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Outreach and People with Disabilities
from Diverse Cultures: A Review of the Literature National
Council on Disability
Cultural Diversity Initiative
1331 F Street, NW, Suite 850
Washington, DC 20004
202-272-2004 Voice
202-272-2074 TTY
202-272-2022 Fax
Lex Frieden, Chairperson
November 20, 2003
Contents
Executive Summary
I. Introduction
Background
Method and Scope
II. Prior NCD Diversity Reports and
Findings
III. Definitions of Outreach
IV. Principal Themes of Outreach
Value Placed on Target Population
Assessment of Needs
Advocacy
Transformation of social behaviors/attitudes
Dissemination of information
Strengthening communities
V. Outreach Models.
Community-based
Grassroots
Train-the-Trainer
Peer-to-Peer
Partnership
Support Socialization
VI. Summary of Findings of the
CDI Resource Mapping Project
VII. Challenges to Outreach
Lack of Culturally Appropriate Outreach
Limited Funding
Lack of an Assessment of Needs
Failure to Engage Local Leaders
Failure to use Peers
Language and Communication Barriers
Attitudinal barriers
Shortage of individuals from diverse cultures in disability services
professions
Lack of information about resources
Lack of Coordinated Services
Limited Use of Client Focused Services
Demographics
Limited Attention to Interconnectivity
Cultural Competence
Different Cultural Constructs of Disability
Collectivist vs. Individualistic Orientations
VIII. Findings and Recommendations
IX. Conclusions
X. References
XI. Appendices
A. Examples of Outreach Programs, Models, and Strategies
B. Mission of the National Council on Disability
Acknowledgements
The National Council on Disability expresses its appreciation
to Theda Zawaiza, Ph.D. and Claudia Gordon, Esq., for drafting this
paper, with research assistance from Phuonglinh Dang. Additional
thanks are extended to Glenn Fujiura, Ph.D., Paul Leung, Ph.D.,
and Lilliam Rangel-Diaz for reviewing and providing comments on
an early draft of this paper.
Executive
Summary
Overview. People with disabilities
who are also from diverse cultures are significantly hampered in
realizing outcomes of full participation in all aspects of society
due to a host of barriers to the benefits of civil and human rights.
A small but growing body of research on this issue indicates that
barriers include the lack of culturally appropriate outreach, language
and communication barriers, attitudinal barriers, and the shortage
of individuals from diverse cultures in the disability services
professions (National Council on Disability, 2000b). While strategies
for reaching out to people with disabilities exist (Hasnain, Sotnik,
and Ghiloni, 2003; Edwards and Livingston, 1990), research-based
evidence is sparse regarding interventions aimed at eliminating
barriers. Even more scant is research on outreach as a compelling
strategy and its degree of efficacy in engaging people from diverse
cultures and ultimately, improving outcomes.
The objectives of the review were to articulate the
principal themes of outreach, describe outreach models, illuminate
the many challenges to effective outreach, and to document the nature
and prevalence of national disability/diversity outreach by the
federal government. The research literature was systematically searched
and a preliminary scan of nine federal agencies' disability/diversity
outreach activities was conducted using a resource mapping inquiry.
Background. For over a decade,
the National Council on Disability (NCD) has worked to make national
disability policies, laws, programs, and services more responsive
to people with disabilities from the broad array of cultures that
enrich our country. Despite concerns regarding the prevalence of
disabilities and health disparities among people with disabilities
from diverse cultures, there remains a significant gap in the empirical
knowledge base about promising practices in delivering effective
services to these diverse groups. As a part of its Cultural Diversity
Initiative (CDI), NCD sought to answer fundamental questions about
outreach: What is it? What are current outreach definitions, themes,
models, and challenges? What is the state of disability/diversity
outreach at the national level by the federal government? This review
of literature was one of three projects of the NCD CDI, along with
an outreach forum held in July 2003, designed to inform the development
of the third component - an outreach toolkit for use by federal
agencies to enhance their outreach efforts.
Findings. The review showed
a paucity of empirical studies of outreach as an intervention and
few studies evaluating the effectiveness of outreach activities.
While there is an extensive body of literature documenting and reporting
on racial and ethnic health disparities, there were relatively few
studies on outreach as an intervention. The review identified operational
definitions of outreach and principal outreach themes found in the
literature. Types of outreach were described, and examples provided.
The challenges of outreach are discussed within the framework of
barriers to access and appropriate services for full community integration
and independent participation by people with disabilities from diverse
cultures. Major findings include:
- Outreach, as an intervention, is a frequently recommended
strategy designed to improve services to underserved groups, but
about which little is known empirically. Proponents claim various
outreach models show promise, but the lack of consistency across
studies makes it difficult to generalize about the effectiveness
of any given approach. Rarely is the term "outreach" operationally
defined or empirically studied, making it an elusive, yet ubiquitous
construct.
- Although outreach efforts are highly eclectic,
some major themes were found to recur in the literature, including:
value placed on target population, assessment of needs, advocacy,
transformation of social behaviors/attitudes, dissemination of
information and the strengthening of communities.
- The models of outreach found in the literature
were categorized as: the community-based model, wherein focus
is placed on building the capacity of current community organizations;
the grassroots model, often using indigenous, native-speakers
in venues not typically used by service organizations; the train-the-trainer
model, in which trusted community members are trained so that
the community maintains the needed knowledge after outreach workers
have departed; the peer-to-peer model, which emphasizes the mutual
understanding of contemporaries; the partnership model which builds
on the partner's expertise and community trust, and the support
socialization model which couples outreach with popular events
to attract the community.
- Challenges to comprehensive outreach activities
include the lack of culturally appropriate outreach; failure to
engage local leaders; the lack of needs assessments; language
and communication barriers; attitudinal barriers, and the shortage
of individuals from diverse cultures in disability services professions.
- Self-reports by the nine participating agencies
did not fully capture the depth and breadth of current national
disability/diversity outreach efforts in those agencies. Several
agencies used outreach as an intervention strategy extensively
while others only utilized it periodically, if at all. Methodological
limitations constrained the ability to make definitive statements
about the nature and prevalence of outreach programs to people
with disabilities from diverse cultures.
- All of the federal agency programs and activities
addressed disability and/or diversity separately. With a single
exception, the federal agency responses to NCD's inquiry represented
only one of several offices, divisions or branches within each
agency (e.g., the U.S. Department of Health and Human Services
(DHHS) Office of Civil Rights (OCR) responded only for OCR; however,
absent were responses from other DHHS offices with established
work and track records in the area of cultural sensitivity and
outreach programs such as in the mental health area.) Not all
definitions of outreach were consistent with NCD's operational
definition provided as a part of the information given to each
agency. Finally, agency information was not always responsive
to the areas of inquiry. The combined effect of these observations
posed a challenge for a systematic analysis of the information
collected.
- Research syntheses are needed to systematically
identify and evaluate outreach programs for people with disabilities
from diverse cultures. The scarcity of such research precludes
empirically based decisions about the efficacy and effectiveness
of outreach efforts. Research syntheses are useful in that they
increase the accessibility of the research and facilitate its
interpretation and use in the field (Gersten, 2000).
The purpose of this review was to explore what research
literature tells us about outreach and its feasibility as a viable
method to reach under-served populations. It is intended to be a
resource for federal agencies and parties interested in national
outreach to people with disabilities from diverse cultures. This
data provide a preliminary, albeit spotty, scan of the state of
disability/diversity outreach at the national level by nine federal
agencies. This data can be used to encourage future dialogue and
federal interagency collaboration wherein agencies may share their
promising practices with each other and by so doing, enhance their
programs and ultimately increase involvement of people with disabilities
from diverse cultures in their programs. One of the goals of the
inter-agency dialogue on outreach to this population will include
developing a reliable and valid set of baseline data for each agency
on programs, policies, products, and procedures that agencies can
share with each other and the public, possibly in the form of a
regularly-updated CD-Rom toolkit containing resources helpful in
developing comprehensive outreach programs. The review pointed out
several gaps in the knowledge about outreach, its effectiveness
and its limitations. The following recommendations are offered to
address those gaps in knowledge.
Recommendations.
- Outreach Feasibility Studies:
The feasibility of federal agencies using outreach as a reliable
and valid strategy to reach people with disabilities should be
systematically analyzed. The prevalence of disability in diverse
cultures is significant and, in most cases, disproportionately
high. Equal representation of people with disabilities from diverse
cultures in federal programs can be enhanced by reaching out to
these populations in culturally sensitive ways, evaluating the
effectiveness of the efforts, disseminating the results and encouraging
replication of promising practices.
- Assessment of Federal Outreach
Competencies: Federal agencies should be encouraged to
undertake a comprehensive self-assessment of their outreach competencies,
and a thorough inventory of outreach practices to gauge future
training and development needs and to share promising practices,
policies, products and procedures with other federal agencies.
