Almost without fail, when someone describes their experience caring for an older parent, spouse, or another relative, others will chime in with their own stories. Family caregiving is an experience that cuts across every race, gender, ethnicity, and socioeconomic status. With the aging population growing and people living longer than ever, the need for the supports that family caregivers provide will only intensify. Family caregivers are not only critically important for family members receiving support, but for the health care system as well. Indeed, family caregivers’ efforts may contribute as much as 80 percent of the economic value of community-based long-term services and supports for older adults.

With an estimated 18 million individuals across the US currently caring for relatives and anticipated higher demand for caregivers in the future, many states are seeking strategies to address the needs of family caregivers and identify ways to offer assistance, respite, and better care coordination. Through support from the Milbank Memorial Fund and The John A. Hartford Foundation, Jennifer Wolff, PhD and colleagues at the Johns Hopkins Bloomberg School of Public Health recently explored unique approaches that five states are using to assist family caregivers. The resulting paper, In Support of Family Caregivers: A Snapshot of Five States, features promising programs in Hawaii, Maine, Minnesota, Tennessee, and Washington that serve as models to inform other states interested in supporting family caregivers.

State Innovations to Support Family Caregivers

While the five profiled states vary widely in terms of culture, politics, and population, they share a common goal: to help families dedicating large parts of their lives to caring for their relatives and keeping those individuals comfortably at home. The five states feature a mix of strategies, including direct financial support, respite services, training, and other services, as highlighted below:

  • Hawaii: In 2017, the state launched the Kupuna Caregivers program, which offers financial support to working family caregivers. This program, backed by the state legislature, provides working family caregivers with a subsidy of up to $70 per day to be applied toward adult day services, chore services, home-delivered meals, homemaker services, personal care, respite care, or transportation.
  • Maine: The state allocates more than half of its Title III budget to home-delivered and community-based meals, and spends more than three times the national average on access assistance, (i.e., helping people get information about resources available to them). Additionally, since 2000, the National Family Caregiver Support program has provided approximately $150 million annually in grants to state units on aging as Title III-E of the Older Americans Act.
  • Minnesota: Launched in 2001, Minnesota’s Live Well at Home program has an annual budget of nearly $8 million, with $485,000 set aside for family caregiver support projects. More than 700 organizations have received grants through the program thus far, and projects include activities such as opening a new adult day center, piloting new service delivery programs, and starting a volunteer network.
  • Tennessee: Since 2014, the state has required Medicaid managed long-term services and supports plans to assess the needs of family caregivers as part of members’ intake process. The mandated family caregiver assessment includes questions regarding: family caregiver health and well-being; stress and burden; need for training or support; willingness and ability to provide care; and, employment status.
  • Washington: Over several decades, the state legislature has incrementally increased funding for family caregiver support programs and in 2016, the state legislature unanimously passed the CARE Act. As a result, in 2020, Washington State will become one of seven states to offer a paid leave policy for those caring for a sick relative.

Common Themes for State Family Caregiver Supports

In addition to profiling the unique approaches in these five states, the paper describes key considerations for state policymakers seeking effective ways to support family caregivers. These include:

  • Take time to test new approaches, such as providing transportation, hosting educational webinars, or offering more flexible work hours and sick leave policies, as there is value in pilot testing new approaches and iterative refinement.
  • Assess family caregivers’ experience carefully in order to tailor services to the individual.
  • Increase awareness and visibility of family caregivers and encourage caregivers to seek supports on their own behalf.
  • Support the aging network including state and local agencies that provide services and supports to older adults to maximize their collaborative efforts.
  • Focus on cross-sector integration at the local level to align financing, information systems, and service delivery so that services can be coordinated across health plans and service providers.

Spreading Emerging State Best Practices to Support Family Caregivers

The innovative efforts of Hawaii, Maine, Minnesota, Tennessee, and Washington can help spur ideas for other states considering new or improved family caregiving policies and programs. This includes participants in CHCS’ Helping States Support Families Caring for an Aging America, a national collaborative made possible by The John A. Hartford Foundation, Milbank Memorial Fund, the Gordon and Betty Moore Foundation, and the May & Stanley Smith Charitable Trust. Through this initiative, six states — Alabama, Idaho, Iowa, New Hampshire, South Carolina, and Virginia — are identifying new opportunities to meaningfully address family caregivers’ needs. Look for more information from CHCS in the future on the progress of these states’ activities.

By 2050, one in five Americans will be age 65 or older. By investing in strategies to support family caregivers today, states can help ensure that tomorrow’s caregivers have the critical supports they need to assist this growing population in the coming decades.

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Nancy Baum
4 years ago

Are the States of Delaware, Pennsylvania and New York involved? Where can I go for information?