ࡱ> S))(((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((()))5@ Dbjbj22 #NXXP I !@#T#hhhTij#fooR8p8p0hw5:o $RjP }Q5ʁVH hwhw\||| hw hw|}||hnK @ hwo +8rh8n !t,%@## t,Lv[TA|YD4R[+##D@'N.##@ Wisdom of the Storyteller A Conference to Build Research Capacity in Indian Country Priscilla Sanderson, Conference Chairperson Conference Proceedings John Sargent, Editor Storyteller image painted by Joe Maktima American Indian Rehabilitation Research and Training Center  Institute for Human Development Arizona University Center on Disabilities P.O. Box 5630 Flagstaff, AZ 86011 (928) 523-4791 Voice ( (928) 523-9127 Fax ( (928) 523-1695 TDD Website: http://www.nau.edu/ihd/airrtc ISBN _________________ Funded by the National Institute on Disability and Rehabilitation Research (NIDRR) Office of Special Education and Rehabilitative Services, U.S. Department of Education, Washington, DC Grant No. H133B980049 The contents of this report are the responsibility of the American Indian Rehabilitation Research and Training Center and no official endorsement by the U.S. Department of Education should be inferred. Northern Arizona University is an Equal Opportunity/Affirmative Action Institution This report is available in alternate formats by contacting the Institute for Human Development at (928) 523-4791. Table of Contents Conference Collaborators iv Conference Planning Committee v Conference Theme and Objectives vii Acknowledgements viii Comments from Conference Participants x Session 1 Rehabilitation Research: An Ongoing Need 1 Bobbie J. Atkins, Ph.D., CRC Session 2 Stories of Help and Hope: American Indians and Alaska Natives with FEtal Alcohol Syndrome and Related Conditions 18 Robert M. Schacht, Ph.D. Session 3 Tutuwutsi: Embracing Stories Through Community Needs Assessment 41 Lee R. Gaseoma, Ed.D., Winona Reid, and Mark Samos Session 4 Wisdom of our Collective Experience in Conducting Research with American Indians who have Disabilities 60 Jamie D. Davis, Ph.D., Jill Shepard Erickson, M.S.W., A.C.S.W., Walter H. Hillabrant, Ph.D., Kelly Keemer, Catherine A. Marshall, Ph.D., CRC, Jennifer Olson, Ph.D., and Paulette Running Wolf, Ph.D. Session 5 AIRRTC Training Project: A Summer Institute for Sign Language Interpreters and Persons Working Within American Indian/Alaska Native Deaf Communities 84 Linda Carroll, Tupper Dunbar, Mary Mooney, and Julie Anna Clay Session 6 Developing Rehabilitation Education Programs in AMERICAN Indian Nations 100 Madan Kundu, Ph.D., CRC, NCC, LR, FNRCA, and Alo Dutta, Ph.D., CRC, MPA, Ellen Chesley, and Dan Hopkins Session 7 Vocational Rehabilitation of Indigenous Populations: A Time for Student Dialogue 123 Gary M. Brown, Leroy Jim, and Jamie Logan Session 8 Overview of NIDRR Grant Competition Process 147 David Esquith Session 9 Stories of Sampling: Transforming National Surveys and Statistics for American Indian and Alaska Native Populations 158 Margie White, Ph.D. Session 10 Increasing Your Capacity to Conduct Disability and Rehabilitation Research 172 Irvine E. Epps, Ed.D., and Darrell K. Simmons, J.D. Appendix A Conference Participants 184 Appendix B PROCEEDINGS Contributors 192 Conference Collaborators The Honorable Steven Ginnis President, Tanana Chiefs Conference, Inc., Alaska The Honorable Paul Tosa Governor, Pueblo of Jemez, New Mexico The Honorable Bobby Whitefeather Chairman, Red Lake Band of Chippewa Indians, Minnesota The Honorable Samuel N. Penney Chairman, Nez Perce Tribe, Idaho The Honorable Wayne Taylor, Jr. Chairman, The Hopi Tribe, Arizona James Tutt President, Crownpoint Institute of Technology, Crownpoint, New Mexico Tom Davis Acting President, Fond du Lac Tribal and Community College, Minnesota Morgan G. Otis, Jr., Ph.D. President, D-Q University, California John Cheek Executive Director, National Indian Education Association (NIEA) Treva M. Roanhorse President, Consortia of Administrators for Native American Rehabilitation (CANAR) Bobbi Atkins, Ph.D., CRC Professor and Project Director, Building Capacity Online, Interwork Institute, San Diego State University, California Madan Kundu, Ph.D., CRC Professor and Project Director Coordinator, Rehabilitation Capacity Building Project Southern University, Louisiana Sylvia Walker, Ed.D. Director, Howard University Research and Training Center, Washington, DC Conference Planning Committee Priscilla Lansing Sanderson, M.S., CRC Program Director American Indian Rehabilitation Research and Training Center, Capacity Building for American Indians Project, Institute for Human Development, Arizona University Center on Disabilities, Northern Arizona University Flagstaff, AZ Bobbi Atkins, Ph.D., CRC Professor and Project Director Building Capacity Online Interwork Institute San Diego State University San Diego, CA Connie Berg Project Director Red Lake Band of Chippewa Indians Red Lake, MN Jackie Bisbee, B.A. Project Director Tanana Chiefs Conference, Inc. Fairbanks, AK John Cheek Executive Director National Indian Education Association Alexandria, VA Julie Anna Clay, MPH Training and Dissemination Coordinator American Indian Rehabilitation Research and Training Center, Institute for Human Development, Arizona University Center on Disabilities, Northern Arizona University Flagstaff, AZ Tom Davis Interim President Fond du Lac Tribal and Community College Cloquet, MN Lee R. Gaseoma, Ed.D. Project Coordinator Capacity Building for American Indians Project, American Indian Rehabilitation Research and Training Center, Institute for Human Development, Arizona University Center on Disabilities, Northern Arizona University Flagstaff, AZ Mari Guillermo, M.S. Project Coordinator Building Capacity Online Interwork Institute San Diego State University San Diego, CA Elmer Guy, MRA Dean of Instruction Crownpoint Institute of Technology Crownpoint, NM Rebecca Holland, B.S. Program Manager Jemez Vocational Rehabilitation Project Jemez Pueblo, NM Madan Kundu, Ph.D., CRC, NCC Professor and Coordinator Rehabilitation Capacity Building Project Rehabilitation Counseling Program Southern University Baton Rouge, LA David Miles, M.Ed. Project Director Nez Perce Vocational Rehabilitation Services Lapwai, ID  Winona Reid, B.A. Instructional Specialist Senior Capacity Building for American Indians Project, American Indian Rehabilitation Research and Training Center, Institute for Human Development, Arizona University Center on Disabilities, Northern Arizona University Flagstaff, AZ Treva M. Roanhorse, B.S. President Consortia of Administrators for Native American Rehabilitation Window Rock, AZ John Sargent, M.B.A., M.Ed. Instructional Specialist Senior American Indian Rehabilitation Research and Training Center, Institute for Human Development, Arizona University Center on Disabilities, Northern Arizona University Flagstaff, AZ Reva Shircel, B.S. Director of Education Department Tanana Chiefs Conference, Inc. Fairbanks, AK Sylvia Walker, Ed.D. Project Director Howard University Research and Training Center Washington, DC  Conference Theme and Objectives  The American Indian Rehabilitation Research and Training Center (AIRRTC) chose the theme Wisdom of the Storyteller to represent the idea of the AIRRTC passing on its collective wisdom in research, training, and capacity building to this and future generations. We wanted to address the fact that there is a great need for American Indian and Alaska Native rehabilitation researchers in the United States, and to gather and present information to encourage and guide such researchers in their work. Three objectives guided the planning, organization, and implementation of the conference: To provide technical assistance on applying for short- and long-term rehabilitation training grants and other rehabilitation-related research and training grants; To provide training on priority setting and planning for rehabilitation research; To provide training on research strategies and resources. Acknowledgements The American Indian Rehabilitation Research and Training Center is honored to have had experts respected in the field of disability and rehabilitation research take time to share their knowledge and experience. These researchers embody the spirit of the Native storytellers whose responsibility it was, and still is, to pass on the culture and wisdom from one generation to the next. A big thank you is extended to the graduate students who presented their original research papers at the conference. Your presentations during the general session, Vocational Rehabilitation for Indigenous Populations: A Time for Student Dialogue, piqued the interest of many, set examples for others, and demonstrated that there are people new to the discipline willing to invest in their own growth and development. Julie Anna Clay, AIRRTC Training and Dissemination Coordinator, greatly helped clarify important information for these conference proceedings. Your experience in disability and rehabilitation research and training proved invaluable once again. Your recommendations for the occasional inclusion of definitions and introductory material, and advice on disability language usage and etiquette, shaped the contents for universal acceptance. The American Indian Research and Training Center is grateful to Libby Reeg, Office Supervisor. Your attention to detail, ability to manipulate text in multiple computer software programs, and eye for aesthetics added form and beauty to the final product. Thank you to Amber Hernandez, NIDRR Scholar, Julie Mitchell, graduate assistant, Jen Ayers, NIDRR Scholar, and AIRRTC support staff members who assisted in the preparation of the conference proceedings. Amber was the first person to begin reading the conference transcripts, synthesizing material, and assisting in the collection of additional resources for the proceedings. Julie and Jen helped edit the graduate student papers and enter the changes on the computer. 1  REHABILITATION RESEARCH: AN ONGOING NEED Presenter: Bobbi J. Atkins, Ph.D., CRC Online Capacity Building Project, Interwork Institute, San Diego State University  People engaged in the research process believe in the quality and competence of humans and are eager to find strategies to improve the quality of life for individuals with disabilities. Research that has the potential to improve the human condition is essential. This presentation focuses on some of the major research issues, challenges, and opportunities in the field of rehabilitation, focusing on participatory, community-based research, in which people of color are involved in the research process. Suggestions are provided to help researchers develop viable rehabilitation research proposals.  Why Conduct Rehabilitation Research? Research can ensure that a diversity of methods is employed to better understand the challenges and strengths of underserved populations. Research findings can stimulate positive actions in the policy, litigation, and service areas. Research tools can be used effectively to hold people accountable when they act in discriminatory ways, such as violating the Civil Rights Act and related legislation. Participatory Action Research The National Institute on Disability and Rehabilitation Research (NIDRR) recognizes the need for persons being studied to participate in the design and conduct of all phases of the research that affects them. This is called Participatory Action Research (PAR). It is relevant for all research, especially research that focuses on people of color, who have traditionally been studied by others who did not have an unbiased view going into the research process. The PAR approach is viewed as a social action movement that better ensures inclusion. In the past, people who agreed to participate in research studies gave generously of their time and their energy, only to be shocked at the results because they had not had a chance to provide input to the research process. If the people being studied are part of the initial research phases, they are more likely to buy into the objectives and the process. Invested people are able to provide direction. Researchers and participants teach and learn from each other. Everyone involved is a full partner. In the end, hopefully, they will put the research results into practice. The PAR model does not mean that everyone is going to have the same level of research skills. Collaborating allows people with different skills to pull together and develop sound research results. Consumers have perspectives on their needs. Researchers can help consumers discover how they can use that information to get their needs met. The beauty of connecting in the context of the PAR model is that everyone comes from an asset perspective, the belief that all people have something positive to contribute. A lot of the research that has been done on people of color has been from a deficit model, in which those under study are viewed as people lacking in one or more qualities or resources. It is critical that the research of the future focuses on the strengths and assets of people of color who have disabilities and not promote a deficit mentality and associated methods. Asset-oriented research findings can be used to promote system and individual changes that allow for people with disabilities who are underserved to utilize these assets in employment, independent living, personal choices, and quality living. Protection of Human Subjects The protection of human subjects is at the heart of quality research. There will be less damage if, in the beginning of the study, researchers attempt to foresee what could happen. There have been research-related horror stories about studies where the protection of human subjects was not at the forefront of the research design. One that stands out is the Tuskegee studies, in which African-American men who had contracted syphilis were denied information about and treatment for their disease so that the effects of untreated syphilis could be studied. San Diego State Universitys Institutional Review Board The Committee for the Projection of Human Subjects (CPHS) is San Diego State Universitys institutional review board. It functions to: Determine and certify that all projects approved by the CPHS conform to the regulations and policies set forth by the Department of Health and Human Services (DHHS) regarding the health, welfare, safety, rights, and privileges of human subjects. Assist the investigator in complying with federal and state regulations in a manner that permits accomplishment of the research activity (San Diego State University, 2002). The scope of responsibility for the CPHS, as it appears on SDSUs Institutional Review Board website (2002), follows. 1. The CPHS reviews research when procedures are proposed to obtain information about a living individual through the use of a survey, interview, observation, experimentation, or the analysis of human tissues, records, samples or other data previously collected from human subjects. 