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CASE STUDIESIN TRIBAL DATACOLLECTIONAND USETerry Cross, MSW<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare AssociationKathleen Fox, PhD<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare AssociationJody Becker-Green, MSW<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare AssociationJaime Smith, BA<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare AssociationAngela A. A. Willeto, PhDNorthern Arizona UniversityFebruary 2004A report prepared for the Annie E. Casey Foundationby the <strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association


ACKNOWLEDGEMENTSThe <strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association (NICWA) would like to thank the Annie E. CaseyFoundation for their generous support <strong>in</strong> mak<strong>in</strong>g this research publication possible. In addition, wewould like to gratefully acknowledge staff from Feather River Behavioral Health Services, the NativeAmerican Youth Association, the Multnomah County Department of Justice, the Portl<strong>and</strong> Public SchoolsTitle IX <strong>Indian</strong> Education Project, the Native American Rehabilitation Association of the Northwest, Inc.,Passamaquoddy Tribe, <strong>Indian</strong> Township, St. Regis Mohawk Nation, <strong>and</strong> Poarch B<strong>and</strong> of Creek <strong>Indian</strong>sfor their participation <strong>in</strong> the <strong>case</strong> study <strong>in</strong>terviews <strong>and</strong> contributions to the f<strong>in</strong>al report. The <strong>collection</strong> <strong>and</strong><strong>use</strong> of <strong>data</strong> <strong>in</strong> <strong>tribal</strong> communities is a critical <strong>and</strong> emerg<strong>in</strong>g area. We are honored to present our f<strong>in</strong>d<strong>in</strong>gs<strong>and</strong> hope that this report will help <strong>tribal</strong> communities, policymakers, <strong>and</strong> fund<strong>in</strong>g agencies make<strong>in</strong>formed decisions about the steps needed to address a perceived lack of empirically-based knowledge<strong>in</strong> <strong>Indian</strong> Country.Any portions of this document may be reproduced with proper citation: Cross, T., Fox, K., Becker-Green, J., Smith, J., & Willeto, A. A. A. (2004). Case <strong>studies</strong> <strong>in</strong> <strong>tribal</strong> <strong>data</strong> <strong>collection</strong> <strong>and</strong> <strong>use</strong>. Portl<strong>and</strong>,OR: <strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association.Case Studies <strong>in</strong> Tribal Data Collection <strong>and</strong> Use<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association2


TABLE OF CONTENTSExecutive Summary 5Chapter 1. American <strong>Indian</strong>/Alaska Native Research <strong>and</strong> Data IssuesIntroduction 7Data Issues 7Data Collection <strong>and</strong> Analysis: Barriers <strong>and</strong> Issues <strong>in</strong> <strong>Indian</strong> Country 9Data Inaccuracy Problems <strong>and</strong> Challenges 10Historical Overview <strong>and</strong> a More Promis<strong>in</strong>g Research Model for <strong>Indian</strong> Country: 17The Community-Based Participatory Research ModelConclusions 25Chapter 2. Introduction to the Case Studies <strong>in</strong> Tribal Data Collection <strong>and</strong>Use ProjectIntroduction 28Purpose 29Methodology 29Process 31Case Selection 31Chapter 3. Feather River Behavioral Health ServicesCase Study Subject Profile 33Inclusion Rationale 33Interview Descriptions 33Documents Reviewed Description 34Results 34Themes 39Summary 40Chapter 4. Portl<strong>and</strong>, Oregon, Urban American <strong>Indian</strong>/Alaska Native CommunityCase Study Subject Profile 42Inclusion Rationale 43Interview Descriptions 43Documents Reviewed Description 43Results 44Themes 52Summary 53Chapter 5. Passamaquoddy Tribe, <strong>Indian</strong> TownshipCase Study Subject Profile 54Inclusion Rationale 54Interview Descriptions 54Case Studies <strong>in</strong> Tribal Data Collection <strong>and</strong> Use<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association3


Documents Reviewed Description 54Results 55Themes 57Summary 58Chapter 6. St. Regis Mohawk NationCase Study Subject Profile 59Inclusion Rationale 59Interview Descriptions 59Documents Reviewed Description 59Results 60Themes 64Summary 65Chapter 7. Poarch B<strong>and</strong> of Creek <strong>Indian</strong>sCase Study Subject Profile 66Inclusion Rationale 66Interview Descriptions 66Documents Reviewed Description 66Results 67Themes 70Summary 71Chapter 8. Summary of Cross-Site F<strong>in</strong>d<strong>in</strong>gs 72Chapter 9. Conclusions <strong>and</strong> RecommendationsConclusions 78Values 78Issues 78Recommendations 79References 81Appendix A. Research Topics <strong>and</strong> Questions 85Appendix B. Matrix of Cross-Site F<strong>in</strong>d<strong>in</strong>gs 88List of TablesTable 1. Data Acquisition Tools 15Table 2. Resources for Users of American <strong>Indian</strong>/Alaska Native Data 16Table 3. Matrix of F<strong>in</strong>d<strong>in</strong>gs 89Case Studies <strong>in</strong> Tribal Data Collection <strong>and</strong> Use<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association4


EXECUTIVE SUMMARYIntroductionThis report explores a significant emerg<strong>in</strong>g issue <strong>in</strong> American <strong>Indian</strong>/Alaska Native communities—how<strong>tribal</strong> communities collect <strong>and</strong> make <strong>use</strong> of <strong>data</strong> <strong>and</strong> how the <strong>collection</strong> <strong>and</strong> <strong>use</strong> of <strong>data</strong> has affected thewell-be<strong>in</strong>g of their children <strong>and</strong> youth. Although previous research has documented the tremendousneeds of American <strong>Indian</strong>/Alaska Native communities, it is essential to cont<strong>in</strong>ue search<strong>in</strong>g for specificfactors that contribute to the various needs <strong>and</strong> lack of resources. This report aims to <strong>in</strong>form the nationaldialogue on how the lack of current <strong>and</strong> reliable <strong>data</strong> on American <strong>Indian</strong>/Alaska Native children <strong>and</strong>youth cont<strong>in</strong>ues to threaten their well-be<strong>in</strong>g. It is a first step <strong>in</strong> underst<strong>and</strong><strong>in</strong>g <strong>and</strong> describ<strong>in</strong>g <strong>tribal</strong> <strong>data</strong><strong>collection</strong> <strong>and</strong> <strong>use</strong> <strong>and</strong> analyz<strong>in</strong>g <strong>and</strong> document<strong>in</strong>g the impact that <strong>in</strong>adequate <strong>data</strong> has on eachcommunity <strong>and</strong> American <strong>Indian</strong>/Alaska Native cultures as a whole. The goal of this research projectwas to explore <strong>and</strong> analyze the impact of the <strong>in</strong>adequate <strong>collection</strong> <strong>and</strong> <strong>use</strong> of <strong>data</strong> on American<strong>Indian</strong>/Alaska Native children. The two objectives under this goal were 1) to identify <strong>and</strong> study five <strong>case</strong>situations <strong>in</strong> which the lack of <strong>data</strong> negatively impacts American <strong>Indian</strong>/Alaska Native children, childservices policy, or fund<strong>in</strong>g <strong>and</strong> 2) to prepare <strong>and</strong> dissem<strong>in</strong>ate a report on document<strong>in</strong>g the negativeimpact of <strong>in</strong>adequate <strong>collection</strong> <strong>and</strong> <strong>use</strong> of <strong>data</strong>.The f<strong>in</strong>al report is presented <strong>in</strong> n<strong>in</strong>e chapters with support<strong>in</strong>g appendices. Chapter one is dedicated topromis<strong>in</strong>g practices <strong>and</strong> emerg<strong>in</strong>g capacities <strong>in</strong> the <strong>use</strong> of <strong>tribal</strong> <strong>data</strong> to positively <strong>in</strong>fluence public policy<strong>and</strong> fund<strong>in</strong>g <strong>and</strong> provides a roadmap for tribes seek<strong>in</strong>g to collect <strong>and</strong> <strong>use</strong> reliable <strong>data</strong>. Chapter two isdevoted to <strong>in</strong>troduc<strong>in</strong>g the study <strong>and</strong> its methodology. Chapters three through seven present the<strong>in</strong>dividual <strong>studies</strong>. Follow<strong>in</strong>g the <strong>case</strong> <strong>studies</strong>, chapter eight provides a narrative summary of thef<strong>in</strong>d<strong>in</strong>gs. Chapter n<strong>in</strong>e <strong>in</strong>cludes conclusions <strong>and</strong> recommendations. Appendix A <strong>in</strong>cludes the<strong>in</strong>strument <strong>use</strong>d to conduct the <strong>case</strong> study <strong>in</strong>terviews <strong>and</strong> Appendix B conta<strong>in</strong>s a cross-site matrix off<strong>in</strong>d<strong>in</strong>gs.Research <strong>and</strong> Data IssuesThe report beg<strong>in</strong>s with an academic perspective <strong>and</strong> review of the current literature regard<strong>in</strong>g American<strong>Indian</strong>/Alaska Native research <strong>and</strong> <strong>data</strong> issues. This section of the report emphasizes the many barriers<strong>and</strong> challenges to the <strong>collection</strong> <strong>and</strong> report<strong>in</strong>g of <strong>data</strong> on this population. Challenges discussed <strong>in</strong>cludedifficulties <strong>in</strong> identify<strong>in</strong>g American <strong>Indian</strong>s/Alaska Natives; <strong>data</strong> <strong>in</strong>accuracy due to racialmisclassification, small population size, <strong>and</strong> methodological issues; limited f<strong>in</strong>d<strong>in</strong>gs of secondary <strong>data</strong>;<strong>and</strong> little or no shar<strong>in</strong>g of primary <strong>data</strong> with <strong>tribal</strong> communities. This chapter also provides a historicaloverview, background <strong>in</strong>formation, <strong>and</strong> suggested <strong>use</strong>s of the Community-Based Participatory Research(CBPR) model, a promis<strong>in</strong>g research model that effectively demonstrates how partner<strong>in</strong>g with American<strong>Indian</strong>/Alaska Native communities can result <strong>in</strong> high-quality research.Case Studies <strong>in</strong> Tribal Data Collection <strong>and</strong> Use<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association5


MethodologyUs<strong>in</strong>g qualitative research methods <strong>and</strong> a <strong>case</strong> study design, the research exam<strong>in</strong>ed five diverse <strong>tribal</strong>communities where <strong>data</strong> <strong>collection</strong> <strong>and</strong> <strong>use</strong> was an emerg<strong>in</strong>g <strong>and</strong> important issue. These communitieswere Feather River Behavioral Health Services; the Portl<strong>and</strong>, Oregon, urban American <strong>Indian</strong>/AlaskaNative community; Passamaquoddy Tribe, <strong>Indian</strong> Township; St. Regis Mohawk Nation; <strong>and</strong> the PoarchB<strong>and</strong> of Creek <strong>Indian</strong>s. The analysis of <strong>in</strong>-depth <strong>in</strong>terviews <strong>and</strong> document contents resulted <strong>in</strong> f<strong>in</strong>d<strong>in</strong>gsimilar themes, values, issues, challenges, <strong>and</strong> efforts <strong>in</strong> regard to <strong>data</strong> <strong>collection</strong> <strong>and</strong> <strong>use</strong> across thesites.Summary <strong>and</strong> ConclusionsThe five sites reported plac<strong>in</strong>g high value on accurate <strong>and</strong> reliable <strong>data</strong> that serve the needs ofAmerican <strong>Indian</strong>s/Alaska Natives, respect confidentiality, <strong>and</strong> are an expression of the program or tribe.Although there is a substantial <strong>in</strong>terest, enthusiasm, <strong>and</strong> dedication of time <strong>and</strong> resources related to<strong>data</strong>, common issues experienced by these five tribes <strong>in</strong>clude <strong>in</strong>accurate <strong>and</strong> unreliable <strong>data</strong>, <strong>data</strong>produced to satisfy grant requirements for fund<strong>in</strong>g agencies that is rarely returned to the community,<strong>and</strong> many other negative experiences with <strong>data</strong> <strong>in</strong> the past. The <strong>tribal</strong> communities studied <strong>in</strong> this reporthave begun to set a st<strong>and</strong>ard that the <strong>collection</strong> <strong>and</strong> <strong>use</strong> of <strong>data</strong> is imperative. However, comprehensivepolicies around <strong>data</strong>, coord<strong>in</strong>ated <strong>data</strong> systems, <strong>and</strong> <strong>in</strong>tegrated tra<strong>in</strong><strong>in</strong>g approaches have not yet beendeveloped. This presents many challenges for American <strong>Indian</strong>/Alaska Native communities beca<strong>use</strong>their motivation <strong>and</strong> need to <strong>use</strong> <strong>data</strong> is far greater than the f<strong>in</strong>ancial, educational <strong>and</strong> organizationalresources they have access to. Sites that have <strong>in</strong>vested considerable effort <strong>in</strong> the <strong>collection</strong>, control, <strong>and</strong><strong>use</strong> of their own <strong>data</strong> have seen successful results <strong>and</strong> better relationships with other key stakeholders.A lack of services <strong>and</strong> limited resources <strong>in</strong> these <strong>tribal</strong> communities are l<strong>in</strong>ked to the deficiency of<strong>in</strong>formation about the needs of <strong>tribal</strong> children.RecommendationsIn tell<strong>in</strong>g the story of five <strong>tribal</strong> communities, the report provides recommendations aimed at keystakeholders, government agencies, the foundation community, <strong>and</strong> <strong>tribal</strong> <strong>and</strong> urban communities tobr<strong>in</strong>g about needed change. These recommendations <strong>in</strong>clude the follow<strong>in</strong>g: to support the developmentof strategies to deal with the smooth flow of accurate <strong>data</strong> regard<strong>in</strong>g American <strong>Indian</strong>/Alaska Nativepopulations; to improve the quality, accuracy, <strong>and</strong> reliability of American <strong>Indian</strong>/Alaska Native servicepopulation <strong>data</strong> by non-<strong>Indian</strong> jurisdictions <strong>and</strong> agencies; <strong>and</strong> to encourage support by foundation <strong>and</strong>government agencies for enhanc<strong>in</strong>g the capacity of <strong>tribal</strong> <strong>and</strong> urban American <strong>Indian</strong>/Alaska Nativecommunities to collect <strong>and</strong> <strong>use</strong> <strong>data</strong>.Case Studies <strong>in</strong> Tribal Data Collection <strong>and</strong> Use<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association6


CHAPTER 1: AMERICAN INDIAN/ALASKA NATIVE RESEARCHAND DATA ISSUESIntroductionLocat<strong>in</strong>g current, reliable, <strong>and</strong> <strong>use</strong>ful <strong>data</strong> on the American <strong>Indian</strong>/Alaska Native 1 population is achallenge. This is not due to a lack of research; numerous <strong>studies</strong> have been conducted with thispopulation, but for a variety of reasons, the f<strong>in</strong>d<strong>in</strong>gs of these various <strong>studies</strong> generally have either notbeen beneficial or have not been reported for the American <strong>Indian</strong>/Alaska Native populace. Instead,non-Native researchers have enhanced their professional careers <strong>and</strong> reputations <strong>and</strong> have evenf<strong>in</strong>ancially profited from the study of American <strong>Indian</strong>/Alaska Native knowledge, traditions, <strong>and</strong> cultures.Further, <strong>data</strong> are rout<strong>in</strong>ely collected on American <strong>Indian</strong>s/Alaska Natives by state <strong>and</strong> federalgovernmental entities, but the fact rema<strong>in</strong>s that little of these <strong>use</strong>ful sorts of <strong>data</strong> are released to thegeneral public or to American <strong>Indian</strong>/Alaska Native <strong>in</strong>dividuals, tribes, communities, <strong>and</strong> agencies. Thischapter discusses this issue, details why this is the <strong>case</strong>, <strong>and</strong> provides examples from a variety ofagencies <strong>and</strong> discipl<strong>in</strong>es that illustrate the scope of the problem. Additionally, <strong>in</strong> order to not only focuson the scope of the problem but to also address <strong>and</strong> encourage resource capacity build<strong>in</strong>g of American<strong>Indian</strong>s <strong>and</strong> Alaska Natives, resources, such as various <strong>data</strong> acquisition tools provided for governmentagencies, are presented.Next, an historical overview provides the reader with the context for past problematic research agendas<strong>and</strong> <strong>in</strong>formation on why American <strong>Indian</strong>s/Alaska Natives are no longer will<strong>in</strong>g to be passive researchsubjects. In view of this shift, a promis<strong>in</strong>g research model, the Community-Based Participatory Research(CBPR) model is discussed. This model effectively demonstrates how partner<strong>in</strong>g with American<strong>Indian</strong>/Alaska Native communities can result <strong>in</strong> high-quality research. Includ<strong>in</strong>g examples from <strong>studies</strong>that specifically <strong>in</strong>volve American <strong>Indian</strong>s/Alaska Natives, this discussion also provides an overview ofthe CBPR model’s strengths <strong>and</strong> challenges. F<strong>in</strong>ally, the chapter concludes with recommendations onappropriate research protocols <strong>and</strong> cites additional research practice resources for future researchersof American <strong>Indian</strong>s/Alaska Natives.Data IssuesData <strong>collection</strong> efforts are enormous, cont<strong>in</strong>uous, complex, <strong>and</strong> challeng<strong>in</strong>g to underst<strong>and</strong>. Wheneverany type of service is rendered, any k<strong>in</strong>d of form is filled out, a test is taken, or surveys are completed,1This report <strong>use</strong>s the term “American <strong>Indian</strong>/Alaska Native” to refer to the 334 federally-recognized American <strong>Indian</strong>tribes <strong>and</strong> associated <strong>tribal</strong> members <strong>in</strong> the contiguous 48 states, as well as the 229 federally-recognized <strong>tribal</strong>governments <strong>and</strong> associated <strong>tribal</strong> members <strong>in</strong> Alaska. The author prefers this specific term beca<strong>use</strong> much federallegislation <strong>and</strong> policy <strong>use</strong>s this term. The popular alternative, “Native American,” can be confus<strong>in</strong>g, as it often<strong>in</strong>cludes Native Hawaiians <strong>and</strong> Pacific Isl<strong>and</strong>ers, who are legally <strong>and</strong> politically dist<strong>in</strong>ct from American<strong>Indian</strong>s/Alaska Natives <strong>and</strong> <strong>tribal</strong> governments.Case Studies <strong>in</strong> Tribal Data Collection <strong>and</strong> Use<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association7


