FCPP 2016 Year in Review

by Ben Scribner MSN, RN

The election and inauguration of our nation’s 45th President captured the world’s political attention. As a new administration brings change to Washington, let’s reflect on the success of The Family Caregiver Platform Project, which will continue to encourage bipartisan support for family caregivers.

In an effort to recap what we learned and highlight our success, the Family Caregiver Platform Project submitted a manuscript for publication to The Journal of American Geriatrics Society that will be published in the February, 2017 issue. Here is a recap of our primary findings.

The Family Caregiver Platform Project aims to reach individual volunteers and organizations to raise awareness of family caregivers through the platform process for both the Democratic and Republican Parties. The value of the project is measured not solely in the number of platforms that formally adopt platform language, but also in the dialogue and discussion that advocates and organizations stimulate in a political arena that has historically been silent on caregiver issues. Most state parties update their platforms in Presidential election years, articulating their values and beliefs when national political interest is at its peak.

By September, 2016, many state parties and both the Republican and the Democratic national parties formed platforms. The Family Caregiver Platform Party was widely successful in creating awareness for family caregivers in numerous states across the country.

  • As of September, 2016, FCPP 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 one national party platform.
  • We identified three specific methods by which state parties accept new proposals for their platform: (1) “Bubble-Up” Process, (2) Direct Submission, or (3) Live Testimony. Eighteen state parties received input via direct submission, four state parties received input via live testimony at formal party hearings, and seven state parties received input via the “bubble-up” process.
  • Twenty-three submissions were made for state party platforms, four submissions were made for state party resolutions, and two legislative bipartisan resolutions were developed within state legislatures.
  • Most of our proposals (18/29) were submitted directly by volunteers, while (11/29) were submitted as part of testimony or during local meetings. Six of the eleven live testimony or “bubble-up” submissions resulted in the party adding family caregiving language to their party’s resolution or platform, while only five of the seventeen direct submissions resulted in language added to their party’s resolution or platform.
  • Roughly one-third (10/29) of the submissions were made to state Republican parties.
  • The FCPP project concluded the 2016 political season with submissions to Democratic and Republican national platforms. These submissions were made by The Leadership Council of Aging Organizations, unifying a joint effort of 72 non-profit national organizations, including the FCPP. In the final version of their national platform, the Republican party highlighted “homecare as a priority in public policy,” while the Democratic party included a sub-section titled “Supporting Working Families,” specifically calling for various policies to support family caregivers.

State political parties will continue meeting and discussing their values and priorities in 2017. In 2017, the Democratic parties in Massachusetts and Utah will be updating their party platforms. In addition to party internal work, we expect to see a broad range of legislative initiatives across the country that will affect caregivers at the national, state, and local levels.

Our democracy depends on participation by involved and informed citizens. The FCPP continues to support bipartisan efforts to raise awareness of caregiving as a core family value that can unite all Americans.

[map credit: Center for Elder Care and Advanced Illness, used with permission]

Spencer Blalock, LCSW, BCD, DHA

It is staggering to know that in Mississippi there are between 500,000 and 800,000 caregivers. These are individuals that are often overlooked for their sacrifice and quiet life-saving service. They care for loved ones with no promise of compensation, but based on the goodness of their hearts and a commitment to doing unto others as they would have done unto themselves. In Mississippi alone, each year they contribute over $5 Billion dollars of in-kind care that would have to be provided by institutions, facilities, or other professionals if the caregivers were not in place!

The Mississippi Caregivers Task Force studied the issue of caregiving in Mississippi and completed a report and blueprint for the governor and legislature in late 2014. In 2015, efforts of the Task Force were successful as the Caregiver Act was passed in Mississippi. Another important milestone in 2015 was the creation of the Mississippi Family Caregiver Coalition, a grassroots group whose aim is to engage providers and caregivers in advocacy efforts and pooling of caregiver resources. In 2016, members of the Task Force and Mississippi Family Caregiver Coalition came together to support the creation of the bipartisan Caregiver Resolution, as promoted by the Family Caregiver Platform Project (FCPP). It passed the Mississippi State Legislature unanimously in 2016.

