Maui Long Term Care Partnership

For information, contact:
Rita Barreras
808-871-7749
rbarreras@hawaiiantel.net
www.mauilongtermcare.org

Chapter 1: How did this Partnership get started? How are they structured?  What have they been doing?

Chapter 2: What Difference Did the Community Partnership Make Here?

Chapter 1: How did this Partnership get started? How are they structured?  What have they been doing

I. WHY Did the Partnership Happen Here?

The Maui Long Term Care Partnership was established to expand the choices and quality of cost-effective, long term care services on Maui Island at a time when there were no longer any discharge points in the community for people in the hospital needing long-term or supportive-care services. Maui’s first “long term care team” formed in September, 2000 following a Certificate of Need challenge between the island’s only acute care hospital and Hale Makua, home of 362 of the island’s 462 nursing home beds. Kula Hospital, the site of the other 100 long term care beds, joined the early Partnership shortly thereafter. Twenty five staff from 3 facilities worked together to improve their working relationships and developed a standardized admissions form, a shared report on waiting lists, proposals to expand transportation, and workforce education. In November of 2000, the group expanded to include individuals from the provider, consumer, education and government communities, who came together to formally establish the Partnership.

Demographics
Maui is the second largest island within the seven islands of Hawaii and it is home to 118,000 people living in rural and small urban communities. Reflective of Hawaii as a whole, Maui is multi-ethnic, comprised of Caucasians (25%), Japanese (25%), Native Hawaiians ( 20%), Filipinos ( 15%), Chinese (5%), and 1 to 2% from other Asian Pacific Islander and Hispanic cultures.

• Overall, Hawaii’s elderly population is growing much faster than the national average, and Maui’s elder population is among the fastest growing in the state, reaching 14.9% of the island total or 17,508, which is 26% higher than it was in 1990.
• There are 1,600+ elders over the age of 85 and it is projected that between 600 and 1,000 older adults are at significant risk of institutionalization due to frailty and need for assistance.

“Filial piety” and “familism” are strong values in Asian, Pacific Islander and Hispanic cultures. In addition, many families want to keep frail elders at home because the seniors’ income is important to the households. Several trends challenge families’ abilities to provide comprehensive home based care, including: 1) rapid aging and increased frailty of the aging population, 2) lack of a caregiver at home as the expense of living in an isolated and tourist oriented state requires all able-bodied adults to earn wages, and 3) a growing number of retirees without local family.

Learning about the Issues
The Maui Partnership used a “Community Organizing” framework to guide their work, rooted in engagement of community members as equals, empowerment, use of reflection, identification of specific winnable issues, and development of community members’ competence. The resulting strategic plan to improve long term care and support services was driven by the grass-roots-level community involvement of many residents and stakeholders who were deeply engaged in their local community teams.

To understand the issues present on Maui for older adults, the Partnership:

1. Interviewed the Core Leadership Team members about supply and demand issues in long term and support services; about possible solutions they could implement and commitments they could make in information and resources.
2. Conducted 50+ “talk story” sessions with various community groups, provider industry representatives, and representatives of service and educational organizations.
3. Engaged regional community leaders in the strategic plan process both island-wide and in specific regions.
4. Inventoried the key long-term and support services available to residents by payor source and the resources available for improvements in the education, workforce, provider, and support service systems.
5. Reviewed demographic data for Maui and the results of recent surveys.
6. Created a tool kit of products to promote public education and awareness of long-term care issues.
7. Created a focus group/forum process guide to engage the broader community in public dialogue.
8. Synthesized data from the Public Health Officer, Dr. Pang, from Advantage, and from a number of sources to further assess at-risk populations and the need for services.

Findings

• Lack of knowledge about how to find needed supports, especially formal supports, and especially among vulnerable older adults. People were unaware of the differences between programs (Medicaid, Medicare, the Older Americans Act, etc.)
• Lack of preparation for a “personal eldercare future” is prevalent, and the elders describe financial security, healthcare, companionship, ability to chose and mobility as the factors most affecting their quality of life. Older adults and the community at large do not have knowledge of “Maui’s long term care problem” or the age tsunami coming at them.
• More than half of older adults surveyed are living with family, plan to remain in their current residence and expect to receive assistance from family, friends or a paid caregiver.
• Workforce shortages exist as the population needing care grows.
• Medicaid waiver programs are not working well and funding is erratic & inadequate.
• Personal care and chore services have inadequate funding, cannot keep up with demand and face staffing shortages.
• Many programs have extensive waitlists – Meals on Wheels, the dental service vans.
• Shortages of specialized care exist – in dementia care and geriatric mental health, adult day services, care homes.
• Informal caregivers are burning out.
• A backlog of older adults exists in the hospital due to lack of residential and support services in the community.

