by Rani Snyder, Program Director, The John A. Hartford Foundation. This blog originally appeared on The John A. Hartford Foundation website.

Dear Colleagues—

At JAHF we want to know how we can better support family caregivers—the nearly 18 million family members in the United States who provide care to older people who need assistance. They are often invisible members of our health care system who receive little preparation, training, or support. They make it possible for older adults to live in their homes, rather than an institutional setting, for as long as possible—which is what 87% of older Americans want. Yet, many states are not fully prepared to meet the needs of older adults, despite being the primary funders of long-term services and supports. Family caregivers can, and should, be a part of the solution.

Simply put, states need guidance on how to better support family caregivers who are giving their all. There’s no common system for sharing best practices in state and federal caregiving policy.

We’re addressing this gap. Together with our funding partners, the Milbank Memorial Fund, the May and Stanley Smith Charitable Trust, and the Gordon and Betty Moore Foundation, we’ve launched Helping States Support Families Caring for an Aging America, a state-based initiative led by the Center for Health Care Strategies (CHCS) to reshape state policy and practice around family caregiving in this country. Alabama, Iowa, New Hampshire, South Carolina and Virginia have each pledged to learn from each other and identify and implement bold changes.

We’re at the beginning of what promises to be an exciting period of exploration in 2019. But what I find particularly instructive, even before we dive in, is what we’ve already learned about the common areas of need across the five states:

1. States need a clear, uniform roadmap to better family caregiving policies. Although states articulated different goals for improving family caregiving supports, all five expressed an immediate need for standardizing policy and practice across multiple networks of family caregivers and health and social service agencies. We learned that there are good services happening all over these states: respite care for caregivers in one county is strong, for example, while there’s a high number of home health providers in another. However, all of the players aren’t always working together to find a way to offer meaningful services statewide. For example, Iowa shared that while they do have a statewide Family Caregiving Program, it’s implemented through six agencies in different ways, and the very people intended to benefit from the program may be underserved. We therefore determined that one activity participating states could pursue would be developing a unified vision, inclusive of at least one evidence-based policy that could be raised up statewide as a best practice.
2. Family caregivers must be empowered to speak up and be counted. The participating states expressed a common need to better understand exactly how many people are serving as family caregivers, and where. We heard that for a number of reasons—from cultural to personal—individuals serving as family caregivers are often unable or reluctant to share their status. In addition, providers and other stakeholders don’t always ask the right questions so they can be fully aware of the complex caring structures that families often have. By helping participating states pursue solutions for better tracking of caregivers, we can help state agencies, health systems and providers assess and support these family caregivers—resulting in less harm and better outcomes for both older adults and their families.
3. Family caregivers need more hands-on education. Almost half (46%) of all family caregivers in the United States find themselves responsible for a host of complicated medical and nursing tasks on a regular basis—tasks that they were never trained for, but tasks that are nevertheless a critical part of their day-to-day responsibilities as family caregivers. Consequently, states in our learning group will also be able to discuss strategies for providing additional educational opportunities for caregivers, from managing chronic disease to multiple medication regimens.
4. States need creative solutions for respite care, especially in rural areas. Several states shared their concerns about the lack of consistent access to respite care, which allows family caregivers to take a much-needed break from the strain of caring for an older adult with complex medical or functional needs. While respite care is increasingly prevalent in urban centers, shortages of providers in remote areas contribute to the lack of respite care in rural communities. Our team in Alabama, for example, shared that although several state agencies and some churches provide family caregiving programs or support them, demand consistently exceeds services available. In 2013, there were an estimated 761,000 family caregivers in Alabama. By Fiscal Year 2017, the Alabama Department of Senior Services, a front-line state agency, helped fewer than 10,000 caregivers with respite services and education or counseling. Expanding access to these critical services will be central to our implementation agenda.

The common challenges these states face may be daunting, but their commitment is real. Each participant in the learning group is led by a team representing the highest levels of government: senior leadership from the governor’s office and some combination of the state’s Medicaid, aging, health and human services, veterans, and labor departments, as well as state legislators representing budget/appropriations and other key committees.

For the next 14 months our state teams will receive technical assistance from CHCS to develop strategies that support family caregivers—emphasizing the four areas of need that we have learned are critical starting points. At the end of the engagement, we will share promising practices and lessons for other states considering similar programs, amid budget constraints and competing priorities.

I look forward to sharing more of what we learn as this project moves forward. In the meantime, you can receive updates on the Helping States Support Families Caring for an Aging America project by contacting Courtney Roman at croman@chcs.org.

Sincerely,

Rani Snyder, MPA
Program Director, The John A. Hartford Foundation

The opinions expressed in this article are those of the author and do not necessarily reflect those of the Diverse Elders Coalition.