2. All research involving human subjects must be reviewed and approved by the Committee on Protection of Human Subjects (CPHS) in advance of study initiation. The protection of human subjects board is not there to make life miserable. The board is there to give legal advice and ask the tough questions to ensure that human subjects are protected. Research Grant Proposal Process Research grant proposals will usually include the following components: Budget and Budget Justification Abstract Importance of the Problem (e.g., evidence of need, target population) Design of Research Activities (e.g., research approach, methodology, hypothesis, design, outcomes, summary and conclusion) Plan of Operation Adequacy of Budget Plan of Evaluation Project Staff Adequacy and Accessibility of Resources Other (e.g., compliances) References and Resources Assurances, Certifications, and Disclosures Appendices The grant proposal reviewers should see that the proposal writers have a comprehensive understanding of what the issues and challenges are and that the organization is in a perfect position to be able to bring some positive outcomes into being. One of the components of a research proposal is the budget and justification section. Researchers should keep in mind the amount of funds needed to support the objectives and activities that have been outlined. These funds drive the creation of the budget. The budget must be part of the proposalwriting process from the beginning, not an afterthought. The abstract provides an overview of the project. It should highlight the importance of the problem and the level of involvement of the individuals or the organization under study. The target group or groups from which data will be collected needs to be identified and described in the proposal. The selection of the target population is based on (1) data that is available to outline the problem, (2) successes or lack of successes that have happened in the past, (3) projections for the future, and (4) why the proposed project is going to make a difference in the lives of people with disabilities. The grantwriting team needs to let the funding agency, via the peer reviewers, know why the particular group of individuals chosen is important for the data sought. The section on design of the research activities ties back to why the research is important and links ahead to the outcomes expected, the plan of operation, the adequacy of the budget, why the budget is necessary in order to be able to carry out the activities identified, and the plan of evaluation. Evaluation is not just something that is done at the end of the project or as a last minute addition to the proposal. Researchers should decide how to measure the outcomes soon after the project is conceived. An evaluation could measure the number of people who participated in training, the number of individuals who received better services, or the number of individuals who learned more about rehabilitation. The proposal-writing team should answer the following questions in the section on project staff: What are the qualifications of the people who are going to be conducting the research? What unique characteristics do they possess? What background do they have that is going to help them carry out the research activities? The adequacy and accessibility of organizational resources that are going to support the proposed project need to be described. People are resources. The community is a resource. The building in which work will be performed is a resource. Linking the resources available to other activities going on in the organization or tribe is likely to have a very strong impact on the grant reviewers. Each funding agency will ask for its own assurances, certificates, and disclosures. Obtaining these documents may take longer than expected, so the process should be started early. It is not possible to express in the narrative or in the appendices the grandeur of the organization writing the grant. Be selective. Examples that support the points made in the narrative should be included in the appendices. The appendices should tie directly to other parts of the proposal. Information that has nothing to do with the research being proposed should not appear in the appendices. Sources of Information The internet is a resource for gathering data, but it should not be the only place used to find sources. Grant writers and researchers can read books on the subject being studied. There is a wealth of resources available to learn about the complexities of the problems identified. Rehabilitation Research Introduction to Research The mission of present and future rehabilitation researchers is to investigate questions and issues that are important to people of color who have disabilities. Topics to avoid are those things that are nice, or interesting, but probably are not going to be meaningful in terms of helping to improve the quality of lives for people with disabilities. The research effort has to be on the critical issues. Research is an active process that leads the researcher into unknown areas of inquiry. Thus, it involves flexibility, sound research questions, a lack of bias, and a willingness to follow the process through to completion. While empirical research is probably the most common approach, it is not the only one that is worthwhile. There is room for all ethical approaches. Empirical research is research which is based on observed and measured phenomenathat derives knowledge from actual experience rather than from theory or belief (Mississippi State University Libraries, 2002). Understanding of human nature can also come by talking to people and listening to what they share. That information can then be shaped into a format that facilitates their growth and development and allows it to be passed on to other individuals. According to Ary, Jacobs, and Razavieh (1996), Educational research is the way in which one acquires dependable and useful information about the educative process (pp. 19-20). The goal of educational research is to discover general principles or interpretations of behavior that can be used to explain, predict, and control events in educational situations; in other words, to formulate scientific theory (Ary, Jacobs, & Razavieh, 1996, 19-20). The control part can be applied to prevention in the rehabilitation realm. Researcher bias will influence research being performed and could make it worthless. Biases can occur early in the development of the hypothesis and research questions or later in the interpretation of the findings. The clarity and the objectivity with which data are interpreted are critical. Two people can look at the same data and come up with different interpretations. Everyone has biases. Researchers need to state their biases in the first part of the paper(before discussing their researchif elimination of them is not possible. This insures that readers understand the researchers viewpoint right away. Ary, Jacobs, and Razavieh (1996) describe two types of educational research and provide a few examples of each: quantitative (experimental and non-experimental) and qualitative (ethnographic, case study, and content analysis). Qualitative and quantitative approaches should not be in competition or judged as either good or bad, positive or negative; each of these approaches should be utilized for effective inquiry into the human condition. Qualitative Research Many of the qualitative strategies seem to complement the oral nature of Native culture. Each story told has a message and research offers a way for the story to be told. Ethnographic research refers to the collection of data about a situation or a cultural group through extensive interviews and observation. The researcher sits down with people and asks them questions about their experience. This is important, because it is through individual stories that collective information is born. A case study typically involves an in-depth examination of one individual. The researcher seeks to uncover how the person impacts his or her environment and how the environment impacts the individual. The subject's entire range of behavior and the relationship(s) of these behaviors to that person's history and environment are described. A researcher performing content analysis pores over a written document (e.g., report or interview transcript) to identify themes, trends, or patterns. Researchers need to think creatively about strategies, particularly those that might be useful with American Indian and Alaska Native Nations and tribes, to answer the question: What are some things of value that can be brought into the research process to encourage participants to be active in the research process? When study participants hear themselves speak for the first time on a tape recorder or see their spoken works in the form of a transcript, they often feel a sense of empowerment. It says to the participants, "You have a voice and your voice is important. Listen to yourself." It really is exciting when people hear or see what they have said. Research and Evaluation The Southwest Educational Development Laboratory (SEDL) (2001) was awarded a grant from the National Institute on Disability and Rehabilitation Research (NIDRR) to look at research and rehabilitation. The project report (2001), Utilization Measurement: Focusing on the U in D & U, stated that, "The purpose of evaluation is not merely to comply with funding guidelines or to lend an air of legitimacy to a research and development effort. Rather, the goal is improvement" (pp. 4-5). Evaluations are meant to improve services, teaching, and counseling. Evaluations assess what is working and what is not working so that reasonable accommodations can be implemented to make things better. The SEDL report said, "Research aims to produce knowledge and truth and useful evaluation supports actions" (p. 5). The Reciprocal Nature of Research Researchers must act in a reciprocal fashion and not take advantage of the people they study. For example, someone being studied has a right to know why he or she is being studied. There has to be some reciprocal behavior involved between the researcher and study participants. Something has to be given back to the participants or back to the community that helps provide data for the research. A significant part of being reciprocal is ensuring that there are appropriate participant accommodations so that people can participate effectively. Utilizing a participatory research model engenders the reciprocal process. When people who are going to be studied are part of the process, they are able to say, "Okay. If we proceed with this research project, I understand that these outcomes will benefit us. It will help us get jobs. It will help us get transportation. It will help us to better understand our community." One of the incentives for people to be involved in a study is letting them buy in, participate, and learn from the results. There is no guarantee that the results will be as expected in the hypothesis, but if people have buy-in, they tend to accept the findings. An example of reciprocity is the agreement by the large drug companies to pay people who participate in their new drug trials. In rehabilitation research, there usually is no money to pay participants. In rare cases however, there have been grants that allowed financial incentives for people who participated in the research. APA Publication Manual Researchers should become familiar with the Publication Manual of the American Psychological Association (2001), commonly referred to as the APA Manual. The fifth edition is out now; it contains more complete information on the documentation of online resources (websites, e-mail, chat rooms). The APA offers some assistance online, as well.  Topics for Future Research Graduate students at San Diego State University interested in research are routinely asked by one professor: "What is your passion? and When your career is over, what do you want people to remember about what you have contributed?" Answers to questions like these help set the research agenda. The researchers passion should be linked to needs in the rehabilitation field. Special education research questions that might be explored include the following: Why is there such a large percentage of public school students of color in special education settings? What does the future hold for these children? What predictions can be made about the futures of these children? What are some positive things that can be done to change the outcomes for children of color in special education? Research can help generate new strategies for educating students. There is an inexhaustible list of topics for rehabilitation research. Research related to underserved consumers will continue to be fertile soil for strategic investigation far into the new millennium. Potential VR research questions include the following: Who are people of color who have disabilities? What works well in vocational rehabilitation? What does not work? If it is not working, what can be done to correct it midstream rather than at the end of the deadline? What can work better in terms of dealing with people, supporting people, and partnering with people? The data collected on people with disabilities by the Social Security Administration gives researchers part of the picture. The National Institute on Disability Rehabilitation Research, Rehabilitation Services Administration, and the Indian Health Service collect data on disability, but there isnt one clearinghouse containing information on how disability is defined in this country. Research involving people in the South Pacific Islands revealed the need to be sensitive to peoples culture and how disability is defined in that culture. If the word "disability" doesn't work in a certain culture, another word can be used to communicate the same concern. For research purposes, an important issue is how to find those people who have disabilities but who don't label themselves as such, because they are being cared for by their families. They may view their disabilities as a natural part of who they are in this world. Research questions that address what happens in the process of vocational rehabilitation for Native Americans are important to consider: What are some culturally appropriate intervention strategies? What is the role and impact of ceremony, religion, or spirituality for Native Americans in the VR process? The field of rehabilitation is just now starting to introduce the concept of spirituality into counseling. It has always been there, but now it is formally recognized. A section on spirituality appeared for the first time in Gerald Coreys textbook, Theory and Practice of Counseling and Psychotherapy (2002). Are there differences between how men and women deal with their disabilities? The answer would be very instructive in the organization of VR services. Donna E. Shalala, Secretary of Health and Human Services during the Clinton administration, talked about ensuring that women were part of the trials for medications that were being explored. Women were not part of the trials for many of the medications in use today. The biological differences between men and women might have tremendous implications for medications in terms of effectiveness. Heart disease is one of the leading causes of death for post-menopausal women. Why? Is it happening disproportionately to women of a certain age group? What about cancer research? Women of color with breast cancer tend to be diagnosed later and die sooner than Caucasian women. Why is this occurring? Is this trend occurring in certain communities? What are some proactive steps that can be taken to prevent it? If doing the actual research is not a passion for some individuals, they can advocate for research that is meaningful, that is going to add to solutions, that is going to move the rehabilitation field forward. As the new and continuing vistas of rehabilitation research build on the findings of the past, they need to encompass emerging disabilities, implications of a highly dynamic workforce, and involve consumers at every juncture. The interfaces of technology, underserved populations, and the workforce will challenge all systems and individuals to broach innovative approaches that require cooperation, inclusion, and diversity of methods. Rehabilitation research involving American Indian and Alaska Natives in the future will require researchers to embrace important elements of the human condition such as culture, ceremony, rituals, gender, and lifestyles. The Mission to Write and Publish Everyone in rehabilitation should adopt the mission to write and publish. Journals can be flooded with articles on issues that are important to people of color with disabilities. The rehabilitation journals are doing a little better job today accepting diversity-related articles for publication. They