State Lifespan Respite Tools & Examples by Category
Shared State Tools
State Lifespan Respite grantees and state respite coalitions frequently share the tools, reports and resources they have developed through their Lifespan Respite grants.* State examples of shared state resources can be found in categories below. National resources may be provided as well.
For more on state advocacy, see Respite and Caregiver Task Forces and State Lifespan Respite Legislation on this tools page.
A VOICE THAT MATTERS -The Impact of Family Caregiving in Alabama as a whitepaper providing an update for public policymakers presented by the Alabama Lifespan Respite Coalition, the Alabama Department of Senior Services, and Alabama Lifespan Respite
The Arkansas Lifespan Respite Coalition has held several Respite Legislative Awareness Days at the State Capitol. Material distributed includes an Agenda, Awareness Day Proclamation, and a Respite Infographic.
In 2017, The Nebraska Planning Council on Developmental Disabilities awarded a grant to the University of Nebraska Medical Center's Munroe-Meyer Institute (MMI) to convene a Respite Task Force. The Task Force was a workgroup made up of family caregivers, state and community nonprofit agencies, and coordinators from the Nebraska Lifespan Respite Network. They were charged with developing a framework to "strengthen, support and expand the Nebraska Lifespan Respite Network and to advance the capacity to deliver respite care services to family caregivers" in the state. At the conclusion of its year-long investigation, the Task Force released its report, including a series of programmatic, policy and administrative recommendations to improve respite services and access to them. Read the final report.
In October 2021, the NY State Caregiving and Respite Coalition held a State Lifespan Respite Summit on Sustainability. The aim of the Summit was to connect policymakers, researchers, family caregivers, and statewide partners to exchange knowledge and expertise, leading to the development of a statewide strategy for strengthening the respite care system for all individuals and caregivers, across the lifespan. The purposes of the Summit were to strengthen state and community partnerships to sustain New York’s Lifespan Respite activities; develop strategies to maximize use of existing respite resources; identify and leverage new respite funds; engage in sustainability planning; and generate innovative activities for future development, with a focus on advocacy and policy. View Part 1 and Part II of the Summit sessions
In October 2018, Oklahoma’s Caregiving and Respite Care Programs presented an Interim Study at the Oklahoma State Capital. A panel of service providers representing different age groups shared their community's perspectives on respite services. In addition, information was shared about the Oklahoma Caregiver Needs Assessment Survey; the benefits of caregiving and respite as an alternative to costly institutionalization; and policy suggestions to balance caregiving and respite resources in Oklahoma. View the Event Agenda, the Interim Study presentation and a table of OK's Statewide Respite programs.
National Overview of Caregiver Assessment and Relevance to Respite
- Listening to Family Caregivers: The Need to Include Family Caregiver Assessment in Medicaid Home and Community-Based Waiver Programs, 2013
Family Caregiver Alliance
Selected Caregiver Assessment Measures: A Resource Inventory for Practitioners, Family Caregiver Alliance
A systematic and well-designed assessment can help identify a caregiver's needs and strengths and, in turn, contribute to a plan of care that ensures the well-being of both the caregiver and care recipient.
As health care continues to move into home setting, it is important to assess not only the knowledge, skills and capacity of the caregiver to provide care but also to address caregiver well-being and health in order to prevent more serious health problems for families in the long-term.
Caregiver Assessment: Why and What Should We Assess?
As a follow-up to the Caregivers Count Too! Report prepared by the National Center on Caregiving of Family Caregiver Alliance, this is the first of two webinars which focus on the importance of the caregiver assessment as an instrument and a process to better identify caregivers' needs and form the foundation for an appropriate plan of care.
The session covered:
- Benefits of Respite for Family Caregivers
- Who, What, Why, When, Where and How Aspects of Assessments
- Relevant Assessment Domains
- Voice From the Field: A Family Consultant's Perspective
- Updates on Caregiver Assessment Instruments - Where Do We Go From Here?
State Examples of Caregiver Assessments
Family Caregiver Alliance
- Caregivers Count Too! Section 4: State Examples of Caregiver Assessment Tools
- Caregiver Assessment Tool, Arizona Department of Economic Security, Division of Aging and Adult Services
- Family Care Navigator Pilot Project (supported by Money Follows the Person Program)
- Year 1 Evaluation Report of FCN
- Blue Grass Area Agency on Aging Self Assessment Tool
- Blue Grass Area Agency on Aging Grandparent Assessment Tool
- South Carolina Respite Coalition Caregiver Self-Assessment included in the Respite Voucher Application
Listen to Lifespan Respite Network teleconference and webinar on coalition building
Successful Coalitions: An Ongoing Process of Self-Assessment, July 19, 2017. Teleconference Recording
This call provided an opportunity for Lifespan Respite grantees and partners to share successes and challenges in engaging members in their state respite coalitions, in defining and redefining the coalition role in Lifespan Respite activities, in structuring the coalition, in sustaining coalition leadership, and in planning for the future. You are not alone if you struggle with any of these issues. Even successful coalitions face challenges when someone leaves, when leadership changes, when state policies or supports shift, when funding ends, or when competing interests are hard to overcome.
Two leaders from successful coalitions, Meghan Kluth with the CO Respite Coalition and Kathy Mayfield Smith, President and Co-founder, SC Respite Coalition shared their perspectives on what makes their coalitions work, how they are structured, and how they have overcome challenges and planned for the future.
Sustaining Lifespan Respite and Strengthening Stakeholder Engagement, Feb 2017. Webinar
Regional Respite Coalition Toolkit for New & Existing Coalitions
Nevada Lifespan Respite Care Coalition 2020 Action Plan. Goal: Promote Awareness and Acceptance of Respite as a valued and normalized support.
- The ABCs of Respite - Consumer Guide for Family Caregivers
- Nine Steps to Respite for Family Caregivers
- National Respite Guidelines
- Information for Respite Providers - A Brochure to Assist those who may be Receiving or Providing Respite Services
- Hiring Respite Providers
- AZ Caregiver Coalition Brochure
- AR Lifespan Respite Postcard
- AR Lifespan Respite Brochure
- AR Respite Coalition Infographic
- AR Lifespan Respite Education Booklet
Providing Respite Booklet for people interested in becoming a respite provider
- "What is Respite?" Flyer
- Texas Respite Coordination Center, What is Respite? 30-sec Video PSA
- TX How to Help Hispanic Caregivers Fact Sheet
Pathways to Respite - developed by Informing Families, a resource of the WA State Developmental Disabilities Council, in partnership with the WA State Developmental Disabilities Administration, Aging and Long-Term Support Administration, and PAVE, which administers the Lifespan Respite Washington.