<strong>data</strong> that can be analyzed are be<strong>in</strong>g collected. Basic background <strong>in</strong>formation, such as age, gender,educational atta<strong>in</strong>ment, occupation, <strong>in</strong>come, <strong>and</strong> race/ethnicity, is <strong>in</strong>formation that is typically collectedon service request forms. Collection of this type of <strong>in</strong>formation allows <strong>data</strong> report<strong>in</strong>g on many differentcharacteristics <strong>and</strong> also allows for <strong>data</strong> report<strong>in</strong>g <strong>and</strong> analysis at the national, state, <strong>and</strong> county levels <strong>in</strong>st<strong>and</strong>ard benchmark reports.American <strong>Indian</strong>s/Alaska Natives give birth, fill out school forms, take tests, get sick, <strong>and</strong> go to thedoctor <strong>and</strong>/or hospital, marry, have jobs, encounter spells of unemployment, go through divorce, <strong>and</strong>experience the pass<strong>in</strong>g of loved ones just like other members of society, yet unlike the rest of society,American <strong>Indian</strong>s/Alaska Natives rarely have these types of <strong>use</strong>ful <strong>data</strong> reported for them. We are part ofthe population, yet for reasons that will be described later <strong>in</strong> this section, little is known about us(S<strong>and</strong>erfur, R<strong>in</strong>dfuss, & Cohen, 1996). American <strong>Indian</strong>/Alaska Native responses to <strong>data</strong> issues are asvaried as the numerous tribes they represent. Progressively, more <strong>and</strong> more tribes value research <strong>and</strong>desire <strong>use</strong>ful <strong>data</strong> for their def<strong>in</strong>ed needs. Other tribes may simultaneously express disgust for all issuesassociated with <strong>data</strong> <strong>and</strong> an acute awareness of the need for <strong>data</strong>. Whatever the response, tribes <strong>and</strong>agencies that serve American <strong>Indian</strong>/Alaska Native populations <strong>in</strong>creas<strong>in</strong>gly have empirically-based<strong>data</strong> <strong>and</strong> research needs that are mostly unmet:S<strong>in</strong>ce the Native people of this hemisphere came <strong>in</strong>to contact with Europeans,we have been the subjects of <strong>in</strong>tense scrut<strong>in</strong>y. Sometimes this scrut<strong>in</strong>y is forf<strong>in</strong>ancial ga<strong>in</strong>, sometimes it is for the sake of knowledge, <strong>and</strong> at other times it isfor the sake of dom<strong>in</strong>ance. In response to this mis<strong>use</strong> <strong>and</strong> ab<strong>use</strong>, <strong>tribal</strong> peoplerecently have begun to appropriate the research process for ourselves. Todaymore <strong>and</strong> more Native people are conduct<strong>in</strong>g research <strong>and</strong> scholarship <strong>in</strong> ourcommunities <strong>and</strong> <strong>in</strong> the <strong>in</strong>stitutions with which we work, <strong>in</strong>clud<strong>in</strong>g the <strong>tribal</strong>colleges. (Crazy Bull, 1997a, p. 1)Anecdotes about <strong>tribal</strong> life are not sufficient when report<strong>in</strong>g to government agencies (Spauld<strong>in</strong>g, 2000),yet, <strong>in</strong>formative <strong>data</strong> on American <strong>Indian</strong>s/Alaska Natives are seldomly produced <strong>and</strong> released to thegeneral public <strong>and</strong> the American <strong>Indian</strong>/Alaska Native community. It should also be po<strong>in</strong>ted out that the<strong>data</strong> needs of tribes, American <strong>Indian</strong>/Alaska Native <strong>in</strong>dividuals, <strong>and</strong> agencies vary widely. Hence,although some <strong>data</strong> on American <strong>Indian</strong>s/Alaska Natives are prepared <strong>and</strong> released to the public; <strong>data</strong>needs are quite specific, <strong>and</strong> there is little likelihood of access<strong>in</strong>g exist<strong>in</strong>g prepared results. Forexample, American <strong>Indian</strong>/Alaska Native teen (ages 15-19) birth rates are generally available for somestates. However, if a researcher is <strong>in</strong>terested <strong>in</strong> American <strong>Indian</strong>/Alaska Native teen birth rates for teenswho are 15-17 years old, it is less likely that these more specific type of results are available <strong>in</strong> aprepared form. The next section briefly overviews def<strong>in</strong>itions of “American <strong>Indian</strong>/Alaska Native” beforediscuss<strong>in</strong>g some of the challenges associated with <strong>data</strong> <strong>collection</strong> <strong>and</strong> analysis efforts <strong>in</strong> <strong>Indian</strong> Country.Case Studies <strong>in</strong> Tribal Data Collection <strong>and</strong> Use<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association8


Data Collection <strong>and</strong> Analysis: Barriers <strong>and</strong> Issues <strong>in</strong> <strong>Indian</strong> CountryDef<strong>in</strong><strong>in</strong>g Who is American <strong>Indian</strong>/Alaska NativeNThere is no simple answer to the question of who is an American <strong>Indian</strong>/Alaska Native (Utter, 2001), <strong>and</strong>yet this question has important <strong>data</strong> implications 2 . There are two primary ways of identify<strong>in</strong>g American<strong>Indian</strong>s/Alaska Natives for <strong>data</strong> purposes. The first method of identification is through <strong>tribal</strong>-enrolledmembership <strong>in</strong> either federally recognized or state recognized tribes, villages, or corporations.Membership requirements differ from tribe to tribe, but there are two dom<strong>in</strong>ant patterns: some m<strong>in</strong>imum<strong>tribal</strong> blood quantum (usually one quarter blood quantum) <strong>and</strong> prov<strong>in</strong>g descent from a previous <strong>tribal</strong>roll. Tribes determ<strong>in</strong>e their own membership requirements <strong>and</strong> typically ma<strong>in</strong>ta<strong>in</strong> membership records.The Bureau of <strong>Indian</strong> Affairs (BIA) issues Certificates of <strong>Indian</strong> Blood to <strong>in</strong>dividuals enrolled <strong>in</strong> federallyrecognized tribes (Thornton, 1996).The second method of identify<strong>in</strong>g American <strong>Indian</strong>s/Alaska Natives for <strong>data</strong> purposes is through selfidentification,which allows an <strong>in</strong>dividual to <strong>in</strong>dicate his/her racial/ethnic heritage on surveys, cens<strong>use</strong>s,forms, etc. Most, but not all <strong>data</strong> <strong>collection</strong> efforts, capture an <strong>in</strong>dividual’s self-identified race/ethnicity,but very few <strong>data</strong> <strong>collection</strong> efforts compile an American <strong>Indian</strong>/Alaska Native’s <strong>tribal</strong> enrollment statusunless <strong>tribal</strong> affiliation is germane to the particular study. So, even if a tribe would like <strong>tribal</strong>-specific<strong>in</strong>formation, the common practice of exclud<strong>in</strong>g <strong>tribal</strong> status prohibits <strong>data</strong> analysis at the <strong>tribal</strong> level. Thislimitation could be addressed with small changes <strong>in</strong> forms <strong>and</strong> surveys, though chang<strong>in</strong>g wellestablished<strong>data</strong>base programs would be a more challeng<strong>in</strong>g obstacle to overcome.For example, the state of New Mexico produces a biennial report on various health statistics for the threelargest <strong>tribal</strong> groups <strong>in</strong> New Mexico: Apaches, Navajos, <strong>and</strong> Pueblos (New Mexico Tribal Report: NewMexico Tribe-Specific Vital Statistics, 2002). Much of the health report consists of an analysis ofsecondary <strong>data</strong> from birth forms. Although New Mexico does have a substantial American <strong>Indian</strong>/AlaskaNative population, many other states have larger American <strong>Indian</strong>/Alaska Native populations <strong>and</strong> shouldbe able to produce similar reports with small changes on their birth forms. In do<strong>in</strong>g so, however, <strong>data</strong><strong>use</strong>rs must be vigilant <strong>in</strong> ma<strong>in</strong>ta<strong>in</strong><strong>in</strong>g the confidentiality <strong>and</strong> privacy of all <strong>in</strong>dividuals <strong>in</strong> any reports thatare prepared.Another example is the U.S. Census Bureau, whose decennial census collects <strong>data</strong> on self-identified<strong>tribal</strong> affiliation <strong>and</strong> American <strong>Indian</strong>/Alaska Native reservation, village, <strong>and</strong> corporation geographicareas. However, the recent changes <strong>in</strong> the race/ethnicity question, which allow <strong>in</strong>dividuals to identify withmore than one race/ethnic category, prohibit direct comparisons between previous decennial census<strong>data</strong> <strong>and</strong> the 2000 census <strong>data</strong> that allowed identification with only one race/ethnic category. Census<strong>data</strong> for 2000 are available for analysis by race, area, <strong>and</strong> for 39 <strong>tribal</strong> group<strong>in</strong>gs (see2For more discussion on this topic, see Goodluck & Willeto, 2000.Case Studies <strong>in</strong> Tribal Data Collection <strong>and</strong> Use<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association9


http://factf<strong>in</strong>der.census.gov/home/aian/aian_aff_sf2.html for more <strong>in</strong>formation), yet readers should beaware that Lobo (2002) cites reasons to be cautious when us<strong>in</strong>g decennial census <strong>data</strong> on urbanAmerican <strong>Indian</strong>s/Alaska Natives. These reasons will be detailed later <strong>in</strong> this chapter’s subsection onU.S. Census Bureau <strong>data</strong>.Data Inaccuracy Problems <strong>and</strong> ChallengesRacial MisclassificationEven when reports or <strong>studies</strong> are published with American <strong>Indian</strong>/Alaska Native <strong>data</strong>, readers areusually cautioned about reliability issues for <strong>data</strong> on this specific population. For <strong>in</strong>stance, American<strong>Indian</strong>/Alaska Native birthweight rates may be impacted by under-registration of very low birthweightrates (Heck, Schoendorf, & Parker, 1999). There are also known racial misclassification problems withthe birth <strong>and</strong> death records of American <strong>Indian</strong>s/Alaska Natives; specifically, more than one-third of<strong>in</strong>fants classified as “American <strong>Indian</strong>” at their births were categorized as belong<strong>in</strong>g to other races ontheir death certificates (Hahn, Mul<strong>in</strong>are, & Teutsch, 1992). Further, <strong>data</strong> from the <strong>National</strong> Center forHealth Statistics (NCHS) have systematic <strong>in</strong>consistencies <strong>in</strong> the racial <strong>and</strong> ethnic cod<strong>in</strong>g for U.S. <strong>in</strong>fants(Sorlie, Rogot, & Johnson, 1992). Frost, Tollestrup, Ross, Sabotta, <strong>and</strong> Kimball (1994) found that “only87% of IHS-registered persons with AI/AN ancestry were correctly identified as AI/AN on the Wash<strong>in</strong>gtonState death certificate” (p. 293). For American <strong>Indian</strong>s/Alaska Natives resid<strong>in</strong>g <strong>in</strong> the states of California<strong>and</strong> Oklahoma, the rates of American <strong>Indian</strong>/Alaska Native <strong>in</strong>fant mortality <strong>in</strong>creased when adjusted forracial misclassification (Epste<strong>in</strong>, Moreno, & Bacchetti, 1997; Kennedy & Deapen, 1991).Small Population Size <strong>and</strong> Methodological IssuesThere are many challenges associated with the comparatively small population size of American<strong>Indian</strong>s/Alaska Natives. This section <strong>in</strong>cludes examples from a variety of discipl<strong>in</strong>es <strong>and</strong> fields todemonstrate how American <strong>Indian</strong>/Alaska Native <strong>data</strong> are rout<strong>in</strong>ely neglected <strong>in</strong> research <strong>studies</strong> or howresearchers fail to report <strong>use</strong>ful <strong>data</strong> on this population.A popular method for <strong>data</strong> <strong>collection</strong> is the <strong>use</strong> of surveys. Well-designed surveys can elicit important<strong>in</strong>formation for substantially lower costs than other research methods beca<strong>use</strong> at the most macro level,surveys, <strong>in</strong> general, r<strong>and</strong>omly sample a certa<strong>in</strong> number or percentage of the entire population ratherthan the entire population. Beca<strong>use</strong> the American <strong>Indian</strong>/Alaska Native population is so small comparedto the general U.S. population (S<strong>and</strong>efur et al., 1996), r<strong>and</strong>om samples will generate very small numbersof American <strong>Indian</strong>s/Alaska Natives, <strong>and</strong> often, these numbers are too small to produce dependablesamples that allow generalization (Ast<strong>in</strong>, 1982). In <strong>case</strong>s where the number of American <strong>Indian</strong>s/AlaskaNatives <strong>in</strong> the sample is small, it is typical for researchers to then place them <strong>in</strong> the “other” categoryalongside other non-Euro-American racial or ethnic groups (Fries, 1987). This renders American<strong>Indian</strong>/Alaska Native specific <strong>data</strong> <strong>in</strong>visible, although American <strong>Indian</strong>s/Alaska Natives are technicallypart of the f<strong>in</strong>d<strong>in</strong>gs of the study. For many American <strong>Indian</strong>/Alaska Native <strong>in</strong>dividuals who take part <strong>in</strong>Case Studies <strong>in</strong> Tribal Data Collection <strong>and</strong> Use<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association10


