Program for Seriously Ill Children Faces Cuts

Tucked away in the state public health bureaucracy is a program that for 77 years has quietly cared for and saved the lives of the sickest of children -- from premature infants as tiny as kittens to youngsters fighting brain cancer and other catastrophic illnesses.

Because California Children’s Services assists youngsters with ailments that are not only severe but also can also wipe out a family’s savings, it has been virtually immune from political intervention. But that may soon end.

Under budget cuts proposed by Gov. Arnold Schwarzenegger, Children’s Services is targeted for a first-ever cap on enrollment and for imposition of a waiting list. Treatment would be withheld, at least temporarily, from a monthly average of 1,256 children -- mostly from low- and middle-income families, many in the country illegally.

Alarmed supporters say the governor’s plan would delay or deny children’s access to highly specialized medical care and could have grave consequences.

“They may die while they are waiting for the care they need,” Alan Lewis, a pediatric cardiologist at Childrens Hospital Los Angeles, said in a recent interview.

But as Schwarzenegger struggles to restore order to state finances in this era of mega-billion-dollar budget shortfalls, he has labeled the growth of Children’s Services spending unsustainable and ordered the program to take its share of cuts.

Administration officials say that, over the years, Children’s Services has evolved almost into an entitlement program, with virtually no budget limits. State costs alone have increased by 82%, or $84.7 million, in the last four years, budget writers have estimated.

Opponents of the budget cuts have gained the backing of newly elected Assembly Speaker Fabian Nunez (D-Los Angeles), who has promised to fight the reductions. “We’ve got kids who need urgent care. We cannot put their lives in danger,” Nunez said.

Children’s Services officials hope Schwarzenegger will do as he did in December when he withdrew a proposal to eliminate some services to developmentally disabled children and adults.

That reversal followed statewide protests by advocates for the disabled. But the governor’s budget has deployed similar enrollment caps to rein in treatment programs for AIDS, cervical cancer and breast cancer.

Children’s Services has routinely accepted patients until age 21 with such extraordinary medical conditions as hemophilia, cystic fibrosis and congenital heart disease and those in need of organ or bone marrow transplants.

Guided by the notion that no child should go without treatment for lack of funds, it is open to children whose parents either earn less than $40,000 a year or who face medical bills that could exceed 20% of their income. In some cases, however, income is no factor.

Children’s Services officials agree that their program is costly, but say that is simply because of the nature of its work. Founded in 1927 to assist children crippled by polio and cerebral palsy, the pioneering effort matured into one of the most expensive and rapidly growing of government health services, now costing an estimated $1.2 billion a year in federal, state and county funds. The current caseload is estimated at 179,000 patients.

Most patients come from low-income families enrolled in the Medi-Cal healthcare system or Healthy Families, an expanding insurance program for children of the working poor whose incomes are too high for them to qualify for Medi-Cal.

Children in these programs would be exempt from the proposed cuts, chiefly because both are heavily subsidized by the federal government.

However, a smaller group whose care is financed by state and local taxpayers would be affected. This group includes children from families that are more affluent or that are in the country illegally. The governor proposed capping enrollment of this group at its current level -- about 37,600 -- and creating a waiting list for applicants to be admitted on a first-come, first-accepted basis as slots became available.

Administration officials and healthcare providers said slots typically would open when patients became 21, achieved cures or died.

Budget documents indicate the changes would save $1.9 million in the next fiscal year.

Children’s advocates and healthcare providers say they recognize that the governor must make heart-wrenching decisions to return California to financial stability. But they stress that children stricken by cancer, for example, must receive attention as soon as possible.

“Sick children will get sicker. Inevitably, some will die,” San Francisco pediatrician Lucy Crain of the American Academy of Pediatrics testified at a recent Senate hearing. “These children cannot wait for healthcare services, if they have any hope of survival.”

Medical specialists say the survival rate for children with cancer is an amazingly high 77%, if the patients are diagnosed and treated early.

