This article originally appeared in Honolulu Civil Beat. Read it there.
“We’re all of us imagining that it isn’t going to be us … (but) if we live long enough, we will be disabled.”
This line from Toni, a family caregiver in a new documentary called “CARE,” playing in Honolulu on Nov. 11, really struck a chord for me. As a Hawaii state senator, I’m all too aware of both the challenges and opportunities that living longer brings. Hawaii has the longest life expectancy and fastest aging population anywhere in the United States.
Systemic inequality is highlighted in “CARE,” where we are invited into the lives of four care workers and their clients, seeing the poignant bonds they form and the beauty and importance of the largely unseen world of home-based care.
These inequities embedded in our care infrastructure are not new. Our seniors and people with disabilities have always struggled to get the support they need to remain at home where they want to be.
Care work, which is predominantly done by women of color, has never been highly valued in our economy. This documentary, like our nation’s changing demographics, exposes gaps that are relevant for every one of us, and the chance to build a new vision of care that supports and empowers women and communities of color — and, in doing so, elevates all of us.
And in many ways, the Aloha State has been ahead of the curve in confronting the changing realities of families like Peter and Toni’s, and in starting to address these systemic challenges.
For decades, advocates have been pushing for more support for caregivers and long term care. I remember serving on the Executive Office on Aging Policy Advisory Board for Elder Affairs in the late 1990s with pioneers like Shim Kanazawa who made it their life’s work to help the most vulnerable in our community and those who care for them, and in late June of this year, our governor signed a law to create the country’s first program of its kind to help working caregivers and their families.
The Kupuna Caregivers assistance program will allow family caregivers, the vast majority of whom are women, to receive a benefit of up to $70 per day to help them stay in the workforce while caring for their kupuna, or elders, at home. This modest benefit would serve several purposes: it can give working caregivers the extra assistance they need to keep their job, allow older adults to live at home with dignity and independence, and, for example, could be used to hire a home care provider for a few hours a day. It is a step towards doing right by the fastest-growing workforce in the nation, home care providers.
The truth is, most of us want to be there for our loved ones. When faced with a choice between caring for your mom after a bad fall or keeping your job, I think many would choose our family.
But too often that choice is impossible — our families need our daughters, wives or granddaughters’ income to keep a roof over our heads and food on the table. Family caregivers are not asking for someone to take over all aspects of caregiving; sometimes they just need that extra bit of assistance to be able to balance care responsibilities and work responsibilities. This legislation keeps with our tradition of families caring for one another as they get older, while making sure that no family member must choose between their job and their parent’s care needs.
When I was just starting out in my career, I wrote a guidebook for seniors focused on helping them live independent lives through the use of assistive technology. Much of the book was getting them and their families to accept that at some point, we all need help, so let’s be prepared.
Still, nothing could prepare me for when our own family needed help. When someone you’ve known all your life suddenly doesn’t recognize you, and can’t remember day to day tasks. We understand caregiving first hand, and like so many families, we know all too well what a cruel disease Alzheimer’s can be.
In Hawaii, we value our kupuna, and we want to support families who are caring for their loved ones. I am proud that our deep-rooted cultural value of caring for our kupuna has extended into the public sphere.
We need more laws like the Kupuna Caregivers Program across the country because it’s an example of a bill with heart, one with a more holistic, realistic, and contemporary view of families’ needs and experiences.
I know our country can do better because Hawaii is doing better. And I am grateful for films like “CARE” to sound the call for new solutions and more states to follow.
“CARE,” directed by Deirdre Fishel and produced by Tony Heriza, will be screening at the Hawaii Pacific Gerontological Center in Honolulu on Nov. 11 at 9 a.m., and will be followed by a panel of four local family and professional caregivers. Registration is free; RSVP by contacting Sherry Goya at 722-8487 or firstname.lastname@example.org.