More quick facts on Autism

Taken from 9/18/09 Sacramento Bee article by Louis A. Vismara:

- Autism remains the fastest-growing developmental disability in California and the nation, diagnosed in one of every 150 children.

- If the trend continues, it's estimated that the state's regional centers may face demands for services from as many as 70,000 people of all ages with autism by 2012.

- About 90 percent of autistic adults are unemployed. In part, that's because of lack of opportunity and training.

Budget woes will leave families without respite care

By Troy Anderson, Contra Costa Times Staff Writer
Posted: 09/20/2009

With a 2-year-old son suffering from a genetic disorder that leaves him vulnerable to accidents, Tarzana residents Lance and Samantha Reiss rely heavily on a state-funded program that helps them care for the boy while raising two other children.

Until a month ago, the Reiss family received 130 hours a month of state-funded respite care under a program that helps families raise disabled children.

But after the state's latest round of budget cuts, the family's respite care hours were reduced to 50 and are expected to be eliminated altogether by Oct. 14.

Jake Reiss has Apert syndrome, a genetic disorder that causes malformed skulls, hands and feet. The sutures in his skull were closed when he was born, requiring head surgery, and he was also born with fused fingers and webbing between his toes.

Without the respite caregiver, Samantha said her son may not get the help he needs to attend preschool safely.

"If he were to hit his head hard, it could cause some damage," said Samantha, 36. "That's what we're receiving respite care for, an extra set of hands to make sure he's always safe."

The Reisses are among thousands of families with developmentally disabled children who are beginning to feel the pain of the state budget cuts. Without these services, families might need to place their children in institutions where care is more expensive and inadequate, disability advocates say.

Nancy Lungren, spokeswoman for the state Department of Developmental Services, said $384 million was cut from her department's $4.7 billion budget. The cuts were made after a series of community meetings.

"Even though there are more and more people with developmental disabilities ... we can't serve everybody with scarce resources," she said. "So we had to focus on the most disabled with the greatest needs (and) we had to make these really difficult choices."

But some advocates say the cuts affecting the disabled community were made in many different state agencies, adding up to a much larger hit.

Jordan Lindsey, director of policy at the California Association for Health Care Services at Home, estimates the recent budget actions have cut $3.5 billion in a variety of services to people with disabilities.

"They are being cut 10 percent here, 10percent there, and people may not understand if you add it all together all of a sudden you are taking away a huge portion of the individual services that allow them to live in the community with a meaningful, productive life," Lindsey said.

Aaron McLear, spokesman for Gov. Arnold Schwarzenegger, disputes that estimate, saying cuts in services to people with disabilities total only $1.5 billion.

The cuts, he said, were necessary to help the state overcome massive budget problems.
"We had a huge shortfall this year - about a $60 billion deficit over the course of a year-and-a-half," McLear said. "We solved some of it through budget cuts and some through temporary tax increases.

"We had more tax increases on the ballot, but voters rejected that. We can only spend money we have and just like every California business and family, we had to cut back."

The cuts come as the number of people served by DDS has grown from 146,000 in 1997 to more than 240,000 today.

Under the Lanterman Act, DDS is responsible for ensuring people with developmental disabilities receive the services they need to live independent and productive lives. These disabilities include mental retardation, cerebral palsy, epilepsy, autism and related conditions.

The services are provided by four state-operated development centers and two community facilities, and under contract through a network of 21 nonprofit regional centers.

Lindsey said the families that rely on these services are "terrified now" as the cuts go into effect.
"At one time in California, we made it a priority to ensure people with developmental disabilities were going to receive the necessary services so they would no longer be in fear of being forced into an institution, or being forgotten in the community," Lindsey said.

"Although that was at one time a priority, we are now leaving those individuals in the vulnerable position of fending for themselves."

Risa Berger, a 43-year-old Winnetka resident who has multiple sclerosis, relies on respite care to help herself and her 8-year-old son, Samuel, who has cerebral palsy.

The respite caregiver gives her a break and helps her bathe her son, take him to his soccer games, family dinners and other activities.

"When you spend your whole life working, paying taxes and doing what you are supposed to do, and then when you need something (these cuts) are like someone coming up and slicing your Achilles' heel with a razor blade," Berger said.

Lindsey said his association is especially concerned about the cuts in respite care because the service allows many people with disabilities to live independently.

Under the new rules, families can receive no more than 21 days of out-of-home respite services in a year, or 90 hours of in-home respite services in a three-month period.

"You can't have unlimited respite care for everyone," Lungren said.
"We had to cut there as well as other places."

But under certain circumstances where respite care is "absolutely necessary," Lungren said parents can appeal any decision by a regional center restricting care.

Lindsey said the association is supporting legislation by Assemblyman Jared Huffman, D-San Rafael, that would lift the cap on respite care and replace it with a percentage reduction, spreading out the impact more equitably. The bill did not pass last session, but Huffman intends to reintroduce it next session.

"They are cutting from the places where people need help the most," Samantha Reiss said. "We're not desperate, but I could never afford all of the services he gets. ... I can't even imagine what is happening to people who are worse off than we are."

