{"subscriber":false,"subscribedOffers":{}} Strengthening Family Caregiving Policies And Programs Through State Collaboration | Health Affairs
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Strengthening Family Caregiving Policies And Programs Through State Collaboration

Doi: 10.1377/forefront.20201112.860149

November is National Family Caregivers Month, making it an opportune time to focus on how to better support this vital workforce. Over the past five years, the number of adults in the United States caring for a family member or friend who is age 50 or older has increased to more than 40 million individuals. This growing workforce is vital to people who want to remain at home and is valuable to the health care system overall. By helping older adults live at home longer, family caregivers may delay the need for long-term care facility stays.

Family caregiving is worth an estimated $470 billion annually, providing substantial savings to the health care system. Furthermore, family caregivers can potentially improve health care quality and outcomes by reinforcing health care provider instructions for care at home, administering medications, and providing emotional support.

The Toll Of Family Caregiving

This role, however, does not come without strain. Family caregivers frequently take on tasks that professional health care providers or direct care workers would otherwise perform, on top of family members’ jobs outside the home, managing their household chores, and navigating health care benefits for loved ones. The combination of these responsibilities often negatively impacts family caregivers’ physical and emotional health and well-being. Many family caregivers hold full- or part-time jobs, and around half report going to work late, leaving early, or taking time off to accommodate caregiving. Recently, the COVID-19 pandemic has put even more stress on caregivers. Many families sheltering in place with older adults—including those who previously attended an adult day health center, had a home health aide on a daily basis, or may have even left a nursing home to avoid COVID-19 exposure—are now serving as full-time caregivers for the first time, often without supports and training.

Strengthening State Capacity To Support Family Caregivers

To get help for family caregivers at the state level, four funders—The John A. Hartford Foundation, the Milbank Memorial Fund, the May & Stanley Smith Charitable Trust, and the Gordon and Betty Moore Foundation—came together to support the Center for Health Care Strategies (CHCS) in launching the Helping States Support Families Caring for an Aging America initiative in May 2018.

Over two years, in Phase I, the initiative assisted six states—Alabama, Idaho, Iowa, New Hampshire, South Carolina, and Virginia—in advancing policy and program changes for family caregivers and in learning from each other during the process. Drawing from the states’ experiences, a set of key elements emerged for accelerating state program changes to support family caregivers.

  1.  Prioritize cross-sector engagement. Each state established a cross-sector team consisting of agencies and organizations that did not often partner—including departments on aging, Area Agencies on Aging (AAAs), Medicaid, departments of health and human services, universities, and organizations in the private sector, such as state chapters of AARP and the Alzheimer’s Association. This helped break down silos, and states reported being able to do more together than apart. Alabama, Idaho, and Virginia, for example, brought Medicaid and aging agencies together to incorporate family caregiving supports as an integral component across home- and community-based services as opposed to being provided through separate programs.
  2. Identify leadership champions. Teams were strengthened through support from committed state leaders, who provided the political will to elevate family caregiving as a state priority. In Alabama, the speaker of the House—who had personal experience with family caregiving—backed the team. States that secured buy-in from legislative or executive leadership reported a clear relationship between success and leadership support.
  3. Collaborate on shared goals. While competing priorities could be distracting, identifying and maintaining a focus on shared goals among the state cross-sector team members led to less duplication and more creative, collaborative approaches. The South Carolina team had a collective goal of identifying strategies to best reach family caregivers, especially in rural and vulnerable communities, and explored creative outreach solutions, such as distributing information at public libraries and partnering with faith-based organizations.
  4.  Establish robust data collection and exchange. Collecting data can help state leadership and agency staff better understand the role of family caregivers and their value to the health care system. Having meaningful data to share with other agencies, organizations, and stakeholders is also critical when defining priorities. Iowa’s team, for instance, developed a standardized assessment of family caregivers, which was implemented in the state’s six AAAs, allowing for more robust and consistent data collection.

Supporting Caregivers Amid The COVID-19 Crisis

During the COVID-19 pandemic, supporting family caregivers is even more important. Beginning in October 2020, The John A. Hartford Foundation began funding Phase II, with a second set of states (both a subset from Phase I and up to three new states to be selected in early 2021), to advance its work around family caregiving. States will focus on one of four key areas shaped by lessons from the initial six states’ activities.

  1. Strengthening family caregivers’ capacity, including, for example, through use of new technologies, increased access to respite care, and formal training for family caregivers;
  2. Establishing robust data collection strategies to enhance programs or inform policies to support family caregivers (such as family caregiver needs assessments and surveys of program effectiveness);
  3. Building cross-sector partnerships (such as across the sectors of aging, housing, transportation, and health plans) to better support family caregivers’ needs; and
  4. Connecting aging initiatives and family caregiving programs through formal linkages to prioritize family caregiving.

Additionally, with the profound impact that COVID-19 has had on family caregivers in communities of color, participating states will incorporate a focus on equity into their goals. Activities may include, for example, targeted outreach to, and/or a partnership with, community organizations with “boots on the ground” in those communities.

Supporting Caregivers: Moving Forward

Caregiving is a labor of love for many families across the United States. But it is also a challenge for families that are ill-equipped to care for loved ones with complex needs while juggling responsibilities in their own lives. In an unprecedented time fraught with challenges, states are exploring innovative strategies to strengthen supports for family caregivers, part of the “essential workforce.”

Given the enormous budget pressures that many, if not all, states are facing because of COVID-19, several states have affirmed to the CHCS that they remain committed to better supporting family caregivers. It is a classic win-win proposition: Supporting family caregivers is a cost-effective way to both provide care and assist caregivers in helping their loved ones to remain living at home. There is more work to be done, and opportunities are available for other foundations to assist states in augmenting family caregiving supports.

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