California cuts funding for respite care for disabled children

From the San Jose Mercury News:

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."