- Online Training for family caregivers on how to hire, train and retain a respite provider
- KIT (Knowledge, Information, and Tools) for Caregivers
Emergency Respite Flyers, Guidance, Applications, Educational Materials
- Nebraska Lifespan Respite Crisis Respite Eligibility Criteria
- Nebraska Lifespan Respite Crisis Respite Application
- General Information and Forms for Referring Agencies, including Flowchart, Application, Respite provider agreement, Provider billing form, Lifespan Respite Care Service Standards with revisions for COVID-19, Flyers for caregivers and providers, and Presentation about the program
- The Emergency Respite Voucher is available to family caregivers in need of emergency respite for obtaining primary care. Vouchers are available for up to $500 to eligible family caregivers.
Innovative and Exemplary Respite Resource
Lutheran Social Service of Minnesota Caregiver Support & Respite Program - Moorhead, Minnesota - Emergency Respite Planning website
Lifespan Respite grantees and their partners are reaching out to employers to provide information and discover how they can help support employed family caregivers with respite resources. This page provides some useful strategies/tools that states are using for these initiatives.
ARCH Webinar: Tools for Employer Engagement in Respite and Caregiver Support.
Watch the webinar and access the Employed Caregiver Survey.
In this webinar, participants learned about the Employed Caregiver Survey developed and supported by the University of Wisconsin Division of Extension. The importance of understanding the impacts of caregiving on both employees and employers; the benefits of understanding and supporting caregiving employees; and the purpose of the Employed Caregiver Survey as a tool to understand and act on these needs were discussed. Additional information was shared on how to bring the Employed Caregiver Survey to your organization to use in engaging employers.
The webinar also shared information from the NE Lifespan Respite Network about their employer engagement efforts and the results of their initiative.
Panel at the 2022 National Lifespan Respite Conference in Madison, WI, Panel: Supporting Working Caregivers through Employer Engagement
Lifespan Respite grantees, including Nebraska, New York, and Wisconsin have made use of the Employed Caregiver Survey. Learn more about their efforts in a recorded panel presentation on employer engagement at the 2022 National Lifespan Respite Conference. Their presentation slides with survey results can be found at that link as well.
If you need more information about the survey, please contact Kristen Litzelman, PhD, University of Wisconsin-Madison, School of Human Ecology and Division of Extension at Litzelman@wisc.edu.
Additional State Resources
- Colorado Respite Coalition's Caregiving-Friendly Workplace Toolkit. This toolkit provides information about the impacts of caregiving on workers and companies, as well as strategies for Colorado employers to create workplaces that help support caregivers.
- State Strategies for Engaging Employers in Lifespan Respite, Presentation at the 2014 Lifespan Respite Grantee Learning Symposium, Nashville, TN
Facilitators: Meghan Kluth and Lynn Robinson, Easterseals, CO and Peggy Spaulding, CO Lifespan Respite grantee. Notes and Resources
- EMC Survey Final Report
- PPT Presentation, Elevating Respite through a Corporate Outreach Model: Employee survey wields important respite needs, 2016 National Lifespan Respite Conference, Denver, CO (joint presentation with Nebraska below)
- Nebraska Lifespan Respite Network website on Employer Engagement. Contact Kim Falk, UNMC-MMI who serves as the statewide Lead Respite Coordinator for the employer engagement initiative for more information and resources.
- PPT Presentation, Elevating the Needs of Family Caregivers: Why Respite Should Be a Concern to Employers, 2016 National Lifespan Respite Conference, Denver, CO
- PPT Presentation of, Kim Falk, Respite Employer Engagement Initiative and Working Caregiver Survey, 2022 National Lifespan Respite Conference, Madison, WI
- Fact Sheet: New York State's Working Caregivers
- Caregiver Guide for Businesses (Updated 2022)
- New York State Legislation requiring the provision of guides containing best practices for retaining employees who are informal caregivers; provides that such guide shall be available on the websites of the state office for the aging, the department of labor and the department of state.
- PPT Presentation of Greg Olsen, Acting Director, New York State Office for the Aging, NYSOFA Working Caregiver Initiative, 2022 National Lifespan Respite Conference, Madison, WI
- Wisconsin’s Working Caregivers, Strategies and Resources for Employers, Wisconsin Family and Caregiver Support Alliance. This report provides information to share with employers about caregiving needs in WI and presents results from the Wisconsin Employer and Family Caregiver Survey.
- PPT Presentation of Lynn Gall, Wisconsin Department of Health Services and WI Family and Caregiver Support Alliance, Wisconsin’s Working Caregivers, Strategies and Resources for Employers at the 2022 National Lifespan Respite Conference, Madison, WI
State Tools and Resources
- Respite Brochure for Faith Community
- Providing Breaks for Family Caregivers: A Toolkit for Volunteers and Faith Communities
- Volunteer Respite Provider Information
- Volunteer Respite Training Flyer and Registration Form
- TimeBanks Feasibility Study
- Expanding a Volunteer Respite Workforce to Provide Support to Caregivers in New York State, Thomas V. Caprio, MD, MPH, University of Rochester Medical Center (Rochester, New York). Presentation at the ARCH Respite Research Summit, September 30, 2020. View the PPT Slides and Video Recording.
- NC Lifespan Respite Project's Statewide Volunteer Caregiver Respite Consortium
- Lifespan Respite: Information Guide for Developing, Recruiting, Training and Retaining Volunteers
- The Faith Community. Enhancing Caregiver Assistance and Respite
- TakeFive: Funding, Training, Support -- For faith-based or community organizations to develop volunteer programs to offer occasional respite for families of children with special health care needs, including a disability or chronic illness. This project is no longer funded by Temple University, but contact MaryJo Caruso with the PA Respite Coalition for materials.
- Video - Carebreaks - Using Nursing Students to Provide Respite
- Toolkit: Supporting Family Caregivers: Nursing Students as Respite Providers Toolkit
- Marketing Materials -- Sample Article and Flyer
- Breakroom How-to-Guide
- Advancing the Breakroom in South Carolina’s Faith Communities. Presentation at the 2021 International Short Break Conference.