such <strong>studies</strong>, this common practice is far from acceptable. For example, when the author was <strong>in</strong>graduate school, many statistics courses <strong>use</strong>d the General Social Survey (GSS) <strong>data</strong> for courseassignments. While the GSS has a large r<strong>and</strong>om sample that surveys many elements of social life, thesample size of American <strong>Indian</strong>s/Alaska Natives was too small to allow <strong>data</strong> <strong>and</strong> statistical analysis onthis racial/ethnic group. The small numbers issue could be addressed by over-sampl<strong>in</strong>g the American<strong>Indian</strong>/Alaska Native population, thus enabl<strong>in</strong>g sophisticated statistical analysis. Unfortunately, as manyresearchers po<strong>in</strong>t out, there are prohibitively high costs associated with this procedure (Ow<strong>in</strong>gs & Peng,1999):The large national <strong>data</strong>-sets that are <strong>use</strong>d to exam<strong>in</strong>e blacks, whites, <strong>and</strong>Lat<strong>in</strong>os, such as the national Longitud<strong>in</strong>al Surveys <strong>and</strong> the Panel Study ofIncome Dynamics do not sample consciously among the American <strong>Indian</strong>population. Consequently, the public knows less about American <strong>Indian</strong>s thanabout many other groups <strong>in</strong> our society. (S<strong>and</strong>erfur et al., 1996, p. 12)For example, <strong>in</strong> a large-scale, longitud<strong>in</strong>al study on child welfare, researchers <strong>in</strong>tentionally did notsample <strong>in</strong>dividuals liv<strong>in</strong>g with<strong>in</strong> American <strong>Indian</strong>/Alaska Native reservation boundaries beca<strong>use</strong><strong>in</strong>clud<strong>in</strong>g them would generate very few respondents <strong>and</strong> would swell <strong>data</strong> <strong>collection</strong> expenditures(Barth, 2000). Only American <strong>Indian</strong>s/Alaska Natives liv<strong>in</strong>g outside of reservation boundaries were<strong>in</strong>cluded <strong>in</strong> the sampl<strong>in</strong>g frame. Beca<strong>use</strong> of the limited sampl<strong>in</strong>g frame, f<strong>in</strong>d<strong>in</strong>gs from the longitud<strong>in</strong>alstudy on child welfare cannot be generalized to the entire American <strong>Indian</strong>/Alaska Native population,particularly those American <strong>Indian</strong>s/Alaska Natives resid<strong>in</strong>g on their reservations beca<strong>use</strong> they were not<strong>in</strong>cluded <strong>in</strong> the sampl<strong>in</strong>g frame.Sometimes it is the targeted population that objects to the research methodology <strong>and</strong> fails to respond.For example, some <strong>studies</strong> utiliz<strong>in</strong>g survey questionnaires have not been successful <strong>in</strong> obta<strong>in</strong><strong>in</strong>gAmerican <strong>Indian</strong>/Alaska Native responses (Church et al., 1990, as cited <strong>in</strong> Quigley, H<strong>and</strong>y, Goble,Sanchez, & George, 2000). Other times, researchers <strong>in</strong>tentionally leave out diverse populations. In thepast, epidemiological <strong>studies</strong> have often neglected to <strong>in</strong>clude American <strong>Indian</strong>s/Alaska Natives <strong>in</strong> astudy beca<strong>use</strong> the American <strong>Indian</strong>/Alaska Native population is not considered a homogeneous group.These <strong>studies</strong> restricted the sampl<strong>in</strong>g frame to homogeneous groups <strong>in</strong> order to lessen variation <strong>in</strong>factors not vital to the research question. It is clear that “these <strong>in</strong>herent biases <strong>in</strong> environmental healthresearch methods magnify the historical neglect of concern for Native communities” (Quigley et al.,2000, p. 309). Chief among researchers’ concerns is that the statistical power of the models be<strong>in</strong>gtested could be weakened by <strong>in</strong>clud<strong>in</strong>g diverse ethnic populations <strong>in</strong> the sample (Brown, 1994, as cited<strong>in</strong> Quigley et al., 2000). Furthermore, the practice of “color-bl<strong>in</strong>d” research “has resulted <strong>in</strong> <strong>data</strong> throughwhich American <strong>Indian</strong>s can not be identified, nor their needs isolated from those of the majority” (Davis,Erickson, Johnson, Marshall, Runn<strong>in</strong>g Wolf, & Santiago, 2002, p. 1). The next section of this chapterCase Studies <strong>in</strong> Tribal Data Collection <strong>and</strong> Use<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association11


def<strong>in</strong>itely enumerated, while 13 were not matched with census results. Thismeans that they may not have been enumerated <strong>and</strong>, <strong>in</strong>deed, to theirknowledge they were not. (p. 4)Decennial census <strong>data</strong> does not <strong>in</strong>clude all American <strong>Indian</strong>s/Alaska Natives resid<strong>in</strong>g <strong>in</strong> urban areas.This is a significant issue s<strong>in</strong>ce the majority of the American <strong>Indian</strong>/Alaska Native population resides <strong>in</strong>urban areas. The American <strong>Indian</strong>/Alaska Native urban populations most likely to be overlooked <strong>in</strong> thedecennial census are those who frequent soup kitchens, group quarters, residential alcohol treatmentcenters <strong>and</strong> women shelters; those who sleep <strong>in</strong> the streets, city parks, vehicles, short-term lodg<strong>in</strong>gfacilities, <strong>and</strong> <strong>in</strong> the homes of friends <strong>and</strong> acqua<strong>in</strong>tances; <strong>and</strong> those who frequently travel out of town. Inshort, the most mobile American <strong>Indian</strong>s/Alaska Natives are the least likely to be counted <strong>in</strong> decennialcens<strong>use</strong>s (Lobo, 2002).Bureau of <strong>Indian</strong> Affairs: Social Services DataTribes often send various types of <strong>data</strong> to the BIA, but few or no reports are forthcom<strong>in</strong>g. Inconversations with American <strong>Indian</strong>s/Alaska Natives over the years, many have questioned what the BIAdoes with all of the <strong>data</strong> that tribes are required to send to them. Larry Blair, BIA Chief of the Division ofSocial Services <strong>in</strong> Wash<strong>in</strong>gton DC’s Office of Tribal Services (personal communication, June 12, 2000)outl<strong>in</strong>ed the challenges of obta<strong>in</strong><strong>in</strong>g <strong>data</strong> from sovereign <strong>tribal</strong> nations, but it is unclear where these <strong>data</strong>are located <strong>and</strong> why they are not analyzed <strong>and</strong> reported. Mr. Blair <strong>in</strong>dicated that when partial <strong>data</strong> aresubmitted to national BIA offices, those <strong>data</strong> are returned to the service area to be completed <strong>and</strong>resubmitted. Thus, <strong>data</strong> are often <strong>in</strong> flux between local units, area offices, <strong>and</strong> the national headquarters.(Goodluck & Willeto, 2000, p. 45). Hence, it often happens that BIA social services <strong>data</strong> are not analyzedfor American <strong>Indian</strong>/Alaska Native children, youth, <strong>and</strong> families.Not all divisions of the BIA are lack<strong>in</strong>g <strong>in</strong> reports. The Office of Tribal Services prepares the <strong>Indian</strong> LaborForce Report (Bureau of <strong>Indian</strong> Affairs, 1999) that lists some employment <strong>data</strong> for <strong>tribal</strong>ly enrolledmembers. The U.S. General Account<strong>in</strong>g Office (GAO) has issued reports on BIA schools. It is importantto note that “<strong>in</strong>adequate BIA <strong>data</strong>” are cited as problematic <strong>in</strong> one GAO report titled Bureau of <strong>Indian</strong>Affairs Schools: Expenditures <strong>in</strong> Selected Schools Are Comparable to Similar Public Schools, but DataAre Insufficient to Judge Adequacy of Fund<strong>in</strong>g <strong>and</strong> Formulas (Bureau of <strong>Indian</strong> Affairs [BIA], 2003a).Furthermore, problems with “BIA <strong>data</strong> error” are cited <strong>in</strong> another GAO report titled Bureau of <strong>Indian</strong>Affairs Schools: New Facilities Management Information System Promis<strong>in</strong>g, but Improved Data AccuracyNeeded (Bureau of <strong>Indian</strong> Affairs [BIA], 2003b).Internal ReportsOften, reports may be generated for <strong>in</strong>ternal purposes but are most likely only distributed to appropriatepersonnel with<strong>in</strong> a particular organization <strong>and</strong> these types of reports rarely reach any of the AmericanCase Studies <strong>in</strong> Tribal Data Collection <strong>and</strong> Use<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association13


important to build tribes’ capacity to actively engage <strong>in</strong> the research process, <strong>in</strong>clud<strong>in</strong>g access<strong>in</strong>gAmerican <strong>Indian</strong>/Alaska Native <strong>data</strong> <strong>and</strong> produc<strong>in</strong>g reports that directly benefit their own communities<strong>and</strong> people. To this end, an overview of some <strong>data</strong> systems <strong>and</strong> types of computer software isdiscussed <strong>in</strong> this section. This overview is by no means a comprehensive list of all the <strong>data</strong> systems <strong>and</strong>software <strong>in</strong> <strong>use</strong> <strong>in</strong> the numerous federal, state, <strong>and</strong> county agencies throughout <strong>Indian</strong> Country. The ideais to encourage build<strong>in</strong>g research capacity for <strong>in</strong>dividuals who work <strong>in</strong> <strong>tribal</strong> communities <strong>and</strong>organizations.Data Acquisition ToolsWhen research<strong>in</strong>g well-be<strong>in</strong>g <strong>in</strong>dicator <strong>data</strong> for American <strong>Indian</strong>/Alaska Native children, youth, <strong>and</strong>families at the national <strong>and</strong> state levels, the author learned of various <strong>data</strong> acquisition tools viaconference attendance <strong>and</strong> participation, phone calls, <strong>and</strong> e-mail correspondence with personnel at theU.S. Census Bureau <strong>and</strong> NCHS. Table 1 lists <strong>data</strong> acquisition tools that are fairly simple to <strong>use</strong>. Thetools are listed <strong>in</strong> order of their ease of <strong>use</strong> (easiest to more difficult).Table 1. Data Acquisition ToolsTOOLWeb-Based Injury Statistics Query <strong>and</strong>Report<strong>in</strong>g SystemACRONYMWISQARSWEBSITE FOR MORE INFORMATIONwww.cdc.gov/ncipc/wisqarsStatistical Extraction <strong>and</strong> Tabulation System SETS www.cdc.gov/nchs.sets.htmAmerican Fact F<strong>in</strong>der AFF factf<strong>in</strong>der.census.gov/home/saff/ma<strong>in</strong>.htmlFederal Electronic Research <strong>and</strong> Review FERRET www.the<strong>data</strong>web.orgExtraction ToolAnnie E. Casey Foundation KIDS Count AECF www.kidscount.orgSoftwareThe follow<strong>in</strong>g short list of <strong>in</strong>cluded software comprises what that author has most often witnessed <strong>in</strong> <strong>use</strong>for <strong>data</strong>base analysis across offices <strong>and</strong> agencies:1. Microsoft Excel, a <strong>data</strong>base <strong>and</strong> spreadsheet software, seems to be <strong>in</strong> <strong>use</strong> at most state-levelagencies, as well as at county <strong>and</strong> <strong>tribal</strong> organizations. It can also be <strong>use</strong>d for simpledescriptive analysis. Other examples of this type of software <strong>in</strong>clude dBase <strong>and</strong> Lotus.2. Statistical Analysis System (SAS), Statistical Packages for the Social Sciences (SPSS), <strong>and</strong> SQLenable <strong>data</strong> analysis from the simplest of descriptive reports to rigorous statistical analysis, <strong>and</strong>much more. Quite often, agencies that require the h<strong>and</strong>l<strong>in</strong>g of large <strong>data</strong> sets, such as state vitalstatistics offices, utilize SAS. In fact, it appears that WISQARS <strong>use</strong>s a form of SAS programm<strong>in</strong>gthat is especially <strong>use</strong>r-friendly.Case Studies <strong>in</strong> Tribal Data Collection <strong>and</strong> Use<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association15


3. Agency-specific systems are <strong>use</strong>d by some tribes <strong>and</strong> agencies that serve American <strong>Indian</strong>s<strong>and</strong> Alaska Natives. For example, IHS has developed the Referred Care Information System(RPMS) for its <strong>use</strong>.Build<strong>in</strong>g Data Capacity for American <strong>Indian</strong>/Alaska Native CommunitiesThe aim of this section is to list some of the tra<strong>in</strong><strong>in</strong>gs <strong>and</strong> resources that are available for <strong>data</strong> <strong>use</strong>rs.Table 2 conta<strong>in</strong>s the name of the organization, the type of tra<strong>in</strong><strong>in</strong>g or resource available, <strong>and</strong> a Websiteaddress for additional <strong>in</strong>formation.Table 2. Resources for Users of American <strong>Indian</strong>/Alaska Native DataORGANIZATIONTYPE OF RESOURCEWEBSITE FOR MORE INFORMATIONCensus Bureau Census statistics www.census.gov/mso/www/tra<strong>in</strong><strong>in</strong>g/<strong>in</strong>dex.htmUnderst<strong>and</strong><strong>in</strong>g federal statistics www.census.gov/mso/www/tra<strong>in</strong><strong>in</strong>g/<strong>in</strong>dex.htmFERRETwww.the<strong>data</strong>web.orgNCHSConference tra<strong>in</strong><strong>in</strong>g & research www.cdc/gov/nchsfellowshipsBLS Performs economic <strong>data</strong> analysis www.bls.govICPSR Workshops on quantitative analysis www.icpsr.umich.edu/tra<strong>in</strong><strong>in</strong>g/summer/<strong>in</strong>dex.htmlCDI Knowledge discovery & <strong>data</strong> analysis www.<strong>in</strong>sight.nau/eduSAS Institute Conference & workshops with <strong>data</strong> www.sas.comAnnie E. CaseyFoundationEducational, social, economic, <strong>and</strong>physical well-be<strong>in</strong>g <strong>in</strong>dicator <strong>data</strong> forchildrenwww.kidscount.orgAn Example of Successful Data Analysis Efforts: American <strong>Indian</strong>/Alaska Native Well-Be<strong>in</strong>g Data atthe State <strong>and</strong> <strong>National</strong> LevelsThe author’s experience work<strong>in</strong>g with secondary American <strong>Indian</strong>/Alaska Native well-be<strong>in</strong>g <strong>data</strong> at thenational <strong>and</strong> state levels demonstrates that with enough determ<strong>in</strong>ation <strong>and</strong> resources, American<strong>Indian</strong>/Alaska Native <strong>data</strong> analysis can be accomplished. However, it is important to note that the NativeAmerican Kids Well-Be<strong>in</strong>g Indicators project unfolded over numerous years. The first year (Goodluck &Willeto, 200) <strong>in</strong>volved the del<strong>in</strong>eation of historical issues <strong>and</strong> barriers to American <strong>Indian</strong>/Alaska Native<strong>data</strong> <strong>collection</strong>. The second year (Goodluck & Willeto, 2001) presented the 10 well-be<strong>in</strong>g <strong>in</strong>dicator <strong>data</strong>for American <strong>Indian</strong>/Alaska Native children <strong>and</strong> youth at the national level. The third year (Willeto, 2002)offered the 10 well-be<strong>in</strong>g <strong>in</strong>dicator <strong>data</strong> for 13 states. The fourth year (Willeto & Goodluck, 2003,forthcom<strong>in</strong>g) extends the report<strong>in</strong>g mechanism to 14 states <strong>and</strong> <strong>in</strong>cludes trend <strong>data</strong>. Althoughsecondary <strong>data</strong> often have limitations, they are typically all that is available for the American<strong>Indian</strong>/Alaska Native population. Commissioned national surveys of American <strong>Indian</strong>s/Alaska Nativeswould be ideal; however, such surveys would be prohibitively expensive to obta<strong>in</strong>. Even with limitations,secondary <strong>data</strong> is much more accessible <strong>in</strong> terms of costs.Case Studies <strong>in</strong> Tribal Data Collection <strong>and</strong> Use<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association16


Although many federal agencies or research <strong>studies</strong> do not release specific American <strong>Indian</strong>/AlaskaNative <strong>data</strong> beca<strong>use</strong> of small sample sizes, with some <strong>data</strong>sets it is possible <strong>and</strong> imperative to <strong>in</strong>creaseAmerican <strong>Indian</strong>/Alaska Native sample sizes to boost reliability. For example, multiple Current PopulationSurvey (CPS) basic monthly <strong>data</strong>sets can be concatenated over numerous years to create large enoughsample sizes for American <strong>Indian</strong>/Alaska Native <strong>data</strong> analysis.Historical Overview <strong>and</strong> a More Promis<strong>in</strong>g Research Model for <strong>Indian</strong>Country: The Community-Based Participatory Research ModelAmerican <strong>Indian</strong>s/Alaska Natives As Past Research SubjectsMore than three decades ago, anthropologists George <strong>and</strong> Louise Sp<strong>in</strong>dlerreported that their profession had studied American <strong>Indian</strong>s more than any othergroup <strong>in</strong> the world. The announcement was not surpris<strong>in</strong>g. For centuries Nativepeople have been the subjects of research <strong>studies</strong>. (Swisher, 1993, p. 4)S<strong>in</strong>ce contact between American <strong>Indian</strong>s/Alaska Natives <strong>and</strong> Europeans began, there has developed asubstantial record of research by the latter on the former. Relationships between researchers <strong>and</strong> thesubjects of that research have not been of a benign nature. Non-Native researchers have benefitedenormously while American <strong>Indian</strong>s/Alaska Natives have not experienced any appreciable remunerationfrom their <strong>in</strong>volvement <strong>in</strong> the numerous <strong>studies</strong>. An example of these exploitive relationships can befound <strong>in</strong> the follow<strong>in</strong>g:A non-Native researcher hired by the Miami Tribe to do historical research wasgiven access to private <strong>tribal</strong> materials. However, he exploited his relationshipby appropriat<strong>in</strong>g <strong>and</strong> mis<strong>in</strong>terpret<strong>in</strong>g <strong>tribal</strong> history <strong>and</strong> knowledge. The first twogrants clearly specified the research would be the property of the Miami Nation.The next three grants, however, were written by the author <strong>and</strong> omitted theproperty cla<strong>use</strong>. The researcher subsequently took full ownership of the work<strong>and</strong> implied he could do as he wished with the materials. When some elderschallenged his historical facts, he ref<strong>use</strong>d to listen. This person epitomized theexperience with many tribes with researchers who <strong>use</strong> the tribe’s knowledge fortheir own f<strong>in</strong>ancial <strong>and</strong> professional ga<strong>in</strong>. (Crazy Bull, 1997a, p. 4)Be<strong>in</strong>g cont<strong>in</strong>ually researched <strong>and</strong> exploited <strong>in</strong> the name of science has resulted <strong>in</strong> the current exhibitionof tribes extreme war<strong>in</strong>ess of researchers <strong>and</strong> their agendas. Even more <strong>in</strong>sult<strong>in</strong>g is the situation where<strong>in</strong>researchers consider themselves as caretakers of American <strong>Indian</strong>/Alaska Native history (Mihesuah,1998).Case Studies <strong>in</strong> Tribal Data Collection <strong>and</strong> Use<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association17