- Support Interagency Outreach
Collaboration: Interagency agreement and funding on outreach
knowledge information dissemination and exchange should be encouraged.
A technical expert panel comprised of interagency representatives
and grassroots leaders should be formed to develop and pilot cultural
competence standards and outreach guidelines for federal agencies
and their partners. Agencies should ensure the meaningful participation
of people with disabilities from diverse cultures in the development
of programs and strategies.
- Efficacy Research: Research
is needed to weigh the comparative effectiveness of specific strategies,
including comprehensive outreach, and improving services, access
and protections for diverse populations with disabilities.
The review provides a summary of findings from the
literature, a discussion of challenges to outreach and recommendations
to address the information and research gaps identified.
Outreach and People
with Disabilities from Diverse Cultures A Review of the Literature
I. Introduction
People with disabilities who are also from diverse
cultures are significantly hampered in realizing outcomes of full
participation in all aspects of society due to a host of barriers
to the full benefits of civil and human rights. A small but growing
body of research on this issue indicates that barriers include the
lack of culturally appropriate outreach, language and communication
barriers, attitudinal barriers, and the shortage of individuals
from diverse cultures in the disability services professions (National
Council on Disability, 2000b). While strategies for reaching out
to people with disabilities exist (Hasnain, Sotnik and Ghiloni,
2003; Edwards and Livingston, 1990), research-based evidence is
sparse regarding strategies aimed at eliminating barriers. Even
more scant is evaluative research on strategies such as outreach
and its degree of efficacy in improving outcomes for people with
disabilities from diverse cultures.
A common notion in federal disability laws and policies
developed over the past twenty-five years (e.g., Individuals with
Disabilities Education Act and the Vocational Rehabilitation Act
of 1973, as amended) is that disability is a natural part of the
human experience and in no way diminishes the right of individuals
to live independently, enjoy self-determination, make choices, contribute
to society, pursue meaningful careers and enjoy full inclusion and
integration in the economic, political, social, cultural, and educational
mainstream of society. Community integration and self-determination
are policy concepts endorsed further in President Bush's New Freedom
Initiative, Executive Order 13217 and legislative proposals.1
However, the promise of these policies has not been realized by
people with disabilities from underserved populations.
The purpose of this review was to explore what research
literature tells us about outreach and its feasibility as a viable
method to reach under-served populations. The review is an informational
piece designed to raise awareness and understanding regarding a
strategy that is highly recommended, about which little is known
empirically, designed to improve services to under-served groups.
It offers a classification schema to explore the concept and practice
of outreach. The target audience is federal agencies and parties
interested in federal outreach to people with disabilities from
diverse cultures. This review can serve as a preliminary research
base for the development of technical assistance and training on
outreach strategies.
Rationale for a Focus on Outreach.
Recurring themes in National Council on Disability (NCD) literature
include the observation that federal programs are failing to adequately
serve people with disabilities and that people with disabilities
from diverse cultures are sorely under-served. For over a decade,
NCD, in its advice to Congress, has recommended actions such as
outreach and interagency collaboration. Now it has reviewed the
outreach literature to provide federal agencies with an informational
base from which they can develop and/or enhance their provision
of services and their ability to reach underserved people.
The choice of outreach as the focus of the review
was not random; rather, it was arrived at through methodical deliberation.
Outreach is a strategy often recommended, anecdotally perceived
as promising (according to anecdotes of grassroots, disability constituencies),
and legislatively required for at least one cabinet-level department
(Department of Education). The disparities in health, education,
employment and independent living of people with disabilities from
diverse cultures are significant, well documented, and persistent
despite years of general acknowledgement. The impetus for selecting
outreach as a compelling strategy to explore was spawned by the
facts of those disparities and the confluence of several other factors:
(1) repeated recommendations for outreach in the testimony of grassroots,
disability constituencies (e.g., poor, rural, urban); (2) recommendations
from the U.S. Commission on Civil Rights in its Ten-Year Check-Up:
Have Federal Agencies Responded to Civil Rights Recommendations?;
(3) the mandate for community living (and by extension, live-able
communities) found in the Supreme Court's Olmstead decision and
the subsequent Executive Order 13217 directing its swift implementation;
and (4) the trend in the federal government toward increased program
accountability.
Civil Rights. Last
year, the U.S. Commission on Civil Rights (USCCR) reprised its recommendations
in which it expressed concern that people in particular areas and
communities were not being reached by federal programs. "The Commission
asked federal agencies to ensure that their programs reached participants
and beneficiaries in rural and inner-city areas as well as underserved
populations, such as African Americans, Asian Pacific Americans,
Hispanic Americans, Native Americans, migrant and seasonal farm
workers and their children, and women. It asked federal agencies
to find alternate or innovative methods of reaching such areas and
groups" (USCCR, 2002, p.31). The Commission requested that ".federal
agencies mount inter-agency coordinated outreach" (Ibid, p.33).
Olmstead. In the Olmstead
case, the Supreme Court found that, in certain instances, the Americans
with Disabilities Act (ADA) requires states to provide services
in the community for persons with disabilities and finds unwarranted
institutionalization of a person with a disability discriminatory
under the ADA. " The Executive Order [13217] required federal agencies
to promote community living for persons with disabilities by providing
coordinated technical assistance to states; identifying specific
barriers in federal law, regulation, policy, and practice that impede
community participation; and enforcing the rights of persons with
disabilities" (NCD, 2003a, p.4). The same NCD report, entitled Olmstead:
Reclaiming Institutionalized Lives, points out that agencies' reports
on their programs show obstacles to community-living still exist.
Outreach was offered as one of many viable agency options.
Program Accountability.
As more people with disabilities from diverse cultures live in communities
across the country instead of in institutions, federal agency programs
will be pressed to be responsive to a more diverse constituency.
Over a decade ago, Congress enacted the Government Performance and
Results Act of 1993 (GPRA) to, among other things, "improve federal
program effectiveness and public accountability by promoting a new
focus on results, service quality, and customer satisfaction" (GPRA,
1993, p. 1). GPRA required programs to have performance standards
and indicators and other means of accountability. Taken together,
these factors gave ample and compelling reason to undertake this
effort.
Background. The Cultural
Diversity Initiative (CDI) is a NCD response to begin addressing
problems highlighted in the findings and recommendations of earlier
NCD reports on the inadequacy of current systems and methods in
reaching people with disabilities from diverse cultures. CDI is
designed to provide opportunities for federal agencies and other
stakeholders to jointly identify promising outreach efforts and
strategies for including un-served and under-served populations
in the development of federal policies, programs, and activities.2
This project includes a review of the literature on
outreach and people with disabilities from diverse cultures, identification
of salient variables in current outreach efforts and a summary of
challenges to outreach. In this paper, people with disabilities
from diverse cultures refers to people with disabilities of African-American,
Hispanic/Latino, Asian/Pacific Islander, American Indian, or Alaska
Native heritage. People with disabilities from these under-served
populations often reside in inner cities or rural, tribal and/or
remote communities. They may also be economically poor, linguistically
diverse migrant or seasonal farm workers, and recent immigrants.
"People in these communities historically have been overlooked in
research, poorly served in policy and practice and consequently,
underachieve on all traditional measures of success and well-being"
(Zawaiza et al, 2002, p. 4).
Method and Scope. The
extant research and literature was reviewed and analyzed for information
on outreach. NCD conducted several searches of published literature
in ERIC databases, Emory University on-line library, Questia on-line
library and other on-line databases scanning studies from 1988-2003
that met the inclusion criteria (i.e., focused on and/or included
the key words outreach, minority, disability and/or diversity).
NCD's search topics included: outreach to people with disabilities
from diverse cultures, outreach to people with disabilities, outreach
to people from diverse cultures and outreach to various under-served
populations (e.g., people who are homeless).
Other advanced searches included specific disability
categories (e.g., diabetes) and specific races and ethnicities.
NCD conducted searches of the web sites of the nine agencies included
in the CDI project, and sites for people with disabilities from
diverse cultures to identify relevant unpublished studies, progress
reports, briefing papers, and position statements. NCD also searched
publications of several national databases. A pool of relevant literature
was scaled down to include only those publications in which an outreach
intervention was implemented or recommended for an under-served
group. Studies conducted in other countries or written in a language
other than English were excluded.
The paper identifies and discusses outreach definitions,
themes, models, and challenges. Models are included as examples
and should not be considered endorsement of any particular approach.
Further, systematic evaluation of these examples to determine effectiveness
is beyond the scope of this review; however, NCD recognizes the
importance of evaluative research and the need for sets of criteria
against which outreach approaches can be viewed. NCD found few pertinent
publications on outreach programs that targeted people with disabilities
from diverse cultures and even fewer reports that evaluated the
effectiveness of any particular approach to outreach. In essence,
the available studies on outreach did not use as their primary subjects
people with disabilities from diverse cultural backgrounds. Because
such outreach information is sparse, this review examines outreach
studies from a broader perspective.