We clearly have a great deal of work to do. We know that each state has different challenges and assets. From a policy standpoint, history demonstrates that three things must converge to make a change: a well-defined problem, an evidence-based solution, and political will of policymakers. When this happens, a policy window opens for a short time. This means that now is the time to frame this issue as a National Crisis in the making and study solutions that will show evidence of substantial impact for supporting caregivers.

I am extremely hopeful for better supports for Mississippi’s and U.S. Caregivers in the coming years.

— Spencer Blalock, LCSW, BCD, DHA, has served on The Mississippi Board of Examiners for Social Workers and Marriage and Family Therapists since 2011. In 2014, Governor Bryant appointed Mr. Blalock as Chair of the Mississippi Caregivers Task Force.


Portrait of Spencer Blalock, LCSW, BCD, DHA
Co-Chair of the Mississippi Family Caregiver Coalition

Photo Credit: University of Mississippi Medical Center (used with permission)

Welcome to the Family Caregiver Platform Project

Welcome to the Family Caregiver Platform Project! It is an honor to serve as your National Coordinator. The hard work of volunteers across the United States on behalf of family caregivers has an impact that we have been able to track through this project.

In 2016 our volunteers made 29 language submissions in 22 states. Language was officially adopted in eight state party platforms, one state party resolution, and two state bipartisan legislative resolutions. Moreover, both Democrats and Republicans included language in their 2016 National Platforms affirming the importance of family caregiving and home care.

State political parties will continue meeting and discussing their values and priorities in 2017. Following the 2016 presidential election, Americans of all parties are more aware of and engaged with political processes than ever. Caregiving is important to American families of all political philosophies. You can ensure that family caregiving issues are included in political discussions in your community and state.

In 2017, the Democratic parties in Massachusetts and Utah will be updating their party platforms. If you live in either of those states contact your state party to find out how you can give input to their platform process. You can read what we know about their processes on their individual state pages. You may also want to pursue having your State Legislature issue a bipartisan resolution affirming the importance of family caregiving, as was done in South Dakota and Mississippi in 2016.

We encourage everyone to read our suggested caregiver platform planks as a source for ideas to advance in your state. Examples of submission language for state party platforms and legislative resolutions can be found on our downloads page.

— Victoria Walker, MD, Chief Medical and Quality Officer for the Evangelical Lutheran Good Samaritan Society

How the National Party Platforms Address Caregiving

The Republican and Democratic parties approved their national platforms at their conventions in July 2016. You can learn more on our pages for the Democratic National Platform and the Republican National Platform.

72 Nonprofit Organizations Call for Caregiving Language

In 2016 the Leadership Council of Aging Organizations (LCAO.org) submitted draft language to the platform committees of both political parties. The LCAO is a coalition of 72 member associations dedicated to preserving and strengthening the well-being of America’s older population. Their recommendations are consistent with the approach the Family Caregiver Platform Project has taken. For example, the LCAO letter has a section titled “Support for Caregiving” that reads, in part:

We are committed to helping family caregivers by developing a long-term services and supports system that both expands access to home and community-based services and ensures a qualified interdisciplinary workforce that is appropriately trained and properly compensated. We believe it is critical to expand federal opportunities to support family caregivers through increasing federal funding for existing programs that help caregivers, including caregivers of people with Alzheimer’s disease and other dementias. We believe it is important to ensure that family caregivers have an explicit role in care plans and the services and supports they need to provide care; resources to alleviate financial hardships and promote retirement security; and access to flexible employment policies. We also believe it is important to encourage the creation of a volunteer “caregiver corps.”

Keep In Touch!

If you want to keep informed about efforts to get family caregiving on political platforms nationally, you can subscribe to our mailing list or send an email message to info@caregivercorps.org. You can make a difference!

About the Family Caregiver Platform Project

The Family Caregiver Platform Project (FCPP) works to get caregiving issues included in as many state party platforms as possible.

