Helping kids, helping families.

• Author: Bodel, Mimi
• Position: Includes related articles

While the new Clinton administration hammers out its version of health care reform, states continue to struggle with universal coverage for their own citizens. Among the most vulnerable populations are children with special health care needs.

Two-year-old Justin Smith's body doesn't produce the human growth hormone, a condition that costs $3,000 a month to treat. Although father Brad's employer-based insurance covers a large portion of the treatment, the premiums are escalating rapidly and the family is afraid it will lose its coverage. Justin's parents struggle to pay their share of the costs as it is. "Our whole life is devoted to paying medical bills. We can't afford to do more," says mother Cindy. When she sought state assistance, Cindy found no program for which her family was eligible because they made too much money. State health officials told her she apparently had three choices:

* Buy private insurance for Justin (at $1,000 a month, due to his "pre-existing" condition);

* get divorced and go on welfare; or

* move to Canada.

"This sounds more like an American nightmare than the American dream," exclaims Cindy, who says she cannot pay for a private insurance policy, and she refuses to leave her husband or country. And so the Smiths wonder whether Justin will be able to continue receiving hormone treatments or have to quit and be lucky to reach three feet in height on his own.

John, a healthy full-term baby at birth, got sick when he was 5 months old. It seemed like the flu--but within 12 hours, parents Carol and Curt Terwilliger knew they had serious trouble. The baby had spinal meningitis. He slipped into a coma and sustained damage to every part of his brain. His life, and that of his parents, was irrevocably altered.

Now, at seven, John has multiple problems: spastic quadriplegia, cortical blindness, mental retardation and a convulsive disorder. John also has two parents who love him, two healthy younger siblings and colored beads on the spokes of his wheelchair. But it takes 45 minutes to feed John a small bottle of liquid, and 45 minutes to spoon feed him a single meal. Carol, an MBA, gave up her career as a fiscal operations officer in a Medicare program to become full-time mom and caretaker for a child with special needs.

"Luckily I can stay home," says Carol, "because we can cover our expenses with Curt's salary and his employer's excellent insurance program." Nonetheless, the family is well aware that any change of job or company insurance carrier could put them in jeopardy of discontinuing John's coverage.

Donald Penzenik did have bad luck with employer-based insurance and was forced to "spend down" his family's resources to qualify his "uninsurable" son for Medicaid. Michael, who has cerebral palsy, mental retardation, scoliosis and a seizure disorder, was dropped by the insurance company that had covered him. In the meantime, Donald's new employer would not include Michael in the health coverage for his other family members. Desperate to provide for their son, the Penzeniks turned to Medicaid, but at great cost to the family's security.

"I impoverished my family," says Penzenik. "This was our reward for raising our child with severe disabilities at home. To qualify for Medicaid, all family assets, including our savings, individual retirement accounts and life insurance policies were 'spent down,' leaving my family unprotected and vulnerable to financial disaster." Now Donald and his wife, a nurse, are restricted in the amount they may earn, and they may not save for their other children's college or for retirement in order to keep Michael covered under Medicaid.

Today, serious illness and chronic conditions affect children from all sectors of the American population. Estimates of the numbers of children vary, but several surveys of different conditions (developmental disabilities, diabetes, cystic fibrosis, childhood cancers and other chronic medical needs) suggest that between 10 percent and 15 percent of American children have a chronic health condition; about 5 percent have serious health care needs; and 1 percent to 2 percent, or about 1 million children, have severe chronic impairments.

These children and families have a large stake in the national health care reform debate. The Clinton administration backs "managed competition," and may endorse a "minimum package" of benefits for all Americans. The insurance industry now supports an "essential package" of health benefits for everyone. Whether a "minimum package" or "essential benefits" would meet the extensive needs of children with chronic ailments and serious disabilities is a million-dollar question. Advocates remain hopeful in light of the federal ruling against Oregon's health reform and cost containment initiative. The Bush administration rejected Oregon's proposal, saying it discriminates against people with disabilities and conflicts with the Americans with Disabilities Act. But now there's a new ballgame in town.

In the meantime, families look to states for assistance in the immediate future. Thousands of families who are not poor enough to qualify for Medicaid, but are neither well-insured nor independently wealthy, struggle daily to provide care for their children and to make ends meet. Look at the problems such families face: obtaining and keeping private insurance for children who are considered high-risk by insurance companies; paying for expensive care not covered by insurance policies, such...