II.
Prior NCD Diversity Reports and Findings Effective
outreach programs, which are important vehicles for communicating
public policy and involving underserved groups in the public policy
process, can not be initiated, implemented and/or sustained without
respect, understanding, and sensitivity toward racial, ethnic and
geographic diversity" (National Council on Disability, 1997, p.
2).
NCD's leadership in exploring effective ways of addressing
issues and concerns of people with disabilities from diverse cultures
has been accomplished through national and regional opportunities
for information collection from grassroots community-based groups
and individuals. For example, in 1992 NCD convened a national conference
attended mostly by persons from diverse racial and ethnic backgrounds
who considered a wide range of disability issues. Policy recommendations
were developed for improving the lives of people with disabilities
from diverse cultures and were reported to the public. In August
1998, NCD held a series of follow-up public hearings in San Francisco,
Atlanta and New Orleans to develop recommendations for improving
the ability of federal policies and programs to serve diverse communities
effectively.
Grassroots witnesses in the series of public hearings
reported that:
[T]he best way to empower minorities with disabilities
and their families to take full advantage of federal laws, programs,
and services is to provide them with easy-to-understand, culturally
appropriate information about what their rights are under various
federal laws (e.g., ADA, the Vocational Rehabilitation Act, IDEA,
the Fair Housing Act) and how best to exercise those rights when
a violation occurs (National Council on Disability, 1999, p. 3).
In another report, Lift Every Voice - Modernizing
Disability Policies and Programs to Serve a Diverse Nation, NCD
highlighted a recommendation with particular potential to promote
joint, culturally responsive federal policies, products, practices
and programs. The recommendation called for representatives from
the U.S. Departments of Education, Labor, Health and Human Services,
Justice, and Housing and Urban Development, along with the Equal
Employment Opportunity Commission, Small Business Administration,
and Federal Communications Commission to work collaboratively. These
federal agencies were challenged to develop and implement a large-scale
outreach and training program targeted to people with disabilities
from diverse cultural backgrounds and their families that would
provide information (including that referenced above as well as
information on other opportunities) directly to the target audiences
through a series of forums, workshops, and seminars across the country.
At the writing of this paper, there was no evidence of this recommendation
having been implemented.
NCD has generated the following reports that include
specific recommendations regarding implementation and enforcement
of the civil and human rights of people with disabilities from diverse
cultures: ADA Watch - Year One: A Report to the President and
the Congress on Progress in Implementing the Americans with Disabilities
Act (April 5, 1993); Meeting the Unique Needs of Minorities with
Disabilities: A Report to the President and the Congress (April
26, 1993); Achieving Independence: The Challenge for the 21st Century
- A Decade of Progress in Disability Policy - Setting an Agenda
for the Future (July 26, 1996); Outreach to Minorities with Disabilities
and People with Disabilities from Rural Communities (August 4, 1997);
Grassroots Experience with Government Programs and Disability Policy
(October 1, 1998); Lift Every Voice - Modernizing Disability Policies
and Programs to Serve a Diverse Nation (July 26, 1999); Back to
School on Civil Rights: Advancing the Federal Commitment to Leave
No Child Behind (January 25, 2000); Carrying on the Good Fight:
Summary Paper From Think Tank 2000-Advancing the Civil and Human
Rights of People With Disabilities From Diverse Cultures (August
23, 2000); Closing the Gap: A Ten Point Strategy for the Next Decade
of Disability Civil Rights Enforcement (August 10, 2000); Implementation
Plan for Executive Order 13166 - Improving Access to Services for
Persons with Limited English Proficiency (December 12, 2000); and,
People with Disabilities on Tribal Lands: Education, Health Care,
Vocational Rehabilitation, and Independent Living (August, 2003).
According to an NCD synthesis of its seven reports addressing disability
and diversity that were issued between April 1993 and January 2000,
"people with disabilities from diverse cultures have not been full
participants in our country's effort to eliminate disparities, remove
barriers, and to protect civil and human rights through enactment
of federal laws and initiatives" (National Council on Disability,
2000b, p. 2)
Subsequently, in May 2000, NCD convened Think Tank
2000: Advancing the Civil and Human Rights of People with Disabilities
from Diverse Cultures. In initiating Think Tank 2000, NCD indicated,
"years of technical assistance and model programs have not changed
the status of the most disenfranchised. Across the board, people
with disabilities from diverse cultures receive unequal protection
and unequal benefit under the same federal laws being implemented
in the larger disability community." Think Tank 2000 was a meeting
of representatives from diverse cultural, professional and disability
backgrounds charged with developing action steps for fully implementing
disability rights laws at the community level for people with disabilities
from diverse cultures and other under-served groups. Effective outreach
to people with disabilities from diverse cultures was among the
key issues addressed by the group.
Within a month of this meeting, NCD convened a second
group of participants in the Civil Rights Retreat, to build upon
the Think Tank 2000 plan of action and the Unequal Protection Under
Law series of reports.3 These participants, also from
diverse cultural, professional and disability backgrounds, were
charged with mapping out the elements of a ten-point strategy for
more effective civil rights enforcement. In summarizing the ten
point strategy, the group acknowledged that the greatest civil and
human rights laws of this country have spurred a new era of progress
for the nation, but they also recognized that much greater progress
depends upon overcoming systemic and other artificial barriers.
Select NCD Diversity Findings. The
following is a sampling of NCD diversity findings provided to highlight
the wide spectrum of challenges that exist in disability services
policy and practice relative to race and ethnicity. These are just
a few of the NCD documents addressing areas of interest to this
report. In The Well Being Of Our Nation: An Inter-Generational Vision
of Effective Mental Health Services and Supports (NCD, 2002), language
and cultural barriers were noted as follows: "Most state mental
health systems still lack the ability to serve people of color and
language minorities in their own traditions and their own language.
The Surgeon General recently reported 'striking disparities' in
mental health care for racial and ethnic minorities, and that these
disparities 'impose a greater disability burden on minorities,'
and that people from diverse cultures collectively experience a
greater disability burden from mental illness than do whites. This
burden is directly attributable to the fact that people from diverse
cultures systemically receive less care and poorer quality of care,
rather than from their illnesses being inherently more severe or
prevalent in the community."(p. 16)
Investing in Independence: Transition Recommendations
for President George W. Bush (NCD, 2001) addressed cultural
diversity by saying:
The United States consists of a diverse population
and we must make a conscious effort to meet the needs of all our
people. The Bush Administration must establish an inclusive agenda
for America that makes ongoing and emerging issues that impact
people with disabilities from diverse cultures an integral part
of all work regarding federal agency program administration and
implementation, public policy, and legislative/regulatory work.
The Investing in Independence report made the
following recommendations to effectively address cultural diversity
among people with disabilities:
[T]he best way to empower minorities with disabilities
and their families is to provide them with easy-to-understand
culturally appropriate information about what their rights are
under various federal laws.A federal interagency team should develop
and implement a large-scale outreach and training program targeted
to people with disabilities from diverse cultural backgrounds
and their families. (p. 7)
Reorienting Disability Research (NCD, 1998)
called for a refining of current data:
Ensure that the broadest range of people with disabilities
(including children, those with hidden disabilities, and minorities
with disabilities) are sampled. To understand the unique aspects
of all people with disabilities, it is critical that all groups
be adequately sampled. Frequently, too few people with a particular
disability or of a particular age or ethnicity are sampled to
allow for statistically sound analysis.
The report also recommended, with regard to the development
of new data collection instruments, that policy makers "[E]nsure
that any new disability questions reflect variations in ethnic cultural
understanding of disability." (p. 6)
In Improving the Implementation of the Individuals
with Disabilities Education Act: Making Schools Work for All of
America's Children (NCD, 1995), testing in the student's native
language and mode of communication was recognized as a critical
factor in a culturally sensitive evaluation.
Other Findings on Services to People
with Disabilities from Diverse Cultures. NCD's contention
that people with disabilities from diverse cultures are under-served
is supported by other research and reports conducted over the decade
of the 1990s. For example, researchers Feist-Price (1995) and Kundu
(1993) found that barriers such as lack of information about resources,
few culturally competent service providers, limited inclusion in
policy making, rehabilitation, or other service provider training,
and discrimination related to language, low socio-economic status,
or national origin, are not encountered to the same extent by others
in the general population or other people with disabilities. As
such, the quality of service and outcomes is less favorable for
people with disabilities from diverse cultures across our nation.
The next section of this paper presents a summary
of outreach definitions, themes, and models from a broad perspective.
This information can be used to inform the development and/or expansion
of outreach policies and strategies.