went on a hiatus of not accepting articles on diversity issues because they felt the subject had been written about enough. There are many more wonderful experiences that need to be shared. Professional journals are not the only place for written work to be published. Anyone can start a printed newsletter, a chat group on the internet, or an online bulletin board. Discussion Dr. Atkins: How many of you have conducted research and what did you learn? Participant: I would like to address reciprocity in terms of my research project. One of our participants was Deaf and of the Din (Navajo) people. I bought her a teletypewriter (TTY) machine used by the Deaf to communicate. She was happy because the machine allowed her to use the telephone. Dr. Atkins: That was an excellent example of a reciprocal piece in a research project and an excellent example of long-term impact. By long-term impact, I am referring to something that can continue for a period of time after the research study is over. You want your outcomes to have longevity, to have impact on a long-term basis. Dr. Atkins: I have a number of other questions for reflection. How many of you have published something about your work? Why is the protection of human subjects so essential? What do you consider to be the top five research needs at your home site? What do you consider to be the top five evaluation needs at your home site? I want you to remember that if you are not a researcher, you can learn to become one, if that is a desire. If it's not a desire, you can help generate research questions. You can be a participant. You can be an advocate. You can recruit individuals to be a part of the research and evaluation process. There are many roles that you can play in order to be a part of the research process. Participant: From my experience in doing research recently, it is critical to focus on ethics. As I conducted an interview, I found out that the Native American participant who was Deaf did not want to be videotaped. Most Native Americans do not like to be filmed. The person also did not want me to take notes as I was doing the interview. I decided to use narratives. I had to use stories, because I couldn't write anything during the interview. This person was using American Sign Language and Din Sign Language. I had to memorize what this person told me, the narrative message, and then run home or to the motel, and type it up as fast as I could to get all the information down. Audio taping someone who is Deaf doesn't work because his or her voice usually is not used. It is really difficult to interview people who are Deaf. Dr. Atkins: That is a very good point. We use a method in rehabilitation counseling called writing transcripts, where the counselor is required to write down, as closely as they possibly can, what happened in the counseling session. The Commitment Dr. Atkins offered these concluding remarks: I want all of you here to make a commitment to write something that gets published, whether its a journal article, a book review, an article for a newspaper or newsletter, or a book outline. Pick up that book that you want to write. Write a research proposal, a grant proposal, a poem, or a journal entry. Start a journal if you think no one wants to read what you have to say. It doesn't matter how long it is, just get in the habit of writing. By getting in the habit of writing, before you know it, you will have many publications that are worthwhile. We need your voice. We need the perspective of individuals who have insight into disability and what it feels like to be a person of color. Without your voice, the message gets lost, and then other people have to come along and restart the process. I want to leave you with a quotation from Dr. Nelson Mandela's inaugural address, given May 10, 1994. Dr. Mandela said, Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure, and as we let our own light shine, we unconsciously give other people permission to do the same. As we are liberated from our own fear, our presence automatically liberates others. References American Psychological Association. (2001). Publication manual of the American Psychological Association (5th edition). Washington, DC: APA. Ary, D., Jacobs, L. C., & Razavieh, A. (1996). The scientific approach in education. In C.P. Klein, J. Weaver, T. Napper, & C. J. Dierker (Eds.), Introduction to research in education (5th ed., pp. 19-23). Fort Worth, TX: Harcourt Brace College Publishers. Corey, G. (2002). Theory and practice of counseling and psychotherapy. Belmont, CA: Wadsworth/Thompson Learning. Mississippi State University Libraries. (2002, December). Conquering empirical research, question 1: What is empirical research? Retrieved from http://nt.library.msstate .edu/litutorial/empirical/index.asp#one San Diego State University. (2002, April). Graduate and Research Affairs, Institutional Review Board, Introduction, paragraph 2). Retrieved December 10, 2002 from http://gra.sdsu.edu/cphs/irbgeneralinfo.htm Southwest Educational Development Laboratory. (2001). Utilization measurement: Focusing on the U in D & U. Austin, TX: National Center for the Dissemination of Disability Research. 2  STORIES OF HELP AND HOPE: AMERICAN INDIANS AND ALASKA NATIVES WITH FETAL ALCOHOL SYNDROME AND RELATED CONDITIONS Presenter: Robert M. Schacht, Ph.D. American Indian Rehabilitation Research and Training Center (AIRRTC), Institute for Human Development, Northern Arizona University Fetal alcohol syndrome (FAS) is a pattern of physical growth and central nervous system abnormalities that is present in individuals who are exposed to alcohol before birth. Fetal alcohol syndrome is the leading cause of mental retardation. Every year about five out of every 1,000 babies are diagnosed with alcohol-related birth defects. There is likely to be a much higher rate of FAS than the diagnoses reflect because there are very few specialists who can identify the syndrome. Thus, the people who have FAS fetal alcohol syndrome often don't get diagnosed. Some of the highest rates of fetal alcohol syndrome are in a few American Indian communities. This is not to be viewed as a stereotype of American Indians because there are other American Indian communities that have more or less normal rates. The rate of FAS varies from one American Indian community to another. In American Indian communities, there tends to be a much higher level of awareness about FAS than in the mainstream population, even though there are more people in the mainstream population in total who are affected. Fetal Alcohol Syndrome and Related Conditions Characteristics The effects of fetal alcohol syndrome include physical characteristics, growth retardation, and abnormalities of the central nervous system. A small head circumference is often accompanied by facial characteristics that include things like small eyes that are widely spaced, a thin upper lip, and a flattened vertical groove between the nose and upper lip. The best time to diagnose FAS is when children are between the ages of 2 and 12. An early diagnosis can be done in person or with childhood photographs. Childhood photographs of a child without any facial expression are best, because smiling, frowning and various facial expressions tend to obscure the extent to which the upper lip is thin, which is one of the diagnostic traits. Central nervous system developmental abnormalities reveal themselves in learning characteristics and behavioral characteristics. Typical learning characteristics include intellectual functioning ranging from low average intelligence to mental retardation. An intelligence quotient (IQ) measure is not necessarily a very reliable indicator because IQs of people with FAS can be as high as 124. Significant learning problems in reading and math, poor cause-and-effect thinking, and delays in speech and language are other common manifestations. Some of the typical behavioral characteristics are hyperactivity and attention deficit disorder (ADD), disruptive or acting-out behavior, poor social skills and problems with peer relations, difficulty making appropriate judgments, and mood disorders such as depression and anxiety. Although these are typical, not all of these are signs of fetal alcohol syndrome. There is some debate in the field about whether attention deficit disorder with fetal alcohol syndrome is the same as attention deficit disorder without fetal alcohol syndrome. Some research shows that they're actually different in important ways. The research has shown that some of these learning and behavioral characteristics are secondary to the experience of living with fetal alcohol syndrome. People with FAS can experience depression, anxiety, and other secondary conditions that crop up not as a direct result of their having FAS but as a result of their living the life of someone in a handicapping environment. For people with FAS, a handicapping environment is one where people do not understand FAS, have inappropriate expectations for individuals with FAS, and where those with FAS don't get their needs met as people with disabilities. Alcohol-Related Neurodevelopmental Disorders There are conditions similar to fetal alcohol syndrome called alcohol-related neurodevelopmental disorders (ARND). This is what used to be called fetal alcohol effects, or FAE. Although FAE was never meant to be a diagnosis, many people used it that way even though there was not a very good clinical definition for it. Alcohol-related neurodevelopmental disorder is like fetal alcohol syndrome except that people with ARND lack some or all of the facial features that are characteristic of those with FAS. An ARND diagnosis based on the absence of facial features does not mean that the brain has not been damaged, because although the face develops in a relatively short time at the beginning of pregnancy, the brain develops all the way through pregnancy. Alcohol consumption at any time during fetal growth can affect the brain. Sometimes you see in the literature that fetal alcohol effects or alcohol-related neurodevelopmental disorder is a lesser degree of FAS. It's not lesser in terms of brain damage. It's only lesser in terms of the fact that the facial features are different. Disability Classifications Prenatal alcohol exposure is the leading cause of mental retardation, but only 27% of people with FAS and only 9% of people with ARND have IQs below 70 (Streissguth, Barr, Kogan, & Bookstein, 1996). Most people with FAS have an IQ that falls above the range that would classify them as developmentally disabled. Therefore, services appropriate for them are often unavailable. People with milder degrees of alcohol effects are in the same boat, sometimes in a worse condition because they don't usually qualify for the support services that they need. It is simplistic to assume that people with normal IQ have normal brains, because IQ only measures some brain functions and not others. Learning disabilities are also often associated with prenatal alcohol exposure. According to the fourth edition of the Diagnostic and Statistical Manual (DSM-IV) (American Psychiatric Association, 1994),  by definition a person cant have both mental retardation and learning disabilities. However, there are several different ways of defining learning disability. If a person with FAS does not have mental retardation, he or she is very likely to have a learning disability. FAS Does Not Occur in a Vacuum Fetal alcohol syndrome is not only a diagnosis of an individual; it's a diagnosis for two people, because the mother has had enough of a problem with alcohol that it has affected her baby. But it does not stop here. Often it's a diagnosis of a problem in the family or community. Dr. Joe Stone, an enrolled member of the Blackfeet tribe of Northern Montana, speaks of seven generations of abuse to American Indians in his discussion of the postcolonial stress disorder theory (Stone, 2002). Dr. Stone describes a series of events experienced by American Indians over the last seven generations (175 years), including acts of oppression, racism, and warfare, that have led to a host of serious behavioral health patterns being passed from generation to generation. The network of interrelated things being discussed here stems from subjugation and abuse by an imperial power, alcohol and other drug abuse, leading to what can be called "disculturation," which refers to what happens when a culture doesnt function in a normal way for a variety of reasons. Posttraumatic stress disorder (PTSD) and depression are increasingly being recognized as unusually common in communities of discultured individuals. There is a very interesting book about depression called History, Identity, and Depression in an American Indian Community, by Theresa ONell (1996). The book is about the Flathead Reservation in Montana. In some communities, depression is so common that people who do not have depression are in the minority. Most people tend to think of depression as abnormal, but in some communities, being depressed is the norm. Another interesting dimension is that an American Indian's ideas about depression in some of those communities can be different from mainstream societys conception of depression. The sentiment in mainstream society is that depression is a problem that has to be fixed. In some American Indian communities, the attitude seems to be that depression is an indicator of a mature attitude, and that a real American Indian ought to feel depressed. This puts a whole different slant on things because it doesn't necessarily mean that depression is something that needs to be curedunless one can also fix the system that caused the depression, and also heal the intergenerational trauma. When these attitudes are considered in terms of a corrupted system the following question emerges: What sense does it make to cure a person who's depressed when the system around them is broken? Fixing the person is not paying attention to the real cause: disruption of the community itself and the traditional ways of life. An environment in which depression is common, and might be expected in adults, forms the backdrop for the communities that have higher than normal rates of fetal alcohol syndrome. The point is that FAS does not occur in a vacuum. Part of the legacy of seven generations of abuse is depicted in Michael Dorris's famous book, The Broken Cord. That book was published in 1989, only 13 years ago. Before it came out, and before the TV movie came out that was based on it, there were only a small number of specialists who knew anything about FAS. It was only 13 years ago, then, that people really started becoming aware of what fetal alcohol syndrome was and the problems that could arise from it. It was wonderful that Dorris' book raised awareness about FAS to the extent that it did, but for a long time it also had a depressing effect on the world of people affected by FAS because everybody started assuming that there was no hope. The book concluded that if you had FAS, that was itthat there was nothing anyone could do about it. A great amount of pessimism took hold in the service professions. Part of the reason for that belief is the literal truth that fetal alcohol syndrome cannot be cured, that the damage done to the brain by the alcohol can not be undone. A lot of what Ann Streissguth called secondary disabilities for people with fetal alcohol syndrome stem from things that happen when a person with FAS grows up in an environment where people have inappropriate expectations and dont understand why those with FAS are doing what they're doing. There are not as many of these secondary disabilities in individuals raised in a different environment that's not so handicapping to them. Native communities have fought back against the complex of issues that form the seven generations of abuse. Some positive things have developed in American Indian