AARP National President Addresses Hawai‘i Caregiver Conference
Kevin Y. Kawamoto
Special to The Hawai‘i Herald
Gray skies and rainy conditions did not stop the hundreds of people seeking enlightenment from packing the Manoa Grand Ballroom of the Japanese Cultural Center of Hawai‘i on March 24 for AARP’s Caregiver Conference, themed, “Caring for Family, Caring for Yourself.”
The event featured a resource fair in the foyer outside the ballroom. Inside, speakers shared information and insight on a variety of topics. They included Dorothy Colby talks on “Positive Approach to Dementia Care,” Cat Sawai sharing “Body and Brain Activities” and geriatric physician Shari Kogan discussing “The Case for Caring for Yourself: Understanding the Medical Consequences of Caregiver Stress.”
Hawai‘i Sen. Jill Tokuda was presented AARP’s 2017 Capitol Caregiver Award for her work on issues affecting the well-being of older adults in Hawai‘i. “We’re going to keep working together, moving forward into the future,” Tokuda told the audience as she accepted the award. “We’re going to work even harder to make sure that you get the support you need to be able take care of our loved ones.”
AARP Hawai‘i state director Barbara Kim Stanton introduced the day’s keynote speaker, AARP national president Eric Schneidewind, who spoke on “What Family Caregivers Want and How to Help Them Get It.” He highlighted the benefits and features of AARP’s comprehensive caregiving resources website, www.aarp.org/caregiving. Schneidewind said AARP advocates for legislation to support caregivers, such as the CARE Act, which is now law in 39 states, including Hawai‘i. It requires acute care hospitals to provide patients with the opportunity to designate a family caregiver on their medical record; to notify that designated person prior to the patient’s discharge or transfer to another facility; and to offer family caregivers instructions on the medical tasks that need to be done at home after the patient is discharged. He acknowledged Hilton R. Raethel, president and CEO of the Healthcare Association of Hawaii, who was in the audience, for working with AARP Hawai‘i to help pass the CARE Act, which became law on July 1, 2017.
Schneidewind said AARP supports caregivers in the workforce by advocating for policies that “enable caregivers to juggle all their responsibilities.” Two-thirds of family caregivers hold down other jobs, he said, and family caregivers report that the stress of caregiving affects their physical and emotional health, their finances and their jobs.
Moreover, its impact is often harder on women than men. “Sixteen percent of women wind up taking a less demanding job versus only 6 percent of men,” he said. “Twelve percent of women give up work entirely, compared with just 3 percent of men.” The financial consequences of caregiving can be staggering, Schneidewind said.
According to AARP, there are 154,000 unpaid family caregivers in Hawai‘i providing care to their loved ones. Finding ways to support family caregivers is important because long-term care facilities in Hawai‘i are among the costliest in the nation. Schneidewind said family caregivers are an “invisible army,” providing long-term care for Hawai‘i’s elders. But he cautioned that the number of potential family caregivers here and nationally is decreasing due to changing demographics, a trend that will continue well into the future and which must be anticipated through public policies.
A lawyer, Schneidewind came well-prepared with facts and figures, as well as his extensive public policy knowledge. But it was his personal story that moved many in the audience and provided much food for thought regarding conversations with loved ones about end-of-life care and quality of life.
“I have my own story that I’d like to tell you about,” Schneidewind told the audience. “In the late summer of 2010, my wife was diagnosed with a rare and incurable form of cancer and it was projected to be terminal in 18 to 24 months. While she was lucid, we were able to develop and implement a plan for advanced care. It made a tremendous difference to her and to our family.”
The end-of-life care conversation gave Schneidewind’s family a sense of carrying out his wife’s wishes. They considered a range of treatment options and consulted with experts, but the decisions were made by his wife because the conversation had taken place early enough for her to have input.
“My wife was in charge,” Schneidewind said. She decided on palliative care for pain management and expressed her desire to remain in her own home and to be cared for by her family for as long as possible. She was aware of her options, including hospice services, and prepared the necessary documents so that her health care providers would know and respect her wishes for end-of-life care.
“My wife remained in her home, cared for by her family, until the last 36 hours,” Schneidewind said. “She was pain-free and lucid until a few days before the end. Her sense of peace and comfort spared her extended family the emotional turmoil that often accompanies the end of life. Rather than despair, we were lifted by her courage. I’m now honoring her request to tell her story.”
One of the key messages Schneidewind wanted to convey by telling this story was that he and his family were not alone on their journey. Thanks to an array of people and services, “We had the support we needed to provide to my wife in the way that she wanted.”
Schneidewind knows from first-hand experience that “caregiving is anything but easy.” Even if done lovingly, it can be isolating, stressful and lonely, and many caregivers struggle to maintain their physical and emotional well-being while caring for the people they love. This is why AARP has emphasized on providing resources — including education, research and advocacy — to help those experiencing the challenges and opportunities of caring for a loved one.
