Strategies for Reaching Out to Minority Individuals With Disabilities
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
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.
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
Visit the ADA Project Web Page: http://www.uic.edu/depts/idhd/empower/adaproject.htm
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