Battle For Long-Term Care Marches On

Kevin Kawamoto

Special to The Hawai‘i Herald

Two bills that would have created a publicly funded, in-home long-term care benefit for Hawai‘i residents have been tabled — at least for this legislative session. But community advocates are vowing to keep up the fight and are already looking to the future in an effort to revive the key components of the bills, which many say could become a model for the rest of the country.

Had they become law, Senate Bill 2478 and House Bill 1885 would have allowed qualified Hawai‘i residents access to a certain amount of money each day for a total of 365 days (not necessarily consecutive days). The benefit amount that was being discussed was $70 per day, which is not enough to pay for long-term care in an institution, such as a nursing home, but enough to pay for basic in-home services and supports, such as personal care or assistive devices that make aging in place safer.

Early in the current legislative session, advocates for this public benefit began keeping a close eye on Senate Bill 2478, titled “Relating to Long-Term Care,” when it was introduced on Jan. 22 by Sens. Rosalyn Baker, Suzanne Chun Oakland, Will Espero, Les Ihara Jr., Clarence K. Nishihara, Brickwood Galuteria and Michelle N. Kidani. (A companion measure, House Bill 1885, was introduced by Reps. Gregg Takayama, Isaac Choy, Richard Creagan, Derek Kawakami, Marcus Oshiro and James Tokioka.) The Senate bill was referred to three committees: Commerce, Consumer Protection and Health; Human Services; and Ways and Means. A public hearing was scheduled for Feb. 10 at the State Capitol.

“Many who need long-term services and supports end up in nursing homes,” noted Terri Byers, director of the state’s Executive Office on Aging, in written testimony for the hearing. “But far more live in their own homes, with loved ones, or elsewhere in communities. We have seen a growing preference among those with disabilities to remain in their own homes, and to stay out of nursing homes for as long as possible. This bill is aimed at making that more feasible.”

Educator and longtime eldercare advocate Anthony Lenzer shared a personal story in his written testimony supporting the bill. He wrote about caring for his wife, who had developed dementia and had become increasingly frail in recent years. Lenzer said his adult daughter, a teacher, helped with her mother’s personal care until she had to return to her teaching job. It then became difficult, if not dangerous, to care for his wife on his own, Lenzer shared.

“Because of balance problems and other physical issues, I was not able to help my wife with her intimate care needs,” Lenzer wrote. “Had I attempted to do so, we might have both fallen, and one or both of us might have suffered serious injury. Therefore, it was necessary to hire a home health aide, who came in for several hours in the morning to assist my wife with these needs. These three hours of very necessary care cost about $70 a day.”

Lenzer said he was fortunate that his wife had purchased long-term care insurance, adding that only about 10 percent of people over 65 have long-term care insurance. The other 90 percent without long-term care insurance have to rely on their own resources. “My wife — and many others — needed this help everyday.” He calculated how much it would have cost to pay for that personal care at home without the insurance: $70 a day multiplied by 365 days out-of-pocket totals more than $25,000 annually.

“How many families in our high cost-of-living state can afford an extra expense of $25,000 a year?” he asked lawmakers.

However, in written testimony, state tax director Maria E. Zielinski voiced “serious concerns” about the bill. If the bill had become law, she said, it would have established a long-term care surcharge of 0.5 percent on general excise tax and use tax. This surcharge would be placed into a long-term care benefits trust, which would be used to pay out the benefits to qualified Hawai‘i residents, as well as for administrative costs. The Department of Taxation would play a key role in the funding mechanism for this benefit.

Zielinski also pointed to problems with the bill’s language and recommended revisions in a number of areas. She noted that certain sections of the bill are not feasible and pointed to other sections with which her department would not be able to comply. Although Zielinski did not explicitly oppose or support the bill, she noted that her department “defers to the Department of the Attorney General regarding the constitutionality of the various residency requirements set forth in order to qualify for the benefits under this measure.”

In written testimony, the private nonprofit Tax Foundation of Hawai‘i raised concerns about the way the benefit

program would be funded, namely, by increasing the general excise tax. The foundation felt the model would increase both the cost of living and the cost of doing business in Hawai‘i and said that businesses “must build the added cost of the additional rate into their overhead and, therefore, it must be recovered in the cost of goods and services they sell.”

Because the GET is a broad-based tax that applies to food, textbooks, clothing, etc., an increase in this tax, the foundation argued, “would have a disproportionate impact on the poor” and “may drive employers out of business, create even more unemployment and stagnate the economy further.”

