LEG ALERTS BANNER

ALERTS

For Alerts in support of the Lifespan Respite Reauthorization Act of 2019, please visit the Lifespan Respite Reauthorization Center

For guidance on visiting Members of Congress and other communication strategies, see Advocacy Tips.

READ MORE on how to TAKE IMMEDIATE ACTION! 

Twitter Handles for 116th Congress 


 

 
 

November 6, 2019

Letter from the Leading Caregiver Organizations Regarding the RAISE Advisory Council

The National Respite Coalition signed onto a consensus letter from the leading caregiver-focused organizations in the nation to Administrator of the Administration for Community Living (ACL), Lance Robertson; Principal Deputy Administrator of ACL, Mary Lazare; Deputy Assistant Secretary of ACL, Edwin Walker; Mr. Greg Link; and RAISE Advisory Council Members. The letter expresses thanks to Administrator Robertson and ACL for launching the RAISE Family Caregiving Advisory Counel. In the letter, two specific issues were raised that the group felt needed to be formally and publicly addressed to ensure the work done by the RAISE Council is effective for all of those it is intended to reach:

  1. The national family caregiving strategy must be inclusive of all caregivers of adults and children across the lifespan. This must include caregivers who have a significant relationship with, and who provide a broad range of assistance to, an individual with a chronic or other health condition, disability, or functional limitation.

  2. We urged ACL to work with caregiving organizations to seek a legislative solution or possible Administrative change to preserve this Council and ensure it meets its intended purpose by extending or altogether eliminating the Council’s expiration date.

Read the letter.


October 15, 2019

Call Today!!! Urge Congress to Support $10 million for the Lifespan Respite Care Program

Time Running Out on House - Senate Negotiations on FY 2020 Appropriations

Urge Members of Congress to Support Higher House Funding Level for Lifespan Respite! 

In September, Congress passed and the President signed a continuing resolution to fund the government through Nov. 21. However, Congress may still pass a final Labor-HHS-Education Funding bill by the end of this Congress, or sooner!

At the time of this alert, House and Senate appropriations staff are actively engaged in negotiating a final FY 2020 Labor-HHS-Education funding bill. The House-passed bill includes $10 million for Lifespan Respite thanks to the successful passage of an amendment on the House floor by Rep. Langevin. The draft Senate bill, includes $6.1 million for Lifespan Respite.

Time is running out as negotiations are underway right now! Contact your Representative and Senators and urge them to support adoption of the higher funding level of $10 million in the House-passed bill.

TAKE ACTION: 

  • CALL your Senators and Representatives to let them know you support the $10 million level of funding for the Lifespan Respite Care Program in the House-passed bill and to urge that level of funding in the final FY 2020 Appropriations bill! The National Respite Coalition also supports the higher House-passed funding levels for the National Family Caregiver Support Program, the Child Abuse Prevention and Treatment Act, and many other programs.

  • Circulate this National Respite Coalition Alert!

  • Post on Facebook and Tweet your support for higher Lifespan Respite Funding. Sample posts and tweets:

Post on Facebook: 

I support the #LifespanRespte Care Program to help the nationa's 43 million caregivers have access to affordable, quality respite services. Respite can help improve family caregiver health and wellbeing, keep families together, and help avoid or delay more costly out-of-home placements. Call your Senators and Representatives today and ask them to retain the House funding for #LifespanRespite at $10 million …follow the link to learn how: https://archrespite.org/images/Lifespan_Appropriations/FY_2020/Appropriations_Alert_FY2020.pdf 

Tweet your Senators and House Members (Be sure to tag them in your Tweet. Find their Twitter Handles)

  • @(Insert Senator or Member's Twitter Hande) Congress must fund the #LifespanRespite Care Program at $10 million to help serve 85% of family caregivers who are not receiving respite. $10 million is a modest investment in families that can save billions in the long-run. @ARCHRespite

  • @(Insert Senator or Member's Twitter HandleSupport $10 m for #LifespanRespite Care program in the FY20 Labor-HHS-Education Funding bill to support innovative respite services for the nation's family caregivers.


