**June 2003**

**[Acknowledgements]{.underline}**

The information contained in this document is based on discussions held
with State Units on Aging (SUA) about their efforts to implement the
National Family Caregiver Support Program (NFCSP). Our appreciation is
extended to the following individuals who participated in the
discussions: Tara Shaver-Jarmon, Alabama; Alice Ahart, Arkansas; Wayne
Lindley and Edward Long, California; Donielle Rooks, Connecticut; Leah
Jones, Delaware; Ron Taylor and Beverly Friedburg, Florida; Cliff Burt,
Georgia; Pam Catt-Oliason, Idaho; Betsy Creamer and Joseph Lugo,
Illinois; Virginia Morris, Indiana; Mary Walsh, Maine; Sue Vaeth,
Maryland; Mike Banville, Massachusetts; Jane Vujovich, Minnesota; Randy
Rogers, Missouri; Georgia Rohrs and Bruce Mcannany, Nevada; Chris Urso,
North Carolina; Nancy Shantz, North Dakota; Dick Leblanc and Sande
Johnson, Ohio; Alma Belzer, Oklahoma; Dan McGuire, Pennsylvania; Barbara
Kelley, South Carolina; Sonnie Udell, Utah; Hilari Hauptman and Lynn
Korte, Washington State; and Gail Schwersenska, Wisconsin.

**[About the Author]{.underline}**

Greg Link, BA, Program Associate in Home and Community Based Services at
the National Association of State Units on Aging, has over 13 years of
experience working with both state and Federal Aging programs in Florida
as a case manager and social services manager.

**This document is available on the Web at
[www.nasua.org](http://www.nasua.org/)**

For additional information, contact:

National Association of State Units on Aging

1201 15^th^ Street, N.W., Suite 350

Washington, D.C. 20005

\(202\) 898-2578

Fax: (202) 898-2583

## The Aging Network Implements the 

## National Family Caregiver Support Program 

## 

## ♦ *First in a Series of State Experience Reports on the Development of the NFCSP* ♦

## 

## 

## [Introduction]{.underline}

Since the inception of the National Family Caregiver Support Program
(NFCSP) in 2000, states have been engaged in a number of efforts to
develop or enhance a visible, comprehensive program of caregiver
services and supports. States have been challenged to incorporate the
NFCSP into the broader long term care infrastructure in the state -
including Medicaid, Older Americans Act, and state-funded home and
community based service (HCBS) program, as well as state-supported
caregiver support programs that exist side by side with the FCSP.

How the NFCSP is developed by states, the steps states are taking to
integrate it into the HCBS system, and successful implementation
strategies are topics of much interest to researchers in the field of
caregiving as well as to legislators and policy makers. In response to
this interest, a number of efforts have been launched to collect
information on the implementation of this new program. \"*Family
Caregiver Support: Policies, Perceptions and Practices in 10 States
Since the Passage of the National Family Caregiver Support Program*\",
developed by Lynn Friss-Feinberg of the Family Caregiver Alliance (FCA)
under a U.S. Administration on Aging NFCSP grant, profiles 10 states
(Alabama, California, Florida, Hawaii, Indiana, Iowa, Maine,
Pennsylvania, Texas, Washington State)[^1] and is based on interviews
with 140 stakeholders in the states. The FCA is now in the process of
conducting a fifty-state survey of the NFCSP.

This report focuses specifically on the FCSP Service Package. It is
derived from discussions held with State Units on Aging (SUAs) in
January 2003 via teleconferences following dissemination of NASUA\'s
systems development guide *Considerations for the Service Package.*
Specific questions were used to guide the discussion of the service
package and development of the FCSP in the states. The goal of this
document is to provide readers with a snap-shot of the efforts of SUAs
to develop the NFCSP and ensure its integration into the broader system
of HCBS.

**[Overview of the NFCSP]{.underline}**

The creation of the NFCSP in the 2000 Reauthorization of the Older
Americans Act for the first time requires all SUAs and area agencies on
aging (AAAs) to focus on the caregiver -- rather than the older consumer
-- and provide services primarily for the benefit of family caregivers.
The NFCSP is intended to offer a "multifaceted system" of caregiver
supports, that includes, at a minimum, the following services:
**information; assistance; individual counseling, support groups and
caregiver training;** **respite care;** and **supplemental services**
"on a limited basis, to complement the care provided by eligible
caregivers."[^2]

Two population groups are to be served by the program: family caregivers
and grandparent or older relative caregivers of children. The **family
caregiver** is defined as "an adult family member or another individual,
who is an informal provider of in-home and community care to an older
individual." A **grandparent or older individual who is a relative
caregiver** is "a grandparent or stepgrandparent of a child, or a
relative of a child by blood or marriage, who is 60 years of age or
older and...lives with the child; is the primary caregiver of the child
because the biological or adoptive parents are unable or unwilling to
serve as the primary caregiver of the child; and has a legal
relationship to the child, such as legal custody or guardianship, or is
raising the child informally."[^3]

A handful of states funded comprehensive support programs for caregivers
prior to the enactment of the NFCSP. Even so, whether the SUA previously
administered a state-funded caregiver support program for several years
or the FCSP represents the first time the SUA has focused specifically
on the needs of caregivers, all State Units on Aging have had to address
a variety of policy issues and ensure that there is a basic structure
for the NFCSP.

