Tribal Disability Concerns Report Method: Respecting Sovereignty and Building Capacity

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September 2005

Census 2000 reports that about 2.5 million people identified themselves as exclusively being American Indians or Alaska Natives and that more than 538,000 American Indians and Alaska Natives live on reservations or tribal trust lands. While American Indians and Alaska Natives as a group have one of the highest disability rates (24.3%) in the country,

tribes and villages often lack information and tools for developing programs to address the needs of their members with disabilities. The Tribal Disability Concerns Report Method (TDCRM) is a community development process designed to help local tribal and village members assess their needs, develop a consensus agenda, and build commitment to an action plan. This practice guideline will discuss the TDCRM process and how it can be used to help tribes and villages identify disability issues and create employment opportunities for American Indians and Alaska Natives with disabilities.

The Importance of Respecting Tribal Sovereignty

In a nutshell, the TDCRM process involves: (1) conducting a tribal concerns survey about disability issues, (2) holding tribal discussions of the results, and (3) developing an action plan to address the most critical issues. The first step involves gaining permission from the tribal council or similar governing entity. Once permission is granted a survey is then developed by the tribe’s own members. Preferably, five to six tribal members with disabilities form a Steering Committee that will be responsible for developing the TDCRM survey. The Steering Committee uses the Concerns Report Menu, a list of 171 items, organized under ten categories (e.g., Tribal Advocacy, Healthcare, Traditions), to create a survey that reflects the tribe’s unique strengths and weaknesses. The Steering Committee is encouraged to modify the categories to reflect local conditions. After the TDCRM survey is designed it is distributed to tribal council members or a survey reviewer identified by the steering committee. Upon approval it is distributed to tribal members with disabilities in the community. Returned surveys are then analyzed by the American Indian Disability Technical Assistance Center (AIDTAC) which produces a written report of the findings. Then community planning meetings are held to discuss the survey result findings. These meetings are designed to formulate an action plan for addressing the issues most important to tribal members with disabilities. This plan results from local priorities rather than a standard set of programs presumed to be important by outsiders. The TDCRM process respects each tribe’s sovereignty and trusts its judgments about members’ needs. It also helps tribes to build the capacity to address their own issues.

Case Study of a Particular Tribe Involved in the TDCRM Process

The Northern Cheyenne Tribe, Tse-vesta-hase, disability group was organized in 1995 to represent tribal members with disabilities and to address all disability related issues. The group agreed to actively participate in the TDCRM survey process by providing assistance in recruiting the steering committee, which would develop the TDCRM survey from the Concerns Report Menu. Tse-vesta-hase would also be involved in ongoing technical assistance from The University of Montana Rural Institute’s AIDTAC. The steering committee created a brief, eight category survey. These surveys were distributed and collected between October 2003 and April 2004.

The purpose of the community planning meeting was to discuss the findings of the TDCRM community survey and to organize a committed group response in addressing those issues identified from the TDCRM process. A listing of the most significant strengths and problems are presented in Table 1 with their average percentage ratings of importance and satisfaction in parentheses. Survey items that were defined as strengths received high ratings for both importance and satisfaction while those items that were categorized as problems scored high in importance but low in satisfaction.

The rating scale is developed from survey answers that range from 0 to 4 (0 being the low end – not satisfied or not important to 4 being the high end – very satisfied or very important). The number of respondents and how they rate each issue’s satisfaction and importance, determines the rating of issues and the corresponding strengths and weaknesses. For example in the "Strengths" category "Personal Assistance" received a high importance rating of 86% and a high satisfaction rating of 70% - indicating that personal assistance is an important issue that respondents felt satisfied with.

Conversely, in the "Problem" category "Job Training" programs received a high importance rating of 94% but a very low satisfaction rating of 26% indicating that although job training is important to the respondents they were not satisfied with the types of job training programs available in their community.