III. Definitions of Outreach
Outreach is conducted on many social levels
by numerous organizations, communities, governments, and educational
institutions. These endeavors range from disability rights training,
health education, international aid, and projects for the homeless,
to college recruitment of people from diverse cultures. Although
the term "outreach" is used to describe all of these programs, a
definition of the word is seldom found in the literature. The scarcity
of efforts to define outreach in the literature makes it an elusive
term. As a result, entities that employ outreach often interpret
and define the concept as it fits into their specific programs.
A typical dictionary definition of outreach is "a systematic attempt
to provide services beyond conventional limits as to particular
segments of a community" (American Heritage Dictionary, 1984). Other
definitions emphasize particular parts of this generic one and elaborate
on various themes; for example, definitions in the next sections
- the U.S. Department of Agriculture definition and the Advocacy
definition of outreach - both stress the under-served nature of
the targeted group. The last definitions described - categorical
definitions - emphasize the activity to be undertaken; for example,
education outreach to teach a particular skill.
U.S. Department of Agriculture.
The U.S. Department of Agriculture (USDA) defines "outreach"
as "a way of conducting business to ensure that underserved individuals
and groups throughout the United States and its territories are
made aware of, understand and have a working knowledge of . . .
programs and services. Outreach will ensure that these programs
and services are equitable and made accessible to all" (USDA, 2003,
website). Notably, the USDA points out that outreach involves a
number of components, including an understanding of the under-served
customers; using communication techniques that are most appropriate
for the under-served customers; earning the trust and acceptance
of the under-served customers; developing partnerships and working
relationships with under-served customers and their community organizations.
Advocacy. Outreach has also
been defined in terms of reaching out and assisting through personal
contacts with people excluded from, unaware of, or unreceptive to
certain information or services (Bannon, 1973). The agency can be
a social service group, local, state or federal government, educational
institution, or community group. Advocacy, an essential component
of outreach, differentiates traditional forms of community services
from programs that are conducted to develop those services. Through
advocacy, outreach programs can extend the endeavors of community
services to eradicate the problem, or at least ameliorate the situation.
Categorical. Alternatively,
Penn State University at Erie (2003) defined outreach by dividing
the concept into three categories: research, education, and service.
Research outreach refers to the dissemination of a discovery's results
or the gathering of information for a discovery. This can include
technology transfer, policy reviews, and creative works in the arts.
Educational outreach is characterized by teaching or demonstrating
an expertise in a particular subject to increase the "potential
of individuals or groups" (Penn State University at Erie, 2003,
p.1) Programs such as diabetes nutrition classes for African Americans,
mobile dental units in low-income communities, and smoking cessation
classes for incarcerated individuals are all examples of educational
outreach. Service outreach focuses on performing a function that
benefits the targeted population. These services may include HIV
testing, needle exchange for IV drug users, and prenatal care for
teenage mothers.
The definitions of outreach described above (USDA,
Advocacy and Categorical) illustrate the broad range of specifications
that organizations use to describe their efforts to connect with
under-served people. According to Edwards and Livingston a comprehensive
outreach approach has eleven features:
- Target audience(s)
- Needs assessments of the target audience(s)
- Short and long term goals and objectives for responding
to the needs
- Outreach activities that address those needs
- A timetable
- A coordinator of outreach activities
- Accurate, updated mailing lists with a specific
individual named
- An evaluation plan to monitor success
- Outreach messages and materials that are current,
easily understood, positive, structured in such a way as to lead
the receiver to "the next level" of information, need or services,
and highlight something unique and realistic
- Repetition of distinct messages in varied forms
to maximize outreach to the targeted audience
- Ongoing research, both formal and informal, for
effective outreach
(Edwards and Livingston, 1990)
Outreach efforts need not contain all eleven points
to be meaningful. Differences in definitions and applications of
outreach have enabled programs and projects to fit within broad
parameters. As such, producing a single, all-inclusive working definition
of outreach may have limited utility and may not be feasible since
the concept of the word outreach differs among organizations. However,
the literature includes recurring themes that characterize outreach.
These themes may prove to be practical ways to describe and discuss
outreach efforts as presented in the section that follows.
IV. Principal Themes of
Outreach Similar to defining the term "outreach,"
pinpointing principal themes may be challenging or problematic,
given the variability of definitions. Although the literature shows
that outreach efforts are highly eclectic, major themes include:
value placed on target population, assessment of needs, advocacy,
transformation of social behaviors/attitudes, dissemination of information,
and the strengthening of communities.
Value Placed on Target Population.
The particular population for whom the outreach program is intended
must be aware that efforts are made to welcome and include their
perspectives and respect their customs. Outreach projects usually
start with the identification of a population that would benefit
from a certain knowledge or skill (Edwards and Livingston, 1990).
From the outset, the organization conducting the outreach typically
has a special interest in the population and believes that the population
is a valued constituency.
Assessment of Needs. After
the population of interest is identified, an assessment of needs
is conducted to evaluate the type of outreach that would be most
beneficial to the community (Wood, 2003). The community may be dealing
with numerous concerns. The outreach project must determine which
issue has the greatest impact on quality of life and which is most
likely to be addressed effectively through outreach activities.
Advocacy. Whether it is teaching
caregivers how to cope with family members affected by Alzheimer's
or educating seniors on proper vision care, outreach projects are
designed to disseminate certain information or provide particular
services. Bannon (1973) states that advocacy serves as the distinguishing
factor between "benign forms of community help" and outreach. Thus,
outreach programs are created on the basis of promoting a message
that would result in transformation of lives (Edwards and Livingston,
1990).
Transformation of Social Behaviors/Attitudes.
The goal of many outreach projects is to transform social behaviors
and/or attitudes of the target population. Since some people with
disabilities from diverse cultures may have negative perceptions
of governmental agencies, access to programs, services or information
may be limited (Kramer, 1992; Burroughs, 1998). Therefore, appropriate
information regarding the purpose of the outreach can break down
negative views that can act as barriers to change.
Dissemination of Information.
Dissemination of the most current and accurate information can be
accomplished in several ways. Local organizational newsletters,
community calendars of events, print media, radio and TV shows,
and public service announcements are some of the commonly used venues
that organizations have found to be successful for spreading information
widely about an outreach project (Edwards and Livingston, 1990).
For the distribution of information to be effective, attention to
language and the cultural relevance of the materials is crucial
to the perceived value of the information. Even when the information
is current and accurate, it may be considered useless if it does
not adhere to the cultural and social context of the audience.
Strengthening Communities.
Strengthening communities is another principal theme of outreach.
In order to achieve stated goals, outreach projects emphasizing
this theme must develop and/or strengthen the communities that can
be responsible for maintaining desired behavioral transformations.
Communities can include organizations, agencies, coalitions, families,
social groups/clubs, and extended support networks such as the church.
These six themes are evident in the outreach models described in
the next section.
V. Outreach Models
Based on analyses of available published papers, NCD
determined that the information on outreach could be grouped into
six categories. The models in each category have common traits;
however, they are included as examples and should not be considered
an endorsement of any particular approach. Further, systematic evaluation
of these examples to determine effectiveness is beyond the scope
of this review. Among the models of outreach described in this paper
are: the community-based model, the grassroots model, the train-the-trainer
model, the peer-to-peer model, the partnership model, and the support
socialization model. More specifically, the community-based model
is one wherein focus is placed on building the capacity of current
community organizations. The grassroots model often uses indigenous,
native-speakers in venues not typically used by service organizations.
The train-the-trainer model trains trusted community members who
then train other members of the community so that the community
maintains the necessary knowledge after outreach workers have departed.
The peer-to-peer model emphasizes the mutual understanding of contemporaries.
The partnership model builds on the community partner's expertise
and trustworthiness, while the support socialization model couples
outreach with popular events to attract the community. What distinguishes
the models from each other is the degree to which they are designed
to transform systems, communities, and lives. Each is described
as follows:
Community-based Model. As
the most common method of outreach, community-based projects focus
on creating relationships with the existing networks of organizations
in the community prior to conducting outreach. Members of the community
are encouraged to be involved with all aspects of the project including
its design, implementation, and maintenance. The involvement of
community leaders and organizations provides a level of credibility
to the outreach project that can enable it to be trusted by the
population (Wood, 2003). Community members serve as the most valuable
resource to outreach workers since they are aware of current issues
and problems people in the community are facing. The community-based
projects are usually site-specific so that people's cultural backgrounds
can be well accessed and built into the project.
When outreach projects seek full community participation
in strategies for increasing knowledge or changing behaviors, capacity
building is enhanced and the community can continue the outreach
after the project is over. A community adopts the outreach model
if value is seen in the results. Incorporating existing community
groups into the outreach project also builds a network of organizations
focused on a particular topic or concern. (Fife, 2001). Examples
of community-based projects are church-based outreach programs to
African Americans, Project DIRECT, and the Tribal Connections Project.