Reflecting further during an interview with The Hawai‘i Herald, Schneidewind said he is not endorsing any one way of planning for a loved one’s final stages of life. The key objective, he said, is to sit down and have a frank and honest discussion about options. Although his wife chose palliative care, which emphasizes comfort, he said another relative who was diagnosed with cancer decided to pursue more aggressive treatment. There are different paths for different people, Schneidewind said. It is important to understand the various treatment options available and their possible consequences so that decisions can be made at the front end. “Talk to family and friends so everyone is informed,” he said.
While in Hawai‘i, Schneidewind was also interviewed by Hawaii Public Radio. He spoke about a new way for small businesses to help their employees save for retirement. Called “Hawaii Saves,” it would use payroll deductions to help individuals build up a retirement savings account. Although it was not the subject of his speech at the AARP Caregivers Conference, Schneidewind shared some thoughts about the proposed program, which is already in place in Oregon, with the Herald.
“Here’s a startling fact,” he said. “The average family approaching retirement has less than $15,000 in savings. And yet, we go out there and say, ‘Well, we need to save more.’ But what’s the most effective way to save? It’s payroll deduction! Fifteen times more likely to result in savings than any other method. And yet, about half of the workforce in Hawai‘i has no access to a payroll savings plan. The Hawai‘i Saves legislation creates a minimal burden on employers and eliminates the fiduciary responsibilities of employers.”
A bill currently being considered by the Hawai‘i Legislature (SB 2333) addresses this topic. It would “require the Legislative Reference Bureau to conduct a study on the feasibility of implementing a Hawai‘i retirement savings program for private sector employees; to report to the Legislature with its findings and proposals, if any; and, if the results of the study support it, to establish a Hawai‘i retirement savings board to administer the Hawai‘i retirement savings program for private sector employees.”
More research needs to be done before such a program is established in Hawai‘i, but passage of the bill would be a beginning. The measure has been progressing through the Legislature. After passing out of both Senate and House committees, the bill was referred to the House Finance Committee on March 23.
“What we have found is that if every family going into retirement could raise their annual income by $1,000 a year, over 15 years the burden on the state of Hawai‘i would be lessened by about $33 million,” Schneidewind said.
AARP Hawai‘i supports the bill. In written testimony this past January, its advocacy director, Kerry M. Komatsubara, noted that when people save for retirement, they are less likely to rely on public assistance.
“Eight states have already passed legislation that improves workers’ access to a retirement program and 22 more are in progress to help their future retirees,” his testimony said. “In Oregon, the first state to implement a state retirement program for private-sector employees, 1,162 Oregon workers saved $255,721.99 for retirement during the first five months of the pilot phase of the program. Hawai‘i must join in this national effort to identify solutions to help our future retirees to be retirement ready, and AARP Hawai‘i stands ready to work with the Legislature to determine the appropriate details for a Hawai‘i Work and Save program.”
A handful of measures relating to older adults, including SB 2333, are currently seeking funding by lawmakers. These include the Kupuna Care Program, Kupuna Caregivers Program, Aging and Disability Resource Center, Healthy Aging Partnership, among others.
The large turnout for the AARP Caregiver Conference demonstrates that the subject of caregiving resonates with many Hawai‘i residents. They come seeking information and assistance. Solutions to future challenges, however, must come from multiple sectors of society: government, nonprofit organizations, the private sector, faith-based and cultural organizations, and families and friends.
Schneidewind sees public policy and advocacy as important pieces of the solution. “Over the past two years, AARP has been behind the passage of more than 150 state laws to help support family caregivers, with dozens more in the pipeline in the coming year,” he told the conference audience.
“We drafted model legislation on topics ranging from providing tax credits to family caregivers to the ability to use sick leave to care for a healing loved one,” he continued. “Flexibility in scheduling and family leave for caregiving are examples of policies that can enable working caregivers to do all of their jobs. State legislatures from Hawai‘i to New York are stepping up to help employed family caregivers with measures that provide some financial help and workplace flexibility.”
He provided examples of public policies that support caregivers in Hawai‘i and other parts of the nation. He noted, however, that a comprehensive, national eldercare plan is lacking.
“At this point,” he said, “the United States is just not prepared to meet the long-term care needs of our rapidly aging society. AARP believes that we need a comprehensive national strategy to help people remain in their own homes as they get older.”
And so the work continues. Schneidewind’s role as AARP’s national president, a volunteer position, is to help articulate the positions and views of AARP to its members, volunteers and the public. His visit to Hawai‘i, which included a visit with Gov. David Ige, helped fulfill that role. After a distinguished career in law and public service, he travels the country, meeting and talking with people who share his concerns about a multitude of issues relating to older adults and preparing for the future. Although he was a long way from his home in Lansing, Mich., Schneidewind seemed to connect with his Hawai‘i audience: caregiver to caregiver.
Kevin Y. Kawamoto is a longtime contributor to The Hawai‘i Herald.