In 2013, Hawaii lawmakers introduced a bill to assure that child care programs employed safe sleep practices to prevent infants from suffocating in their cribs or succumbing to sudden infant death syndrome.

Advocates said then that Hawaii was one of only seven states that had not passed such a law. Among other provisions, Senate Bill 400 required that infants be put down to sleep on their backs, as recommended by experts to prevent SIDS.

The state Department of Human Services at first opposed the bill, arguing that safe sleep standards could be addressed through administrative rules rather than spelled out in legislation. So the bill’s language was changed to leave it to DHS to write the new rules.

“The DHS fully supports this amending language, which will allow the DHS to accommodate any changes to best practice and standards of care by rules,” the department wrote to the Senate Commerce and Consumer Protection Committee.

Three and a half years later, there are no rules.

From 2009 through 2014, 64 deaths in Hawaii were attributed to Sudden Unexpected Infant Death, according to a 2015 study by the state Department of Health.

That category includes SIDS, as well as infant deaths from unknown causes and accidental suffocation or strangulation in bed. According to the U.S. Centers for Disease Control and Prevention, about 3,500 infants in the U.S. are lost to SUID each year.

Overall, infant mortality in the U.S. declined from 2005 to 2013 by 13.1 percent, according to figures from the CDC. While Hawaii was slightly below the national average of infant deaths in 2005, it saw a smaller decline than the nation as a whole over the next eight years, and ended up with a somewhat higher rate – 6.37 for every 1,000 live births.

“Once we move past the legislation, we expect the agencies to complete the circle. The agencies should be following through.” — Sen. Brickwood Galuteria

In Honolulu alone, at least a couple of dozen infants have died of unexpected causes, accidental suffocation while in bed or other forms of SUID since the beginning of 2014, according to data provided to Civil Beat by the Honolulu Department of the Medical Examiner.

Over the past three years, DHS says three infants statewide have died while at day care facilities.

Figures like these are what prompted advocates to push for a Hawaii law to mandate safe sleep practices.

The formal rule-making process allows a department to fill in the details of a law and generally requires public notice and a hearing before the rule is filed with the lieutenant governor’s office. Administrative rules have the legal authority of a statute, with violations resulting in fines, loss of a license or other sanctions.

DHS officials say they plan to eventually incorporate safe sleep rules into a wide-ranging overhaul of child care regulations to meet new federal quality and safety standards. But even a draft of those rules is not expected until mid-2017, more than four years after the safe-sleeping law passed.

One of the main authors of the bill as well as advocates for safe sleeping practices say they are surprised and disappointed. While the department has continued to take steps initiated a decade ago to assure safe sleeping for infants, they say these measures fall short of what the legislation intended.

Day care operators, they say, are more likely to comply with a regulation.

“Once we move past the legislation, we expect the agencies to complete the circle,” said Sen. Brickwood Galuteria, a lead author on the bill. “The agencies should be following through.”

While administrative rules can be complex and take time, Galuteria said this one was simple. “It wasn’t rocket science,” he said.

Advocates Thought It Was Happening

Nancy Kern was one of the supporters of the bill. After her daughter died of SIDS in 1977, she volunteered for two decades with a Honolulu nonprofit dedicated to helping parents who had lost infants.

She’s now retired from a career in Hawaii state government and living with her son in San Diego. She hadn’t heard that the regulations had not been put in place until she was contacted by Civil Beat.

“They left everyone with the impression it was being taken care of, and I think everyone would be shocked that it’s not being taken care of.” — Lisa Kimura

“That’s really disappointing because that’s going to take years,” she said. “I would certainly have thought that by this time, the lion’s share would be done. … Several people provided testimony and expected this would be followed up in a much more timely manner.

“I was definitely one of them.”

Lisa Kimura said she and other advocates gathered material from other states that would enable DHS to offer online training, complete with all the information day care operators would need to finalize their own policies.

“Where we left off with them was they were routing the rules to the attorney general,” said Kimura, executive director of Healthy Mothers, Healthy Babies Coalition of Hawaii. That was in 2014, she recalls.

“They left everyone with the impression it was being taken care of, and I think everyone would be shocked that it’s not being taken care of,” Kimura said.

“They had the support of all these advocates. Everyone was willing to pitch in and get it done.”

The department says it has been promoting safe sleep practices for more than a decade, but concedes that these practices have not changed since the 2013 passage of SB 400.

The department’s child care licensing staff conducts initial reviews that include education about safe sleep practices and verification that they will be followed. This also is done during routine monitoring visits, spokeswoman Keopu Reelitz said.

Licensing staff discuss American Academy of Pediatrics guidelines, inspect cribs and playpens to ensure that they comply with consumer safety standards, hand out brochures and refer operators to a website with safe sleeping information, Reelitz said.

