SACRAMENTO
- 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.