Products and Publications    

• State Respite Coalitions and LIfespan Respite Program Grant Activities

• Manuals and Guidebooks

• Respite Funding Guides

• Sustainability Resources

• ARCH Fact Sheets

• Nine Steps to Respite for Family Caregivers

• Respite Startup Manuals

• Respite Research Reports

• Performance Measurement and Evaluation

• Bibliographies

• Consumer Guide to Respite

• Toolkit: Lifespan Respite "101"

• National Respite Coalition Documents

• Lifespan Respite Legislative History

• Poster - Asking for Help is a Sign of Strength

• Order ARCH Products

Recent Publications

Frequently Accessed Publications

To Order:

If there is a price associated with the document, you can order these ARCH products online at the ARCH store or by mail (see below). Most fact sheets and guidebooks can be downloaded free of charge. Limited hard copies of some free documents are available. Contact This email address is being protected from spambots. You need JavaScript enabled to view it. for availability. Scroll down for current products.

To view or download free pdf documents, Adobe Reader is required. Download free software at Adobe.

Ordering by mail:

All mail orders must be prepaid by check or purchase order. A shipping and handling fee of $8.00 applies to all orders within the U.S. Larger orders may incur added shipping charges. (Send This email address is being protected from spambots. You need JavaScript enabled to view it. for foreign postage charges). NC residents, add 7% sales tax.

Send mail orders to ARCH at:

ARCH National Respite Network
c/o Families and Communities Rising
4220 NC-55 | Suite 300 | Durham, North Carolina 27713
Fax orders to (919) 490-4905
E-mail orders to This email address is being protected from spambots. You need JavaScript enabled to view it. 
Phone: 1-919-490-5577

State Respite Coalitions and LIfespan Respite Grant Program Activities

In Support of Caregivers
Key Accomplishments of Lifespan Respite Program Grantees

In the descriptions of State Grantee accomplishments captured in the pages of this report, knowledge, commitment, ingenuity, and skillful stewardship and administration of resources are evident. Because a research base to guide grantees in making strong, durable, and responsive state systems is relatively scant, the accomplishments of these state grantees are essential to improve the quality of respite services and to increase confidence among caregivers using respite services. Through their work, state Lifespan Respite grantees provide evidence of the merit of the Lifespan Respite Care Program, and they inform our path forward. Lifespan Respite grantee activities are grouped into eight key areas of accomplishment:

1. Make leadership collaborative.
2. Make respite accessible through No Wrong Door.
3. Make services affordable.
4. Collect and use data
5. Grow a strong provider workforce
6. Innovate programs and practices.
7. Diversify resources.
8. Educate and advocate

Download pdf

A limited number of hard copies are available at no charge. This email address is being protected from spambots. You need JavaScript enabled to view it..

State Summaries of Lifespan Respite Grant Activities

In the summaries of state Lifespan Respite grant objectives, outcomes and activities since 2013 that are included in this compendium, you have an opportunity to discover the unique approaches states have taken to build state Lifespan Respite systems and deliver respite services to unserved populations across the age and disability spectrum. Learn from them, and – we hope – begin or continue a dialogue around topics important to you with other leaders across the nation, and with key partners in your own state. The information is also intended to inform policymakers and funders about innovative solutions that are being developed at state and local levels to advance access to respite and caregiver supports at a time when the need is escalating rapidly. From these vital and timely summaries, ARCH hopes to capture best practices in the design and implementation of Lifespan Respite systems and services to guide continued policy and program improvements. The summaries are based on information gleaned from Lifespan Respite grantee funding proposals, semiannual and final reports that were previously submitted to ACL to meet federal grant requirements. ARCH is grateful to the the Lifespan Respite grantees who granted permission for us to use the documents to summarize and highlight their accomplishments.  Download pdf or search by state for state fact sheets. 

 Manuals and Guidebooks

Volunteer Respite Manual: Creating Valuable Options for Family Caregivers

Drawing on ARCH network members’ experience with volunteer services, ARCH’s recognized Innovative and Exemplary respite services, and Lifespan Respite grantees, this step-by-step manual will help national, state and community-based programs and faith-based initiatives assess needs, plan, and implement volunteer respite programs. It will also assist Lifespan Respite grantees and partners in building respite capacity through volunteer training and recruitment. Topics include:

• program planning and operations;
• volunteer recruitment, training and management;
• performance measurement;
• policies and procedures;
• liability and insurance; and
• marketing.

