The future of long-term care in Hawai‘i has long been the focus of my attention. The problems facing us and suggested reforms were carefully assessed by the Hawai‘i Long-Term Care Commission five years ago.
The 2012 “Long-Term Care Reform in Hawai‘i” report gives a good overview of what we all face:
“The long-term care system in Hawai‘i is broken. Long-term care is expensive and beyond the financial reach of most people. Medicare and private health insurance do not cover long-term care, and few people have private long-term care insurance. As a result, if they need extensive long-term care, they must pay out of pocket…
“Most importantly, the aging of the population guarantees that there will be a much greater need for long-term care in the future than there is now. Between 2007 and 2030, the population aged 85 and older, which has the greatest need for longterm care, will increase by almost two-thirds. There is no way to provide services for this population without additional sources.”
— sourced from the “Long-Term Care Reform in Hawaii,” Report of the Hawaii Long-Term Care Commission, Final Report, Jan. 18, 2012.
This month, we bring together Barbara Kim Stanton from AARP, Terri Byers from the Executive Office of Aging for Hawai‘i and myself to discuss the enormous issues facing our elders.
First, what are the most pressing issues facing our senior community today?
Stanton: Hawai‘i’s biggest challenges are the unmet needs in healthcare and financial security for our rapidly growing ku¯ puna population. Soon, one out of every four Hawai‘i residents will be over age 60.
People overwhelmingly tell us that they want to live independently in their own home or in the setting of their choice for as long as possible. But without an adequate caregiver support system, accessible, affordable and quality healthcare, and the means to pay for necessities while on a fixed income, it is difficult for ku¯ puna to enjoy the retirement they aspire to and deserve.
We must also protect and strengthen Medicare and Social Security and ensure that the parts of the Affordable Care Act that help those aged 50 and older are preserved.
Byers: Perhaps No. 1 is demographics — the fact that we are living longer. Aging adults face financial insecurity — housing, healthcare and prescription drugs, social security, employment — loneliness and loss of independence.
- In advanced age, financial resources may run out if income is inadequate.
- Health deteriorates as we age, which raises costs and leads to loss of independence.
Many of our ku¯ puna live below the poverty line. We know that poverty does not affect senior men and women equally. Women are more likely than men to face poverty as they age. Women may have worked at lower-earning jobs. They may have been absent from the labor market due to childbirth and caregiving, or had jobs that were less likely to have employer-sponsored retirement plans. Couple the lower level of retirement savings and benefits with the fact that women outlive men by five to 10 years. Divorced, widowed and never-married women are especially at risk for poverty. We see particularly high poverty rates in people of color, those in rural areas, as well as lesbian, gay, bisexual and transgender older adults.
There’s another hidden cost to long-term care as working adults who provide intensive caregiving are forced to retire early, work part-time or quit their job to become a caregiver.
In the big picture, a very pressing issue is our Inadequate supply of clinicians and paraprofessionals who are trained to meet the demands of the aging baby boomer population.
Ihara: As publisher of Generations Magazine, I am in the community every day and have access to a lot of information. I speak to seniors daily and they tell me the most pressing issues are the demands of caregiving. Families today are quietly taking care of their loved ones from three to four hours, up to 12 to 18 hours a day and still working full time jobs. So it’s the baby boomers who are providing most long-term care and most of them are mature women caring for their parents or spouse. This critical caregiving may continue for several years or more and all families have to plan for the financial and logistical pressures of caregiving. Rosalind Carter is quoted as saying, “There are only four kinds of people in the world — those who have been caregivers, those who are caregivers, those who will be caregivers and those who will need caregivers.”
“ … without an adequate caregiver support system, it is difficult for kuˉ puna to enjoy the retirement they aspire to and deserve.”
— Barbara Stanton, AARP
What caregiver resources are available out there now for families?
Stanton: In Hawai‘i, each county has an Aging and Disability Resource Center (ADRC). There is one toll-free number to get in contact with your county office. It’s 643-ADRC (2372). AARP also offers educational articles and information to help caregivers at www.aarp.org.
If someone you care for is hospitalized, a new law that AARP Hawaii helped get passed — Hawaii’s CARE Act — requires hospitals to give caregivers instructions on how to take care of the patient when he or she is discharged. When a patient is admitted, he or she can designate a family caregiver, who must be notified before they are discharged or transferred to another facility.
Byers: Family caregivers are the core of our longterm care system. November was National Family Caregivers Month and this year’s theme was especially poignant: “Take Care to Give Care.” The golden rule of taking care of others is to take care of yourself first. Family caregivers must be encouraged and supported to ensure they are taking care of themselves, physically, emotionally and spiritually. ADRC provides help for caregivers.
