Strategies for Reaching out to Minority Individuals with Disabilities

This information is available in PDF format upon request.

Fabricio E. Balcazar, Ph.D., Principal Investigator

Developing the Capacity of Minority Communities to Promote the Implementation of the Americans with Disabilities Act (ADA) University of Illinois at Chicago

This was funded by the National Institute of Disability Rehabilitation Research as part of the Research and Training Center on Full Participation, a division of The Research and Training Center on Independent Living (RTC/IL), The University of Kansas, Room 4089 Dole Center, 1000 Sunnyside Avenue, Lawrence, KS 66045-7555, Voice: (785) 864-4095, TTY: (785) 864-0706, Fax: (785) 864-5063, email. This originally appeared in the 2001 Research Exchange 6(2).

The National Council on Disability in 1993 prepared a report to the President and the Congress on the challenge of meeting the needs of minorities with disabilities (NCD, 1993). This report was prepared on the basis of a national conference with multiple ethnic and disability groups represented. Some of the key findings of the report included the following issues: (1) The problems faced by many minority persons with disabilities are complex and require the coordinated attention of many programs and professionals from multiple disciplines.   (2) There is limited research on issues related to minority persons with disabilities, and consequently, there are insufficient data on these populations to offer substantial guidance for policy or service development. (3) Service delivery staff members are not sufficiently trained to work with multicultural populations. (4) There have been insufficient outreach efforts to ensure participation of minority persons with disabilities in many programs. (5) Education should become more available and focus on the abilities of the individuals rather than their limitations. (6) Specific efforts should be made to assist minority individuals with disabilities in the process of advocating and learning to assert their rights through legislation like the ADA or IDEA. (7) There is a need to develop grassroots networks and funded resources to help minority individuals with disabilities become active participants and leaders in their respective communities.

Introduction

A conclusion that could be derived from a brief review of this list is that reaching out to minority individuals with disabilities is only one aspect of a more broad and complex problem. There is no doubt that the challenges that minority individuals with disabilities face are difficult and complex. Many of these problems are often associated with conditions resulting from poverty. In fact, as Fujiura and Yamaki (1999) found in their review of 1983 through 1996 demographic trends, poverty itself becomes a predictor of disability during childhood.

Both researchers and service providers have long struggled with the process of reaching out to minority individuals with disabilities. Our Advocacy and Empowerment for Minorities with Disabilities Program at the University of Illinois at Chicago (UIC) has been attempting to work in collaboration with minority individuals with disabilities–particularly Latinos and African Americans–over the last ten years. We certainly cannot make any claim of having found a magic solution to the outreach dilemma. However, there are a number of approaches derived in part from our field experience and from the principles of community psychology that have been very helpful to us. For those unfamiliar with the field of community psychology, a central goal is to "optimize the well being of communities and individuals with innovative and alternative interventions, designed in collaboration with affected community members and with other related disciplines" (Duffy & Wong, 1996, p. 11). Self-help, community participation and involvement, capacity building, empowerment and community control are central themes of a community psychology approach to research and action.

Our work at UIC revolves around the general theme of consumer empowerment (Fawcett, White, Balcazar et al., 1994), applied at the individual (Balcazar, Keys, & Garate-Serafini, 1995), group (Balcazar, Mathews, Francisco, & Fawcett, 1994) and community levels (Balcazar, Keys, & Suarez-Balcazar, 2001). We conceptualize empowerment as the process by which individuals or groups increase their degree of control over relevant events, desired outcomes or resources in their environment. This process involves both critical reflection and action. We attempt to promote empowerment through a participatory action research methodology (PAR). This methodology emphasizes the active participation of community members–in this case minority individuals with disabilities–in all phases of the research and intervention process in order for them to find solutions to their problems and promote their own social transformation (Selener, 1997).

The following is a list of general principles and strategies that we have used to improve our outreach activities to minorities with disabilities. The list is intended as a general guideline to the outreach process.

Before You Try to Reach out to Minority Populations, Make Sure You Can Provide the Services they Need.

