Welcome to the Family Caregiver Platform Project

Welcome to the Family Caregiver Platform Project! It is an honor to serve as your National Coordinator. What successes our movement has had have been due to the hard work of volunteers across the United States. Your work has made a difference!

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.

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 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.

Focus on Community Catalyst

The Family Caregiver Platform Project (FCPP) is pleased to have Community Catalyst as one of our National Partners. Working together we can bring about changes to better serve the needs of family caregivers. Community Catalyst is a consumer advocacy organization working in 40 states. Kate Villers, President and Founder of Community Catalyst, says of their mission, “Each state is different, with a different political environment, so there is no single, cookie-cutter approach.“

Community Catalyst’s state-based partners provide leadership to state and local consumer organizations, policymakers, and foundations. Their experts assist state activists with research information, technical support, and political strategies to ensure consumers have a voice in decisions that affect their health. They share our view that community leadership is essential to transform the health care and social services that caregivers depend on.

Community Catalyst ran a guest editorial about the FCPP in the January 14, 2016 issue of their newsletter, The Dual Agenda. The piece by Victoria Walker, MD, explains how the goals of the FCPP overlap with those of Community Catalyst. You can subscribe to The Dual Agenda newsletter at communitycatalyst.org.

If any issue can unite communities across America it is caregiving. It’s easy and fun to bring caregiver issues to the attention of your local representatives. Many states are organizing now in preparation for caucuses and conventions. Go to Find Your State to discover upcoming events you can attend. You can download model language that can be customized for platform plank or resolution submission in your own state.

We urgently need your help. You can make a difference!

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/

Dayne DuVall

“As a caregiver for my father who passed away after thirteen years battling Alzheimer’s disease, I know first-hand the problems and frustrations that families face providing and financing care. Federal and state governments realize this is a growing problem since we all are living longer. It is imperative that family caregivers have a voice in policy decisions so that they know they have access to resources when they need them most.”

“Financial resources are a difficult topic because of budget constraints, but if governments realize that without the contribution of nearly a half trillion dollars annually from unpaid family caregivers they will be forced to find hard dollars to pay for these health care services.”

Dayne DuVall, Chief Operating Officer, National Certification Board for Alzheimer Care

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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