Background

Given the burgeoning aging population, states have to find more creative and affordable solutions to long-term care. Family caregiving is a significant issue and is a vital piece in the long-term care services puzzle. Without the countless hours of service that family caregivers provide, the nation's long-term care system would collapse. In recognition of their contributions and to support caregivers, the State needs to determine caregivers' needs and priorities and, more importantly, develop a system to meet their needs.

To assist states in meeting this need, the Administration on Aging of the U.S. Department of Health and Human Services has developed and established an important program called the National Family Caregiver Support Program ("NFCSP"). The enactment of the Older Americans Act Amendments of 2000 (Public Law 106-501) establishes this new program. The NFCSP calls for all states, through their Area Agencies on Aging, to provide basic services to caregivers, such as respite and counseling

Each State Unit on Aging is charged with the responsibility of developing this statewide system of support for caregivers. Federal funds are allocated to Hawaii , but these funds are all contracted to the Area Agencies on Aging for services. States are not allowed to reserve any of the money for administrative purposes under federal guidelines, but must contribute a 24% match toward the program from state and local sources.

The Caregivers Resource Initiative ("CRI") project was started as a result of these new demands placed on the states by the federal government to develop support systems, services, and products for caregivers.

Objectives

The CRI project was developed to support and enhance caregiver support efforts at the local level by partnering and collaborating with various stakeholders in the community to develop caregiver resources and support statewide. While the NFCSP served as the catalyst for the CRI project, it is not directly related to it in terms of services.

The goal of the CRI project is to build a statewide system of support and services for family caregivers. When we use the term "family caregiver," we are referring to anyone who is providing unpaid assistance to an elderly person 60 years or older, or any grandparent who is 60 years or older who is caring for a dependent grandchild who is under 18 years old.

To accomplish our goals, we concentrate our efforts on the following:

1. Strengthening Communication

• We publish Family Caregiver , a quarterly newsletter that is distributed to family caregivers and organizations that have an interest in supporting family caregivers. The newsletter is a way to disseminate useful information to family caregivers statewide, and features such items as local upcoming events, support group information, helpful tips, caregiver stories, county information, caregiver polices, and medical information.
• We developed a comprehensive website devoted to caregiver information on a timely basis, aid in the cohesion of family caregivers statewide, and assist individuals through each stage of their role as a family caregiver. The site has unique features such as a chat room and bulletin board to seek advice, vent, discuss issues, and gain emotional support; a statewide caregiver calendar of events in the community; and a legislative section with links to Hawaii 's legislation that directly and indirectly affect family caregivers.
• We attend caregiver support groups. Participation at both formal and informal support groups allows us to share what the CRI project is doing and where we're headed, and to get feedback on our deliverables and products. By speaking directly with caregivers, we have a mechanism to not only get information out to family caregivers, but also, a means to receive direct feedback.
• To celebrate National Family Caregiver Month in November 2003, we coordinated, with the help of the Department of Health Communications Office, a mass media campaign targeting the general public, the business community, and healthcare professionals. Caregiver stories were pitched to broadcast and print media, and articles were published in monthly professional organization newsletters. Additionally, Governor Linda Lingle signed a proclamation proclaiming November as Family Caregiver Month in Hawaii .
  
  2. Expanding our Networks

• We started the Hawaii Family Caregiver's Network ("Network"). The purposes of the Network are to provide a coordinated means to transmit information to family caregivers on a number of issues such as caregiver services, tips, legislation, and training opportunities; to provide a coordinated means for family caregivers to comment or respond to family caregiving needs; and to help researchers gather information and statistics on Hawaii 's family caregivers. On occasion, Network members are asked to voluntarily participate in focus groups, surveys, and questionnaires. There is no cost to become a member, and as a benefit of joining, you receive the Family Caregiver newsletter. The Network is the first statewide coalition in Hawaii made up entirely of family caregivers, and has been expanded to over 900 caregivers in October.
• Closely related to the expansion of the Network is the development and growth of a coalition of organizations that are interested in supporting family caregivers. In our efforts to coordinate a comprehensive support system for family caregivers, we involve organizations that are seemingly unrelated but whose constituents are facing the challenges of caregiving on a daily basis. Such organizations include the county area agencies on aging, state agencies, communities of faith, health care professionals, the business community, disease-specific groups, women's groups, ethnic and cultural groups, the media, legal groups, unions, advocacy groups, veterans groups, end-of-life groups, policy makers, and researchers/educators.

3. Policy Development

• We aim to enhance policies that directly and indirectly affect family caregivers. We have researched other states' legislation, policies, and programs to help us determine what can be replicated in Hawaii given our current structures, support systems, services, and state budget, while hopefully avoiding some of the mistakes that other governments have made. We tap into the Hawaii Family Caregiver's Network to get feedback about proposals, because if we're trying to design policies to help caregivers, we need to hear from caregivers. Additionally, we continue to educate policy makers and the general public about family caregiver issues.
  
  4. Assessing Hawaii 's Family Caregivers

• When the CRI project first started, not much information about Hawaii 's family caregivers was available upon which to base statewide program strategies. Therefore, the Executive Office on Aging ("EOA") contracted with the University of Hawaii 's Center on Aging ("COA") to conduct the 2002 Statewide Survey on Caregiving. The purpose of the survey was to assess the demographics and needs of Hawaii 's caregivers and to examine the effects of caregiving on caregivers and their families.
  

What's Next?

We will continue to focus our efforts on strengthening communication, expanding our networks, developing policy, and promoting research. However, we will also concentrate on:

Building Caregiver Educational Resources. We have been awarded a grant from the Centers for Medicare and Medicaid Services to develop and distribute a Hawaii Family Caregiver Kit that provides information on local services and resources that will help in their role as family caregivers, and to provide practical information to support caregiver needs and ease caregiving burdens. Additionally, we are looking at different funding sources to d evelop and implement a "train the trainer" curriculum to sustain educational training opportunities for family caregivers.

For more information about the Caregivers Resource Initiative, please call 586-0100 or e-mail caregiver@mail.health.state.hi.us .

 

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