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Legislative Action Center:
Reauthorization of the Lifespan Respite Act


The Policy Division of the 
ARCH National Respite Network


Lifespan Respite Care Program Reauthorization Act of 2019 (H.R. 2035; S. 995)

On Tuesday, April 2, the LIfespan Respite Care Reauthorization Act of 2019 was introduced in the Senate by Senators Susan Collins (R-ME) and Tammy Baldwin (D-WI), and in the House by Representatives Jim Langevin (D-RI) and Cathy McMorris Rodgers (R-WA). The bill authorizes $200 million over five years for grants to states to implement statewide coordinated systems of respite services, provide planned and emergency respite services, recruit and train respite workers and volunteers, and provide information to family caregivers to help them access respite services. To date, 37 states and the District of Columbia have received Lifespan Respite grants from the Administration for Community Living. Extending the program for another five years will help assure that states are able to sustain the great work they have begun and still allow new states to receive a grant.

H.R. 2035


Letter of Endorsement from National Organizations

Side-by-side summary and comparison of Legislation to Current Law

House Press Release - Rep. Jim Langevin

Senate Press Release - Senator Susan Collins

Senate Press Release - Senator Tammy Baldwin

Legislative Alerts and Updates on Reauthorization 

July 24, 2019

U.S. House of Representatives Passes Lifespan Respite Reauthorization Act of 2019!

Watch the House Floor Proceedings and the Vote!

Now Urge the Senate to Act!

Bring the Advocacy Home for the August Congressional Recess! Call Now and Meet locally with your Senators to Support Lifespan Respite!

Lifespan Respite Reauthorization. On July 24, the U.S. House of Representatives passed the Lifespan Respite Care Program Reauthorization Act of 2019 (H.R. 2035).

Now the Senate must act! 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.

Ask your Senators to Cosponsor S. 995. For TALKING POINTS and MESSAGE, see NRC Alert.

Unless we have additional Senate cosponsors, it will be hard to the NRC to push for swift action on the bill. We need your help! To see a current list of cosponsors, visit congress.gov.

Here's How to TAKE ACTION!

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

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

3)  Attend Town Hall Meetings. Ask your Senator if they support family caregivers and urge them to support Lifespan Respite. Find Town Hall Meetings near you.

4)   Call the Capitol Switchboard at 202-224-3121 and ask for health or disability staff. If you get their voicemail, leave a message!

5)  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.

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.

July 16, 2019

To ensure continued Congressional action, Members need to hear from constituents! Please urge your Representatives and Senators to Co-sponsor the Lifespan Respite Care Reauthorization Act (HR 2035; S 995).

Lifespan Respite Care Reauthorization Act of 2019. On July 11, the Health Subcommittee of the House Energy and Commerce Committee voted favorably to advance the bill to the full committee for consideration. The bill will now be considered by the full Energy and Commerce Committee on Wednesday, July 17 at 9:30 am. You can watch the live stream of the mark-up at that time.

Thank you to our champions, Congressman Jim Langevin (D-RI) and Congresswoman Cathy McMorris Rodgers (R-WA) for their long-term unwavering support, to Chairman Frank Pallone (D-NJ) for shepherding the bill to action, and to Subcommittee Chairwoman Anna Eshoo (D-CA) and Rep. Debbie Dingell for their heartfelt and passionate statements in support of the bill and for all family caregivers. Watch the July 11 subcommittee mark-up. (consideration of the Lifespan Respite Care Act begins at 1:25 on the video)

Once the bill is considered by the full committee and approved, it will advance to the House floor for a vote.

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 on the bill on June 25th. (Jill Kagan's testimony begins at about 35 minutes into the video and she responds to additional questions from Members during the remainder of the hearing.) Read the NRC testimony.


June 25, 2019

House Subcommittee on Health of the Energy and Commerce Committee Holds Hearing on the Lifespan Respite Reauthorization Act, H.R. 2035

On June 25, the House Subcommittee on Health of the Energy and Commerce Committee held a hearing on “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 programs under consideration by the Committee during this hearing.  Jill Kagan testified on behalf of the National Respite Coalition, the policy division of ARCH in support of the bill, and answered questions from subcommittee members. 

Opening Statements of Committee Chair and Ranking Member

National Respite Coalition Written Testimony

Letter from members of the Autism, Developmental Disabilities and Autism Task Force of the Consortium for Citizens with Disabilities (CCD) in support of HR 2035

AARP Letter in Support of HR 2035

You can watch the hearing here:



 April 14, 2019

Urge Congress to Support the Bipartisan Lifespan Respite Care Reauthorization Act of 2019 (H.R. 2035; S. 995)

The Lifespan Respite Care Reauthorization Act of 2019 (H.R. 2035; S. 995) reauthorizes the program through FY 2024 at $200 million over five years. The bill was introduced in the House by Rep. Jim Langevin (D-RI) and Rep. Cathy McMorris Rodgers (R-WA), and in the Senate by Sen. Susan Collins (R-ME) and Sen. Tammy Baldwin (D-WI).

