Introducing the Family Caregiver Platform Project


By Anne Montgomery

Now and during the exciting months ahead, people across the country will begin meeting to debate, create, and vote on ideas and proposals for possible inclusion in their state party platforms leading up to 2016. Wherever you live, Altarum Institute’s Center for Elder Care and Advanced Illness (CECAI) hopes that you will participate in this time-honored civic exercise, an opportunity to highlight values and principles centrally important in daily American life. That’s why we invite you to join us as a volunteer in the Family Caregiver Platform Project.

It’s a simple idea: As part of a mission to make it safe to grow old in every community across the country, CECAI is working to get family caregiving issues inserted into the platforms of both major parties in as many states as possible. Party platforms are an excellent way to trigger a bigger conversation about what it means to support a frail, ill, disabled, or otherwise vulnerable family member or friend in your community. Doing so will open up new ways of talking about aging, illness, recovery, and challenges and needs that are common to tens of millions of families. Issues that are salient to family caregivers, such as the need for greater workforce flexibility for those who are both working and supporting someone at home, must be brought to the attention of policymakers in both major parties at the state and local levels and ultimately to both major presidential candidates.

Although family caregivers provide most of the home-based long-term care in the United States, policymakers have so far mostly failed, at the federal, state, and local levels, to engage in serious discussions of what types of supports are most need. Measured in time and dollars per hour of labor provided, the contributions of family caregivers are estimated to be worth hundreds of billions of dollars per year. Family caregivers help preserve Medicare and Medicaid by helping elders remain in their homes and fill in many gaps in the health care system by functioning as care coordinators. They work behind the scenes to drive their loved ones to medical appointments, coordinate services, and help them with daily necessary tasks such as eating and toileting. Many manage medications, and some even provide care at the level of a trained nurse. Often, caregivers have two jobs, one at home and one at the office. While public officials sometimes thank family caregivers for their efforts, they typically provide very little, if any, tangible assistance. We don’t even require the inclusion of caregivers in medical records, let alone provide them with instruction or training for the care they provide!

So what are state party platforms, and where do they fit in?

Every 4 years, citizens in most states come together in counties, precincts, and districts to elect delegates to their state conventions and approve party platforms. Composed of a series of planks, or resolutions, a platform represents that state party’s declaration of where it stands on issues of major importance to residents of that state. Considerable regional variation as to topics exists in platforms, and sometimes there is even variation on a given issue within the same party in different states, reflecting different priorities.

Now that the election season is underway, CECAI invites family caregivers and their supporters all over the United States, who struggle to coordinate fragmented and underfunded services for their loved ones, to reach out and work with the Family Caregiver Platform Project. If you volunteer to speak up at a meeting, to offer a resolution, to tell a story, or to bring friends who have caregiving stories to tell, we will make progress. Getting any language that expresses support for and a desire to assist family caregivers into state party platforms will allow all of us to help families who are selflessly providing the best support that they can to an ill, disabled, or frail elder.

Let’s start the conversation about caregiving at a grassroots level across the country and connect with family caregivers who are isolated, exhausted, and in need of a boost and a helping hand. Together, we can identify and provide a forum for building strong advocates and amplify their voices in their localities. In many cases, attending the local meetings that lead up to a state convention is perfectly possible. CECAI looked into four states—Iowa, Massachusetts, South Dakota, and California—and found out how the process works. Usually, meetings on party platforms (and approval of candidates) are open to every resident in the state who is registered with the party, making it easy to get involved at a community level, where you can have the most impact.

CECAI’s goal is simple: to get family caregiver issues into as many state party platforms as possible before the national election on November 8, 2016. To do that, we need your help. We are looking for volunteer advocates across the country to move the conversation on caregiving forward in their home towns, counties, or states. If you want to volunteer to get caregiver issues on state party platforms in your state, here are some things you can do to get involved. To find out more, visit our website at the link below. We need to tap into volunteer energy and expertise in many states!

  • Sign up for our mailing list by going to
  • Research what supports exist (or don’t exist) for family caregivers in your area.
  • Find out whether there is a local political club in your community that holds regular meetings. If so, attend as many as you can. Talk to people, and tell stories about the caregivers in your life.
  • Find out how the platform committee works for your state, and whether you can attend their working meetings.
  • Raise awareness of caregiver issues. You can use our planks to get started:

Regardless of whether CECAI manages to get family caregiver issues incorporated into multiple party platforms, the many meetings that we attend and people to whom we talk are first-rate opportunities to raise awareness of how to help neighbors and friends and to start conversations that will reverberate outward into county council meetings and state legislatures. Remember: Each person’s voice matters in the political process. Now is the time to start making the case!

Will you volunteer in your state?

6 comments on “Introducing the Family Caregiver Platform Project”

    1. Hi Peg!

      Apologies for the delayed response, but thank you so much for expressing interest in The Family Caregiver Platform Project (FCPP)!

      My name is Davis, and I am a staff member working on the FCPP.

      I would love to discuss with you further how you can get involved with our efforts in NY.

      Please email me at if you are interested in finding out more about the project and ways you can contribute to this exciting work.




    1. Hi Jackie!

      Thanks for the kind words! My name is Davis and I am a staff member working on the Family Caregiver Platform Project (FCPP).

      As to your question about state laws requiring hospital-driven caregiver training, I would point you in the direction of the CARE Act (, legislation designed to better support caregivers as their loved ones’ transition from hospital to home. As part of the law, hospitals are required to educate and train caregivers on medical tasks they will need to perform at home.

      The CARE Act is law in 5 states now, and will be effective soon in a handful more. See this June 15th, 2015 AARP blog post for states’ action on the CARE Act:

      If you are interested in possibly contributing to our work with the FCPP, I encourage you to email me at to discuss ways we can collaborate together on this important project.




    1. Hello Don!

      My name is Davis and I am a staff member working on the Family Caregiver Platform Project.

      I first want to thank you for your efforts as a caregiver. Hard-working individuals like yourself are exactly who the FCPP is aiming to help.

      I would love to discuss with you further how you can get involved with our efforts.

      Please email me at if you are interested in finding out more about the project, and ways you can contribute to this exciting work.




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