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.