communities to combat the effects of this tragedy. A Seneca religious leader named Handsome Lake started a revitalization movement around 1800. The Native American Church was formed out of older traditions and incorporated in 1918; abstinence from alcohol was an important tenet of this church. The Shuswap Indians of Alkali Lake was a community in which almost all of the members were abusing and dependent on alcohol. One day, someone in an Alcoholics Anonymous meeting decided it was time to do something about it, and began a renewal movement that transformed the whole community, which achieved 100 percent abstinence over the course of 10 years. A tribal program called Blue Bay (Gale, 1988; Fleming, 1994) deals with alcoholism in original and Native ways on the Flathead Reservation in Montana. Another important example is Nanizhoozhi Center in Gallup, NM (http://www.cnetco.com/~nci/). There are things happening in Indian country to deal with the complex issues relating to alcoholism in ways that go further than treating the individual, but are trying to address the larger context of contributing factors. Case Studies There are several stories that paint a different picture than the bleak estimate given by Dorris in The Broken Cord. Here are stories about two American Indians and a Canadian Native who offer hope for a much more positive outcome under the right conditions. John Kellerman A series of six newspaper articles about John Kellerman, who has FAS, appeared in the Tucson Citizen (Fimbres, 1997). Johns mother, a great advocate for people with fetal alcohol syndrome, has one of the best websites on FAS anywhere on the Web (see the FAS Community Resource Center website at http://www.come-over.to/FAS/). Several of the pages on her website talk about John's growth, development, and current situation. These are some of the resources on which this presentation about John is based. John's birth mother was Lakota, from the Rosebud reservation. She drank heavily during pregnancy and gave birth while intoxicated. They say that when John was born, all of a sudden the room reeked of alcohol. John was diagnosed with FAS at birth, and when his birth mother found out about FAS, she didn't want John. That is a tragedy in itself. John was premature at birth. He only weighed two and half pounds. He had heart defects and had to have a heart operation when he was an infant. He had vision problems and growth retardation. Today, as an adult, John is 4 feet 10 inches. Johns eyes look widely set; in actuality, his eyes are in the normal places, but theyre small, and so it looks as if there is more space between them. His upper lip is smoother than usual and a bit thin. Teresa Kellerman, a foster mother, adopted John. Teresa and her husband had experience caring for children with special needs. Johnny was adopted more than 20 years ago, when hardly anyone knew anything about fetal alcohol syndrome. It didn't take Teresa long to find out that her new baby had very special needs. Baby Johnny couldn't handle much simultaneous stimulation. Sensory problems are very common to babies with FAS. They're easily over-stimulated because their brains aren't able to process information normally. Fast forward through John's childhood to adolescence and adulthood. John's mother found out that he needed a lot of advocacy with teachers who did not understand fetal alcohol syndrome. Teresa realized that she had become an expert in FAS through her own research efforts in order to advocate appropriately with Johns teachers and other professionals in the helping field. John attended a special education school where he received job training and learned personal living skills. Personal living skills are really important for someone with FAS, often more important than the academic skills that usually get more emphasis. John also qualified for vocational rehabilitation (VR) services through the transitional plan that was mandated to be a part of his individualized education plan (IEP) is developed by the school special education teacher/director and a team of people help develop it include occupational therapist, physical therapist, speech therapist, special education teacher, regular teacher and VR counselor while he was in school. That was very important, and was one of the key ingredients for John's present-day success. In terms of his academics, John had a borderline IQ, just low enough to qualify him for developmental disability services. He has poor memory. He has difficulty mastering basic skills and managing money. As a young adult, he's functioning at the fourth grade level academically and at age 6 or 7 emotionally. He needs medication to function and he needs to be in a structured environment in order to succeed. John's mother helps him shave because he lacks the concentration to shave himself. As a child, Johns emotions were uncontrollable. His mother didn't really want to medicate him, but it turned out that medication was very important for him to be able to learn and function more effectively. The doctors put him on Ritalin when he was about 10 years old, and his mother says it was as if he sobered up. When his Ritalin wore off, he acted as if he were drunk. Since then he's been on a series of other medications, but he still takes the stimulant SSRI (Selective Serotonin Reuptake Inhibitors), a combination medicine that seems to work well for many people who have FAS. He's now on Adderall instead of Ritalin. He seems competent and in control when he's on medication. Johns condition may present a bleak picture, but there are successes to report in his case. John Kellerman graduated from high school, although it took him an extra three years. His level of functioning is still relatively low. The Arizona Rehabilitation Services Administration (RSA) helped John get a job at the Desert Survivors Plant Nursery. Johns case qualifies him for employment support services (ESS), the term used in Arizona to refer to extended services provided to an individual with significant disabilities. In Arizona, a cooperative agreement between Arizona Rehabilitation Services Administration and the Division of Developmental Disabilities gives consumers a broad base of services. A job coach or employment specialist and other support services can be provided to John as long as he needs the services to maintain his employment. For his job at the plant nursery, VR started John out with a job coach, and this has been a really important element of his success. The job coaches offer encouragement to John when he exhibits cooperation and proper social behavior. Initially, the job coach was provided as a vocational rehabilitation service from RSA. The high turnover of job coaches working with John has not been a negative influence, largely because those who have worked with him have been so caring and inspirational; these good attitudes have been another factor in John's success. John's mother said, "I think it's working well because the job coaches really enjoy their work and are committed to helping the employees succeed. They really like helping John learn his job skills and watching him succeed." John is motivated to work. He likes using tools in his gardening and yard work. He only works about four hours a day, another ingredient of his success. Arizona uses a lsystem of levels to rate an individuals work setting. Table 1 shows the levels graduating from Level 1: Sheltered Employment to Level 4: Supported Employment that pays at least minimum wage. Table 1 Arizona Employment Support Services LevelsLevel 1Sheltered EmploymentLevel 2Work Adjustment, Sheltered EmploymentLevel 3Work Adjustment, Supported EmploymentLevel 4Work Adjustment, Supported Employment, pays at least minimum wage In technical terminology, John is in a semi-integrated Level 3 setting with supported employment. John is at Level 3 because he's in an integrated setting; the public does come into Johns setting in order to buy things, but his responsibilities dont include dealing with the public. One area that is often problematic for people with FAS is inappropriate sexual behavior. Adoptive parents have to make sure their children don't get themselves into bad situations because of impulsivity and bad judgment. Despite his four feet ten inch stature, John Kellerman is a boy in a man's body. When John Kellerman met Sheena, who was also diagnosed with fetal alcohol syndrome, the two fell in love. Sheenas mother, like Teresa Kellerman, is a woman who knows a lot about kids with FAS. In a closely supervised way, John and Sheena are having a long-distance relationship because John lives in Arizona and Sheena lives in California. They don't have opportunities to meet very often but call each other on the telephone. Their parents are both amazed because they didn't think anything like this would ever happen in a way that seems so positive. Teresa was thinking that John would have to live at home for the rest of his life because he'd never be able to be on his own. This special relationship with Sheena is beginning to change her way of thinking. Both of the mothers are now thinking, Well, maybe these kids really can get married, live together, and have a successful relationship. In the world of people with fetal alcohol syndrome, that's a rare circumstance. There are very few happy endings to talk about. It's delightful to be able to talk about a relationship that's working out! Melissa Clark This is the story of Melissa (Lissie), which started 11 years before Michael Dorris' book came out. Melissa was born prematurely in 1976 with congenital heart disease, microcephaly (small head), and failure to thrive. Melissa was diagnosed in 1978 with what the hospital called fetal maternal syndrome. They certainly meant fetal alcohol syndrome, but they weren't used to the terminology at that time. She was one of the first people diagnosed with FAS in Montana. Melissa was placed in foster care when she was seven months old. She was in many other foster care placements over the next five years because the placements just didnt work out very well. Finally, at the age of six, she was placed in foster care with a retired schoolteacher named Johnelle. Melissa had been described to Johnelle as uneducable. Well, since Johnelle had been a schoolteacher, she took the opportunity as a challenge. Johnelles attitude was, "What do you mean uneducable? I am a schoolteacher, I can educate this child." Melissa had also been diagnosed with a severe vision impairment at the time Johnelle became her foster mother. Melissa was legally blind. She also had speech delay and symptoms similar to attention deficit hyperactivity disorder (ADHD). Fast forward over the childhood years to when Melissa was a teenager, when Melissa and Johnelle met Marilyn Kind, a client services respite coordinator for a developmental disabilities contractor named Quality Life Concept. Marilyn knew about FAS. This was not too long after Michael Dorris' book had come out. When they met, Johnelle and Melissa were among 114 clients on Marilyns respite caseload. Marilyn was able to provide Johnelle with resource materials on FAS that helped Johnelle and Melissa process the kinds of difficulties they had been having. Soon, Johnelle and Marilyn wanted to establish a non-profit corporation to assist people with FAS. Unfortunately, the organization never got off the ground. In the mid 1990s, Johnelle and Marilyn found out that Lissie worked easily with dogs. Marilyn had a dog-walking service. On their own initiative, Marilyn and Lissie started giving treats to the dogs they walked. The owners of the dogs saw that the dogs liked the treats, which were really gourmet dog biscuits, and began asking for them,. People became so interested in those gourmet dog biscuits that Johnelle, Marilyn, and Lissie started making and selling them under the brand name Lissie's Love Yums. They have a mail order business now, working out of their home. They got started with a grant from the Rural Institute on Disabilities and the Montana Job Training Partnership. At a conference in 2001 in Fort Belknap, Montana, Lissie showed the audience the Love Yums and other products, and how they made and packaged them. The dog treats are made with all natural ingredients, including Montana's golden wheat. They grind their own soybeans and wheat berries. They have cute stories about dogs that love their treats. Several newspapers in Montana have carried stories about Melissa and her successful business (e.g., Great Falls Tribe, March 15, 1999). Information from those newspaper articles helped form the basis for this part of the presentation. For more information, see the American Indian Rehabilitation Research and Training Center web page: www.nau.edu/ihd/airrtc/R_54/Melissa.html. At the end of her sales presentation at the conference in Fort Belknap, Melissa got out her violin and played "Edelweiss," a piece containing the theme "bless my homeland forever." Melissa was making a statement about her ancestral home, which resonated with her audience. The Gros Ventre people held a round dance in her honor that evening. She's an enrolled member of the Assinboine tribe. She was given a sacred shawl and an Assinboine name. She was welcomed back to her tribe in a very heartwarming way. A few elements of success in Lissie's case can be identified. Johnelle and Marilyn acted like job coaches. They're not officially job coaches according to the service system, but that is the function they performed. Melissas business was built on her interests and abilities. It was supported initially by Developmental Disabilities Services and grants. Melissa has a flexible but structured schedule and works in a controlled environment. Cindy Gere The third story is about Cindy Gere. Her story has been published in the first two Fantastic Antone books which contain stories of children with fetal alcohol syndrome (Kleinfeld, & Wescott, 1993; Kleinfeld, 2000). Cindy was born in the town of White Horse, Yukon Territory, Canada, which is just across the border from Alaska. Her birth mother was from the Kaska Athabascan Nation. Cindy was placed with a foster family right after birth and then adopted by another family at age three. Cindys adopted family fell apart within a year, so she was briefly placed in another foster home before joining the Gere family in 1972 at the age of three and a half. This was 16 years before Michael Dorris wrote his book. Cindy had problems in infancy: hyperactivity, impulsivity, perseveration, frequent bedwetting, and difficulty with memory and language acquisition. She was diagnosed in 1977 with fetal alcohol syndrome and then rediagnosed later as someone with fetal alcohol affects or ARND because she did not have all of the facial features common to someone with FAS. Cindy excelled in creative activities in her early childhood. Soon after arriving in the Gere household, Cindy asked her mother to draw a horse on a piece of paper. Her mother said, "After I had sketched some unrecognizable beast, she would exclaim, No, Mom, a horse! and then proceed to draw one herself." Cindy was enrolled in a Montessori school and teachers at the school also noticed her creative abilities. Fast forward to her adolescent years. At age 14, her parents asked her what she wanted to do in her life. She came up with several things that they would not have guessed. She said, "I want voice lessons, I want karate lessons, and I want to join the Police Explorers," a group that she apparently had found out about from friends. Not only did Cindy do well in all three activities, but each one of them strengthened her self-esteem and helped her later in life. Sometimes, parents and care providers forget to give choices to people in their care. The attitudes of the parents and care providers are equally important for success. Cindy had many of the academic problems familiar to people with FAS, especially