This point should be obvious to service providers, although some agencies with limited resources and staff often find that they are unable to deal with the multiple needs of minorities with disabilities. Service providers and/or researchers should be capable of effectively addressing the needs of the individuals they are trying to serve in order to avoid reinforcing their alienation.

Agencies should make efforts to identify the needs of the target population in order to tailor their services in a most effective way. We utilize a participatory needs assessment methodology called the "Disabled Citizens Concerns Method," developed by researchers at the University of Kansas (Fawcett, Suarez-Balcazar, Wang-Ramos, Seekins, Bradford, & Mathews, 1988; Suarez-Balcazar, Bradford & Fawcett, 1988). This approach has proven useful in helping consumers identify their unmet needs and mobilize them for action (Balcazar, Keys, & Suarez-Balcazar, 2001). Unfortunately, most marginalized populations, particularly African American groups, are overused as research subjects.

They are more willing to participate in intervention research that has the potential to bringing some direct benefit to the community. That is why we favor a participatory action research approach. We also make sure to compensate participants for their time spent in data collection activities

Utilize a Diverse Research Team or Diverse Staff to Deliver Services to the Target Population.

Several researchers (e.g., Alston & Bell, 1996) have studied the issue of mistrust, particularly among African Americans, of traditional service delivery agencies [including state vocational rehabilitation (VR) agencies.] This mistrust is incremented if the individuals have to deal with providers who do not seem to share their characteristics or values. That is why it is so important to recruit and support minority staff. They can make consumers feel more welcomed and hopeful that their needs will be met. A frequent limitation in serving the Latino community is the lack of bilingual staff, or having staff that is not familiar with the culture of the target population. Staff that is culturally sensitive and aware of the culture’s social norms can communicate more effectively with minority individuals

Build Personal Relationships with Members of the Target Community.

We encourage team members to get to know community members and establish personal relationships with them in order to develop a better understanding of their culture and values. It is very important to develop personal relationships with the gatekeepers or leaders of the community to seek their input. They can have a great deal of influence and their opinions are highly respected by other members of the community. They can be of great help, by introducing you to other community members, facilitating entry or outreach, describing the value of your work to others, and supporting you when you need assistance.

Become a Part of the Local Network.

This is a common practice for service providers, who often organize in local associations, in order to coordinate services and referrals more effectively. Researchers usually do not get involved in such activities. Over the years, our program has become a part of the local network of agencies serving Latinos with disabilities in Chicago. We have regular contacts with representatives from several agencies and have developed a reputation that facilitates access and mutual support. We have prepared several research proposals in collaboration with those agencies. This collaboration has contributed to the relationship building process. We are often seen as a resource to the agencies’ mission.

Build Consumers’ Strengths.

An important consequence of focusing on the strengths of individuals with disabilities is that they start to break the dependency that our service delivery system often reinforces. Letting consumers realize that they have to take an active role to address their own problems–as opposed to waiting for the professional to do it–is a critical step in any effective rehabilitation process (Balcazar & Keys, 1994). However, professionals often have difficulties recognizing the capacity of the individuals to help themselves. This is in part a legacy of the medical model and of the arrogance of our professional effectiveness mentality. How often do we hear ourselves whispering, "if only they would do what I tell them to do, things would get better?" This thought reflects our disbelief in the people’s capacity to become effectively involved. It helps to consider that the person who experiences the problem knows what the problem is, is familiar with the conditions that maintain it, and has some ideas about ways to solve it. On the other hand, one could ask if that is the case, then why are people still experiencing problems? The reason is that people who are marginalized have little confidence in their own capabilities and people with disabilities in particular are left to focus on their limitations and not on their strengths. Traditional service delivery systems reinforce this perception. Community psychologists believe in the strengths of the individual. We assume that by reinforcing strengths, competencies improve. Personal competency in turn reflects a sense of mastery and of control over the surrounding environment. This is a chain of positive events that we at the UIC program have often initiated, particularly in the context of minority youth with disabilities, by utilizing skill development and mentoring support to help youth succeed in attaining their personal goals (Balcazar, Fawcett, & Seekins 1991).

