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# Volunteer Respite Programs

**Resources to Establish and Sustain Volunteer Respite Programs**

## 

## **Overview** 

This document is designed to assist ADDGS grantees in establishing and
sustaining volunteer respite service programs. It presents information
in three sections. These sections are:

-   [General principles for establishing and sustaining volunteer
    respite programs](#section-4)

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-   [Nationally Recognized Volunteer Respite Programs and Related ADDGS
    Examples](#section-5)

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-   [Publications outlining steps for establishing voluntary in-home
    caregiver support and respite services](#section-6)

The online links in this document are designed to direct the reader to
key pieces of information about the programs described.

## 

## 

## **General Principles for Establishing and Sustaining Volunteer Respite Programs** 

Several organizations, including the Robert Wood Johnson Foundation,
Oregon's Lifespan Respite Program, and the ARCH National Resource
Centers have published guidance about establishing and sustaining
voluntary programs to provide in-home services. For example, these
organizations recommend that programs have paid supervisors, ongoing
recruitment efforts, and solid base funding. Examples of key pieces of
guidance are provided below.

-   **[Faith in
    Action.](http://www.fiavolunteers.org/Assets/files/nn56_Executive_Summary_final_PPV.pdf)**
    Key principles for establishing and sustaining in-home volunteer
    services are outlined in the executive summary of a report
    evaluating the Robert Wood Johnson Foundation's *Faith in Action*
    program prepared by Public/Private Ventures (P/PV). Grantees may
    find the information on survival and recruiting and retaining
    volunteers on pages iii to vi of particular interest.

-   **[Oregon's Lifespan
    Respite.](http://www.aoa.gov/alz/public/alzprof/ADDGS/documents/Building Oregon's Lifespan Respite Care System.pdf)**
    Oregon's statewide *Lifespan Respite* program has published a list
    of guiding principles on page seven of "Building Oregon's Lifespan
    Respite Care System."

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-   **[ARCH (Access to Respite Care and Health) National Resource
    Center.](http://www.archrespite.org/archfs18.htm)** Guiding
    principles published by the ARCH National Resource Centers can be
    found in the "Volunteers: A Valuable Resource" Fact Sheet.

## 

## **Nationally Recognized Volunteer Respite Programs and Related ADDGS Examples** 

This section describes three nationally known volunteer respite programs
and provides related ADDGS project examples. The three nationally known
programs described are:

-   Brookdale Foundation's National Group Respite Program

-   Robert Wood Johnson Foundation's Faith in Action Program,

-   University of Alabama's "Support Teams

**The Brookdale Foundation's National Group Respite Program**

The Brookdale Foundation's National Group Respite Program is a social
adult day care model that provides dementia-specific group activities
for participants and respite time for caregivers.

The Brookdale Foundation funds 15 programs annually. Grants are for
\$7,500 in the first year, and \$3,000 in the second year. Applicants
must be non-profit organizations seeking to provide dementia specific
day services. Programs must be based on a social day service model and
must provide caregiver services. Services must be available for at least
four hours a week. Programs must be staffed by at least one paid
professional staff member who is responsible for the supervision of
program assistants, including volunteers and students. Sponsoring
organizations must provide 100% matching funds either in cash or in-kind
support. Applicant organizations must demonstrate that a concrete
fundraising plan has been established to sustain ongoing services. Most
programs operate on annual budgets of \$15,000 to \$20,000.

Information about delivering a package of core services using the
Brookdale model and the grant application process can be found on the
[Brookdale National Group Respite
Program](http://www.brookdalefoundation.org/respiteprogram.htm) website

Contact Information: For additional information contact *[Carmen
Mendieta](mailto:CarmenMendieta@brookdalefoundation.org)* at (510)
540-6734.

> **ADDGS Example:** During the 1990s, *Florida's* Department of Elder
> Affairs implemented the Florida Alzheimer's Volunteers Offering
> Respite (FAVOR) program. With funding from the Brookdale Foundation
> and the state's ADDGS grant, project FAVOR supported group volunteer
> respite activities at three multi-purpose organizations in Palm Beach,
> Miami and Liberty City and six respite specific sites in St.
> Petersburg, Jacksonville, Orlando, Tampa, Clearwater, and Bradenton.
> Project staff from the respite specific sites were sent to annual
> trainings in New York conducted by the Brookdale Foundation.
>
> ADDGS Contact Information: For further information contact *Dawn
> Lynch* at the Florida Department of Health (850) 245- 4444 ext. 2270.
> One of the respite specific sites still operating is the Share the
> Care Inc. in Orlando. *Mary Ellen Ort-Marvin* at Share the Care, Inc.
> can be reached at (407) 423-5311 or
> [www.helpforcaregivers.org](http://www.helpforcaregivers.org/).