A description of these projects is included under examples of outreach
programs, models, and strategies in Appendix A.
Grassroots Model. The grassroots
model overlaps the community-based model in that it also taps into
the existing network of organizations to promote outreach efforts.
However, the grassroots model has a strong emphasis on building
the innermost circles of the under-served population's support system.
This is in addition to the community level support found in the
community-based model. Informal gatherings at places such as laundromats,
beauty parlors, neighborhood meeting venues, and local small businesses
are used to spread information about the outreach project. Spreading
information through word of mouth is also common within this model
because many of the outreach workers are members of the community.
An intensive effort is required to mobilize the underserved
groups to spread information in the community. As one example, the
El Portal: Latino Alzheimer's Project was able to increase the number
of people served through extensive grassroots efforts in Latino
communities. The community members were reached through brochures,
hotlines, and extensive residential mailings (Aranda, 2003). Although
significant resources must be dedicated to the project for the grassroots
model to produce desired results, it can be a meaningful way to
get the whole community involved in promoting outreach efforts.
Train-the-Trainer Model.
The train-the-trainer model refers to a strategy that outreach workers
use to ensure that communities will be able to continue working
toward the goals of an outreach project once the project is over.
In this model, the outreach workers teach a specific skill or information
to trusted members of the community. In turn, those trusted members
then teach the desired skills to other people. Thus, even after
the outreach workers are gone, the community can maintain the knowledge
needed to address certain concerns or needs.
The Families Who Care project adapted the train-the-trainer
model to teach people living in rural areas, and African American
caregivers how to take care of elderly people who are living with
conditions associated with aging. Religious and community leaders
were trained during a two-day course on Alzheimer's and dementia,
and on the support needed for caregivers. The trained leaders returned
to their own communities and held training sessions for caregivers
(Coogle, 2002). This model can address cultural adaptation since
local leaders, who understand the community, are used as the trainers.
Peer-to-Peer Model. The peer-to-peer
model of outreach uses contemporaries of the under-served population
to conduct the outreach. The peer-to-peer model is based on people's
tendency to learn from their familiar colleagues rather than from
outside groups. Peers tend to share the same age-related concerns,
cultural barriers, and attitudes that foster a mutual understanding
and respect for each other.
Project INSIGHT adopted the peer-to-peer model in
outreach efforts to educate older adults on vision loss and the
benefits of vision rehabilitation. Senior volunteers were trained
to run educational programs that promoted healthy vision care, support
services, and information on rehabilitation. The volunteers were
able to educate and motivate their contemporaries because they were
experiencing similar vision issues and were accepted for their ability
to relate (Buonocore, 2002). Using the peer population as outreach
workers minimizes the need to devote resources to addressing cultural,
linguistic, and attitudinal barriers since the outreach workers
are already knowledgeable about the people who need to be contacted
about receiving the services.
Partnership Model. The partnership
model provides an opportunity for proponents of outreach programs
to work with trusted local, regional, public, and private organizations,
and agencies at all levels of government to address the needs of
the population of interest. For the partnership model, outreach
efforts are centered on developing and expanding the existing services
that the collaborating entities offer (Fleisher, 1998). By partnering
with various organizations and agencies, the outreach program is
able to reach underserved populations using the partner's expertise
and community trust.
For example, through the partnership model the nationally
coordinated Cancer Information Service Outreach program teamed with
organizations and government agencies to distribute information
on cancer, especially to people from diverse cultures and other
underserved populations. The CIS staff provided technical assistance
tailored to the cultural and regional needs of the partners. Coalition
building, media placement, and access to the most up-to-date cancer
information were some of the technical assistance services offered
to partners (Fleisher, 1998). Through these partnerships, the CIS
Outreach program was successful in reaching under-served people
in order to provide culturally and regionally appropriate cancer
information.
Support Socialization. Support
socialization refers to identifying crucial social activities that
are popular among the target population and then using these activities
as an intervention point for the outreach program. The activities
are endorsed and supported so that the outreach agenda can be coupled
with the activities. The activities serve as a "hook" that brings
people into the outreach project (Hartmann, 2003). The social force
of the activities appeals to the population's interests and passions
and thus creates the stage for social intervention.
An example of support socialization is the creation
of after-school and summer sports programs to keep young adults
away from drugs and crime. Program developers use sports as a social
intervention method to teach young people the value of teamwork,
perseverance, and responsibility. Although the level of impact remains
unclear regarding whether sports alone can alter the mindset of
at-risk youths, the data suggested that sports coupled with other
non-sports-based programs could provide the comprehensive intervention
necessary to improve the future of this population (Hartmann, 2003).
Arguably, other appealing social activities can be
coupled with outreach activities to increase the number of people
reached and enhance receptivity of the message being conveyed. According
to the World Wrestling Entertainment, Vince McMahon has teamed up
with Russell Simmons of the Hip Hop Summit Action Network to promote
voter registration among young people. Using a support socialization
model, they plan to sponsor entertainment events coupled with on-site
voter registration using the catchy phrase, "Two million more by
2004!" (World Wrestling Entertainment, 2003).
Examples of Legislatively Mandated
Federal Outreach. Outreach by a federal agency to people
with disabilities from diverse cultures was legislatively mandated
in the Individuals with Disabilities Education Act (IDEA) and the
Vocational Rehabilitation Act of 1973, as amended, in the early
1990s. Under the IDEA authority, the U.S. Department of Education
was instructed by Congress to use agency funds to assist minority
institutions in building their capacity to compete for special education
personnel preparation grants. The Department currently funds the
Monarch Center that uses the partnership outreach model. It provides
technical assistance and dissemination to promote access to and
participation by predominantly African American, Hispanic/Latino,
and other institutions the Department of Education identifies as
"minority" institutions in discretionary programs authorized by
the Individuals with Disabilities Education Act (IDEA). According
to their project description: "technical assistance services are
provided by a nationwide cadre of content experts and trainers through
workshops, seminars, conferences, individual mentoring, and follow-up
coaching. Additionally, partnerships and cooperative activities
are established with a range of [Office of Special Education Programs,
Technical Assistance & Development] providers, research and development
projects, national centers, and organizations." (Office of Special
Education Programs, 2003, p. 1)
Outreach services to entities serving people from
diverse cultures to expand research capacity were also mandated
by IDEA legislation. Two projects of note are located at the University
of South Florida. The first, Linking Academic Scholars to Educational
Resources (LASER), will ensure the development and implementation
of a research agenda on urban special education, with the ultimate
goal of improving schooling for urban children and youth with, or
suspected of having disabilities. The project description summarizes
their mission as follows: "to: 1) develop cadres of faculty and
graduate students in minority institutions who will conduct and
sustain urban special education research/scholarship; 2) develop
a national strength-based model that documents strategies for enhancing
individual and institutional research capacities; and 3) define
and coordinate a national agenda that narrows the gap between research
and urban school practice." (Ibid, p. 1)
The second project, Engaging Cross-Cultural Leadership
in Preparation for Special Education (Project ECLIPSE), "is a four-year
project designed to recruit and prepare a cross-cultural cohort
of ethnic minority and majority scholars for careers as urban special
education researchers and teacher-educators. The project will provide
competitive research fellowships, opportunities for collaborative
research and mentoring seminars, and tiered formal and informal
mentorship experiences." (Ibid, p. 1)
The University of Texas - El Paso (UTEP) in western
Texas will implement Project AIMED (American Indian Masters degree)
to train highly qualified educators to work with American Indian
students with disabilities. "The purpose of this project is to recruit
and train 40 teachers to provide culturally and linguistically appropriate
educational programs to students with disabilities who are American
Indian, and to graduate qualified educators who will implement a
high-quality bilingual special education program on four different
American Indian reservations: the Tigua of western Texas, the Tortugas
of southern New Mexico, the Apaches of eastern Arizona, and the
Apaches of eastern New Mexico." (Ibid, p. 1) These are just a few
of the legislatively mandated, federal outreach programs that can
provide viable, sustainable changes in under-served communities
across the country.
It is NCD's contention that federal agencies must
reach out to customers with disabilities from diverse cultures to
ensure equality in opportunities for program and service awareness
as well as participation. To assure that programs and services are
sensitive to cultural differences, federal agencies should undertake
a self-assessment. Programs and services need to be systematically
evaluated to determine their efficacy in serving people most in
need. Broadly, such self-assessments should look at how an agency
is prepared to adjust systems and operations within the context
of the country's changing demographics. Some agencies have done
just that and are in the vanguard of those interested in culturally
sensitive and responsive service provision (e.g., Office of Minority
Health's Culturally and Linguistically Appropriate Services, CLAS).
Some other agencies are just beginning this assessment and can learn
from the experiences of other agencies.
