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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).

Bill Action:

  • On June 25, the Health Subcommittee of the House Energy and Commerce Committee held a hearing on HR 2035.

  • On July 24, 2019, HR 2035 passed the House by voice vote under suspension of the rules and the House-passed bill was sent to the Senate for consideration.

The House-passed 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.

  • On October 31, 2019,  a manager's amendment to S.995 was approved by the Senate Health, Education.Labor & Pensions Committee, clearing it for consideration on the Senate floor.   This bill authorizes $10 million annually through FY 2024 and modifies reporting language.

  • On February 24, 2020, the Senate passed S. 995 by voice vote.

Important Bill Documents

As Introduced:

H.R. 2035

S.995 (as introduced)

Letter of Endorsement from National Organizations on Introduced Bills

Side-by-side summary and comparison of House and Senate-passed bills to Current Law


House Action: 

House Health Subcommittee of Energy & Commerce Committee Hearing on Lifespan Respite Care Act

House Committee on Energy and Commerce Mark-up of HR 2035

House Health Subcommittee on Energy and Commerce Comittee Report, H. Rept. 116-175

House Congressional Record Floor Proceedings on Passage of HR 2035, the Lifespan Respite Care Reauthorization Act

House-Passed Bill (HR 2035)


Senate Action

S. 995 as amended and approved in Senate HELP Committee

Video of Senate Full Committee Mark-up on October 31, 2019

Letter from National Organizations Supporting the Chairman's Mark for S. 995 (amended)

Video of Floor Proceedings for Senate Passage.  See Feb 25, 2020 alert below for information on Senate passage of S 995


February 25, 2020

Senate Passes Lifespan Respite Reauthorization Act (S.995)

On February 24, the Senate passed the Lifespan Respite Reauthorization Act by voice vote. Now this bill will have to be reconciled with the House-passed bill or go directly to the House floor for final passage.


Watch Senator Collins Feb 24th floor statement and final vote on passage of S. 995 as amended. 



July 24, 2019

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

Watch the House Floor Proceedings and the Vote!

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:



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

House-passed bill:  $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.

Senate-passed bill: $10 million in each of FYs 2020-2024

National Resource Center

Establishes National Resource Center on Lifespan Respite Care

 State Reports


House-passed bill:

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.

Senate-passed bill:

(a) Each State agency awarded a grant or cooperative agreement under section 2902 shall report such data, information, and metrics as the Secretary may require for purposes of—
(1) evaluating State programs and activities funded pursuant to such grant or cooperative agreement, including any results pursuant to section 2902(d)(2)(B)(xii) ; and
(2) identifying effective programs and activities funded pursuant to section 2902.
(b) REPORT.—Not later than October 1, 2023, the Secretary shall submit a report to the Committee on Health, Education, Labor, and Pensions of the Senate and the Committee on Energy and Commerce of the House of Representatives regarding the outcomes of the programs and activities funded pursuant to section 2902, including any effective programs and activities identified.


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