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.


Twitter Handles for 116th Congress 


 June 30, 2020

House and Senate Appropriations Committees to consider FY 21 funding for the Lifespan Respite Care Program

The House Appropriations Committee is expected to consider the FY 21 funding bill as early as July 7. The Senate Appropriations Committee could also take up their bill in mid-July. The National Respite Coalition is requesting $10 million for FY 21. This amount is in line with Congressional requests for the program. The Lifespan Respite Care program has not received any emergency COVID-19 supplemental funds, yet respite may be the only lifeline to supports for many family caregivers.


  1. CALL your Senators and Representatives at 202-224-3121 to let them know you support $10 million for the Lifespan Respite Care Program in the FY 2021 Labor, Health and Human Services, and Education Appropriations bill.

  2. There are lots of ways to connect virtually! Use this easy tool for more contact information, including email addresses and social media connections.

  3. Circulate this updated National Respite Coalition Alert to your networks!

  4. You can also post on Facebook and Tweet your support for increased funding for the Lifespan Respite Care Program.  Use the easy tool to reach your Representative and Senators. 

 May 15, 2020

House Passes Heroes Act

TAKE ACTION - Urge your Senators to pass the HEROES Act immediately. 

On May 15, the House of Representatives passed the “Health and Economic Recovery Omnibus Emergency Solutions Act” (HEROES Act - H.R. 6800 ), a $3 trillion bill to address the coronavirus pandemic by providing additional assistance for health care, housing, education, employment, food assistance, elections, paid leave, and much more. The bill passed largely along party lines and the Senate is not expected to act quickly on the bill. Some of the provisions important to children and families, people with disabilities, direct service workers, and family caregivers include:

  • Increases in the Federal Medical Assistance Percentage (FMAP) payments to state Medicaid programs by a total of 14 percentage points starting July 1, 2020 through June 30, 2021.

  • An additional 10 percentage-point FMAP increase, capped at 95 percent of a state’s Medicaid costs, for providing specified home and community-based services (HCBS) which, among other things, can be used to recruit and train new direct support professionals who provide home care, raise wages and provide paid leave for direct support professionals, and provide HCBS to those on waiting listings, as long as the state uses the funds to supplement and not supplant existing HCBS funding. Funds can also be used to purchase emergency supplies and equipment, including personal protective equipment.

  • Improvements to the Families First Coronavirus Response Act for paid sick and paid family leave including expanding the caregiving and medical reasons for taking paid leave including caring for family members; expanding the family care definitions to cover any adult family member with a disability, in addition to children; and expanding the number of paid weeks from 10 to 12.

In addition to Senate support for these provisions, the NRC will join disability and aging groups to continue to advocate for permanent reauthorization of the Money Follows the Person Program and other disaster relief for the constituencies we represent.

Read more about other provisions important to people with disabilities. Autism Society HEROES Act Summary

Listed here are a few of the programs serving vulnerable children and families that received increases in funding, including:

  • $20 million for the Community-based Child Abuse Prevention Grant (CBCAP) program; and

  • $20 million for Child Abuse Prevention and Treatment Act (CAPTA) State Grants; and

  • $50 million for Family Violence Prevention and Services.

Read more about additional provisions for children and families in First Focus on Children HEROES Factsheet

For general information:


HEROES ACT Title-by-Title Summary

April 27, 2020

Coronavirus Relief for Seniors and People with Disabilities Act of 2020 (HR 6305, S. 3544) and other Legislative Priorities for these populations and their caregivers

The National Respite Coalition along with other members of the Consortium for Citizens with Disabilities sent a letter to Congressional leadership identifying the most critical priorities for the disability community that must be addressed in the next round of legislation addressing the COVID-19 pandemic. Among the priorities are additional funding for home and community-based services (HCBS) to help people with disabilities, paid sick days and paid leave for family caregivers who can’t work because they are caring for an adult with a disability or aging family member, access to personal protective equipment (PPE) for direct care workers, increased production of PPE and ventilators, and civil rights protections for people with disabilities.

Advocates are calling for inclusion of The Cornoavirus Relief for Seniors and People with Disabilities Act (HR 6305, S 3544) introduced in the House by Rep. Debbie Dingle and in the Senate by Senator Bob Casey in the next package of legisaltion. The bill authorizes a grant program to support Medicaid home- and community-based services during the public health emergency and support for the Direct Support Professional (DSP) and Home Health Workforce. For more information, read a brief prepared by the Community LIving Policy Center at Brandeis University, Understanding the Home and Community-Based Services COVID-19 Response Proposal by Joe Caldwell, Finn Gardiner, and Anna Cass.