Considerations for volunteer respite during the pandemic are discussed. 

Download the Volunteer Respite Manual

View Volunteer Respite Manual APPENDICES. 

A limited number of hard copies are available at no charge. This email address is being protected from spambots. You need JavaScript enabled to view it..

Providing and Receiving Respite Care Safely During the COVID-19 Pandemic
Voluntary National Guidelines for Respite Care Agencies, Providers, Family Caregivers, and Respite Care Recipients - updated with guidance on COVID-19 vaccinations
Author: Kim Whitmore, PhD, RN

As more communities across the country begin to re-open in the midst of the ongoing pandemic, many respite care agencies and other respite providers are also planning to resume services. The guidelines provided in this document are designed to assist providers as well as family caregivers with careful and thoughtful planning and implementation strategies to provide and receive respite care as safely as possible during the COVID-19 pandemic. 

Available in Spanish. (en Español)

Please be sure to check out the Decision Guides for Respite Providers and Family Caregivers and the special Guidelines for Families.

Case studies of respite services that have successfully and safely reopened are also provided. 

Download

       

Participant - Directed Respite Guidebook, October 2011
Developed by the National Resource Center for Participant-Directed Services (NRCPDS) for the ARCH National Respite Network and Resource Center.
Authors: Suzanne Crisp, Elizabeth Maguire, Isaac Selkow, and Erin Singer at NRCPDS.

The guidebook is offered as a resource for programs, including State Lifespan Respite Programs, that provide respite and are interested in developing and implementing participant-directed respite, especially through voucher programs. Included are: overview materials that provide content information regarding participant direction, examples from two states that currently implement participant-directed respite programs using a voucher system, important tax and financial information, and resources for additional materials. 

Download pdf file.

National Respite Guidelines

Authors: Maggie Edgar, MSW, Senior ARCH Consultant and Monica Uhl, MA, Partnership for People with Disabilities, Virginia Commonwealth University

The guidelines provide principles addressing quality indicators for all respite models and services. They can act as a checklist for respite providers to review as they address service delivery issues. The guidelines are intended to be used by respite programs, individual providers, health care providers, human services agencies (i.e., disability, health, aging, and children), state agencies, planning groups, stakeholders, and others who are interested in advancing quality respite. State organizations can use the guidelines for planning future respite systems and to provide consultation and technical assistance for local and regional agencies and programs. Local organizations and agencies can use the guidelines as they assess, plan, develop, and enhance or expand specific respite programs and services in their community. Some sections of the guidelines may be helpful when family caregivers recruit and hire their own respite providers. For more information on how to assess and use respite, consumers, family caregivers and care recipients may want to refer to the checklists and additional information included in the ABCs of Respite: A Consumer Guide for Family Caregivers. The guidelines are not intended to be standards or licensing requirements. As the title suggests, they are guidelines or guiding principles for respite programs to follow or consider. The current revisions to the guidelines have incorporated language and best practices to effectively include individuals with special needs across the lifespan. 

Download pdf

A limited number of hard copies are available at no charge. Contact This email address is being protected from spambots. You need JavaScript enabled to view it.. 

The ABCs of Respite: A Consumer Guide for Family Caregivers

This updated guide is useful for family caregivers or those who assist them to become familiar with respite, the types of services available, and funding sources. It provides guidance on assessing personal needs for respite; finding, hiring and training respite providers; and links to other useful resources. State Respite Coalitions, State Lifespan Respite Programs, or local agencies and programs, can use the document in caregiver training or public awareness activities by supplementing it with information about their own state resources.This updated guide is useful for family caregivers or those who assist them to become familiar with respite, the types of services available, and funding sources. It provides guidance on assessing personal needs for respite; finding, hiring and training respite providers; and links to other useful resources. State Respite Coalitions, State Lifespan Respite  Programs, or local agencies and programs, can use the document in caregiver training or public awareness activities by supplementing it with information about their own state resources.

If you link to this document on our website, be sure to update the link.

Download the ABCs of Respite.

Building a Statewide Respite Coalition: Where Do We Begin?