September 20, 2019

House Passes Continuing Resolution with Possible Senate Vote Next Week

The House yesterday passed a continuing resolution (H.R. 4378) to fund the government through Nov. 21 by a 301-123 vote. While the bill was supported by the leadership in both parties, most Republicans opposed it. The Senate is expected to pass the bill next week before the Sept. 30 deadline.

However, given unresolved issues in the FY 2020 Labor-HHS- Education funding till, the possibility of a year-long continuing resolution cannot be ruled out. If this were to happen, there would likely be no increases in FY 2020 for the Lifespan Respite Care Program, the National Family Caregiver Support Program or other important discretionary programs that support older adults, people with disabilities, or their caregivers, or other critical programs that support vulnerable children and families.

In an unexpected move this week, the Senate Appropriations Committee released their draft committee report and text of their version of the FY 2020 Labor-HHS-Education Appropriations bill this week without a committee mark up, although it is unlikely to receive any further attention until the bigger issues are resolved (border wall, family planning, etc.). In this draft bill, the Senate Appropriations Committee recommends $6.1 million for Lifespan Respite. As you recall, the House passed its FY 2020 funding bill that includes $10 million for Lifespan Respite. In the midst of all this uncertainty, it is important to note that if the Senate were to pass their version of the bill at some point, it would be conferenced with the House-passed bill to reach agreement on a funding level compromise.

TAKE ACTION: Reach out to your Senators and Representatives to let them know you support the $10 million level of funding for the Lifespan Respite Care Program in the House-passed bill and to urge that level of funding in the final FY 2020 Appropriations bill! The National Respite Coalition also supports the higher House-passed funding levels for the National Family Caregiver Support Program, the Child Abuse Prevention and Treatment Act, and many other programs.

Circulate this updated National Respite Coalition Alert!

Autism CARES Act Cleared for President's Signature

The Autism CARES Act (HR 1058), which reauthorizes and improves the Autism Collaboration, Accountability, Research, and Supports (CARES) Act for another five years, unanimously passed the Senate yesterday, clearing the way for the President's signature. The program helps children, youth, and adults with autism and other developmental disabilities by providing important basic and applied research, interdisciplinary training of professionals, public education, and critical services and supports.The program had a hard sunset and many important aspects of the program would have ended if Congress had not taken this action by September 30.

Please thank your Members of Congress for taking action.


August 19, 2019

 

Urge the Senate to include $20 million for Lifespan Respite in their FY 2020 Appropriations Bill!

The House-passed FY 2020 Labor-HHS-Education Appropriations bill includes $10 million for the Lifespan Respite Care Program, thanks to an amendment offered by our long-standing champion for the program, Rep. Jim Langevin (D-RI). The bill also includes increased funding for the National Family Caregiver Support Program and other programs critically important to children and adults with disabilities, older adults and their family caregivers.

Urgent action is still needed to retain the $10 million. The Senate is expected to act on its funding bills in early September. Passage of the Bipartisan Budget Act of 2019 (H.R.3877) right before the Congressional Recess prevents scheduled discretionary cuts from taking effect and increases limits on discretionary spending. Additionally, it suspends the debt ceiling until August 1, 2021. With a two-year budget deal for fiscal years 2020 and 2021 now in place, Congress will need to finish the FY 2020 appropriations bills. 

However, the budget bill also set FY 2020 allocations for discretionary programs that are below what the House passed for programs in the Departments of Labor, HHS and Education. As a result, Senate funding levels are expected to be less that House-passed funding levels to comply with the caps.

Urge your Senators to support $20 million for the Lifespan Respite Care Program when it considers its version of the FY 2020 spending bill. See and share NRC Appropriations Alert!


June 28, 2019

Bring the Advocacy Home for the July 4th Congressional Recess, July 1-5, 2019

Meet locally with your Representatives and Senators to Support Lifespan Respite and Caregiver Supports!

Take the following actions next week while Members of Congress are in their home states.

Lifespan Respite Funding. On June 19, the House passed the FY 2020 appropriations minibus (H.R. 2740) that includes four appropriations bills, including legislation funding the Departments of Education, Labor, Health and Human Services, and related agencies. The appropriations bill includes $10 million for the Lifespan Respite Care Program, thanks to an amendment offered by our long-standing champion for the program, Rep. Jim Langevin (D-RI) and approved by the House on June 12. The Labor-H spending bill also includes increased funding for the National Family Caregiver Support Program and other programs critically important to children and adults with disabilities, older adults and their family caregivers.

