Imagine if this were you:
Your 85-year-old mother moves in with you not long after your father dies. Soon, she shows signs of dementia and, later, Alzheimer’s.
Between helping care for your mother, make medical appointments and take her to them, provide daycare and access to the Handi-Van, you easily become overwhelmed. Soon you’re using vacation time to be your mom’s caregiver, and then you are asking your boss to reduce your workload to 30 hours a week.
That means less pay. You fall behind on consumer and student loan debt, and then you get laid off. A new part-time job, fortunately, provides you with health care, but then mom has a bad fall and hurts her back. She’s hospitalized for 10 days and then needs a lot of rehabilitative help.
You take more leave time, and you draw on your mom’s savings. But mom needs constant attention, including administering of medications, help bathing and getting dressed. You’re doing all the shopping and cooking. If she falls again, how will you pay for it?
By this time in her personal story, Darlene Rodrigues, a member of Faith Action for Community Equity in Hawaii, is weeping, and maybe you are tearing up, too. But you are a reporter, and the press conference is at the State Capitol, and you have to write down what Rodrigues says next, which is this:
“Caregiving is a marathon. I gave up financial stability for this, to care for her. But society does not value caregiving.”
To put it another way, she suggests, Hawaii does not care for its kupuna. But with new legislation to be introduced this session, that could change.
Rodrigues’ lament, while wholly sincere, is also very much by design.
The press conference, after all, came just minutes before an informational briefing on the proposed bill, in the same spot, played out before a room overflowing with supporters, broadcast by Olelo Community Media, and covered by reporters from Civil Beat, the Honolulu Star-Advertiser, Hawaii Public Radio and KITV.
Behind Rodrigues and two other speakers stood senior citizens wearing blue FACE T-shirts and holding signs that read “We support our kupuna” along with a Care4Kupuna website posted by FACE and Caring Across Generations, a national group whose website warns the following:
“Every eight seconds, another baby boomer turns 65. That’s four million Americans per year, and almost one in five Americans by 2025. By 2050, the number of us who will require some form of long-term care and support will double to 27 million.”
Indeed, to emphasize that and other salient points, a representative from Caring Across Generations flew to Hawaii this week to talk about what’s being described as a public health crisis. The representative, Kevin Simowitz, was the first to speak at the informational briefing.
The orchestrator of all this is Roz Baker, a Democratic state senator who chaired the briefing and who almost certainly will oversee the legislation’s hearing in the committee she chairs, Commerce, Consumer Protection and Health.
What Baker is doing is not new or uncommon. Similar full-court presses sometimes accompany the roll out of controversial, big-ticket legislation.
But this is an unusually thorough and well-coordinated rollout, and Baker — who was already talking about her bill before the 2016 Hawaii Legislature opened Wednesday — clearly feels she will need to marshall whatever legislative and media skills she has honed in the 21 years she has represented Maui in the Legislature.
That’s because Baker’s bill on financial assistance for long-term family caregivers will require something very rare: a 0.5 percent increase in the the state’s general excise tax.
“The demographic makeup of our state is changing, so we need to change the way we provide for our kupuna,” Baker said in a press release. “Hawaii needs a long-term plan for long-term care.”
Baker’s bill has not yet been introduced, and the senator is trying to get colleagues to sign on to it. If it passes, however, it could be a model for the nation, said Simowitz.
He explained that other states are grappling with the same issue and that the federal government has been of little help. Underscoring the significance of the bill, Hawaii has a population that is living longer than in other states.
Baker proposes a long-term care benefit of $70 a day for 365 days (the days do not have to be used consecutively), one that she believes ensures access to basic resources needed to provide care to Hawaii’s seniors and people with disabilities who are cared for at home.
Every person who files a Hawaii state income tax for 10 years could receive the $70, which adds up to $2,100 a month.
If you are Darlene Rodrigues, the caregiver for an 85-year-old mother, you find Baker’s legislation very inspiring. In her case, that could mean being able to pay a qualified caregiver about $20 an hour for a half-day’s work.
The money collected from the tax surcharge would go into a trust fund, one that could not be raided and that would be overseen by an independent board. Annual reports would be submitted to the Legislature for review, and the fund would have to stay solvent — that is, pay out less than it takes in — for 75 years.
Benefit payments would be triggered by meeting a specific level of disability. Baker said the fund is not meant to cover a stay in a nursing home or an assisted-living facility. Rather, it could go to expenses such as hiring home-care aides or offsetting the cost of equipment such as ramps and walkers.
The challenge for Baker is that there are lots of demands on finite revenues at the Capitol. They include a big one from the state teachers union, which is asking for a massive overhaul of the state’s public education system — one ideally paid for by a 1 percent GET surcharge that could bring in $750 million a year.
