| Aging & Disability Issues 2016
A Guide for Hawai‘i’s Legislators, Organizations & Citizens
Introduction & Overview 3
Kupuna Care, ADRCs, Fall Prevention & Healthy Aging Partnerships 4
Alzheimer’s Disease and Related Dementias 7
Family Caregiving Issues 8
Long-Term Care Services & Support & Related Legislative Proposals 11
The University of Hawai‘i Center on Aging 14
Information, Education & Research Resources 16
About the Hawai‘i Family Caregiver Coalition, the Hawai‘i Pacific Gerontological Society, the Disability and Communication Access Board, and the Maui County Office On Aging.
The Hawai‘i Caregiver Coalition
As caregiving touches everyone, the mission of the Hawai‘i Family Caregiver Coalition is to improve the quality of life of those who give and receive care by increasing community awareness of caregiver issues through continuing advocacy, education, and training.
Over the years, the Hawai‘i Family Caregiver Coalition has supported our community by sponsoring the following projects:
• Holo Imua Kakou Legislative Reception
• Family Caregiver Awards Program – a joint venture with KHON2’s Elderhood Project
• Aging & Disability Issues report
• Family Caregiver Awareness Day
• Education/Resource Fairs
• Family Caregiver Speakers’ Bureau
• Family Caregiver’s Kit for Businesses
For more information, please contact HFCC at P.O. Box 3088, Honolulu, Hawai‘i 96802, or at firstname.lastname@example.org.
Disability and Communication Access Board
The Disability and Communication Access Board (DCAB) is a governor-appointed state agency whose mission is to promote the independence and civil rights of individuals with disabilities. DCAB supports family and caregiving programs, as well as universal and accessible design to allow individuals to live in the community versus institutional settings.
For more information, contact Francine Wai, Executive Director, at Francine.email@example.com, or at (808) 586-8121. DCAB’s mailing address is: 919 Ala Moana Boulevard, Room 101; Honolulu, Hawai‘i 96814.
Hawai‘i Pacific Gerontological Society
Organized in 1979, the Hawai‘i Pacific Gerontological Society (HPGS) is a not-for-profit organization whose mission is “to provide professionals and students in the field of aging with vital information, workshops, networking, and scholarships to enhance the gerontology workforce; to support the creation of needed policies and programs; and to deliver excellent service to the aging population in Hawai‘i and the Pacific.”
If you are interested in pursuing this mission, you are invited to join the Hawai‘i Pacific Gerontological Society. Please visit the Hawai‘i Pacific Gerontological Society online at www.hpgs.org or mail your inquiry to: P.O. Box 3714, Honolulu, Hawai‘i 96812.
The Maui County Office on Aging
The Maui County Office on Aging (MCOA) takes the lead role in aging issues on behalf of older persons in Maui County. As the designated lead agency at the local level, MCOA promotes and protects the well-being of elderly individuals in Maui County.
For more information about MCOA, please call Deborah Stone-Walls, Director, at (808) 270-7774. MCOA’s mailing address is: 2200 Main Street, Suite 547; Wailuku, Hawai‘i 96793.
Aging & Disability Issues 2016
Kevin Dusenbury, Jr.
Anthony Lenzer, PhD
Eldon Wegner, PhD
Authors of personal stories acknowledged with respective stories where known.
HFCC Board of Directors
Cullen Hayashida, PhD
Anthony Lenzer, PhD
Felicia Marquez-Wong, LSW, QCSW, CT
Eldon Wegner, PhD
Introduction & Overview
Aging & Disability Issues 2016 is the 11th annual publication that offers an overview of legislative issues dealing with aging, disability, caregiving, and long-term care services and support in Hawai‘i. The purpose of this report is to call attention to the priority issues that deserve the serious attention of our lawmakers, advocates, and the public. It is a joint project of the Hawai‘i Family Caregiver Coalition (HFCC), the Policy Advisory Board for Elder Affairs (PABEA), the Executive Office on Aging (EOA), the Hawai‘i Pacific Gerontological Society (HPGS), the Hawai‘i Disability and Communication Access Board (DCAB), the Hawai‘i State Department of Health, and the Maui County Office on Aging (MCOA). Their support is gratefully acknowledged.
Aging & Disability Issues 2016 has 8 sections:
Section 1 offers an overview of the report, as well as an introduction of some general observations of the political and economic changes in Hawai‘i in 2015.
Sections 2 through 6 describe the priority issues for the Legislature in the 2016 session as designated by the major groups that advocate for the frail elder and disabled populations and their caregivers. These sections explain why these are important issues and offer background information concerning them. These five sections also discuss the specific bills that address priority issues and their status at the time this report was written.
Section 7, the conclusion, provides a brief summary, as well as a look ahead.