If your Representative voted YES to support the House amendment for $10 m, be sure to thank them!

Advocates continue to urge the Senate to include $20 million for the Lifespan Respite Care Program when it considers its version of the FY 2020 spending bill. The Senate Appropriations Committee could consider the bill right after the July 4th recess.

Visit with your Senators during the July 4th recess and ask them to support $20 million for Lifespan Respite in FY 2020.  For TALKING POINTS and MESSAGE, see NRC appropriations alert

 

Lifespan Respite Reauthorization. On June 25, the House Subcommittee on Health of the Committee on Energy and Commerce held a hearing "Reauthorizing Vital Health Programs for American Families'". The Lifespan Respite Care Program Reauthorization Act of 2019 (H.R. 2035) was one of four Public Health Service Act bills discussed. ARCH NRC testified in support of the the Lifespan Respite Care Program. 

S. 995 is the Senate companion bill and is identical to the House bill. Both bipartisan bills authorize $200 million for the program through FY 2024.

Watch the hearing. Read the NRC testimony

Ask your Representative and Senators to Cosponsor H.R. 2035/S. 995.  For TALKING POINTS and MESSAGE, see NRC Alert.  

To see a current list of cosponsors visit congress.gov

Here's How to TAKE ACTION!

  • In-person meetings are most effective. Take advantage of the July 1-5 district work period when they are home. Make an appointment today and visit with them in their local offices next week. For contact information, use this easy tool! See Tips for a Face-to-Face Meeting with Congressional Members to help you schedule and have an effective face-to-face meeting.

  • Attend Town Hall Meetings. Ask your Senator or Representative if they support family caregivers and urge them to support Lifespan Respite. FInd Town Hall Meetings near you.

  • Call. Call the Capitol Switchboard at 202-225-3121 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 Senator or Representative. For contact information, use this easy tool!


 June 13, 2019

U.S. House Approves Rep. Langevin's Amendment to Raise Funding for Lifespan Respite to $10 M in the FY 2020 Labor-HHS-Education Spending Bill

Late last evening, the House passed an important amendment to the FY 2020 Labor-Health and Human Services-Education (Labor-H) spending bill (H.R. 2740). The amendment, offered by our long-standing champion, Rep. Jim Langevin, raises funding to $10 million for the Lifespan Respite Care Program. The recorded vote on the amendment was 356 in favor to 67 opposed. The Labor-H spending bill also includes increased funding for the National Family Caregiver Support Program and other programs critically important to children and adults with disabilities, older adults and their family caregivers. Debate will continue on the mini-omnibus spending bill on Friday, June 14.

TAKE ACTION!

Here are ways to show your support!

1) See how your Representative voted on the Langevin amendment.

2) Call. Call your Representatives and if they voted YES on the amendment, thank them for their support to raise funding for the Lifespan Respite Care Program to $10 million in FY 2020. URGE your Representative to VOTE YES to support the final funding bill (H.R. 2740). Call the Capitol Switchboard at 202-225-3121 and ask for appropriations or health staff. If you get their voicemail, leave a message!

3) Email and Fax. Calling is most effective, but you can also email or fax your Representative. For additional contact information, use this easy tool!

MESSAGE: Please VOTE YES for H.R. 2740, the FY2020 Labor-HHS-Education Appropriations bill. The bill includes $10 million for the Lifespan Respite Care Program and increases for the National Family Caregiver Support Program and other important programs that support children and adults with disabilities and their family caregivers.

Make the message personal. Share your personal caregiving story. Focus on the need for respite in your state and 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.

Please stress that Lifespan Respite grants are unique because they:

  • Serve individuals of all ages and conditions.

  • Provide direct services, especially for family caregivers caring for individuals who don't qualify for other programs or who are unserved!!

  • Support consumer-directed respite voucher programs; planned and emergency respite; volunteer, community and faith-based respite services; and respite provider volunteer recruitment and training.

The additional dollars in the bill for Lifespan Respite will help provide respite in your state for more family caregivers. If your state does not currently have a Lifespan Respite Grant, share that the increased funding will provide an opportunity for your state to participate.

See this NRC Alert for more information and talking points.