with math, due to her learning disabilities. Cindys childhood perseveration was transformed into tenacity. Where many other people would have given up on something, she persisted. Her success at the University of Alaska Fairbanks and at other colleges can partly be attributed to her perseverance. Cindy learned how to drive, which is a rarity for people with fetal alcohol syndrome. The Michigan Department of Rehabilitation found a very patient instructor who helped her learn how to drive. When someone with impulsivity and distractibility gets behind the wheel, there is not going to be immediate success in most cases, which is probably why many parents of children with FAS give up on the idea of their son or daughter ever driving. Cindy's mother was an English teacher. At one point, Cindy expressed an interest in writing, even though she had difficulty reading. Cindys parents found some instructors who were willing to accept creative spelling so that she was encouraged to use writing as a medium. That helped Cindy develop in a number of ways. Cindys parents always encouraged Cindy to have a positive American Indian identity. She got excited about the pow-wows in Ann Arbor, Michigan in 1989. She became obsessively interested with anything connected with Native American life. Cindy showed an interest in beadwork and attended more pow-wows. Then she wanted to know more about her birth family, so in 1990 she wrote to the Alaska Athabascan tribe in White Horse and asked for information about her birth family. The tribe sent her some information, a welcoming response, and some pictures of her relatives. It wasnt long before Cindy went up and visited her relatives. Apparently, the visit went very well. Cindys mother found out about the Institute of American Indian Arts in Santa Fe, New Mexico, and decided that Cindy would thrive there. She did well in school, although math and English were a tremendous struggle, and graduated from the two-year program. Soon thereafter, Cindy said that she wanted to go to Alaska to learn about her Kaska heritage. The University of Alaska Fairbanks was a thousand miles away. Her mother helped create a local support network for her and off to Alaska she went. At the university, Cindy was able to substitute study of her Kaska heritage for her foreign language requirement. She worked with a linguist in White Horse, interviewed elders, studied tribal photographs, visited fishing camps, and became familiar with the culture as a means of learning the languageand she did learn it. Cindy graduated from the University of Alaska Fairbanks. Some of the things that helped her to succeed were her mother's intervention, a creative curriculum that built on her strengths, the local support network that her mother helped establish, and her own tenacity and determination. She loves her traditional Indian name and has frequently articulated her desire to help her Athabascan people. Her student teaching was put on a videotape called Painting a Future: A Young Adult Succeeding with FAE (Kleinfeld, 1999/2001). There are common themes to all three of these stories. All these individuals with FAS were placed in foster homes . All were born before Michael Dorris wrote his book. At first, none of the parents knew anything about fetal alcohol syndrome. Each mother became a strong advocate. All three children received special education services. Their successes built on their interests. Developmental disability services and vocational rehabilitation services were important to all of them. Their heritage was viewed, portrayed, and received positively. Their individualized education plans (IEPs) were an important part of school-based services, and transition from school to work was very important. Discussion Participant: Is it typical for a baby diagnosed with FAS to bond in infancy? Dr. Schacht: Bonding in infancy is often a problem. Problems with bonding in infancy are compounded by multiple placements with different families. Sometimes, a child will have a reactive attachment disorder, in which the way a child relates to adults is disturbed and developmentally inappropriate. It is difficult to tell whether it's part of the FAS or whether it's part of their early infancy experience. Untangling those things has been a challenge for researchers. A manual on fetal alcohol syndrome to aid in vocational rehabilitation (LaDue, Schacht, Tanner-Halneson, & McGowan, 1999) is available from the American Indian Rehabilitation Research and Training Centers (AIRRTC) online catalog: Website: http://www.nau.edu/ihd/airrtc/catalog.html Participant: Do you have anything on behavioral strategies? Dr. Schacht: Yes, there is information on behavioral strategies in the manual. Participant: Are the statistics you gave for mental retardation, 27 percent FAS and 9 percent ARND, for the dominant culture or for American Indians? Dr. Schacht: Those figures come from studies that Ann Streissguth did on people with secondary disabilities (Streissguth Barr, Kogan, & Bookstein, 1996). She had more than 500 people in her dataset. I think about 25 percent of the 500 were American Indians. Of course, the measurement of IQ in American Indian communities is controversial because there seem to be some differences in the results of IQ tests for American Indians and other ethnic groups. People wonder whether that's really about intelligence or whether it's about culture or other things. A normal IQ score in American Indian and non-Indian communities may not be the same. Participant: Do you work a lot with American Indians when researching FAS? Dr. Schacht: Yes. The AIRRTC is a research and training center so I don't do direct services, but I've been working on projects with fetal alcohol syndrome for about six or seven years now. One of my great sources for information over those six years or so is an e-mail discussion group that's populated mainly by mothers of kids with FAS. Those mothers tell you a lot that's not in any of the books. Participant: Do you visit American Indian reservations? Dr. Schacht: Yes. I've done trainings on fetal alcohol syndrome at Fort Belknap, Montana, in Idaho on the Nez Perce Reservation, and in Minnesota on the Red Lake Reservation. I haven't had as much reservation contact as I would like. I would like to get some case studies of people who were born and raised on the reservation. I know of one important case, involving Shea Goodluck, a Navajo woman who was a frequent speaker at conferences in the late 1980s and early 1990s. She had several sons with FAS before she achieved sobriety. But I dont have the information about her children in story form. All three of these cases described today were cases of adoption, where people did reconnect with their heritage, but they grew up off the reservation. I'd like to compare the cases I have with those from a reservation context. Our data collection project involves a pretty substantial case history booklet. Fetal alcohol syndrome is not a disability category, at least in the old rehabilitation system. In the old days, the only way counselors were able to identify the FAS population was to look for learning disabilities, mental retardation, ADHD or other symptomatic identifiers. Within the new codes, the codes for cognitive impairment due to a congenital impairment are a fairly close match to FAS. Participant: Can you tell me more about people with FAS who live on reservations? Dr. Schacht: The best example would be Shea Goodlucks family. They lived on the Navajo Reservation. At one of our conferences, a Navajo woman was desperate for help with her young adult son, who had become too big and had too many behavioral problems for her to manage. At that time, she was not able to get any help from services based on the reservation. I've got one or two cases from Idaho that are reservation-based cases. I dont have any from Red Lake yet, but that's certainly an area with which I want to work. I've heard that one of the reservations with the highest rates of fetal alcohol syndrome is the Pine Ridge Sioux Reservation. Social workers who work in that area told me that they think about one quarter of the population has been prenatally affected by alcohol. I know that there are cases up there. I need to get more reservation-based case histories. Participant: You said that some recent research shows that there is a difference between a person with ADD and FAS and ADD without FAS. Can you speak to that at all? Dr. Schacht: Claire Coles is the one who's been involved in that research (Coles, Platzman, Raskind-Hood, Brown, Falek, & Smith, 1997); she's at Emory University in Atlanta. She is a psychiatrist by training, and has been working with FAS for a long time. Her research is not with American Indians, but primarily with Anglos and Blacks in the Atlanta area. The way she was able to make the distinction between FAS and ADD was by breaking down how ADHD manifests itself into very specific things. By looking at some of those specifics, she found differences between the FAS and the non-FAS population, all of whom had or were diagnosed with ADHD. The cause of ADHD is not very well known, so the specific brain mechanisms associated with it are not that well known. There has been some research that indicates a specific brain malfunction in a specific place. In contrast, after the brain of a baby in utero is exposed to alcohol, the brain is a bit like Swiss cheese: You don't know where the holes are going to be. It all depends on when and how much the mother drank during pregnancy. My impression is that sometimes alcohol hits the same places as the ADHD does, which makes them look alike, but sometimes it doesn't hit exactly the same places. There are a lot of similarities, but it's not exactly the same. Read articles by Claire D. Coles (2001) and her associates (Coles, Platzman, Raskind-Hood, Brown. Falek, & Smith, 1997) for clinical details. References American Psychiatric Association . (1994). Diagnostic and statistical manual of mental disorders (4th ed.). Washington, DC: Author. Coles, C.D. (2001). Fetal alcohol exposure and attention: Moving beyond ADHD. Alcohol Research and Health, 25 (3), 199-203. Coles, C. D., Platzman, K. A., Raskind-Hood, C. L., Brown, R. T., Falek, A., & Smith, I. E. (1997). A comparison of children affected by prenatal alcohol exposure and attention deficit, hyperactivity disorder. Alcoholism: Clinical and Experimental Research, 21 (1), 150-161. Dorris, M. (1989). The broken cord. New York: Harper & Row. FAS Community Resource Center. Retrieved March 10, 2003, from http://www.come-over.to/FASCRC/ Fimbres, G. (1997, December). Born on the bottle... Drunk for life. (Six part series). Tucson Citizen. Retrieved July 15, 2003, from http://treefort.org/~tjk/fas/ and http://tucsoncitizen .com/local/archive/fas/ Fleming, C. (1994). The Blue Bay Healing Center: Community development and healing as prevention. American Indian and Alaska Native Mental Health Research, Monograph Series, 4: 134-165. Gale, N. (1988). Blue Bay: A tribal approach to fighting alcohol and drug abuse. Our way of healing. Washington, DC: Arrow, Inc. Kleinfeld, J. (1999/2001). Painting a future: A young adult succeeding with FAE. VHS videotape. Fairbanks: University of Alaska Press. Kleinfeld, J. (Ed). (2000). Fantastic Antone grows up: Adolescents and adults with fetal alcohol syndrome. Fairbanks: University of Alaska Press. Kleinfeld, J., & Wescott, S. (Eds). (1993). Fantastic Antone succeeds! Experiences in educating children with fetal alcohol syndrome. Fairbanks: University of Alaska Press. LaDue, R. A., Schacht, R. M., Tanner-Halverson, P., & McGowan M. (1999). Fetal alcohol syndrome: A training manual to aid in vocational rehabilitation and other non-medical services. Flagstaff: Northern Arizona University, Institute for Human Development, Arizona University Center on Disabilities, American Indian Rehabilitation Research and Training Center. (Available from the American Indian Rehabilitation Research and Training Center, Institute for Human Development, Northern Arizona University, http://www.nau.edu/ihd/airrtc ONell, T. (1996). Disciplined hearts: History, identity, and depression in an American Indian community. Berkeley, CA: University of California Press. Stone, J. (2002). Focus on cultural issues in research: Developing and implementing Native American postcolonial participatory action research. In J. D. Davis, J. S. Erickson, S. R. Johnson, C. A. Marshall, P. Running Wolf, & R. L. Santiago (Eds.), Work Group on American Indian Research and Program Evaluation Methodology (AIRPEM), Symposium on Research and Evaluation Methodology: Lifespan Issues Related to American Indians/Alaska Natives with Disabilities. Flagstaff: Northern Arizona University, Institute for Human Development, Arizona University Center on Disabilities, American Indian Rehabilitation Research and Training Center. (Available from the American Indian Rehabilitation Research and Training Center, Institute for Human Development, Northern Arizona University, http://www.nau.edu/ihd/airrtc). Streissguth, A. P., Barr, H. M., Kogan, J., & Bookstein, F. L. (1996). Understanding the secondary disabilities in clients with fetal alcohol syndrome (FAS) and fetal alcohol effect (FAE): Final report. Seattle, WA: University of Washington School of Medicine, Department of Psychiatry Behavioral Sciences. 3  TUTUWUTSI: EMBRACING STORIES THROUGH COMMUNITY NEEDS ASSESSMENT Presenters: Lee R. Gaseoma, Ed.D., Capacity Building for American Indians Project, American Indian Rehabilitation Research and Training Center, Institute for Human Development, Northern Arizona University Winona Reid, Capacity Building for American Indians Project, American Indian Rehabilitation Research and Training Center, Institute for Human Development, Northern Arizona University Mark Samos, Mashantucket Pequot Tribal Nation "Tutuwutsi" is a Hopi word, which literally translates as "storytelling." In the Hopi culture, Tutuwutsi is conducted during the month of January. Hopi elders, who have a vast knowledge of Hopi traditions, clan migration stories, and actual Hopi events, tell stories in the evening with their family members, neighbors, and friends to communicate important values. Storytelling embraces the traditional oral culture of American Indians and Alaska Natives. The Capacity Building for American Indians Project (CBAIP) is a national project funded by the U.S. Department of Education, Office of Special Education and Rehabilitative Services, Rehabilitation Services Administration (RSA), with a mission to enhance the capacity and increase the participation of American Indians and Alaska Natives in competition for discretionary rehabilitation grants, contracts, and cooperative agreements under Titles I through VIII of the Rehabilitation Act of 1973, as amended, and to enhance their ability to carry out their grants. The CBAIP works with other RSA capacity building projects so that multiple insights, expertise, and understanding of the rehabilitation process in Indian Country can be shared with existing tribal vocational rehabilitation (VR) projects, other interested tribes, and related VR programs. Dr. Lee Gaseoma, CBAIP Coordinator, is a Hopi tribal member with a doctorate in educational leadership from Northern Arizona University. He has worked in the American Indian vocational rehabilitation field since 1991. Winona Reid, Instructional Specialist, Senior, is a member of the Navajo Nation with a bachelors degree in education from Northern Arizona University. Kip Kelly, research consultant to the CBAIP for the completion of community needs assessments, has a masters degree in public administration and is currently employed as a planning specialist with Northern Arizona Council of Governments. Community Needs Assessment for the Five American Indian Tribes in Connecticut The Mashantucket Pequot Tribal Nation (MPTN) decided to develop