Section 8 contains a list of information, education, and research resources relevant to aging and disability issues that may be helpful to those seeking additional information and education on these topics.
In addition, personal stories from caregivers regarding the issues they face and the importance of public policies in enabling them to care for their loved ones can be found throughout the report. These stories convey the emotional trials and rewards experienced in caregiving, and describe the difficulties any of us could experience when faced with aging or disability. The stories provide a human face to legislative issues by illustrating how they are embodied in the very human experiences of individuals and families.
The Political Context of 2016
Two thousand sixteen is a year to call attention to the needs of our elderly and disabled populations. At the same time, we must acknowledge that challenges are ahead. The economic recovery, both nationally and in Hawai‘i, has continued to progress. Accordingly, more resources are available to continue building a safety net of services and financial assistance to support the vulnerable. At the federal level, the Administration on Community Living has continued to channel resources into elderly and disabled services, and the Veteran’s Administration has launched aggressive new support for the aging veteran population.
However, the working relationship between Democrats, including the President, and Republicans who continue to control both the House and the Senate, remains less than friendly. The Federal Older Americans Act authorization expired in 2011, and the Administration on Community Living is proceeding on a year-by-year extension. Republicans have expressed an intention to address a re-authorization, but it remains stalled in Congress.
The Executive Office on Aging continues to work with public and private agencies with innovative efforts to restructure the service delivery system and to develop more efficient operations by adopting data systems that enable them to target resources to the greatest needs. Governor David Ige and the State Legislature have generously supported innovations such as the development of Aging and Disability Resource Centers (ADRCs) by county. ADRCs have improved access to services, enabling persons to obtain appropriate services in a timelier manner, resulting in reduced costly episodes such as hospitalizations, emergency room visits, and nursing home placements, and in other ways have shown themselves to be very cost-effective.
The Governor’s top priorities include education and housing. Other State priorities include transportation and fighting the current dengue fever outbreak. Despite the huge funding that these priorities require, the Governor is determined to preserve the safety net of services for our vulnerable populations.
In this election year, candidates at all levels of government should be asked for their commitment to the expansion of services to the rapidly aging population.
Kupuna Care, ADRCs, Fall Prevention & Healthy Aging Partnerships
In our rapidly aging society, a wide range of services has evolved to keep older people healthy, active, and where they would most like to live, i.e., in their own homes. Many of these services were created by federal and state agencies. Some evolved at the local level, either through private or public entities. Much of the funding for these programs comes from a combination of federal and state resources, although in Hawai‘i, county governments also provide funding. This section will discuss four such programs:
1. Kupuna Care
2. Aging and Disability Resource Centers (ADRC)
3. Fall Prevention Programs
4. Healthy Aging Partnerships.
All support the major goals identified above. Funding for these programs is contained in two so-called “Omnibus Bills” (HB [House Bill] 1878 and SB [Senate Bill] 2085). These bills contain funding provisions for a number of aging-related programs, including the four described below.
1. Kupuna Care
Established in 1999, Hawai‘i’s Kupuna Care program provides long-term services and support to frail and vulnerable older adults who lack access to other comparable services. Kupuna Care services include personal care, chore services, attendant care, case management, housekeeping, assisted transportation, home-delivered meals, and day care programs. With annual base budget funding of $4.85 million, the State has supported services that enable older adults to remain in their homes and communities, delaying premature placement in costly residential care facilities. Annual base budget funding is allocated to the Executive Office on Aging (EOA). The EOA then distributes the funds to county offices called Area Agencies on Aging (AAA), which administer the program in their counties and contract for services with private non-profit and for-profit agencies.
As Hawai‘i’s older adult population increases rapidly with the largest increase being those age 85 years and older, ensuring adequate and economical care in the least restrictive environment is crucial. The EOA’s base budget for Kupuna Care has remained at $4.85 million since 2002, while the older adult population in Hawai‘i has increased significantly. The Ige Administration has included Kupuna Care in its 2016 budget with an increase of $4,145,696 as a supplemental budget request. However, the Kupuna Caucus and senior advocacy groups have requested an additional $5.1 million, and that this amount be added to the EOA’s base budget so that all funds are available on July 1. If appropriated, the additional funding from Senate Bill 2085 and House Bill 1878 would enable Hawai‘i to serve, at minimum, an additional 800 older adults in need of long-term services and support.
