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Since her 86-year-old mother Bernarda was diagnosed with dementia in 2007, Darlene Rodrigues has gotten used to doing more with less.
Less money — because as her mother’s primary caregiver she foots the bill for various medical and transportation expenses.
Less time — because between bathing, feeding and taking her mother to appointments, her personal time consists of work, school and sleep.
Less energy — because in Rodrigues’s words, the responsibility of ensuring the health of another adult can take “an emotional, physical and spiritual toll.”
“I was driving myself crazy, I was gaining weight and my diabetes was going out of control,” said Rodrigues, who works part-time as a grant writer for Faith Action for Community Equity.
“I’ve given up a lot of things.”
During the last session of the Hawaii Legislatgure, Rodrigues testified twice in support of the Kupuna Caregivers Act to provide assistance to people like her.
In July, Gov. David Ige signed the legislation, which appropriated $600,000 to help some of the more than 150,000 family caregivers in Hawaii like Rodrigues take care of their kupuna while remaining in the workforce.
“Very often the family caregiver gives up chances of promotion, they often go from full-time to part time, and they have less of an opportunity to save for their own retirement,” said Barbara Kim Stanton, state director of AARP Hawaii.
To alleviate some of the financial burden associated with family caregiving, the legislation will provide services worth up to $70 a day for a maximum of 365 days to qualified family caregivers.
The Executive Office on Aging, an arm of the state Department of Health, is working on the establishing guidelines and requirements for the program.
Caregivers wouldn’t be receiving help in the form of a voucher or cash payment. Instead, after an application is assessed by one of the state’s area offices on aging, the kupuna care program would cover services worth up to $70 per day. Those services could include transportation and adult day care, and meals could also be provided.
“We’re trying to make sure we have specific contracts and guidelines in place like the eligibility for the caregiver, outcomes for the program and how we’re going to collect the data,” said Caroline Cadirao, grants manager for the Executive Office on Aging.
Some basic qualifications for family caregivers would include a minimum of 30 working hours outside of caregiving per week, resident or legal alien status and evidence that they provide regular care for a relative 60 or older.
Cadirao said that the office hopes to have the program functioning by next January or sooner.
“We’re a very small office with a lot of responsibility,” Cadirao said.
Advocates say state support for kupuna caregivers is long overdue in Hawaii, where 16.5 percent of residents are over the age of 65, and the average nursing home has expenses that exceed the national median by more than $45,000 a year — in addition to often having lengthy waiting lists.
“Hawaii’s senior population is growing three times faster than every other state in the country,” said Maui Sen. Roz Baker. “We know the need is there, the resources have not always been.”
Representatives of the Hawaii Appleseed Center for Law & Economic Justice testified during the session that the state’s already gray population is getting older: “By 2020, nearly 300,000 people will be age 65 or older in Hawaii. Because the demographic makeup of our state is changing, we need to change the way we provide care for our kupuna.”
Trisha Kajimura, executive director of Mental Health America of Hawaii, cited the heightened emotional duress that comes with family caregiving in an interview.
“When people are under that high level of stress it can affect their sleeping, cognition, relationships and ability to do things outside of their caregiving responsibilities that are necessary in everyday life,” Kajimura said.
According to a study done by AARP, 55 percent of family caregivers reported being stressed emotionally because of caregiving responsibilities and 34 percent experienced health problems.
Lilinoe Smith, who lives on Kauai, said in her testimony that her reasoning for supporting the act is simple: “Our kupunas cared for us. Now it is time for us to care for them.”
Baker said the program has the potential to improve the state’s health care infrastructure by attracting more qualified service workers for the program.
“(Businesses) who are already bonafide will have an incentive to expand,” Baker said.
The Executive Office on Aging was directed to use the entirety of the allocated funds for services, meaning none of the $600,000 could be used to hire people to help with planning and implementing the program.
EOA has a staff of about 16 employees, and seven of them are working on guidelines and requirements for the Kupuna Caregiver program in addition to their other responsibilities.
The fact that officials say the program is the first of its kind in the country makes the task more difficult.
Still, the EOA was able to submit a draft of the guidelines and rules for the program to the Attorney General’s office and submitted a request to Ige to release the funds shortly after the act was signed.
The money has not yet been released.
“Nothing can be done until you get the money, and if (the governor) has not released the money yet, this is really late,” said Stanton of AARP Hawaii. “And that’s problematic.”
Clementina Ceria-Ulep was president of the FACE organization in 1996 when community members started talking about how to help kupuna family caregivers. She said that while the program’s current goals and funding represent “a great start,” much more needs to be done.
“I think we wanted something much more comprehensive,” Ceria-Ulep said. “Something that would assist all caregivers whether they were working or not. Also it’s not only the old who need long-term care, we have veterans who have suffered from injuries and people who were permanently injured as a result of car accidents.”