- Respite Brochure for Faith Community
- Spectrum of Respite Options for Faith Community
- Respite Benevolence Policy for faith communities
ARCH Resources on Faith-based and Volunteer Respite
ARCH Resource List
ARCH Volunteer and Faith-based Learning Collaborative
Volunteer Respite Manual: Creating Valuable Options for Family Caregivers (updated 2020)
Webinars and Resources:
- Volunteer Respite – Putting the Pieces Together: Implementation from Recruitment to Matching
- Respite in the Faith Community
Some Lifespan Respite grantees and their partners have worked to embed some or all of their Lifespan Respite grant activities into their state's No Wrong Door systems, Medicaid managed care, statewide caregiver initiatives or other long-term services and supports systems to ensure their sustainability.
- Caregiver Support Blueprint for Delaware - A Report to the Delaware General Assembly
- Tapping into State Initiatives to Ensure Respite and Family Caregiver Support, Peer-facilitated discussion led by Pam Catt-Oliason, ID Commission on Aging at the 2015 Lifespan Respite Grantee and Partner Learning Symposium, Washington, DC, PPT Slides
Local Nebraska Lifespan Respite Network Long Term Care work groups convened in the fall of 2016 for the purpose of providing recommendations to the Nebraska LTC Redesign work group. There are six local respite networks. Western and Southwest combined efforts, and Eastern and Southeast networks collaborated on their recommendations
- Western and Southwest Respite Network recommendations
- Eastern and Southeast Respite Network recommendations
- Northern Respite Network Recommendations
- Central Respite Network Recommendations
New York and Nevada
Webinar, The Shared Vision of Connecting Individuals and Families to Services and Supporting Family Caregivers
The Ohio Respite Coalition engaged Medicaid managed care organizations as they negotiated with state agencies. The results were a new respite benefit for children with special needs.
PPT Presentation of David Besst, Connecting the Dots: Arizona’s Lifespan Respite Care Program and other AoA Programs, National Lifespan Respite Conference, Baltimore, MD, 2010 - See pp 18-23 for Memorandum of Understanding.
MEMORANDUM OF UNDERSTANDING (MOU) between the Arkansas Department of Human Services, Division of Aging and Adult Services and the Arkansas Lifespan Respite Coalition
Some of the Lifespan Respite grantees in collaboration with their state respite coalition and/or other partners, have used their Lifespan Respite grants to offer mini-grants to local community, volunteer, and faith-based organizations to expand or enhance respite services in local communities. Examples of the RFPs/RFAs used by state grantees to solicit proposals, PPT presentations and reports on mini grant implementation and outcomes, and other tools and resources are included here.
In 2022, Alabama Lifespan Respite issued an RFP for Respite Care Program Grants to increase direct respite care services to existing and start-up programs that provide services to underserved populations. Priority is given to programs serving rural communities, Hispanic/Latino and/or African American families, and children at risk for abuse and neglect. Other populations will be considered as well.
The Colorado Respite Care Program periodically awards Community Grants to qualified for profit, nonprofit agencies or governmental entities currently providing respite services for family caregivers of individuals with special needs, chronic conditions, older adults, foster children and kinship relations and more.
Request for Responses, Massachusetts Lifespan Respite Coalition (MLRC); Respite Innovation Mini-Grants, Application for Funding, issued by the Massachusetts Department of Developmental Services
Issue Date: Feb 1, 2013, RFR application and Budget Template.
PPT Presentation, 2014 National Lifespan Respite Conference, Measuring Impact: Evaluation Lessons from Massachusetts’ Lifespan Respite Coalition Programs
- Communication Protocol between NYSCRC and Mini grantees
- Post Respite Survey
- 2022-23 Mini grant Application
2016 Mini-grants. Using Lifespan Respite grant funds, the New York State Caregiving and Respite Coalition announced mini-grant awards to community and faith-based organizations using Lifespan Respite grant funds. See the NYSCRC Oct 2016 newsletter for mini-grant descriptions.
Money Follows the Person Partnership
A joint effort of the Lifespan Respite Care Project, under the Division of Aging and Adult Services and the Money Follows the Person Project, under the Division of Medical Assistance
- Family Caregiver-to-Caregiver Peer Support Pilot Project Announcement and Grant Application Instructions, Issued November 2012, RFA
- North Carolina Lifespan Respite Project: Family Caregiver-to-Caregiver Peer Support, Reporting Form
- Family Caregiver-to-Caregiver Peer Support Award Announcement, February 2013,
NC “Just One More” mini-grant initiative to bring new or enhanced respite services to each of NC’s 100 counties
Request for Applications (RFA) North Carolina Lifespan Respite Project Mini-Grant Funding Application Packet released by the Lifespan Respite Project, North Carolina Department of Health and Human Services, Division of Aging and Adult Services Issue Date: December 30, 2011.
North Carolina provided between $5,000 and $20,000 to each mini-grant awardee. One objective of the mini grant was to test the value of a tool to help caregivers plan their respite time.
Between March 2012 - May 2013:
- 14,126 hours of respite provided to 235 new families.
- Trained 86 volunteers.
- 12 new or enhanced services have been sustained (summer camps, private pay options, volunteer teams).
PPT Presentation, 2013 National Lifespan Respite Conference, Giving Your Communities the Freedom to Care: How a Little Money Can Go a Long Way includes outcomes from the mini-grants.
Mini grants Lessons Learned:
- It was time consuming to manage nine grantees, but funding catalyzed nine communities across the state to create a lasting effect on peoples’ lives.
- Timing and approach seem to be key elements in introducing and using the “Maximizing Respite Time” planning tool.
In more than one setting, caregivers no longer receiving grant-funded services looked for informal/unpaid respite supports. Once experienced, respite was viewed as valuable.
- Average caregiver burden scores significantly declined from pre to post-respite only for those caregivers that talked to their provider about respite planning using the respite planning tool. Burden scores did decline for those caregivers that did not receive consultation from their provider on respite planning, but the decline was not significant.
Mini-Grant Tools and Reports
The NC Lifespan Respite Mini-Grant Final Summary Report includes the following attachments.
