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Mission of the National Respite CoalitionThe Mission of the ARCH National Respite Coalition is to secure quality, accessible, planned and crisis respite services for all families and caregivers in need of such services in order to strengthen and stabilize families, and enhance child and adult safety.The Coalition works to achieve these goals by preserving and promoting respite in policy and programs at the national, state, and local levels.When you join the National Respite Network you are automatically a member of the National Respite Coalition, the Policy Division of the ARCH National Respite Network, and can receive the latest updates on Congressional legislative activity important to respite and the families you serve, as well as information from the states about program implementation. The National Respite Network is a program of the Chapel Hill Training-Outreach Project. |
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FACTS and Talking Points for Respite and Caregiving |
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Outcome Evaluation of the National Family Caregiver Support Program |
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The Administration for Community Living (ACL) released the Outcome Evaluation of the National Family Caregiver Support Program on December 6, 2018.
Key among the evaluation’s findings are important insights into the value of respite in reducing caregiver burden and that education and training services can lead to greater caregiver confidence over time. One key finding regarding respite was that, on average, NFCSP caregivers who received 4 or more hours of respite care per week had a decrease in self-reported burden over time, while the comparison caregivers experienced an increase in self-reported burden. In addition, among caregivers who used NFCSP respite care, as the respite hours per week increased, so did the probability of a more favorable response regarding caregivers' perception that services helped them continue caregiving. Additional data were collected on caregivers’ use and perceived helpfulness of NFCSP respite care. |
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Centers for Disease Control - Caregiving Data from the 2015-2017 Combined National Data from the Behavioral Risk Factor Surveillance System (BRFSS) |
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Valuing the Invaluable: 2019 Update
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In 2017, about 41 million family caregivers provided an estimated 34 billion hours of unpaid care to an adult with limitations in daily activities. The estimated economic value of their unpaid contributions was about $470 billion in 2017.State-by-State Table on the Number of Caregivers and the Economic Value of Caregiving, 2017, click here.
Read the full report.Download the Infographic
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2015 Caregiving in the U.S. 2015 |
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The National Alliance for Caregiving and AARP released the 2015 Caregiver Survey results in June 2015. The survey revealed that an estimated 43.5 million adults in the United States have provided unpaid care to an adult or a child in the prior 12 months. They found that while there is a profile of a typical caregiver, caregivers on the whole are becoming as diverse as the American population and include more men and younger "millennial" caregivers. Still, 85% of family caregivers are not receiving respite. New methodologies were used so comparisons with previous surveys are not possible. While caregivers of children were included in prevalence numbers, these caregivers were not included in any further analyses.
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High Costs of Caregiving for ChildrenFamily-Provided Health Care for Children With Special Health Care NeedsJohn A. Romley, Aakash K. Shah, Paul J. Chung, Marc N. Elliott, Katherine D. Vestal, Mark A. Schuster, Pediatrics, December 2016Many families caring for children with special health care needs at home do so at extreme economic cost. Using data from the 2009-2010 National Survey of Children with Special Health Care Needs, researchers at Boston Children's Hospital found that families caring for 5.6 million children with special health care needs provide nearly $36 billion worth of care annually. The associated foregone earnings were $17.6 billion or $3200 per child per year.
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CAREGIVERS IN AMERICA: Growing Contributions with Little SupportInfographic from National Alliance for Caregiving and NASUAD |
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More on High Costs of Caregiving |
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A RAND Corporation study estimates the value of informal caregiving in the US by friends and relatives of the aging at $522 billion a year. Replacing that care with unskilled paid care at minimum wage would cost $221 billion, while replacing it with skilled nursing care would cost $642 billion annually.
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Four in ten adults in the U.S. are caring for an adult or child with significant health issues, up from 30% in 2010. |
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Caring for a loved one is an activity that cuts across most demographic groups, but is especially prevalent among adults ages 30 to 64, a group traditionally still in the workforce. Caregivers are highly engaged in the pursuit of health information, support, care, and advice, both online and offline, and do many health-related activities at higher levels than non-caregivers. 39% of U.S. adults are caregivers and many navigate health care with the help of technology.
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Respite Cost Savings Fact |
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Researchers at the University of Pennsylvania studied the records of over 28,000 children with autism ages 5 to 21 who were enrolled in Medicaid in 2004. They concluded that for every $1,000 states spent on respite services in the previous 60 days, there was an 8 percent drop in the odds of hospitalization.
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National Respite Coalition Fact Sheets
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RAISE Family Caregiving Advisory Council and Advisory Council to Support Grandparents Raising Grandchildren |
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May 21, 2020 RAISE Advisory Council Meeting |
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ARCH presentation to the RAISE Family Caregiving Advisory Council, ACL, HHS, on May 21, 2020, including respite recommendations for inclusion in the national family caregiving strategy.Watch video of the May 21, 2020, Advisory Council meeting. Meeting Agenda.ARCH proposed the following respite solutions for including in the National Strategy on Family Caregiving |
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February 7, 2020 - NRC comments submitted in response to the ACL Request for Information |
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NRC submitted comments in response to RFIs from the Administration for Community Living to the RAISE Family Caregiver Advisory Council and to the Advisory Council to Support Grandparents Raising Grandchildren, February 7, 2020. |
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Advocacy Tips for Contacting Members of Congress |
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Here's How to TAKE IMMEDIATE ACTION! |
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Make the message personal. Share your personal caregiving story about why respite is so important to you or focus on the need for respite in your state. Share how Lifespan Respite grants have helped family caregivers pay for respite, trained new respite providers, and supported community and faith-based respite services for unserved family caregivers in your state. |
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Tips for a Face-to-Face Meeting with Congressional Members |
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WRITE OR FAX A LETTER TO YOUR MEMBER OF CONGRESS |
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1. AddressThe Honorable (Insert Full Name of Congressman)
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Contact Congress
To contact your US House member, visit here To contact your US Senator, |
NRC LegislativeAlerts and Updates |
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For alerts on Lifespan Respite Reauthorization, visit the Legislative Action Center. |
Lifespan Respite FY 2021 Appropriations |
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NRC's testimony submitted for the record to the Senate Labor, HHS, Education Appropriations Subcommittee in support of Lifespan Respite Care Funding for FY 2021. |
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Bipartisan Congressional Letter Signed by 28 House Members to Appropriations in Support of Lifespan Respite Care Program |
ARCH and NRC Statements to the RAISE Family Caregiving Advisory Council |
NRC submitted comments in response to RFIs from the Administration for Community Living to the RAISE Family Caregiver Advisory Council and to the Advisory Council to Support Grandparents Raising Grandchildren, February 7, 2020. |
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ARCH presentation to the RAISE Family Caregiving Advisory Council, ACL, HHS, on May 21, 2020, including respite recommendations for inclusion in the national family caregiving strategy. Watch video of the May 21, 2020, Advisory Council meeting. Meeting Agenda. |