an RSA grant proposal that would fund a tribal VR program to serve all five American Indian tribes in Connecticut. As a rationale for the grant, the MPTN needed to conduct a community needs assessment that would identify the needs of American Indians with disabilities living in Connecticut. Mark Samos, administrative planner for Tribal Health Services, requested CBAIP technical assistance. Mark Samos has been the administrative planner for the Mashantucket Pequot for two years. He is working closely with Dr. Valerie Ellien to create the tribal VR grant proposal in response to the VR Service Projects for American Indians with Disabilities grant competition sponsored by RSA. Dr. Ellien will be the director of the project, if funded. She has a doctorate in rehabilitation counselor education from Michigan State University. Originally, Samos and Ellien planned to develop a questionnaire for the community needs assessment and then have CBAIP staff provide training to tribal members on how to administer it. However, the two grant -writers recalled a bad experience the Mashantucket Pequot tribe had with research people in the last few years. Researchers who gathered data from tribal members released some information that the tribe didn't want released. Samos and Ellien realized that a formal survey didnt fit the tribal culture and would not have allowed Mashantucket Pequot to meet their proposal preparation timelines. Therefore, they decided to collect data using focus group interviews. Focus Group Interviews Conducting focus groups as part of a community needs assessment (CNA) is one of the ways that the voices of American Indians with disabilities and their stories can be heard. The purpose of a community needs assessment, as it relates to people with disabilities, is to gather reliable and relevant information from various sources in order to determine needs and to develop programs that will respond to those needs. Focus group interviews occur when a chosen group of people is assembled to answer questions and provide input on a particular topic of interest to the researcher. Historically, the five tribes in Connecticut did not always get along. The focus groups formed for the CNA, facilitated by CBAIP staff, successfully brought people from the different tribes to the table to talk, eat, and laugh together. No one argued. It was an exciting time, but fears were still there. Samos andEllien had spent a year building trust with the tribal members of the various tribes in order for those who came to the focus groups to feel comfortable sharing their life stories. Gaseoma and Kelly, of CBAIP, were able to alleviate a lot of fear in the people who attended the focus groups by explaining the purpose of the focus group interviews. Participant questions were answered before anyone completed consent forms, personal demographic forms, or voiced an opinion in the tape recorded interviews. Presentation Objectives At the end of this presentation, each person present will (1) understand the purpose, definition, and steps involved in completing a community needs assessment, (2) be familiar with some of the needs of American Indians with disabilities in Connecticut, (3) know how a community needs assessment can be beneficial, and (4) understand how community needs assessment information can be used to develop a tribal vocational rehabilitation program. . Steps to Conducting a Community Needs Assessment The eight steps involved in conducting a community needs assessment are: Use Participatory Action Research (PAR) model Define goals of the community needs assessment Investigate past research results Develop a specific action plan Gather data Manage data Analyze data Report findings Step One: Participatory Action Research In Step One, the use of the Participatory Action Research model means the CBAIP includes people from the local community (e.g., tribal members) in the design of the research study. The CBAIP provides time and resources to help the tribe define the purpose of the community needs assessment and provides on-site coordination of CNA activities, including the training of facilitators to be interviewers. Tribal members become part of the research team, an important part of PAR and the community needs assessment process. Step Two: Define Goals of CNA Step Two in the process is defining the goals of the CNA. What is the purpose of conducting the community needs assessment? How will data be gathered? What are the tribal protocols in going after data that will be a reflection of the tribal community? Is the tribal community ready to look at the findings? One of the fears associated with gathering data from community members is that results will be a reflection of the community, and it may bring forth issues that are uncomfortable, sensitive, and likely to stir controversy. The focus group participants should represent the individuals who will benefit from the community needs assessment. Those beneficiaries are individuals with disabilities, their family members, and significant others. Step Three: Investigate Past Research Results The next step in the process is investigation of previous research. There has to be some information out there already on the target population to be served by the proposed tribal VR project, which can be used as baseline data. Mark Samos needed to work with the tribes who would be participating in the tribal VR program to look for past data and information. Searching the literature and gathering previously collected data from organizations is done to shed some light on people with disabilities in the geographical area and help eliminate the lengthy process of gathering data that is not actually needed. Reviewing the literature can also elicit suggestions on how to conduct research effectively and efficiently. Most of the background data was gathered from the 2000 U.S. Census, which contained self-reported data. In the east, many tribal members are of mixed race. The category or categories that an American Indian reports to the U.S. Census-takers depends on how that person views himself or herself. The 2000 U.S. Census allowed individuals to check more than one race or ethnicity category. An Indian behavioral health specialist formerly employed by MPTN said, "I will never report that I'm an American Indian." When asked why, he replied, "It's another way that the government keeps track of me." That was his belief. Other people of American Indian heritage have similar beliefs. There is a tremendous amount of underreporting of American Indians and Alaska Natives because personal views of their own race/ethnicity, or political, religious, and societal factors, enter into their decision to check a race category other than Native American. Underreporting presented a struggle to Samos and Ellien in writing the Mashantucket Pequot tribal VR proposal. There werent statistics available. A newspaper article titled "The Black Indian" (McNamara, 2001) describes the difficulty that people of mixed African-American and Indian heritage have in reclaiming their American Indian culture and being counted and recognized as American Indians. Those are the identity struggles, the cultural struggles, that people have in the east. They not only struggle with American Indian culture and identity, they struggle with their other culture and identity, be it Black, White, or Hispanic. It was a very difficult process to bridge all those gaps and still have people come to the table and speak their mind in the focus groups. Step Four: Develop Specific Action Plan Step Four is the development of a specific action plan. A decision must be made about how the community needs assessment will gather data to build on what is already known. Data might be gathered on types of disability by sex or by age, services currently provided, services needed, or tribal infrastructure departments, personnel, and paperwork flow. Researchers need to develop a method of gathering data, a research protocol. There are two types of data: qualitative and quantitative, which work together to give a good picture of any situation being studied. Quantitative research uses data collection instruments designed to facilitate statistical analysis of the data collected. Qualitative research uses methods such as personal interviews, focus group interviews, and observations to collect data.  Step Five: Gather Data Step Five is to gather data. This is the implementation of Step Four. Researchers need to determine what research instrument should be used and what kind of sampling will be done. Probability and non-probability sampling are useful in different situations. Probability sampling is based on simple random sampling in which each person has an equal chance of being surveyed. The results are generalizable to the whole research population. Non-probability sampling involves individuals volunteering to be in the study or the researcher choosing a group of individuals. Results from non-probability sampling are not generalizable to the whole population. Research participant confidentiality must be ensured. This was the most difficult piece for the Mashantucket Pequot Tribal Nation. The issue of confidentiality raised everyone's concerns. Confidentiality meant different things to different people. The tribal council said, "Who is going to get this report? Where is it going to go? Who has control? Samos and Ellien were dealing with five tribes, each with its own tribal council. All focus group participants signed a consent form created by CBAIP staff and approved by Samos and Ellien.The final version of the form included a statement that the state service providers and state agencies would not receive a copy of the report or its data without the full approval of the participating tribes. The CBAIP developed a specific demographic form to record each participants age, residence, type of disability, and additional information that would lend support to the proposal on which MPTN was working. This form provided some quantitative data. Mashantucket Pequot tribal representatives had to decide how many focus groups they were going to do. The original request for two quickly grew to five as word spread and various groups asked to be involved. For example, the State of Connecticut Commissioners asked to be in a focus group late in the process. The approach MPTN took from the beginning was, Your voice is of value, your voice needs to be heard, and you need to be in the room. Five focus groups were held over the course of two days, to maximize the time that Lee Gaseoma and Mr. Kelly were available in Connecticut. In typical New England fashion, everything was coordinated in a fast-paced manner. Trays of food were served at each of the focus group sessions because a major part of American Indian culture is to serve food at gatherings. Each interview session was recorded, transcribed, and analyzed. The number of participants ranged from six to twelve. Table 2 lists the types of individuals invited to each of the five focus groups and the number of participants who attended. The stories these people told were very powerful, from the heart, and very honest. They talked about their dreams, their aspirations, their expectations, their senses of failure, both with themselves and the system. The Native Americans at the table expressed their fears, their concerns, and their anger with service providers who were sitting at the same table. The respect and honor that CBAIP staff brought to the table facilitated the outflow of participant stories. Four beliefs voiced by service providers were: (1) all Indians are wealthy; (2) if an Indian with a disability needed to be taken care of, one of the two federally recognized tribes in Table 2 Focus Group Participant TypesFocus GroupFocus Group Participant TypesNumber of Participants1Private, state, and tribal service providers; people with disabilities, their family members, and significant others122Connecticut State Commissioners, state department administrators83Schaghticoke tribal members only: tribal leaders; people with disabilities, their family members, and significant others114Tribal leaders or their representatives (five tribes)85People with disabilities, their family members, and significant others6 Connecticut, Mashantucket or Mohegan, would take care of that person; (3) American Indians cannot access disability-related services; and (4) American Indians living in Connecticut won't access disability-related services. The idea of American Indians not accessing disability-related services stems from a lack of personal transportation, the long distance to travel for services, the lack of awareness of available services, and fear of requesting help from state service providers. A mother provided an emotional testimony on behalf of her daughter. She shared with state VR service providers that they were, in a sense, denied services, because the service providers acted on the perception that Connecticut Indian tribal members were wealthy because of tribal casino revenues. In a response to her testimony, one of the service providers said, "Yes, that is my stereotypical attitude of the Connecticut Indians." Indian representatives who sat in the focus group interviews shared that they were discriminated against by the state agencies and by people in general who had this idea that they were all wealthy Indians. The state providers said that they didn't understand why American Indians were knocking on their doors for help. In the last focus group interview, a lady with a disability shared her concerns about the tribal government and the way the casino revenues were being handled. According to her, the perception that all the needs of tribal members are met because they are members of a wealthy gaming tribe is simply not true. In her words, Money is one thing, but support for our emotional needs is not there. In one focus group, a gentleman who is blind expressed that the one dream that he would like to fulfill before he dies is to obtain his high school diploma. He knows that he can achieve his diploma, something that other people say he can't do. Step Six: Manage Data Step Six is managing the data. This is the process by which CBAIP staff provides instructions and recommendations on how to manage the data. Decisions in this vein include what type of database to use, who will analyze the data, and who will prepare the report. Kip Kelly, part-time consultant for CBAIP, was hired specifically to meet these responsibilities. If the CBAIP, funded by the U.S. Department of Education, is asked to be involved in conducting a community needs assessment, then ownership of the data will rest with CBAIP. The documents and data gathered in the MPTN community needs assessment were kept secure at the CBAIP offices located at Northern Arizona University to ensure privacy and confidentiality. Step Seven: Analyze Data Step Seven is the analysis of the data. Researchers need to decide how the data will be analyzed. Data analysis can be a tedious process. Researchers should consider using computer software to help analyze the data. The CBAIP opted not to use computer software to help analyze the MPTN focus group data because there wasnt enough time or personnel to invest in learning a new software program and relying on it for results. A minimal amount of quantitative data from the demographic form was transferred into numbers and percentages. The primary emphasis for the Mashantucket Pequot was on the qualitative data emanating from the focus groups. Samos and Ellien attended all five of the focus groups in order to stay connected to the process and to take their own notes. They learned a tremendous amount about how individuals wanted the tribal VR program to be set up and what services should be provided. The CBAIP transcribed five focus group interviews verbatim. The transcribed text will be subjected to content analysis of