- Mini-grant Summary Tables
- Caregiver Survey Results
- NC Lifespan Respite Mini-Grantee Quarterly Reporting Form
Download the Setting Goals to Maximize Your Respite Time Tool
OH Lifespan Respite Volunteer Respite Expansion Mini-grants
OK Lifespan Respite local grantees (awarded 2014)
2019-2022. Samples from South Carolina’s Alzheimer’s Resources Coordinating Council (ARCC) mini grant program and modified versions used by South Carolina for the Breakroom mini-grants:
- Alzheimer’s Resource Coordinating Council (ARCC) Mini grant application (RFP) – SC Department on Aging
- ARCC Mini grant Instruction packet
- ARCC Mini grant Terms and Conditions
- ARCC grant solicitation
- SCRC modified mini grant RFP specific to the Respite Breakrooms
- SCRC mini grant annual summary report (to capture activities of Breakrooms during COVID)
- SCRC Report template for Breakrooms
2012. South Carolina Lifespan Respite Care Project, Supplemental Grant Program: Expansion of Respite Care Through the Faith Community. Released by the South Carolina Respite Coalition, Issue Date: Feb 15, 2012, click here for RFP.
2022. RCAW currently has in place several grant programs for respite providers and community-based programs to expand and enhance respite care, including:
- The CORE Grant Program supports agencies in hosting community and outreach events that recruit respite care providers and educate primary caregivers about long-term care resources, including respite care. Agencies that assist family caregivers and care recipients across the lifespan (ADRCs, County Agencies, etc.) are encouraged to collaborate for such events.
- The Group Respite Grant Program provides funding to enable agencies and organizations to hire respite care providers to offer on-site respite care that allows primary caregivers to participate in activities such as support groups, classes, conferences, etc.
- The Respite Care Provider Grant (RCPG) provides funding twice a year to increase direct respite care services to existing and start-up programs that provide services to underserved populations.
2016. Request for a proposal for the development and operation of a Regional Lifespan Respite Project (2016)
Alabama Lifespan Respite Network (ALRN) provided sample letters, family caregiver and provider surveys, and the results. The survey was designed and conducted by the University of Alabama at Birmingham in collaboration with ALRN:
- AL Respite Survey Recruitment Letter to Agencies
- Respite Survey Cover Letter for Family Caregivers
- Respite Survey Cover Letter for Service Providers
- Respite Family Caregivers Survey, AUG 17, 2010
- Respite Services Provider Survey, August 17, 2010
- Survey Results Respite Service Providers, OCT 2010
- Survey Results: Family Caregiver Needs, March 2012
Brian F. Geiger, EdD, FAAHE & Marcia R. O'Neal, PhD, University of Alabama at Birmingham, School of Education, College of Arts and Sciences and Center for Educational Accountability.
- Designing and Implementing a Needs Assessment.
- Determining Provider Needs for Respite Training, Results of an Alabama Survey
- Respite Care in Delaware: The Delaware Lifespan Respite Information Network, Report to the Governor's Commission on Community-Based Alternatives for Individuals with Disabilities. The University of Delaware Center for Disabilities Studies in partnership with the Delaware Caregivers Support Coalition. Several organizations in Delaware, including the Delaware Caregivers Support Coalition, the Delaware chapter of the American Association of Retired Persons (AARP), and the Center for Disabilities Studies at the University of Delaware, examined the issue of respite care services over a three-year period. Each of these organizations conducted policy analysis and surveys of families. All organizations found that, while there are some good sources of respite support in the state, there was a need for expanded respite services, a centralized database, and a way to link respite providers to caregivers in need of services. The report summarizes these findings.
- Caregiver Survey (2004)
- Provider Survey (2004)
District of Columbia
- Understanding Caregiver Needs in Maryland: Summary of Key Findings: Caregiver Survey Maryland 2015
- Family Caregiver Respite Service Needs Questionnaire
- 2014 Results of Environmental Scan and Needs Assessment
- Final Report: Caregiver Support Service Assessment (metro area)
- Caregiver Support Assessment Survey (metro area)
- Statewide Survey of Providers that offer Caregiver Support Services
In August, 2017, the Respite Across the Lifespan program at the University of Nebraska Medical Center at the Munroe Meyer Institute (UNMC-MMI) was awarded funding from the NE Planning Council on Developmental Disabilities to develop a “Respite Evaluation Task Force.” The Task Force's main purpose was to investigate reasons for the underutilization of the NE Lifespan Respite subsidy and make recommendations and possible strategies to address identified concerns. The Task Force also addressed the challenges of finding respite care providers for individuals who have behavioral challenges. Final Report.
- Nevada Lifespan Respite Care Program Data on Caregivers 2012, Final Report
- 2011 Needs Assessment of Family Caregivers
- Family Caregiver Survey
- Results of Lifespan Respite Caregiver Survey
- Lifespan Respite Grant Caregiver Needs and Provider Survey Report
- South Carolina Respite Coalition Caregiver Survey, August 2020 - Key Findings
- Caregiver Characteristics Associated with Use of Respite Care: Results from a Texas 2012 Statewide Survey, Alison Little and Kristin Christensen, PPT Slides from National Lifespan Respite Conference
- Survey Instrument: Caregiver Survey
The Respite Care Association of Wisconsin is a member of the Wisconsin Family and Caregiver Support Alliance. The Alliance recently released the results of a family caregiver survey on how caregivers find and utilize resources, including respite, and barriers to service use. Results are presented for caregivers of children and young adults under age 30 and caregivers of adults age 30 and older.
The following resources were designed to help assess the respite needs of communities, but many of the same principles can be applied to a statewide needs assessment:
ARCH Fact Sheet. Sticky Figures: Using a Needs Assessment
This fact sheet provides a thorough examination of the process of developing, implementing, and documenting a needs assessment. Various data collecting methods are examined in detail.
Bringing Respite to Your Community: A Start-up Manual
This manual gives step-by-step instructions on how to begin a respite care program. The 332-page book includes chapters on needs assessment, the planning process, program models, budget, collaboration, marketing, funding, administrative policies and procedures, staffing, daily operations, and evaluation. Included are sample forms, policies, job descriptions, and other resources that can help existing programs reevaluate the design of their current services.