March 27, 2020

New Laws to Address Economic, Social and Health Effects of the COVID-19 Pandemic

On March 19, the Families First Coronavirus Response Act was signed into law. The Families First Act provided enhanced unemployment insurance; emergency funding for federal nutrition and food security programs; a 6.2% increase in the federal medical assistance percentage (FMAP) — which determines the federal government’s share of Medicaid expenditures; free corona virus testing for everyone who needs a test; and paid sick leave for employees required to self-quarantine, to obtain a medical diagnosis or treatment for COVID-19. Paid family leave would also be available for employees who need to take time off to care for children.  

On March 27, 2020, Congress passed the Coronavirus Aid, Relief, and Economic Security Act (CARES Act), a $2 trillion stimulus package to address the harmful effects of the COVID-19 pandemic. The Act, that was signed into law, provides a broad range of supports and funding across multiple funding agencies. A partial list of actions include: rebate checks for adults & families in certain tax brackets, increases in unemployment benefits, and support for nonprofits.  

Emergency funds ($955 million) were also allocated for aging and disability services, including senior nutrition programs, home and community-based support services, the National Family Caregiver Support program ($100 m), elder justice, and independent living. For details on human services funding, see a summary from the Alliance for Strong Families and Communities.

The CARES Act also extends the Medicaid Money Follows the Person demonstration that helps patients transition from facility-based settings to the home setting through November 30, 2020, and extends the Medicaid spousal impoverishment protections program through November 30, 2020. This provision helps a spouse of an individual who qualifies for nursing home care to live at home in the community. For other health provisions, see Senate Committee on Finance Section-by-Section Summary.

March 18, 2020

28 House Members Send Letter of Support to Fund Lifespan Respite at $10 million

On March 13, 2020, 28 Members of the House from both parties sent a letter to the Chair and Ranking Member of the House Labor, Health and Human Services and Education Appropriations Subcommittee requesting $10 million for the Lifespan Respite Care Program in FY 2021.

Thank you to all of our national partners 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 (R-PA) for championing the letter!

Final Congressional Letter


March 18, 2020

Older Americans Act Reauthorizations Headed to the President's Desk

On March 11, the House unanimously approved the bipartisan bill to reauthorize the OAA through 2024, the Supporting Older Americans Act of 2020, H.R. 4334. This was the final legislative step for passage. The bill is awaiting the President's signature.  See March 9 alert below for more information. 

March 9, 2020

Senate Passes the Supporting Older Americans Act to reauthorize the Older Americans Act

On March 3, the Senate unanimously approved the Supporting Older Americans Act of 2020 (H.R. 4334). The bipartisan legislation would reauthorize and strengthen the Older Americans Act (OAA), including Title IIIE, the National Family Caregiver Support Program. The bill has now been sent to the House for its consideration before heading to the President’s desk to be signed into law.

The bill represents an agreement reached by Congressional negotiators earlier this year. There were several new provisions that support family caregivers, including an extension of the authorization for the RAISE Family Caregivers Act for an additional year and improvements to the National Family Caregiver Support Program (NFCSP). The National Family Caregiver Program now includes 1) a definition of ‘caregiver assessment’ and assurances that information received from such assessments is taken into account when providing support services; 2) a requirement that the Assistant Secretary for Aging identify best practices for caregiver assessments; and 3) an allowance for the Assistant Secretary for Aging to award funds for activities of national significance that improve support provided to caregivers. The bill also removes the ten percent funding cap for older relative caregivers eligible for NFCSP services, including respite.

Read the bill and a section-by-section summary.

The National Respite Coalition joined 126 national organizations in a letter to support the bill.


Message: Contact your Senators and thank them for supporting Senate passage. Call your House Representative and urge them to take swift action on the Senate-passed bill.

Call the Capitol Switchboard at 202-224-3121 to connect to your Senators' and Members" offices and ask for aging 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!

February 27, 2020

Help with Member sign-ons needed by March 9 for

Bipartisan Congressional Funding Request for Lifespan Respite!!

Rep. Jim Langevin (D-2nd RI) and Rep. Brian Fitzpatrick (R-8th PA) are circulating a Dear Colleague appropriations letter in the House seeking increases for the Lifespan Respite Care Program in FY 21. They need your help, and help from your local affiliates, partners and coalition members, in getting Members to sign-on by March 9, 2020. The request is for $10 million in FY 2021 for the Lifespan Respite Care Program. Requests from as many Members as possible are critical to ensuring funding for the program next year.

