READINGS
in Independent Living

A COMMITMENT TO INCLUSION: OUTREACH TO UNSERVED/UNDERSERVED POPULATIONS

2000
by Carol Bradley
The ILRCSF Vision

Our vision evolved from the need of people with disabilities to feel included. As a center for independent living we were committed to the values of consumer-control, cross-disability and broad community representation. All of these concepts reinforce the importance of listening to all of our consumers. The center for independent living environment is designed to create a place where persons with disabilities feel valued, understood and welcomed. The result, consumer empowerment and inclusiveness fuel the "fire in the belly" to advocate for system change. A key component of changing attitudes toward people with disabilities is successfully modeling inclusion.

The movement is based on the principle that persons with disabilities are part of our larger community and that the needs of this part of the community should be considered equally. If we are asking the community to include those of us with disabilities, we, as part of the movement, need to demonstrate inclusion--diversity both in disability and culture.

In order to expect success in consumer integration in the larger community, we need to demonstrate in our centers the value and benefits of inclusiveness. San Francisco is a city whose unique character, richness and teeming energy evolved from difference. In order to implement the independent living philosophy in the city, ILRCSF must reach many diverse groups. Celebration of difference is a fundamental part of independent living philosophy and is a necessity in a city with a strong heritage of culture and distinction.

Evolving A Framework

Needs assessment created a foundation for working paradigms. In some cases we had multiple requests from consumers in the community and developed a program or approach to respond. In several cases, we examined the demographic data on consumers served and found a great disparity between persons coming into the center and the population in our community-at-large. This helped us determine under- represented populations. Our experience taught us that just looking at pure demographics (generally referred to as underserved), is not indicative of whether or not services are needed. Numbers alone don't give a full enough picture. Instead, it triggers our need to do community organizing to determine what the needs are. In other words, we needed to position ourselves in a meaningful way to listen and hear community needs. Not all groups need independent living services. Some need a system of coordination; others need credibility and support. Certain groups may need access to bilingual, bicultural staff. We all have limited resources, but every group deserves access to independent living services and exposure to consumer empowerment.

We began working with different disability groups and over time expanded into distinctive cultural groups. We developed key partnerships with community leaders who helped us respond to the unique issues in that community. We translated the independent living philosophy in a culturally/disability appropriate way and adapted services in a community-responsive way. By using and developing relationships in the community, we were able to expand our horizons. Those relationships helped lead to other allies and built on the credibility and trust of those allies. Through our efforts in a number of communities, several models for outreach have emerged.

Single Staff Community Member Outreach/Services Model: This staff person is hired from the community as a generalist providing all core services. The staff person outreaches to the community and has credibility by being a community member. We used this approach in both the psychiatric disability community and the deaf/hard of hearing community. Part of the strength of this model is letting the staff person customize services in a way that meets community needs. The agency developed an initial framework and then hired staff and let them adjust the framework of service delivery in a way that met the community needs.

This model was able to produce some dramatic results through the system change efforts. Both programs generated effective access victories in their respective communities. There were significant changes in the mental health system locally and improvement of the emergency communication systems for consumers who are deaf.

However, there were some unique challenges. There were struggles around determining when staff issues were solved by accommodation versus training. Internally, there was tension between staff's individual disability identities and the ability to relate this to the issues of the larger disability community. These issues were complicated and we were on new "turf" since we were dealing with populations that were not traditionally included in the movement. An example of this type of issue that has come up recently in the psychiatric program is that of forced institutionalization. Many in the movement recognize deinstitutionalization issues as important to our community. Often, however, these issues are not fought or prioritized when they arise for persons with psychiatric disabilities. In the deaf community there was a large struggle with the social isolation within our own center and this issue was a priority. One solution was including interpreter time for staff to meet informally with other staff.

Staff Liaison Model: In this model staff members act as a liaison between a single disability group and the center. Collaborative ventures support disability group efforts in unique ways and adapt our services to accommodate the special needs. The group has its own purpose and the liaison stays in touch with the group and communicates needs back to the agency. Examples include our work with the Environmental Illness/ Multiple Chemical Sensitivities Network and the
Traumatic Brain Injury Group.

We were able to help with credibility for the environmental illness group since many settings did not consider EI a disability. We were able to provide our services in a safe environment, even if it meant meeting consumers at the beach in the fresh air. Inclusion in our literature, lists of disability types, using disability examples in presentations were valuable to the group in its work to get community recognition. For the traumatic brain injury group, the liaison set up a system to better coordinate services with other agencies providing consumers with services and advocating agency to agency for consumer choice in service delivery. From these collaborative activities we generated an annual community fair for traumatic brain injury consumers with all services present. Consumers and families have access to "one-stop" where they can browse, meet staff and check out their options. We avoid duplication and help consumers coordinate their services. We also have a peer support group led by a volunteer who is from the community.