To be most effective, the Family Caregiver Support Program must become a
highly visible, readily identifiable program that responds to the
diversity of caregiver needs, while at the same time forging connections
to the home and community based services (HCBS) system in each state.
Since it is unlikely that the FCSP alone will be able to meet the needs
of all caregivers or respond to all the needs of an individual caregiver
over the length of his/her caregiving career, it is vitally important to
ensure the efficient and economical use of limited Older Americans Act
(OAA) funds and to take advantage of other services that may support
caregivers and help meet the needs of care recipients.

**[The NASUA Project]{.underline}**

NASUA has been funded by the U.S. Administration on Aging to assist SUAs
in their leadership role of developing statewide caregiver programs.
Through the publication of systems development guides, NASUA is
committed to assisting states in adopting a *systemic approach* to
program development. Such an approach utilizes a step-by-step method
designed to bring system components of the FCSP - *service package,
coordination, continuity, quality,* and *effectiveness* - into a
coherent whole. A systemic development approach will result in state
FCSPs that are **accessible; flexible; consumer-directed; culturally
competent;** and **integrated** with HCBS programs.

Under the guidance of a project advisory committee, made up of state
aging directors, and expert panels of researchers, academicians, and SUA
and AAA staff, NASUA is developing *Systems Development Guides* focused
on one or more of the systems components identified above. Following
dissemination of each guide to the aging network, a series of
teleconferences will be convened with State Units on Aging (SUAs) to
provide an opportunity to react to the Guide and to describe their
efforts to address these system components in their FCSPs.

**[Approach]{.underline}**

In January 2003, state units on aging were invited to participate in one
of three teleconferences. The purpose of this first series of
teleconferences is to provide SUA directors and staff charged with the
task of implementing and overseeing the development of the FCSP in the
state an opportunity to discuss FCSP implementation with NASUA staff and
colleagues in the aging network. The conference calls focused on the
systems development guide entitled *\"Systemic Development of the Family
Caregiver Support Program: Considerations for the Service Package\".*

The calls were convened on three consecutive days - January 28, 29, &
30, 2003 - and lasted for approximately two hours each. Six to thirteen
states were represented on each call, often with multiple participants
from each state. In the end, a total of 25 states (Arkansas, Alabama,
California, Connecticut, Delaware, Florida, Georgia, Idaho, Illinois,
Indiana, Maine, Maryland, Massachusetts, Minnesota, Missouri, Nevada,
North Carolina, North Dakota, Ohio, Oklahoma, Pennsylvania, South
Carolina, Utah, Washington State, Wisconsin) and more than 30 SUA
representatives (see Appendix A for a list of participants) participated
in the calls.

Discussions were prompted by six questions derived from the outcomes
identified by the project as critical for successful systemic
development of the NFCSP.

1.  What do you feel is unique about your program?

2.  What has been the biggest challenge in developing the FCSP in your
    state? What is the number one accomplishment of your program so far?

3.  What challenges have you encountered in reaching out to caregivers?

4.  What efforts has your state undertaken to:

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a.  Reach underserved family members?

b.  Respond to the diverse and changing needs of caregivers

c.  Ensure that services are provided in a culturally appropriate
    manner?

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5.  What are the pros and cons of using a standardized assessment tool
    to identify the needs and preferences of caregivers?

6.  Are you currently offering consumer-directed caregiver support
    services? Why or why not?

**[Findings]{.underline}**

Dialogue was free-flowing and candid. During the teleconferences,
participants described a broad array of methods, ideas, and approaches
to program implementation. Common themes and unique innovations
developed by states to grapple with the complexities of program
development emerged from the discussions. Participants expressed
enthusiasm about the opportunity to hear what other states had been
doing. All participants agreed to share ideas, information, and newly
developed materials with NASUA and each other.

Highlighted below are some of the approaches to **program development**
taken by states. **Challenges in program implementation** encountered by
some states along with **program accomplishments** and **trends** are
also discussed. Examples of the approaches some states have taken to
ensure that their FCSPs are *integrated*, *accessible*, *flexible*,
*culturally competent*, and *consumer-directed* are also presented.
Finally, **emerging trends** in the areas of caregiver assessments, data
collection and web-based technology, identified by states during the
calls, are highlighted.