The preced<strong>in</strong>g scenario po<strong>in</strong>ts to anthropologists <strong>and</strong> historians as professionals <strong>in</strong>volved <strong>in</strong> theexploitation of American <strong>Indian</strong>s/Alaska Natives for research purposes. Professionals who workspecifically with children, youth, <strong>and</strong> families also experience challenges.Social workers, particularly those from outside the Native community, are facedwith difficult challenges when try<strong>in</strong>g to establish trust<strong>in</strong>g relationships withNative People (Broken Nose, 1992). Likewise, researchers are often viewednegatively <strong>in</strong> Native communities. Native people have often been exploited. Inthe past researchers have come <strong>in</strong> from the outside to study Native people <strong>and</strong>to gather <strong>data</strong>. Frequently Native communities have not been <strong>in</strong>formed of thestudy f<strong>in</strong>d<strong>in</strong>gs nor have they experienced the benefits of the research. Fear ofexploitation has led many Native peoples to avoid <strong>in</strong>volvement <strong>in</strong> researchprojects. (Native American Leadership Commission on Health <strong>and</strong> AIDS, 1994).(Weaver, 1997, p. 7)This historical overview has recalled the past experience of American <strong>Indian</strong>s/Alaska Natives as passiveresearch subjects. In these <strong>case</strong>s, once <strong>data</strong> were collected, researchers typically exited the community<strong>and</strong> were seldom heard from aga<strong>in</strong>. Especially problematic from the viewpo<strong>in</strong>t of the American<strong>Indian</strong>/Alaska Native communities was that their participation <strong>in</strong> the numerous <strong>studies</strong> yielded noapparent benefits to themselves, their tribes, or their communities.Pursuit of Science vs. Needs of Tribes: American <strong>Indian</strong>s/Alaska Natives Do Not Benefitfrom ResearchA significant part of the agenda of most researchers <strong>and</strong> scholars has to do with promotion <strong>and</strong> tenure, aprocess that requires establish<strong>in</strong>g a research record that impresses their academic peers. Most often,the scientific method, a method imported from Germany that emphasizes the power of objectivity <strong>and</strong>observation, is employed <strong>in</strong> the pursuit of science (Crazy Bull, 1997a):S<strong>in</strong>ce contact, non-<strong>Indian</strong>s have been fasc<strong>in</strong>ated with American <strong>Indian</strong>s, <strong>and</strong>they cont<strong>in</strong>ue to explore almost every aspect of <strong>Indian</strong>s’ cultures <strong>and</strong>physiologies. Library shelves conta<strong>in</strong> vast <strong>collection</strong>s of books with American<strong>Indian</strong> themes. The majority of books <strong>and</strong> articles, <strong>in</strong> addition to movies,television shows, <strong>and</strong> documentaries, have been written <strong>and</strong> produced by non-<strong>Indian</strong>s (some of whom attempt to pass themselves off as <strong>Indian</strong>s) who havebeen educated <strong>and</strong> tra<strong>in</strong>ed to conduct research by other non-<strong>Indian</strong>s.Although most non-<strong>Indian</strong> scholars respect the peoples <strong>and</strong> cultures theystudy, many do not. Intrusive research of American <strong>Indian</strong>s <strong>and</strong> publication of<strong>in</strong>formation that tribes do not wish dissem<strong>in</strong>ated to the general public constitutea major source of <strong>in</strong>terracial conflict. Dissension between those who desire toCase Studies <strong>in</strong> Tribal Data Collection <strong>and</strong> Use<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association18


keep their cultures sheltered from curious <strong>in</strong>terlopers <strong>and</strong> those who cryacademic freedom underm<strong>in</strong>es the credibility of all scholarly <strong>studies</strong>.(Mihesuah, 1993, p. 131)With<strong>in</strong> the academic world, the pursuit of science for knowledge’s sake is seen as a loftier aspirationthan applied research, which attends to the needs <strong>and</strong> <strong>in</strong>terests of the population be<strong>in</strong>g studied. For aresearcher <strong>in</strong>terested <strong>in</strong> the former, it is possible to be far removed socially, politically, economically,emotionally, physically, <strong>and</strong> spiritually from the research subject’s reality <strong>and</strong> may be easy to ignore thewell-be<strong>in</strong>g of the American <strong>Indian</strong>/Alaska Native community. This is not the <strong>case</strong> for most American<strong>Indian</strong>/Alaska Native researchers: “unlike most non-<strong>Indian</strong>s who write professionally about <strong>Indian</strong>s,<strong>Indian</strong>s reta<strong>in</strong> an often emotionally charged commitment to <strong>Indian</strong> issues that extends well beyondacademia” (Mihesuah, 1998, p. 14).Although <strong>in</strong> basic research it is important to identify <strong>and</strong> report on significant relationships <strong>in</strong> the <strong>data</strong> <strong>in</strong>an objective manner, given that research <strong>in</strong>struments were designed by non-Native researchers, it is nosmall wonder that negative associations <strong>and</strong> problems usually come to the forefront of various <strong>studies</strong> ofAmerican <strong>Indian</strong>/Alaska Native communities (Struthers, 2001). In fact, Waller, Risley-Curtiss, Murphy,Medill, <strong>and</strong> Moore (1998) found <strong>in</strong> a literature review of social work <strong>studies</strong> that no articles foc<strong>use</strong>d onpositive elements of American <strong>Indian</strong>s/Alaska Natives. Rather, all 171 articles analyzed by theresearcher concentrated on problems associated with the American <strong>Indian</strong>/Alaska Native population. Ifresearchers’ past <strong>and</strong> present negative depictions of American <strong>Indian</strong>/Alaska Native lives wereabsolutely accurate <strong>and</strong> objective, then American <strong>Indian</strong>s/Alaska Natives would have ceased to exist.Yet, the American <strong>Indian</strong>/Alaska Native population has substantially rebounded from the population lowof 250,000 <strong>in</strong> 1900. In light of this rebound, it is clear that there must be strengths associated with thispopulation that non-Native researchers have missed or are not <strong>in</strong>terested <strong>in</strong> explor<strong>in</strong>g. Instead of<strong>in</strong>vestigat<strong>in</strong>g these strengths, whatever struck researchers as unusual, odd, or perhaps evenenterta<strong>in</strong><strong>in</strong>g about Native Americans was targeted for <strong>in</strong>vestigation.A More Promis<strong>in</strong>g Research Model for <strong>Indian</strong> Country: The Community-BasedParticipatory Research ModelNumerous communities have experienced the negative impact of ma<strong>in</strong>stream, positivist research.Disenfranchised groups or groups that are perceived as politically weak have been especially targetedfor research <strong>studies</strong>. African-Americans have the Tuskegee experiment, as well as other researchorientedatrocities, as pa<strong>in</strong>ful rem<strong>in</strong>ders to distrust researchers (McAvoy, W<strong>in</strong>ter, Outley, McDonald, &Chavez, 2000). In addition, many <strong>in</strong>digenous peoples throughout the world have also been victims ofproblematic research agendas <strong>and</strong> are therefore seek<strong>in</strong>g to protect <strong>in</strong>digenous knowledge (Smith, 1999;Battiste & Henderson, 2000; Brown, 2003).Case Studies <strong>in</strong> Tribal Data Collection <strong>and</strong> Use<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association19


Imbedded with<strong>in</strong> these works are guidel<strong>in</strong>es <strong>and</strong> protocols to improve <strong>and</strong> <strong>in</strong>volve American<strong>Indian</strong>/Alaska Native communities <strong>in</strong> research activities. Very promis<strong>in</strong>g are more recent <strong>studies</strong> thatengage the Community-Based Participatory Research (CBPR) model <strong>in</strong> one form or another. Althoughother appropriate models exist, such as the Cultural Network Review Model (Red Horse, 1982, as cited<strong>in</strong> Red Horse, Mart<strong>in</strong>ez, Day, Day, Poupart, & Scharnberg, 2001), discussion here will focus upon theCBPR model. Briefly, CBPR posits that researchers should partner with communities <strong>in</strong> determ<strong>in</strong><strong>in</strong>gresearch questions, design, methodology, <strong>data</strong> <strong>collection</strong>, <strong>and</strong> protocol, as well as whether communitieswill have or share ownership of the <strong>data</strong>:Community-based participatory research (CBPR), which is generatedcollaboratively <strong>in</strong> partnership between scientists <strong>and</strong> others, is an alternative tothe “top-down” technical assistance from experts to practitioners to communityresidents (Kritek, et al., 2002). It is seen by many as a way to make the best <strong>use</strong>of results which are believed to be effective, namely, that these results areactually <strong>use</strong>d by those most affected. (Smith, Hamilton, Sheats, Mensah,Apantaku, & Sullivan, 2003, p. 219)S<strong>in</strong>ce American <strong>Indian</strong>s/Alaska Natives collaborate with researchers <strong>in</strong> the CBPR model, their <strong>in</strong>terests<strong>and</strong> needs are also addressed <strong>in</strong> this type of research. Studies that practice participatory research withAmerican <strong>Indian</strong>/Alaska Native communities are also likelier to succeed among American <strong>Indian</strong>s/AlaskaNatives (Davis & Reid, 1999). Community-based research also reflects ideals of self-determ<strong>in</strong>ationbeca<strong>use</strong> American <strong>Indian</strong>s/Alaska Natives are not passive research subjects; outsiders <strong>and</strong> <strong>in</strong>siderscooperate <strong>and</strong> share <strong>in</strong> the research process. As Guyette (1983, p. xvi) states“Community-basedresearch can be an <strong>in</strong>valuable tool <strong>in</strong> community development, as a means of document<strong>in</strong>g needs <strong>and</strong>test<strong>in</strong>g solutions.” Other <strong>studies</strong> of community-based research po<strong>in</strong>t out the more political componentsof the participatory research model:In addition to overcom<strong>in</strong>g the <strong>in</strong>equities of science, these participatory researchpr<strong>in</strong>ciples offer support to strengthen <strong>and</strong> empower oppressed populationsthrough develop<strong>in</strong>g confidence <strong>and</strong> critical consciousness skills of affectedcommunity members; strengthen<strong>in</strong>g activist organizations; improv<strong>in</strong>g liv<strong>in</strong>gconditions (Nyden & Wiewal, 1992), <strong>and</strong> collect<strong>in</strong>g <strong>and</strong> validat<strong>in</strong>g communityknowledge. These features are important considerations <strong>in</strong> Native communitieswhere high levels of poverty, stress, <strong>and</strong> pollution are difficult challenges for itsmembers, contribut<strong>in</strong>g to <strong>in</strong>dividual <strong>and</strong> community health status (Kiser, Boaria,& Hitton, 1995). (Quigley et al., 2000, p. 312)Likewise, approaches that <strong>in</strong>corporate <strong>in</strong>digenous worldviews <strong>and</strong> concepts of harmony, fluidity, <strong>and</strong>holistic approaches to social life will produce greater underst<strong>and</strong><strong>in</strong>g of American <strong>Indian</strong>s/Alaska NativesCase Studies <strong>in</strong> Tribal Data Collection <strong>and</strong> Use<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association20


(Struthers, 2001). The follow<strong>in</strong>g subsections highlight the strengths <strong>and</strong> weaknesses of the CBPR modelas described <strong>in</strong> <strong>studies</strong> specifically with American <strong>Indian</strong>/Alaska Native communities. Given that theapplication of the CBPR model with American <strong>Indian</strong>/Alaska Native communities is a fairly recent<strong>in</strong>novation, the <strong>studies</strong> cited as examples will span a variety of discipl<strong>in</strong>es <strong>and</strong> fields.Strengths of the Community-Based Participatory Research ModelQuigley, et al. (2000) reported a very successful CBPR experience. Their four-year collaborativeparticipatory research project on manag<strong>in</strong>g hazardous material was deemed successful beca<strong>use</strong> theAmerican <strong>Indian</strong>/Alaska Native Community Advisory Committee (CAC) kept the researchers accountable<strong>and</strong> honest. From the start, CAC members let the researches know of their cynicism, complete distrust,“<strong>and</strong> their disda<strong>in</strong> for a scientific world view that led to the radiation poison<strong>in</strong>g of their people” (Quigleyet al., 2000, p. 327). The researchers acknowledged <strong>and</strong> accepted the CAC’s position, which allowed anopenness <strong>in</strong> communication l<strong>in</strong>es between the two groups <strong>and</strong> was central to the successfulcollaborative project. Also, cont<strong>in</strong>ual feedback from community members on workshops was elicited byresearchers <strong>and</strong> the feedback was <strong>in</strong>tegrated <strong>in</strong>to the design of future workshop <strong>and</strong> educationmodules. In addition, the study also cites the importance of <strong>tribal</strong> support, which enhanced thelegitimacy of the project.Sharp <strong>and</strong> Foster (2002) stated that a study on the effects of polychlor<strong>in</strong>ated biphenyls on American<strong>Indian</strong>/Alaska Native health <strong>in</strong> the Akwesasne community was successful beca<strong>use</strong> the researchscientists <strong>and</strong> the Akwesasne people established a cooperative relationship based on the pr<strong>in</strong>ciples ofmutual empowerment, mutual equity, <strong>and</strong> mutual respect (Akwesasne Research Advisory Committee,1996 as cited <strong>in</strong> Sharp & Foster, 2002).These guid<strong>in</strong>g pr<strong>in</strong>ciples were jo<strong>in</strong>tly agreed upon by communityrepresentatives <strong>and</strong> members of the research team from SUNY. Approval of theresearch was obta<strong>in</strong>ed from both the Akwesasne community <strong>and</strong> <strong>in</strong>dividualresearch participants. Project goals were determ<strong>in</strong>ed jo<strong>in</strong>tly <strong>and</strong> designed tomaximize <strong>data</strong> quality while simultaneously m<strong>in</strong>imiz<strong>in</strong>g the disruption ofcommunity activities. Community members were <strong>in</strong>volved <strong>in</strong> the project asresearch assistants, <strong>and</strong> after receiv<strong>in</strong>g proper tra<strong>in</strong><strong>in</strong>g, these researchassistants collected tissue samples <strong>and</strong> conducted <strong>in</strong>terviews. The SUNYresearchers believed the success of their research project was based largelyupon the early stage at which the cooperative relationship with the Akwesasnedeveloped, the formal approval of the study given by the Akwesasne, theparticipation of community partners <strong>in</strong> communicat<strong>in</strong>g research results, <strong>and</strong>shared authorship on the publication of research papers <strong>and</strong> reports. (p. 146)Case Studies <strong>in</strong> Tribal Data Collection <strong>and</strong> Use<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association21