Branch/Satellite Model: The branch/satellite approach creates a project around a distinct community. This approach was developed to reach the Latino community and the Chinese community. Cultural and language barriers justified a separate branch because they create as tough an obstacle to service provision as any geographic distance (in both cases consumers were also concentrated in their own neighborhoods). Bilingual, bicultural staff members were hired, working directly in the community. Both branch projects have a part-time outreach person focused on disability awareness and disability education, in addition to a full time person as a system advocate/generalist service provider. Services are partially out-stationed at an agency already accepted in the community (one of our key partners). This is both a convenience to the consumer as well as enhancement of our credibility by relying on the other agency's credibility in the community.

Direct services, information and referral, outreach visits, targeted mailings, translation of ILRCSF brochures and other materials such as Fair Housing Act, ADA, SSI/SSDI booklets and information sheets, a separate phone line, and peer support were all done in other languages.

Our branches get regular publicity through staff-hosted columns and shows in the cultural media on disability issues. We have found it easier to get media coverage in these communities than in the so- called mainstream press. We have developed creative outreach strategies in these communities: a story book in Spanish about a Latino person with a disability who gets help through independent living services; presentations of a disability awareness puppet show to Latino elementary students; and a poster contest in the Chinese community (described below).

One Community's Experience: The Chinese Branch/Satellite ILRCSF learned through trial and error. We used the same basic principles in each community, but, of necessity, the specific actions are reflective of each particular community. The need to work in the Chinese community came first from dawning awareness that we were serving a small number of Asian consumers in a city where roughly one-third of the population is Asian (largely Chinese). Herb Levine, program services coordinator, formed an alliance with several key social service people in the Chinese community. These allies knew a consumer with a visible disability who had experienced discrimination in the Chinese community and brought him in with several bilingual consumers from Chinatown. We started by calling a meeting together to talk about issues and concerns in the community for people with disabilities. The number one issue for the group was access to Chinatown, a community built on the famous hills of San Francisco.

With ILRCSF's help, a group formed and began working on an agenda to make more places accessible. ILRCSF provided the expertise on access laws and the city structure to get things done.

The language barrier became a central one since not only many of the consumers but also other key people did not speak English. In the early days, meetings were in English with a Chinese translator. However, commitment to consumer leadership meant a shift. Only our staff didn't speak Chinese. The community members could not have meaningful charge of the group unless the meetings were in the native language of the community. Thus, it was a major accomplishment when the meetings switched to Chinese, with an English translator allowing our staff to participate. The meeting site was in a Chinatown location, central and familiar to the group. This was now their group and agenda. The result was a consumer group, Disabled People for an Accessible Chinatown, and community partners (Chinese for Affirmative Action and Chinatown Resource Center) working on community access through media and community disability awareness.

One of the first successful projects that grew from the meetings was a press conference about the lack of physical access in Chinatown. The story hit the front page of the Chinese Press. A result of the group efforts is increased access in Chinatown small businesses. One difficulty that consumers faced was that businesses would not wait on consumers with visible disabilities due to cultural views of disability being "bad luck." A creative strategy focusing access in the forefront of the Chinese community evolved. Community members felt that there needed to be an on-going visual presence on disability to educate community members in a culturally-sensitive way. The idea for an annual poster contest, widely distributed in the community, is still being successfully used. In the Chinese community, disability is hidden, viewed as a responsibility of the family to take care of "its own." This project creates a visual reminder normalizing disability.

The annual poster contest challenges community "artists" to create a visual display. The winning choice is made into a poster widely distributed in the community. Prizes were given and a public ceremony gave visibility to the artists. Over time the concept evolved into a calendar so as to increase the utility and likelihood of more widespread displays. After four years, the project has succeeded in bringing in both financial support and time from community members. A local member of the Board of Supervisors gives out the prizes each year and participates in the awards ceremony. Supervisor Yee is not just a politician who shows his face at the event he is involved as a member of that community. This year, as a result of the partnership, ILRCSF and Supervisor Yee each recognized the other for their efforts.

This early community work also led to funding. A year or two later, ILRCSF created a Title VIIC funded branch/satellite to serve the Chinese community of San Francisco. There were challenges to serving the community. It was important to have the language capability to respond to a consumer who called the agency. It was not enough to translate materials; the concepts do not always translate exactly, and there must be much discussion around terminology. There are great cultural differences among the Asian community, so we needed to be knowledgeable about the make-up of the San Francisco community. We needed to have staff that represented the group culturally to successfully reach the community. Cultural background is as important as speaking the language. To insure success, it is critical to know the community make-up before translating materials or hiring staff.

There are cultural values that have become a part of our work in this community. Due to the differing role of family in the Asian culture, we work with family members along with the consumer. It is important to include and educate family members in order to empower the consumer. Thus, our workshops are often filled with family members as well as consumers. Cultural competence means responding to issues of importance to the community. For example, issues like immigration are part of this community. Becoming a citizen is difficult, and until recently our local Immigration and Naturalization Service didn't know what reasonable accommodations were, let alone how to provide them. ILRCSF staff have tried to educate staff at INS and have advocated within that system, as well as with Social Security and the Department of Social Services, in order to secure appropriate services for the Asian community.