In general, FCSPs have been developed to be responsive to the unique
state infrastructures currently in place and to the specific needs of
caregivers identified by both formal and informal information gathering
processes. The distinct programs that have emerged attest to the
commitment of the aging network to support the work of caregivers in
ways that respond to their individual situations.

**[Program Development Approaches]{.underline}**

The flexibility afforded by the NFCSP has allowed states to focus on
such issues as developing new infrastructures for caregiver support;
re-organization of the state aging network to be better able to
integrate the NFCSP; and developing partnerships with entities not
traditionally part of the state\'s aging network. Examples of unique
approaches states have used include:

-   **Developing program policies and ensuring staff competencies up
    front**. *Wisconsin* developed *standards* for the NFCSP across the
    state stipulating that all five services are to be provided in any
    given area. Local infrastructures were developed ahead of services
    being provided. The state has also worked to raise the level of
    expertise of its I&As through a certification process that requires
    staff to meet certain core competencies.

-   **Developing a regional structure.** *Massachusetts* has required
    AAAs in specific geographic areas to *network together to form
    regions*. Once established, each region employed a *regional
    coordinator* to work together with other regional coordinators and
    with the FCSP coordinator at the SUA as a team.

-   **Enhancing communication within the state aging network.**
    *Alabama* and *North Carolina* are utilizing \"*list-serves*\"
    (available to SUA and AAA staff) and instant messaging services
    provided by an Internet service provider to promote dialogue and
    exchange of information between AAAs and with the SUA. North
    Carolina also uses bi-monthly video conferences through the state\'s
    university system to provide training and facilitate information
    sharing in the aging network.

-   **Upgrading statewide information databases.** Missouri has allowed
    its 10 AAAs to utilize some NFCSP funds to purchase software to
    develop a *statewide* database for coordinated information and
    assistance.

-   **Developing statewide coalitions.** *Utah* invited service
    providers -- including the Adult Day Care Association, Home Health
    Association, Hospice Association - to come together to identify
    *opportunities to educate*, gather and disseminate *information*,
    and develop *resources* for caregivers.

-   **Partnering with educational institutions.** *California* has
    engaged the University of California, Berkeley to conduct *research
    on best practices* in providing caregiver services; conduct
    inventories of *caregiver resources* available in California; and
    convene *focus groups* to better understand the needs of various
    sub-populations of caregivers.

-   **Using non-traditional service providers.** *Florida* has
    encouraged its 11 AAAs to utilize *civic groups, faith based
    organizations, grandparent programs* and other types of agencies *as
    providers* of caregiver services to ensure that those services are
    relevant to the needs of particular populations.

-   **Funding mini-grants.** *Maine* has required *its AAAs to offer
    mini-grants to community organizations* to develop *public service
    announcements and training and education* for caregivers in their
    respective communities.

-   **Developing \"*joint activities with statewide impact\".*** The
    five AAAs in *Maine* have pooled resources to develop radio spots
    and a statewide logo for the program, and print a state-specific
    caregiver guide entitled *\"Connections, A Guide for Family
    Caregivers in Maine\".*

**[Challenges in Program Implementation]{.underline}**

State Units on Aging identified challenges they have encountered in
implementing this new program. Many states cited similar challenges but
the discussion revealed state-specific differences in the way the
challenges were addressed and whether the challenge was statewide or an
issue in only some regions of the state. Challenges included:

-   Changing the **mindset** of case managers, program managers, and
    direct care staff who have difficulty accepting the caregiver as the
    client.

-   Developing comprehensive programs with **limited budgets**.

-   Reaching and serving caregivers in all areas of the state,
    especially **rural areas**.

-   Reaching **employed caregivers** and **employers** of working
    caregivers.

-   **Reaching caregivers** at a point when they are most likely to
    accept help and before they are in crisis.

-   Gaining a better understanding of the dynamics at work in caregiver
    situations and how to handle **family conflict**.

-   Balancing **flexibility** with the need for structure in the design
    of the NFCSP.

-   Meeting the **match requirements** associated with the NFCSP at a
    time when most states are experiencing severe budget challenges.

-   Reaching out to and serving **grandparents** and acknowledging them
    as legitimate consumers of caregiver services.

-   Developing ways of helping caregivers to **self-identify** and
    recognize the need for help.

-   Striking a balance between inadequate and excessive **data
    collection**.

-   Responding to differences in AAAs\' **program resources** and the
    impact on FCSP program implementation.