Be Persistent and Do Not Let Consumers Go when They Fail to Comply.

As a group, minority individuals with disabilities face multiple challenges that make compliance with traditional service plans difficult. Not surprisingly, they are often terminated from services. It is understandable that service organizations need to have clear policies to determine service eligibility. However, a degree of understanding and flexibility is often necessary to accommodate individuals who have a history of rejection, like some minorities with disabilities do. My staff has been left waiting a number of times, yet each time we follow up and try again. Some participants are startled by our behavior, to the point of asking, "why are you doing this? Why are you so interested?" Once they realize that we really care about what is happening to them and that we are there to help them, things improve. Of course, as research participants, they have the right to refuse treatment. However, we let them know early on, that we are willing to give them many opportunities to succeed in the process of attaining their transition goals.

Be Willing to Listen. If We Want to Reach out, We Should Be Able and Willing to Listen.

This is not a trivial point. In effect it is critical, because demonstrating a genuine and sincere concern toward the individual we are trying to reach is key for his/her acceptance and willingness to trust and collaborate. Personal relationships are built on trust. This requires good communication. As professionals, we are often used to telling people around us what to do or not to do. This is one-way communication. In order to build the kind of relationships required for successful outreach and dissemination efforts, we have to be willing to listen and learn from the people in the community. If we show we are willing to listen to them, then they will in turn be willing to listen to us. It is a reciprocal process of communication that benefits all.

Utilize Members of the Target Community in Outreach Efforts.

Some agencies employ members of the target community as paraprofessionals, responsible for outreach and follow up support. This is a well-known community organizing strategy. The leaders and other gatekeepers from the community are a great source of access. In some cases researchers can hire community volunteers to help distribute information to other community members. This strategy is often very effective, particularly if the researcher already has a good reputation in the community. We have often used paid and trained community volunteers to collect needs assessment surveys in the community. They can become excellent research collaborators and develop recognition and increased visibility in the community.

Meet People where They Are Instead of Waiting for Them to Come to You.

We have tried many strategies to get people to come to meetings. Probably the most effective one was a community organizing effort within the local Latino community, which met once a month in a central accessible location. We provided babysitting services and lunch, as well as reimbursement for transportation costs. We had a regularly scheduled meeting time and date, and people had activities and responsibilities to report every month. They were engaged and invested in the process. In other projects, for instance in inner city schools, we have had the usual difficulties of getting parents to show up to a planned meeting. They have jobs at odd hours; they may have transportation difficulties, baby- sitting problems, etc. These problems are common.

What we have chosen to do is to send case managers to meet the youth and their families in their own homes. During such visits, case managers are instructed to provide as much information as possible about the project and the issues facing the particular student. The case managers eventually develop good relationships with the parents, who then become more willing to participate in planned activities. Many parents eventually start calling the case managers to ask for help or advice. When this happens, we know we have gained their trust. We know that parents play a critical role in supporting or sabotaging the transition process of their son or daughter, so we seek their active involvement in the process.

Utilize Multiple Channels of Communication to Disseminate Information in the Target Community.

We have learned not to rely on a single channel of communication, hoping that people will get our message. We utilize multiple channels. Word of mouth, phone calls, mailings, pamphlets, posted announcements, and even newspapers and radio announcements are used sometimes in order to reach the desired target audience. The process is more difficult when the target community is not easily identifiable or located in a specific target area. Another outreach strategy is to rely on multiple organizational mailing lists–from multiple service providers–in order to distribute information. This is another reason to maintain an active network of collaboration with local social service agencies.

Volunteer to Help.

You build good will by increasing your visibility in the target community. One of the best ways to do this is by volunteering to help. There are multiple avenues to do this. I encourage my case managers in the local high schools to volunteer to help whenever possible. Teachers and administrators really appreciate that, and it strengthens the collaboration. It is another way to show that we care. We do the same regularly with other community organizations in our research partnerships. People come to expect reciprocity as a demonstration of our commitment to the community and its well-being.