In another study, researchers of the Kahnawake, a Mohawk community near Montreal, Canada,documented high rates of Type 2 diabetes among the population (Potv<strong>in</strong>, Cargo, McComber, Delormier,& Macauley, 2003). Upon receiv<strong>in</strong>g the results, the Kahnawake community requested the researchers todevelop a diabetes prevention program targeted toward their youth, <strong>and</strong> this became the KahnawakeSchools Diabetes Prevention Project (KSDPP), which promotes program ownership <strong>and</strong> communitycapacity build<strong>in</strong>g while still respect<strong>in</strong>g Mohawk cultures <strong>and</strong> traditions (Macaulay et al., 1997, as cited <strong>in</strong>Potv<strong>in</strong> et al., 2003): “The KSDPP was designed as a participatory project that <strong>in</strong>volved partnerships, <strong>and</strong>shared expertise, <strong>and</strong> knowledge. The KSDPP partnership <strong>in</strong>cludes three groups: the people of theKanien’keha:ka community of Kahnawake, community-based researchers, <strong>and</strong> academic researchers”(Potv<strong>in</strong> et al., 2003, p. 1297)This study evolved <strong>in</strong>to a long-term project that has recently received <strong>in</strong>frastructure funds <strong>in</strong> order todevelop a Kahnawake-based diabetes prevention center. The project was deemed successful beca<strong>use</strong>of four ma<strong>in</strong> po<strong>in</strong>ts. First, community groups <strong>and</strong> academic researchers established an equalpartnership. Second, a research ethics code that was developed collaboratively by community members<strong>and</strong> academic researchers was <strong>in</strong>fluential <strong>in</strong> merg<strong>in</strong>g the partnership. Third, <strong>in</strong>tervention <strong>and</strong> researchactivities re<strong>in</strong>forced each other <strong>and</strong> were complementary. Fourth, all program components were<strong>in</strong>tegrated <strong>in</strong>to an active negotiated process, thus allow<strong>in</strong>g the KSDPP to survive long term. This f<strong>in</strong>al<strong>and</strong> important po<strong>in</strong>t was made:Although strong <strong>and</strong> essential to the project, the research component was neverconceived of as the project’s driv<strong>in</strong>g force. Researchers were there to observe,<strong>and</strong> learn from, the experience this community was sometimes will<strong>in</strong>g, <strong>and</strong>sometimes less will<strong>in</strong>g, to have submitted to the reflexive process of research.This was partly responsible for creat<strong>in</strong>g an environment that was highlyresponsive to the synergy that emerged from the co-presence of both research<strong>and</strong> <strong>in</strong>tervention components. Capitaliz<strong>in</strong>g on this synergy allowed theprogramme to be responsive to the various <strong>and</strong> evolv<strong>in</strong>g needs of the partners.Beca<strong>use</strong> each partner’s voice was heard <strong>and</strong> respected, constructivenegotiation occurred allow<strong>in</strong>g transformations <strong>in</strong> the programme <strong>in</strong> a way thatdid not threaten its identity. On the contrary, these transformations were seen ascreat<strong>in</strong>g new opportunities for the programme to help the community develop itsown vision of health. (Potv<strong>in</strong> et al., 2003, p. 1303)Challenges of the CommunityCommunity-Based Participatory Research ModelThe benefits of us<strong>in</strong>g the CBPR model would seem to outweigh any negatives associated with themodel, yet the primary challenges of the CBPR model has to do with the allocation of resources. Nearlyall <strong>studies</strong> us<strong>in</strong>g community-based models brought up fund<strong>in</strong>g problems, time constra<strong>in</strong>ts, <strong>and</strong> otherCase Studies <strong>in</strong> Tribal Data Collection <strong>and</strong> Use<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association22


esource issues as challenges. In a longitud<strong>in</strong>al study, important research activities such as <strong>data</strong><strong>collection</strong> were suspended for a year due to a loss of fund<strong>in</strong>g (Potv<strong>in</strong> et al., 2003). Manag<strong>in</strong>g longdistancecommunications with limited resources was also challeng<strong>in</strong>g for the Quigley et al. (2000) studyon manag<strong>in</strong>g hazardous material, <strong>in</strong> which the academic researchers were <strong>in</strong> Massach<strong>use</strong>tts <strong>and</strong> theNative community was <strong>in</strong> Nevada. This study also had challenges due to compet<strong>in</strong>g responsibilities; allmembers of the research project had to fulfill important obligations to other <strong>in</strong>stitutions they wereaffiliated with while still committ<strong>in</strong>g themselves to manag<strong>in</strong>g the hazardous material project.Another challenge posed by work<strong>in</strong>g with American <strong>Indian</strong>/Alaska Native communities is the requirementthat research does not harm them. Sharp <strong>and</strong> Foster (2002) has argued that the risks of harm<strong>in</strong>g acommunity are often difficult for non-Native researchers to discern beforeh<strong>and</strong>.Studies <strong>in</strong>volv<strong>in</strong>g genetic markers found more commonly <strong>in</strong> American <strong>Indian</strong><strong>and</strong> Alaska Native populations can disrupt the social equilibrium that existswith<strong>in</strong> a community by reveal<strong>in</strong>g that participants <strong>and</strong> their families are more“European” <strong>in</strong> ancestry than they themselves believe. Such f<strong>in</strong>d<strong>in</strong>gs have socialconsequences <strong>in</strong> many <strong>in</strong>digenous communities, as the ability to occupy apolitical office often is cont<strong>in</strong>gent upon establish<strong>in</strong>g one’s ancestry assufficiently “Native” (Strong <strong>and</strong> VanW<strong>in</strong>kle, 1996). Here too, it is unlikely thatresearchers who are not themselves members of these communities couldanticipate such research-related risks or fully appreciate their significance forthe community <strong>and</strong> its members. (Sharp & Foster, 2002, pp. 146–147)Other researchers have also po<strong>in</strong>ted out that primary challenges <strong>in</strong>cluded the “time-consum<strong>in</strong>g nature ofthe negotiation process, the absence of a common language, <strong>and</strong> the need to design research activitiesthat both respect people’s real preoccupations <strong>and</strong> are compatible with a goal of empower<strong>in</strong>g thecommunity, promot<strong>in</strong>g healthy lifestyle, improv<strong>in</strong>g self-esteem” (Potv<strong>in</strong> et al., 2003, p. 1302).One study (Hudson & Taylor-Henley, 2001) that aimed to implement a culturally appropriate <strong>and</strong>participatory research project with American <strong>Indian</strong>/Alaska Native communities addressed manychallenges fac<strong>in</strong>g non-Native researchers <strong>and</strong> is worthwhile as a “lessons learned” piece. An important<strong>case</strong> <strong>in</strong> po<strong>in</strong>t is that the non-Native scholars of this project were determ<strong>in</strong>ed to provide an immediatebenefit or “pay-off” to the community by hir<strong>in</strong>g local community people to prepare the community for theresearcher’s visits. However, this admittedly small effort by the researchers did not result <strong>in</strong> any sort ofsubstantial benefit to the community. The researchers also seemed to have failed to adequately preparethe local community people for their roles <strong>in</strong> the research process. Further, an additional component ofthe research design was to hire the local community for cater<strong>in</strong>g/food preparation, but the orig<strong>in</strong>al pl<strong>and</strong>id not pan out as envisioned by the researchers:Case Studies <strong>in</strong> Tribal Data Collection <strong>and</strong> Use<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association23


The plan to spend money <strong>in</strong> the communities on food <strong>and</strong> food preparation wasaccepted <strong>in</strong> only two of the sixteen visits. Ironically, sadly, but also amus<strong>in</strong>gly,the team found itself load<strong>in</strong>g boxes of greasy fast food purchased <strong>in</strong> W<strong>in</strong>nipegonto the small plane. These are foods unavailable <strong>in</strong> most of the communities<strong>and</strong> <strong>in</strong> none of the fly-<strong>in</strong> communities. Once aga<strong>in</strong> the cash did not flow <strong>in</strong>to thecommunities, but <strong>in</strong>to the profits of a mult<strong>in</strong>ational fast food cha<strong>in</strong>. The researchteam had determ<strong>in</strong>ed to spend the money <strong>in</strong> the community but the localorganizers <strong>and</strong> participants wanted someth<strong>in</strong>g they could not regularly obta<strong>in</strong> astheir payoff. The <strong>tribal</strong> council had encountered the request for fast food <strong>in</strong> thepast <strong>and</strong> viewed the research team’s compliance with local requestsappropriate. (Hudson & Taylor-Henley, 2001, pp. 97–98)Hudson <strong>and</strong> Taylor-Henley (2001) po<strong>in</strong>t out that although it is important to obta<strong>in</strong> <strong>tribal</strong> council approval,it is also important to gauge the nature of the relationship between the <strong>tribal</strong> councils <strong>and</strong> localcommunities. Even with <strong>tribal</strong> council approval, the research team had to work diligently with localcommunities to engage their participation <strong>in</strong> the research project. Additionally, the research team waschallenged with “if only” responses dur<strong>in</strong>g focus groups’ discussions on child welfare; <strong>in</strong> other words,discussion would stop at “‘if only’ the young people would listen to the elders then all would be well. Allwould be similarly well ‘if only’ parents would stop dr<strong>in</strong>k<strong>in</strong>g (or go<strong>in</strong>g to b<strong>in</strong>go, etc.)” (p. 102).Researchers had to press respondents to move beyond the “if only’s” <strong>in</strong> order to come up with <strong>tribal</strong>lybased solutions.The f<strong>in</strong>al challenge of the community-based model <strong>in</strong>volves the important step of researchers follow<strong>in</strong>gup with research results for the American <strong>Indian</strong>/Alaska Native communities.The report was placed <strong>in</strong> the h<strong>and</strong>s of the steer<strong>in</strong>g committee <strong>and</strong> the directorsof the child <strong>and</strong> family service for distribution to the communities. This ended thecontracted responsibilities of the team, but nevertheless left it with some senseof <strong>in</strong>completeness … No requests for follow-up brief<strong>in</strong>g or of consultations witheach community were forthcom<strong>in</strong>g, so the debate with<strong>in</strong> the team was whetheror not to offer it—an offer which would likely have been accepted, provid<strong>in</strong>gthere were no budgetary implications. In the end the team did noth<strong>in</strong>g. This wasnot so much a result of a pr<strong>in</strong>cipled decision based on the value of non<strong>in</strong>terferenceor First Nations control, but beca<strong>use</strong> funds were depleted, time was<strong>in</strong> short supply, <strong>and</strong> the team had each moved on to other commitments <strong>and</strong>projects. (Hudson & Taylor-Henley, 2001, p. 103)This study reported that the researchers applied the culturally appropriate participatory model, but itseems a critical miss<strong>in</strong>g feature <strong>in</strong> their application of the model was the lack of strong communityCase Studies <strong>in</strong> Tribal Data Collection <strong>and</strong> Use<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association24


<strong>in</strong>volvement. It appears that the researchers drove the primary research process with small gestures of“pay-off” directed toward the communities, <strong>and</strong>, as a result, community members did not obta<strong>in</strong> anysignificant skills. Ultimately, almost no capacity build<strong>in</strong>g occurred, <strong>and</strong> the project just ended with theh<strong>and</strong><strong>in</strong>g over of the report. What was envisioned as research us<strong>in</strong>g the participatory research model, fellfar short of its goal.ConclusionsWhether a researcher or <strong>data</strong> collector employs a variation of the Community-Based ParticipatoryResearch (CBPR) model or not, there are important th<strong>in</strong>gs for these <strong>in</strong>dividuals to keep <strong>in</strong> m<strong>in</strong>d whenwork<strong>in</strong>g with American <strong>Indian</strong>s/Alaska Natives. Even as the number of American <strong>Indian</strong>s/Alaska Nativeswith advanced degrees is <strong>in</strong>creas<strong>in</strong>g, American <strong>Indian</strong>/Alaska Native communities will cont<strong>in</strong>ue todepend on non-Native researchers for some research needs (Ambler 1997). In response, <strong>tribal</strong> councilsare also <strong>in</strong>creas<strong>in</strong>g their control over the research that is conducted on their <strong>tribal</strong> members byestablish<strong>in</strong>g a formal review process for research requests orig<strong>in</strong>at<strong>in</strong>g from both non-Natives <strong>and</strong>American <strong>Indian</strong>s/Alaska Natives (Swisher, 1993; Nason, 1996). For example, the “Apache policy alsostates their objections to the possession, public exhibition, scientific study, destructive analysis, or other<strong>in</strong>appropriate <strong>use</strong> of Apache cultural property (except as expressly permitted by the concerned tribe orwhen essential to a crim<strong>in</strong>al <strong>in</strong>vestigation)” (Nason, 1996, p. 1). In essence, the relationship haschanged forever:Researchers who make brief visits <strong>and</strong> then leave are no longer welcome,especially when their research benefits only an <strong>in</strong>dividual agenda or an outside<strong>in</strong>stitutional agenda. Native people <strong>in</strong> the United States are among the mostresearched people <strong>in</strong> the world. Outsiders have studied everyth<strong>in</strong>g—ourreligions, our hunt<strong>in</strong>g practices, our sexual lives, <strong>and</strong> our health <strong>and</strong> education.Very little of that research has benefited us. (Crazy Bull, 1997a, p. 1)Research with American <strong>Indian</strong>/Alaska Native communities should have a purpose that extends beyondthe needs of the <strong>in</strong>vestigat<strong>in</strong>g researchers. This is significant beca<strong>use</strong> even though American<strong>Indian</strong>s/Alaska Natives have been much researched <strong>in</strong> the past <strong>and</strong> little of this has benefited ourcommunities, the future holds a great promise for prospective research endeavors:Native American people are no longer will<strong>in</strong>g to be just subjects of research.Research that is deemed unethical by the people who are the participants putsall of social science at risk. It jeopardizes the credibility of the work, <strong>and</strong>perhaps most importantly, the access to collectivities <strong>and</strong> <strong>in</strong>dividuals who maystill have much to teach us. (Piquemal, 2001, p. 77).Case Studies <strong>in</strong> Tribal Data Collection <strong>and</strong> Use<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association25


Responsibilities of Researchers of American <strong>Indian</strong>s/Alaska NativesConsider<strong>in</strong>g the past research experiences of Native people with non-Native researchers, we must workrigorously to ga<strong>in</strong> <strong>and</strong> keep the trust, goodwill, <strong>and</strong> cooperation of the American <strong>Indian</strong>/Alaska Native<strong>in</strong>dividual, tribe, group, <strong>and</strong>/or population through all phases of the research process. It is especiallyimportant to <strong>in</strong>vest significant amounts of time to establish <strong>and</strong> keep good relationships well beforeresearch proposals are written. The follow<strong>in</strong>g is an example of the protocol of an American <strong>Indian</strong>/AlaskaNative researcher work<strong>in</strong>g with her own community:Follow<strong>in</strong>g <strong>in</strong>digenous culture protocol, before any formal academic preparationwas done for the study, the researcher talked to various elders, communitypeople, <strong>and</strong> some of the healers. This process was performed to ga<strong>in</strong>permission to conduct the research <strong>and</strong> access approval to record the researchf<strong>in</strong>d<strong>in</strong>gs. This was compulsory as <strong>in</strong>digenous knowledge is traditionallytransmitted orally (Crow 1993) through storytell<strong>in</strong>g (Simpson 2000). (Struthers,2001, p. 129)Researchers should ask themselves the question “what is to be ga<strong>in</strong>ed or lost through the publication ofthe research f<strong>in</strong>d<strong>in</strong>gs?” It is important to identify who ga<strong>in</strong>s <strong>and</strong> who loses <strong>in</strong> the process of thisquestion<strong>in</strong>g. As an example, the author, an enrolled member of the Navajo Nation, had some seriousworries over whether it was appropriate to add to the deficit-based view of American <strong>Indian</strong>s/AlaskaNatives with the publication of the Native American Kids 2001 <strong>and</strong> Native American Kids 2002 reports(Goodluck & Willeto, 2001; Willeto, 2002) beca<strong>use</strong> the f<strong>in</strong>d<strong>in</strong>gs <strong>in</strong>dicated that American <strong>Indian</strong>s/AlaskaNative children <strong>and</strong> youth generally fared much worse than all children <strong>and</strong> youth <strong>in</strong> 9 of the 10 wellbe<strong>in</strong>g<strong>in</strong>dicators. Although the project has enhanced the author’s professional reputation, moreimportantly, it was not only her hope, but the hope of the <strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association(NICWA) <strong>and</strong> Casey Family Programs (a private foundation that funded the research) that American<strong>Indian</strong>/Alaska Native child welfare advocates would <strong>use</strong> these empirically-based f<strong>in</strong>d<strong>in</strong>gs to advocate for<strong>in</strong>creased resources directed at <strong>in</strong>creas<strong>in</strong>g American <strong>Indian</strong>/Alaska Native children’s well-be<strong>in</strong>g. Theauthor has begun to receive feedback from American <strong>Indian</strong>s/Alaska Natives who have <strong>use</strong>d the reports<strong>in</strong> a variety of ways. Some have <strong>use</strong>d the well-be<strong>in</strong>g <strong>data</strong> to design programs for their <strong>tribal</strong> socialservices offices, <strong>and</strong> others are cit<strong>in</strong>g the reports <strong>in</strong> their theses <strong>and</strong> dissertations.Another important aspect of conduct<strong>in</strong>g successful research with American <strong>Indian</strong>s/Alaska Native is tonot misrepresent the community. It is imperative for a researcher to work with the community to ensurethat the research results are not misappropriated.As researchers, we usually want the freedom to set our own research agenda,but our fellow <strong>tribal</strong> citizens <strong>and</strong>/or our <strong>tribal</strong> government may want to restrict thedistribution of controversial research results, Dr. Peacock says. “We need toCase Studies <strong>in</strong> Tribal Data Collection <strong>and</strong> Use<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association26


carefully balance <strong>tribal</strong> sovereignty with <strong>in</strong>dividual responsibility <strong>and</strong> the public’sright to know. The right to know is the basis for our democracy.” At the sametime, he says, “The question on what should be communicated <strong>and</strong> to who is asmuch an ethical decision as a political one…. One of the canons of goodresearch is that it should never hurt the people studied.” (Crazy Bull, 1997a, p.5)Beca<strong>use</strong> excellent lists of important protocols <strong>and</strong> resources already exist (see Mihesuah, 1993; Nason,1996; Ambler, 1997; Christensen & Peacock, 1997; Crazy Bull, 1997a, 1997b; Davis et al., 2002), (seealso Piquemal, 2001 for a discussion on free <strong>and</strong> <strong>in</strong>formed consent issues), readers are encouraged toreference these works when work<strong>in</strong>g with American <strong>Indian</strong>/Alaska Native communities. Additionally,Ericksen (1996) addresses some problems <strong>in</strong> sampl<strong>in</strong>g the American <strong>Indian</strong>/Alaska Native populationthat may aid researchers <strong>in</strong> their future quantitative research designs. One last quote from Crazy Bullsums up the situation nicely: “Generally, the most welcome researcher is already part of the community,foc<strong>use</strong>s on solutions, <strong>and</strong> underst<strong>and</strong>s that research is a lifelong process” (1997a, p. 3).Remember that we are <strong>in</strong> a revolutionary state <strong>in</strong> which sovereign <strong>tribal</strong> nations are <strong>in</strong>creas<strong>in</strong>gly tak<strong>in</strong>gcontrol of research agendas. Revolutions are never easy. Secur<strong>in</strong>g <strong>tribal</strong> approval, design<strong>in</strong>g researchthat also meets the needs of American <strong>Indian</strong>s/Alaska Natives, <strong>and</strong> form<strong>in</strong>g partnerships with societiesthat emphasize non-l<strong>in</strong>ear philosophies <strong>and</strong> worldviews are challeng<strong>in</strong>g tasks. This requires time,patience, open m<strong>in</strong>ds, flexibility, <strong>and</strong> substantial resources. Research practices that serve the multiplepurposes of improv<strong>in</strong>g the lives of American <strong>Indian</strong>s/Alaska Natives, affirm<strong>in</strong>g <strong>tribal</strong> sovereignty,<strong>in</strong>creas<strong>in</strong>g American <strong>Indian</strong>/Alaska Native research capacities, contribut<strong>in</strong>g to science, <strong>and</strong> further<strong>in</strong>gthe careers of American <strong>Indian</strong>/Alaska Native <strong>and</strong> non-Native scholars are becom<strong>in</strong>g realities.Case Studies <strong>in</strong> Tribal Data Collection <strong>and</strong> Use<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association27


