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The National Respite Coalition is the Policy Division of the ARCH National Respite Network

Lifespan Respite Care Reauthorization Act of 2019 was Introduced in the House and Senate on April 2, 2019.  Read more on the Lifespan Respite Reauthorization Action Center!

 

national respite coalition

Mission of the National Respite Coalition

The 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.

 

 

FACTS and Talking Points for Respite and Caregiving

Outcome Evaluation of the National Family Caregiver Support Program

The Administration for Community Living (ACL) released the Outcome Evaluation of the National Family Caregiver Support Program on December 6, 2018.

Survey response data were collected from a nationally representative sample of NFCSP client caregivers, a comparison group of caregivers who do not receive NFCSP services, and a sample of care recipients (CRs) of caregivers in the two groups. This was the first national longitudinal survey of caregivers designed for the purpose of evaluating the NFCSP. The five caregiver outcome measures that were focused on in this evaluation were: mental health, physical health, caregiver burden, caregiver satisfaction, and caregiver confidence. The two-part NFCSP evaluation also includes a previously released process evaluation report.

Key Respite Findings

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.

Centers for Disease Control - Caregiving Data from the  2015-2017 Combined National Data from the Behavioral Risk Factor Surveillance System (BRFSS)

Valuing the Invaluable: 2015 Update
Undeniable Progress, but Big Gaps Remain

Susan C. Reinhard, Lynn Friss Feinberg, Rita Choula, and Ari Houser
AARP Public Policy Institute

In 2013, about 40 million family caregivers in the United States provided an estimated 37 billion hours of care to an adult with limitations in daily activities. The estimated economic value of their unpaid contributions was approximately $470 billion in 2013, up from an estimated $450 billion in 2009. 

State-by-State Table on the Number of Caregivers and the Economic Value of Caregiving, 2013, click here. 

Read full report.  

Value-Infographic0001

 

2015 Caregiving in the U.S. 2015 

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. 

Read the report.

High Costs of Caregiving for Children

Family-Provided Health Care for Children With Special Health Care Needs

John A. Romley, Aakash K. Shah, Paul J. Chung, Marc N. Elliott, Katherine D. Vestal, Mark A. Schuster, Pediatrics, December 2016

Many 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.  

Read Abstract

CAREGIVERS IN AMERICA: Growing Contributions with Little Support

Infographic from National Alliance for Caregiving and NASUAD

More on High Costs of Caregiving

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. 

The study improves on earlier estimates about the value of informal caregiving by making use of the 2011 and 2012 American Time Use Survey, a new and unique database, to provide up-to-date cost estimates on informal caregiving.

Source: The Opportunity Costs of Informal Elder-Care in the United States: New Estimates from the American Time Use Survey by A.V. Chari, John Engberg, Kristin Ray, Ateev Mehrotra, Health Services Research, 2014

Abstract

Four in ten adults in the U.S. are caring for an adult or child with significant health issues, up from 30% in 2010.

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.

Source: PEW Research Center, June 20, 2013

Full Report

Respite Cost Savings Fact

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.

Source:  David S. Mandell, ScD; Ming Xie, MS; Knashawn H. Morales, ScD; Lindsay Lawer, MA; Megan McCarthy, MA; Steven C. Marcus, PhD. The Interplay of Outpatient Services and Psychiatric Hospitalization Among Medicaid-Enrolled Children With Autism Spectrum Disorders. Arch Pediatr Adolesc Med. 2012; 166(1):68-73. doi:10.1001/archpediatrics.2011.714 

Full Article

National Respite Coalition Fact Sheets

  • Respite and Caregiving Fact Sheet, 2012, Click here
  • Updated. Cost-Savings and Benefits Due to Respite Fact Sheet 2019, Click here
  • Respite for Children, 2012, Click here

 

Advocacy Tips for Contacting Members of Congress

Here's How to TAKE IMMEDIATE ACTION!

  • In-person meetings are most effective. Take advantage of this district work periods when your Senators and Representatives are home. Make an appointment today and visit with them in their local offices. For contact information, use this easy tool!

  • See Tips for a Face-to-Face Meeting  below with Congressional Members to help you schedule and have an effective face-to-face meeting.

  • Attend Town Hall Meetings. Ask your Senators and Representatives if they support family caregivers and urge them to support Lifespan Respite. Find Town Hall Meetings near you.

  • Call.  If you can't meet in-person, CALL TODAY! Call the Capitol Switchboard at 202-224-3121 and ask for health or disability staff. If you get their voicemail, leave a message!        

  • Email and Fax. In-person meetings and calling are most effective, but you can also email or fax your Senators. For contact information, use this easy tool!

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.

Tips for a Face-to-Face Meeting with Congressional Members

Download Tip Sheet

 

WRITE OR FAX A LETTER TO YOUR MEMBER OF CONGRESS

1. Address

The Honorable (Insert Full Name of Congressman)
(Room #) (Name of Building) (Senate or House) Office Building
United States (Senate or House of Representatives)
Washington, D.C. (20510 zip code for the Senate or 20515 zip code for the House)

2. Salutation

Dear Senator ___________ or Dear Represenative ____________.

3. Mention you are a Constituent and include your address after you sign your name at the bottom.

4. State your request or purpose for writing in the opening paragraph.

5. Avoid form letters and make it personal. Emphasize the importance of respite to you, community members, and the family caregivers in your state or in the Member's district.

6. Keep the content brief and focused on one issue. 

7. Do your research and include a few statistics.

  • Explain the extent of the need for respite in your state (number of family caregivers, the cost born by your state’s caregivers, waiting lists for respite, etc). 

  • Use a few statistics that describe the need and benefits of respite, the goals of the Lifespan Respite Care Program, and how the Senator/Rep. can help get funding, and be prepared to share the information.

8.  Be courteous and respectful in all communications. 

9.   Be sure to say Thank you! 

10. Write a letter of appreciation if your Senator or Representative responded positively to your request, demontrated support for a bill your are advocating for, or if they supported funding for the Lifespan Respite Care Program or other caregiver supports.

11. Consider Faxing the letter.  Faxing may seem old fashioned, but it is a timely way for sharing your letter, is more effective than an email, and provides a paper record. You can find the fax numbers by going to the Member's website (visit www.senate.gov/senators/contact or www.house.gov/representatives).