The Lifespan Respite Care Program (LRCP): The U.S. Administration for Community Living (ACL) provides competitive grants to state agencies working with Aging and Disability Resource Centers/No Wrong Door Systems and state respite coalitions. The program’s purpose is to make quality respite available to family caregivers regardless of care recipient’s age or disability through coordinated State Lifespan Respite Systems.

Funding: Congress funded the LRCP at $4.1 million in FY 2018 and in FY 2019. The new legislation authorizes $200 million over five years (FY2020 - FY 2024).

Program Status: Thirty-seven states and DC have received LRCP grants from the US Administration for Community Living (ACL) since 2009 (see www.archrespite.org).

  • Take Action!

    Ask your Representative and Senators to cosponsor the Lifespan Respite Care Reauthorization Act (H.R. 2035; S. 995). Call 202-225-3121 and ask for health or disability staff. If you don’t reach them, leave a message!

    Phone calls and personal visits with Members of Congress or their staff are the most effective ways to deliver your message.

    Contact information to set up a meeting with your Representative or Senators

Advocacy TIps for Setting up a Meeting with a Member of Congress

For more Talking Points see the Cost Benefits of Respite and more on the National Respite Coalition Website.

Legislative Alert for Seeking Cosponsors

Video Statements of Support from 2017

At the National Lifespan Respite Conference in Huntsville, Alabama, October 2017, the House and Senate champions of the Lifespan Respite Care Program Reauthorization Act presented via video message on their support for the bill and called conference participants to action to help pass the bill.



FACTS and Talking Points for Respite, click here.



Summary of Lifespan Respite Care Reauthorization Act (changes from current law in italics):

Use of Funds:

The Lifespan Respite Program law authorizes competitive grants to eligible state agencies in collaboration with a public or private non-profit state respite coalition or organization to make quality respite available and accessible to family caregivers regardless of age or disability. Aging and Disability Resource Centers must be involved as collaborators as well. The law allows grantees to identify, coordinate and build on federal, state and local respite resources and funding streams, and would help support, expand and streamline planned and emergency respite, provider recruitment and training, and caregiver training. Grantees will have the option of using funds for training programs for family caregivers in making informed decisions about respite services; for other services essential to the provision of respite; and for training and education for new caregivers.

What is a Lifespan Respite Program?

A lifespan respite program provides a coordinated system of accessible, community-based respite care services for family caregivers of children and adults with special needs.

Lead Agency Eligibility

Funds are provided on a competitive grant basis to specified state agencies or an agency appointed by the Governor. The state lead entity must involve an Aging and Disability Resource Center and work in collaboration with a public or private nonprofit statewide respite coalition or organization. A memorandum of agreement is required in the application. Priority would be given to applicants who show the greatest likelihood of implementing or enhancing lifespan respite care statewide.

Who Can Access Lifespan Respite Programs?

Caregivers who are family members, foster parents, other adults providing unpaid (clarified in report language) care for an adult or child with a special need may access these programs. 

Adult with special need is defined broadly as a person 18 years of age or older who requires care or supervision to meet the person's basic needs, to prevent physical self-injury or injury to others,or to avoid placement in an institutional facility. 

A child with a special need is a person less than 18 years of age who requires care or supervision beyond that required of children generally to meet the child's basic needs or prevent physical self-injury or injury to others.

Application Submission

The Governor submits application on behalf of the State Agency that administers the Older American's Act, the State's Medicaid program, or another agency designated by the Governor.

Federal Administration

Secretary of Health and Human Services is required to work in cooperation with the National Family Caregiver Support Program Officer of the Administration on Aging and other respite care programs within the Department to ensure coordination of respite for family caregivers.

Funding Authorization

$20 million in FY 2020; $30 million in FY 2021; $40 million in FY 2022; $50  million in FY 2023; and $60 million in FY 2024.

National Resource Center

Establishes National Resource Center on Lifespan Respite Care

 State Reports


Each eligible State agency awarded a grant or cooperative agreement must collect, maintain, and report such data and records to enable the Secretary—
(1) to monitor State administration of programs and activities funded pursuant to such grant or cooperative agreement; and
(2) to evaluate, and to compare effectiveness on a State-by-State basis, of programs and activities funded.


Jill Kagan, MPH
Chair, National Respite Coalition
Policy Division of the ARCH National Respite Network
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