While respite coalitions have different forms and names, they share a common goal: to promote and improve respite and crisis care services within their state. Within every group, members provide a support system for each other and assist in making the most of opportunities and solving problems that are too big for one person or agency to manage. This guide is intended to assist those states or groups that are considering forming coalitions by providing the tools necessary to begin building a state respite coalition. Although the focus is on respite coalitions in particular, the material can be used for building any coalition. It can be used as a general reference or as a workbook for team members as they progress through the development of a coalition.The workbook was updated in 2009 to include additional references, more state examples, and the latest information on the Lifespan Respite Care Act and implications for State Respite Coalitions.    Download

Public Awareness Guidebook

24-page guidebook for crisis nurseries and respite care programs on strategies for increasing public awareness of the availability of services through press releases, and media public service announcements. Sample press releases, telephone contacts, and more; $5.00.   Visit the ARCH online store. 

 

Securing a Stable Funding Base
While materials abound on this subject, none so succinctly lays out the issues related to funding. Making reference to the classics in the field of funding, this guide book simplifies the subject and offers suggestions for trainings.  $10.00.  Visit the ARCH online store.

A Step-by-Step Guide to Successful Training
A trained staff is essential for effective delivery of safe and quality services.  This guidebook has been developed to help trainers create and implement interactive, quality training experiences.  It contains ideas for visual aids and other props and guidance on how to evaluate the training. 41 pages; $10.00.  Visit the ARCH online store.

Start-Up Manuals

 

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 which can help existing programs reevaluate the design of their current services. $28.00 + shipping. Visit the ARCH online store.

Respite Programs for Adults and the Aging: A Start-up Manual    This 258-page manual, contains all of the topics addressed in the original manual (Bringing Respite to Your Community -- see above). Examples, forms, and resources relevant to services for adults were substituted for those in the original document. $28.00 + shipping.  Visit the ARCH online store.

Respite Funding Guides
 

Federal Funding and Support Opportunities for Respite: Building Blocks for Lifespan Respite Systems
Author:  Vivian Gabor,  Gabor & Associates Consulting

Download

Federal Funding Summary Table

This guide provides detailed information about each of the federal programs that provides or could potentially provide respite funding or support. It is meant to be used by state Lifespan Respite Care Programs and their partners to help identify funding sources that could: serve as the building blocks for the state’s Lifespan Respite system; help serve the underserved; build respite capacity and improve quality; support recruitment and training of respite workers and volunteers; and lead to cross agency collaboration.

The information can also be useful to community- and faith-based programs and other local public and private entities that are looking for potential sources of funding to develop new respite services or programs, to expand or sustain respite services, or to enhance respite quality and access. It can also be useful to family caregivers and those who assist them in helping to identify payment sources for respite. Having numerous potential funding sources for respite does not suggest that funding is even close to sufficient to meet the need, but it does suggest the need to advocate for using available funds to support respite and to coordinate funding sources to maximize their benefits.

Medicaid Waivers for Respite Support

State-by-State Summaries of Medicaid Waiver Information
Author: Kathy Mayfield-Smith, Research Associate Professor, Division of Medicaid Policy Research, Institute for Families in Society at the University of South Carolina

This 2019 updated compilation includes information about state 1915(c) Home and Community-Based Medicaid waivers, Managed Home and Community-based Care 1915(b)/1915(c) Combination Waivers, and Global 1115 Demonstration Waivers that Pay for Respite. Medicaid Waivers provide the largest federal source of funding assistance for respite. Each State develops its own waiver income, age and disability eligibility criteria. Waivers are subject to federal approval. Many states maintain waiting lists for Medicaid Waiver services. Even if eligibility criteria are met, receipt of services through a state Medicaid waiver is not an automatic entitlement, as are services under the Medicaid State Plan program, although states now have the option to convert their Medicaid waivers to state plan benefits.  