CHAPTER 2: INTRODUCTION TO THE CASE STUDIESIntroductionThis research project, funded by the Annie E. Casey Foundation, was designed to exam<strong>in</strong>e five different<strong>case</strong> situations <strong>in</strong>volv<strong>in</strong>g <strong>tribal</strong> communities <strong>in</strong> which <strong>data</strong> <strong>collection</strong> <strong>and</strong> <strong>use</strong>, is an emerg<strong>in</strong>g issue. Itexplores the impact of not hav<strong>in</strong>g reliable <strong>data</strong>, the barriers to collect<strong>in</strong>g <strong>data</strong>, <strong>and</strong> the power of theeffective <strong>use</strong> of <strong>data</strong>. The purpose of this report is to <strong>in</strong>form the national dialogue about the ways thattribes <strong>and</strong> American <strong>Indian</strong>/Alaska Native organizations value, collect, <strong>and</strong> <strong>use</strong> <strong>data</strong> as a resource. Thisstudy takes a broad look at <strong>data</strong> <strong>collection</strong> <strong>and</strong> <strong>use</strong>, <strong>in</strong>clud<strong>in</strong>g national, regional, <strong>and</strong> state statistics;community profile demographics; <strong>and</strong>, f<strong>in</strong>ally, program services <strong>and</strong> utilization <strong>data</strong>. The study isfoc<strong>use</strong>d on how the subjects of the <strong>case</strong> <strong>studies</strong> are view<strong>in</strong>g <strong>and</strong> us<strong>in</strong>g <strong>data</strong> <strong>and</strong> how <strong>data</strong> are impact<strong>in</strong>gtheir services <strong>and</strong> communities.The project has been able to look at <strong>data</strong> issues among several diverse communities <strong>and</strong> to identifyemerg<strong>in</strong>g themes across <strong>Indian</strong> Country. Responses to the possibility of <strong>tribal</strong> <strong>data</strong> <strong>collection</strong> are asdiverse as the numerous tribes that exist <strong>in</strong> the United States today. This report only beg<strong>in</strong>s to <strong>in</strong>form thefield of these issues. Given the complexity of the issue, this is a critical first step <strong>in</strong> underst<strong>and</strong><strong>in</strong>g <strong>and</strong>describ<strong>in</strong>g <strong>tribal</strong> <strong>data</strong> <strong>collection</strong> <strong>and</strong> <strong>use</strong>.Both historically <strong>and</strong> today, research efforts <strong>in</strong> American <strong>Indian</strong>/Alaska Native communities haveprimarily followed a pattern <strong>in</strong> which American <strong>Indian</strong>s/Alaska Natives are research subjects provid<strong>in</strong>gvaluable <strong>data</strong> that ultimately rarely directly benefited their communities. Instead, the ma<strong>in</strong>streamacademic society has profited from important American <strong>Indian</strong>/Alaska Native contributions to theirresearch (Crazy Bull, 1997) <strong>and</strong> has not shared <strong>data</strong> with tribes <strong>in</strong> a way that can be <strong>use</strong>ful to them.More recently, these experiences have often resulted <strong>in</strong> the unwill<strong>in</strong>gness of <strong>tribal</strong> communities toparticipate <strong>in</strong> critical scholarly efforts. Many American <strong>Indian</strong>/Alaska Native communities have seen <strong>data</strong><strong>use</strong>d aga<strong>in</strong>st them, <strong>and</strong> others have found themselves left out of policy decisions as a result of smallpopulations fall<strong>in</strong>g <strong>in</strong>to the <strong>in</strong>visible category of “other.” This set of circumstances has contributed to aserious shortage of <strong>data</strong> on American <strong>Indian</strong>/Alaska Native children <strong>and</strong> families <strong>and</strong> has resultedresult<strong>in</strong>g <strong>in</strong> <strong>in</strong>adequate policies <strong>and</strong> fund<strong>in</strong>g at the <strong>tribal</strong>, state, <strong>and</strong> federal levels.PurposeThe purpose of this project is to analyze <strong>and</strong> document the effects a lack of <strong>data</strong> has on American<strong>Indian</strong>/Alaska Native children. The project also identifies other important issues that cont<strong>in</strong>ue tonegatively impact the <strong>collection</strong> of <strong>data</strong> <strong>in</strong> these sett<strong>in</strong>gs, <strong>and</strong> provides recommendation on what tribes<strong>and</strong> American <strong>Indian</strong>/Alaska Native organizations can do now to effectively collect <strong>and</strong> <strong>use</strong> <strong>data</strong> tocorrect the problems the currently exist. While some tribes have become <strong>in</strong>terested <strong>in</strong> <strong>tribal</strong> <strong>data</strong>Case Studies <strong>in</strong> Tribal Data Collection <strong>and</strong> Use<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association28


<strong>collection</strong>, the shift toward tribes’ <strong>data</strong> <strong>collection</strong> for their own purposes is still <strong>in</strong> its <strong>in</strong>fancy stage. Wehope that this report will be widely circulated <strong>and</strong> <strong>use</strong>d as an awareness-build<strong>in</strong>g tool to further themovement to improve <strong>tribal</strong> <strong>collection</strong> <strong>and</strong> <strong>use</strong> of <strong>data</strong>.MethodologyUnder this project, the <strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association (NICWA) conducted qualitativeresearch us<strong>in</strong>g a <strong>case</strong> study design to report on five <strong>case</strong> situations. The authors set out to explore <strong>and</strong>document the impact of <strong>in</strong>adequate <strong>data</strong> <strong>collection</strong> <strong>and</strong> report<strong>in</strong>g on the well-be<strong>in</strong>g of American<strong>Indian</strong>/Alaska Native children. However, dur<strong>in</strong>g the course of the study, we also found consistent effortsto collect <strong>and</strong> <strong>use</strong> <strong>data</strong> effectively. This report documents these efforts, the important contributionsbe<strong>in</strong>g made across the sites, <strong>and</strong> the cont<strong>in</strong>u<strong>in</strong>g barriers to effective <strong>collection</strong> <strong>and</strong> <strong>use</strong> of <strong>data</strong>.A <strong>case</strong> study design was chosen beca<strong>use</strong> it is an effective way to tell a story. Case <strong>studies</strong> allow aresearcher to explore <strong>and</strong> report on the conditions or experiences of a particular social group throughcross-site, comparative, <strong>and</strong> multi-unit analysis (Creswell, 1998). Us<strong>in</strong>g a <strong>case</strong> study approachdocuments the need for tribes <strong>and</strong> states to effectively collect <strong>and</strong> <strong>use</strong> <strong>data</strong> on American <strong>Indian</strong>/AlaskaNative children; exemplifies what tribes <strong>and</strong> American <strong>Indian</strong>/Alaska Native organizations are do<strong>in</strong>g with<strong>data</strong>; <strong>and</strong> demonstrates the challenges <strong>and</strong> struggles they face <strong>in</strong> the process.Our <strong>case</strong> study process employed both <strong>in</strong>dividual key <strong>in</strong>formant <strong>in</strong>terviews as well as the documentcontent analysis methodologies, with significant fact f<strong>in</strong>d<strong>in</strong>g prior to consult<strong>in</strong>g key <strong>in</strong>formants. This factf<strong>in</strong>d<strong>in</strong>gprocess usually consists of both a literature review <strong>and</strong> a verbal <strong>in</strong>quiry. Throughout this process,researchers determ<strong>in</strong>ed what the <strong>case</strong> study sought to document, what is generally through about thesubject, <strong>and</strong> who with<strong>in</strong> the scope of study “holds the knowledge.” The researcher then structured key<strong>in</strong>formant <strong>in</strong>terviews to help def<strong>in</strong>e what is known about <strong>tribal</strong> <strong>data</strong> <strong>collection</strong> <strong>and</strong> <strong>use</strong> <strong>and</strong> to learn moreabout the impact of not hav<strong>in</strong>g <strong>data</strong>. This approach was designed to reveal perceptions <strong>and</strong> concrete<strong>in</strong>formation about the role of reliable <strong>data</strong> <strong>in</strong> policy development <strong>and</strong> resource allocations <strong>and</strong> to providean emerg<strong>in</strong>g picture that both <strong>in</strong>forms the field <strong>and</strong> po<strong>in</strong>ts to the need for further research <strong>in</strong> this criticalarea.NICWA selected the five <strong>case</strong> <strong>studies</strong> based on factors relat<strong>in</strong>g to a matrix of geographic region,jurisdictions, organization types, fund<strong>in</strong>g, policy issues, <strong>and</strong> service populations <strong>in</strong> order to achieve thegreatest diversity possible across the five sites. The <strong>case</strong> <strong>studies</strong> <strong>in</strong>cluded three <strong>tribal</strong> governments, oneurban American <strong>Indian</strong>/Alaska Native community, <strong>and</strong> one multi-<strong>tribal</strong> consortium agency, spann<strong>in</strong>greservation, urban, <strong>and</strong> county-wide jurisdictions. For <strong>in</strong>clusion <strong>in</strong> the study, the sites were screenedthrough prelim<strong>in</strong>ary <strong>in</strong>terviews regard<strong>in</strong>g their <strong>in</strong>terest, will<strong>in</strong>gness, <strong>and</strong> ability to demonstrate the impactof not hav<strong>in</strong>g effective <strong>and</strong> reliable <strong>data</strong> <strong>collection</strong>.Case Studies <strong>in</strong> Tribal Data Collection <strong>and</strong> Use<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association29


Scope of work ranged from local, to statewide, to national with negative impacts experienced at alllevels. Service population areas <strong>in</strong>cluded child welfare, juvenile justice, youth services, children’s mentalhealth, substance ab<strong>use</strong>, family support, <strong>and</strong> child ab<strong>use</strong> prevention. Policy topics <strong>in</strong>cluded access tofederal fund<strong>in</strong>g streams, private philanthropy, state <strong>and</strong> county resource allocation, <strong>and</strong> <strong>tribal</strong> budget<strong>in</strong>g<strong>and</strong> program policies.Documents reviewed for this study <strong>in</strong>cluded published reports, program reports, fund<strong>in</strong>g proposals,newsletters, <strong>and</strong> advocacy documents. Documents were identified dur<strong>in</strong>g <strong>in</strong>terviews <strong>and</strong> were providedby the sites as representative of their <strong>use</strong> of <strong>data</strong> or expressive of their need for or lack of reliable <strong>data</strong>.Case Studies <strong>in</strong> Tribal Data Collection <strong>and</strong> Use<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association30


CHAPTER 3: FEATHER RIVER BEHAVIORAL HEALTH SERVICESCase Study Subject ProfileFeather River Tribal Health Organization has provided health care services to American <strong>Indian</strong>s/AlaskaNatives <strong>in</strong> the Northern California counties of Butte, Yuba, <strong>and</strong> Sutter s<strong>in</strong>ce 1993. The organizationoperates two full-service health care cl<strong>in</strong>ics <strong>in</strong> Oroville <strong>and</strong> Yuba City <strong>and</strong> is under the guidance of theboard of directors, which consists of elected officials from the Berry Creek, Mooretown, <strong>and</strong> EnterpriseRancherias. The Feather River Tribal Health Organization provides medical, dental, health outreach,mental health, substance ab<strong>use</strong>, <strong>and</strong> other related services. The Oroville location also has a seniorcenter that provides transportation <strong>and</strong> lunches for seniors every bus<strong>in</strong>ess day. The mission of theFeather River Tribal Health Organization is to enhance the function<strong>in</strong>g of <strong>in</strong>dividuals, families, <strong>and</strong>dist<strong>in</strong>ct American <strong>Indian</strong>/Alaska Native communities liv<strong>in</strong>g with<strong>in</strong> its catchment area.The Feather River Tribal Health Organization represents a grow<strong>in</strong>g trend <strong>in</strong> <strong>Indian</strong> Country of multi-<strong>tribal</strong>consortiums form<strong>in</strong>g non-profit organizations to achieve an economy of scale not possible for smalltribes. Feather River was selected as a study site due to its recent achievements result<strong>in</strong>g from acomprehensive effort to collect <strong>and</strong> <strong>use</strong> <strong>data</strong>. These efforts <strong>in</strong>cluded <strong>in</strong>-depth community conversationsabout <strong>data</strong> as well as extensive work with outside technical assistance <strong>and</strong> fund<strong>in</strong>g. This projectselected Feather River Behavioral Health (FRBH) Services beca<strong>use</strong> the department has been an <strong>in</strong>tegralpart of the process of the <strong>data</strong> <strong>collection</strong> <strong>and</strong> <strong>use</strong> at this organization. FRBH is one department with<strong>in</strong> theFeather River Tribal Health Organization. The hope of this study was to record lessons learned <strong>in</strong> theorganization’s <strong>data</strong> <strong>collection</strong> process <strong>and</strong> to exam<strong>in</strong>e the impact of mov<strong>in</strong>g from hav<strong>in</strong>g little or no <strong>data</strong>to hav<strong>in</strong>g <strong>and</strong> us<strong>in</strong>g <strong>data</strong> as a resource.F<strong>in</strong>d<strong>in</strong>gsUnderly<strong>in</strong>g Values about Data CollectionThe underly<strong>in</strong>g values about <strong>data</strong> at FRBH have evolved from a historic lack of <strong>data</strong> <strong>and</strong> result<strong>in</strong>gnegative impacts expressed by one <strong>in</strong>terviewee, “We came to the realization that we had families dy<strong>in</strong>gbeca<strong>use</strong> of no <strong>data</strong>.” Before the late 1990s, FRBH’s experiences with <strong>data</strong> were nearly all negative.FRBH staff felt they knew their families, they had <strong>case</strong> files, <strong>and</strong> they knew the extent of the problems.They knew that services were needed <strong>and</strong> that almost none were available. However, when they tooktheir stories to the county, state, or federal government seek<strong>in</strong>g fund<strong>in</strong>g, they were told that their<strong>in</strong>formation was “anecdotal,” “unreliable,” or “<strong>in</strong>significant.” FRBH statistics were either left out ofcountywide or state <strong>studies</strong> or counted at “other” when <strong>in</strong>cluded <strong>in</strong> <strong>studies</strong>, thus mak<strong>in</strong>g it difficult toaccess specific <strong>data</strong> about their communities <strong>and</strong> service populations.Case Studies <strong>in</strong> Tribal Data Collection <strong>and</strong> Use<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association31


