The Unwanted Ones

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The industry's policy towards Down's syndrome children has attracted the attention of Arizona's insurance regulators, civil rights activists and sympathetic legislators alike. "The kids we're talking about don't need special medical help," says Patricia Brown, executive director of the Association for Retarded Citizens of Arizona, Inc. (ARC). "They just need fair treatment."

The Palandris recently obtained health insurance for Jenna from an out-of-state company and consider their troubles resolved. The insurance giant that abandoned their child may find its troubles are just beginning.

VINCE AND ROSEMARY PALANDRI are devout people; as they see it, the children they have are the children God sent them. They don't expect perfection, which helps to explain why they also can reject with gentleness the disparaging labels that even well-meaning people tend to attach to Jenna. Whatever else she may someday be, Jenna will always be an important part of their family and that knowledge is a strong anchor.

"People ask me what treatment Jenna is receiving for her condition and I tell them, `She's at home with us, being a baby,'" Rosemary Palandri says. "She'll probably start school next year, but isn't she entitled to just be a baby for a while?" It would not even be a question with other children, and the Palandris decided a long time ago that Jenna deserved to be treated as much like other children as possible.

She is one of an estimated 250,000 people with Down's syndrome in the United States. Figures are not available on the number in Arizona but the incidence--one in every 800 to 1,100 babies--holds steady across socioeconomic and racial lines, according to the federal Centers for Disease Control in Atlanta.

Down's syndrome is the most common birth defect, or group of defects, known in human beings. Its presence is dictated from the moment of conception, or shortly thereafter, when one of the genetic transmitters called chromosomes emerges in triplicate in the fertilized egg. The condition is not a disease nor is it something a child will outgrow.

The effects, however, vary widely among individuals. One person may be quite limited intellectually while another is merely slower than average in learning to walk, talk and work a computer. To further complicate the stereotype, a sophisticated array of therapies now enable people with Down's syndrome to reach potentials that were undreamed of twenty years ago.

Treatment of the condition has progressed so far in recent years that an increasing number of school-age children with Down's syndrome are achieving at average or above-average levels in regular classrooms, Brown says.

Health problems are not automatic, either. Jenna's only significant medical problem to date was a blockage at the bottom of her stomach which required surgery when she was born in 1985. Called duodenal stenosis, the blockage occurs rarely in children with Down's syndrome, even more rarely in the general population.

The operation was covered under the family's BCBS Execucare policy. Vince Palandri had an individual policy for his family because, as a self-employed contractor, he did not qualify for any group coverage. He had maintained the policy faithfully, he says, often making premium payments in advance. "I get paid by the contract, so whenever a big job finished up, I'd pay several months' worth of premiums at a time," he explains.

The couple recalls receiving a letter from BCBS around the time Jenna was born, saying that if they ever missed a payment, the policy probably would be canceled. They assumed, although the letter did not give a reason, that it was sent because Jenna's birth certificate listed "Down's syndrome." But they had been paying premiums without fail since their marriage in 1981, and the threat of cancellation seemed so remote they soon lost track of the letter.

A year passed, a second daughter was born, and another year passed. Meanwhile, Jenna bloomed. "In fact," says her mother, "Jenna has had fewer illnesses than my other two. She's just a very healthy little girl."

Then, last February, BCBS notified the Palandris they had missed January's premium payment and their policy had been canceled. "I really don't know what happened, whether Vince misfigured payments or what," Rosemary Palandri says.

"I called membership services and asked if our insurance could be reinstated if we made the back payment," she says. "The person I talked to was very sweet. She suggested we just get a new policy instead of paying for coverage over a period that had already elapsed."

What the clerk did not explain--and what she later told the Palandris she did not even know--was that the company's bottom line towards children with Down's syndrome is a hard one. Blue Cross Blue Shield officials say the clerk was just following orders. Company higher-ups have the discretion to reinstate a lapsed policy, they say, but people who miss payments beyond the thirty-day grace period are usually directed to obtain a new policy.

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Kathleen Stanton