DHS also points to existing regulations that it says mandate safe sleep habits. Rules require that each child get a safe place to sleep, such as a crib, cot, mat or rug. But the rules are silent on practices such as having infants sleeping on their back. Another rule requires that a responsible adult remain within sight or earshot of children.

The department now intends to incorporate new safe sleep administrative rules into a comprehensive package being developed in response to congressional reauthorization of the Child Care and Development Block Grant Act.

This includes six separate sets of rules addressing child care subsidies and the state’s oversight of different types of facilities. DHS is revising the rules in consultation with the state attorney general’s office and hopes to have them in place by the end of next summer.

“It would have been great if we could have done it sooner, but we were not able to get it accomplished yet.” — Dana Balansag, DHS child care program administrator

Assuming the department hits that deadline and that the safe sleep rules are part of the final product, that would be almost four and a half years after the passage of SB 400.

“It would have been great if we could have done it sooner, but we were not able to get it accomplished yet,” said Dana Balansag, DHS child care program administrator.

Outgoing Sen. Suzanne Chun Oakland, another main author of SB 400, said that rule-making can take time.

“I don’t expect any department to take that long, but I know what their workload is,” she said. “I know DHS is trying to be as responsible as possible.”

Kimura, though, said the state has missed the chance to underscore the importance of safe sleeping guidelines.

“It really breaks my heart to think we’re losing so many opportunities,” she said.

Recent Deaths Involved Safe Sleep Issues

Civil Beat this month detailed the case of Wiley Muir, a 4-month-old who died in 2014 at a Honolulu day care. The medical examiner first listed the cause of death as bronchiolitis, but after Wiley’s mother, Cynthia King, consulted other pathologists, the medical examiner changed it to “undetermined.”

King also discovered discrepancies in the day care owner’s account of Wiley’s whereabouts when he stopped breathing. Therese Manu-Lee told police that he had been in her arms after drinking from a bottle. But an ambulance crew member reported that she had told him she put Wiley down for a nap and found him unresponsive 10 minutes later.

King said she also discovered that the day care operator failed to buy the type of portable crib that she had requested, and that Wiley was sleeping in a baby bounce chair.

In another recent case, a 6-month-old girl, Zoe Wurtz, died in an Ewa Beach day care of complications from hyperthermia after being left to sleep in a car seat in a room without air conditioning.

The family is now suing the day care owners. Among other things, they allege that the operators failed to follow an administrative rule requiring them to avoid exposing children to hazardous situations.

DHS provided the operators with materials about safe sleep, which they failed to follow, according to the lawsuit.

In a third case, a 2 1/2-month-old boy, Triton Forsyth, died at another Ewa Beach day care. The cause of death was listed as bronchopneumonia, but Triton’s mother, Clarice Forsyth, said he showed no signs of illness.

She said that Triton was put down to sleep on his side on a comforter on the floor in an upstairs room, where he was found unresponsive on his stomach an hour later. Forsyth said she knew about safe sleep guidelines that discourage side sleeping and call for firm sleeping surfaces, and assumed the day care operator knew about them as well.

“I think the state should have stricter rules and have these sitters go through training every year on safe sleep, how to take care of infants, because I’m sure that it changes,” Forsyth said.

Regulations Can Increase Compliance

Experts and advocates say that day care operators are more likely to follow regulations than recommendations.

Rachel Moon, professor of pediatrics at the University of Virginia School of Medicine, said an administrative rule establishes the standard of care. She said her research has shown that putting the policy in writing increases compliance.

It also gives day care operators something to point to if parents ask them to do something contrary to the guidelines, such as having infants sleep on their stomachs, Moon said.

She said most states spell out the standards in regulations, with some doing it by statute. States generally include some combination of seven safe sleep components: SIDS training for day care workers, putting infants on their backs to sleep, firm mattresses, no pillows in the crib, no comforters or quilts in the crib, no smoking in the facility and mattresses that fit tightly, leaving no space for an infant to get wedged.

Minnesota saw a dramatic decline in child care deaths after putting in place safe sleep rules including training of day care workers, Moon said, but then the state’s numbers began to inch up again. One factor may have been that training did not have to be repeated, she said.

Kimura said it’s important for day care providers to be trained on the reasoning behind the guidelines.

“It’s much more important to understand why than to be handed a piece of paper that says do this, this and this,” she said.

Early versions of SB 400 included a requirement that DHS train day care employees in safe sleep practices. As the bill made its way through the Legislature, this provision was removed.

Another change appeared to leave it up to DHS when and even if to write the new rules. Despite the expectations of the bill’s backers, the language was amended to say that day care providers would be required to comply with “any” administrative rules that “may” be adopted by DHS. The original bill simply stated that facilities would develop safe sleep policies “in accordance with rules adopted by the department.”

Galuteria said it may be time for the Legislature to follow up.

Kimura agrees. “The number one thing is that it does need to be elevated to the attention of all the advocates again,” she said.