II. Getting Started: What Vision and Structure emerged?

Vision: “Maui is a place where the spirit of aloha (love) and ohana (family) is the essence of our kupuna (elder) friendly isle.”
Our Mission is to establish and sustain a comprehensive, coordinated home and community–based model of services for all that will foster quality of life and death with dignity.” (2007)

Structure
The Maui Partnership chose to work in a targeted fashion with 6 distinct geographic regions, each of which had their own community team or planning group responsible to develop an “Elder Care Plan for Long Term Care” because each region differed in terms of diversity, isolation, and service availability.

The Core Leadership Team coordinated the Partnership’s work through a topically focused Committee Structure and the Regional Team Structure. (Almost every member of the Core Leadership in this Partnership has direct experience caring for older adults in their own families.) Partnership Committees focused on Workforce Education, Evaluation, Marketing & Membership Services, Referral & Service Coordination, Policy & Advocacy, and Business Research & Development.

Each Community team went through their own priority planning process, participating in local analysis of key issues, barriers and opportunities in their region. All regional/community teams submitted their priorities to the Partnership and then participated in several high energy island-wide planning retreats where they worked to build a common vision and priorities for older adults on Maui. Consumers reported it was the first time many of them sat as equal partners next to elected officials and staff of service agencies. A volunteer workgroup consolidated the emerging priorities and proposed activities and sent them out for feedback, resulting in the final core strategies adopted by the Partnership

III. WHAT: Implementing initiatives to address issues. What did they do?

Goal 1: To improve access to information about long-term care services (including residential & support services, education, training and employment) and availability so that people can make informed decisions.

• The Partnership launched its website (www.mauilongtermcare.org), including a well received on-line and print directory of aging and long-term services.
• A draft training curriculum on aging with aloha and compassionate care for elders was developed and included in the Maui Community College training for the Maui Care Corps starting June, 2008.
• The Partnership is exploring incorporation of the Information system it created into the Aging and Disability center being pursued by the county of Maui.

Goal 2: Increase awareness and knowledge at all levels of society about aging, long-term care and supportive services.

• The Partnership launched the “Aging with Aloha” communications campaign including distribution of flyers, brochures, DVD’s, displays, and many presentations to the public. They recruited an average of 80 volunteers annually for respite services, friendly visiting, etc.
• The Maui Partnership has become a credible source in the community on long term care issues, making presentations before the County of Maui’s General Plan Advisory Committee, the Hawaii State Legislature, the Maui County Council and Mayor.
• Development of a communications protocol is establishing the expectation that elders would receive service on the first call for help (“No Wrong Door”); volunteers are working to secure its adoption universally.
  

Goal 3: Provide education and training to long term caregivers in both informal home based and formal professional situations.

• The Maui Care Corps Initiative was created to establish an organized system in the community linking education and training programs, ranging from volunteers to school children and college students, in an effort to address the worker shortage in services to older adults. The program was designed to identify and recruit volunteers and prospective paid workers, as well as students interested in the fields of health and long term care.
• The Partnership developed, piloted and updated a long term care curriculum in three high schools across the island that is causing students to transition to Maui Community College and other schools to pursue degrees in nursing and programs for certified nursing assistants, medication assistants, or home health aides.
• A training program at Na Hoaloha – Maui Interfaith Volunteer Caregivers is being utilized to recruit volunteer caregivers.

Goal 4: Develop, implement and sustain an organized long term care infrastructure for Maui Island that matches the community’s needs and preferences.