May 22, 2019

Support Letter for FY 2020 Funding for Lifespan Respite and National Family Caregiver Support Program -- Sign on today!

Senators will be in their home states the week of May 27 for the Memorial Day recess. Schedule a meeting with them or see if they have a town hall scheduled and share your support for respite and for family caregivers!

The House Appropriations Committee recently approved its version of the FY 2020 Labor-HHS-Education Approprations bill. It includes $5.5 million for Lifespan Respite, which is $1.39 million above the FY 2019 level and $200 million for the National Caregiver Support program, which is $18.8 million above the FY 2019 level. In addition to increased funding for respite for these two programs, the bill includes an increase of $4 million for the Alzheimer’s disease program to issue grants to demonstrate the benefits of providing direct respite care services to caregivers supporting individuals living with Alzheimer’s disease.

However, your help is still needed. The Senate is expected to consider its FY 2020 funding bill the first week of June. The National Respite Coalition and its national organization partners are still advocating for $20 million for Lifespan Respite in FY 2020 to ensure that all family caregivers in need have access to respite regardless of the age or condition of their loved ones and we need your help.

Please sign your State or Local Agency or Organization onto a letter to Congress urging FY 2020 funding for the Lifespan Respite Care Program and the National Family Caregiver Support Program. To find out more, keep reading!

Background

The National Respite Coalition submitted testimony to the Senate and House appropriations subcommittee in support of increased funding for the Lifespan Respite Care Program. In March, Rep. Jim Langevin (D-RI) and Rep. Brian Fitzpatrick (R-PA) and 34 Members of the House from both parties sent a letter to the House Appropriations Committee requesting $20 million for the Lifespan Respite Care Program for FY 2020. And we are circulating a letter for national organizations to sign onto in support of funding increases for these two important family caregiver support programs.

In FY 2018 and FY 2019, both programs received increases. But to continue to meet the escalating need, additional funding is critically needed. The National Respite Coalition and its national partners are requesting $20 million for Lifespan Respite and $200 million for the NFCSP in FY 2020, but we need YOUR HELP. And we need it quickly!

TAKE ACTION!

Visit with your Senator.  Senators will be in their home states the week of May 27 for the Memorial Day Recess. Schedule a visit or attend one of their town hall meetings or other events and share your support for respite and for family caregivers.  

Call or Email. Call your Representative and Senators and urge them to support increased funding for Lifespan Respite and the NFCSP in the FY 2020 funding bill.

See this NRC Alert for more information and talking points.

Sign on Letter. Sign your state respite or caregiver coalition or your state or local organization on to a letter that will be delivered by NRC to the Chairmen and Ranking Members of the House and Senate Labor-HHS-Education Appropriations Subcommittees. To view the letter and sign on your agency or organization, click here.

Share the link to the sign-on letter broadly with your email lists and networks!

 

April 30, 2019 

29 National Organizations Send Letter to House Appropriations Subcommittee in Support of Lifespan Respite and the National Family Caregiver Support Program 

The National Respite Coalition sent a letter from 29 national organizations to the the Chair and Ranking Member of the House Labor-HHS-Education Appropriations Subcommittee on April 29 in support of $20 million for Lifespan Respite and $202.7 million for the National Family Caregiver Support Program . 

Earlier in the month, the National Respite Coalition submitted detailed testimony to the House Subcommittee on Labor-HHS-Education Appropriations in support of $20 million for the Lifespan Respite Care Program.


March 29, 2019

36 House Members Sign Bipartisan Congressional Letter in Support of Lifespan Respite Care Program funding for FY 2020

On Thursday, March 28, 2019, 36 Members of the House from both parties sent a letter to the Chair and Ranking Member of the House Subcommittee on Labor, Health and Human Services and Education Appropriations requesting $20 million for the Lifespan Respite Care Program in FY 2020.  Given the short turn around time for circulating the letter for sign ons, the significant increase  in the request compared to prior years, and the bipartisan nature of the request, we are encouraged that recognition of respite as a vital caregiver service and the need to support it is growing.  

Thank you to all of our national partners, especially the National Multiple Sclerosis Society, and to our powerful grassroots network and State Respite Coalition partners, for making calls and getting your Representatives to sign on. If you see your Member's name on the letter, be sure to reach out and thank them for their support!  And a very special thank you to Rep. Jim Langevin (D-RI) and Rep. Brian Fitzpatrick for championing the letter! 