Note that the listing of strengths is relative to problems. For example, the availability of good medical care is listed in the "relative strengths" column because it was the fifth- highest strength item. Whether a rating of 49% satisfaction justifies its listing as a strength is open to discussion.

Twenty-eight respondents returned completed surveys. Of those, twenty-seven (96%) were Native American; the average age of respondents was 40.5 years of age; thirteen (46%) respondents reported that a family member had a disability: Spouse– 5 (18%), parent– 4 (14%), sibling–3 (11%), child–3 (11%), and niece/nephew –1 (4%); eighteen (64%) respondents were male. Respondents reported an average of 12.25 years of education. Four (14%) respondents reported being employed full time, eight (29%) reported being employed part-time, six (21%) reported being unemployed, three (11%) reported being retired, and four (14%) were students.

The group considered the top two employment issues, job training programs and small business start-ups, but chose not to address them at the time. Instead participants chose to focus on two items from the Relative Problems category: (1) Transportation and (2) Help in solving household maintenance problems. They also chose to address one item from the Relative Strengths category, (3) Doctors and nurses knowledgeable about Tribal members with disabilities. While this item was listed as a relative strength, they chose this item because the level of satisfaction was quite low. One participant emphasized the need for Indian Health Service (IHS) providers to become more knowledgeable about the types of disabilities that tribal members have. The participant felt that if the IHS health care providers took the time to learn about their individual client’s beliefs about disabilities, an improved communication between the IHS and tribal members with disabilities would result.

Action Plan

At the meeting the participants discussed how to protect and build on the strengths in the community, and ways to solve the indicated problems. The assembled group agreed on the following plan of action that would address the three problem areas.

1. One member of Tse-vesta-hase would approach the Tribal planning committee to represent their concerns about having tribal members with disabilities involved in the planning process of an upcoming transportation project that the tribe was preparing for, the member would report back to the group within the week. Also, the group mentioned a petition drive to gain more community support should their first approach prove to be ineffective.
2. The group designated another member to contact the Northern Cheyenne Housing Authority (a Federal Housing and Urban Development program) to address the issue of developing and implementing a universal accessible housing policy. A few of the meeting participants stated that while housing does build access ramps, most of the other household fixtures remain substandard in accommodating people of short stature.
3. Finally, one member of Tse-vesta-hase would contact the IHS director to discuss meeting with the group to schedule a cultural sensitivity workshop.

The TDCRM process allowed the Northern Cheyenne disability group, Tse-vesta-hase to plan additional community meetings to address issues including transportation and accessible housing, two vital components of creating employment opportunities for tribal members.

Conclusion

The TDCRM is adaptable to each tribe’s particular circumstances and contributes to the concept of self- determination that is recognized by tribes to be the best approach to addressing tribal disability issues. It can be easily adapted for use by different tribes to address their disability infrastructure issues (housing, employment, accessibility, and transportation). The TDCRM survey can also be designed to focus upon creating laws and policies that benefit tribal members with disabilities. One of the most important aspects of the TDCRM process is the voice that it gives to the people involved in the process by helping them identify where they are and to provide a clear direction and purpose that is beneficial to all participants with disabilities. AIDTAC staff are available to work with tribes that are interested in becoming involved in the TDCRM process.

If tribes wish to conduct the TDCRM process on their own, contact the following person for TDCRM tools and materials to begin the process:

Hank Scalpcane, Technical Assistant Specialist (406) 243-4815

Endnotes

1 U.S. Census Bureau. (February 2002). The American Indian and Alaska Native Population: 2002. Retrieved September 19, 2005 from census.gov

2 U.S. Census Bureau. (2003, October 20). American Indian and Alaska Native Heritage Month: November 2003. Retrieved September 19, 2005 from census.gov

3 U.S. Census Bureau. (2004, July). Disability Status: 2000 – Census 2000 Brief. Retrieved September 19, 2005 from census.gov

4 Development of the TDCRM is funded by a subcontract with the Research and Training Center on Full Participation in Independent Living at University of Kansas (#H133B000500).