Nearly all Americans have been, will be or currently are caregivers to an adult who is ill, disabled or frail. In 2014, about 43.5 million family caregivers provided care valued at $470 billion, assuming just minimum wage. Yet public policy always has ignored long-term care and family caregiving, even as the number of disabled elders is rising rapidly and the availability of relatives able to provide personal care is falling.

Determined to force policymakers to attend to the issues faced by family caregivers, and to recognize the vital role they play in long-term care, the Altarum Institute’s Center for Elder Care and Advanced Illness launched the Family Caregiver Platform Project in 2015.

The project was a grassroots effort to raise awareness of caregiver issues among hundreds of political leaders through pushing to get some of those issues onto state political party platforms. These platforms are official, written documents that express the values and priorities of the party. They usually are updated every four years during the run-up to a presidential election. These platforms are important because they influence the priorities of political leadership and hold them accountable to issues that formally have been identified as priorities by local party leaders and rank-and-file members.

Before launching the project, research on state party platforms and resolutions found that only the Hawaiian Democratic Party had passed a state resolution in 2015 containing language about caregivers and long-term care. This finding was surprising given the number of Americans who are affected by this issue, and the substantial voting block they represent.

In an effort to include language about caregivers on party platforms across the country, Altarum’s Family Caregiver Platform Project targeted Republican and Democratic parties in all 50 states and the District of Columbia. Upon determining that 75 of the 102 state parties formed a party platform in 2016, prior to the presidential election, the project created a timeline of key dates for each state’s party amendment process. The project also determined three distinct ways for citizens to contribute to the process and started a website to facilitate communication. While researching the platform development process for each state party, the project unexpectedly became aware of party resolutions and bi-partisan legislation, which created other avenues to connect with state political leaders.

To galvanize family caregiver advocates in each state, the project formed partnerships with 14 national caregiver and aging services organizations. In addition, the project organized email and Twitter campaigns to recruit volunteers. The website showed potential planks that volunteers could choose from and adapt and also monitored progress in each state.

As of September, the Family Caregiver Platform Project concluded with great success. Volunteers submitted proposals to 29 state parties in 22 states. Family caregiver language was added to eight state party platforms, one state party resolution, two bipartisan legislative resolutions and the Republican and Democratic national party platforms. The project demonstrated the effect citizens can have when the political process for input is open and inclusive. Hundreds of political leaders had to become familiar with at least some of the caregiver issues that will be so important soon.

In the upcoming decades, we will see tremendous growth in the number of seniors with disabilities, chronic illness and frailty. They will need support from a variety of institutions, from senior living and long-term care facilities to community organizations that help with everyday needs of aging elders. Policies to support family caregivers will be essential to achieve person-centered goals of care. Family caregivers also will become a major force to ensure sufficient planning and funding for other facility-based and home- and community-based services.  

As we come around to the next round of elections, consider elevating caregiver issues alongside industry issues. Partnering with the large voting block that caregivers represent would greatly expand the awareness and effectiveness of advocacy for responsible and reliable long-term care services and financing.

Ben Scribner, MSN, RN, of the Altarum Institute Center for Elder Care and Advanced Illness, is a critical care registered nurse with a master’s degree in health policy and nursing, focusing on community-based services for individuals with serious illness.

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