common themes emerge from the different interviews in relation to the questions posed to the different focus groups. One of the things that focus group participants wanted was a full background check on all VR employees, something neither CBAIP nor Samos had considered. Future consumers wanted the same type of background check completed that would be completed on someone working with children. The background check requirement was included in the tribal VR proposal. Another outcome of holding focus groups with members from different tribes was the further unification of the tribes. For the first time, people with a lot of money and those with little money, those who have and those who have not, all had the same voice. Step Eight: Report Findings Step Eight is reporting findings. Kelly was hired specifically to analyze and report the findings, with input from Lee Gaseoma, CBAIP Coordinator, and Priscilla Sanderson, CBAIP Director. Interpretation of qualitative data is subjective. The researcher is typically very close to the research study: involved in developing the interview questions, selecting the focus group participants, analyzing the data, and writing or editing the report. The researcher's experiences, perspectives, and intended research outcomes will influence the content of the final product. The researchers writing style is also subjective. Samos and Ellien will edit the report before a copy is given to each of the five tribal councils. Each tribe was guaranteed a copy of the completed final report from Northern Arizona University. Mark plans to include the report in the grant proposal as an appendix. Conclusion There is a very clear need. One individual with a disability wants support from the proposed VR program to start his own greeting card business. A person who is blind from another tribe said, "I've worked with the state. I've not had success. Please help me." A man asked Samos questions on behalf of the mans sister who had just become blind because of diabetes. The man asked, "Who do I contact? What could this program do for my sister if you're funded?" Mark was able to give him state contacts for his immediate use. In conducting a CNA, tribes should recognize from the very start that there will be some disagreements because the work requires the interaction of human beings, with their different attitudes and their different interests. The research team needs to get past the disagreements and move on to each succeeding step. Quotations will be included where appropriate, so that the words of the participants are conveyed. Hopefully, the RSA peer reviewers of the Mashantucket Pequots VR grant proposal will sit down, look at it, and say, "Yes, this is coming from the communities." The hardships faced by tribal members with disabilities must be reflected accurately in the proposal. Individuals will not be mentioned by name in the proposal. The proposal must be prepared with reference to the selection criteria given by RSA. This is not the time for MPTN to fight the federal system. Tribes should play RSAs game. On the other hand, the CBAIP encourages each tribe to write its proposal the way that it makes sense to them, because they will be the ones to implement the actual proposal, and be responsible for accomplishing its stated goals and objectives. Discussion Participant: How many times does CBAIP visit the community when theyre invited to come and put together a community needs assessment? Dr. Gaseoma: We look at the timing in reference to the request for proposals. For example, the request for proposals for the tribal VR program has been coming out in December, with a due date six months later, some time in June. There are certain things that we can accomplish through e-mail and teleconferences. We give tribes the option to invite us onto their reservations. Depending on the nature of the community needs assessment, we can make one or two on-site visits. Participant: How long is the community needs assessment process? Dr. Gaseoma: The length of the process depends on the need of the tribe. If it's in reference to a VR proposal, a six-month grant-writing period can be expected. Ideally, the community needs assessment should be done a year before the grant writing begins. Mashantucket Pequot was an exception. On December 10th, the tribe made a formal request for help from CBAIP. On February 9th, Kip Kelly and I were in Mashantucket to help conduct the focus groups for the CNA. It was a very tight timeline. Mark Samos came up with a six-month timeline for completion of his Section 121 (American Indian Vocational Rehabilitation [AIVR]) proposal. The proposals are due in June 2002 of this year. Mark attended the CBAIP workshop in November 2001 in Flagstaff and attended a follow-up workshop in Dallas, Texas, in March 2002. Six months may seem like enough time to prepare a proposal, but if there are certain parties that need to be involved, like tribal councils, then tribes really need to start early. The Mashantucket Pequot started this process a year and a half ago. Participant: Could you gather quantitative and qualitative data when doing a CNA? Dr. Gaseoma: We can develop the research design to include both quantitative and qualitative data. With two other community needs assessments, we used the CNA tool designed by the American Indian Rehabilitation Research and Training Center, which is more quantitative in nature. But at the request of the Pequot Nation, we took a different direction and used focus group interviews, which is an accepted research method of gathering data. Participant: Where would existing data or information on people with disabilities be found? Dr. Gaseoma: We encourage the tribal grant writer or the tribal VR director to do a literature review and determine what information is already available, because we want to eliminate the process of gathering data that might already be available. But in most cases, the data that is already out there is not on the target population of interest, your tribe, and is not comprehensive. Existing disability data can be found at the Indian Health Service, the public school system, and state VR offices. Each organization gathers and manages its own data for its own purposes. State VR agencies might have data on the American Indian/Alaska Native cases shared with tribal VR programs. Participant: I want to commend the Capacity Building for American Indians Project. It seems like your customer in this instance is very satisfied with the strong culturally sensitive approach that they used to collect the data. The PAR process seems to be relevant in this particular instance. How are you going to determine disability types and distribution of disability by using the focus group process? Dr. Gaseoma: Through the needs assessment, we are going to be able to do types and distribution of disabilities across the five tribes. The data collected on the demographic forms recorded age, type of disability, whether the disability was primary or secondary, and residency. A summary sheet was prepared showing the numbers and percents of disability types found in the focus group participants by age, tribe, and other variables. Participant: Were the participants at the five focus groups assumed to be representative of the five tribes? Dr. Gaseoma: The selection of individuals to participate in the five focus groups is extremely important because they are assumed to be representative of the five tribes and contain a cross-section of disability types found in each tribe. The CBAIP provided recommendations to Mark Samos about what types of people should participate in the interviews and then he determined exactly who should be in the focus group interviews, which is part of the PAR process. We definitely needed to see individuals with disabilities, their family members, and significant others. Mark Samos knew of some people at the state service agencies and other key stakeholders who he felt should be a part of the focus group interviews. Mr. Samos: The tribal leaders focus group contained one person from each tribe who was either a tribal council member or in another leadership position. The more difficult group to put together was the people with disabilities, their family members, and significant others. I went to the social service agencies at each of the tribes and informed the administrators about the focus groups and the grant proposal. I said, "I need to have a group of people with disabilities that are representative of the types of disabilities found in the tribe. Each person must have had positive or negative experiences with their disability and services received, a desire to be employed, and be willing to tell their story. Upon reflection, I feel that the focus group participants could have contained a better cross-section of disabilities. Participant: How are you going to control for bias and achieve greater reliability, if there's only one person doing the analysis? Dr. Gaseoma: To reduce researcher bias in the preparation of the final report, Kip and I decided that we would share whether or not we pick up the same themes, the same concerns, when performing the content analysis of the interview transcripts. Participant: Were you able to ascertain any information from your Deaf population in Connecticut? Mr. Samos: There have been very few services provided to either the Deaf or the visually impaired American Indian population in Connecticut. In the last five years, the state has only served two visually impaired American Indians. Mr. Samos: CBAIPs customer-centered focus, in which the tribe is the customer, was phenomenal. I could not have arranged enough funds to pay for the level of support I received from CBAIP. I would not have gotten the insight into American Indian culture without the CBAIP program. They have respectfully asked me for permission every inch of the way, and included me in every inch of this process. This has been a great experience. References Borg, W. R. & Gall, M. D. (1989). Educational research: An introduction, (5th ed.). New York: Longman. McNamara, E. (2001). Black Indians learn to embrace 2 worlds. Retrieved January 31, 2001, from http://www.theday.com/ 4  WISDOM OF OUR COLLECTIVE EXPERIENCE IN CONDUCTING RESEARCH WITH AMERICAN INDIANS WHO HAVE DISABILITIES Presenters: Jamie D. Davis, Ph.D., Indian Health Service Jill Shepard Erickson, M.S.W., A.C.S.W., Substance Abuse and Mental Health Services Administration Walter H. Hillabrant, Ph.D., Support Services International Kelly Keemer, Indian Health Service Catherine A. Marshall, Ph.D., CRC, American Indian Rehabilitation Research and Training Center (AIRRTC, Institute for Human Development, Northern Arizona University Jennifer Olson, Ph.D., University of Idaho Paulette Running Wolf, Ph.D., ORC Macro  The Work Group on American Indian Research and Program Evaluation Methodology (AIRPEM) is an ad hoc group of people who do research and evaluation in Indian Country, some of whom represent three primary federal agencies that commission research and evaluation with tribes. We came together to share our common experiences, challenges, and opportunities. Historical Influences on Research in Indian Country Dr. Jamie Davis and Ms. Kelly Keemer The way we view individuals influences the way we conduct our research. The idea that the historical views of individuals influence research practices is an important concept, relevant to understanding the history of research in Indian Country. Many people have spoken about paternalism in the treatment of American Indian and Alaska Native communities. Historically, non-Native researchers, or non-sensitive researchers, have tended to categorize members of the 500-plus federally recognized tribes and all of the non-federally recognized tribes under the broad concept of Indian. We know there is great cultural and linguistic diversity in the different tribal peoples. With researchers, historians, U.S. Army soldiers, and other individuals who have come into Indian Country, we see a history of forced acculturation at its best, and annihilation at its worst. We know there are so many tribes that no longer exist because their tribal members are now extinct. In our historical research, we found some interesting article titles and concepts from the 1800s, such as Researches into the Sanitary Condition and Vital Statistics of Barbarians (Dowler, 1857), an article about American Indian and Alaskan Native children titled "Wild Babies (Elliott, 1878), the Carlisle Indian School motto, Kill the Indian, Save the Man (Styron, 1997) and this statement by George Grant: As the Indian has no chance of existence except by conforming to civilized ways, the sooner that the Government or the Christian people awake to the necessity of establishing schools among every tribe the better. Little can be done with the old, and it may be two, three or more generations before the old habits of a people are changed; but, by always taking hold of the young, the work can be done (Styron, 1997). The history of compulsory schooling and the establishment of federal and non-federal schools for the education of Indian children brought abuses to many of these schools. The abuses resulted in a longstanding history of trauma for these individuals and communities that has been passed down through generations. As a result of the Termination Acts of 1953 through 1962, many tribes lost their status as recognized tribes. This was a huge blow to our communities. It also affected researchers by undercutting the need for and validity of research in Indian Country. If we're no longer Indians, then supposedly we no longer need research to be conducted about our needs and about how history has impacted us and created some of the conditions that we experience now. The Nixon Administration passed the Indian Self-Determination and Education Assistance Act in 1975. There is an interesting story about why Nixon was interested in American Indians and Alaska Natives. His athletic coach and mentor during his formative years was an American Indian. Nixon felt an obligation to pay back his debt of gratitude by helping American Indians and Alaska Natives during his term of office. The fact that there was a successful Native role model for a non-Native person proved beneficial. The development of protections for human subjects and implementation of institutional review boards (IRBs) by the Indian Health Service (IHS) began the endeavor to protect individuals in the research process. We can call this a period of joining, but not true collaboration, because true collaboration would require the conduct of research with Natives. Here is an example of how people coming in from outside and conducting their research on behalf of American Indian and Alaskan Native people can have detrimental effects on Indigenous communities: A group did some studies in Alaska and released the research results to the press without tribal authorization. A local newspaper headline read, "Sudden Wealth Sparks Epidemic of Alcoholism: What We Have Here is a Society of Alcoholics" (Foulks, 1989, p.13). At this point, researchers were still not collaborating with Indian people and communities; they were still trying, in a somewhat paternalistic way, to conduct research for the betterment of Indian people. While not seeing them as barbarians, researchers did not see them as individuals capable of intelligent thought, able to conduct research, or become scientists. These perceptions of outsiders and resulting inappropriate behaviors affected the willingness of American Indians and Alaskan communities to participate in research. There was a period when many tribal communities took a hands off attitude in relation to research. We still see a lot of that today, because much research with paternalistic attitudes is still being conducted on Natives. Collaboration is the next step to consider. Participatory Research