Parents Fear Loss of SSI Payments : Funds Called Crucial in Covering Costs of Care for Severely Disabled Children

A royal blue breathing hose hangs from her throat and a feeding tube winds from a small hole in her stomach. Machines beep incessantly as oxygen and medication are pumped into the infant lying placidly on the couch of her parents’ North Hollywood home.

Year-old Angelique Petitt is unfazed, spared of the knowledge that without these fragile lifelines--and around-the-clock attention from her mother--she would be dead within hours from a host of congenital defects.

But Angelique’s parents are painfully aware that this support is available only with the help of the Supplemental Security Income they receive from the federal government.

The family uses its monthly, $329 cash grant to pay for the private health insurance that covers the nearly $1 million worth of life-sustaining machines, hospital visits and operations Angelique has endured since her birth last May. Now they fear that help may be cut by Congress.

“I’m worried that if they take the SSI away, we’ll be without benefits or medical help for her and she has too many problems,” said Angelique’s mother, Angel Petitt. “She’s in the hospital more than she’s even home sometimes.”

Dozens of families in Los Angeles share the Petitts’ fears that Congress’ proposed budget cuts to SSI would jeopardize the survival of their own severely disabled children. In the political debate on how much to cut SSI benefits--which also extend to disabled adults and recovering substance abusers--advocates of the program say severely sick children will be hurt the most.

For 21 years, SSI benefits have helped poor and low-income families keep their ill and disabled children at home and out of institutions. In California, 31,850 children are helped by the program, according to the state Department of Health and Human Services.

Some of these children, like Angelique, have beaten the odds by surviving past their first birthday. Experts say the personal attention and affection the children receive at home sustain them as much as their medication.

“The lack of stimulation and support for any child, but especially for those with multiple and severe problems, will decrease the child’s life expectancy,” said Marilyn Holle, an attorney with Protection and Advocacy Inc., a statewide rights organization for the disabled.

But backers of a Republican proposal to cut SSI benefits, along with welfare and other government aid, say the program has gotten out of hand. The financial outlay increased from $1.3 billion in 1989 to $5 billion in the current fiscal year. The number of recipients has also mushroomed from 300,000 to 900,000 children nationwide.

The GOP measure, which passed the House in March and is being debated by the Senate, calls for eliminating the cash payments that families may use any way they like--for health insurance, medical equipment, food, utilities or clothing--so long as it benefits the child. Instead, the cost-cutting plan calls for providing such families with vouchers to be used only toward medical services that critics fear would be severely limited.

Though Republican and Democratic senators have differing views on welfare reform, they may reach a consensus on SSI, said Lawrence O’Donnell, Democratic staff director of the Senate Finance Committee.

“We think it’s developed into something that we cannot afford . . . in a climate of severe budget cutting,” O’Donnell said.

If the legislation takes effect, about 8,600 blind and disabled children in California who have qualified for SSI benefits may be denied cash assistance, according to the state Department of Health and Human Services.

In addition, an unknown number of children would be cut entirely from the SSI program under the GOP’s efforts to tighten eligibility standards.

Currently, children who do not meet the government’s predetermined standards of illness may be assessed individually, a part of the program that is especially helpful for those with a combination of mental and physical problems. But under the measure before Congress, those evaluations would most likely be eliminated.

“Children are more than just pieces of paper and they have to be looked at individually,” Holle said. “What I fear is that we’ll go back to the old days when doctors would say, ‘Let’s put these kids away in nursing facilities or shelters.’ ”

Tamara Baskin, 8, of North Hollywood was one of those children eligible for SSI only through individual assessments.

For two years, Carol Baskin tried to convince state officials that her daughter’s condition of brittle bones was a handicap that made her eligible for the program. They insisted, incorrectly, that she had to have a mental disability as well, she said.

Only after a lengthy appeal and a doctor’s note about the lifelong disorder did Baskin start receiving benefits in late 1990, when her daughter was already 3 years old.

Tamara’s disorder has stunted her growth, stalling her body’s size at that of a toddler and leaving her in a wheelchair most of the time because she can’t walk. Her bones are so porous and frail they break with the slightest touch.

So far this year, Tamara has broken nearly a dozen bones. A month ago doctors deliberately broke her legs to straighten out the soft limbs which bend inward because they’re so weak. There are pins throughout her arms and legs to hold them together.

Baskin quit her job as a beautician to stay home with Tamara until she was old enough to attend school. But then there was another problem: Bus drivers couldn’t properly handle Tamara’s frail body. One time a driver held her the wrong way and broke an arm and a leg. So Baskin became a bus driver to take her daughter to school.

“I didn’t trust anybody handling my baby, so I started following the bus to school to make sure everything was OK,” she said. “I decided I should just drive the bus myself.”

The job leaves Baskin five hours free each day for doctor’s visits or errands for her daughter. Doctors urge her to remain with Tamara full time. She can’t. She needs the money.

With no child support from her ex-husband and a salary that just covers some of the bills, Baskin said she and her two children would be destitute if it weren’t for SSI benefits.

“SSI supplements some things, but it’s not like I’m getting ahead,” she said. “All I know is that if this [SSI] gets cut off, we might be a homeless family with a daughter in a wheelchair.”

The cash benefits also have been the saving grace for the Petitt family, which has relied on Robert Petitt’s income as a computer programmer, as well as help from other family members, since Angel took an extended leave from her phone company job to care for their daughter.

Since birth, Angelique has been plagued by a cleft lip and palate, underdeveloped parts of her brain, and a paper-thin throat that’s a magnet for breathing problems and infections. She’s had four surgeries and recently returned from a two-week hospital stay after a routine checkup revealed she had pneumonia and an infected trachea.

Similarly, the $433 a month Karen Morris receives for her daughter, Amy, helps cover the staggering utility bills the family racks up with daily, long-distance phone calls from their home in Littlerock to medical experts in Los Angeles. They also use their air-conditioning continuously to keep the 5-year-old girl from getting too hot and lapsing into seizures.

Like Angelique, Amy too has a multitude of problems: slight retardation, legal blindness and partial paralysis due to spina bifida, a defect that affects the spinal chord and nervous system. She doesn’t talk, but coos like an infant. She’s fed through a tube inserted in her stomach and spends 20 hours a day in a full body brace.

Morris’ medical bills were so high in the months following Amy’s birth that her insurance company cut her off. She applied for SSI soon after but was denied repeatedly. She says officials told her Amy wasn’t considered handicapped.

“I have pictures when she was born that would put you in shock because of all the problems she had and they were saying they couldn’t decide if she was handicapped,” said Morris, a petite woman with a soft, high-pitched voice that grows fiery as she recounts her problems getting help for her child.

Morris, who has two other children and recently remarried, quit her job as a dispatcher for a Glendale car dealership in 1993 to care for her daughter full time.

Finally, in February, 1994, after numerous pleas and the help of a social worker, Morris received $240 a month that eventually increased to $433. SSI eligibility also entitled her to nursing assistance from California Children’s Services in Lancaster and MediCal benefits for Amy that have covered doctors’ visits, medication, a wheelchair and the brace.

“I’m sure there are some people who abuse the system, but we’re not part of that,” Morris said. “If the government thinks they’re in debt now, they’re going to be in debt even more because these kids are going to be institutionalized and that’s certainly not going to be cheap.”