NAC Releases a Series of Vignettes to add The Caregiver Voice to Legislative Narrative

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Just Ahead of National Family Caregivers Month in November, The National Alliance for Caregiving captures dozens of caregiver testimonials to help elevate the seriousness of their condition.

Family caregivers are the backbone of care for people with serious and long-term health conditions in the United States but are not adequately supported by federal, state, and local policies nor by health care providers and employers.

The National Alliance for Caregiving (NAC) working in partnership with the National Academy for State Health Policy (NASHP) and the Administration for Community Living (ACL), has produced a series of vignettes designed to capture the voice of our nation’s caregivers. The vignettes, which were included in recommendations made by the RAISE Council to Congress, bring the hardships and needs of the country’s caregivers to the foreground just ahead of National Family Caregivers Month in November.

The vignettes provide a timely, added layer of social support and recognition for those providing care. Family caregivers, the backbone of care for people with serious and long-term health conditions and disabilities in the United States, are not adequately supported by federal, state, and local policies nor by health care providers and employers. Recognizing, Assisting, Including, Supporting, and Engaging family caregivers (RAISE), leads to better care for older adults, and for children and adults with disabilities or serious health conditions. As an organization dedicated to magnifying the voice for family caregivers, NAC supports the implementation of policies that will reinforce those caring for a diverse range of people across different lifespans and experiencing different health conditions.

The term ''family caregiver'' means a family member or other individual who has a significant relationship with, and who provides a broad range of assistance to, an individual with a chronic or other health condition, disability, or functional limitation. The vignettes presented by NAC offer the experiences of individuals providing care for spouses, children or the elderly, all who have a chronic or serious illness or who are disabled.

One of the 24 caregivers featured in the vignette series, Allen shares his perspective as part of the often-overlooked 42 percent of male family caregivers. According to NAC research, male caregivers are less likely to self-identify as caregivers, and think of themselves instead as fulfilling the role of a “a good husband, son, grandson, or friend.” As such, they often don’t seek community support and are more likely to hide stress. Allen is also a cancer caregiver, who, he pointed out, are often overlooked since cancer itself can be well covered under health insurance. He reflected that cancer caregivers would still benefit from policies that promote respite services, tax breaks, and financial incentives for employers to better accommodate caregivers.

To ameliorate caregiver experiences such as Allen’s, the ACL took insight collected from the vignettes as well as the recommendations from NAC and other nonprofit organizations, and included the following long-term recommendations in a report to the RAISE Council:

  • Expand awareness, outreach and education for family caregivers

Five recommendations that help individuals self-identify as caregivers so that they can get the support they need.

  • Partner with family caregivers in delivery of health care services and supports

Five recommendations to spur health and social service providers to proactively include family caregivers in the care plans for older adults and people with disabilities.

  • Support the diverse and changing needs of family caregivers

Nine recommendations that together will increase system-wide access to flexible person- and family-centered programs, supports and services, including counseling, respite care, peer support, education and practical assistance like transportation.

The Council also recommends strengthening the paid caregiver workforce so that family caregivers have more options when it comes to hiring caregivers to assist them.

  • Ensure financial and employment security for family caregivers

Four recommendations so that family caregivers aren’t forced to decide between impoverishing themselves or providing care to a family member.

  • Learn more about family caregivers

Three recommendations to drive better and more consistent research and data collection to assist in creating policies and interventions that help family caregivers in meaningful ways.

The RAISE Act recommendations represent partnership at its best and is based on both the lived experiences of family caregivers and evidence-based perspectives of leading experts and organizations that support family caregivers.

NAC will continue to work with other non-profits and public-private partnerships to influence change. NAC regularly engages in partnerships with other advocates for the aging and persons with disabilities to find cross-cutting solutions that will support caregiving.

For more information on how NAC supports National caregiving legislation, visit http://www.caregiving.org/advocacy

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About the National Alliance for Caregiving:
NAC’s mission is to build partnerships in research, advocacy, and innovation to make life better for family caregivers. Our work aims to support a society which values, supports, and empowers family caregivers to thrive at home, work, and life. As a 501(c)(3) charitable non-profit organization based in Washington, D.C., we represent a coalition of more than 60 non-profit, corporate, and academic organizations; nearly 40 family support researchers with expertise in pediatric to adult care to geriatric care; and more than 50 advocates who work on national, state and local platforms to support caregivers across the United States. In addition to our national work, NAC leads and participates in a number of global meetings on caregiving and long-term care, working closely with peer organizations in countries such as Australia, Canada, Denmark, Finland, France, Hong Kong, India and Nepal, Ireland, Israel, Japan, New Zealand, Sweden, Taiwan, and the United Kingdom.

Learn more at http://www.caregiving.org.

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