**Robert Wood Johnson Foundation's Faith in Action Program**

Faith in Action is an interfaith volunteer caregiving initiative
supported by of The Robert Wood Johnson Foundation (RWJF). Local Faith
in Action programs bring together multi-faith volunteers to work
together to provide in-home care for their neighbors who have long-term
health needs. Faith in Action has hundreds of [program
sites](http://www.fiavolunteers.org/find-fia-program.cfm) nationwide. On
average, more than 100 care recipients are served by each *Faith in
Action* site. Typically, volunteers provide services three hours a week.

RWJF established programs based on the proven success of the *Faith in
Action* caregiving model that is based on the following five [Building
Blocks](http://www.fiavolunteers.org/building-blocks.cfm): 1) interfaith
2) use volunteers, 3) provide help with caregiving, 4) assist people
with long-term illness and disability; and 5) provide home-based
services.

In 2003, The Robert Wood Johnson Foundation released a study titled,
["*Faith in Action: Using Interfaith Coalitions to Support Voluntary
Caregiving
Efforts"*](http://www.ppv.org/ppv/publications/assets/122_publication.pdf)
conducted by Public/Private Ventures (P/PV) that identified program
characteristics associated with interfaith volunteer caregiving program
survival. [Key sections of the
report](http://insite.alz.org/advocacy/stateclearinghouse/x AoA/Relevant RWJ Sections.pdf)
related to: 1) practices associated with successful programs and 2)
critical issues facing interfaith voluntary caregiving programs can be
found.

> **ADDGS Example:** In January of 2004, *Idaho's* Commission on Aging
> began working with a new Boise Faith in Action site to provide
> volunteer in-home and respite services to families identified by ADDGS
> project staff. AAA III located in Boise (which participates in the
> ADDGS program) has referred participants to the Faith in Action
> program and the Boise Faith in Action staff has referred participants
> and their caregivers to the AAA/ADDGS program. Faith in Action
> volunteers provide two forms of volunteer respite services: in-home
> services, and walking companions for people with Alzheimer's disease.
> Additionally, Faith in Action staff has recently received dementia
> care training.
>
> ADDGS Contact Information. For additional information contact ADDGS
> Project Director [*Pam
> Catt-Oliason*](mailto:pcattoli@icoa.state.id.us) at (208) 334-3833 or
> the Boise Faith in Action Director [*Abby
> McLean*](mailto:abbymc@fiaboise.org) at (208) 333-1363.

**University of Alabama's Support Teams**

Support Teams are groups of volunteers organized to provide practical,
emotional, and spiritual support to persons with health concerns or
other special needs. Using a team approach, volunteers pool their
talents, creativity, time, and leadership abilities to offer much more
support than one volunteer can provide alone. Services vary based on
individual/family needs and the interests and availability of Support
Team members. Teams may provide transportation to appointments, run
errands, prepare meals, visit, calls, provide respite for the caregiver,
yard work or shopping. Teams may also offer music, social outings, help
with computer needs, or help with patient advocacy. Team empower Friends
(recipients) do what they enjoy doing, focusing on improving quality of
life.

Support teams are organized around four major principles. Volunteers are
asked to: 1) do what they enjoy doing, 2) when they are able to do it,
3) in a coordinated way, 3) with a built-in support system. These
principles recognize that: 1) different volunteers have different
talents to contribute to people who need help; (do what they enjoy
doing); 2) people can only provide assistance to others when it makes
sense within the context of the rest of their schedule (when they can do
it); 3) supporting individuals in need requires an organized and
coordinated approach (in a coordinated way); and 4) volunteers and care
recipients may need assistance in confronting end-of-life and other
issues (with a built in support system).

The size of the Support Team varies based on the situation and the need.
Teams average 6-12 members. Each Support Team has its own volunteer
leader or co-leaders and its own volunteer coach. Following an
orientation, each Support Team meets monthly for 59 minutes and actively
participates in ongoing communication, education and coordination.
Support Teams have been successfully created through a wide range of
organizations including congregations, retirement communities, civic
groups, neighborhood groups, schools and businesses and hospice
volunteer programs to provide volunteer in-home services including
respite services.

The Support Team Network is a national organization based at the
University of Alabama at Birmingham. Developed by Rev. Malcolm Marler,
the Support Team Network provided education and support for
organizations, groups and communities seeking to create Support Teams.
Through Leadership Training Conferences, the Support Team Network has
empowered more than 3,000 persons from 40 states to start Support Teams
that have served more than 5,000 persons since 2000.

The Support Team Network has partnered with Project Compassion in Chapel
Hill, NC to provide Support Team materials and leadership trainings in
communities across the country. Please visit the [Support Team
Network](http://www.supportteam.org/) for more information. You may also
view a presentation by Dr. Marler titled, ["A Support Team Initiative: A
Plan for Caring for Persons with Health Concerns or Other Special
Needs"](http://images.main.uab.edu/ctn/STIIntro.ppt) about Support
Teams.