-   Defining each of the **services** offered in the NFCSP and ensuring
    that each service is provided.

-   **Coordinating** state programs with the new NFCSP while avoiding
    duplication of services and conflicts in program administration.

-   Developing **culturally sensitive** service options for all
    caregiver populations.

**[Program Accomplishments]{.underline}**

In the relatively short period of time states have had to implement the
NFCSP, most SUAs report significant accomplishments in program
development and integration of FCSP services into the broader landscape
of HCBS. Some of the broad accomplishments cited by participants
included:

-   Enabling the NFCSP to have clear recognition throughout the state as
    a result of outreach efforts and public awareness campaigns.

-   The enhanced sense of working together among all players in state
    aging networks including the SUA, AAA, and local providers.

-   The successful development and provision of the five services
    identified by the NFCSP as essential for comprehensive caregiver
    support.

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-   The adoption of consumer-directed approaches to serving caregivers
    whenever possible.

**[State Activities to Develop the NFCSP]{.underline}**

Central to the structure of the *systems development guide* completed by
NASUA is the focus on key issues impacting how the service package is
developed and how it relates to all of HCBS in a given state. During the
teleconferences, states discussed the steps they have taken to ensure
that the FCSPs developed in their states are integrated, accessible,
flexible, culturally competent, and, where possible, consumer directed.
Whether or not states had prior experience with developing systems of
caregiver support through state or other sources of funding,
participants on the conference calls acknowledged that guidance with
program development is a particular need if the NFCSP is to become an
effective part of a state\'s HCBS system.

To maximize the effectiveness of the FCSP, states should build on the
existing home and community based services infrastructure - including
state-funded caregiver programs, other aging services programs, and the
full range of HCBS. Collaboration and coordination between FCSPs and
HCBS programs is more likely to produce a long term care system that
addresses the needs of both caregivers and care receivers.

***Integration***

States reported a number of efforts all focused on integrating the NFCSP
into the existing HCBS infrastructure. Some approaches involved blending
the FCSP with other existing services while others incorporated the
program in a way that allowed it to stand on its own as a unique program
yet still be connected to the broader array of HCBS.

**Ohio** has approached integrating the FCSP by broadening its state
care coordination policy to include many of Ohio\'s Federally and
state-funded programs for older adults and caregivers. This new
framework fosters awareness of the similarities among programs and draws
attention to the under-served and unidentified caregivers in other
programs. As the FCSP becomes integrated into the continuum of care
already in place, a more seamless approach to service provision will
result.

For **Arkansas**, implementing the NFCSP and integrating it with HCBS
resulted in the AAAs coming together to work on a number of different
projects with mutually beneficial outcomes. Developing a statewide web
site and a single phone number for caregivers to call for access to
services and supports was accomplished. The AAAs also came together to
enlist the help of an advertising agency to do focus groups to enable
them to gather information on program needs.

**North Carolina** has pulled together a statewide steering team of
members drawn from private industry, universities, the County
Commissioner\'s Association, a state legislator, a local provider,
funding foundations, and others. Together, this team meets bi-annually
with SUA and AAA staff and partners to work on ways to raise awareness
of caregiver issues across the state and within individual team
member\'s respective constituencies.

**Minnesota** has utilized the development of the NFCSP to encourage
AAAs, counties, providers and community organizations to examine other
programs (Medicaid waiver, state respite programs, community service
development grants) to ensure that the NFCSP and HCBS programs offer a
complementary array of services.

**Georgia**, in collaboration with the Rosalynn Carter Institute for
Human Development (RCI), has utilized demonstration grants available
through the NFCSP to expand a collaborative network of professional and
family caregiver groups known as Care-Nets. Composed of educational
institutions, businesses, and family caregivers, Care-Nets develop
service and educational programs to meet the needs of caregivers,
oversee research conducted by RCI, and provide recognition and support
for caregivers.

**Pennsylvania** sees the NFCSP as a vehicle for expanding the scope of
the existing state-funded caregiver support program and maximizing
opportunities to get consumers into, and help them to navigate through,
the long term care system.

##### Accessibility

Coordination of the FCSP and other HCBS programs is key to assuring
access and reaching caregivers, as is developing partnerships with
business, religious, ethnic, social service and community organizations.
All participants on the teleconferences reported that ensuring
accessibility to FCSPs was a primary focus in the program\'s
development.

States reported similar ways of ensuring that their FCSPs are accessible
to anyone seeking information and services. *Public awareness campaigns,
the development of print materials and web-based information* are
mainstays of states' efforts to ensure they got the word out on
caregiver services. States\' efforts to ensure accessibility include:

-   **Alabama's** \"care coordinators\" have taken a grassroots approach
    to doing outreach. Because a majority of the care coordinators have
    some direct experience with caregiving (either in the past or
    currently), they are able to meet caregivers where they are and use
    their personal experiences with caregiving as a tool for outreach
    and education.