2. Aging and Disability Resource Centers (ADRC)
Older adults, people with disabilities, and their families are often unprepared when the sudden onset of a serious health condition or abrupt decline in functioning occurs. Once faced with the need for long-term services and support, families find it challenging to navigate the complexities of care systems. Aging and Disability Resource Centers (ADRC) are designed to simplify the process of obtaining information and accessing support and services. In addition, ADRCs reduce the fragmentation of care systems, recognizing that the care needs of older adults and people with disabilities are often similar. Through a single coordinated system, the development and implementation of ADRCs will ensure access to high quality care through person-centered services, which optimizes choice and independence, encourages personal responsibility, and provides support so that individuals and their families are able to make informed decisions.
ADRCs are an integral component of health and long-term care reform, and essential in the development of effectively managed person-centered service systems. Hawai‘i’s ADRC initiative is administered by the Executive Office on Aging (EOA) and implemented by each of the county Area Agencies on Aging. Improving access to long-term services and support, Hawai‘i’s ADRC initiative is designed to ensure that individuals and their families receive the right services when needed and in the right setting. Through two broad strategies, ADRCs strive to divert individuals from unnecessary and costly long-term institutional care by:
1. Intervening with options counseling at critical pathways; and
2. Expediting the eligibility determination process for publicly-funded long-term services and support.
Since 2006, Hawai‘i has been planning and implementing ADRCs in each county. Through support from federal grants and the Hawai‘i State Legislature, the continued development of the statewide ADRC system has been strengthened. The Ige administration has identified Hawai‘i’s ADRC system as a priority for 2016. If appropriated, SB 2085 and HB 1878 would allocate $1.7 million for the continued development of the ADRC system in addition to the $1.4 million already included within the EOA’s base budget. With additional funding, the EOA and the county Area Agencies on Aging will be able to:
1. Measure the effectiveness of service delivery in order to ensure the best use of public funds;
2. Increase capacity to target effective levels of support to those most functionally and financially in need;
3. Provide comprehensive and individualized service planning to help consumers access the most relevant and useful services and support; and,
4. Manage resources and monitor program quality through centralized data collection, evaluation, and identification of unmet needs
3. Fall Prevention Programs
Falls are among the leading causes of hospitalization and severe injury among the elderly. This often preventable occurrence can seriously affect the quality-of-life for elderly individuals and also impacts healthcare costs for the community at large. The impact of falls and legislative initiatives to deal with the problem are described in Part III, Section 5 of SB 2085:
“The legislature finds that every year in Hawai‘i, on average 85 seniors die, 1,960 are hospitalized, and 8,700 are treated in emergency departments as a result of falls. Falls among the elderly also result in almost $120,000,000 in hospital and physician charges. In recognition of this critical public health issue, Act 153, Session Laws of Hawai‘i 2014, established a fall prevention and early detection services coordinator position within the Department of Health’s emergency medical services and injury prevention system branch. This position enables the Department of Health to support a coordinated statewide approach to prevent and reduce the impact of falls among older adults. Act 153 funded a new position for a fall prevention and early detection coordinator for fiscal year 2014 to 2015…. Falls among the elderly are a significant public health issue. Yet, currently, there are insufficient resources to develop a coordinated statewide approach to reduce and promptly detect falls among the elderly….”
Hawai‘i has a Falls Prevention Consortium which has implemented a number of programs in the past, including: securing/developing a form of tai chi, which can be done in a seated position, and supporting the training of instructors statewide; working with pharmacies, OTs, PTs, and organizations to provide balance screening and medication reviews to prevent falls from occurring; developing a video, public service announcements, and coordinating programming via television and radio to provide public awareness on fall prevention. The $32,000 being requested in the above bills will allow for the further development of fall prevention interventions statewide.
4. Healthy Aging Partnerships
The Healthy Aging Partnership program has two different but related components: Better Choices Better Health – Ke Ola Pono; and Enhance Fitness. Better Choices Better Health, known nationwide as the Chronic Disease Self-Management Program, is an evidence-based program where individuals with chronic medical conditions learn how to better manage their health to improve their quality-of-life. A six week workshop developed and tested by Stamford University, Better Choices Better Health does not replace prescribed medical treatment, but does help people learn skills to manage their health problems and interact with their healthcare providers. These workshops are offered at sites throughout the State. Participants learn such things as how to deal with chronic pain, action planning, relaxation techniques, and exercises for home use. A diabetes-specific program is also available.
Better Choices Better Health is being studied by researchers from the University of Hawai‘i. Preliminary outcome data show that, after six months, participants had a decreased number of visits to physician offices and emergency rooms; were exercising more and had greater strength; and reported fewer symptoms, such as pain, fatigue, and shortness of breath.
Enhance Fitness is a 16-week exercise program that improves cardiovascular fitness, strength, flexibility, and balance. In addition, the program helps build relationships among participating seniors, and creates a friendly exercise environment. Moreover, it has been scientifically tested and has been shown to improve health and reduce care costs among regular participants. These classes are currently offered in the County of Kaua‘i and in Maui County, and in churches, senior centers, and neighborhood centers.