Contact Information: For additional materials or information about
Support Team Leadership Training, contact [*James L. Brooks,
M.Div.,*](mailto:james@project-compassion.org) Director of Team
Development and Leadership Development, The Support Team Network, (919)
402-1844 or
[www.project-compassion.org](http://www.project-compassion.org/).

> **ADDGS Example:** *Alabama's* ADDGS project uses Support Teams or
> "Caring Teams." Caring Teams provide in-home and community based care
> to support caregivers and persons with Alzheimer's disease (and other
> related dementias) through shared community volunteer Caring Teams. A
> Caring Team is a group of six or more individuals that offer
> practical, emotional, and spiritual support to help caregivers
> maintain their family member or friend in his or her own home. The
> members of the Caring Teams are required to commit to the Team for one
> year.
>
> The Caring Teams have monthly meetings in order to coordinate the time
> and tasks of the team, and for the team to reflect on their
> experiences with the client. Each team has a Team Leader, and a
> Co-Captain of the week who is responsible for checking in with other
> team members to assure visits are being completed. Each of the four
> piloted AAAs in Alabama is responsible for recruiting volunteers and
> providing them with Caring Team training. Additionally, the Southern
> Alabama Regional Planning Commission, in Mobile has provided the AAA
> Alzheimer program directors the training needed to implement the
> Caring Teams in their local communities.  
>
> Contact Information. For additional information contact *Alabama's*
> ADDGS Project Director, [*Bettina
> Schmid*](mailto:Bettina.Schmid@adss.alabama.gov) at (334) 850-3006.
>
> **ADDGS Example:** *North Carolina's* ADDGS, Family Caregiver Support
> programs and community-based organization have partnered together to
> implement Support Teams as part of their outreach to community
> organizations. Support Team Leadership Trainings have been held in the
> following areas: Asheville, Chapel Hill/Durham, Charlotte,
> Fayetteville, Greenville, Shelby, and Wilmington.
>
> ADDGS Contact Information: For information on the "train the trainer"
> session sponsored by the Northwest Piedmont AAA, the Western Carolina
> chapter of the Alzheimer's Association, Senior Services of Forsyth
> County, Hospice and other community organizations contact [*Dottie
> Lyvers*](mailto:dottie.lyvers@alz.org) at (336) 725-3085. For
> information on the emerging NC Support Team Network and information
> about creating a regional or statewide Support Team Initiative,
> contact *[James Brooks](mailto:james@project-compassion.org)* at (919)
> 402-1844.
>
> ![](media/image2.png){width="2.9166666666666665in"
> height="2.009027777777778in"}**Regional Example:** Project Compassion,
> an organization that creates community and provides support for people
> living with serious illness, caregiving, end of life and grief based
> in Chapel Hill, NC has partnered with a wide range of organizations,
> including faith communities, retirement communities, civic
> organizations, hospices, hospitals, businesses and schools to create a
> regional Support Team Initiative. Since 2002, Project Compassion has
> created over 125 Support Teams with over 900 volunteers in partnership
> with more than 60 community groups and organizations. These teams have
> provided caregiving support for more than 350 individuals, including
> more than 25 of teams for individuals and families living with
> Alzheimer's. For more information about creating a regional
> initiative, contact [*Sonia
> Norris*](mailto:sonia@project-compassion.org) at (919) 402-1844.

##  

## **Publications outlining steps for establishing voluntary in-home caregiver support and respite services** 

The resources below are online publications with pertinent information
on volunteer respite programs.

-   **[Caring to Help Others: A training manual for preparing volunteers
    to help caregivers of older
    adults.](http://www.caringtohelpothers.com/html/about.htm)** *AARP,
    Interfaith Caregiver Alliance, United Way of America, Hospice
    Association of America, Alzheimer's Association. 2000.* This
    training manual is designed to help community-based organizations
    prepare volunteers to more effectively assist primary caregivers of
    older adults. Includes tips on volunteer management.

-   **[Building a Volunteer Respite Care Program: A "How To" Manual
    Especially for
    Churches.](http://insite.alz.org/advocacy/stateclearinghouse/x AoA/Volunteer Respite Program.pdf)**
    *Alzheimer's Association. Ver Hoef, Judy and Diana Findlay. 1993.*
    This training was written to implement volunteer respite programs
    administered through rural and metro churches. The manual presents
    material on volunteer respite programming.

## 

## **For More Information**

AoA's ADDGS National Resource Center is operated by RTI International
and the Alzheimer's Association.

-   For further information about the ADDGS program, please contact
    [Lori Stalbaum](mailto:Lori.Stalbaum@aoa.hhs.gov), AoA Project
    Officer for the ADDGS program.\
     

-   For additional information about this document, please contact [Kate
    Gordon](mailto:kate.gordon@alz.org) or [Natalie
    Kelly](mailto:natalie.kelly@alz.org).