Legislators look at changes to services for developmentally disabled

California is facing a “tsunami” of new autism cases, a Senate consultant told the Assembly Committee of Human Services on Wednesday.

Committee chairman Jim Beall, D-San Jose, called the hearing to address numerous issues around the Lanterman Act. With this pair of landmark laws passed in the 1960s and ’70s, California became the only state in the nation that guarantees services to developmentally disabled people. As the state deals with a tightening budget, an aging patient population and rising rates of autism, state legislators are looking at ways to maintain these services into the future.

The act was named for last Republican Assemblyman Frank Lanterman, who carried the bill in cooperation with famed Democratic speaker Jesse Unruh. The Lanterman Mental Retardation Act, passed in 1969, guaranteed state services to the mentally handicapped. In 1971, the act was amended to include people with autism. In 1977, the Lanterman Developmental Disabilities Act extended this guarantee to people with many other developmental disabilities.

While the state has maintained these guaranteed services for decades, “the actual services have been getting less and less,” said Assemblywoman Noreen Evans, D-Santa Rosa.

“There’s a lot of worry out the in the advocacy community,” added Tony Anderson, executive director of The Arc of California, a disability advocacy organization. Over the last several years, he said, waiting lists have grown and eligibility requirements have been tightened.

The California Department of Developmental Services is caught in the midst of several difficult demographic trends. The total number of people they serve has grown steadily, from just over 120,000 in 1995 to over 200,000 in 2005.
But it is a group that makes up less than 20 percent of this population that is causing much of the concern. Lou Vismara, a consultant to Senate Pro Tem Don Perata, D-Oakland, said the state is facing a “veritable tsunami” of new autism cases.

“Keep in mind we’re adding 12 new children a day, seven days a week,” Vismara said. Each of these children could need between $5 million and $20 million worth of care in their lifetimes, he said.

Schools, he added, are also feeling the strain. Vismara said he knew of one small school district that spent $625,000 on litigation alone dealing with the families of 40 students who had serious autism spectrum disorders.

According to the department’s 2003 report “Autism Spectrum Disorders,” the number of autistic patients they serve has grown from around 2,800 in 1987 to 10,000 in 1998, then doubled to 20,000 in 2002. This population is set to double again within another year or two; as of October 1, DDS has a caseload of 35,716 people with autism.

“Eighty-four percent of the entire population of persons with autism was under 25 years of age, with 70 percent of the population under 14 years old,” the report found, meaning that many if not most of these patients will be under state care for decades to come.

Much of this change has to do with better, and earlier, diagnoses, said Julia Mullen, deputy director of the Community and Support division at DDS: “Were bringing people into the system at a younger age. California has a really good early intervention program.”

But this growing caseload is one major reason DDS has needed to implement
cost-control measures in recent years. Many of these changes went into place during the budget crisis of 2002 and 2003. Many also have been extended ever since, she said. Families making above 400 percent of the poverty level must now help pay for services, case managers have taken on higher case loads, and eligibility requirements have been standardized across the state.

While the autistic population tends to be quite young, DDS is dealing with an aging client population for many other developmental disorders, including many people who have been under state care since shortly after the act first passed.
Meanwhile, DDS has spent recent years trying to increase the amount of community placement it does, moving high-functioning consumers out of state institutions and more into mainstream society. According to some critics, the state has been moving from “mainstreaming” only the highest-functioning people to trying to take some people out of state institutions against their and their family’s wills.

The combination of these two factors has many parents worried, Assemblywoman Evans said. “They’re facing their own mortality and they’re worried about what’s going to happen to their kids,” she said.

Evans has carried several pieces of legislation on the Lanterman Act, including bills to increase oversight of local facilities and making sure families have the right to tape eligibility hearings.

She also has a high-profile community-placement dispute in her district. The family of a man named Roy Whitley, who has spent over 20 years in state institutions with severe disabilities, said the North Bay Regional Center tried to move him out against his will. Earlier this month, his sister and legal caretaker, Virginia Maldonado, won an appeal against the center in what may prove to be a landmark case.

DDS’s Mullen said that there are numerous protocols they must follow in community placements, as laid out by several federal and state course cases.

“What all of these cases are based on is the idea that the individual has the right to live in the least restrictive environment,” Mullen said.
However, Arc’s Anderson said that his organization has seen a worrying lack of follow through in many of these cases.

“These people have just sort of disappeared,” he said. “We don’t know where they are.”

He added that there is another growing caseload that many people may be failing to anticipate: growing rates of fetal alcohol syndrome. This is a disorder caused when pregnant women drink during certain phases of pregnancy. It’s typically characterized by mental retardation and poor impulse control. While FAS is stereotypically an affliction of the lower classes, Anderson said that many of the new cases are happening among middle-class women are largely the result of a lack of education on the issue.