Despite the problems of the past, American Indians and Alaska Natives do realize the need for research and do help promote projects in their communities. Participatory research represents an active step in improving research so that the research benefits the communities studied. Simply stated, participatory research empowers people to become responsible for addressing the issues that affect their lives. It is important that researchers and communities share equally in each step of the process, from planning to disseminating results. In order to establish a positive relationship between communities and researchers, it is important that respect for the people, the culture, and the community is clearly spelled out in the research. Researchers are not expected to be experts on the more than 550 tribes in the United States, but they should learn as much as possible about the communities and tribes they are studying. Learning more about the history and culture of the tribes, as well as the local communitys customs and beliefs, will allow researchers to conduct more efficient studies that will benefit all parties involved. Codes of research ethics have been developed in many Native communities that provide guidelines for conducting participatory research. These policy statements discuss the obligations of all parties involved and call for development of a plan for data control and the dissemination of results. The ultimate decision on how results are to be used, including whether the results are published in scientific journals, resides with the community and the tribes themselves. The challenge is how to present negative results in positive ways that will help the community. Researchers need to show genuine concern for the communities with which they are working. By doing this, they can establish trusting relationships with the communities that will provide the best outcome for both groups. Future Directions for Research in Native Communities There are some best practices that we know about for conducting research in Native communities. Certainly, the various codes of ethics that have been developed have brought us quite far in conducting research with American Indian and Alaska Native communities. There is also the Native American Research Centers for Health (NARCH), a collaboration of several groups, including the Indian Health Service and National Institutes of Health (NIH), that provide money to tribes, tribal organizations, and urban programs, that collaborate with universities and other researchers to conduct research in Indian communities. What makes this program different from others is the fact that the principal investigator is the Native community, not a government entity, college, or university. There have been two grant award cycles through NARCH, for very large grants. Information is available at the IHS web site (www.ihs.gov). There is a variety of sources for help. It is really about developing multi-collaborative relationships. There are some other wonderful best practices that we are going to hear more about today. Catherine Marshall and the research done through the American Indian Rehabilitation Research and Training Center have really helped promote research in Indian Country in a collaborative, participatory, and culturally respectful manner. Then, of course, the wonderful grant programs and the evaluation components of the SAMHSA grants and some of the things that Jill Erickson has been doing. And there are many other examples of research by people here, like Paulette Running Wolf. Lots of people all over the country are doing things in Indian communities that are models, leading the waymostly Indian researchers or at least including Indian researchers, so we can increase the numbers of role models that exist for ourselves and for young people interested in research. We know that we need to continue research that is participatory and collaborative. Considering the future of research in the American Indian and Alaskan Native communities, there is so much we need to know and to think about. We need research about service utilization rates, how people use the services, how the services are benefiting and not benefiting them, and what things are working and what things are not working. We need research on how we can help people overcome the stigma of participating in research. We need to encourage tribal members, tribal programs, and tribal communities to be a part of the research, to take control of the research, so the community is taking the responsibility for making the decisions about the research, the data, and its use and publication. Also, research in many communities tends to focus on problems, not just research done in American Indian and Alaskan Native communities.Our people have great strengths and research focused on those strengths can take us further than research focused on problems. I encourage people to do more research on the strengths of American Indian and Alaska Native communities and individuals. Summary We can see a relationship between the historical treatment of American Indians and Alaska Natives and the research done on Native people and communitiesthat is, the movement from conducting research on individuals, to conducting it with them, and then to collaborating. The research and the history go hand in hand. We've come a long way and we have a lot further to go. Groups like AIRPEM can promote collaborative, culturally respectful research and support our communities in being responsive to that research. Research Issues in Indian County Dr. Walter Hillabrant Stakeholders are those who have an interest in a program, policy, or research. In the research arena, one stakeholder is the sponsor of the research. The federal government has been and continues to be the primary sponsor of research in America. But changes are going on in the research area, and one of them is a change in the sponsorship of research. More and more tribes, primarily through tribal organizations and consortia, such as the National Congress of American Indians, the National Indian Education Association, and the Consortia of Administrators for Native American Rehabilitation, are starting to influence and set the research agenda. Tribes have an ever-increasing influence as sponsors of research, not necessarily in terms of financial support, but in terms of setting the research priorities. Another distinction among stakeholders relates to the consumers of the research. This is where the rubber hits the road. Research is often repeated over and over again in different ways. Tribes and tribal organizations need to sit at the table as active consumers and figure out what they want and how they want it to be used. Then, of course, there are the participantsand Im not talking about just the people who are being subjected to the research as participants in it. Participation takes many forms, including tribes and tribal organizations participating in research. In terms of the nature of research, there are two major classifications: applied research and theoretical or basic research. Basic research is research that is conducted for fun. Part of our quest here as human beings is to figure out what is happening, how we got here, where we are going, how it works; that is what basic research does. Two examples of basic research questions might be, What are the molecular biological mechanisms of diabetes? and What are the genetic factors that contribute to substance abuse? In Indian Country, people get excited about genetic research. Genetic research with diabetes is seen as okay, but genetic research dealing with substance abuse tendencies is often greeted with horror in many tribal communities. In fact, some of the basic research that is going on in Indian Country is or should be some of the most controversial. All kinds of research is conducted on in Indian Country. There are clinical trials in health care areas, experimental, quasi-experimental, evaluation survey research, qualitative, and quantitative research. There is no reason that basic research can't be done in Indian Country; it tends not to be geared toward practical applications as applied research is, but it's worth thinking about. One of the research areas that is really interesting is sampling. The whole purpose of drawing a sample from a population is to get a smaller set of observations that are representative of that population. People often don't realize that a sample is better than a census. To count everything of something is really difficult. If you can take a sample and just count a smaller subset of that something, often you can produce more accurate data and better information. One time I was asked, How can you possibly generalize to every adult voter in the United States from a sample of just 1,500? I answered, The next time you go to the doctor, worried that you might be seriously ill, and they want to take a sample of your blood, you tell them, I don't want you to take a sample of my blood. I want to be sure. Take it all. A lot of consumers of research don't know much about Indian Country. A lot of them don't even think there are any Indians any more, and those who do know there are Indians often have misconceptions. Sponsors and consumers of research often want you to do a study that can be generalizable to all Indians. They have to be educated about the fact that there are over 550 federally recognized tribes, and that trying to draw some kind of a scientific sample from those 550 tribes will generally cost more time and money than most people are willing to put up. As a result, researchers have come to appreciate some of the political aspects that may underlie research. Another issue is increasing the level of tribal control over research. One of the historical mileposts is the 1975 Indian Self-Determination and Education Assistance Act, Public Law 93-638. The Act should be called the reawakening of Indian self-determination, because self-determination has always been there, just not recognized by federal, state, and other entities. This Act gave rise to the reawakening of Indian self-determination in research. Another manifestation of self-determination is the creation of institutional review boards (IRBs). They are mandated by federal regulations for virtually every federal department and agency that spends money. Whenever a research project requires that observations be taken on human participants, the project must be reviewed by the appropriate institutional review boards. A substantial amount of research involving human participants is not reviewed by an IRB. An institutional review board is supposed to consist of members of the lay public, as well as experts. In Indian Country, there are generally three levels of IRB review: federal, area or regional, and local or tribal. An important concern of IRBs is informed consent. The idea here is that research participants are informed about the risks and benefits of participating in the research, in a language that they can understand, so that they can decide whether or not they want to participate in it. It's hard to do, especially if you are studying something like the molecular biology of insulin processing, but that's what IRBs are charged with, to see that informed consent is achieved. Another major IRB concern is participant confidentiality, which is the assurance that no one who is participating in the research will be identifiable, that it will not be possible to associate an individuals name with the information that person provides. One way to increase tribal control is to require the research project to hire tribal staff personnel to work on the research. There are obvious benefits to having tribal staff people working on a research project: it contributes to the tribal economy, presents opportunities for tribal members to acquire skills, and tends to decrease the tendency of researchers to use inaccurate stereotypes and degrading metaphors when talking about the tribe or its members. However, there are costs associated with it, too. The airplane passenger phenomenon is the idea that you can have great candor with somebody you will never see again. When tribal members are involved in data collection, local community members may be reluctant to tell them things that they might easily tell outsiders. You have to demonstrate the costs and benefits of the research not only to the individuals participating, but also to the tribe. In almost all the research we do, we guarantee to the tribe that we are not going to identify them in the research project unless they want us to. We give them pre-publication review, and the opportunity to say that there are no strategic omissions or errors. Tribes are insisting on this protocol. Researchers should see it as a welcome opportunity to save them from mistakes. In relation to the approval process for federally sponsored research, it is important to be aware of the federal Office of Management and Budget (OMB). The Paperwork Reduction Act requires that all federally sponsored research, other than grants, involving more than nine participants must be reviewed and approved by the OMB. That process typically takes about a year. It costs a lot of time and money, and you have to plan for it, otherwise, you may be unable to complete your research. Among the ethical problems that we researchers encounter, a very important one has to do with cultural competence. You should have already heard about cultural competence in research. Researchers must have enough understanding of the communities they are working in to make meaningful inferences from the observations they make, including instruments of assessment. One aspect of cultural competence that is particularly important in Indian Country involves setting the foundation for consumers of the research who really don't know much about Indian Country. When publishing your research, you frequently need to address certain things that are commonly unknown. For example, most people dont know that American Indians didn't gain citizenship in the United States until 1924; or about the impact of the boarding school system on Indian children and communities; or about forced separation of children from their families; or that large numbers of individuals lack telephones in certain tribal communities. When you write up your research, part of your ethical responsibility with respect to cultural competence is to make sure that your audience knows some very fundamental things about American Indians and tribal communities that could influence the way they understand and interpret your findings. Cultural Competence in Research with Tribal Communities Dr. Paulette Running Wolf The Comprehensive Community Mental Health Services for Children and their Families Program is the largest children's mental health service initiative to date, with 67 grant communities across the U.S., including eight tribal communities. The program is funded by the Center for Mental Health Services (CMHS), currently at a level of $460 million. Jill Erickson is the primary project officer for all eight tribal grant communities. The focus is to develop systems of care with children with severe emotional disturbances and to evaluate those systems to see if they are being effective and if they impact change with families over time. The goals of the initiative are shaped by the needs and preferences of the child and family. Each family is fully involved in developing the system of care, which is developed through a multi-agency collaborative effort and grounded in a strong community base. The intent of the evaluation is to be responsive to the cultural context and characteristics of the population served. Evaluation is about improving. It is used to improve program services, whereas research is focused on increasing the knowledge base. A national evaluation is focused at the local level, to guide service delivery p