Across every state, from Maine to California, an estimated 18 million individuals provide vital care to older family members who need in-home assistance, yet there are few systematic supports available to assist this critical — and generally hidden — workforce. What makes the lack of systematic supports even more problematic is the fact that family caregivers often provide this care at significant personal expense, often losing wages, draining savings, and putting their own health aside. The care that family caregivers provide often keeps individuals out of hospitals and long-term care facilities — thereby benefiting state budgets — but can be unsustainable for families desperately trying to make ends meet.

In January, the Center for Health Care Strategies (CHCS) convened a meeting of six states — Alabama, Idaho, Iowa, New Hampshire, South Carolina, and Virginia — that are seeking to advance state-based strategies to support family caregivers. Through the Helping States Support Families Caring for an Aging America (Family Caregiver) initiative, supported by The John A. Hartford Foundation, Milbank Memorial Fund, the May & Stanley Smith Charitable Trust, and the Gordon and Betty Moore Foundation, CHCS is helping these states identify ways to better address the challenges of an aging population. Although approaches will differ from state to state, the below priority areas that emerged at the recent meeting are broadly applicable, in particular the need to break down siloes across state agencies.

Key State Priority Areas for Assisting Family Caregivers

  1. Seek Multi-Agency Solutions. When it comes to addressing an issue as complex as family caregiving, one state agency, organization, or office should not be expected to tackle all the facets of the problem. Yet, the traditional mindset within many agencies is to “stay within your lane.” As a result, several state agencies — including Medicaid, aging, human services, and others — are often involved in siloed activities with similar goals. Real opportunities exist for states willing to explore what types of work is going on down the street, in another agency, or another part of their state. With that in mind, states participating in the Family Caregiver initiative are using a multi-agency, collaborative approach to address workforce supports. Many states are also inviting representatives from legislative branches and community organizations to gain buy-in at all levels. These partnerships are beginning to yield rich and thoughtful discussions and provide states with new perspectives on maximizing cross-agency opportunities to support family caregivers.
  2. Identify Opportunities to Align Community Resources. Regardless of geography, resources, and politics, states face many of the same challenges in aligning resources to support family caregiving. Oftentimes, states have multiple Area Agencies on Aging (AAAs) with varying levels of resources and staffing constraints that can lead to gaps in services, or they may have differing programs that make it difficult to streamline efforts statewide. States participating in the Family Caregiver initiative will benefit from the broad and diverse perspectives of their aligned multi-agency teams to identify collaborative solutions. 
  3. Support More Consistent Access to Respite Care. Similar to AAAs, states find that the quality and level of access to respite care — whether it is provided at an adult day center or in the home — may differ depending on an individual’s zip code, and would like to move toward more streamlined, equitable, and comprehensive policies and programs. 
  4. Gather Data to Tell A Story About Family Caregivers. Family caregiving touches individuals from all geographic, socioeconomic, and racial/ethnic groups. Given this population’s extremely broad demographic and social parameters, states struggle with identifying who family caregivers are, and what supports are most needed. This information is critical to providing an accurate, compelling story when trying to communicate the importance of family caregiving to state legislators and other stakeholders. States in the Family Caregiver initiative are seeking to learn from each other about data practices, and strategies for developing and disseminating messages that resonate to advance this important work. Developing new methods of assessment and better understanding their own family caregiving landscape will help states better target programs and resources to the communities that need them most.
  5. Align Family Caregiving Goals with Broad State Policy Objectives. Even if states have all the ingredients needed to push new initiatives forward, they still face a complex state policy environment when it comes to the family caregiving population. For example, states may be: (a) in the process of expanding Medicaid; (b) developing or rethinking managed long-term services and supports programs; (c) reorganizing agencies or departments; or (d) adjusting to new elected officials, administrations, and state legislative bodies. In other words, states are juggling many priorities, and it can be difficult both to make the case to focus on family caregiving and allocate resources to specific issues within this broad space, when there is work to be done in many important areas.

Looking Ahead

Family caregivers are an essential, yet often undervalued, resource in addressing the needs of the nation’s growing older adult population. It is estimated that by 2030, 20 percent of the U.S. population will be age 65 or older, and those 85 and above is set to double over time, placing increased strain on already limited caregiver supports. States participating in the Family Caregiver initiative are eager to learn from one another and develop sustainable mechanisms to identify and acknowledge the value of this important workforce. CHCS is working with the participating state leaders and elected officials to advance cross-sector opportunities to streamline procedural bureaucracy and identify innovative policy alternatives to support family caregivers.  Stay tuned for additional resources from CHCS that will distill lessons from the Family Caregiver initiative and help inform other states looking to support older adults and those who care for them.

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4 years ago

I lived with and was a caregiver for my mom, with Alzheimer’s and other health issues. Being a mom, I also had to earn wages in order to not be financially dependent on my mother. So, I cared for mom 24/7, worked from home during the day and NEVER had any respite. For a while, she attended Sr. Day Care, but again, I worked from home. So, her being gone for a few hours (hours of operation 9-3) in a day did nothing to help me regroup. It wouldn’t have been useful at all if I worked outside the home… Read more »

4 years ago

I am an only child. My parents live in another state 2 1/2 hrs away. I’m caring for them from a distance. Unfortunately I’m not in a position to work a full time job because I’m back and forth with grocery shopping, doctors appointments, etc. is there any resources available to supplement my loss income? This has taken a toll on my financial being. Thank you.

5 years ago

States should also look at the success of the Arkansas Community Connectors program, involving community health workers (CHWs) who helped caregivers through connection to community resources and showed impact on total cost of care.

5 years ago

I called my insurance about my son getting paid to help me, because I cannot stand up for more then three minutes. He lost his job about six months ago, it was him or my husband and we rely on my husbands income. My insurance said there are no programs like that unless you have Medicaid.

Mary Jo
5 years ago

Hopefully these states and others will look at data of family caregivers for children, such as Deb and myself. Many of the challenges are shared, but may have different potential options for support. I urge your group to widen the net. Thanks.

5 years ago

I moved to NC from a state that used residential service waivers to support families who kept loved ones at home. So while I had nursing for my son for 12 hours a day, a service not available in NC, I was also paid for the other 12 hours since my son requires 24/7/365 care. Be nice if there was more consistency from state to state about how the waiver is administered, and how parents/family caregivers are supported!