But of special concern to national groups, Alker said, is the precedent it could set for other states.
Among those to join the institute in protest are the American Academy of Pediatrics, American Heart Association, Children's Defense Fund, Easter Seals and March of Dimes Foundation, Voices for America's Children, National Health Law Program and National Women's Law Center.
Like many states, Utah is looking to redesign its Medicaid program to contain costs. A blueprint submitted in July for federal approval calls for moving Medicaid patients into managed care networks that would be paid a fixed amount per patient and would share in any leftovers or absorb any losses.
The goal is to pay providers to keep patients healthy and out of the hospital, instead of just giving more tests and treatment.
But if anticipated savings don't materialize, Utah proposes to ration care by cutting services. Also, providers would be free to charge patients $40 deductibles and co-payments ranging from $15 for inappropriate use of emergency rooms to $220 for hospital stays the highest in the nation.
It's these pieces that cause heartburn for child advocates.
The charges are supposed to encourage patients to take responsibility for their health, but advocates fear they will cause some to forgo needed care. And since seniors and the disabled in nursing homes are excluded from the reforms, children and young families will bear the brunt of cuts and costs, they say.
"We do not believe it is appropriate for insurers to decide whether children have to pay more to access needed health services as a result of their [or more likely their parents'] behavior," states the group's Aug. 3 letter to Sebelius.
Children comprise 57 percent of Utah's Medicaid enrollees but account for only 28 percent of the costs.
Robert W. Block, a pediatrician and president-elect of the American Academy of Pediatrics, said research has shown cost-sharing can cause families to delay or skip doctor visits.
"It's short-sighted to put children at risk," said Block. "A lot of health issues adults struggle with now, like diabetes and heart disease, are preventable through appropriate pediatric care."
Architects of Utah's reforms downplayed concerns, noting key provisions continue to enjoy broad support.
"It's not a deal killer if we don't get those pieces. The real core of the reform is how we compensate providers," said Sen. Dan Liljenquist, R-Bountiful.
Said Provo Republican Rep. Dean Sanpei, an executive at Intermountain Healthcare: "My hope is that the feds will come back and say here are elements we like and here are elements we don't like. ... Our goals are the same. We want to control costs, but in ways that do not harm access or quality."
O Read the letter > bit.ly/p50ico