On the other side of the issue were two organizations that were closely monitoring the bills’ progress at the State Capitol — Caring Across Generations, a national advocacy group, and Faith Action for Community Equity, or FACE, a Hawai‘i nonprofit whose membership is largely from faith-based communities. According to its website, FACE also exists to challenge “the systems that perpetuate poverty and injustice.” The two organizations led the grass roots effort to get a publicly funded long-term care benefits trust fund established in Hawai‘i and have spent considerable time and effort educating the public about SB 2478 and HB 1885.

In one of its educational flyers, Caring Across Generations and FACE explained that the long-term care trust fund would be a universal one, meaning, “We all pay into this program, because we believe in a program where everyone is in and no one is left out.” It would also “create high-quality home care jobs” that are needed “to put compassionate, trained workers in positions that pay fair wages and respect the work they do to care for others.” It also said the program would not “replace the way we’ve always cared for our kupuna [elders]; it just makes it a little easier for everyone to afford the care they need.”

In addressing the funding mechanism — paying for the program with the GET — Caring Across Generations and FACE wrote that the trust fund would require a “sizable investment of resources, and we believe there is nothing more worthy of a long-term investment than caring for our elders. Creating a new funding mechanism is tricky and inefficient; a slight increase in the GET is the most realistic way to help families provide the care that they want to provide.”

Caring Across Generations and FACE sponsored a public Town Hall meeting at Sacred Hearts Academy on Feb. 29 so that the community could learn more about the two bills and ask questions of those who have been championing long-term care this year and in years past.

Prior to the Town Hall, SB 2478 had passed, with amendments, both the Senate Commerce, Consumer Protection and Health Committee and the Human Services Committee, fueling optimism that the bill could be on its way to becoming law this year, the first of its kind in the nation.

However, on the afternoon of Feb. 29, the Senate Ways and Means Committee deferred action on the bill, thus preventing it from moving forward in the Senate. (At the time, however, there was still a possibility that the House bill would survive. Those hopes were later dashed when the House Finance Committee, likewise, took no action on the measure, to be addressed later.)

More than 200 people from all walks of life — high school students to older adults — turned out for the meeting at Sacred Hearts Academy. The event was moderated by Professor Clementina Ceria-Ulep, chair of the Nursing Department at UH-Mänoa and included, as speakers, state Sen. Rosalyn Baker, SB 2478’s lead sponsor; Karen Ginoza, a past president of the Hawaii State Teachers Association; and caregiver Moya Gray.

Ginoza is well known for the role she played as an advocate for teachers. She is not as well known, however, for the role she has long played as a family caregiver. It is a role that continues to this day. She spoke candidly of it with the audience, a story she had not shared publicly until then.

“My father became ill at my college graduation,” Ginoza began, “and was diagnosed with terminal cancer. He asked me to return home to care for him. I knew I couldn’t do it alone, so my oldest brother and I decided that both of us would return home to care for him.”

Ginoza’s brother put his career on hold to become a full-time caregiver while Ginoza became a first-year teacher. Within a few months, however, Ginoza’s mother fell and injured herself, and then Ginoza’s sister returned home because of a mental illness.

“Every day became a challenge as my brother and I cared for my father, my mother and my sister,” she said.

In addition to everything else, Ginoza’s fiancée at the time was deployed to Vietnam. Ginoza wondered whether life could get any more difficult. She said she and her brother took one day at a time. At the end of each day, they would share a bottle of beer, a comment that brought chuckles from the Town Hall audience.

But the mood in the room soon turned serious. “Today, 46 years later, I am a caregiver for this same brother,” Ginoza shared. “He has lived in a care home for over 10 years. I am in close contact with the owner of the care home, see my brother once or twice a week and handle all of his personal finances.”

Her brother’s care, which increases as he ages, is paid for through his personal income and investments. His income is too high to qualify for public assistance. Ginoza, who is now retired, remains connected with the community through an assortment of volunteer work. She wonders about her own future as she plans for her brother’s care. She doesn’t know whether she will end up being his full-time caregiver one day, but she wants to be prepared.

Private long-term care insurance was an option available to public school teachers and their families during Ginoza’s tenure as HSTA president. “However,” she said, “the private long-term care insurance market is no longer an affordable option for many families, and it is time for a universal, public long-term care insurance program to help us provide and receive the care we need.”

Ginoza’s life and engagement with the community would change if she became a full-time caregiver. She acknowledges that her family has the support and resources to care for family members with increasing care needs. But, many other families are not as fortunate, she said.

