Lifespan Respite Care Program

The Purpose of the Program and How it Works

The Lifespan Respite Care Program, enacted by Congress in 2006 under Title XXIX of the Public Health Service Act (42 U.S.C 201) and reauthorized in 2020 empowers coordinated state systems to provide accessible, community-based respite care services. Respite supports family caregivers of children and adults across all age groups, disabilities, and chronic conditions. As an essential component of home, and community-based long-term services, respite services can contribute to healthier families and the health and well-being of caregivers and care recipients. Respite care can be both planned and emergency-based, extended to individuals needing assistance, to temporarily relieve the family caregivers.

Program Objectives

The Lifespan Respite Care programs focus on elevating the caliber and availability of respite services through:

Expansion and enrichment: Boosting respite services within states.
Coordination and circulation: Enhancing dissemination and coordination of these services.
Streamlined access: Facilitating ease of access to these programs.
Gap fulfillment: Identifying and addressing any existing service gaps.
Quality improvement: Enhancing the overall quality of present respite services.

Funding History

Since 2009, ACL has awarded competitive grants to eligible agencies in 38 states and the District of Columbia. In FY 2024, Congress appropriated $10 million for the Lifespan Respite Program, an increase of $2 million above the fiscal year 2022 enacted level.

Visit the ARCH website for detailed information on the Lifespan Respite Care Program Grantees, their activities, accomplishments, and listing of state-specific ACL-funded Lifespan Respite Grants.

Incorporating the National Strategy to Support Family Caregivers into Lifespan Respite Programs

In September 2022, the RAISE Act Family Caregiving Advisory Council and the Advisory Council to Support Grandparents Raising Grandchildren released the National Strategy to Support Family Caregivers (the Strategy). The Strategy offers more than 150 suggested actions for states, communities, and others, to better recognize, engage, and support family caregivers. Beginning in FY 2023, ACL began requiring newly funded grantees to re-evaluate and improve their existing respite care systems to align with the Strategy. Applicants applying for Lifespan Respite Care program funding opportunities are encouraged to review the latest policy brief by the ARCH National Respite Network and Resource Center titled The Role of Respite in the National Strategy to Support Family Caregivers and incorporate the Strategy's Principles and Actions into their programs wherever possible.

Funding Opportunities

The Lifespan Respite Care Program has two unique funding opportunities for states. It also funds special projects and the national lifespan respite technical assistance and resource center.

Grants to States

State grantees often include strategies to develop, re-establish, and enhance inclusive and sustainable Lifespan Respite Care systems in their state that expand new/emergency services; support workforce development, training, and recruiting respite workers; and provide accessible respite care to meet the needs of both the caregiver and recipient. Grantees will aim to improve accessibility, standardize service quality, and minimize service duplicity. Initiatives should include offering respite services, building partnerships, promoting volunteerism, providing adequate training, identifying and reducing service gaps, and prioritizing all unserved and underserved populations across the lifespan.

Grantee activities may include:

Environmental Scanning: Understanding respite programs and family caregiver needs.
Outreach: Educating family caregivers about respite services and how to access them.
Training: Increasing the availability of respite services by training volunteered and paid providers.
Community Engagement: Developing respite programs in partnership with faith communities.
Database Development: Enhancing statewide databases of respite care programs, services, and information for easier family caregiver access.
Service Implementation: Developing and implementing person-centered respite service options, such as vouchers.

Eligible Agencies for Lifespan Respite Funding Opportunities

Administers the state's [(any of the several States, the District of Columbia, the Virgin Islands of the United States, the Commonwealth of Puerto Rico, Guam, American Samoa, and the Commonwealth of the Northern Mariana Islands)] program under the Older Americans Act of 1965 or Title XIX of the Social Security Act (Medicaid); or
Designated by a Governor to administer the state's program under this title; or
Must be an Aging and Disability Resource Center (ADRC)/No Wrong Door (NWD) System; or
Must work in collaboration with a public or private nonprofit statewide respite care coalition or organization.

Lifespan Respite Technical Assistance and Resource Center

Technical assistance (TA), a significant part of effective program development, is provided by the ARCH National Respite Network and Resource Center. ACL has funded the ARCH National Respite Network and Resource Center to provide TA to the Lifespan Respite Program grantees and the field since 2009. Their focus primarily lies on:

Supporting the creation of sustainable, integrated, and high-quality respite programs spanning all ages across the lifespan;
Promoting a framework to measure program performance and outcomes; and
Managing and stimulating research in respite and family caregiver support through data collection, synthesis, and dissemination.