The FCPP is a national collaborative effort between major organizations. Together with its national partners, the FCPP encourages nonpartisan grassroots efforts to educate and motivate policymakers to improve state and federal support for family caregivers and older adults. The FCPP works with individual volunteers and organizations to raise awareness of caregiving issues. It doesn’t matter which party you belong to! We care about the issues, not the parties themselves.

During the 2016 political season, many state parties revised their platforms. In 2016 our volunteers made 29 language submissions in 22 states. Language was officially adopted in eight state party platforms, one state party resolution, and two state bipartisan legislative resolutions. Moreover, both Democrats and Republicans included language in their 2016 National Platforms affirming the importance of family caregiving.

During 2017, you can continue to work at the local level to encourage discussion of caregiving issues in your political setting. You can download customizable platform language templates to minimize the effort to prepare submissions to local groups, caucus meetings, city councils, and legislative committees.

To get involved, subscribe to the FCPP update at and read an overview of your state party platform process with key dates. You can send the FCPP an email message at info@caregivercorps.org.

In 2016, the FCPP was supported by a grant from the Lawrence & Rebecca Stern Family Foundation to The Center for Elder Care and Advanced Illness (CECAI) at Altarum Institute, which continues to support the effort on a pro bono basis. The project was also made possible through the Health and Aging Policy Fellows Program, through the generous support of The Atlantic Philanthropies and the John A. Hartford Foundation.

Why Political Platforms Matter

Adopting better policies in state party platforms can be a first step in creating a positive policy climate nationally. A platform is a declaration of where a party stands on issues. Not all parties adopt a state platform. Some adopt party resolutions that are statements of policy, not “platforms,” but that help guide legislative initiatives within the state. Whatever the parties call them, these statements of values are important guidance mechanisms for political action within a state.

Eventually, aging people need improved federal aging policies, not just state-by-state advances. There is a relationship between state and federal policy in which some improvements will be demonstrated first at the state level, and later disseminated nationally. In other cases, federal rule changes will affect caregiving options across many states.

About Caregiving

As millions of us embrace the gift of longer lives in the 21st century, our communities will increasingly need to support their elderly residents so that these residents can age in place and live in dignity. Seven out of 10 of us will need assistance from another person. We will need help with simple activities such as eating, bathing, and moving from place to place. That’s why we need a community that cares.

Unless we act to make home caregiving more feasible for more people, professional care will be the only alternative. Institutional care comes at a high cost, often supported by taxes. Few people would choose institutional care if home care were possible. Allowing people to remain at home for as long as feasible is both more compassionate and more cost-effective.

There are many kinds of families and community needs. Recognizing diversity is important to all of us. The FCPP uses the word “family” to mean all those who are bound to the person who is ill or disabled by friendship, relationship, or law. There are also many ways to improve the lives of caregivers. Options for action vary by state and community.

2015 Submissions

The FCPP had a busy year in 2015. Many volunteers helped to submit language proposals in 2015. Volunteers found that the process was easy and fun. Most parties welcome participation by people within their state and are quite grateful for suggestions.

● The FCPP submitted language to the National Republican Party via the party website in December 2015, with the help of caregiver advocates in New York and Illinois.
● The Arizona Democratic Party received a platform submission in August 2015 and a resolution proposal shortly thereafter.
● The Arkansas Republican Party received a platform submission in December 2015.
● The California Democratic Party received platform submissions in October and November 2015.
● The California Republican Party received a platform submission in September 2015 but subsequently adopted its 2016 platform without including language relating to caregivers.
● The Georgia Democratic Party received a platform submission in December 2015.
● The Maine Democratic Party received a platform submission in December 2015.
● The New Mexico Republican Party received a platform submission in December 2015.
● The Oregon Democratic Party received a platform submission in December 2015.
● The Vermont Democratic Party received a platform submission in October 2015.

Want to Know More?

  • Visit the Family Caregiver Platform Project website at caregivercorps.org.
  • Send an email message to info@caregivercorps.org to learn more about how to get involved.

