Health Insurance Crisis for Children

Unhelpful customer service agents, voice mail purgatory, lost paperwork, government regulations, sheer frustration...

Everyone deals with customer service nightmares, but for some parents, the stakes are much higher — the health of their children.

Despite the fact that the U.S. is the richest nation on Earth, nine million American children do not have health insurance. Often, this means that a minor health problem goes without treatment until a child becomes very sick. Some of these children have died.

Many of the millions of uncovered children are eligible for government health insurance programs, but child advocates say some government officials are deliberately making it harder to enroll in these programs by creating a blizzard of bureaucracy and red tape — all, allegedly, to save money.

Richard Uhr says re-enrolling his grandson, Robert Uhr Jr. for public insurance was the fight of his life. The boy's father could not take up the battle as he is deaf and could not have made the necessary phone calls. Richard showed ABC News a letter which indicated his grandson would not be able to keep his health care coverage.

"It was as if it was in slow motion," Uhr said. "But when the clock is running and he's about to run out of insurance, it's not slow motion for me," Uhr said.

Tamika Scott's son, Devante Johnson, was dropped from public insurance because of a paperwork snafu while he was battling advanced kidney cancer.

"I went into the office, crying, letting them know, 'look, my son is dependent on this,'" she said. "And each time, 'I'm sorry.' But sorry can't help save my child."

Both of these families live in Texas, where one out of five children lacks health insurance — the highest rate in the nation. Perhaps not coincidentally, the state also has some of the biggest paperwork burdens. The red tape is so thick that there are now full-time experts to help families plow through the paperwork.

We sat with one health care "navigator," Rosie Martinez, as she helped one family apply for coverage for their young son.

"This mother had given up until I was able to get in touch with her," said Martinez.

In a statement, the Texas Commission for Health and Human Services told ABC News the goal of keeping the paperwork simple "must be balanced against our ability to ensure Texas taxpayers that the families using these services meet the requirements."

Some parents and child advocates don't buy it. They believe state officials in Texas and across the country deliberately make the bureaucratic maze more difficult in an effort to save money.

"My feeling was that it was intentional," said Richard Uhr. "The state's saving money by not enrolling children."

Ron Pollack of the health care advocacy group Families USA says this is indeed a question of money.

"If a state is having a fiscal problem," he explained, "they do one of two things: they lower the eligibility standards, or they establish administrative impediments that prevent eligible people from enrolling."

If the accusations are true, it could actually be costing taxpayers more money because spending money on kids' health now can save money later. For example, without government insurance, the Jonathan and Dea Sage could not afford therapy for their son Benjamin who has Down syndrome.

Jonathan Sage says he "couldn't even begin to" pay for his son's care out of his own pocket. With therapy, they hope Benjamin will be able to support himself one day, which ultimately saves taxpayer dollars.

Johnson's mother only got his health insurance restored after her state representative, Sylvester Turner, stepped in.

"There are a lot of other Devante Johnsons," Turner said. "While politicians squabble ... children are the ones who are suffering, children are the ones who are sick."

Scott had to deal with a parent's worst nightmare — watching her son suffer.

"He became so sick, he became so frail, he could barely walk," she said. "I feel like if he'd had insurance, he wouldn't have had to endure that."

Despite requests, ABC News could not get an interview with Texas leaders, including the governor, the health commissioner, and the powerful lieutenant governor, David Dewhurst.

However, Dewhurst did speak on this issue after the state legislature passed a bill removing some of the paperwork burden, which they predict will result in another 100,000 children enrolling for coverage.

"It's good for the children and it's good for our health care system," Dewhurst said.

But it's too late for Devante Johnson. He died on March 1.

"He had cute little dimples, everybody loved his dimples," his mother recalled. Scott is now using her son's case to fight for health coverage for every child.

"I think God has a purpose for us, and Devante has done his job," she said. "His purpose has been fulfilled, and is being fulfilled through us today."