Conclusion

Reaching out to minority individuals with disabilities should be part of a comprehensive service or intervention research program that ultimately attempts to improve their quality of life. This effort should be conducted as a partnership, with jointly determined goals and objectives, roles and responsibilities. Minorities with disabilities are tired of being "studied." They want allies who can support their struggle for a better quality of life and social justice.

These partnerships are much more than just attempts at data collection. To community members, this could mean access to resources, information and opportunities that they otherwise lack. To researchers and service providers this is an opportunity to develop, implement and evaluate innovative programs and interventions designed to have an impact in people’s lives. There are many challenges that minority individuals with disabilities need to overcome. We can be part of the problem or part of the solution. We have a choice.

Author Notes

Special Thanks to Yolanda Suarez-Balcazar for her useful feedback in the preparation of this manuscript. The author may be contacted by e-mail at Fabricio@uic.edu or by writing to:

Fabricio Balcazar, Ph.D.,

Department of Disability and Human Development University of Illinois at Chicago,

1640 West Roosevelt Rd Chicago, IL 60608

References

Alston, R. J., & Bell, T. J. (1996). Cultural mistrust and the rehabilitation enigma for African Americans. Journal of Rehabilitation, 62(2), 16-20.

Balcazar, F. E., Keys, C. B., & Suarez-Balcazar, Y. (2001). Empowering Latinos with disabilities to address issues of independent living and disability rights: A capacity-building approach. Journal of Prevention and Intervention in the Community, 21(2), 53-70

Balcazar, F. E., Keys, C. B., & Garate-Serafini, J. (1995). Learning to recruit assistance to attain transition goals: A program for adjudicated youths with disabilities. Remedial and Special Education, 16,237-246.

Balcazar, F. E., Mathews, R. M., Francisco, V. T., & Fawcett, S.B. (1994). The empowerment process in four advocacy organizations of people with disabilities. Rehabilitation Psychology, 39(3), 191-206.

Balcazar, F. E., & Keys, C. B. (1994). Teaching self-help to vocational rehabilitation clients. Directions in Rehabilitation Counseling, 5(5), 1-11.

Balcazar, F. E., Fawcett, S. B., & Seekins, T. (1991). Teaching people with disabilities to recruit help to attain personal goals. Rehabilitation Psychology, 36 (1) 31-42.

Balcazar, F. E., Seekins, T., Fawcett, S. B., & Hopkins, B. L. (1990). Empowering people with physical disabilities through advocacy skills training. American Journal of Community Psychology. 18, (2) 281- 295.

Duffy, K. G., & Wong, F. Y. (1996). Community Psychology. Boston: Allyn and Bacon. Fawcett, S. B., Suarez-Balcazar, Y. Wang-Ramos, P., Seekins, T. W., Bradford, B., & Mathews

M. R. (1988) The concerns report: involving consumers in planning for rehabilitation and Il services. American Rehabilitation, 14(3), 17-19.

Fawcett, S. B., White, G. W., Balcazar, F. E., Suarez-Balcazar, Y., Mathews, R. M., Paine, A. L., Seekins, T., & Smith, J. F. (1994). A contextual-behavioral model of empowerment: Case studies with people with physical disabilities. American Journal of Community Psychology, 22, 475-496.

Fujiura, G., & Yamaki, K. (1999). Trends in demography of childhood poverty and disability.

Exceptional Children, 66(2), 1-13.

National Council on Disability (1993, April). Meeting the unique needs of minorities with disabilities: Report to the President and the Congress. National Council on Disability, Washington D.C: Author.

Suarez-Balcazar, Y., Bradford, B., & Fawcett, S. B., (1988). Common concerns of disabled Americans: Issues and options. Social policy, 19(2), 19-35

Selener, D. (1997). Participatory action research and social change. Ithaca, NY: Cornell University.