Outreach and People with Disabilities from Diverse Cultures: A Review of the Literature

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A National Council on Disability

 Cultural Diversity Initiative

November 20, 2003

 

National Council on Disability

 1331 F Street, NW, Suite 850

Washington, DC 20004

202-272-2004 Voice

202-272-2074 TTY

202-272-2022 Fax

 

 

Lex Frieden

 Chairperson

Contents

Executive Summary ..........................................................................4

I. Introduction.................................................................................7

Background

Method and Scope

II. Prior NCD Diversity Reports and Findings............................................9

III. Definitions of Outreach..................................................................12

IV. Principal Themes of Outreach..........................................................13

Value Placed on Target Population

Assessment of Needs

Advocacy

Transformation of social behaviors/attitudes

Dissemination of information

Strengthening communities

V. Outreach Models. .......................................................................14

Community-based

Grassroots

Train-the-Trainer

Peer-to-Peer

Partnership

Support Socialization

VI. Summary of Findings of the CDI Resource Mapping Project.....................18

VII. Challenges to Outreach...............................................................22

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...................................................31

IX. Conclusions.............................................................................33

X. References.................................................................................34

XI. Appendices...............................................................................40

A. Examples of Outreach Programs, Models, and Strategies

B. Mission of the National Council on Disability

 

Acknowledgments

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.

 

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:

 

1. 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.

 

2. 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.

3. 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 departedthe 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.

 

4.   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.

 

5. 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.

 

6. 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.

 

7. 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.

 

1. 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.

2. 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.

 

3. 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.

 

4. 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.