Respite Care Offers Parents a Burden-Free Oasis of Time

Lustig is a regular contributor to Valley View

Think finding a good baby-sitter can be tough? Consider the dilemma of the parent of a child suffering from Down's syndrome, autism or cerebral palsy.

But Joseph M. Palazzola, a customer service representative in the men's sportswear industry, will take the job. So will teacher Patricia Morgan and Postal Service letter carrier Marva Golden. They'll even come recommended, and under the guidelines of the state Department of Developmental Services, it won't cost the parent a penny.

Palazzola, Morgan and Golden are three of about 200 full- and part-time state-funded "respite care workers" in the San Fernando, Santa Clarita and Antelope valleys. Depending on the seriousness of the disability, respite care services can be authorized to provide from 12 to 36 hours of care per month, regardless of the family's ability to pay.

'Tremendous Help'

"I could not do without it," said Jean Ginsberg of Arleta, who is allowed 36 hours of respite care per month for her two retarded daughters, Rachel, 18, and Dorothy, 17. "It's a tremendous help, allowing me to have a little time to myself. It's also good for them to be with somebody else. They look forward to it," she said.

"It's a birth-to-death child-care service if the child is eligible," explained Ann Baerwald, director of client services at the North Los Angeles Regional Center in Sepulveda. The program also serves children who fall into other high-risk categories, including drug babies and premature infants.

Palazzola, 42, a former Vietnam medic, prefers to think of himself as a big brother rather than a caretaker. "There's a lot of pleasure in it," Palazzola said of working with children and young adults, most on a long-term basis. "Seeing a person start a project they haven't done in the past, whether it's ordering food for themselves, making change correctly or watching them learn how to transfer from one bus to the next and get home again gives you a great feeling."

He thinks many of his charges don't get out enough, either because both parents work or the disabled child may be part of a larger family. "I'll put them in the car and we'll take off, maybe go to the park, the beach, take a long walk or just sit and talk sports. I try for a one-on-one relationship."

Morgan's full-time job as a teacher of developmentally disabled students in the Los Angeles Unified School District suits her for respite care work. Averaging 15 hours a week at night and on weekends, the 40-year-old said she does it because "I enjoy working with handicapped children; it's an excellent learning experience."

Marva Golden, 39, walks a neighborhood in Northridge all day delivering the mail. At night and on weekends, the certified nurse's aide works about 12 hours a week with small children suffering from Down's syndrome or cerebral palsy. "They're special kids," she said, "and they make me really appreciate coming home to my healthy 15-year-old son."

The state provides assistance through a network of 21 not-for-profit corporations established in 1966. The local regional center is one such corporation which, in turn, contracts with various other companies and corporations to provide suitable workers.

The regional center gets the majority of its workers through the Job Shop in Reseda, a company specializing in in-home care; the Jay Nolan Center, a not-for-profit corporation in Canyon Country specializing in dealing with the developmentally handicapped, and Accredited Nursing Services in Encino, which provides full- and part-time workers who are qualified as nurse's aides. All three draw on a large pool of people with a variety of backgrounds but with the common interest of helping developmentally disabled children.

1964 Study

Respite home child care, said the regional center's Baerwald, is the direct result of a 1964 study commissioned by the state that recommended helping families by setting up home care services at fixed locations. The regional center concept was born two years later.

"The whole idea is to give the parents some respite," said Ellyn Hayes of the Jay Nolan Center, who stresses the importance of keeping disabled children at home rather than institutionalizing them.

The Jay Nolan Center, which provides about 10,000 in-home care hours a month, also has a private sitter program for families who prefer someone they know to take care of the disabled child. "It can be a relative as long as it is not someone who lives in the same home, or a neighbor, a friend or anyone that the family trusts with their child. After filling out the required paper work, they are paid through us," Hayes said. (The center, which opened 10 years ago, was named after the autistic son of late actor Lloyd Nolan.)

Accredited Nursing Services splits its business between dealing with the geriatric population and providing respite care for regional center clients, said President Barry Berger. The Job Shop does a variety of temporary and permanent placement services in addition to working with various regional centers, including elderly care and visitation monitoring in court cases.

"We watch the handicapped, the retarded, the epileptic, the autistic, the quadriplegic, the paraplegic, combinations of two and three of these, so the parent can get away for a few hours a week and take care of their other siblings," explained The Job Shop owner, Newton Fletcher. "There is no difference in taking care of a mentally handicapped child. If it's a 14-year-old with the capacity of a 3-year-old, you take care of a 3-year-old."

Care for Anyone

Fletcher, who also has a regular baby-sitting service, said his motto is, "We'll take care of anybody from birth to death so long as it's legal, ethical and moral."

All three firms receive a pre-negotiated fee from the regional center, ranging from $7.46 to $8.38 for each hour of respite care work. In turn, the sitter receives from $4.50 to $5.50 depending on the firm; the rest goes toward operating expenses.

Hayes warns that some sitters burn out when they realize it can be emotionally taxing. "Many people believe it's an easy way to make a little extra money," she said. "They soon learn otherwise."

Denise Peters, a Los Angeles City Unified School District teacher who works part time for Accredited Nursing, agrees, but adds, "The greatest joy is the pure, unadulterated love these kids give. The kids make it the best job in the world."

For more information on Respite Child Care, contact the North Los Angeles Regional Center, 8353 Sepulveda Blvd., Sepulveda, 91343-6512, (818) 891-0920.

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