VI. Summary
of Findings of the CDI Resource Mapping Project
As a part of its Cultural Diversity Initiative launched
in fiscal year 2003, the National Council on Disability (NCD) requested
the cooperation of nine federal agencies in a resource-mapping project.
The resource-mapping project was designed to engage each agency
in a self-assessment of internal and external outreach efforts for
broad inclusion of people with disabilities from diverse cultures
in federal agency-sponsored programs, services, products, and activities.
NCD asked each agency for assistance with documenting outreach efforts
already underway within the federal government.
The self-assessment addressed five areas through responses
to an NCD inquiry and included: (1) funding, (2) disability and
diversity, (3) evaluation plans, (4) information accessibility,
and (5) ongoing agency research. At the time this paper was developed,
NCD had received responses from eight of the nine selected agencies.
Based on review and analysis of the data, NCD made
several observations that might impact (a) the expansion of these
or similar efforts to include additional federal agencies, (b) the
focus of a planned follow-up dialogue with the federal agencies,
as well as (c) the design of future data collection work in this
area. First, all of the federal agency programs and activities addressed
disability and/or diversity separately. Second, with a single exception,
the federal agency responses to NCD's inquiry represented only one
of several offices, divisions or branches within each agency. For
example, the U.S. Department of Health and Human Services (DHHS)
Office of Civil Rights (OCR) responded only for OCR; however, absent
were responses from other DHHS offices with established work and
track records in the area of cultural sensitivity and outreach programs
such as in the mental health area. Third, not all definitions of
outreach were consistent with NCD's operational definition that
was included as a part of the information provided to each agency.
Finally, agency information was not always responsive to the areas
of inquiry. The combined effect of these observations posed a challenge
for a systematic analysis of the information collected. While the
data summaries may not reflect the full scope of each agency's outreach
efforts, the information reported in this paper serves as a starting
point - paving the way for future inquiries and follow-up activities
at the discretion of the participating agencies.
For the purposes of the resource mapping inquiry,
outreach was defined as "a systematic attempt to provide services
beyond conventional limits, to particular segments of a community."
The "particular segments of a community" referred to people with
disabilities from racially and ethnically diverse cultures in the
United States and "services" encompassed anything the named federal
agencies do in fulfilling, advancing, and/or furthering their mission;
i.e., the full range of services, programs and activities that the
named federal agencies undertake, including informing their consumers
of their rights under the ADA as they pertain to that agency.
Prior to reviewing published articles from the literature
search or reviewing the results of the resource mapping inquiry,
NCD was, to a great extent, informed of the numerous and long-standing
outreach efforts initiated within the federal government, particularly
in a number of offices within the Department of Health and Human
Services (including the Office of the Surgeon General, the Office
of Minority Health and the Office of Indian Health), and within
the Department of Education (the Office of Special Education and
Rehabilitative Services). The outreach by these offices to various
people with disabilities from diverse cultures has often taken the
form of a high-priority campaign (e.g., to eliminate health disparities
by a time certain). Various programs under HHS exemplify each of
the outreach models described above and many HHS reports cite the
unique challenges of reaching people from diverse racial and ethnic
backgrounds (US Surgeon General, 1999). Outreach strategies are
recommended and used frequently, yet are rarely systematically analyzed
or compared.
For example, in 1998 the Office of Minority Health
(OMH) initiated an assessment of the health infrastructure for people
from diverse cultures in selected states and territories and examined
the capacity of these jurisdictions to address health disparities
by race and ethnicity. The study examined data collection and analysis,
cultural competence, access to health care and health professions
development. Using information from site visits and interviews,
and information gathered from key informants, the study revealed
"outreach to the minority communities was the most frequently used
approach to engage minorities in prevention or health care. Connected
to outreach were efforts to provide health education through the
development of culturally and linguistically appropriate health
education and promotion materials and through social marketing campaigns"
(OMH, 2003, p. 6) Again, a systematic evaluation of these efforts
was not a part of this study.
The General Accounting Office (GAO) was recently asked
by Congress to identify promising approaches to address racial and
ethnic health disparities, and noted that outreach is among the
many interventions used to address these disparities. "HHS has focused
on racial and ethnic disparities in health access and outcomes in
six areas: cancer screening and management, cardiovascular disease,
diabetes, HIV infection/AIDS, immunizations, and infant mortality.
HHS offices and agencies, researchers at philanthropic foundations,
and private organizations such as employers and health plans have
efforts underway to try to address racial and ethnic disparities
in health care, using interventions such as disease management programs,
disease prevention programs, health literacy and language service
projects, and education and outreach programs." (GAO, 2003, p. 1)
The following is a brief summary of the initial resource
mapping inquiry findings. This data provide a preliminary scan,
albeit spotty, of the state of disability/diversity outreach at
the national level by the federal government. This data can be used
to encourage future dialogue and federal inter-agency collaboration
wherein agencies may share their promising practices with each other
and by so doing, enhance their programs and ultimately increase
involvement of people with disabilities from diverse cultures in
agency programs.
Funding. In the eight agencies
NCD reviewed, five earmarked funds for disability outreach and two
agencies earmarked funds for diversity outreach. The Department
of Transportation (DOT) submitted ten separate responses for its
ten divisions; therefore, DOT warranted an independent assessment.
Eight of the ten DOT divisions earmarked funds for disability outreach
and six of the ten divisions also earmarked funds for diversity
outreach. DOT has a one-stop shop Disability Resource Center (DRC)
that provides services, technical assistance and training to ensure
that applicants and employees with disabilities in DOT can participate
fully in all aspects of DOT work, programs, and services. A number
of DOT divisions specifically noted in their responses that they
contribute funds annually to support DOT-DRC. It is not clear if
all DOT divisions are required to do so.
Outreach funding levels vary widely across the eight
agencies. The levels of outreach funds ranged from $0 to $16.5 million.
Agencies based their calculation of outreach funds on various factors
and such factors varied widely across the eight agencies. For instance,
a number of agencies provided a breakdown of funds devoted to certain
outreach programs and activities while other agencies accounted
for salaries of Full Time Equivalents (FTE) focusing on disability
and/or diversity issues within the agency. Additionally, disability
and diversity related grant awards by agency was the basis of the
response provided by one agency. It is also worth noting that the
disability outreach funds listed by a number of DOT divisions were
specifically noted as the funds that the particular division contributed
annually to support DOT-DRC.
A recurring explanation of disability and/or diversity
outreach being integrated into an agency's day-to-day work and that
such funds are incorporated in the overall agency's outreach budget
was echoed by agencies with no funds earmarked for disability and/or
diversity outreach.
Disability and Diversity Outreach.
The agencies used various strategies to reach out to people with
disabilities and people from diverse cultures. For example, the
Department of Housing and Urban Development (HUD) spearheads a diversity
outreach program known as Community Development Work Study Program
(CDWSP). The CDWSP program is designed to ensure that graduate students
from economically disadvantaged and diverse cultural backgrounds
pursue careers in community and economic development. The Department
of Labor (DOL) offers millions of dollars in federal grants supporting
strategic planning and implementation of activities designed to
improve the employment and career advancement of people with disabilities.
A number of the DOL grants specifically target the development of
model demonstration programs that will enhance the capacity of DOL
to serve youth with disabilities. Likewise, the Equal Employment
Opportunity Commission (EEOC) conducts extensive technical assistance
and training on the Americans with Disabilities Act (ADA) and other
disability laws and issues to a wide variety of employer, advocacy,
legal and general audiences. The Department of Education hosts mentees
from the DOL sponsored National Disability Mentoring Day program
as an outreach effort to individuals with disabilities. The program
provides an opportunity for individuals with disabilities to spend
a day learning about the Department of Education and the kind of
employment opportunities available at the agency.
DRC is a division within DOT that serves as the agency's
internal one-stop technical assistance resource to all of DOT's
programs. DOT-DRC conducts extensive disability outreach such as
training and educational workshops to DOT's staff/employee and consumer/customers.
In addition to the DOT-DCR outreach efforts on behalf of DOT as
a whole, the other nine DOT divisions provided comprehensive summaries
of their respective efforts in disability and diversity outreach.
An overview of the outreach efforts and activities of each of these
DOT offices is beyond the scope of this summary; however, commonalities
included targeted recruitment programs designed to reach people
with disabilities and people from diverse backgrounds, disability
and diversity awareness education for transportation personnel,
dissemination of awareness building and technical assistance information
ranging from safety, security, nondiscrimination and access that
target air travelers with disabilities from diverse cultures, including
those with limited English proficiency, through informational websites,
fact sheets, telephone hotlines, employee trainings and the sponsoring
of employee attendance at conferences.
