Loss of Benefits Would Hit Family Hard

She is the mother of six children and the grandmother of 13 others. She spent decades as a health care worker, taking care of people unable to take care of themselves.

But even a lifetime of mothering could not prepare 61-year-old Patricia Jaynes for Alex.

“I call my grandchildren angels,” Jaynes said. “They all teach me something about myself. . . . And Alex is one special angel.”

Jaynes’ 12-year-old grandson, Alex, suffers from attention deficiency hyperactivity disorder and autism, conditions that make it difficult for him to learn and socialize.

He is one of the 75,000 disabled children in California who receive monthly Supplemental Security Income checks and Medi-Cal health care benefits--and one whose SSI benefits may soon be cut. A provision of the welfare reform law redefines childhood disability and will require the children enrolled in the SSI program to be reevaluated. Only low-income families are eligible for the cash assistance.

Advocates say they fear that many youngsters with emotional and mental disabilities will be among those cut from the program. Losing the benefits, they say, would strike a serious blow to caregivers like Jaynes, who receives about $500 a month from SSI.

“If we were able I wouldn’t accept [the help], we would take care of him on our own,” Jaynes said. “But we’re not able to do that.”

Tens of thousands of other families also depend on the monthly checks and Medi-Cal benefits to care for their children, advocates say.

Aside from helping pay for child care, food and shelter, the benefits also help low-income families buy special formulas or food, make home modifications to accommodate the needs of a disabled child, and pay for special toys and learning materials.

Jaynes and her 75-year-old husband offered to care for Alex after the boy’s mother became so ill with cancer she could no longer care for him.

She quickly found that few of the child-rearing methods that worked with other children seemed to help Alex. Raising him has taken patience and prayers, she said.

The 12-year-old has difficulty expressing himself. He becomes easily upset and is unable to play with other children for very long. He has difficulty learning and is enrolled in special education classes at a public school.

“He’ll say, ‘I don’t like myself, I’m so stupid,’ ” Jaynes said. “Nobody says that to him, but he’s hearing something that registers that. And that breaks my heart.”

Even sleep is a challenge. There have been times when he has not slept for two days.

“He’ll just tear up the whole house,” Jaynes said. “He’s looking for something. His mind is just traveling, he’s searching. Like he’s trying to find a gold mine.”

The Jayneses use SSI money to take Alex on outings. They buy him books, and have enrolled him in a program for children with similar disabilities.

Recently, Jaynes received a letter saying two of the three medications that Alex takes will no longer be covered by Medi-Cal. So the SSI money they receive each month will help pay for the medicine.

Through a support group, Jaynes has met working parents she is especially worried about.

“If all these other programs shut down I don’t know what’s going to happen,” she said. “There are people out there who are not just laying on welfare. That’s what people want to think, but that is not true.”

Because of the changes in Aid to Families With Dependent Children, many fear there will be little relief for poor families of disabled children who become ineligible for federal assistance.

“These are the parents who are least able to get out into the job market,” said Thomas Yates, an attorney with the SSI Coalition in Chicago.

Even families with working parents will suffer from the loss of benefits, said Richard Van Horn of the Mental Health Assn., a nonprofit organization based in Los Angeles County. Many work at low-paying jobs with little or no health insurance. Mental health coverage is often unavailable.

“If there is any [mental health] coverage they’ll run out very quickly--then they’re out of luck,” Van Horn said.

Parent groups at the Exceptional Children’s Foundation in Los Angeles usually focus on the emotional hardship that comes with caring for a disabled child.

But lately parents’ thoughts have turned to other issues.

“Virtually every week we have to debrief about rumors and facts of welfare reform law and immigration law changes,” said Karen Gilman, social worker for the foundation’s infant development program.

The worries are legitimate, she said. “We do have kids who will one day be rendered ineligible for the SSI they’re currently receiving.”