Lifespan Respite Coordinators
From Rhode Island, Lifespan Respite Coordinator
From Massachusetts, Project Coordinator
State Respite Coalition Directors
From New York, Caregiver Coalition Director
From Maryland, 2016 Lifespan Respite Project Committees
- 2018 Lifespan Respite Care Survey - for family caregivers post receipt of respite Grants/Vouchers
- Financial Assistance Evaluation Form
- Respite Care I&R Evaluation Form
- RespiteOnline Referral Service Evaluation Form
- DE Financial Assistance Survey Results
- Montana Post Respite Voucher Satisfaction Survey with caregiver outcomes
- Family Caregiver Employment and Depression Screening
- Nebraska Lifespan Respite Network: Producing Positive Outcomes for Families 2015-2017 Evaluation Final Report, UNMC-MMI and DHHS. The evaluation demonstrated respite services resulted in a range of family caregiver outcomes, including fewer health symptoms reported by family caregivers and less relationship strain with the care recipient. Read the Executive Summary.
- NE Lifespan Respite Family Caregiver Survey for caregivers receiving NE Lifespan Respite Subsidy families, with supplemental questions. The supplemental questions are used by the local Respite Network Coordinators for all initial and renewal clients at the time of eligibility determination notification. Calling the family caregiver is done by the Respite Coordinator when receiving notice from the Lifespan Respite Subsidy Social Services Worker (SSW) that eligibility has been completed. This interaction provides an opportunity to begin building (or enhance an existing) relationship with the family caregiver. Goal is to enable families to have confidence in contacting the local respite network if there are concerns or questions.
- Final Report 2021 - Caregiver Respite Self-Directed Pilot
- NV Pre and Post Respite Caregiver Surveys (Rx - 2019)
- Nevada Lifespan Respite Care Program Data on Caregivers 2012, Final Report
- Nevada Helping Hands of Vegas Valley
Caregiver Respite Satisfaction Survey
HHOVV Caregiver Retrospective Survey (Letter)
- New York Minigrant Post Respite Survey
- Lifespan Respite Care Program: Advancing State Lifespan Respite Systems - New York, Program Evaluation Report
- New York’s Lifespan Respite Evaluation Plan for the 2014-2017 grant award
- NC Pre and Post Caregiver Respite Surveys
- Mini-Grant Tools and Reports
- Setting Goals to Maximize Your Respite Time Tool
- Mini-grant Summary Report, March 2012-May 2013 with Lifespan Respite Mini-grantee Summary Tables (Attachment A) and Lifespan Respite Mini-grantee Caregiver Survey Results (Attachment B)
- OK Respite Voucher Program - Pre and Post Respite Caregiver Outcome Surveys
- Respite Voucher Reimbursement Packet 2022 (includes surveys)
- Virginia Lifespan Respite Voucher Program Satisfaction Survey
Organizational Success and Capacity
Tools for evaluating MA state level strategic alliances:
- Presentation of Leanne Winchester, MA Lifespan Respite Coalition on Massachusetts Levels of Organizational Integration at the Lifespan Respite Grantee and Partner June 2021 Performance Measurement Learning Collaborative. Watch the recording.
- Levels of Organizational Integration Rubric
- LOIR Template
- Utilizing Collaboration Theory: Citation: Rebecca Gajda, Utilizing Collaboration Theory to Evaluate Strategic Alliances, The American Journal of Evaluation, Volume 25, Issue 1, 2004,Pages 65-77,ISSN 1098-2140, https://doi.org/10.1016/j.ameval.2003.11.002
- Woodland, Rebecca H. and Michael S. Hutton. “Evaluating Organizational Collaborations.” American Journal of Evaluation 33 (2012): 366 - 383.
- DE Choice of Respite Care Provider by 2010 Financial Assistance Recipients
- DE Demographics of Respite Recipients
- PPT of Yearly Summary of DE Demographic Descriptors
- What is Respite? 3 minute video from AL Lifespan Respite
- Alabama Respite Video on Share the Care
- Alabama Respite Video produced by Alabama Dept of Senior Services, 2013
- Arkansas Lifespan Respite Educational Booklet
CO Respite Coalition Brochure
- Florida Lifespan Respite Alliance, What do you know about Respite Care? Video, 2 min and 41 sec.
- Lifespan Respite Flyer and FAQs about respite
- Lifespan Respite Program Flyer
- Mom's Day Op-Ed
- One-minute Public Service Announcement, PSA, click here.
- Family Caregiver Month and Respite Banner
- Results of Communication Questionnaire distributed to Lifespan Respite Summit attendees to get input on best ways to communicate about respite.
- Caregiving and Respite PSAs
- The Many Roles of Caregivers (30 s)
- care-giver (1 min)
- Caregiver Respite (5 min)
- MA Lifespan Respite Coalition Brochure
- "Respite for caregivers - It's ok to want it. It's ok to need it. It's ok to get it."
30-sec Public Service Announcement
- Respite What A Relief - Captioned. Watch video.
- Lifespan Respite Brochure
- 2019 Respite Awareness Month Proclamation issued by the Governor
- Western Community Health Resources, a regional office of the Nebraska Respite Network, developed a respite video to share information about the services provided.
- NE Regional Marketing/Communication Plans
- Nevada Lifespan Respite Care Coalition 2020 Action Plan. Goal: Promote Awareness and Acceptance of Respite as a valued and normalized support.
- Respite Refuels Caregivers Video
- Nevada Lifespan Respite Brochure
- Lifespan Respite Elevator Card
- Lifespan Respite Poster
- Lifespan Respite Flyer
- Behavioral Framework for Developing Marketing Messages
- Marketing to Caregivers: Moving Beyond Awareness, PPT Slides, Alicia Blater, Lifespan Respite Project Director, NC Division of Aging and Adult Services. Watch the webinar, Marketing Respite to Family Caregivers.
- Taking Care of You Video
Videos from the South Carolina Respite Coalition
- A Physician's Perspective on using Respite to prevent Caregiver Stress Syndrome, Watch the video
- SC Respite Coalition: Faces of Respite, Watch the video.
- SC Respite Coalition: Cuidador Familiar, Watch the video.
- Take a Break (in Spanish) Watch the video.
SC Respite Coalition Brochure
- What's your respite? YouTube videos of caregivers sharing what respite means to them.
- Tennessee Respite Coalition Brochure
- Outreach to Health Community
- What is Respite? 30-sec video
- Respite: Caring for the Caregiver, click here.
- Google Ad Campaign (2013)
- Texas Take Time – Pay-Per-Click Final Report
March 25th to June 14th, 2013
- Texas Take Time – Pay-Per-Click Final Report
State Map of Family Caregiver Task Forces from National Academy for State Health Policy
Alabama Caregiver Task Force
SJR-73 charged the Alabama Caregiver Task Force to study the issues of caregiving in Alabama and to identify policies, resources, and programs available for family caregivers. This task force was encouraged to suggest innovative and creative means to support family caregivers to assist them in providing the needed in-home support for care recipients. Read the final report, A Voice for Alabama Caregivers.