Improve Quality and Reduce Costs by Supporting Family Caregivers

Supporting family caregivers can reduce the total cost of care for frail elders while improving their quality of life. It’s a win-win situation that’s good both for our hearts and our pocketbooks.

Institutional care, whether in a nursing home or hospital, comes at a high cost often paid for by Medicaid or Medicare.[1] The expense of nursing home care will soon become unsustainable for state Medicaid budgets as our population ages. Seniors over age 65 will double[2] and those over 85 will triple by the year 2050.[3] Supporting family caregivers is one of our best options to keep costs down while helping seniors live independently, which is what most of them want.

We have evidence that supporting caregivers has positive benefits for everyone. For example, a review of research literature provides encouraging indications that supporting people who care for someone with dementia often has positive effects on the care recipients’ behavior, function, and the length of time they remain at home.[4] Interventions adapted to the individualized needs of both dementia patients and their caregivers help to reduce caregiver burden and prevent or delay elders’ institutionalization.[5]

Medicare does not cover the cost of nursing homes. The largest share of Medicare spending is for hospital services.[6] Supporting family caregivers is crucial in that arena too. Family caregivers help elders avoid hospitalization by overseeing physician visits, nutritional needs and medication schedules. Should their care recipient need to be hospitalized, a critical link in transitional care will be the family caregiver, though they are commonly thought of mainly as “visitors” rather than a crucial part of the care team.[7]

Preventable hospital readmissions are a big part of unnecessary medical spending. Hospital readmissions cost Medicare $26 billion annually and $17 billion is considered avoidable.[8] Transitions between care settings are critical points where breakdowns in communication can result in readmission to the hospital. Substantial savings could be realized if hospitals, doctors, and community programs worked together with caregivers to create a clear caregiving plan at the time of hospital discharge.[9]

Simply recognizing the economic impact of family caregiving would help us realize that the care system can’t function without it. About 40 million Americans provide unpaid care for a family member or friend who is ill, disabled or aged.[10] This invisible workforce carries out its tasks as a labor of love, expecting little in return. Family members help with activities of daily living, coordinate health care services and perform complex medical tasks that used to be relegated to nursing. While the sense of connection caregivers provide for loved ones may be priceless, their service has a great economic impact. The hours of care they supply has been valued at approximately $470 billion.[11]

Despite best intentions, caregiving can be daunting, especially when recipients have complex health conditions or cognitive impairments like dementia.[12] In a recent national study examining the experiences of family caregivers of older adults, caregivers reported feeling exhausted, having too much to do, and little time for themselves.[13] One study found that the chief risk of institutionalization is not a decline in the health of care recipients, but a decline in the health of their caregivers.[14] It therefore makes sense, both economically and as an act of human decency, to provide support for caregivers so they can continue to keep their loved ones at home, an option most would prefer.

Footnotes

[1] Reaves, E L, and M B Musumeci. “Medicaid and Long-Term Services and Supports: A Primer.” Kaiser Family Foundation. May 8, 2015. (Accessed November 3, 2015). http://kff.org/medicaid/report/medicaid-and-long-term-services-and-supports-a-primer/

[2] “Administration on Aging: Aging Statistics.” U.S. Department of Health and Human Services: Administration for Community Living. (Accessed August 19, 2015.) http://www.aoa.acl.gov/Aging_Statistics/index.aspx

[3] “Selected Long-term Care Statistics” Family Caregiver Alliance. (Accessed August 19, 2015.) https://caregiver.org/selected-long-term-care-statistics

[4] “Dementia: A NICE-SCIE Guideline on Supporting People with Dementia and Their Carers in Health and Social Care; NICE Clinical Practice Guidelines, No. 42.” Social Care Institute for Excellence. Leicester (UK): British Psychological Society: 2007. (Accessed November 3, 2015). http://www.scie.org.uk/publications/misc/dementia/dementia-fullguideline.pdf