Download pdf

Sustainability Resources

        

Sustaining Lifespan Respite Systems: Lessons Learned and Practical Applications with a Checklist for Success
Author: Susan Janko Summers, PhD

Sustainability was ranked a top training and technical assistance priority by ARCH Lifespan Grantees in a recent needs assessment. Responding to this need, ARCH partnered with The Finance Project and instituted the Sustainability Planning Project. With technical assistance from The Finance Project, eight Exemplar States worked to develop comprehensive state sustainability plans for lifespan respite care. Through in-depth interviews conducted as part of an evaluation of The Finance Project ’s technical assistance efforts, the Exemplar States shared the wisdom they gained from their actual experience in developing Sustainability Plans. Their challenges and successes, along with experiences shared by other states undertaking sustainability planning activities, informed these Download pdf

Infographic: What's the Key Ingredient for a Successful, Sustainable Coalition?

      

As Lifespan Respite grantees and their State Respite Coalitions work to build diverse and meaningful partnerships for sustainability, ARCH developed this inforgraphic to reflect lessons learned. Download infgraphic

Tools for Collaboration: Building and Sustaining Partnerships for Lifespan Respite Care Programs

This fact sheet provides definitions of different levels of collaboration and answers the questions: Why is collaboration a priority area for the Lifespan Respite Care Program? and What does collaboration in Lifespan Respite Care Programs mean? Also provided are state examples of effective collaborations and partnerships to advance Lifespan Respite systems, and links to valuable tools and resources to support Lifespan Respite Care Program Lead Agencies, State Respite Coalitions, ADRCs and their stakeholders in developing or maintaining collaborations.  Download

Tools for Sustainability: Financing Strategies for Lifespan Respite Programs and State Respite Coalitions

The matrix, Financing Strategies for Lifespan Respite Programs and State Respite Coalitions, provides a summary of approaches that can be used by Lifespan Respite grantees or programs and state respite coalitions to assist with financial sustainability. Includes concrete state and local examples.   Download

For more Sustainability Resources, including the ARCH Sustainability Toolkit,  click here.

Respite Research

Advancing Respite Research - Findings from the Respite Research Summit

On September 29 and 30, 2020, ARCH convened the virtual Respite Research Summit with more than 130 national and international participants. The purpose of the Summit was to review and assess the current state of respite research with the goal of advancing a respite research agenda to strengthen respite services. Researchers currently engaged in respite-related research were invited to present their research on respite and caregiving, with specific reference to six recommendations made by an Expert Panel of researchers, advocates and funders convened by ARCH in 2015. This summary report presents the findings and considerations of Summit presenters and participants for next steps in ARCH's respite research initiative.  Download the report. 

        

A Research Agenda for Respite Care: Deliberations of an Expert Panel of Researchers, Advocates and Funders

To understand the existing research base, and to make recommendations for how to structure and organize future research in ways that will improve understanding of respite care and maximize its benefits and resources, an Expert Panel on Respite Research composed of academics, researchers, service providers, advocates, policymakers and administrators representing a range of age groups, disabilities and professional disciplines gathered over a period of 18 months in order to accomplish three tasks: 1) Explore in-depth the current status of respite research; 2) Propose strategies to overcome barriers to research; and 3) Develop a plan to encourage rigorous research in key areas that will translate to meaningful strategies and approaches to care.

This report contains a summary of the deliberations of the Expert Panel on Respite Research and a research agenda with the Panel's final recommendations for future research in the field of respite. Limited hard copies available. Download pdf.

A limited number of hard copies is available at no charge. Contact This email address is being protected from spambots. You need JavaScript enabled to view it..

Performance Measurement, Evaluation Guides, and Survey Reports

      

Measuring Systems Change and Consumer Outcomes
Recommendations for Developing Performance Metrics
for State Lifespan Respite Programs

The guide provides a roadmap with tools and step-by-step suggestions for developing a performance measurement plan that will reflect the unique goals, activities and approaches undertaken by State Lifespan Respite grantees and their partners. It defines and provides examples of performance targets and suggestions for measuring them. Finally, it offers examples of how grantees can plan and document their individual program’s performance targets and collect appropriate data for measurement and reporting purposes.

Although all grantees are held accountable for the goals and objectives identified in their grant proposals, there is no requirement for grantees to use the methods or examples described in this document. Rather, the information should be used as a reference for planning strategies for measuring a project’s performance over
the course of the grant.

Included in the document are suggested outcomes and indicators for measuring both system changes and caregiver outcomes, sample measurement tools, and sample logic models. The sample tools, or references for published tools, suggested in the document can be found here.  Limited hard copies available. 