Final Congressional Letter

 


March 20, 2019

Urgent Appropriations Alert!

Urge your U.S. House Member to Sign Congressional Letter for FY 2020 Lifespan Respite Funding

TIME IS SHORT! Deadline March 26!

SEE NRC LEGISLATIVE ALERT FOR MORE TALKING POINTS!

FY 2020 Congressional Funding Request:

Rep. Jim Langevin (D-RI) and Rep. Brian Fitzpatrick (R-PA) are asking Congressional appropriators to fund the LRCP at $20 million in FY 2020.

TAKE ACTION:

Call the Capitol Switchboard at 202-225-3121 and ask for your Representative’s office. Ask for appropriations, HHS or health staff. If you don’t reach them, leave a message!

Message: Please sign the Langevin/Fitzpatrick Dear Colleague Letter to Congressional appropriators requesting $20 million for the Lifespan Respite Care Program in FY 2020. Deadline for Members to sign is March 26, 2019.

Make it Personal. Share your personal respite story about why it is son important to you or why respite is so important in your state.

Phone calls or personal visits are best. For contact information or if you prefer to send an email or fax to your Member of Congress, visit the U.S. House of Representatives Directory.

Please pick up the phone and call today.

Then circulate this alert to your networks and colleagues - See printable Legislative Alert for easy steps, messages, and talking points.


January 18, 2019

House and Senate pass Medicaid Extenders Act!

The Medicaid Extenders Act of 2019 has passed both the House, and as of last evening, the Senate! The bill now awaits the President's signature.

The bill provides 3 months of funding for the Money Follows the Person program. States have until September 31, 2019, to spend the funds. The bill also extends the Medicaid's HCBS spousal impoverishment protections until March 31, 2019.

Advocates will use this winning momentum to urge the new Congress to enact longer extensions for both programs.
________________________________

Money Follow the Person
Money Follows the Person has been key to helping people with disabilities and older adults transition from institutional care back into the community.

Some Lifespan Respite grantees and state respite coalition partners have recognized the importance of supporting family caregivers of individuals who transition home, and partnered with their state's MFP to help develop respite registries, train respite workers, or provide other supports to family caregivers.

Spousal Impoverishment Protections

Medicaid’s “spousal impoverishment protections” make it possible for an individual who needs a nursing home level of care to qualify for Medicaid while allowing their married spouse to retain a modest amount of income and resources to pay for rent, food, and medication while the other spouse receives long-term services and supports. Extending this policy will ensure that married couples can stay together when dealing with the struggles that come with caring for loved ones with disabilities and conditions such as dementia, multiple sclerosis, or traumatic brain injury.
___________________________________________

Take Action

Call your Representative and Senators and 1) thank them for taking this action and 2) urge them to immediately consider longer term extensions for Money Follows the Person and the Spousal Impoverishment Protections.

Call the Capitol Switchboard at (202) 224-3121 or (202) 224-3091 (TTY) and ask to be connected to your Senators or Representatives.


December 11, 2018

URGE Congress to Pass the Improve Act

Congress may vote this week, as early as today, on the Improve Act to extend the Money Follows the Person Program for three months. This will provide an important bridge to allow the next Congress to pass a longer term authorization for the program.

MFP expired September 30, 2016, and states are running out of funding. Seven states are already out of funding and ALL programs will end by the end of 2018.

Money Follows the Person has been key to helping people with disabilities and older adults transition from institutional care back into the community.

Lifespan Respite grantees and state respite coalition partners have recognized the importance of supporting family caregivers of individuals who transition home, and partnered with their state's MFP to help develop respite registries, train respite workers, or provide other supports to family caregivers.

The message is to urge Members of Congress to cosponsor and pass the Improve Act and fund the Money Follows the Person program to help more people with disabilities and older adults transition out of institutions and nursing homes and into the homes and communities of their choice.

Take Action

Call the Capitol Switchboard at (202) 224-3121 or (202) 224-3091 (TTY) and ask to be connected to your Representative and Senators. Urge them to pass the Improve Act. 