We need your help ASAP to get a large number of Members of Congress from both parties to sign this bipartisan letter. 

But we only have until Monday, March 9, to secure their signatures on the letter. Please call your Representatives today and next week and urge them to sign on. If they haven’t seen the letter from Reps. Langevin and Fitzpatrick, you can send them the Dear Colleague Letter.


  • Call the Capitol Switchboard TODAY at 202-225-3121 and ask for your Representative’s office. When connected, 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 $10 million for the Lifespan Respite Care Program in FY 2021. Deadline for Members to sign is March 9, 2020.

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

  • Share this Alert TODAY. After YOU make a call to your Representative, share this alert TODAY with your coalitions, email listservs, families you serve, membership or affiliates.

  • 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, use this easy tool!

February 2, 2020

Agreement Reached on Older Americans Act Reauthorization

Congressional negotiators reconciled differences between the House and Senate versions of the Older Americans Act reauthorization bills and reached agreement on a final, bipartisan, bicameral compromise bill, the Supporting Older Americans Act of 2020 (H.R. 4334).

Bill Highlights for Family Caregivers:

Extension of  the authorization for the RAISE Family Caregivers Act for an additional year.

Improvements to the National Family Caregiver Support Program (NFCSP) including:

  • A definition of ‘caregiver assessment’ and assurances that information received from such assessments is taken into account when providing support services;

  • A requirement that the Assistant Secretary for Aging identify best practices for caregiver assessments;

  • Allowing the Assistant Secretary for Aging to award funds for activities of national significance that improve support provided to caregiversl

  • Removal of the ten percent funding cap for older relative caregivers eligible for NFCSP services.

This bill can now move directly to the Senate floor for consideration and then back to the House for final approval, although timing of such action is uncertain.

Read the bill and a section-by-section summary.

January 7, 2020

Passage of the Further Consolidated Appropriations Act, 2020

At the end of December, the National Respite Coaition reported on passage of the Further Consolidated Appropriations Act, 2020, which includes FY 2020 funding for the Departments of Labor, Health and Human Services and Eduction. This alert provides additional details about FY 2020 appropriations for programs important to family caregivers and the persons in their care, and other critical provisions included in the bill. 

FY 2020 Funding

As reported previously, the bill that was sgined into law on December 20,  includes $6.1 million for the Lifespan Respite Care Program. This is an increase of $2 million over FY 2019 levels. The law also includes a $5 million increase for the National Family Caregiver Support Program ($185.9 million), with $100,000 set aside for implementing the RAISE Family Caregiver Advisory Council.  

The National Respite Coalition prepared a table summarizing FY 2020 funding increases for other programs important to children and adults with disabilities, older adults, and their family caregivers that were also enacted. See details in the:

National Respite Coalition Federal Fiscal Year FY 2020 Funding Table 

Read more in the Division A - Departments of Labor, Health and Human Services, and Education, and Relations Appropriations Act, 2020


Other Important Provisions

The Further Consolidated Appropriations Act also included the following important  provisions that were supported by the National Respite Coalition.

1) An extension for five months, through May 22, 2020, of the Money Follows the Person (MFP) demonstration program, and Medicaid spousal impoverishment protections for home- and community-based services (HCBS).

2) A 10-year extension of the Patient-Centered Outcomes Research Trust Fund, which funds the Patient-Centered Outcomes Research Institute (PCORI), a government-sponsored non-profit that investigates the effectiveness of medical treatments to improve patient care.

3) Extension of medical expense deductions: The legislation includes a temporary 2-year extension of the 7.5% threshold for the medical expense deduction.

4) Family First Transition Act, which addresses the expiration of child welfare demonstration projects by supporting states in the implementation of the Family First Prevention Services Act. This would help states transition to child welfare systems that strive to keep more children safely at home, instead of placing them in foster care. The Act includes four provisions: 1) A phase-in of the 50% well-supported requirement for prevention services reimbursement; 2) $500 million in one-time transition funding to help states and tribes implement Family First; 3) Short-term funding certainty for states with expiring waivers; 4) Renaming of the Promoting Safe and Stable Families Program in honor and memory of MaryLee Allen, a longtime child advocate and close friend and colleague of the National Respite Coalition. 


Thank your Representatives and Senators for taking these important actions to increase support for Lifespan Respite and other programs supporting family caregivers. Find their contact information. You can quickly show your thanks by sending them a Tweet. Here is a list of their Twitter handles.

Thank you for your critical advocacy and for making your voices heard in Congress!! It makes a huge difference. Keep it up in the New Year! The National Respite Coalition stands ready to assist you!

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.