For Oahu residents, who are looking to see the half-percent GET surcharge used to pay for a rail system extended until 2027, that may be a hard sell.
There is also the desire on the part of the Legislature and Gov. David Ige to pay down unfunded liabilities for state and country workers and retires. Pay raises for many of those same employees loom, as does the need for money to provide more affordable housing and to alleviate homelessness.
As yet, the state’s most powerful lobby for seniors, AARP Hawaii, is not backing Baker’s bill. It is focusing on what’s known as The CARE Act, which would require hospitals to offer after-care training to unpaid family caregivers prior to discharge, training that would be performed when the patient goes home. House Speaker Joe Souki singled out the CARE act in his opening-day remarks Wednesday.
Baker also does not have recent history on her side. Efforts to provide public financing for long-term care date at least to the 1980s, but it has yet to materialize. In 2003, similar legislation passed but was vetoed by Republican Gov. Linda Lingle.
In 2012, the Hawaii Long-Term Care Commission recommended to the Legislature that it support a long-term care education and awareness campaign. Backed by a $500,000 appropriation in 2014, the campaign — scheduled to kick off this spring — will spread the news about such alarming statistics as this one: that 7 in 10 people who reach age 65 are expected to eventually need some form of care.
AARP Hawaii supports the campaign, which is administered by the state Executive Office of Aginghttp://health.hawaii.gov/eoa/.
Marilyn Seely, a past director of the agency, said at the briefing, “I did not expect to still be talking about this in the year 2016. I expected it all to be completed.”
That said, Seely believes this is the year for a care bill to pass, because, as she put it, Hawaii and the country have hit a brick wall. Locally it’s compounded by the fact that more than half of the many people here who live to be 85 and older will be diagnosed with dementia.
Most family caregivers are women; they face chronic stress and harm to their employment status. Backers of the long-term care bill hope that small businesses will recognize how caregiving has a ripple effect and thus will lend their support.
But it’s unclear how a tax hike will go over with groups like the Hawaii Chamber of Commerce, which consistently complains of the burden to small businesses.
Baker is aided in her quest by recent policy research and demographic studies that illustrate the scope of the challenge. Much of it comes from a Long-Term Services and Supports Feasibility Study by the Department of Political Science at the University of Hawaii at Manoa.
At Wednesday’s briefing, Lawrence Nitz, the project’s director, explained that 90 percent of people want to age in their own home, but that Medicaid and Medicare will not be sufficient to cover the potential costs.
To put it in perspective, Nitz said that nursing home or assisted-living care costs around $120,000 a year, something beyond most earners in the state.
Wayne Liou, a postdoctoral economist on the project, said the GET hike was a more sustainable route to pay for long-term care than drawing on payroll or income taxes. He pointed out that one-fourth of the GET comes from visitors to the islands.
Liou also favorably compared the GET surcharge for long-term care to the one levied for Honolulu rail, in terms of its reliability.
But, in an indication of the hurdles Baker faces with her own colleagues — let alone the House of Representatives — Sen. Michelle Kidani reminded Nitz, Liou and Seely that they are not the only ones looking for revenue options. Kidani knows this firsthand, as she chairs the Senate Education Committee and formerly was a vice chair in Senate Ways and Means.
Kidani is also vice chair of Baker’s committee, so her support will be critical. Her concerns about the cost of subsidizing long-term care are shared by another committee member, Clarence Nishihara, who wondered whether the trust fund would balance out.
Nitz said that it would, with the first collections beginning in 2018 and the first payouts coming in 2023. All told, the fund could easily total more than $1 billion annually, more than enough to cover 85-90 percent of what would be needed for payments.
“Hawaii needs a long-term plan for long-term care.”—Sen. Roz Baker
Senate Vice President Will Espero asked if the long-term care program could survive on half the requested surcharge. Nitz said he did not think $35 a day would be as helpful as $70.
Meantime, Sen. Suzanne Chun Oakland, chair of the Senate Committee on Human Services, asked whether Liou had calculated how a half-percentage surcharge would work out for education. Liou said he had not crunched the numbers.
What the long-term care surcharge has in its favor, say Nitz and Liou, is that it actually puts money back into the economy because it is paying for services.
And, as important as public education is to many, long-term care is something that will likely impact the greatest number of people.
Clementina Ceria-Ulep, another FACE member and chair of the UH Manoa nursing department, said she hoped that when lawmakers hear stories like the one from Darlene Rodrigues, they will understand just how real and painful caregiving is.
“In 2016, legislators have a chance of making history,” she said.