By the late 1990s, FRBH knew <strong>data</strong> <strong>collection</strong> <strong>and</strong> <strong>use</strong> had to become a priority, <strong>and</strong> several key eventsbrought about this significant change. They were successful <strong>in</strong> secur<strong>in</strong>g a Circles of Care grant from theSubstance Ab<strong>use</strong> <strong>and</strong> Mental Health Services Adm<strong>in</strong>istration (SAMHSA). At the same time, a new leaderwith an <strong>in</strong>terest <strong>in</strong> <strong>data</strong> was hired, <strong>and</strong> an outside evaluator was hired on contract. The Circles of Caregrants require an extensive needs assessment <strong>and</strong> evaluation component, <strong>in</strong> addition to a strong family<strong>and</strong> community <strong>in</strong>volvement component. Be<strong>in</strong>g a recipient of a Circles of Care grant contributed to theformation <strong>and</strong> articulation of a common direction regard<strong>in</strong>g <strong>data</strong> <strong>and</strong> the development of a new <strong>and</strong>positive value placed on <strong>data</strong>.Dur<strong>in</strong>g our <strong>in</strong>terviews at FRBH, <strong>data</strong> were described with words such as “<strong>in</strong>terest<strong>in</strong>g,” “excit<strong>in</strong>g,” “new<strong>in</strong>sights,” <strong>and</strong> “powerful.” Data <strong>collection</strong> was described as part of a larger vision held by leadership. Itwas said that <strong>data</strong> “tell a story <strong>in</strong> a way that makes sense to people outside the community.” Leadershipdescribed <strong>data</strong> as a “resource” to be <strong>use</strong>d to “do someth<strong>in</strong>g for others.” Evaluation was described as“expensive but essential to hav<strong>in</strong>g <strong>data</strong>.”FRBH has created a “community value on research” us<strong>in</strong>g a “communications approach” with extensive<strong>use</strong> of focus groups, community events, grassroots <strong>data</strong> gatherers, <strong>and</strong> shared results <strong>in</strong> newsletters.Staff refer to their <strong>data</strong> <strong>collection</strong> <strong>and</strong> <strong>use</strong> as “community driven” <strong>and</strong> dependent on an “importantrelationship” between evaluators <strong>and</strong> community members. One <strong>in</strong>terviewee related that when theprogram does not have <strong>data</strong>, it “becomes isolated for the people it serves.”FRBH’s policies regard<strong>in</strong>g the <strong>collection</strong> <strong>and</strong> <strong>use</strong> of <strong>data</strong> have been driven by the Circles of Care project<strong>and</strong> the Institutional Review Board (IRB) process, which was part of the <strong>data</strong> gather<strong>in</strong>g <strong>and</strong> preparationfor accreditation. The IRB process also requires compliance with the Health Insurance Portability <strong>and</strong>Accountability Act (HIPAA) of 1996. HIPAA is a law that sets national st<strong>and</strong>ards to protect the privacy ofpersonal health <strong>in</strong>formation. Written policies are an <strong>in</strong>dication that the values expressed about <strong>data</strong> arebe<strong>in</strong>g <strong>in</strong>stitutionalized.F<strong>in</strong>ally, <strong>in</strong>terviewees expressed a strong value on the <strong>use</strong> of an outside evaluator for both technicalexpertise <strong>and</strong> credibility. The relationship was described with the follow<strong>in</strong>g language: “close work<strong>in</strong>grelationship,” “participant,” “trust,” “advocate,” <strong>and</strong> “more than an evaluator.” The <strong>use</strong> of an outsideevaluator was reported as a way to “comb<strong>in</strong>e the knowledge of the community with the credibility of aPhD.” It was reported that one of the positive events <strong>in</strong> the community was to f<strong>in</strong>d an evaluator who“knows the community,” “walks <strong>in</strong> both worlds,” “values us,” <strong>and</strong> “does not judge.” The staff respectsthe evaluator’s ability to “crunch numbers” <strong>and</strong> give “credibility” to their story.Case Studies <strong>in</strong> Tribal Data Collection <strong>and</strong> Use<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association32


Data SystemsFRBH has had to develop its own <strong>data</strong> system us<strong>in</strong>g the Statistical Package for Social Sciences (SPSS)for “surveys, <strong>data</strong> entry, evaluation, <strong>and</strong> analysis.” Multiple <strong>data</strong> systems are <strong>use</strong>d beca<strong>use</strong> severalfund<strong>in</strong>g sources require <strong>data</strong> report<strong>in</strong>g. These fund<strong>in</strong>g sources <strong>use</strong> different <strong>data</strong> <strong>collection</strong> systems thatare not responsive to <strong>data</strong> manipulation or local analysis. As a result, some <strong>data</strong> are collected twice.The contract evaluator is responsible for the development of <strong>data</strong> gather<strong>in</strong>g forms, cod<strong>in</strong>g systems, <strong>data</strong>storage <strong>and</strong> backup, <strong>data</strong> analysis, <strong>and</strong> report writ<strong>in</strong>g. FRBH staff are responsible for <strong>data</strong> entry <strong>and</strong> thetransfer of <strong>data</strong> to the outside evaluator us<strong>in</strong>g a secure electronic transfer. The federal <strong>data</strong> system forservices provided under IHS, the Resource Patient Management System (RPMS), provides some<strong>in</strong>formation on frequency <strong>and</strong> utilization. Past attempts to <strong>in</strong>tegrate <strong>data</strong> <strong>collection</strong> systems <strong>in</strong>to onecomprehensive system have not been successful.Data Relationships, Accountability, <strong>and</strong> OwnershipFRBH has no written policy <strong>and</strong> decisions about shar<strong>in</strong>g <strong>data</strong> are made on a <strong>case</strong>-by-<strong>case</strong> basis.Trust<strong>in</strong>g relationships <strong>and</strong> advocacy are key issues <strong>in</strong> decisions to share <strong>data</strong>. For example, FRBH hasfostered a positive relationship with the country <strong>and</strong> has started shar<strong>in</strong>g <strong>data</strong> with them. The directorsummed up the philosophy of <strong>data</strong> shar<strong>in</strong>g as follows, “County people always thought we wantedsometh<strong>in</strong>g; we try giv<strong>in</strong>g someth<strong>in</strong>g <strong>in</strong>stead.” Shar<strong>in</strong>g <strong>in</strong>formation with the county hasn’t been an issueas long as no identify<strong>in</strong>g <strong>in</strong>formation is provided <strong>in</strong> the <strong>data</strong> shared. The impact of this relationship isnow be<strong>in</strong>g felt. Historically, the county did not ask clients if they were American <strong>Indian</strong>/Alaska Native <strong>and</strong>did not record that <strong>data</strong>. Recently, due to the county’s relationship with FRBH, they have begun thepractice of question<strong>in</strong>g identity <strong>and</strong> have agreed to share county <strong>data</strong> with FRBH staff. The county isalso apply<strong>in</strong>g for a SAMSHA grant <strong>and</strong> us<strong>in</strong>g FRBH <strong>data</strong> as part of its application. In addition, serv<strong>in</strong>g asa consortium of tribes, the Feather River Tribal Health Organization has been <strong>in</strong> a strong position to takethe lead on <strong>data</strong> gather<strong>in</strong>g for the member tribes <strong>and</strong> shares <strong>data</strong> as needed with its members.However, receiv<strong>in</strong>g <strong>data</strong> from other sources, such as large state agencies, that collect <strong>data</strong> on American<strong>Indian</strong>s/Alaska Natives has proven to be challeng<strong>in</strong>g. Available <strong>data</strong> at the federal level <strong>in</strong> the UnitedStates have been of little value due to <strong>in</strong>accuracy <strong>and</strong> flaws <strong>in</strong> the <strong>data</strong> <strong>collection</strong> methodology, <strong>and</strong>other national <strong>data</strong> sets often do not <strong>in</strong>clude or reflect the population served by FRBH. Local agenciessuch as IHS, highway patrol, sheriff’s department, juvenile probation, <strong>and</strong> child protective services allcollect <strong>data</strong>, but there are problems with consistency <strong>in</strong> how American <strong>Indian</strong>s/Alaska Natives areidentified. F<strong>in</strong>ally, even <strong>in</strong> situations where local counties <strong>use</strong>d <strong>data</strong> <strong>in</strong> order to claim high American<strong>Indian</strong>. Alaska Native numbers so that it could access federal dollars, <strong>tribal</strong> members reported that it “feltlike we were gett<strong>in</strong>g <strong>use</strong>d a lot” beca<strong>use</strong> the county did not then provide services to the tribe.Case Studies <strong>in</strong> Tribal Data Collection <strong>and</strong> Use<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association33


Use of Data <strong>and</strong> Data as a ResourceData are be<strong>in</strong>g <strong>use</strong>d at FRBH for advocacy, fund<strong>in</strong>g development, program plann<strong>in</strong>g, <strong>and</strong> evaluation.S<strong>in</strong>ce the Circles of Care project, FRBH has moved from hav<strong>in</strong>g grassroots <strong>data</strong> to hav<strong>in</strong>g <strong>data</strong> <strong>in</strong> a formthat tells a credible story both <strong>in</strong>ternally <strong>in</strong> the community <strong>and</strong> externally to the outside world. Whereonce, few if any behavioral health services were available, now a range of services exist.AdvocacyA good example of FRBH’s <strong>use</strong> of <strong>data</strong> for advocacy <strong>in</strong>volved demonstrat<strong>in</strong>g the needs of American<strong>Indian</strong>s/Alaska Natives. A survey of professionals <strong>in</strong> the county conducted by FRBH found that the leastexperienced professionals were often left to treat the most troubled children. The county found the <strong>data</strong><strong>use</strong>ful beyond the American <strong>Indian</strong>/Alaska Native population. In another study, FRBH tracked juvenilehall arrest by ethnicity <strong>and</strong> found that American <strong>Indian</strong>/Alaska Native rates were six to seven timeshigher than the rate for non-<strong>Indian</strong>s. The results prompted a service agreement between FRBH <strong>and</strong> theJuvenile Justice Department. Interviewees said, “Beca<strong>use</strong> of the <strong>use</strong> of <strong>data</strong> <strong>in</strong> Circles of Care, FRBHbegan to be seen as a major player, <strong>and</strong> FRBH has a major impact on the county level.”Fund<strong>in</strong>g DevelopmentAll <strong>in</strong>terviewees reported that FRBH has <strong>use</strong>d <strong>data</strong> to support its efforts to develop fund<strong>in</strong>g for services.For example, three years ago FRBH made a <strong>data</strong> presentation to the county that resulted <strong>in</strong> a contractfor FRBH. That year, fund<strong>in</strong>g to other contract agencies were cut by 22%, while FRGH did not receive acontract cut. The decision was based largely on the quality of FRBH’s <strong>data</strong>. S<strong>in</strong>ce <strong>in</strong>itiat<strong>in</strong>g its efforts <strong>in</strong><strong>data</strong> <strong>collection</strong>, FRBH has grown from 3 to 22 staff members. Grants, contracts, <strong>and</strong> <strong>in</strong>ternal budgetjustification requests have benefited from <strong>in</strong>creased <strong>use</strong> of <strong>data</strong>. FRGH is currently collaborat<strong>in</strong>g withButte County on the development of a mental health grant proposal.Program Plann<strong>in</strong>gStaff reported that <strong>data</strong> <strong>collection</strong>, research, <strong>and</strong> evaluation allowed strategic expansions of services.The research conducted at FRBH answered the questions, “What do we need, <strong>and</strong> where do we needit?” Services were “changed to fit what the people said they needed.” FRBH <strong>use</strong>d survey results to “tellthe people” how they were “respond<strong>in</strong>g to the needs.” Evaluation resulted <strong>in</strong> “policy <strong>and</strong> service designchanges.” One <strong>in</strong>terviewee stated, “FRBH is a one-stop shop for county services.”EvaluationServices are evaluated on a regular basis. Interviewers said the follow<strong>in</strong>g: “It was <strong>in</strong>itially scary, but wewelcome it now.” The <strong>in</strong>terviewees reported that <strong>data</strong> are <strong>use</strong>d “to do better,” “be more cost-effective,”<strong>and</strong> “make life more comfortable for families.” Evaluation <strong>data</strong> are <strong>use</strong>d for practice <strong>and</strong> serviceimprovements, <strong>and</strong> “reports go back to the programs to confirm the progress of a service or providenew <strong>in</strong>sights on how it could be improved.”Case Studies <strong>in</strong> Tribal Data Collection <strong>and</strong> Use<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association34


Lack of Data <strong>and</strong> BarriersThere were five types of barriers identified dur<strong>in</strong>g <strong>in</strong>terviews with FRBH staff: external barriers, <strong>in</strong>ternalbarriers, practice barriers, resource barriers, <strong>and</strong> capacity barriers.External BarriersIn the past, FRBH grant applications were denied due to a lack of <strong>data</strong>. Without <strong>in</strong>ternally generated<strong>data</strong>, FRBH looked to outside agencies but found that others “don’t’ keep <strong>data</strong> on <strong>Indian</strong> people.”Outside agency personnel “got defensive when asked for <strong>data</strong> they didn’t have.” Accord<strong>in</strong>g to one<strong>in</strong>terviewee, “work<strong>in</strong>g relationships with key people” were lack<strong>in</strong>g <strong>and</strong> “county officials often don’t see<strong>data</strong> as people.” Data from other behavioral health programs have not been available or broken out forthe American <strong>Indian</strong>/Alaska Native population. Interviewees reported that much of this is improv<strong>in</strong>gbeca<strong>use</strong> of the <strong>in</strong>creased <strong>data</strong> <strong>collection</strong> effort underway at FRBH.Internal BarriersInternal barriers to effective <strong>collection</strong> <strong>and</strong> <strong>use</strong> of <strong>data</strong> at the <strong>tribal</strong> level occurred due to concerns aboutshar<strong>in</strong>g <strong>data</strong> that may be politically sensitive or difficult for the community to accept. Examples may berates of alcoholism, drug <strong>use</strong>, <strong>and</strong> child or elder ab<strong>use</strong>. Additional difficulties occurred when other <strong>tribal</strong>departments or related programs have vary<strong>in</strong>g values about <strong>data</strong>, with some departments valu<strong>in</strong>g <strong>and</strong>enforc<strong>in</strong>g strict confidentially <strong>and</strong> others be<strong>in</strong>g will<strong>in</strong>g to code or otherwise disguise sensitive <strong>data</strong> foroutside consumption.Practice BarriersPersons <strong>in</strong>terviewed regarded the IRB process as a major hurdle, tak<strong>in</strong>g, “more than a year” <strong>in</strong> one<strong>case</strong>. Another practice barrier was present <strong>in</strong> the survey design beca<strong>use</strong> of the need to honor etiquette<strong>and</strong> cultural protocols where human relationships are more important than ask<strong>in</strong>g questions conta<strong>in</strong>edon forms. Overcom<strong>in</strong>g “community distrust” of <strong>data</strong> <strong>and</strong> community fear surround<strong>in</strong>g the <strong>use</strong> of <strong>data</strong>aga<strong>in</strong>st the community were cited as additional barriers.Other practice barriers <strong>in</strong>cluded the limitations of sample selection <strong>and</strong> size. Interviewees stated thatst<strong>and</strong>ardized research <strong>in</strong>struments are limited beca<strong>use</strong> they are not culturally appropriate for American<strong>Indian</strong>/Alaska Native populations. They also said that U.S. Census Bureau <strong>data</strong> is <strong>in</strong>complete, unreliable,<strong>and</strong> fails to offer a reliable basel<strong>in</strong>e for comparison generalizations about the population. Overall, many<strong>in</strong>terviewees agreed that evaluation efforts have been extensive but are not sufficiently robust to makereliable generalizations <strong>and</strong> are vulnerable to criticism for not be<strong>in</strong>g “scientific.”Case Studies <strong>in</strong> Tribal Data Collection <strong>and</strong> Use<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association35


