LIHUE — Janice Bond knows what it’s like to not get answers when a family member is in the hospital.
On March 15, 2012, Bond found her son, John Stem, unconscious in his home.
“He was foaming at the mouth, and I saw the whites of his eyes,” she said. “He looked like he was going to heaven, but I told him ‘You’re not going to heaven yet.’”
Stem, 49, was taken to Wilcox Medical Center. It was determined that he had necrotizing fasciitis, a bacterial infection that destroys tissues under the skin, and was eventually transferred to Straub Medical Center on Oahu.
“At the hospital, they kept telling me ‘HIPAA,’ ‘HIPAA,’ and couldn’t tell me anything,” she said.
HIPAA stands for the Health Insurance Portability and Accountability Act, which keeps medical information confidential. Because Stem was an adult, according to HIPAA rules, hospital personnel couldn’t give Bond any information on his condition.
“People won’t talk to you if you don’t have the authority to have a say in someone’s care,” she said. “Regardless of age, he’s my child.”
Stem was discharged in May that same year, leaving his care in the hands of his mother. Bond said she was given little instruction about how to take care of him.
Four years later, Stem is thriving and owns his own business. But the experience of waiting for answers that would never come, and being his sole caregiver, left Bond wanting to change the system.
Bond, who is the team leader for AARP Kauai, joined the Hawaii CARE Act Coalition in 2013. That’s an organization made up of groups like AARP Hawaii, American Legion and The Caregiver Foundation, and works to support family caregivers and their patients.
“I know what we can do for caregivers, and I have firsthand experience,” she said.
As part of the coalition, Bond advocated for the Caregiver Bill, which requires hospitals to establish procedures giving family caregivers the opportunity to receive instruction in the medical tasks required when their loved ones are discharged.
The coalition worked for three years, lobbying the Legislature to pass the Caregiver Bill. This May, the state House and Senate voted unanimously to pass the Caregiver Advise, Record, Enable (CARE) Act, allowing hospital patients to designate a family caregiver who can receive instruction, prior to discharge, about the medical tasks required when patients go home.
“The bill talks about caregivers for the elderly, but sometimes it’s the parents who are taking care of their children,” Bond said.
State Rep. Jimmy Tokioka, who represents Kauai’s District 15, credits Bond’s testimony with getting the bill passed.
“When she came to lobby, she had personal stories about her concerns, and that helped us crack the bill,” he said.
In addition, Tokioka said, “AARP Kauai did a phenomenal job in educating the Kauai legislators. Janice and Stu Burley were incredible in their passion and took their time to help us.”
State Rep. Dee Morikawa, who represents Kauai’s District 16, worked alongside the Hawaii CARE Act Coalition to get the bill passed.
“Ultimately, we want to make sure caregivers have the opportunity to know how to take care of loved ones when they leave the hospital,” she said.
Morikawa, who serves on the Human Services and Health committees, said the bill didn’t pass last year because the hospitals weren’t on board.
“Hospitals have a problem being mandated what to do,” she said. “So we had to figure out a way to word the bill to address their concerns.”
In June, Gov. David Ige signed the bill into law. It went into effect at the beginning of this month.
“It was very exhilarating to see it become a law,” Bond said. “It seems like such an easy thing to ask for, and I learned a lot.”
In addition to working with AARP, Bond is a member of the East Kauai Lions and the Kauai Democratic District Committee. She also serves as a commissioner for the Hawaii Commission for National and Community Service and was a teacher at Kapaa and Kauai high schools.
Bond, who has fostered 35 children, said she is called to help others.
“God put me through so many things to help people,” she said.