Preliminary studies by the University of Hawai‘i indicate that, by the conclusion of the Enhance Fitness program, participants report fewer falls; an increased number of days of physical activity per week; improvement in measures of physical function; and high levels of satisfaction with the program.
Funding for these programs has expired, and the Omnibus Aging Bills include an appropriation of $485,000 for the Healthy Aging Partnership Program.
Respite For a Full-Time Caregiver
Germaine Kiyomoto Isara is a full-time caregiver to her 90-year-old mother Delma, who had heart surgery 10 years ago, fractured her hip in 2012, has since fallen several times at home, and continues to be prone to falls. She needs round-the-clock care, which Germaine has provided as the only child.
Project Dana volunteers provided home visits and transportation to medical appointments during the period when Delma needed a wheelchair. Currently, Project Dana volunteer Clara provides respite for Germaine twice a month so she is able to participate in the Project’s caregiver support group. Germaine has greatly benefited by attending support group meetings, where she learns about various topics related to being a caregiver. She realizes that she is not alone in caregiving and that caregiving can be emotionally stressful at times.
Delma looks forward to visits with Clara while Germaine is at the support group. They enjoy talking about “small kid time,” food, and Japanese culture, and watch television shows. Visits with Clara provide Delma with laughter and compassionate caring while Germaine takes a breather from her caregiving responsibilities. Clara brings out the “chatterbox in my mother,” says a very grateful Germaine.
Project Dana: Caring for the Caregiver
By Sabina F. Swift
My husband was diagnosed with Alzheimer’s disease (AD) in March 2008. His mother and an older brother both died with AD. Per suggestions by our friends Barbara and Barry Brennan who are both familiar with Project DANA, I became involved with the DANA’s Caring for the Caregiver Support Group (CGSG) in December 2013.
The CGSG is extremely well organized and coordinated. Participants are men and women of different ethnicities and range from new caregivers like me to graduates whose loved ones passed away and continue to share their experiences. The unique combination of providing needed knowledge from known, experienced specialists/speakers (education session), and an open-for-all talk story (rap session) with well-selected relevant topics on providing care to sick loved ones and care of the caregiver in a classroom venue, is extraordinary. Outings and field trips to fun places like museums followed by lunch allow participants to mingle, have time to chat at length with other participants, and fully relax.
James Pietsch, JD, from the UH Law School’s Elder Law Program spoke on legal concerns affecting older persons and their families and the challenges caregivers face in helping parents or a spouse at home and in the community. Recently, Dr. Michael Cheang shared his experiences in caring for his mother, which was complicated by sibling differences and cultural miscommunication. Many other topics, such as long-term care insurance, caregiver nutrition, and end-of-life issues, were taken up with handouts of presentations and a list of resources.
There is one significant takeaway value that stays with me: the friendships forged in the group. I don’t feel so alone, neglected, or forgotten. My fellow caregivers are just a phone call or an email message away. I have become a more knowledgeable and confident caregiver, and even happier. CGSG has been one of the best things that crossed my caregiving journey. Thank you, Project DANA!
Alzheimer’s Disease & Related Dementias
Alzheimer’s disease and related dementias (ADRD) have become a major cause of death in the older population. These patients frequently require extensive care in the home or in an institutional setting. The Hawai‘i Executive Office on Aging published Hawaii 2025: State Plan on Alzheimer’s Disease and Related Dementias to address this critical issue, which may ultimately affect as many as half of the 85 and over population.
The State Plan is a blueprint designed to greatly improve the way individuals with ADRD and their families will live in and be served by their communities. It includes five recommendations, or goals:1
Goal 1: Prevent and Effectively Treat Alzheimer’s disease by 2025
Hawai‘i will seek to expand and support local research efforts, as well as keep local healthcare professionals and the public informed about the most current dementia research, both nationally and worldwide. Hawai‘i’s diverse cultural and ethnic environment can be a laboratory for studies unique to the state, which could contribute to the growing worldwide body of research. Efforts will be made to examine the role culture plays in the perception and care of persons with ADRD.
Goal 2: Enhance Care, Quality & Efficiency
By 2025, primary healthcare providers will be fully engaged in dementia diagnosis and treatment, supported by a clear understanding and availability of care options. Every primary care physician will be trained in memory and dementia screening, and will have access to referral resources.
Goal 3: Expand Support for People with Alzheimer’s Disease and Their Families
Quality, professional healthcare for people with dementia should be balanced with the community support necessary to help caregivers and families who are coping with ADRD. Upon diagnosis, there should be easy and affordable access to a multitude of services and training, including respite, legal and financial counseling, advance care planning, and safety measures.