In a Stressful State : Budget Deadlock, No Paycheck Put New Pressures on Mother of Disabled Sons

Roslyn Howard is worried and scared.

“The bills have been stacking up while I’ve been waiting for the state to send us money,” she said Wednesday as she sat in her home here with her two developmentally disabled sons.

Howard is, in effect, an employee of the state. She works for the minimum wage--$4.25 an hour--in a state program called In Home Supportive Services. By providing 24-hour-a-day care for her sons, Jonathan, 22, and Michael, 21, Howard saves the state the expense of hospitalizing the two severely retarded young men.

“I’m the sole support, and we live on what I make from the In Home Supportive Services,” said Howard, who is divorced. “So when the money stopped coming, it became very stressful.”

Because California is without a state budget, payments to Howard and other in-home care givers ceased as of July 1. Howard is among hundreds of in-home workers with the developmentally handicapped who have been stranded without pay.

On Tuesday, a judge in San Francisco ordered the state to resume paying the in-home workers, whether a budget has passed or not.

“Thank God for that,” Howard said Wednesday morning. “But I wonder how long it will take for the payments to get here? And then I wonder what the state will do, what kind of cuts it will make, when it finally passes a budget.”

Howard said she also worries about what will happen to the Developmental Disabilities Center of Orange County. The center, a nonprofit private agency, handles all state-funded programs in the county for about 7,000 developmentally disabled adults and children.

Officials there have announced that the center must close its doors Friday afternoon if a new state budget has not been signed. The center has been borrowing money to pay its bills while awaiting money from the state, but officials said they can no longer secure any loans.

Howard said her younger son, Michael, is still eligible for public school, but that Jonathan, who has completed public school, needs the Developmental Disabilities Center for training opportunities.

“If the center closes its doors, Jonathan will have no place to go (for training),” Howard said. “He will not have a job; he will not have an educational program. There will be no workshop for him to go to, not even a day-care program. The Developmental Disabilities Center is my resource center.”

When the state set up its programs to help the developmentally disabled, it designed a network of 21 private, nonprofit centers throughout the state to funnel the funds to providers. The centers are not direct arms of the state, and their employees cannot be paid with IOUs. All of the centers, including the one in Orange County, are thus closing down either this week or next week.

A special relief bill to continue funding the centers was voted down Monday in Sacramento.

Howard said she can’t understand why the handicapped have become pawns in the political battle between Republican Gov. Pete Wilson and the Democrat-controlled Legislature.

“People may think something like this would never happen to them, but they should realize that they are always just one step away from having someone handicapped in their own home,” she said.

“At any time, a person could have a stroke or a disabling accident, and their relatives could be in the same position as we parents who are taking care of developmentally disabled children,” she added.

When she was first married, Howard said, life seemed full of hope for her and her husband. They had both embarked on careers as teachers.

“We didn’t know either of our sons was developmentally disabled until each was about nine months old,” she said. “The cause of their developmental disabilities has never been determined. We just don’t know how or why it happened.”

Howard got her bachelor’s degree in education from Ohio State University in 1975. A year later, she and her husband, a college professor, moved to Orange County and bought a house in Fullerton.

But Howard said the stresses and strains of having two developmentally disabled children “contributed to problems in our marriage.” By 1978, the couple separated, and in 1980 they were divorced. Howard and the two boys were allowed by the divorce settlement to remain in the house. Their father, she said, has now moved out of state and no longer has any communication with his sons.

Howard said that after the divorce, she worked outside the home and placed her sons in schools and day care until 1985.

“Eventually, I found that no one could take as good care of them as I,” she said. “So I decided to make this my career. And I’m good at it. My sons have not had to be in any hospital since 1985. That’s an accomplishment. I love my sons, and it’s an honor to take care of them.”

Nonetheless, Howard said, jobs like hers are demanding. “I work 24 hours a day, seven days a week, 365 days a year, with no vacation and no fringe benefits. The maximum number of hours I am paid by the state is 283 hours per month per son, at minimum wage.”

When the state ceases paying any money at all, as it has since the July 1 budget crisis, Howard said the situation of caretakers for the disabled becomes fraught with anxiety.

“If they (state officials) can be so capricious about paying us, obviously they do not respect the level of effort involved,” she said.