• The Partnership implemented a successful policy and advocacy initiative that led to changes at the state and county levels. A legislative tracking tool was created by a Partner to stay on top of issues.
• The Partnership collaborated with the State Department of Human Services Director to pursue legislative changes that would update building codes in the state, allowing assisted living facilities to operate fully as true assisted living facilities. Testimony was given before a Senate committee in 2007 and the Partnership Project Director served on a state level task force studying building code barriers to assisted living.
• The Partnership also supported an initiative called the “Going Home Program” which resulted in state-wide savings to the Medicaid program. A Partnership member suggested to the State Department of Human Services director that they allow discharges of long-term care clients from hospitals to a more cost-effective foster family setting. Adoption of the idea led to the change of an administrative rule so that Medicaid dollars could follow the client, allowing 700 plus people to return home while saving $70,000 per person.
• Advocacy work helped to secure passage of SCR 144, legislation that set up a task force to review long term care infrastructure needs to support aging in place with Rita Barreras and Ann Trygstad representing the Partnership.
• The Partnership supported much innovation through Regional teams focused on local priorities, including retrofitting homes of elders, recruiting volunteers, creating information resource kits for physicians’ offices and development of housing for middle-income seniors. In East Maui, high school students successfully retrofitted 19 homes and findings were published in the Hawaii

Chapter 2: What Difference Did the Community Partnership Make Here?

The Aging with Aloha Coalition, Maui, Hawaii

An interview between Rita Barerras, Project Director of the Aging With Aloha Coalition; and Phyllis Bailey, Senior Information Manager, National Program Office of Community Partnerships for Older Adults in November, 2008.

What is currently going on at your Partnership? What are you working on? What do you see as key impacts of your Partnership?

• Our transition to a new host agency at the community college has been completed. We officially wrapped up our work under the RWJ funding in April. We did not get the $300,000 originally requested from the county, but we did get $275,000 from county funds, which is remarkable given the economic recession.
• Why did the Partnership get such support? Joanne Johnson, a council person and partner, is an advocate for our Partnership and we have gotten a reputation in town for doing really good things and getting results. We also have a tangible product, the Resource Directory for Older Persons, Caregivers, and Persons with Disabilties, which is being used in all its forms. The County council sees us as doing great things that are making a difference and are worth supporting.
• The transition to the community college is a big change - it is a big bureaucracy. Everything is slower.
  • The coalition is forming a new committee to set up the center of aging excellence on aging with aloha® of which the college will be a part. Rita has facilitated 2-3 sessions to “put meat on the structural bones” of the center. Committee members include the chancellor, core leadership of the Partnership, Tony, some new committee members, regional planning staff, and faculty.
  • We have formally transitioned our name to the “Aging with Aloha® Coalition”.
• We have lots of faith in our regional teams, which are still going strong.
• Hawaii has a tradition of “Aloha Festivals” in regions of the island. So we are proposing “Aging with Aloha sessions/festivals” in our regions (through our teams) and on other islands. Our thinking is that this is a way to do community education, panel sessions, celebrations, and music to honor elders and get information out at the same time.

We recently gave a presentation at the Hawaii Gerontological Society conference. It was the first rollout of the new coalition evolving from the Partnership. In our session, there were four panelists, and people were pleasantly surprised about us. Lots of people talked with us afterwards saying “we want to do what you did on Maui”. One health care agency has some money and may bring us in with Rural Health funding to do technical assistance.

The Keynote speaker there, Sandy Markwood, who was from the N4AA, sat among us and told us she was blown away. She asked us if we had ever applied for the NACO award. It felt great to get this feedback. In her talk, she spoke of planning, implementation and evaluation; and then said she saw us talk about and demonstrate it.

How has your Partnership Changed Over Time?
Overall, the transition to our new form of Partnership is taking longer that we expected.

• We have quarterly regional planning groups meetings now instead of monthly.
• We have had some turnover in people who are part of the Partnership – the agency is the same, but the representative has changed.
• Our new County AAA Director arrived Nov. 10 and speaks of collaboration, so we are hopeful about their involvement.
• People are rotating out of the Partnership because of the natural evolution of careers and interest.
• New collaboration is happening in a couple of regions .
  • In the upcountry region there is a focus on water issues; so it is hard to get other issues in focus – like aging.
  • AARP chapters have also been lining up with our regional teams. AARP chapters might just become replacement regional teams where regional teams are weak.
• We have changed our focus from Long Term Care to what it means to age well and age in community.
  