Download pdf. A limited number of hard copies is available at no charge. Contact This email address is being protected from spambots. You need JavaScript enabled to view it.. 

  

Evaluating and Reporting Outcomes:
A Guide for Respite and Crisis Care Program Managers Revised Edition; by Dr. Ray Kirk revised by Casandra Firman, MS.150 pages and CD; $45 + shipping.  Visit the ARCH online store.

The guide explains what outcomes are and shows why programs need to be able to demonstrate their outcomes. It also provides instructions and examples of how to identify, evaluate and report outcomes. The instruments in the guide include published scales that can be purchased, scales that can be photocopied, and instructions for creating customized scales. In addition, the Revised Edition includes a CD-ROM disk which includes electronic versions of the new data collection instruments created for this project, as well as two Microsoft Access databases (for planned and crisis respite programs, respectively) which can be used to collect outcomes data. This guide will help local programs demonstrate and report on a variety of outcomes. 

Phase I and II Field Test Results

The ARCH National Respite Network and Resource Center launched an Outcome Evaluation Initiative in 1998 to develop instruments, in the form of surveys, for measuring the efficacy of planned and crisis respite programs. After being field tested and revised, the instruments were field tested again in 2002. Just over 1,000 caregivers from 43 sites participated in the second field test by responding to the surveys. The surveys asked questions designed to examine how respite affected such things as caregiver stress, health and family relationships. Phase II data indicate that respite has an overall therapeutic effect on caregivers and their families. Following the Phase II testing, the instruments were revised based on feedback from participants and published in Evaluating and Reporting Outcomes: A Guide for Respite and Crisis Respite Program Managers (ARCH, 2nd ed.). 

Download the Phase I Field Results

Download the Phase II Field Results.

        

Evaluating Outcomes for Children and Families Receiving Crisis Nursery Services

The ARCH National Respite Network and Resource Center conducted the Crisis Nursery Program evaluation to examine relationships between crisis respite care and (1) incidents of reported child abuse and (2) days of involuntary out-of-home placements. The evaluation also explored the differences in outcomes between crisis respite used as a secondary prevention service and as a tertiary prevention service. Four crisis respite programs were studied, the programs each located in a different county in a western state, operate as a collaborative, and follow a common service delivery model. The evaluation was conducted over 25 months, from June 14, 2004 to July 31, 2006.   Download pdf

   

Planned and Crisis Respite for Families with Children: Results of a Collaborative Study

The Child Welfare League of America (CWLA), the ARCH National Respite Network and Resource Center (ARCH), and Casey Family Programs (CFP) National Center for Resource Family Support collaborated to lay the groundwork for the development of best practice standards for planned and crisis respire services. This report describes the survey’s findings; documents approaches to funding, administering, and delivering planned and crisis respite services to families, as described in the case studies; and makes preliminary recommendations on expanding and enhancing these services to support families and caregivers nationwide.
Download pdf

      

Study of Four Lifespan Respite Programs

In 2004, ARCH endeavored to secure the most current information about the existing State Lifespan Respite Programs by conducting state surveys and follow-up interviews. While only four states had implemented State Lifespan Programs (OR, NE, WI, OK) by that time, several salient findings emerged from early lessons learned.  These four programs became best practices upon which the current national Lifespan Respite Care Program was crafted.  Download pdf

Poster

       Asking for Help is a Sign of Strength Poster

Small Poster, 8½" by 11", glossy paper: "Asking for Help is a Sign of Strength"      To order, visit the ARCH online store.  

Bibliographies

Annotated Bibliography of Respite and Crisis Care Studies, 5th Edition, 2020

The literature review for this updated bibliography adds summaries of 10 peer-reviewed journal articles to the previous edition. New articles were included primarily from the time period 2018, where the 4th edition left off, through 2020. Studies were included if they documented outcomes of respite care for family caregivers, care recipients, families or communities, including cost-benefit studies. The summaries presented include a complete citation; the study’s aim or purpose; a summary of methods; a summary of key results; key study limitations as cited by the authors; and a summary of the authors’ discussion and conclusions. Articles are grouped as follows:  1) respite targeted to children; 2) respite targeted to older adults; 3) respite targeted to adults with developmental disabilities; 4) respite targeted to multi-age groups; 5) caregiver support for Veterans and their caregivers; 6) literature reviews/meta-analyses of respite care studies; and 7) methodological issues in research on respite and caregiver interventions.
Download pdf