Evaluation Plan. The agencies
use various informal evaluation plans to measure the success of
their respective outreach efforts. EEOC was the only agency that
illustrated a formal evaluation plan that measures the success of
its strategic objectives. The most common evaluation approach among
the other agencies was the assessment of whether the recruitment
of targeted individuals results in an increase in the applications
as well as the hiring of persons with disabilities and people from
diverse cultures. DOT Federal Transit Administration (FTA) measures
effectiveness based on reduction in the number of complaints received
and the increase in the number of requests for technical assistance.
The Department of Justice (DOJ) relies on its Equal Employment Opportunity
(EEO) report as a method of measuring the success of its outreach
efforts.
Accessibility of Agency Information.
All eight agencies that responded to NCD's inquiry indicated to
a certain degree that they accommodate various types of disabilities
and language modes in the ADA and agency information they disseminate.
Specifically, this entails making print reports, brochures, CD-Roms,
videotapes and the agency's Web site accessible through various
means, such as the TTY, captioning for audio output on the Internet,
alternative formats such as Braille, and languages other than English.
Ongoing Research. Only two
of the ten DOT offices and three of the seven other agencies responded
affirmatively to NCD's inquiry regarding studies in place or in
FY04 budget requests to examine the nature of the participation
of people with disabilities and people from diverse cultural groups
in an agency's programs, services and activities. EEOC pointed out
that while it conducts no formal disability or diversity related
studies, the agency documents data regarding the disabilities most
frequently cited in complaints. For ongoing research relating to
diversity, SSA noted that the agency is conducting a study on how
to improve its hiring, promotion and retention of employees with
disabilities. The Department of Education indicated that most of
the agency's studies address diversity in some way and other studies
target disability. HUD cited various ongoing studies by that address
disability and/or diversity. One such study examines the trend towards
greater integration into the community by providing mainstream housing
opportunities for persons with disabilities. Another HUD study,
the Housing Discrimination Study, involves an ambitious effort to
measure the extent of housing discrimination in the United States
based on race or ethnicity. DOT Federal Transit Administration listed
four ongoing assessment studies: 1) Fare Increase (studies that
examine if a fare increase is discriminatory and whether equity
issues were taken into consideration when planning for change);
2) Multilingual Information and Signage; 3) Equitable Allocation
of Resources; and 4) Service Changes. These studies assess specific
areas that appear to be recurrent concerns with transit customers
who file Title VI complaints or lawsuits. Finally, DOT Federal Highway
Administration indicated that it is engaged in a Multi-Year Affirmative
Employment Task Force to assess the status of the Agency's current
employment posture, identify barriers and under-representation,
and set goals consistent with the Agency's responsibilities under
various Presidential initiatives to employ Hispanic/Latino Americans,
Asian Americans, and Americans with disabilities.
Observations. The key elements
of each agency's response to the NCD Resource Mapping Inquiry varied
across the agencies. Although NCD provided a working definition
of outreach for the purpose of the NCD Cultural Diversity Initiative
(CDI) project, instances of varying interpretations of outreach
were evidenced in some aspects of the agencies' responses. There
were also several instances where information provided was not responsive
to the particular inquiry. Readily visible from the eight responding
agencies' outreach information was the absence of any form of outreach
that simultaneously targeted people with disabilities from diverse
racial and ethnic backgrounds. The outreach programs and activities
accounted for were all either within the disability category or
the diversity category. It is also important to mention that the
inquiry responses, with the exception of DOT, represent only one
of several offices, divisions, or departments within each agency.
All of this together poses a challenge for NCD to systematically
analyze the information collected. Therefore, findings in this summary
do not necessarily reflect the full scope of each agency's outreach
activities. Next steps in the NCD CDI project include making the
data from each agency more complete through inter-agency collaboration
and further dialogue. One of the goals of the ongoing dialogue among
agencies on outreach to people with disabilities from diverse backgrounds
will include developing a reliable and valid set of baseline data
for each agency on programs, policies, products, and procedures
that agencies can share.
VII.
Challenges to Outreach This section discusses
several factors identified in the literature as challenges and/or
barriers to outreach efforts. These factors are similar to NCD's
findings and recommendations on the overall unmet needs of people
with disabilities from diverse cultures. Among those factors are
the lack of culturally appropriate outreach; failure to engage local
leaders; the lack of needs assessments; language and communication
barriers; attitudinal barriers and the shortage of individuals from
diverse cultures in disability services professions.
Lack of Culturally Appropriate Outreach.
Based on the multicultural make-up of the United States population,
outreach programs must make a careful evaluation of a particular
group's culture before the start of any endeavor. Differences in
culture reflect more than a person's ethnic and racial background.
Other relevant factors include place of residence and the demographics
of people living in the area--age, health status, occupation, religion,
sex, societal status, and so forth. These group characteristics
must be addressed so that the project design is sensitive to cultural
factors. Otherwise, untailored projects may result in a community
backlash towards the program or organization. For example, with
the high prevalence of certain diseases, such as diabetes, among
different ethnic groups, certain pharmaceutical companies set out
to improve the health status of people from diverse cultures by
advertising medications. In their publicity campaign, the pharmaceutical
companies used multilingual transit ads to gain presence in communities.
Although these ads do circulate in major ethnically diverse areas,
their success is very limited due to the community's distrust of
the healthcare system. Many people with disabilities from diverse
cultures feel that the pharmaceutical companies' interests lie in
company pocketbooks and not in alleviating community health problems.
Therefore, without a credible, long term, grassroots-implemented
campaign, many outreach projects will not yield the desired results
(Goetzl, 2000).
Limited Funding. When only
limited funding is available, project leaders are unable to gain
meaningful entry into the community, translate materials into different
languages, hire culturally competent coordinators, or distribute
information in the most useful manner. For instance, to decrease
the undesired teenage pregnancy rate among members of an identified
group, written pamphlets and brochures have been found to be unsuccessful
in changing behaviors. However, intergenerational programs with
limited funding that focus on oral traditions were much more helpful
in decreasing the incidence rate of pregnancy for this population
(Fife, 2001).
Lack of Needs Assessment.
To ensure an appropriate foundation is formed prior to starting
a project, a comprehensive needs assessment must be conducted by
the outreach program proponents. The literature identified several
elements that outreach organizers have found to be essential to
this process. The project Wood and his colleagues conducted (Wood
et al, 2003) was geared toward facilitating access to the Internet
and thus to health information available on the Web, to American
Indians living on tribal lands. However, the fourteen elements that
Wood, et al identified as key elements of a tribal community needs
assessment may be beneficial to other project leaders entering a
community. The elements are as follows:
- Stop, look, and listen; enter with respect.
- Develop a mental image or picture of the community;
onsite visits are essential.
- Do your homework; review in advance what is known
about the demographics, health status and issues, local leadership,
technical infrastructure, etc.
- Your goal is to understand the local community-
its history, governance, members, interests, needs, priorities,
and spirit.
- Identify, search out and connect with local organizations,
leaders, and advocates-both health and information technology
(IT)-related.
- Understand the health information needs and users
in the community and the facilitators and barriers to use.
- Benchmark the current technical infrastructure
(computers, local/wide area networks, Internet connections, IT
staff support) in the community and specifically the health sector
and related organizations (e.g., schools, libraries).
- Get feedback through discussions with leaders,
key contacts, elders, and users.
- Look for partnership opportunities; be creative,
work across boundaries.
- Create a partnership plan- with emphasis on sustainability
and capacity building.
- Prepare technical, training, and outreach plans
in collaboration with community leaders, and the health and IT
staff. Remember it is their community, not yours.
- Build on already existing community initiatives
and activities (e.g. health fairs, disease-specific patient groups,
wellness programs) to the extent possible.
- Be prepared to be adaptive, iterative, supportive,
and open-minded, yet be honest and realistic; balance vision with
practicality.
- Build flexibility into the project schedule; the
pacing and timing should give priority to the community's needs,
capabilities, and readiness.
Overall, the fourteen elements emphasize the importance
of respecting and understanding the community's "needs, capabilities,
and readiness." Furthermore, it was deemed important to focus on
working with community members to create a mutual understanding
as the basis for a partnership created to produce a mutually beneficial
project.
Failure to Engage Local Leaders.
Outreach projects that utilize the community-based model
can break down barriers to reaching the targeted population by working
with local prominent and/or trusted leaders. Since many leaders
have an understanding of the population, they can be valuable resources
during the planning and implementation of the project. In addition
to their expertise, the community leaders and the groups they represent
can provide a bridge to gaining the trust and acceptance of the
people who will benefit from outreach. In Burroughs' research on
maximizing African Americans' participation in diabetes research,
he cites the benefits of using leaders and local social groups for
a Community Advisory Board (CAB) that acted as the "guardians" of
the project. The CAB was created to ensure the community's interests
were served first and that the people conducting the outreach were
mindful of what the community wanted from the outreach efforts (Burroughs,
1998).