How one agency's cuts point to California's bleak future

By Chris O'Brien
Mercury News Columnist

I am feeling more bleak than ever about the future of my adopted home state.

Years of budget lunacy in Sacramento culminated in a series of catastrophic cuts made this summer. It's unlikely that any part of state government escaped the hatchet. I'll leave it to historians to sort out just how badly we were failed by our governor and legislators.

But it's all too easy to forget, amid all the talks of billions cut here and billions cut there, the impact of each cut, and how those cuts may eventually make our dire budget situation even worse. This situation did more than just demonstrate the madness of the short-term thinking that drove the cuts. It provided a stark example of how, by choosing to focus on cutting rather than investing, we, the people and the politicians, could end up paying more in the long run to deal with our problems.

In this case, I'm talking about the brutal reductions made to early intervention services for at-risk and developmentally delayed children under the age of 3.

I happen to know a fair bit about this subject because my son received these state-funded services between the ages of 18 months and 3 years. Liam is now 6 years old and has been diagnosed as high-functioning autistic. Thanks to those early intervention services, he's now in first grade at a mainstream elementary school.

Understanding the impact of these cuts is difficult because the state's system for providing these services is complex. But let me walk you through the maze.

At the top is the California Health and Human Services Agency. Under the CHHS is the Department of Developmental Services. The DDS doles out money to 21 nonprofit regional centers that serve 244,000 adults and children with various degrees of disabilities.
Back in 2003, when Liam was found to have speech and other developmental delays, we were referred to the Regional Center of the East Bay. Through the regional center, Liam received speech and occupational therapy that put him on the path to closing the development gap with his peers.

But it's just such services that are now being cut. And because I know how invaluable they are, my heart breaks for all the families that won't receive them.

The folks who run DDS and an advisory task force have been heroically trying to make the best of a horrific situation. The agency projected that the number of folks it would serve this year would increase by 12,800. But rather than getting a budget increase to cover that growth, which DDS estimated would run about $384 million, the agency got a bump of only $22 million to its $4.7 billion budget, so it needs to find savings to make up the difference. The agency convened a large number of stakeholders to try to find the most humane solution.

"How can we do the least harm?" said Julia Mullen, deputy director of the community services and support division at DDS. Perhaps we need to adopt that phrase as our state motto.
The political insistence on cutting put the department in the impossible position of trying to decide how to split the baby. For which group of people with autism, epilepsy or cerebral palsy do you reduce services? The solution was painful. The department focused on three categories of kids it serves. The first are kids who are at risk, perhaps because of a problem at birth, but have not shown a delay. California was one of only six states that served these kids. But no more.
The second category are kids who come to the regional centers after age 2 and are less than 50 percent delayed in one area, such as speech.

Both groups of kids will no longer receive direct services such as speech, occupational or physical therapy.

Fortunately, the agency managed to shift some money around to create a new prevention program for these kids. The new program won't provide services, but the kids will be assigned a case manager to watch them closely to see if they're getting worse, and if so, pull them into the system.

"We wanted to have a safety net," Mullen said. "To make sure they did not fall through the cracks."

This carefully thought-out plan has been further complicated by our knife-wielding governor's decision to make a last-minute line-item cut that sliced another $50 million off the DDS budget. The agency is still weighing how to take that into account if it withstands a legal challenge.
From a moral perspective, the choice forced on the agency is indefensible. Rather than taking aggressive preventive action, the department must now gamble with these kids' lives and hope as few as possible develop more severe delays.

From a treatment perspective, you'd be hard pressed to find any expert who would advocate a "let's see what happens" approach. Mullen said the agency is going to be extremely vigilant when it comes to watching these kids for any signs they're regressing.

But beyond all that, I'm troubled by the potential economics. Researchers are clear that early and preventive treatment saves money down the road. Conversely, by waiting, fewer kids will come into the system but they will likely have more severe issues, and thus will likely cost more to treat.

"The state is essentially disinvesting in young children," said Steven Barnett, co-director of the National Institute for Early Education Research at Rutgers University. "And that will result in more expenditures later on."

So this is the economic bargain our governor and Legislature have asked us to make: Let's hope that the higher expense of waiting to treat fewer kids doesn't eat up all the money we're saving by cutting early intervention services.

I can't help but think what my family would have done had we been told that our son wouldn't be eligible because he was only 40 percent delayed. Because our insurance didn't cover such direct therapy, we probably would have borrowed thousands of dollars to pay for services out of pocket.

This is the grim choice the state will be forcing on to thousands of families. So let's be clear about one thing: These cuts are not really cuts. As a society, we will still end up with costs, directly or indirectly, down the road. These kids will go to schools, where they may require more services or support. Or they'll be less productive when they grow up and can't get jobs.

And in the end, this is only one of many such cuts enacted. Repeated over the billions of dollars sliced from the state budget, I wonder if the governor or any of our legislators know how much the cuts today will end up really costing tomorrow.

In truth, none of us knows. And that's what has made me doubtful that the Golden State will ever regain its luster.

Contact Chris O'Brien at (415) 298-0207 or cobrien@mercurynews.com. Follow him on Twitter at twitter.com/sjcobrien and read his blog posts at www.siliconbeat.com.