November 15, 2018

As the holidays approach, urge Congress to pass the EMPOWER Care Act to reauthorize the Money Follows the Person (MFP) Program! States are running out of money – and we are running out of time to get MFP funding during this Congress.

MFP helps people with disabilities and older adults who want to move out of nursing homes or other institutions get back into their communities. MFP has assisted more than 88,000 individuals voluntarily move into a setting of their choice. MFP has improved the lives of older adults, people with disabilities, and their family caregivers, saved states money, and led to better outcomes. That’s why nearly every state has participated in the program! But MFP expired September 30, 2016, and states are running out of funding. People with disabilities deserve the right to live in the community, rather than spending their lives segregated into institutions.

TAKE ACTION: 

URGE CONGRESS TO SUPPORT COMMUNITY LIVING AND FUND MFP!

Call your Senators and Representatives on November 15th and ask them to cosponsor the EMPOWER Care Act!

It's time to reauthorize the program and pass the bipartisan EMPOWER Care Act this year!

For more information on the Empower Act .

Call your Members of Congress:

1. Call the Capitol Switchboard at: (202) 224-3121 (voice) or (202) 224-3091(tty) and ask to be connected to your senators or representative.

2. Repeat. You can use this easy tool to find your members of Congress.

Easy Call Script:

Hello, this is [Name]. I’m a resident of [Town, State].

I am calling to express my concern about the expiration of the Money Follow the Person (MFP) program.

MFP has enabled over 88,000 older adults and people with disabilities living in institutions to transition back to their communities. MFP is fiscally responsible: it has improved the quality of live for thousands of individuals and their family caregivers while saving states money. The program has expired and states are scaling back their programs, and without funding, could have to completely eliminate them.

I am asking [Member of Congress’ Name] to cosponsor and support the EMPOWER Care Act and reauthorize Money Follows the Person Program.

Thank you for taking my call!

[IF LEAVING A VOICEMAIL: please leave your full street address and zip code to ensure your call is tallied]

[Optional Add On]

Personal stories are the most effective form of advocacy. Talk about why Money Follows the Person is important for you, someone you know and love, and their family caregivers.

************

This action alert was adapted from information provided by the Consortium for Citizens with Disabilities (CCD) and the Center for Public Representation.


September 30, 2018

The House and Senate passed and the President signed the conference report on the FY 2019 appropriations bill for programs administered by the Departments of Labor, Health and Human Services, Education, and related agencies that is part of a mini-omnibus bill (H.R. 6157) that also included funding for the Department of Defense, and a continuing resolutation that will fund government programs without full FY 2019 appropriations until December 7. 

The conference agreement includes funding for programs that support respite and family caregiver supports. Some highlights:

  • The nearly $1 million increase for the Lifespan Respite Care Program in FY 2018 was retained to fund the program again at $4.11 million in FY 19.
  • The $30 million increase for the National Family Caregiver Support Program in FY 2018 was retained and an additional $600,000 was included for FY 2019.  Of this increase, $300,000 is reserved for the establishment of the Family Caregiving Advisory Council authorized by the RAISE Act (P.L. 115-119) and $300,000 for the Advisory Council to Support Grandparents Raising Grandchildren authorized by the Supporting Grandparents Raising Grandchildren Act (P.L. 115-196).
  • In discretionary funding for the Promoting Safe and Stable Families program, $20 million was included for Kinship Care Navigator Programs.

  • $5 miilion for Care Corps, which will fund grants to public agencies or private nonprofit agencies to place volunteers in communities to assist family caregivers and/or assist seniors and individuals with disabilities in maintaining independence by providing non-medical care.
Additional Resources

Funding levels for other select programs supporting respite and family caregiver support are included in the National Respite Coalition's FY 2019 Funding Table.

Conference Report to accompany H.R. 6157

Joint Explanatory Statement (includes funding tables for programs administered by the Departments of Health and Human Services, Labor, and Education) 

Thank you to National Respite Coalition members, including State Respite Coalitions, and friends of respite who, with your advocacy, helped ensure retention of last year's increases for Lifespan Respite and the National Family Caregiver Support Program and for new funding for both the Family Caregiving Advisory Council to implement the RAISE Act and the Advisory Council to Support Grandparents Raising Grandchildren.