The report was updated as A Voice That Matters: The Impact of Family Caregiving in Alabama.
California Task Force on Family Caregiving and the California Coalition on Family Caregiving.
The California Task Force on Family Caregiving was established to examine issues relative to the challenges faced by family caregivers and opportunities to improve caregiver support, review the current network and the services and supports available to caregivers, and make policy recommendations to the Legislature.
In June 2017, a report was prepared on Legislative Recommendations from Other Caregiving Task Forces across the U.S. The final report of the Task Force, Picking Up the Pace of Change in California: A Report From the California Task Force on Family Caregiving, was published in July 2018. See report for specific recommendations about increasing access to respite in California.
The California Coalition on Family Caregiving is a revitalization of the former California Task Force on Family Caregiving (2016-2019).
Colorado Respite Care Task Force
The Respite Care Task Force was established by HB 15-1233 to study respite care services in Colorado and report its findings to the General Assembly. The Colorado Respite Care Task Force report published in January 2016 presents the Task Force’s findings and recommendations.
Delaware Family Caregiving Task Force
The Delaware Family Caregiving Task Force was formed with the passage of House Concurrent Resolution 57 during the 2014 legislative session. The charge of the task force was to make findings and recommendations regarding the support needs of family caregivers who assist older people and people with disabilities. The Task Force presented the Caregiver Support Blueprint for Delaware to the Delaware General Assembly on May 31, 2015.
Idaho Family Caregiver Task Force
During the 2015 Idaho Legislative Session, HCR 24 was passed, calling for the formation of a Task Force to study the problems facing family caregivers of individuals across the lifespan, identify the supports available in Idaho, research best practice in other states, and to make recommendations for action in Idaho to support this growing, unpaid, caregiver workforce.
The Idaho Family Caregiver Alliance was established through a 3-year Lifespan Respite Grant to the Idaho Commission on Aging from the Administration on Community Living (ACL). They helped the develop the Task Force's final report, Caregivers in Idaho.
Maryland Task Force on Family Caregiving and Long-term Supports and the MD Commission on Caregiving
Maryland’s Task Force on Family Caregiving and Long-Term Supports was formed by SB 297, Ch 155 to “identify those policies, programs, and resources currently available to [caregivers], and also look for innovative and creative means to support [caregivers] as they provide in-home care and assistance ..."
A final report was issued and authorization for the Task Force ended October 30, 2016.
Several respite recommendations were made including:
Given that respondents to the 2015 Maryland Respite Caregiver Survey conducted by the Maryland Caregiver Support Coordinating Council (MCSCC) advised that 48% of these family caregivers currently have no access to respite care (a situation which likely increases stress and morbidity among a significant proportion of caregivers and care recipients), Maryland should develop a state plan for building needed capacity in this area.
Also at the recommendation of the Task Force on Family Caregiving and Long-Term Supports, legislation was enacted and signed by the Governor that renamed the Maryland Caregivers Support Coordinating Council to be the Maryland Commission on Caregiving; alters the membership of the Commission to include certain members of the General Assembly; and requires the Commission to provide ongoing analysis of best practices in family caregiver support programs and to monitor implementation of the Commission’s recommendations. Their focus is lifespan.
Mississippi Caregiver Task Force
A Caregiver Task force functioning under direction from the Mississippi Legislature through Senate Concurrent Resolution 561 developed recommendations to legislators on the direction that Mississippi should be taking in identifying and meeting the needs of the thousands of caregivers across the state. A report titled Caregiver Support Blueprint for Mississippi was presented to the Governor, Lieutenant Governor and legislators on December 1, 2014.
Nebraska Respite Task Force
The Munroe-Meyer Institute, through the Respite Across the Lifespan UCEDD program, was awarded a one-year opportunity grant from the Nebraska Planning Council on Developmental Disabilities. Funding for this project ran from Oct. 1, 2017, to Sept. 30, 2018. The main objective of this grant was to form a Respite Task Force made up of a broad array of stakeholders to actively collaborate to ensure that the respite needs of family caregivers across Nebraska are addressed. The Respite Task Force proposed systems-level, programmatic-level and consumer-level strategies to strengthen and improve the use of respite services, including respite to families with loved ones that have more challenging behaviors. Read the Respite Task Force Report.
New Jersey Caregiver Task Force
Legislation (formerly bill A-3514) creating the “New Jersey Caregiver Task Force” was signed into law Dec. 28, 2018. The 11-member task force was comprised of a broad range of organizations and community representatives, including one person who is a caregiver for a person with a disability, one person who is a caregiver for a person with mental illness, and one person who is a caregiver for an elderly person.
The task force was required to:
- identify existing caregiver support services available in the state;
- identify and survey caregivers in the state
- solicit testimony from caregivers on the nature and type of tasks they perform; the feasibility of task delegation; the availability and sufficiency of caregiver training programs, financial support services, and respite care services; the costs associated with caregiving; the practical experiences of caregivers in relation to their requests for, or receipt of, support services; their experiences interacting with various entities in relation to caregiving matters; and the use of medical leave for caregiving purposes.
The panel submitted a report to the Governor and the Legislature in 2022 detailing its findings and providing recommendations for legislation, or for regulatory or programmatic changes. Read the final report.
New Mexico’s Family Caregiver Task Force
The Task Force was established by HJM 4 in 2014 to “create a state plan for addressing the challenges faced by family caregivers.” One of the seven main goals recommended by the task for in it s final report, New Mexico State Plan for Family Caregivers, was to ensure that family caregivers access respite.
North Dakota Family Caregiver Supports and Services Study, 2016
This study was solicited and funded by the North Dakota Legislative Management. As provided in Section 1 of 2015 House Bill No. 1279, the study was to develop a resource directory of services available to support family caregivers, to identify unmet needs, and prepare recommendations for legislative or administrative consideration. The study required input from stakeholders, including representatives of hospitals, social and clinical providers, advocacy organizations, veterans’ organizations, tribal governments, state and local agencies and institutions, and caregivers in the state.
