Annette Dung, 74, has been a caregiver for most of her adult life.
Recently she was helping her 81-year-old sister-in-law, Billie, who uses a walker, get to the adult day care program at Maluhia nursing home. Next she headed up several floors to visit her bedridden 100-year-old mother, Lily Young, who has been living at the facility for three years.
Dung, a retired Hawaiian Airlines chief agent, has been a caregiver to her parents, husband, in-laws and sibling.
"Your own health suffers from it — not only your physical health, but your emotional, spiritual, mental state," Dung said. "You’re really not yourself anymore because you’re at the beck and call of your loved one."
Dung is among the growing number of Hawaii residents — many of them seniors themselves — caring for the elderly, whose population is increasing at an alarming rate. The number of residents 65 and older in Hawaii is projected to more than double to 403,370 in 2040 from 198,094 in 2010, according to the latest state projections.
That’s why state officials are seeking ways to provide long-term care services for all Hawaii residents. A feasibility study is underway for a long-term care insurance program that will likely be a controversial issue in next year’s Legislature.
"Insurance is something that nobody, absolutely nobody, wants," said Dr. Lawrence Nitz, a University of Hawaii political science professor who is conducting the study. Lawmakers commissioned the study in 2013, and Nitz is set to present his findings in the next legislative session. "You don’t want to pay for the collision insurance on your car, but when your car gets smashed, you want the benefit of getting it fixed."
One option is that all residents would pay into a long-term care fund and, at a certain point, be able to draw down a limited amount of benefits. Another alternative being studied includes just those in the labor force paying into the fund.
"The Legislature stipulated looking at something targeting working people in Hawaii," Nitz said. "The other consideration would be, Are you leaving anybody out? You have to make a decision as a policy how much is reasonable for a state to commit and how much is reasonable for citizens to commit. You have to propose a way to pay for it."
Nitz is presenting options for a long-term care insurance plan in August to the Kupuna Council, the coordinating group for the Kupuna Care social services program, and the state Executive Office on Aging’s advisory board.
After age 65, Medicare provides up to 100 days of long-term care benefits for rehabilitation, say if a beneficiary breaks a hip. Long-term care coverage under the proposal would kick in before a person becomes eligible for Medicaid, the government insurance program for low-income residents with less than $2,000 in assets.
The state program would help families before they become indigent, Nitz said.
"The goal is to help that family bridge the process of providing care. We don’t want them to become poor enough to get Medicaid," he said. "We are all human. We have an obligation to plan for ourselves. We can’t assume our kids are going to get a house three blocks away and can walk over and take care of grandma. Our kids will get a job 3,000 miles away. In reality we can’t say we are a village anymore."
In 2001 Hawaii’s first lady Vicky Cayetano was the main public policy advocate for a proposed tax to help finance a long-term care program for disabled residents. The proposal, which lawmakers ultimately shot down, would have required taxpayers to make a monthly $10 "contribution" for a state program, enabling qualified residents to collect $70 a day for a limited number of days to pay for various long-term care services or medications.
Critics dubbed Hawaii’s long-term care proposal "Vickycare," long before President Barack Obama’s Affordable Care Act became known as "Obamacare."
"I always try to keep an open mind, but the general premise is the same as before. This is not something the taxpayers should pay for," said state Sen. Sam Slom, (R, Diamond Head-Kahala-Hawaii Kai). "We have so many programs going now for such a great cost. To think about adding another program is unwise and unaffordable."
Dung, who lives with her four adult children in Manoa, comes to Maluhia every day to visit her mother. She also helps her sister-in-law Billie six days a week. The nursing home provides some respite from the round-the-clock care Dung is used to.
"It’s taking a toll on families," Nitz said. "It is the non-Medicaid families that have the largest readjustment of their lives because the care takes a chunk out of people’s day and may take a chunk out of people’s work life. That’s when it becomes scary."
Some caregivers quit their jobs, substantially affecting their own retirement benefits, or burn through their nest eggs while caring for their parents.
Meanwhile, long-term care costs continue to rise. For many middle-class families, long-term care services are out of reach.
Overall, Hawaii’s long-term care costs are among the highest in the country. The median annual rate for home health aide services in Hawaii was $57,772 compared with the nationwide average of $45,188, while adult day care services cost $19,175 in Hawaii versus $16,900 nationwide, according to Genworth Financial Inc.
"The costs are not going down, but most people in Hawaii would prefer to have care at home," Nitz said. "We don’t have too many facilities, and most people are going to receive care at home and most people want to receive care at home. Over time the family can adjust to providing those services as long as they can, but we really need ways to facilitate the family being able to provide care without seeing disastrous affects on the family."