For further details, please visit the ARCH National Respite Network and Resource Center.

Lifespan Respite Special Projects

To strengthen the direct care workforce supporting all family caregivers and increasing trained respite providers across the nation, a new Lifespan Respite Special Projects grant to the Respite Care Association of Wisconsin (RCAW) was funded by ACL in FY 2024. With this three-year project, RCAW, and its project core team National Association of State Health Policy (NASHP), PHI, and Ujima United will strengthen and advance the recently developed National Respite Care Provider Training to reach a broader audience in support of ACL’s commitment to strengthening the direct care workforce.

Phase One of this work was spearheaded in the Lifespan Respite Special Projects to Strengthen Program Development, Implementation and Sustainability (LRSP) ACL-funded grant to the National Association of State Health Policy (NASHP), along with their partners, the Lifespan Respite Technical Assistance and Resource Center, and the Respite Care Association of Wisconsin. That project focused on increasing respite workforce recruitment, training, and retention; building a state-based framework and roadmap for respite system planning and development; and enhancing approaches to help caregivers and families develop or strengthen their support systems.

Lifespan Respite Care Program: Select Grantee Activities

Since the adoption of the Lifespan Respite Care Act in 2006, considerable strides have been made toward the establishment of sustainable programs designed to meet the requirements for respite for family units and home caregivers throughout the entire lifetime. These programs include:

CAREthartic Conversations program: A newly developed course aimed at promoting therapeutic journaling for caregivers to enable more effective management of issues including stress, guilt, bereavement, loss, and loneliness.
Comprehensive dementia education and trainings: Offering "Dementia 101 Training", Dementia Caregiver Resource Guide, and specific meetings to share caring strategies linked with Alzheimer's Disease and Alzheimer's Disease Related Dementia (AD/ADRD). These resources have been made accessible to respite providers. The Lifespan Respite Technical Assistance and Resource Center (TARC) has also introduced a guide in English and Spanish entitled Nine Steps to Respite Care for Family Caregivers of Persons with Dementia, including Alzheimer's Disease.
Community engagement: Involving community-based organizations and collaborating with organizations to share respite information.
Healthcare for caregivers: Assisting caregivers to manage their physical and mental wellbeing, along with offering supportive care to medically fragile children.
Populations service expansion: Increasing focus on pediatrics, kinship, tween, teens, individuals with intellectual and developmental disabilities, geographically and medically underserved or unserved, LGBTQ+ Individuals, tribal communities, older adults, and their caregivers.
Respite voucher program: Web apps present an efficient solution for caregivers. They allow enrollment from mobile devices or computers, enabling users to select the respite providers that best suit their needs. These services support caregivers in managing person-centered lifespan respite services in critical moments via a voucher program.
Support for underserved communities: Enhancing services to underserved communities including LGBTQ+, African American, Black, Hispanic, Tribal, as well as caregivers and individuals with chronic and acute health conditions.
Support for working caregivers: Providing reliable information to offer the best support possible, focusing on the identification of relief needs, aiding in substantial stress and depression reduction, preventing early nursing homecare admission, and fostering combined learning and caregiver simulations.

In addition, other strategies and initiatives have been developed such as support groups; respite supports for siblings that have a brother or sister with physical, developmental, intellectual disabilities or mental health concerns (Sibshops); respite break rooms; and the provision of caregiving and respite information for aging network caregiver coordinators. Grantees are also making considerable efforts to make all information accessible, culturally, and linguistically competent for their consumers.

Respite Quotes

The quotes below are from participants in ACL funded lifespan respite programs:

“The respite breaks help me recharge so I can continue to be a better caregiver.“
“Just having respite from 24/7 care for even an hour or two really makes a difference. My spirit, body, and mind can feel the relief.”
“Being a fulltime caregiver for my sister can bring many emotional and physical challenges. Thank you for providing these much-needed services so that I can take better care of her, myself, and all of my family's needs.”
“Without this program I would not be able to take care of my health. I am now able to keep medical appointments and follow-up appointments recommended by my doctor and do preventative tests.”