-   **Alabama, California, Delaware, and Massachusetts** have all
    utilized the concept of a "*mobile van tour*" to reach remote,
    hard-to-access areas of their states where caregivers have little
    opportunity to receive information, or because of the remote
    location, have difficulty getting to a central point such as a
    service center to obtain information and service.

-   **Delaware** has employed a multifaceted approach to ensuring access
    by holding outreach events and posting ads in newspapers. Newspaper
    articles showing the human side of caregiving have proven successful
    in speaking directly to caregivers and encouraging them to seek
    help.

-   **Georgia's** AAAs joined together to use some of the NFCSP funds to
    develop a magazine entitled *Georgia Generations.* Published
    quarterly, the magazine includes a section for each AAA devoted to
    services in their area in addition to the general information useful
    to caregivers across the state. Magazines are available in
    non-traditional venues such as doctor's offices, pharmacies and
    other places caregivers may frequent but where outreach might not
    have occurred before.

-   In ***Illinois,*** the AAAs designated "*Family Caregiver Resource
    Centers*" to serve as visible entry points for caregiver services.
    The centers may be located in a variety of organizations including
    senior centers, case management units, county health departments,
    and libraries.

-   **Indiana** has looked to libraries in rural communities to make
    information available via computer and has published newsletters,
    held training sessions, convened support groups for caregivers and
    distributed printed materials to caregivers.

-   **Maine\'s** five AAAs have a single, toll-free number that can be
    called from both within and outside the state. Calls about caregiver
    services made from within the state are connected directly to the
    family caregiver coordinator at the appropriate AAA. Calls from
    outside the state to the toll-free number are connected to the AAA
    serving the region where the caregiver resides.

-   **Maryland** has adopted a proactive strategy of reaching out to
    caregivers early, before they are in crisis. To achieve this,
    printed materials (e.g., bookmarks) have been printed and
    disseminated broadly to promote the program to a wide group of
    prospective consumers of caregiver services.

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-   **Massachusetts** has developed an information and assistance
    program called the \"Elder Care Advice Program\". This enhanced case
    management program has been adopted by all AAAs in the state and is
    available to family caregivers new to the role of caregiving. This
    short-term, intensive, one-on-one assistance provides family
    caregivers with either phone consultations or an in-home
    assessment/visit to identify elder care needs and provide targeted
    information and referral resources.

-   **Nevada and North Carolina** have developed caregiver web sites.
    Nevada devotes part of the state\'s \"elder care help line\" to
    dealing solely with caregiver issues. North Carolina\'s SUA web site
    has a caregiver site with FCSP and demographic information and links
    to a nationally recognized web site developed by one of the AAAs
    containing resources for family caregivers

-   **North Carolina** has experienced success in developing a common
    logo and tag line for the FCSP as a way to assure that those
    accessing services are getting NFCSP information. The logo is being
    used on all materials and any products being sponsored or
    co-sponsored by the FCSP as a way to promote recognition of the
    program. Currently, five states (AK, AZ, MN, SC, and UT) have
    adopted North Carolina\'s logo and five additional states (LA, MO,
    NJ, WA, and WV) are considering adopting the logo.

##### 

##### Flexibility

Within the broad service categories of the NFCSP, states are expected to
design programs that are tailored to diverse community needs, as well as
the varied needs and preferences of caregivers. Each State Unit on Aging
must decide how much flexibility to give Area Agencies on Aging to
encourage the development of local variability in the program reflective
of each community's needs and preferences, while at the same time
ensuring caregivers access to a high quality, readily identifiable
program of supports no matter where they live in the state.

-   Rather than using a one-size-fits-all approach, the **Alabama** SUA
    targets technical assistance and direction to AAAs that have not
    previously provided caregiver support. AAAs with caregiver
    experience have been creative in addressing the needs of the areas
    they serve.

-   **Illinois** gave AAAs the flexibility to designate the Family
    Caregiver Resource Centers in their area and design the type of
    service delivery model best suited to the strengths of the region.
    This approach has ensured easier identification and recognition of
    entry points by caregivers seeking services in each community.

-   **Maine and Maryland\'s** AAAs have a great deal of flexibility with
    respect to how they design their NFCSPs. They work within the
    parameters of the program and are monitored by the SUA to ensure
    program requirements are fulfilled.

-   The twelve AAAs in **Ohio** are given wide latitude to develop their
    own programs. Each AAA has assessed the predominant needs of the
    community and addresses them in the program plan.