Failure to Use Peers. Another
model of outreach that has the goal of cultural accommodation built
into its approach is the peer-to-peer model. In this method, peers
of the targeted group are hired to conduct the outreach so that
the project employees are people ready to work in a manner that
acknowledges and respects the culture. The success of the "Buddy
Project" relied on caseworkers who were mental health survivors
and who were once homeless reaching out to homeless people with
psychiatric disabilities. "Outside" caseworkers that tried to reach
this homeless population to encourage treatment met unreceptive
people. The peer caseworkers were able to connect on the basis of
their own experiences with similar mental and social states (Fisk,
2002). Although the sample in the outreach project was small, it
nevertheless illustrates the promise of using peers of a target
population to administer an outreach effort.
Language and Communication Barriers.
Once outreach organizers have a strong grasp of the environment,
they can then disseminate information and communicate their objectives
to the people who will be involved in the project. When organizers
enter a community without listening to what the people want, projects
will not reflect the interest of the people (Johnson, 1996). Thus,
the outreach organizers must make communication a priority, since
the meaningful outcome of the project can be determined by the degree
of open interaction and understanding among the people conducting
the outreach and the people intended as beneficiaries. Projects
for serving non-English speakers, people with low-level reading/writing
skills, or who have disabilities, must give additional attention
to removing language and communication barriers. For example, it
would be counterproductive to reach out to these groups through
written materials that are in English only and/or that have complex
vocabulary and highly technical terms.
With the rapidly changing demographics of the United
States, multilingual information has become even more essential
and critical than ever. Non-English and non-native English speakers
face barriers to outreach projects when the informational materials
and communication efforts have not been properly translated into
an appropriate language. Translation may be a difficult task for
projects that attempt to reach ethnic groups that have numerous
subgroups with different languages and dialects. For instance, one
translation would not suffice for the American Indian population.
As an example, in Los Angeles, California, this population includes
over eighty tribes and languages (Kramer, 1992). Another example
nationwide is the Chinese population that also speaks numerous dialects
and languages such as Mandarin, Cantonese, Gan, Min, Xiang, and
Hakka.
Knowing how to communicate with a particular population
and through appropriate language is imperative if outreach providers
are to communicate their objectives and information without seriously
compromising a project. In order to customize a project to the best
interests of the population, resources must be adequate and used
to create a communication approach that would enable meaningful
dialogue.
Attitudinal Barriers. Misperceptions
held by outreach providers and/or by the target population can significantly
hinder the progress of an outreach project. With negative perceptions
of the "system" prevalent among people from diverse cultures, a
sense of distrust is common when outsiders enter communities to
provide information or to change behaviors without establishing
trust and credibility. Along with negative, mistrustful views toward
the system, some attitudes about disability and people with disabilities
are barriers that breed prejudices or stereotypes and must be deconstructed.
Historical events have also impacted levels of trust
and respect. For example, some American Indians living in urban
areas are reluctant to approach government agencies for any kind
of aid because of the treatment they receive from workers. According
to Kramer (1992) and NCD (2003), most government workers are unaware
of American Indian culture and values, so they have been seen as
"disrespectful at best or outright hostile at worst" (Kramer, 1992,
p. 49). Similarly, Hanley (2003) states that, for African Americans,
under-utilization of mental health services can be attributed, in
part, to the racist manner in which services are provided by staff.
Additionally, African Americans' distrust of the U.S. government
and its agencies may be attributed to experiences such as slavery
and its impact on family and economic opportunity, as well as inhumane
treatment of group members in studies such as the infamous Tuskegee
Project. Hence, for outreach projects to survive and prosper among
African Americans, the outreach administrators must understand what
people have encountered and the attitudes towards "outsiders" who
seek to implement programs (Pickett-Schenk, 2002).
Besides addressing attitudes towards outsiders, outreach
workers themselves must become knowledgeable about diverse views
on disability. Cultural perceptions of disabilities such as diabetes
must be acknowledged before the outreach project creates its plan
of action. For instance, families may conceal diabetes if it carries
a social stigma (Burroughs, 1998). In some diverse cultures, having
a disability designates a person as an outcast: someone who is incapable
of being a functioning member of society. The disability may be
viewed as the result of bad karma or a form of chastisement resulting
from the family's wrongful actions. For example, Tsao (1999) cites
the stigma of being a "triple minority", a Chinese woman with a
disability, in a society that does not value differences.
Community and partnership models of outreach can alleviate
the pressures of attitudinal barriers when outreach proponents work
with community members to strengthen service possibilities. When
outreach projects work within the existing community to build a
network of services, the outreach projects are able to contribute
to a lasting change in people's lives, including integration into
the broader community.
Shortage of Individuals from Diverse
Cultures in Disability Services Professions. The lack of
diverse service professionals can compromise the quality of service
delivery to people from diverse cultures. Issues arise when culturally
insensitive service providers are unaware of offensive actions.
However, people with disabilities from diverse cultural groups often
have demonstrated different levels of trust in service professionals
of similar backgrounds.
For instance, one community may perceive a physician
as a "figure of legitimized authority and power," (Aranda, 2003,
p. 264) while another community may be more trusting of nurses than
doctors. For the El Portal: Latino Alzheimer's project, doctors
were encouraged to provide information and education on Alzheimer's
disease to Latino families. This inter-organizational, community-based
project utilized the most influential person in the Latino community
to administer the outreach (Aranda, 2003) rather than assume doctors
were always the professionals to provide this type of outreach.
In another example, the Community Partnership Primary
Care project (CPPC) required physicians and nurse practitioners
to acquaint themselves with the community and to develop a dialogue
with the members of the community (Courtney, 2003). Even though
the project did not require the health professionals to come from
diverse backgrounds, it did emphasize the need to learn about the
community. The Rural Elder Outreach program used nurses as caseworkers
instead of social workers or psychiatrists to conduct outreach visits
that linked families caring for elderly citizens to appropriate
support services (Abraham, 1993).
Lack of staff from diverse cultures may not only hinder
services, but it may also close doors for people who need service
benefits. In rehabilitation counseling, the absence of a bilingual
counselor could result in a vague or completely inappropriate assessment
of an individual's capabilities, if the counselor is unable to communicate
with the consumer. Misunderstanding of the consumer's cultural background
could also prevent the counselor from being sensitive to family
support issues and cultural perceptions of disabilities. Translators
may be hired for assessment purposes, but the third party may inhibit
the consumers from expressing real concerns out of fear or embarrassment
(O'Brien, 1996).
Lack of Information about Resources.
Obtaining information about necessary resources has been one of
the barriers that prevent people from accessing services. Since
there are already few services available specifically for people
with disabilities from diverse cultures, information about existing
services in the mainstream needs to be made widely available and
culturally sensitive. For example, American Indians living in cities
tend to be overlooked by service agencies because there is no centralized
community mechanism to connect members of the population to services
(Kramer, 1992).
It is also difficult for people living in rural communities
to spread information about resources because of secluded and difficult
to reach areas. To reach out to the rural population, outreach programs
must focus on building a community network support system that would
act as a resource center to disseminate information and provide
support (Abraham, 1993).
Lack of Coordinated Services.
This can further exacerbate the access gap because people receive
fragmented instead of comprehensive solutions and services. In addition,
resources may be duplicated or incomplete when there is no service
coordination and this leads to frustration and lack of access to,
and/or under utilization of, existing services. For example, lawyers
providing "pro bono" work have difficulty contacting people who
need their services. Without a proper strategy to match people with
lawyers, people who are economically disadvantaged may be left with
huge attorneys' fees or succumb to the legal charges against them.
Even when lawyers want to volunteer their time to provide free services
to their communities, their good intentions are often wasted by
the lack of usage (Fiorella, 2003).
As another example of coordination needs, the El Portal:
Latino Alzheimer's project cited fragmented services as a barrier
to people receiving comprehensive care for Alzheimer's. It was reported
that patients were often transferred to different providers and
services that required different applications and methods of payment.
As a result, patients often forgo care or settle on fragmented care
instead of enduring the frustrations of dealing with these systems
(Aranda, 2003).
Limited Use of Client Focused Services.
Assertive outreach has been reported to be quite successful in ensuring
complete care for people with mental health disabilities. NCD noted
in an earlier report, From Privileges to Rights, that this also
applies to people who are mental health survivors (NCD, 2000). Under
the client focused method, caseworkers focus on the client's overall
quality of life and not just health issues. The client-focused approach
may be costly since time limits are not set with clients. However,
the advantage is in improved outcomes where coordination of care
for mental health patients is important (Winchester, 2002).
Coordination of services through a community center
has been reported as especially useful for people living in rural
areas. Fife and colleagues suggest: 1) the most successful and long-lived
programs are those that include community participation in their
conception, design, and implementation, 2) those programs that are
most convenient for participants to access will be the best received,
and 3) feedback from participants and modification of these programs
in accordance with this feedback |