Carl and Yolanda Streitberger wanted to save their son’s life and they wanted to do it using a surgery not endorsed by mainstream doctors in Salt Lake City.
The Streitbergers fought Utah authorities over the right to make medical decisions for their boy.
The couple lost the fight. Over the parents’ objections as Jehovah’s Witnesses, the boy underwent three surgeries in 1997 that involved blood transfusions.
Today, the Streitbergers’ 6-year-old boy is alive and well, physicians say, only because of the surgeries made possible by the state’s intervention.
This week, members of the Utah House of Representatives will take up a Senate-approved bill that calls for clear and exacting standards state agencies must meet before they can intervene in a child’s medical care. Could the Streitbergers assert their parental rights as “reasonable, prudent and fit caregivers” under this legislative proposal and fight off state intervention?
“Then, I think, we’d have trouble,” said Robin Arnold-Williams, the executive director of the state’s Department of Human Services, who was director when Utah took custody of the Streitbergers’ son.
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Taking a break?
Of course, the Streitbergers are not driving today’s debate. Parker Jensen and his parents, Daren and Barbara, are doing that.
Last summer, the Jensens and the state feuded over the chemotherapy that doctors at Primary Children’s Medical Center believed was the only way to save the 12-year-old boy’s life. The saga peaked as the Jensens were charged with kidnapping for fleeing Utah to avoid the court-ordered treatment. And concluded with a settlement that kept the boy going to routine doctor visits.
The Jensen case illustrates how the pendulum of Utah policy and public opinion has swung from protecting children at all costs — as was the case with the Streitbergers — to guarding the rights of parents. Using the Jensen case as a clarion call, a group of Utah lawmakers and a network of parental rights groups are now vigorously challenging the “protect the child” paradigm.
“The Jensen case came up and all of the things we’ve been telling [lawmakers] for years were in their face,” said Gayle Ruzicka, president of the Utah Eagle Forum.
One of the main vehicles for the hopes of parental rights activists has been Senate Bill 90, introduced by South Weber Republican Sen. Dave Thomas. It would prohibit the state’s Division of Child and Family Services from intervening in the medical decisions made by competent parents — defined as a “reasonable, prudent and fit caregiver.” The bill has been passed by the Senate and faces House scrutiny this week.
Donald Bross, a professor of pediatrics and family law at the University of Colorado’s Health Sciences Center, says the measure is an extreme reaction.
“No matter how misguided, no matter how much [parents] will regret it, we’ll let a child die as long as it’s a medical decision,” Bross interpreted the Thomas measure as saying.
The debate in Utah is in stark contrast to what is happening in many other states, where children’s advocates are pushing government agencies to intervene more aggressively in cases where youngsters may be at risk.
Usually, the public’s outcry is over an agency that “didn’t react” fast enough to save a child, said Deborah Stein, the director for policy and advocacy for Voices for America’s Children, a Washington, D.C.-based nonprofit that promotes added protection for children. “A range of reform efforts because the agency was trying to protect a child, that’s a new one to me.”
New Jersey is in the midst of reforms spurred by the discovery two years ago of the body of a 7-year-old boy decomposing in a box.
“You want to see a bad state, look at New Jersey,” said Karen Crompton, executive director of Voices for Utah Children, a longtime children’s right policy group in Utah. “We could be there.”
Like New Jersey, Florida is writing more protections for children into their child welfare laws.
In the Jensen case, Utah wanted Parker to undergo nearly a year of chemotherapy to eliminate what doctors diagnosed as Ewing’s sarcoma, a hard-to-find and, if not treated early, nearly always fatal bone cancer. The Jensens, however, believed the treatment wasn’t necessary, or, at the least, not yet warranted.
Today, they report Parker is cancer free while undergoing alternative therapy. Under an agreement with Utah officials, Parker is checked for cancer by an independent physician every three months.
Utah’s legislative response, according to state agencies, has been to fashion a bill that stifles the state’s ability to make a judgment about medical neglect.
Some 15 lawmakers have filed 32 bills focused not only on medical neglect but nearly every provision of child protection law in Utah.
“When you get a high-profile case, you can almost guarantee a law will be passed,” said Bruce Boyer, the director of Child Law Clinic at Loyola University of Chicago’s School of Law. “It’s very common to have a case and legislators to draft a response to prevent it from happening again.”