-   In **Oklahoma,** the eleven AAAs have embraced flexibility to
    develop unique programs responsive to the areas they serve.

-   **Pennsylvania\'s** embrace of flexibility extends to caregivers who
    are not limited to a list of service options but have broad
    flexibility to identify the services they want to receive.

-   **South Carolina** assembled a statewide taskforce to develop
    principles and guidelines for the NFCSP across the state. The AAAs
    were then given flexibility within the guidelines to design and
    implement the program. As a result of this approach, a consumer
    focus in service provision and consumer-directed options are
    emphasized.

##### 

##### Cultural Competency

State leadership is needed to ensure that the issues of culture and
ethnicity are recognized and addressed in all parts of the state, while
at the same time permitting each AAA to find the solution that works
best for them. States participating in the teleconferences reported
varied efforts to ensure that their FCSPs respond to the diverse needs
of caregivers in their states. From convening focus groups of diverse
populations to learn about specific needs and preferences to developing
better, more effective training programs, states have made significant
strides in achieving FCSPs that are culturally competent. Specific
efforts in this area include:

-   **Florida** developed an \"Outreach Resource Center for Culturally
    Diverse Elders\". The Center targets consumers and caregivers with
    information regarding Medicare fraud and abuse. Florida believes
    that providing information in one area opens the door to other
    opportunities to learn about services that are available.

-   The **Illinois** FCSP launched an aggressive public relations
    campaign and worked with trusted local organizations and businesses
    in diverse communities, including targeted outreach to the Spanish
    speaking community. Illinois is also involved in a demonstration
    project attempting to use story boards as a method of relating
    complex messages to diverse populations. Grandparents raising
    grandchildren (GRG) is an important emphasis of the state\'s NFCSP.
    Both SUA and AAA staff have developed expertise in working with this
    particular group which has included a number of on-site training
    activities at the AAA regarding GRG issues. As providers learn more
    about aging and children\'s services, a \"family system model\" is
    emerging that will hopefully foster recognition of the differing
    needs of all members of the caregiver\'s family.

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-   *In **Massachusetts***, the Boston AAA developed an RFP to award
    three \$50,000 grants for specialized targeted outreach to specific
    diverse groups. The groups awarded the funding are doing *outreach
    to Chinese and Cape Verdean families and caregivers, and gay/lesbian
    caregivers*.

-   **Missouri** is working with focus groups convened in conjunction
    with universities and medical schools in the state to refine what
    caregivers say they need and develop materials that will reach
    diverse populations in a culturally appropriate manner.

-   **North Dakota\'s** Native American population has traditionally
    been reluctant to accept caregiver services. Therefore much of the
    work being done, especially with grandparents raising grandchildren,
    is focused on helping consumers overcome their fears of the system.

-   **Oklahoma** works closely with the Title VI programs to develop
    educational programs and support groups for Native Americans and
    tribal elders.

-   **South Carolina** utilizes local groups and agencies already
    serving diverse populations to assist with getting the word out
    regarding caregiver supports for diverse populations and
    grandparents raising grandchildren. The faith community has been
    especially helpful in this area, most likely because of the level of
    trust most individuals feel toward places of worship.

-   The **Washington State** FCSP is actively working with a number of
    ethnic communities across the state. A two-day conference entitled
    \"Washington Tribal Aging Issues and Answers Conference\" held in
    April 2003, was convened in conjunction with all the tribes in the
    state. *A 60-page family caregiver handbook developed by the state
    has been translated into Russian, Chinese, and Spanish*. Most AAAs
    in Washington have also developed caregiver kits, with some having
    been translated into a variety of languages.

-   **Wisconsin** has a significant Russian immigrant community
    interspersed with African American and Latino communities in
    Milwaukee county. The AAA in Milwaukee sent out a RFP to operate
    what has become known as the \"Caregiver Neighborhood Network\". The
    Network functions as a coordinator of services for all population
    represented in the consortium.

##### Consumer Direction

To assure a tailored response to each individual caregiver, the FCSP may
choose to adopt a consumer-directed approach. A philosophy of consumer
direction assumes that informed caregivers are able to decide for
themselves what kinds of supports they need.

Teleconference participants reported a wide range of consumer-directed
initiatives currently underway in states. Some states are exploring the
use of vouchers on a somewhat limited basis for respite while other
states are putting caregivers in charge of hiring, managing and paying
their own workers with monies from the FCSP. Specifically,
consumer-directed activities were reported in the following states:

-   **Georgia** applied for and received an AoA Competitive Grant under
    the NFCSP to develop a self-directed care program for non-Medicaid
    older persons. Five of Georgia\'s AAAs are piloting the project. It
    is hoped that after the three-year demonstration is completed, more
    than one model of self-directed care will be developed that can
    serve as examples for replication in other areas of the state as
    well as in other states.