[5] Brodaty, H, A Green, and A Koschera. “Meta-analysis of Psychosocial Interventions for Caregivers of People with Dementia.” Journal of the American Geriatric Society 51, no. 5 (2003):657–664. (Accessed November 3, 2015) http://www.ncbi.nlm.nih.gov/pubmed/12752841

[6] Blum, J. “Testimony on Improving Quality, Lowering Costs: The Role of Health Care Delivery System.” Presentation to the US Senate Committee on Homeland Health, Education, Labor and Pensions, November 10, 2011. US Department of Health and Human Services. (Accessed November 3, 2015) http://www.hhs.gov/asl/testify/2011/11/t20111110a.html

[7] Reinhard, S, L Feinberg, R Choula, and A Houser. “Valuing the Invaluable: 2015 Update; Undeniable Progress but Big Gaps Remain.” AARP Public Policy Institute. July 2015. (Accessed November 3, 2015) http://www.aarp.org/content/dam/aarp/ppi/2015/valuing-the-invaluable-2015-update-new.pdf

[8] Lavizzo-Mourey, R. “The Human Face of Hospital Readmissions.” Health Affairs Blog. March 14, 2013. (Accessed November 3, 2015) http://healthaffairs.org/blog/2013/03/14/the-human-face-of-hospital-readmissions/

[9] Gibson, M J, K A Kelly, and A K Kaplan. “Family Caregiving and Transitional Care: A Critical Review.” October 2012. Family Caregiver Alliance. (Accessed November 3, 2015) https://www.caregiver.org/sites/caregiver.org/files/pdfs/FamCGing_TransCare_CritRvw_FINAL10.31.2012.pdf

[10] Reinhard, S, L Feinberg, R Choula, and A Houser. “Valuing the Invaluable: 2015 Update; Undeniable Progress but Big Gaps Remain.” AARP Public Policy Institute. July 2015. (Accessed November 3, 2015) http://www.aarp.org/content/dam/aarp/ppi/2015/valuing-the-invaluable-2015-update-new.pdf

[11] Reinhard, S, L Feinberg, R Choula, and A Houser. “Valuing the Invaluable: 2015 Update; Undeniable Progress but Big Gaps Remain.” AARP Public Policy Institute. July 2015. (Accessed November 3, 2015) http://www.aarp.org/content/dam/aarp/ppi/2015/valuing-the-invaluable-2015-update-new.pdf

[12] Reinhard, S, L Feinberg, R Choula, and A Houser. “Valuing the Invaluable: 2015 Update; Undeniable Progress but Big Gaps Remain.” AARP Public Policy Institute. July 2015. (Accessed November 3, 2015) http://www.aarp.org/content/dam/aarp/ppi/2015/valuing-the-invaluable-2015-update-new.pdf

[13] Spillman, B C, J Wolff, V A Freedman, and J D Kasper. “Informal Caregiving for Older Americans: An Analysis of the 2011 National Study of Caregiving.” U.S. Department of Health and Human Services; Office of the Assistant Secretary for Planning and Evaluation. April 2014. (Accessed November 3, 2015) http://aspe.hhs.gov/report/informal-caregiving-older-americans-analysis-2011-national-health-and-aging-trends-study

[14] Talley, R C, and J E Crews. “Framing the Public Health of Caregiving.” American Journal of Public Health 97, no. 2 (February 2007):224-228 and corrected 97, no. 3 (March 2007):393, doi:10.2105/AJPH.2004.059337. (Accessed November 3, 2015) http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1781412/

Connie Siskowski

“The job of caregiving youth is to become educated; yet, it is tough to focus in school with the worries of adult-sized family caregiving responsibilities. The American Association of Caregiving Youth (AACY) supports the efforts of the Family Caregiver Platform Project to educate leaders about the challenges children face as caregivers. The AACY encourages public policies that will support these children through high school graduation and help them become healthy, educated, productive adults.”

Connie Siskowski, RN, PhD
President and Founder
American Association of Caregiving Youth (AACY)
aacy.org

Get family caregiving into your state party platform

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