longer on probation.

"There is a possibility we could run out of cash, but we have been told (by the state) that our deficit and those of the other centers will be covered," Biggar said.

Allenby cautioned, however, that the Legislature must first appropriate the money. But with the state facing a record budget shortfall of more than $26 billion, and partisan paralysis setting in, there's been no indication lawmakers are prepared to act.

"If they don't, they will have to close their doors," Allenby said.

Assemblyman Dario Frommer, chairman of the Assembly Health Committee, said lawmakers are aware of the centers' plight but are hamstrung by the state budget crisis.

"We're trying to look at ways that they can access money or get a loan from the state to cover them for a short ... time," Frommer said.

Born three decades ago out of the landmark Lanterman Act, the centers link people with developmental disabilities with programs that provide housing, jobs, transportation and other services.

To enable families to remain together, the act established the right of Californians with developmental disabilities to receive "treatment and habilitation services."

But increases in caseloads, including a nearly threefold hike in autism cases from 1987 to 1998, have overwhelmed the system, as have the costs of treating patients because of technological advances.

In 1987, there were fewer than 3,000 diagnosed cases of autism in California, said Rick Rollens, a board member of the Autism Society of America.

Last year alone, there were 3,600 new cases, said Rollens, a former state Senate staff member who became an advocate after his son was diagnosed with the ailment.

Parents often describe normally developing infants who inexplicably begin to deteriorate in the second year of life.

Language is impaired; many cannot speak. Social interaction is limited. Children make little or no eye contact and do not engage with playmates.

These children require increased medical care, specialized education and constant, usually lifelong, supervision.

Estimates of $2 million for each autistic child's lifetime care do not include lost wages of the child or family members.

Frommer, D-Los Angeles, has introduced AB 236 to create a parent advocate within the Department of Health Services to assist families with treatment, public and private health care, education and social services.

"The regional centers do an excellent job but they are overburdened," Frommer said. "You really need someone who can give parents direction -- tell them, here's what you need to do, here's the community services available."

The UC Davis study, launched in February, is the first major case-control study to examine genetic and environmental factors that may affect the development of autism, mental retardation and developmental delay in children.

The $10 million study is funded by grants from the National Institute of Environmental Health Sciences and the Medical Investigation of Neurodevelopmental Disorders Institute at UC Davis, and should not be affected by the regional centers' money troubles.

Parents of children who recently have become eligible to receive services from regional centers are getting information on how their children can join the study.

Up to 2,000 children ages 2 to 5 will be recruited over the next three years as newly diagnosed youngsters enter the system. A broad array of external and physiologic factors, including exposure to chemicals used in industrial processes and consumer products, will be compared among three groups.

"It's clear that genes play a role in autism and developmental delay, but evidence suggests that the environment is also an important factor," said Irva Hertz-Picciotto, a professor of epidemiology and preventive medicine at UC Davis School of Medicine and Medical Center, who is leading the study.

 
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