-   **Indiana and Ohio** are working towards incorporating more
    consumer-directed options into their FCSPs through the use of
    vouchers to caregivers for the purchase of services.

-   **Maryland** permits AAAs to use a variety of payment options
    including vouchers (although none of the AAAs in the state is using
    them as yet), direct payments to families, and payments to
    providers. Family caregivers may choose their own service providers,
    including other family members.

-   **Missouri** is offering an option in its NFCSP to allow caregivers
    to have a friend or family member provide the care. Background
    checks of potential providers are required consistent with other
    state-funded services.

-   ***North Dakota*** is offering consumer-directed options for respite
    services under the NFCSP. Consumers have complete freedom to decide
    who the provider of service will be, including family members. Per
    client funding is limited to \$*1900 per year* and the consumer
    chooses among available providers that offer competitively priced
    services.

-   **Oklahoma** has established a voucher program for caregivers.
    Caregivers use vouchers to pay a respite provider of their choosing,
    including family members, at an hourly rate they establish.
    *Vouchers are in the amount of up to \$400 for three months*.

-   **South Carolina** allows caregivers to identify and hire their own
    respite providers. This has been well received by caregivers across
    the state, especially in rural areas with few service providers.

-   **Washington State** funded an innovation grant under the NFCSP
    under which one AAA experiencing difficulty finding respite
    providers in rural areas is researching and developing a program to
    allow caregivers to employ individual providers. Incorporated in
    this model is paid training for the provider and background checks
    on service providers.

##### Emerging Trends.

Among the issues states are grappling with, the use of **assessment
instruments** and ensuring relevant **data collection** were identified
as among the most challenging at the time the teleconferences were held.
States varied with respect to whether assessments of caregivers were
conducted and, if so, the type of information collected and when the
assessments are used.

Because caregivers often come from varying backgrounds, ages,
relationships, and caregiving situations, the challenge most often
encountered with designing a tool is keeping it concise and ensuring it
collects the \"right\" information. For those states utilizing an
assessment tool for caregivers, the issues of paramount importance are
that the tool be kept brief and that it be easy to administer.

The U.S. Administration on Aging (AoA) has collected information on
assessment tools and posted that information on their web site
([www.aoa.gov](http://www.aoa.gov/)). Descriptions of those assessment
tools are included in Appendix B of this report. Some examples of what
states have done with respect to assessments include:

-   **Alabama** is collecting information on the caregiver situation and
    caregiver needs. Some social workers have added questions to collect
    information they feel particularly necessary.

-   **Pennsylvania\'s** comprehensive assessment tool collects caregiver
    information for the state-funded and National Family Caregiver
    Support Programs as well as all HCBS programs in the state and is in
    the process of automating the data collection. (Pennsylvania\'s
    assessment tool is available on the AoA web site)

-   **Utah** has worked with the AAAs in the state to develop an
    assessment instrument based on the work of Canadian caregiving
    researcher Nancy Guberman, et.al. (see Appendix B for more
    information). Care has been taken to focus the data obtained by the
    six-page form on the caregiver\'s specific situation and needs.

-   **Washington State** utilizes a four-page caregiver contact form to
    collect information on the caregiver. In April 2003, a new case
    management assessment form that includes questions about potential
    needs of caregivers will be implemented in all HCBS programs.

> Examples of what states have done with respect to data collection
> includes:

-   **Alabama and North Carolina** have developed one-page instruments
    designed to collect basic demographic information on caregivers for
    the state\'s reporting system.

-   **Delaware and Maryland** have developed a tool that enables the SUA
    to gather the information needed to meet reporting requirements on
    the FCSP.

-   **Massachusetts** is piloting an assessment instrument that collects
    basic demographic and contact information on caregivers.
    Approximately three-fourths of the AAAs in the state are using some
    version of the instrument being piloted by the SUA.

-   **South Carolina** has developed and is piloting a web-based data
    collection system designed to meet NFCSP reporting requirements.
    Accessible via the Internet, regional staff are able to capture
    personal, health, and employment data on caregivers and can track
    information pertaining to the authorization and expenditure of NFCSP
    funds.

The enhanced use of **web-based technology** to provide information and
support the work of caregivers appears to be a growing trend. Two
specific examples were mentioned during the teleconferences:

-   The **Illinois** SUA has expanded its web site
    ([www.state.il.us/aging/default.htm](http://www.state.il.us/aging/default.htm))
    to include caregiver information. Users accessing the site can be
    linked directly with the AAA in their area.