As with any new area, struggles and challenges require new strategies. One issue that has come out is recruiting staff members with the ability to understand both their culture and the independent living philosophy and blend the best of both into a culturally appropriate IL philosophy. Staff's written English language skills may be a problem. When English is a second language, information may not get communicated in other agency activities. Also, there are often different values that come up that may conflict with agency values and need to be discussed in an open dialogue.

ILRCSF has experienced this around issues involving psychiatric disabilities, gender roles, cultural and sexual orientation values. There are difficulties finding staff members since the pool is often small. There are sometimes competing loyalties between staff's loyalty to their community versus the larger disability community. They have to be able to identify with both communities to make the bridge successfully. The process of bringing in new communities will change what you do in ways that you may not be able to anticipate. For example, since consumer empowerment is an issue, one way our organization gets feedback to insure quality services is to call consumers and ask follow-up questions. This practice was seen as conflicting with the cultural norms in the community and staff was concerned that the community would see this as a lack of trust in the staff member's work. Due to the cultural issues involved, it was an issue that the staff member had difficulty raising in supervision because of cultural perception that this would result in a loss of face. When the issue finally came up, a group brainstorming session developed strategies to get consumer feedback in a culturally sensitive way.

Some Necessary Ingredients

  • Strong commitment to principles at the management level. Being inclusive while working in diverse communities will impact how the center operates in ways that are not possible to predict. Management must bring openness and flexibility into this endeavor. Getting the buy-in of the agency is important, i.e. board, staff, management, volunteers.
  • Willingness to frame independent living philosophy in a way that is inclusive. Some definitions of the philosophy (especially early ones) by their nature eliminate both disability and cultural groups. The focus is on where to live rather than consumer choice and community participation. For example, describing the goal as living on your own focuses on individuals with physical disabilities and is not the way many cultures would choose to live. Describing the philosophy as centered around consumer choice and living up to a person's potential is more inclusive. As more and more groups become a part of the movement this will evolve!
  • Spirit of exploration and adventure! You will explore uncharted territory and sometimes your efforts will fail. You will try new things and they will not always work, but this may still result in bringing in new communities. Wonderful things, new energy and excitement will come into your center.
  • Dedication to building meaningful relationships and trust in the community. This process takes time. Your agency must demonstrate that it understands enough of the issues so that persons coming in can trust that you will make your best efforts to serve them. Follow through is important. Your agency may need to examine its viewpoints around the difference between tolerance and inclusion. For consumers to have a sense of belonging at the center, there must be evidence that the center understands by demonstrating its inclusion. At ILRCSF, staff was shocked when an outcome of the LesBIDis (Lesbian Bisexual Disabled women's group) was a suggestion that the agency participate in the local gay pride event. Some staff objected saying that we were not a gay agency; yet, this was never questioned when the agency participated in Chinese or Latino community events. The management staff was surprised at the reaction given the fact that the agency has some gay staff.
  • Recognition that you can't wait for funding to hire staff members from every community. Community building can be done without staff members from every community. In some cases,
    successful organizing will lead to increased funding options. It is a recipe for failure to expect your staff to do more with the same resources, but you may use them differently or find and train volunteers. Commitment to diversity means that including all groups in the center's area is valued and becoming more representative reflects the center's values.
Conclusion

The key to diversity is making people feel welcome and included. The key to reaching a community is listening and incorporating what you learn. Inclusion of cross disabilities and cultures isn't really rocket science. Those of us committed to this movement already know something about this from our own experience. We all want people around who genuinely care about our needs without assumptions or taking over. We want full access, equal opportunities and acceptance in the community with recognition of our contributions. We want to be welcomed in society, not just tolerated.

We can all be part of creating that kind of world!

About the Author

Carol Bradley's involvement in the independent living movement spans the last 10 years. She has been a volunteer, a board member and a manager in centers for independent living and has served on the statewide independent living councils of two different states. For the past two years, she has served as the chair of the California Foundation for Independent Living Centers, the state association of centers. Carol developed a visual impairment during law school and subsequently practiced law in the areas of civil rights, employment and labor. In addition to her CIL experience, she has been involved in advocacy and empowerment of disenfranchised groups in the legal system and as a manager/board member in grassroots organizations. Carol currently works as the
development director of ILRCSF.

Contact Information

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The mission of the IL NET is to provide training and technical assistance on a variety of issues central to independent living today--understanding the Rehab Act, what the statewide independent living council is and how it can operate most effectively, management issues for centers for independent living, systems advocacy, computer networking, and others. Training activities are conducted conference-style, via long-distance communication, webcasts, through widely disseminated print and audio materials, and through the promotion of a strong national network of centers and individuals in the independent living field.

ILRU is a program of The Institute for Rehabilitation and Research (TIRR), a nationally recognized, free-standing medical rehabilitation facility for persons with physical and cognitive disabilities. TIRR is part of TIRR Systems, which is a not-for-profit corporation dedicated to providing a continuum of services to individuals with disabilities.

Substantial support for development of this publication was provided by the Rehabilitation Services Administration, U.S. Department of Education. The content is the responsibility of ILRU and no official endorsement of the Department of Education should be inferred.

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