The costs, however, can be staggering. For example, consider the effect on a family of a very premature infant’s need for heart surgery: The average hospital bill for a three-month stay would have totaled at least $666,000 in 2000, according to research by a children’s hospital association. Even if the child did not need surgery, the bill would have averaged almost $200,000 per month. Doctor and pharmacy bills would be extra.

“These are very, very expensive children,” said Laurie Soman of the Children’s Specialty Care Coalition. “Someone is going to be paying for it. The question is who? The state? Counties? Hospitals? Doctors?”

The notion of budget cuts to Children’s Services gives shudders to many highly stressed parents whose youngsters have undergone multiple major surgeries -- children for whom even catching the sniffles may be a matter of life or death.

“It’s almost like she is going to die when she gets sick from a cold,” Jillian Cardiel said of her 3-year-old daughter, Isabel. “Four or five times during the winter, she goes to the hospital with pneumonia.”

Isabel was born with multiple defects of the heart, lower spine and right eye and had two thumbs on her right hand. At age 6 months, she had her first heart surgery. Later, the extra thumb was removed. More surgeries are ahead.

Cardiel of Rowland Heights said she had to quit her job at a lighting manufacturer to care for Isabel. Without the job, she lost her healthcare benefits and had to turn to Medi-Cal and Children’s Services for help.

Without the heart surgery, “she would definitely have died,” Cardiel said.

Another mother, Celina Barham of San Pedro, remembers the shock of getting the first medical bill -- totaling $150,000 -- for the treatment of her son, Cory, 9, who had been diagnosed with leukemia when he was 4.

Barham said the family’s private insurance had paid 80% and Children’s Services had paid the remaining 20% for a long series of surgeries, hospitalizations, bone marrow tests, spinal taps and chemotherapy. She estimated direct treatment costs at more than $500,000.

“We couldn’t have afforded it,” said Barham, whose husband is serving in Iraq. “We didn’t qualify for Medi-Cal because our income was too high. Children’s Services is a blessing for middle-income families.”

Some children’s advocates recognize the consequences of the governor’s proposed budget reductions but tend to downplay the potential for deaths.

They note that, even now, some children must wait several months for appointments with overburdened medical specialists. They assert that children on a waiting list would find treatment in emergency rooms on “an ad hoc basis” and eventually be hospitalized.

No one is certain how the budget cuts would play out. However, program administrators such as Betsy Lyman, assistant deputy director for primary care and family health at the state Department of Health Services, are concerned.

Asked about warnings of possible deaths, Lyman paused a moment. Her voice broke as she replied, “These are painful times. We will do whatever we can to find these children and get them into care.”

Because state budget cuts continue to put financial pressure on local governments, healthcare administrators worry that local taxpayers could eventually be forced to pick up some of the state’s 50% share of Children’s Services costs.

Robert Frangenburg, director of L.A. County’s Children’s Services office, estimated that, under the governor’s plan, 5,500 local applicants might be put on the waiting list but seek interim treatment at county hospitals.

“These are children who are not eligible for Medi-Cal, not eligible for Healthy Families and probably most of them are undocumented,” he said, although some might qualify for emergency assistance from Medi-Cal.

As an example of such aid, Elvia Barboa, program director of Padres Contra el Cancer, recalled that recently a 14-month-old baby “with a tumor the size of a basketball” had come to her attention.

In this case, she was able to route the baby and the family immediately to specialists at Childrens Hospital Los Angeles for urgent care. “Medi-Cal does help in certain situations,” Barboa said.

Administrators say there more uncertainties ahead. Some fear that if children now receiving services lose their membership in the Healthy Families insurance program, they also will automatically be dropped from Children’s Services. Schwarzenegger has proposed that enrollment in the growing Healthy Families program also be capped and that waiting lists be created there too.

In addition, if the governor pushes through his proposed 10% cut in the Medi-Cal rates of physicians, more doctors could drop out of the Children’s Services program, aggravating the shortage of children’s specialists.