      

Respite: An Annotated Bibliography, 2002
This document annotates articles that focus primarily on respite research and outcomes and contains brief summaries of 38 articles written between 1979 and 2000 and published in professional, peer-reviewed journals. The summaries presented include a complete citation, a brief overview of the article, and quotations that capture some highlights of the text.
Download pdf

Toolkit: Lifespan Respite "101"

Free downloads 

ACL Lifespan Respite Fact Sheet, click here.
The US Administration for Community Living updated this fact sheet in 2018 to provide background on the implemented Lifespan Respite Program and to provide ACL's vision for the program.

Original State Lifespan Respite Programs, click here.  This fact sheet provides a summary of the original ARCH study, Statewide Lifespan Respite Programs: A Study of Four State Programs with updated information on the current status of and contact information for the original Lifespan Respite states.

Application as a Collaborative Tool, click here
For States to receive a federal grant to implement a Lifespan Respite Program, they must compete for funds by completing an application to be submitted to the Administration for Community Living. The Lifespan Respite law requires very specific information be included in the application. Compiling this information for the application will require research, documentation, and planning, which presents opportunities for state respite coalition, Aging and Disability Resource Center, and state agency collaboration early in the implementation process. This fact sheet provides details on what is required for the application as well as suggestions for how each partner could be most helpful with any or all of the application requirements.

This fact sheet provides definitions of different levels of collaboration and answers the questions: Why is collaboration a priority area for the Lifespan Respite Care Program? and What does collaboration in Lifespan Respite Care Programs mean? Also provided are state examples of effective collaborations and partnerships to advance Lifespan Respite systems, and links to valuable tools and resources to support Lifespan Respite Care Program Lead Agencies, State Respite Coalitions, ADRCs and their stakeholders in developing or maintaining collaborations.

Lifespan Respite: Who, What, When, Where and How?

PDF of slide presentation.  If you would like the PowerPoint slides, please contact This email address is being protected from spambots. You need JavaScript enabled to view it..

These PPT slides provide answers to the questions: what is respite, why is it important, how big is the problem of respite access, what is Lifespan Respite and why do we need it?  Most importantly, the presentation lays out who needs to be involved, the state requirements for preparing for and implementing a state Lifespan Respite Program in collaboration with all the necessary stakeholders and partners, and where to find examples of innovation and best practices.  Feel free to download these slides and adapt them for your own use -- with ARCH acknowledgment, of course!

National Respite Coalition Documents

Free downloads 

Benefits and Cost Savings Due to Respite Fact Sheet, Click here

Additional Respite Facts and Talking Points, Click here

National Respite Coalition Policy Statements, Testimony, Funding Requests,  Click here

Congressional and Organizational Letters of Support for Lifespan Respite Care Program, Click here

Lifespan Respite Legislative History

Free downloads 

Public Law PL116-324, Lifespan Respite Reauthorization Act of 2020, click here.  Read more about the reauthorization and legislative history.

Public Law PL109-442, Lifespan Respite Act of 2006, click here

Section-by-Section Summary of the Act, click here

Congressional Record of House and Senate Floor Statements on Passage of Lifespan Respite Care Act (December 2006), click here. This document provides the actual transcribed Congressional Floor Statements of key Senators and House Members as they debated final passage of the Lifespan Respite Care Act in 2006. These floor statements, which carry the weight of law, provide critical information on Congressional intent for how the federal government, as well as states, are expected to implement Lifespan Respite programs.

House Energy and Commerce Committee Report on Lifespan Respite Care Act (September 2006), click here. The House Committee report is the only Congressional Report in the legislative history of the Lifespan Respite Care Act. It carries the force of law and elaborates on Congressional intent, especially related to who is to be served by state lifespan respite programs and how the program is to be administered at the state and federal levels.

Statements of Reps. Ferguson and Langevin in support of an amendment to the Labor/HHS/Education appropriations bill fund Lifespan Respite at $10 million in FY 08 (CR, page H8010, July 17, 2007). Click here  

Back to the Top