“We need to have a plan for the future, and these bills [in the Legislature] give us a start,” Ginoza said.

Sen. Baker, chair of the Senate Committee on Commerce, Consumer Protection and Health, provided some perspective on the long journey that a publicly funded long-term care benefit concept has traveled in Hawai‘i. Baker served as a state lawmaker in the 1990s, when the framework for long-term care insurance as a public policy was crafted.

When she returned to the Legislature in 2003, she served on the Senate’s Health Committee. “That year, we passed the financing mechanism that we tried to pass today,” she said. “The program itself was passed in 2002. We waited until the next year to pass the financing mechanism. It passed the Legislature.”

However, then-Gov. Linda Lingle vetoed the bill, and there weren’t enough votes in the Legislature to override her veto.

“That’s how long it’s been,” Baker said, adding it has taken years to get legislators and community members seriously interested in this issue.

Baker also acknowledged the longtime contributions of University of Hawai‘i at Mänoa Professor Lawrence Nitz, “who not only takes care of the intern program that we have at the Legislature, but he has been a tireless, tireless advocate, crunching the numbers, getting his colleagues together, putting [together] all of the PowerPoints, and really providing us with” a publicly funded long-term care plan based on a solid, economically sound basis. Nitz was in the audience at the Town Hall meeting.

Although SB 2478 was off the table at the State Capitol by the time the Town Hall meeting began, Baker was looking to the future. She encouraged the audience members to continue supporting a publicly funded long-term care benefit program and to show legislators the groundswell of support for such a program and how it will not only help with caregiving, but also help the economy as caregivers are able to remain in the workforce, knowing they can afford to pay for some in-home care when they need it.

“It impacts us all,” she said. “We have a solid bill. We have a solid plan.” She acknowledged that it could be tweaked here and there, but her message was clear: Keep trying to get a program like this passed by the Legislature through continued organizing and even greater visibility of support for the program next legislative session.

Moya Gray, a caregiver, was the third panelist at the Town Hall meeting and served as an example of someone who exited the paid workforce to care for a loved one and who now has no income.

“I am a caregiver,” she told the audience. “I used to be a lawyer. I had to give that up when my husband had an accident,” she explained.

Gray and her husband were both practicing attorneys when he was seriously injured in a bicycle accident that left him a quadriplegic. He returned to Hawai‘i after undergoing treatment on the U.S. mainland. Both Gray and her husband left the practice of law. Previously the director of the state Office of Information Practices, Gray now devotes much of her life to caregiving, as do her siblings, who also are caregivers to other family members. At one point, Gray’s mother moved into her home when her care needs increased and there were no other viable options.

Gray spoke about the financial impact of caregiving and how leaving the workforce to be a caregiver can have long-term economic consequences for families, especially in retirement. For example, as a consequence of not having a paid job, Gray pays for an individual health insurance plan that costs $600 a month. “My deductible is quite high, and I do not have drug coverage,” she said.

“I would love to have well-paid caregivers take care of my family so that I could go back to work,” she continued. “Not only would it be healthier for me, mentally, to continue in my chosen career, it would give us continued employment benefits — the medical benefits, the social benefits of being with people. Caregiving at home is a really isolating thing.”

Gray urged continued support for an in-home long-term care benefit program in Hawai‘i. Echoing the sentiments of the other speakers, she encouraged the audience to “get down to the Capitol and make your voices heard.”

“I do not think we can ignore the economic consequences of not paying for a [publicly funded] long-term care program,” she said. “It is too important to this state to ensure that all of its people are taken care of.”

Two additional speakers lent their support to the effort at the Town Hall meeting — former Congresswoman Colleen Hanabusa and former Gov. Neil Abercrombie — both of whom shared their own moving stories that involved caring for close family members. Their stories and the comments and questions from audience members demonstrated that the demands and challenges of caregiving affect people across the social spectrum. The attentive caring for elders in the home cuts across social positions and political power.

In doing background research for this story, it became clear just how lengthy the effort to enact publicly funded long-term care benefit legislation has been in Hawai‘i. In October 2009, Project Dana, the “faith-in-action” program that serves frail elders and the disabled in a variety of ways, celebrated its 20th anniversary. (Karen Ginoza volunteers with Project Dana.) The keynote speaker on that occasion was Dr. Jeanette C. Takamura, a Hawai‘i-born sansei who has been a professor of social work and the dean of Columbia University’s School of Social Work in New York City since 2002. The former director of Hawai‘i’s Executive Office on Aging has a distinguished background in education and public health, as well as in government and public service, having served in the administrations of two U.S. presidents and two Hawai‘i governors.