The Virginia Department for Aging and Rehabilitative Services (DARS) convened the Virginia Family Caregiver Stakeholder Workgroup beginning in July 2017 in response to requests from legislators and advocates to study and develop ways for the Commonwealth to encourage and support families and communities in assisting aging adults and individuals with disabilities. The purpose of this work plan is to address the recommendations developed by the workgroup and to lay out a plan for DARS’ collaborative engagement with sister state agencies.
Read the final report from the Virginia Family Caregiver Stakeholder Workgroup: Recommendations for Improving Family Caregiver Support in Virginia 2018, including recommendations to support annually state funded Lifespan Respite vouchers and to promote volunteer respite care programs through university and community college academic programs and faith-based and nonprofit organizations.
In February 2019, Governor Evers of Wisconsin signed an executive order to establish the Governor's Task Force on Caregiving in Wisconsin. The Respite Care Association of Wisconsin that helped champion the establishment of the Task Force attended the signing of the Executive Order.
The Task Force on Caregiving is charged with analyzing strategies to attract and retain a strong direct care workforce; supporting families providing care for their loved ones through respite services and other supports; establishing one or more registries of home care providers and developing a plan to provide referral or matching services for individuals in need of home care. Read the 2020 report, Wisconsin Caregivers in Crisis: Investing in our Future.
For additional state and national respite provider training resources, visit Respite Provider Training Resources and check the ARCH Resource Library.
Determining Provider Needs for Respite Training, Results of an Alabama Survey, Brian F. Geiger, Marcia R. O’Neal, December 21, 2014
The Kansas Respite Coalition worked to build a career pathway for direct care workers through the Community College System using Lifespan Respite Care Grant funds. While progress was made in developing critical partnerships and piloting the initial phases, it was never fully implemented. However, the coalition has shared documents and lessons learned. The Kansas Direct Care Training and Credentialing Project summarizes what was accomplished, the challenges that were faced, and the actions taken in response to the challenges. See all the resources in the Kansas Respite Provider Training Initiative.
The purpose of the Nebraska Lifespan Respite Network (NLRN) Online Provider Orientation is to provide basic information about what it takes to be a respite provider and the tools needed to be successful. The orientation training is mandatory for all NLRN respite providers. Additional training is available both online and and in-person. Read more.
Provider Recruitment Tools
- Provider Recognition Nomination Form
- Provider Update Letter
- Provider Certificate
- Network Scoring Sheet
- NH Lifespan Respite Provider Curriculum
- State Registry Consent Forms
- Enrollment Request for Respite Training
Providing Respite Booklet for people interested in becoming a respite provider
The SC Respite Coalition developed a respite training course for the SC Department of Disabilities and Special Needs’ (DDSN) Family-Selected Respite Services. This training is an open-entry, self-paced, online course. It has been designed to provide the basic information that is needed to meet the minimum training requirements to participate in DDSN’s Family-Selected Respite program. Training has been developed for two groups: 1) Consumers and Families (Primary Caregivers); and 2) Respite Caregivers (Individual Respite Providers). Read more.
Family caregivers who participate in Lifespan Respite Washington's voucher program can choose providers from a vetted list of agencies. Lifespan Respite Washington developed a report to share with the respite provider agencies listed in their respite registry to keep them engaged and informed. The respite provider report provides data on the caregivers served across the state; welcomes new providers; and provides a snapshot of the data that documents voucher program success. Family caregivers can find information about respite providers here.
Respite Care Association of Wisconsin offers a variety of free online training courses for both caregivers and respite workers on many topics. These courses are divided into five categories: Respite Care Certificate Program, KIT for Caregivers, KIT for Respite Providers, Specialized Trainings, and Monthly Minis. For more information, contact the Respite Care Association of Wisconsin's Training Resources. See also flyers for recruiting providers.
ARCH Resource: Self-Directed Respite Voucher Guide
See also State examples of respite voucher implementation tools and intake/reimbursement forms. For further information on respite voucher programs, see the Respite Voucher Learning Collaborative.
A few are included here, but feel free to browse workshop presentations from past National Lifespan Respite Conferences for presentations on voucher respite initiatives from Lifespan Respite grantees and partners.
The Alabama Lifespan Respite Resource Network’s (Alabama Respite) voucher respite program has been in existence for 18 years, starting with funding for caregivers of children with disabilities living in one Congressional District in Alabama (District 5, Huntsville area).The program has grown to encompass all seven Congressional Districts in the state and serves all ages and disabilities. The guidance document provides step-by-step guidance on administration of a state respite voucher program and provides links to training manuals for family caregivers, enrollment and other forms, and funding information.
More recent information about Alabama Respite's voucher program is featured in an in-depth case study in ARCH's Self- Directed Respite Voucher Guide.
This was a presentation in the Lifespan Respite Track of the 2021 Virtual International Short Break Conference
This presentation described how North Carolina partnered with their United Way 2-1-1 Call Center Staff and other organizations, such as The ALS Association NC Chapter, the NC Autism Society, the NC Division of Child Welfare, and County DSS and adult protective services workers, who interact with family caregivers seeking services, to increase referrals to local respite services and the state’s Lifespan Respite Voucher Program. We’ll also discuss methods for finding and building local referral partnerships that could be great at sharing your message if only they knew who you were and what you did.
The Oklahoma Lifespan Respite Program, for more than a decade, funneled several federal and state funding streams through a single voucher program. To learn more about the program that provided a best practice for Lifespan Respite voucher programs currently, see Roseann Percival's presentation in the Webinar: Funding Sustainability - Examples from the States, and Bonnie Kolar's presentation at the 2011 National Respite Conference.
Creating Respite Where It Doesn’t Exist: A “Gap-Filling” Person-Centered Approach to Respite
This presentation was part of the Lifespan Respite Track at the 2021 Virtual International Short Break Conference
Through a pilot program funded by the Administration for Community Living’s Lifespan Respite Care Program, the presenters shared what it takes to provide respite to unserved and underserved populations across the lifespan of caregivers. Nevada’s Lifespan Respite Rx pilot program is a “self-directed” service model that incorporated a person-centered approach, using the MyLifeCourse Respite portfolio, specifically for caregivers who do not meet eligibility criteria of other programs. Caregivers determined the design and delivery of the respite service. The program not only funds respite but helps a caregiver “create respite where it doesn’t exist” by providing support not typically found in other respite programs. The goal was for caregivers to use respite regularly for one full year. Respite Rx was the prescription; 2-4 hours per week was the recommended dosage. Respite Rx provides valuable insight at the program level to the supportive direct services that caregivers prefer. Attendees will get to see how the MyLifeCourse Respite Portfolio tool and other supports helped tailor respite to the caregiver’s and care recipient’s needs.