June 28, 2018

National Organizations Urge Swift Action at HHS to Implement the RAISE Act


On June 28, seventy-five national organizations, including the National Respite Coalition, who supported enactment of the bipartisan Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act (P.L. 115-119), sent a letter spearheaded by AARP, to Department of Health and Human Services Secertary Alex Azar to urge immediate and effective implementation of the law. The RAISE Family Caregivers Act requires the Secretary of Health and Human Services to develop a strategy to support family caregivers within 18 months of enactment. The law establishes an advisory council to bring together representatives from both the private and public sectors to advise and make recommendations. The law outlines specific timetables for action and deliverables. Read the letter.


June 27, 2018

FY 2019 Appropriations Update for the Department of Health and Human Services

On June 15, the House Appropriations Subcommittee on Labor, Health and Human Services, Education and Related Agencies (Labor-HHS) marked up the FY 2019 Labor-HHS-Education appropriations bill. The full committee report was released with expectations that the committee would take up the bill on June 26, but the committee postponed the markup. The report recommends $4.11 million for Lifespan Respite Care Program, the same as the FY 2018 enacted level. The Committee recommended just over $180 million for the National Family Caregiver Support program (NFCSP), retaining the $30 million increase the program received in FY 2018.

The Senate Appropriations Committee also took action in June. The full Appropriations Committee reported out its FY 2019 Labor-HHS-Education Appropriations bill, recommending the same levels as the House bill for Lifespan Respite and slightly more for the NFCSP. The Senate Appropriations Committee recommended an additional $300,000 for NFCSP that is to be used to establish the Family Caregiving Advisory Council to develop a national strategy to support family caregivers as required by the RAISE Family Caregiver Act (PL 115-119) signed into law earlier this year.

The Congressional appropriations process for the Labor-HHS-Education bill still has a long way to go. This bill is traditionally the most controversial of all the appropriations bills with expected emerging issues that will require further debate. The likely scenario for action is to pass a short-term spending measure, a Continuing Resolution, by October 1, the start of the next federal fiscal year that will delay the final passage of a final FY 2019 Labor-HHS-Education appropriations bill until after the November elections.

To see the funding tables proposed by the House and Senate Appropriations Committees for all programs in the Departments of Health and Human Services, Labor and Education, see

House draft report

Senate Report 115-289


June 20, 2018

82 State and local groups  join 53 national organizations in supporting increased funding in FY 2019 for the Lifespan Respite Care and National Family Caregiver Support Programs 

The National Respite Coalition sent letters to the Chairs and Ranking Members of both the House and Senate Labor-Health and Human Services-Education Appropriations subcommittees this month in support of increases in funding for the Lifespan Respite Care and National Family Caregiver Support (NFCSP) Programs.  The first letter was signed by 53 national organizations representing children's, aging, disability and caregiving issues. The second letter was signed by 82 state and local groups, including state respite and caregiving coalitions, from 30 states and the Northern Mariana Islands. 

On June 14, the House Subcommittee on Labor-HHS-Education voted favoarbly to report out the FY 2019 funding bill for programs administered by the Departments of Labor, Health and Human Services, and Education, including the Lifespan Respite Care Program and the NFCSP. The Subcommittee has not yet released the approved funding levels pending full committee approval, which is expected the week of June 25th. The Senate Labor-HHS-Education Appropriations Subcommittee is scheduled to consider their version of the bill next week as well.

NRC Letter from National Organizations

NRC Letter from State and Local Organizations

The National Respite Coalition also submitted written tesitmony for the records of both the House and Senate Appropriations Subcommittees on Labor/HHS/Education in support of FY 2019 Funding for the Lifespan Respite Program. 

House Testimony with references

Senate Testimony with references 

KEEP UP THE GOOD WORK and TAKE ACTION!

Advocacy must be ongoing! Continued action is still needed to make sure we build on the small increases both programs enjoyed in FY 2018. Educating your Senators and House members through personal visits and phone calls are the best ways to be effective,

  • Call or Email. Call your Representative and Senators and urge them to support funding for Lifespan Respite and the NFCSP in the FY 2019 funding bill. See this NRC Alert for more information and talking points.
  • Personal Visits. Need a few tips on how to meet with your Member of Congress?  See the NRCs Advocacy Tools