In her 2009 keynote address, Takamura commended the work of Project Dana and the difference its volunteers have made in the lives of so many people. But she also recalled an effort that began around the same time that Project Dana was created.

“About 20 years ago, about the time that Project Dana came into existence, many of you were involved in

advocating for the Family Hope Program, a program proposed by [Hawai‘i’s] Executive Office on Aging,” said Takamura, who headed the office at the time.

She was referring to the late 1980s. The Family Hope Program proposed universal, comprehensive long-term care for Hawai‘i’s people. Back then, the program had already addressed the concerns about a publicly funded long-term care benefit, which continues to linger today. Takamura said there were provisions in place to discourage benefit seekers from outside of Hawai‘i from moving in to use these benefits. Also, private insurers would be able to offer supplemental insurance benefits.

“There was an opportunity to stimulate the economy, enable formal caregiving services to be reimbursed, and help ensure that family caregivers could avoid placing their own financial futures and their health in jeopardy,” she said.

Takamura said that had the Family Hope Program proposal been adopted, beneficiaries would have been able to get full access to benefits around the year 2000. “Every time I hear about families who have suffered or are suffering, I think about what might have been, and I am deeply, deeply saddened. Saddened beyond words. Each year that I hear that long-term care hearings continue, I wonder how many more years of testimonies are necessary and can be endured.

“This is not a game,” she continued. “Lives are at stake. How much reiteration of the facts must there be? How many more families must suffer?”

That was back in 2009. Contacted this past week in New York City for her thoughts on the failure of SB 2478 and HB 1885 to move forward, Takamura again expressed disappointment.

“It saddens me that so many will suffer because of the lack of political will to keep individuals and families from potentially impoverishing themselves,” she said. “It also means that we will not be able to prevent caregivers from being placed themselves at risk of health, mental health and financial vulnerability.”

Despite concerns about cost, she said that such a program would have a positive impact on Hawai‘i’s economy by creating a “multiplier effect,” whereby “dollars paid to providers would go into the economy and multiply as supplies were purchased, people were hired and we built in an incentive that got private insurance [providers] to offer supplemental insurance” to Hawai‘i residents, and so on.

The journey of “family hope” legislation continues in spirit and collective action. At the conclusion of the Feb. 29 Town Hall meeting, Kevin Simowitz, political director of Caring Across Generations, briefly took to the podium. He told the audience that time was running out this session to get House Bill 1885 (SB 2478’s companion bill in the House of Representatives) moving forward through the legislative process. He acknowledged that legislators have a big job to do of considering which bills to move forward and which ones to hold back, but he added, “We have a job to do, too. It is our job to let legislators know what we want them to do.”

Simowitz asked audience members to contact members of the House Finance Committee, especially its chair, to let them know that House Bill 1885 is important.

Ten days later, however, Caring Across Generations e-mailed a news release to the media. It read, in part, “Thursday, March 10, marks the midpoint of Hawai’i’s legislative session, commonly known as ‘Crossover Day.’ Bills that will progress no further include SB 2478 and HB 1885 . . .”

Obviously, it was not the news that supporters of a publicly funded in-home long-term care benefit program wanted to hear. “Despite enormous community support,” the news release continued, “including more than 1,350 voters who signed a petition of support and 20 faith leaders who signed a letter to the Ways and Means Committee urging passage of the bill, rigorous study and examination and the undeniable need in Hawai’i for this program, some members of the House Finance and Senate Ways and Means committees chose not to allocate resources for an issue that we know is a priority for seniors, caregivers and sandwich generation families.”

Clementina Ceria-Ulep of Faith Action for Community Equity, who moderated the Town Hall meeting, was quoted in the news release.

“Supporting home caregiving means Hawai’i can honor the wishes of our seniors, improve their health and quality of life and help family caregivers afford to keep their loved ones safe at home,” she said. “We thank those legislators who championed this bill, including Senator Baker and Senator Chun Oakland. We will keep working to make support for our kupuna and their family caregivers the law of the land in Hawai‘i, and we hope that Representative [Sylvia] Luke and Senator [Jill] Tokuda will join with us ahead of the 2017 legislative session to agree on a way to finance this important program.”

Kevin Kawamoto is a longtime contributor to The Hawai‘i Herald. He studied gerontology at the University of Washington in Seattle, where he earned his master’s degree in social work, specializing in multigenerational social work.