Activists for Disabled Charge Betrayal

Gov. Arnold Schwarzenegger, the celebrity ambassador for Special Olympics and a passionate advocate for people with autism, mental retardation, cerebral palsy and other developmental disabilities, suddenly has found himself under attack from those whose dignity and rights he has championed.

At the center of this reversal is the new governor’s desire to save money by repealing a pioneering law signed by then-Gov. Ronald Reagan that guarantees services to the disabled.

The Lanterman Developmental Disabilities Services Act obligates the state to provide about 200,000 residents with “treatment and habilitation” services. Those who cannot fully care for themselves receive help getting fed, dressed, bathed and attended to in their homes by specially trained caregivers. Also guaranteed are medical treatment and such services as transportation and job training sufficient to allow disabled people to become productive.

The law was enacted in 1969 as a compassionate and less expensive alternative to traditional care at state hospitals where, experts said, disabled people had been warehoused in ghoulish environments. The program accepts all qualified applicants, regardless of age, income or disability, at no cost to the recipient.

But the program is among the fastest-growing in state government and has become increasingly expensive as caseloads have soared and the cost of services have spiraled upward dramatically.

For years, critics, including Elizabeth Hill, the nonpartisan budget analyst for the Legislature, have recommended reductions in costs, including requiring families of recipients to make co-payments for services.

Within days of taking the oath of office Nov. 17, Schwarzenegger proposed as part of his fiscal recovery plan for California that nonmedical services, such as respite care, in-home care and art and music therapies, be indefinitely suspended. He also called for freezing future enrollments and establishing a waiting list for new applicants.

During a nationally televised interview Tuesday, Schwarzenegger was asked about the proposed cuts by CNN’s Judy Woodruff, who noted that “Some of those programs [are] presumably supported by your own family.” (Schwarzenegger is married to Maria Shriver, a member of the Kennedy family) “You’ve been involved as a spokesman for the Special Olympics.”

“First of all,” the governor said, “no final decisions have been made. But one thing I can tell you, that it’s very difficult to make any cuts because all of those programs are, you know, important to those people.... But the fact of the matter is that we have no money.”

Shriver also referred to the proposals during a luncheon speech Tuesday in Sacramento:

Schwarzenegger “wants to get these programs and services funded again when we have the money. He has worked for the disabled and for children his entire life, and this is something people need to understand about him. His heart is in the right place.”

Advocates for the disabled are taking no chances and have mobilized to defend the program.

When Schwarzenegger announced the proposed cuts last month, “the shock wave spread across the state,” said Marty Omoto, legislative director of the United Cerebral Palsy Assns. “The general feeling is not just of panic but of outrage.”

The news flashed to parents, other family members, advocates and support organizations, who form a loosely knit but highly effective volunteer lobbying coalition. Today, demonstrators from throughout the state are scheduled to protest at the Capitol. A similar rally last spring against budget cuts recommended by then-Gov. Gray Davis turned out a couple of thousand participants. The cuts were eventually rejected.

Diane Anand, director of the Frank Lanterman Regional Center in Los Angeles, which provides services to about 6,000 developmentally disabled people each year, said many of her clients and their families feel betrayed by their Special Olympics hero. “There’s a sense of abandonment,” she said.

“I didn’t feel he would do something like this to the disabled,” said Cindy Venuto of Big Bear, single mother of a severely disabled child. La’Rissa, 17, uses a wheelchair, cannot talk, is incontinent and is unable to bathe, dress or get into bed without help. She also suffers from seizures and has had many surgeries.

Venuto, who works part-time as a Web page designer, said she long had been impressed by Schwarzenegger’s advocacy for the disabled.

Venuto said she is sad that she voted for Schwarzenegger. She said she understood that painful budget reductions must occur but believes that Schwarzenegger made a big mistake when he targeted programs for the disabled.

“With all the wonderful things he has been doing, I’m truly shocked.... These are devastating cuts,” she said.

Venuto and others said they are particularly troubled that what the administration calls “noncore cuts would wipe out respite care -- a program that hires a companion to care for the disabled person, usually a child, so that parents can temporarily escape from the stress of caring for the family member round the clock.

“Once in a while, you want to go to a movie or out to dinner. You want a respite to refresh yourself, so you can come back and care for her with some more” gusto, she said.

Art Bolton, who as a legislative staffer helped write the law that carries the name of the late conservative Assemblyman Frank Lanterman (R-La Canada), argued that “these programs are key to survival. These services are not really optional. They are not frosting on the cake.”

Bolton said he believed that the proposal may have been written by budget cutters at the state Department of Finance and that the governor himself “had never read it.”

A spokesman for Schwarzenegger said he did not know whether the governor had read documents about the cuts.

In defense of the reductions, administration officials said the governor found them deeply painful but necessary as part of an overall strategy to restore financial stability to a state where spending has outrun income by billions of dollars.

Spokesman Vince Sollitto said Schwarzenegger intends to get control of costs and can do so without dropping any current recipients by capping future enrollments at current levels.

“The governor is not cutting the program, he is trying to cap it,” Sollitto said. “If we don’t put the state back on sound financial footing, we won’t be able to provide services to anyone.”

But Senate President Pro Tem John L. Burton (D-San Francisco), one of two lawmakers still in the Legislature who voted 34 years ago for the Lanterman bill, said lawmakers are in no mood to approve the governor’s budget cuts.

“We aren’t going to mess with it. We just aren’t going to vote for it,” said Burton, a frequent defender of aged, blind and disabled Californians. He said he found it unacceptable that applicants would have to wait until an existing recipient died before they could get services.

Administration officials contend that the explosive growth in caseloads, averaging about 5% a year to the current level of about 185,000 individuals, coupled with costs that have increased between 11% and 19% a year, cannot be sustained, especially in the current fiscal crisis.

Administration figures indicate that costs of Lanterman Act programs have increased from about $1.4 billion in 1998-99 to nearly $2.3 billion. These costs exclude about 3,000 developmentally disabled who are institutionalized, usually because their disabilities are so severe that they cannot be cared for in community settings.

The caseload is projected to reach almost 200,000 next year, which would cost nearly $3 billion in the next fiscal year, officials estimate. The governor’s proposal would reduce costs by about $260 million during the next 18 months.

Cliff Allenby, the director of developmental services for the last five years and a Capitol veteran who has served under six governors, noted that various cost-cutting plans have been advanced over the years but were unable to stifle growth.

Allenby said he believed the new administration’s officials “did as good a job as they could” in trying to make thoughtful cuts in the short period they have been in office.

In an interview last week, Allenby said he could not defend the cuts. Under questioning, he said he would have no answer if a legislator or mother asked him what alternatives would be available to a disabled newborn who had been denied services and added to a waiting list.

“That presents a problem,” he told a reporter. “I can’t tell you any. I don’t know.”

Anand, director of the Lanterman center, said the prospect of denying services to eligible newborns was “unconscionable.” But she also said costs must be reduced or the entire program would perish.

Omoto, of the cerebral palsy associations, warned against what administration officials have characterized as a suspension of entitlements. He said the suspensions are indefinite and probably would be made permanent.

“We think there is no compromise,” Omoto said.