-   **Maryland** has developed and launched internet-based message
    boards for caregivers. While not interactive, these message boards
    are part of the caregiver web page that includes resource
    information on a variety of topics. The message boards will enable
    caregivers to post information about their specific caregiving
    situations and share proven caregiving \"tips\" that they have found
    useful.

**Appendix A**

**Teleconference Call Participants**

**[January 28, 2003]{.underline}**

**Illinois**

Betsy Creamer

Joseph Lugo

**Maryland**

Sue Vaeth

**North Dakota**

Nancy Shantz

**Ohio**

Dick LeBlanc

Sande Johnson

**Oklahoma**

Alma Belzer

**South Carolina**

Barbara Kelley

**Wisconsin**

Gail Schwersenska

**[January 29, 2003]{.underline}**

**Arkansas**

Alice Ahart

**Alabama**

Tara Shaver-Jarmon

**Delaware**

Leah Jones

**Massachusetts**

Mike Banville

**Missouri**

Randy Rogers

**North Carolina**

Chris Urso

**[January 30, 2003]{.underline}**

**California**

Wayne Lindley

Edward Long

**Connecticut**

Donielle Rooks

**Florida**

Ron Taylor

Beverly Friedburg

**Georgia**

Cliff Burt

**Idaho**

Pam Catt-Oliason

**Indiana**

Virginia Morris

**Maine**

Mary Walsh

**Minnesota**

Jane Vujovich

**Nevada**

Georgia Rohrs

Bruce Mcannany

**Pennsylvania**

Dan McGuire

**Utah**

Sonnie Yudell

**Washington State**

Hilari Hauptman

Lynn Korte

**Appendix B**

**Caregiver Assessment Tools and Information**[^4]

  -----------------------------------------------------------------------

  -----------------------------------------------------------------------

This section highlights resources described on the AoA web site
([www.aoa.gov](http://www.aoa.gov/)). These resources may be helpful to
states wanting to develop assessment tools for assesing the needs of
caregivers. Three caregiver assessment instruments have been identified
by AoA.

**1. Caregiver Assessment Screen/Caregiver Assessment Tool (Canada)**

Developed in Canada by Nancy Guberman, Janice Keefe, Pamela Fancey,
Daphne Nahmiash, and Lucy Barylak, the [Caregiver Assessment
Screen]{.underline} may be used to determine whether a caregiving
situation is \"at risk\" and the level of urgency required for
intervention. The screening form takes about 15 minutes to administer
and may be used over the telephone. A second, more comprehensive
instrument called the [Caregiver Assessment Tool,]{.underline} is
designed to collect information about many different aspects of the
caregiver\'s situation, identify key areas of difficulty being
experienced by the caregiver, and the types of services and support that
would best assist the caregiver. This usually takes about 90 minutes to
administer. These tools may be accessed at:

<http://www.msvu.ca/Family&Gerontology/Project/Instruments.htm>

It is recommended that you read the report on the development, testing
and utility of this set of assessment tools for family caregivers. The
report can be accessed at:

<http://www.msvu.ca/Family&Gerontology/Project/reports.htm>

**2. Caregiver Assessment Forms and Instructions (PA Department on
Aging)**

The Pennsylvania Department on Aging's Caregiver Assessment Forms and
Instructions \[[PDF version](../PA-CGAssessmentFormsandInstructions.pdf)
on the AoA web site\] - This material, distributed at AoA's 2000
Symposium \"Building an Aging Network Toolkit\", is part of
Pennsylvania\'s Comprehensive Options Assessment instrument.

**3. Caregiver Assessment Tool and Instruction Manual (California)**

These assessment materials were developed by the Family Caregiver
Alliance (FCA) and are used by the California\'s Caregiver Resource
Centers (CRCs) to examine the needs of families caring for adults
suffering from chronic brain disorders (e.g., Alzheimer's disease,
stroke, Parkinson's disease, traumatic brain injury). FCA trains all
staff expected to conduct caregiver assessments. To obtain a copy of
these materials, please send a request to Lana Sheridan, Family
Caregiver Alliance, National Center on Caregiving, 690 Market Street,
Suite 600, San Francisco, CA 94104. Include a check for \$25.00 to cover
handling, printing, and shipping costs.

[^1]: *Family Caregiver Support: Policies, Perceptions and Practices in
    10 States Since passage of the National Family Caregiver Support
    Program.* Lynn Friss Feinberg, MSW, Sandra L. Newman, MPH, and Carol
    Van Steenberg, MSS. Family Caregiver Alliance, November 2002.

[^2]: Older Americans Act, Title III, Part E, Section 373 (b).

[^3]: Ibid., Title III, Part E, Section 372.

[^4]: Source: U.S. Administration on Aging Web Site.
    [www.aoa.gov](http://www.aoa.gov/).