Virginia Lifespan Respite Voucher Program: Successes, Challenges, and Lessons Learned
This presentation was part of the Lifespan Respite Track at the 2021 Virtual International Short Break Conference
The Virginia Lifespan Respite Voucher Program (VLRVP), supported by grants from the Administration for Community Living, has worked in partnership with the Virginia Caregiver Coalition (VCC) to provide desperately needed respite opportunities to Virginians since 2009. This session will provide a detailed overview of how the Virginia Lifespan Respite Voucher Program is designed, how it is implemented, the successes of the program design, and overcoming the challenges associated with it. Presenters will also discuss best practices and knowledge gained from the effective implementation over the last decade. Demographic data about individuals served by the program will be highlighted.
Applications/Program Flyers for Respite Assistance
Please note that since these tools were shared, state Lifespan Respite program or State Respite Coalition may be offering applications and information online only and some resources are no longer in use. They are offered here only as examples.
Please note that some state respite voucher applications include caregiver self-assessments to determine level of need.
Alabama Voucher Application Packet
DE Lifespan Respite Network Application for Assistance
2019 Voucher Respite Satisfaction Survey Results
Lifespan Respite Voucher Packet
- Voucher Brochure
- Voucher Application
- Voucher Award Letter
- Respite Voucher Reimbursement Form
- Satisfaction Survey
- Voucher Process Checklist
- MT Respite Voucher Data, including waiting lists
Lifespan Respite Network Brochure
Lifespan Respite Subsidy Program Application
Lifespan Respite Subsidy Billing Document
Funding Request for Exceptional Circumstances, including Crisis Respite
Final Report - Caregiver Respite Self-Directed Pilot
My LifeCourse Respite Portfolio
Respite Rx Program Intake Application
Respite Rx Risk Assessment and Agreement
Announcing Voucher Program with Instructions, PPT Presentation
North Carolina Voucher Tools, 2017
Outreach flyer to help professionals recruit family caregivers for voucher program
CareBreaks FAQs and Income Chart
CareBreaks Flyer - Veterans 60+
CareBreaks Flyer - Veterans All Ages
SCRC Respite Voucher Program Package
Respite Helpline Intake Form
Respite Provider Information Form
Lifespan Respite Washington Caregiver Application
Invoices for Respite Payments
DE Lifespan Respite Network Invoice for Services Provided
NV Voucher Claim Form
TN Voucher Reimbursement Form
Respite Vendor/Provider Information
Voucher Referral Packet
Vendor Authorization Billing Procedures
Respite Provider Information Form
Hold Harmless Forms
Hold Harmless Form
A number of states enacted State Lifespan Respite legislation to establish statewide Lifespan Respite Programs. Copies of the legislation can be found here.
Alabama - To recognize the Alabama Lifespan Respite Network and establish the Alabama Respite Coalition.
Arizona (never funded)
Oregon (no longer funded)
For background information on NE, OR and WI state Lifespan Respite Programs, see Fact Sheet on Original Lifespan Respite Programs as Best Practices.
Other legislation successfully advocated for by State Respite Coalitions:
- Authorizing a surcharge on persons convicted of crimes against at-risk persons. Funds generated by the surcharge to be used for respite services
Coalitions in Alabama, Colorado, Idaho, Nebraska, South Carolina, and Wisconsin successfully advocate for state budget line items or other forms of legislative action to support respite services.
- The Colorado Respite Care Program, with the help of Easterseals Colorado and in partnership with the Colorado Respite Coalition, successfully advocated for $350,000 State General Funds for State Fiscal Years (SFY) 2016 and 2017, an increase from $250,000 in 2015 and $150,000 in 2014. The funds were designated for Lifespan Respite supports, with the majority distributed as community grants and family respite vouchers.
- The Idaho Caregiver Alliance (ICA) and the Idaho Commission on Aging (ICOA) gathered survey and assessment data over a three-year period to publish the Idaho Lifespan Caregiver Action Plan, which gained unanimous support from the 2017 Idaho Legislature, and includes objectives to enhance the state’s Lifespan Respite system and funding strategies.
- The all-volunteer Nebraska Respite Coalition focuses almost exclusively on advocacy and public awareness. They host events for state legislators to ensure that state funds for the Lifespan Respite Program and Lifespan Respite Subsidy are maintained and partner with the NE Lifespan Respite Network to provide family caregiver education events to support family caregivers who in turn help with advocacy efforts.
- South Carolina has built state level respite care funding by maintaining funding for respite vouchers for individuals caring for someone with Alzheimer’s or dementia, and successfully advocating in 2015 for $1 million for respite vouchers as a recurring line item in the Department of Aging budget. By state FY 17-18, with advocacy from respite champions and coalitions across the state, the total state appropriation was further increased to $2.4 million in recurring respite funds.
As states implement their State Lifespan Respite grants, a few have developed strategic plans to help actualize the activities related to the grant's goals and objectives, engage and credit partners, document needs, identify existing resources and ensure sustainability.
Strategic Plan for 2020-2024
Caregiver Action Plan, 2016
Idaho Caregiver Alliance Case for Sustainability
Lifespan Respite Strategic Plan 2013-2018
Summary of North Carolina Lifespan Respite Strategic Plan: 2015-2020
The Family Caregiver Alliance of Rhode Island (FCARI) and the Rhode Island Office of Healthy Aging developed the Rhode Island State Plan for Family Caregivers. The development of this plan was proposed under the Lifespan Respite Program operated by the State Office of Healthy Aging. This plan focuses on the needs of caregivers caring for Rhode Islanders of any age and covers the period from July 2021 through September 2023, coinciding with the State Plan on Aging. Included in this plan is information about Rhode Island’s caregivers, the state’s current efforts to support and serve them and goals and objectives to move forward. One specific aim of the state plan is to expand and implement various programs and partnerships to strengthen FCARI leadership.
Take a Break SC! Sustaining South Carolina's Family Caregivers through Respite, South Carolina State Respite Plan 2013
Take Another Break SC! Updated State Respite Plan – February 14, 2018
(*Please note that some tools may no longer be in use by states and are offered only as examples.)