Options for caregivers can range from informal supports to formal public and private services and supports. In Hawai‘i, family and close friends provide the majority of long-term care. Many people receive care at home from a combination of family, friends, volunteers and paid caregivers. However, some family caregivers may become excessively stretched to the point of burnout or may not have the necessary nursing skills required to care for a family member. When they are unable to provide care, you can count on local community- based programs through your local ADRC, which can assist families by helping them look at various options based on their needs.
Ihara: ADRC helps families navigate the many caregiving options available; however, a new caregiver may not know what resources they will need or when to ask agencies for help. My first suggestion is to attend caregiver support meetings offered by the Alzheimer’s Association (www. alz.org), The Caregiver Foundation of America (www.thecaregiverfoundation.org). I also recommend The Senior Handbook available at America Savings Bank and ADRC (www.ADRC.org). Our magazine has many caregiving articles and resources listed in each printed issue and past issues at our website, www.Generations808.com.
What can families do today to assist their parents as they age?
Stanton: Families need to talk and plan before there is a health crisis. Don’t wait until a fall, accident or bad news from a doctor. Other family members need to know about a loved one’s values and preferences, finances and wishes for care. Putting together a family caregiving plan early can avoid fights and guessing what a loved one wants.
For tips on how to start a conversation and a checklist for your caregiving plan check out the AARP “Prepare to Care” planning guide aarp.org.
Byers: Another strategy is to encourage active and healthy aging, which can improve the physical and mental health of older adults, improve quality of life and maximize independence. Some of the most important behaviors to encourage are: physical activity, a healthy diet, proper hydration, chronic disease self-management and cessation of tobacco/substance abuse.
“ Family caregivers must be encouraged and supported to ensure they are taking care of themselves, physically, emotionally and spiritually.”
— Terri Byers, Executive Office on Aging
Ihara: My best advice to anyone taking care of a loved now is to seek out services immediately. The unfortunate truth is that most chronic health issues progress and get worse. Whether it’s Alzheimer’s disease, a stroke, arthritis or cancer, the family needs to get together with their loved one and plan for long-term care, aging in place, financial burdens and end-of-life options. Planning avoids surprises and problems later on.
How much does a long-term care facility cost?
Stanton: The high cost of long-term care is out of reach for the vast majority of Hawai‘i residents. The median annual care-cost in a nursing home in 2016 was $141,310 for a private room and $129,575 in a semi-private room. Who can afford this?
Further, Medicare does not cover the cost of long-term care beyond 100 days and Medicaid‘s low income eligibility is not easy to qualify for.
What can people do to personally to prepare for long-term care?
Byers: My husband and I anticipated being caregivers for my parents so our family home was built to be completely ADA compliant, with widened doorways, safety features and easy-to-operate faucets, door handles, etc. We also purchased long-term care insurance to offset the cost of daily care. If people think they may need a long-term care policy, they should not wait too long to buy one. Premiums and qualifications are steeper the older you get. In Hawai‘i, only 12 percent of our population has long-term care insurance.
How big of a problem is long-term care really going to be?
Ihara: As publisher and editor of Generations, I have access to a wealth of information. I am always researching aging issues and looking down the road. For many years, I have mentioned my discovery over 10 years ago that the affects of long-term care in Hawai‘i and the mainland will grow to a national crisis. Financing care and the impact of caregiving on families will be one of the major problems we will face in this century. We all know someone taking care of a loved one right now. That person may be us. Tomorrow, we may be the person requiring care and losing our independence. Everyone must personally own this issue and plan ahead for long-term care. Do not expect our government to provide care because as we see now, there are limits to what government can provide today.
The future is often what we make it. Knowing that problems may come up in the future is not a reason to worry, but a motivation to take action. Making a plan with our families and our loved ones is the first step. Later, when illness or frailty catch up with our loved one or us, we will be comforted by knowing what comes next, who to call on and how to proceed. In this case, living well means preparing for the future so we can Live Healthy, Live Life and Live Well!
BARBARA KIM STANTON, AARP Hawaii State Director, overseeing the operations of this advocacy organization for the elderly that has over 150,000 members in Hawai’i. Her experience in executive and fiscal management, government and community relations, and strategic planning and community building — especially in diverse populations — include recovery and reopening of the island of Kaua’i after Hurricane Iniki, a revitalization of Waiki¯ki¯, and development of the Hawai’i Convention Center. She has served Hawai’i and City governments in many cabinet-level positions.
TERRI BYERS, Director of the Executive Office on Aging (EOA) for the State of Hawai’i was vice president of the Healthcare Association of Hawai’i, a nonprofit organization representing Hawaii’s healthcare providers including acute care hospitals, long term care facilities, and home care agencies and hospices. and previously served in various capacities in the State Department of Health, State Department of Health including the Maternal and Child Health Branch, Office of Health Care Assurance, Office of Rural Health, and Planning Office. She was caregiver for her late mom.