There are some changes happening in our Partnership committees as well:

• We are changing our marketing to use the “Aging with Aloha”® name.
• We’ve started approaching businesses to underwrite the guide/directory – we will sell ads to support it.
• The new marketing committee members are from direct service organizations and independent living developments.
• Why are they joining? – reputation. Rita asks at meetings how many know of the Partnership and its new name – most do.
• The word is out about us and support from our local newspaper is good.

What Difference Do You Feel has been Made by the Partnership?
Our recently published book about our story tells this too.

• People feel the Partnership has made a difference in the daily life of seniors, especially our Resource Directory for Older Persons, Caregivers, and Persons with Disabilities. They tell us “We know where to go for information and the information is credible & accurate”. We do tell them that the hard- copy information is aging or going out of date, and that they need to go to the website for the latest info. We had 700 hits a month in October, 2008 after starting with 400 first time visitors in January, 2008, with a total of 4400 website hits for the first 3 quarters of the year.
• Partnership enhanced the collaboration that was already existing here on Maui.
• If it had not been for the Partnership (with its staff and RWJ funding), we would not have moved as fast to getting results.
• Staffing made a big difference. The staff shepherd the Partnership. Partnership participants looked to me as a leader. I had a background as the leader of the State Unit on Aging in Colorado. Partners saw Rita as being the “steerer” of things – steering the ship. (Look at the book on the Maui Long Term Care Partnership for more thoughts on the differences that Partnership made.)

Why did this encourage Investment in Partnership?

• We evaluated and demonstrated to the county that investing $20,000 a year over three years for our volunteer training and management initiative resulted in volunteers giving $500,000 of value in support to elders.
• Dr. Pang published an article in the Hawaii Medical journal on the Ramp Retrofitting Initiative, which demonstrated that the fall program saved significant costs in prevented falls and injuries.
• A significant recommendation which was made by a Partnership member, and supported by the Partnership, which resulted in cost savings was the Going Home Program. 50 million in savings resulted after the state accepted the Partnership supported recommendation to allow people on Medicaid in hospitals across the state needing LTC services to be discharged to lower level and lower cost services or settings.
• This initiative saved $70K per person per year and the state now has a “Going Home Plus” Program. The State Department of Human Services director is from Maui.
• In September of 2008, the Partnership member, Ann Trygstad, who made the recommendation, got an award from the Hawaii Gerontological Society for the “Going Home Initiative.”

What Challenges has your Partnership faced?

• In the past our relationship with the AAA could be challenging, but we are optimistic about the recently arrived new director, and the response to our Partnership by the US Director of the N4A.
• We have a very diverse geography, with lots of isolation and separation across regions, which can be challenging for both our regional teams and the Partnership as a whole.

Where is your thinking with regard to sustainability?

• We will keep applying for county money. Joanne Johnson, a Partner on the County council, is fighting for us.
• We have opened up our coalition/Partnership to include persons with disabilities.
• We held a Disability Alliance Legislative Forum with 2-3 speakers and legislators present. They spoke of the Partnership and their knowledge of us.
• Other non-profits were surprised we got funded the way we did.
• We had to let go of one of our staff (a consultant) – so our staff now is Rita, an administrative assistant and some students.
• We will continue to write grants.
• We are looking at other methods of creating sustainable funding. The college has a foundation and we are exploring putting an account together there so we can do direct fundraising. (There is a trust issue between the Partnership and college about whether they would release funds we raise for the Partnership back to us.)
• We sometimes face the challenge of college staff thinking they own us (the Aging with Aloha® Coalition) and can direct what we do.

Are there things the NPO can do to help you at this juncture? Is there anything else you want to tell us?

• Let us more easily plug into the CPFOA website and post items.
• Continue to do letters of support for them when needed
• Send them the “Case for why do Partnership” as we develop more tools. They do have all the documents we distributed at the annual meeting.
• The staff person they laid off is now the director of the volunteer program that was originally a Faith in Action grant. She says she learned grant writing from Rita, so the teaching and learning goes on.

An Idea from Rita:

• “Dear President” Letters to President Obama from the community angle – as the examples in the Aging Today of Oct. 08