Resource BarriersInsufficient resources were also cited as a barrier. Accord<strong>in</strong>g to one <strong>in</strong>terviewee, “A lot has been donewith little resources, but we could do more.” Sometimes “<strong>data</strong> are collected as needs arise or budgetsallow.” Without adequate resources, <strong>data</strong> gather<strong>in</strong>g is “responsive <strong>and</strong> not comprehensively planned.”Capacity BarriersPrior to the Circles of Care grant, the program did not have tra<strong>in</strong><strong>in</strong>g “on how to <strong>use</strong> <strong>data</strong> to benefit whatyou are do<strong>in</strong>g.” No one knew how to “maximize <strong>data</strong>, report, <strong>and</strong> get published <strong>and</strong> <strong>use</strong> <strong>data</strong> to benefiteveryone.” FRBH staff members suggested that the technical assistance received dur<strong>in</strong>g the Circles ofCare grant helped them underst<strong>and</strong> “why it’s important to collect <strong>data</strong>” <strong>and</strong> how to assess “sample<strong>in</strong>struments <strong>and</strong> how to modify them.”Tra<strong>in</strong><strong>in</strong>g <strong>and</strong> Staff DevelopmentRespondents <strong>in</strong>dicated that FRBH staff are well versed <strong>in</strong> confidentiality <strong>and</strong> protection of clients <strong>and</strong>have been tra<strong>in</strong>ed <strong>in</strong> the requirements of HIPAA. They also see the purpose of <strong>data</strong> <strong>collection</strong>, theoutcome, <strong>and</strong> how <strong>data</strong> <strong>collection</strong> directly affects their jobs. Circles of Care created a teamwork processby <strong>in</strong>still<strong>in</strong>g a trust <strong>in</strong> <strong>data</strong> at all levels of the organization. While FRBH does not have regular tra<strong>in</strong><strong>in</strong>g on<strong>data</strong> <strong>collection</strong>, <strong>in</strong>terviewees reported that it is “difficult to separate tra<strong>in</strong><strong>in</strong>g from the do<strong>in</strong>g of evaluation<strong>and</strong> <strong>data</strong> collect<strong>in</strong>g.” Some staff <strong>in</strong>dicated a desire for tra<strong>in</strong><strong>in</strong>g <strong>in</strong> order to get a “better underst<strong>and</strong><strong>in</strong>g ofthe <strong>data</strong> <strong>and</strong> to explore what <strong>data</strong> is capable of provid<strong>in</strong>g <strong>and</strong> what it isn’t.” The evaluator suggestedtra<strong>in</strong><strong>in</strong>g to help staff to be able to “improve the <strong>data</strong>” <strong>and</strong> to cont<strong>in</strong>ue to <strong>in</strong>crease the “comfort level ofus<strong>in</strong>g <strong>data</strong> as a tool.”ThemesThere are several themes connect<strong>in</strong>g the three FRBH <strong>in</strong>terviews: Energy: There is a great deal of energy surround<strong>in</strong>g <strong>data</strong> <strong>collection</strong> <strong>and</strong> usage <strong>in</strong> thiscommunity; however, there is still an immense amount of potential energy. There is aneagerness to do more, learn more, <strong>and</strong> accomplish more. This program recognized the problemof not hav<strong>in</strong>g sufficient <strong>data</strong> <strong>and</strong> did someth<strong>in</strong>g about it. Their success has created positiveenergy for future work. Teamwork/Mutual Respect: There is a strong connection between the people we <strong>in</strong>terviewed.This connection is a result of respect <strong>and</strong> a feel<strong>in</strong>g of unification <strong>in</strong> work<strong>in</strong>g toward commongoals. Beca<strong>use</strong> FRBH resembles a team, each person plays a different role: the director is thevisionary <strong>and</strong> strategist; the l<strong>in</strong>e staff are the community connection <strong>and</strong> heart of the people; <strong>and</strong>the evaluator is the <strong>data</strong> expert <strong>and</strong> “bi-cultural translator” who br<strong>in</strong>gs the vision <strong>and</strong> communitytogether. Relationships with Other Agencies: Although relationships with the county have been difficult<strong>in</strong> the past, FRBH staff have worked hard to create these relationships. They have takenCase Studies <strong>in</strong> Tribal Data Collection <strong>and</strong> Use<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association36


esponsibility for the <strong>collection</strong> of their own <strong>data</strong> <strong>in</strong>stead of wait<strong>in</strong>g for others to act or help them<strong>and</strong> have positively <strong>in</strong>fluenced the county as a result. Interviewees <strong>in</strong>dicated this is also an areathat can <strong>use</strong> improvement. Value of Data: It is clear that the high value placed on <strong>data</strong> has shaped the whole FRBHprogram. It is clear that one person can guide an organization by valu<strong>in</strong>g <strong>data</strong> <strong>and</strong> dispers<strong>in</strong>g itto all levels <strong>in</strong> ways they can underst<strong>and</strong> <strong>and</strong> <strong>use</strong>. An Overall Need to Know, Interpret, <strong>and</strong> Improve the Data: Although much has beenaccomplished, there is a def<strong>in</strong>ite need for improvement <strong>in</strong> this area. A significant improvementwould be to create a higher level of comfort with <strong>data</strong>. Role of the “Data Person” (the Evaluator):EBeca<strong>use</strong> many American <strong>Indian</strong>/Alaska Nativecommunities have had negative experiences with <strong>data</strong>, it is essential that the evaluator or “<strong>data</strong>person” be trusted <strong>and</strong> available <strong>and</strong> that s/he act as a participant observer <strong>in</strong> the process. Howthe community views this person is directly related to how they view <strong>data</strong>. Role of Circles of Care: The Circles of Care grant has been a vital part of FRBH’s relationshipwith <strong>data</strong>. By acquir<strong>in</strong>g certa<strong>in</strong> statistics <strong>and</strong> numbers, the Circles of Care program has helpedFRBH to see the need for <strong>data</strong> <strong>and</strong> accountability <strong>and</strong> has served to fuel the larger vision. Other Barriers: Barriers to <strong>data</strong> <strong>collection</strong> <strong>and</strong> usage still exist at FRBH. These <strong>in</strong>cluded anegative view <strong>and</strong> distrust of <strong>data</strong>; lack of resources, knowledge, <strong>and</strong> culturally appropriate<strong>in</strong>strumentation; <strong>and</strong> a tenuous relationship with the county. Barriers exist with<strong>in</strong> the communityas well <strong>in</strong> the form of resistance from outside the community.SummaryFRBH has made <strong>data</strong> a priority <strong>and</strong> a value not only beca<strong>use</strong> of what it can do for the program (fund<strong>in</strong>g,program evaluation, etc.) but also beca<strong>use</strong> of its general importance as a beneficial resource. FRBH’sleader is a <strong>data</strong> visionary who has brought her own appreciation of research to this organization’sactivities by br<strong>in</strong>g<strong>in</strong>g it to a level others can underst<strong>and</strong>. Instead of wait<strong>in</strong>g for the system to change orothers to collect the <strong>data</strong> <strong>and</strong> do the work, FRBH has taken a proactive approach to <strong>data</strong> <strong>collection</strong> <strong>and</strong><strong>use</strong>. Consider<strong>in</strong>g how far it has come with few resources, this program is a model for others.Two of the strongest aspects of the program are the connection to the people it serves <strong>and</strong> how servicesare the motivation <strong>and</strong> driv<strong>in</strong>g force beh<strong>in</strong>d the community’s relationship to <strong>data</strong>. As expressed by onestaff member, “<strong>data</strong> are the people,” “they have names <strong>and</strong> faces,” <strong>and</strong> effective <strong>data</strong> <strong>collection</strong> <strong>and</strong> <strong>use</strong>is the way to help them get the services they need. While the FRBH program foc<strong>use</strong>s on facts, numbers,<strong>and</strong> statistics, it could not succeed without plac<strong>in</strong>g a great deal of value on the culture, humanconnection, trust, <strong>and</strong> the creation <strong>and</strong> ma<strong>in</strong>tenance of relationships.Case Studies <strong>in</strong> Tribal Data Collection <strong>and</strong> Use<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association37


CHAPTER 4: PORTLAND, OREGON, URBAN AMERICANINDIAN/ALASKA NATIVE COMMUNITYCase Study Subject ProfileThe Portl<strong>and</strong>, Oregon, urban American <strong>Indian</strong>/Alaska Native community is comprised of a diversepopulation represented by over 100 tribes. The northwest regional offices of both the Bureau of <strong>Indian</strong>Affairs (BIA) <strong>and</strong> <strong>Indian</strong> Health Services (IHS) are located <strong>in</strong> Portl<strong>and</strong>, Oregon. These regional officesserve <strong>tribal</strong> cultures not <strong>in</strong>digenous to the area, thus add<strong>in</strong>g to the urban American <strong>Indian</strong>/Alaska Nativepopulation. There are a large number of American <strong>Indian</strong>/Alaska Native grassroots non-profit agencies,cultural groups, <strong>and</strong> organizations that work together to solve problems, address issues, <strong>and</strong> plan for thefuture. This community can be described as “cooperative, collaborative, <strong>and</strong> supportive.” Although itcan be depicted as a diverse urban community, there is a comb<strong>in</strong>ed spirit <strong>and</strong> an appreciation of thedifferences found with<strong>in</strong>.We <strong>in</strong>cluded an urban American <strong>Indian</strong>/Alaska Native population <strong>in</strong> the <strong>case</strong> study <strong>in</strong> order to exam<strong>in</strong>e ifthe issues for community-based urban American <strong>Indian</strong>/Alaska Native agencies were similar to ordifferent from <strong>tribal</strong> or consortium-based programs. Urban American <strong>Indian</strong>/Alaska Native communitybasedagencies have recently completed a report for the local county on <strong>data</strong> issues. They found thatservices <strong>in</strong> general <strong>in</strong> the county were under great pressure due to statewide budget cuts.As part of the <strong>case</strong> study process, four agencies, described below, were selected to participate <strong>in</strong> the<strong>in</strong>terviews.Native American Youth AssociationThe Native American Youth Association (NAYA) is available to all self-identified American <strong>Indian</strong>/AlaskaNative youth throughout Multnomah County. The goals of NAYA are to ensure the health of futuregenerations by develop<strong>in</strong>g more options for youth, families, <strong>and</strong> the community. NAYA works to <strong>in</strong>creaseopportunities for healthy activities through the promotion of participation of American <strong>Indian</strong>/AlaskaNative youth <strong>in</strong> conferences, camps, support groups, cultural activities, lectures, <strong>and</strong> special events.Multnomah County Department of Community JusticeThe Multnomah County Department of Community Justice promotes public safety <strong>and</strong> strives to reducerecidivism among juvenile del<strong>in</strong>quents <strong>and</strong> adult offenders through a balance of supervision, services,<strong>and</strong> sanctions. It seeks to share <strong>in</strong>formation on topics such as what works to keep communities safe,crime reduction prevention, <strong>and</strong> evaluation of what local policies work best.Case Studies <strong>in</strong> Tribal Data Collection <strong>and</strong> Use<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association38


Portl<strong>and</strong> Public Schools Title IX <strong>Indian</strong> Education ProjectThe Portl<strong>and</strong> Public Schools Title IX <strong>Indian</strong> Education Project provides supplemental services to meetthe culturally related academic needs of project-enrolled students. Located at Hosford Middle School,the project is federally funded through the Office of Education <strong>in</strong> Wash<strong>in</strong>gton, DC <strong>and</strong> also throughPortl<strong>and</strong> Public Schools. Grant funds from various foundations help support special student activities<strong>and</strong> programs. The project has enrolled approximately 1,150 students (pre-k<strong>in</strong>dergarten through grade12) of American <strong>Indian</strong>/Alaska Native ancestry.Native American Rehabilitation Association of the Northwest, Inc.The Native American Rehabilitation Association of the Northwest (NARA) is an American <strong>Indian</strong>/AlaskaNative owned <strong>and</strong> operated private, non-profit organization with a treatment philosophy emphasiz<strong>in</strong>g afully <strong>in</strong>tegrated system of care. It consists of a health cl<strong>in</strong>ic, mental health services, adult residentialsubstance ab<strong>use</strong> treatment, a child development center, outpatient adult <strong>and</strong> adolescent substanceab<strong>use</strong> treatment, <strong>and</strong> community <strong>and</strong> family resource services. The mission of NARA is to provideeducation, physical <strong>and</strong> mental health services, <strong>and</strong> substance ab<strong>use</strong> treatment that is culturallyappropriate for American <strong>Indian</strong>s <strong>and</strong> Alaska Natives.F<strong>in</strong>d<strong>in</strong>gsUnderly<strong>in</strong>g Values about Data CollectionThe Portl<strong>and</strong>, Oregon, urban American <strong>Indian</strong>/Alaska Native community is a diverse community ofAmerican <strong>Indian</strong>s/Alaska Natives who live <strong>in</strong> a geographic area populated with many other cultures,bus<strong>in</strong>esses, <strong>and</strong> issues compet<strong>in</strong>g for attention. However, as different as this sett<strong>in</strong>g may be from a <strong>tribal</strong>community on a reservation, it is a community that describes itself as “cooperative, collaborative, <strong>and</strong>supportive.” There is great value placed on this sense of community <strong>and</strong> <strong>in</strong>terconnectedness. It is acommunity that comes together <strong>in</strong> times of need, <strong>and</strong> that comes together to plan. This is currentlyevidenced by the new wave of energy surround<strong>in</strong>g <strong>data</strong> <strong>collection</strong> <strong>and</strong> <strong>use</strong>. Historically, there has beena great amount of difficulty <strong>in</strong> f<strong>in</strong>d<strong>in</strong>g statistics on American <strong>Indian</strong>/Alaska Native <strong>in</strong>dividuals <strong>in</strong> general.This difficulty is exacerbated <strong>in</strong> an urban sett<strong>in</strong>g.Interviewees expressed an <strong>in</strong>creas<strong>in</strong>g <strong>in</strong>terest <strong>and</strong> appreciation for <strong>data</strong>. Often, it was the <strong>in</strong>dividuals <strong>in</strong>leadership positions who held an aff<strong>in</strong>ity for <strong>data</strong> <strong>and</strong> research <strong>and</strong> attempted to spread that visionthroughout their organizations. In the <strong>in</strong>terviews, <strong>data</strong> <strong>collection</strong> <strong>and</strong> <strong>use</strong> was described simultaneouslyas “one of the hottest topics” <strong>and</strong> hav<strong>in</strong>g the connotation of be<strong>in</strong>g “nerdy.” Informants described a newawareness that “<strong>in</strong> order to thrive <strong>in</strong> the current environment, <strong>data</strong> <strong>and</strong> statistical evidence arenecessary.” As these American <strong>Indian</strong>/Alaska Native organizations have reached the maturity, size, <strong>and</strong>ability to maneuver with<strong>in</strong> the urban environment, they have had to beg<strong>in</strong> to underst<strong>and</strong> <strong>and</strong> appreciate<strong>data</strong> <strong>in</strong> a new way. As one key <strong>in</strong>formant put it, “new <strong>data</strong> forces you to th<strong>in</strong>k outside the box.”Case Studies <strong>in</strong> Tribal Data Collection <strong>and</strong> Use<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association39


Data can be <strong>use</strong>d as an evaluation tool to uncover what priorities their programs are address<strong>in</strong>g, <strong>and</strong> to“test their own perspectives.” Mission <strong>and</strong> vision, as well as the effectiveness of services, were seen asbe<strong>in</strong>g <strong>in</strong>formed by <strong>data</strong>. The <strong>in</strong>dividuals we spoke with saw <strong>data</strong> as a way to make choices, to identify<strong>and</strong> designate priorities, <strong>and</strong> to have a greater awareness of the population they serve. Data, <strong>in</strong> thissense, are valued navigational tools for their entire organizations, as well as for treatment, plann<strong>in</strong>g, <strong>and</strong>fund<strong>in</strong>g.Each organization’s respect for their patients <strong>and</strong>/or clients is one of their highest values. Theconfidentiality <strong>and</strong> protection of these clients can also be found <strong>in</strong> HIPPA, which establishes nationalst<strong>and</strong>ards to protect the privacy of personal health <strong>in</strong>formation. This protectiveness of clients <strong>and</strong> <strong>data</strong> isfundamental to the way each organization operates. There is “a need to control our own <strong>data</strong>.” The valueof respect for the culture <strong>and</strong> its people is far greater than the need to <strong>in</strong>terpret the <strong>data</strong>.There are two trends we observed <strong>in</strong> the <strong>in</strong>terviewed organizations. First, is a lack of specific policies <strong>in</strong>relation to how <strong>data</strong> are collected, shared, <strong>and</strong> <strong>in</strong>terpreted. The second is extreme caution when gett<strong>in</strong>g<strong>in</strong>volved <strong>in</strong> <strong>data</strong> relationships. Organizations may share certa<strong>in</strong> <strong>data</strong> with others but are extremelyskeptical about lett<strong>in</strong>g specific <strong>in</strong>formation leak to outside sources for fear of how it may be <strong>in</strong>terpreted<strong>and</strong> h<strong>and</strong>led <strong>and</strong> whether or not it will be returned. As one <strong>in</strong>terviewee stated, “Who can say whathappens to it once it leaves the organization.”The types of <strong>data</strong> regard<strong>in</strong>g children that organizations <strong>in</strong> the Portl<strong>and</strong>, Oregon, American <strong>Indian</strong>/AlaskaNative community <strong>use</strong> <strong>in</strong>clude program service <strong>data</strong>, <strong>in</strong>dividual profile <strong>data</strong>, <strong>and</strong> <strong>data</strong> they collect toshow the relationships between programs. U.S. Census Bureau <strong>data</strong>, national statistics, <strong>and</strong> <strong>data</strong> fromSAMHSA are <strong>use</strong>d, along with Multnomah County (e.g., juvenile justice) <strong>and</strong> state <strong>data</strong>. However, thereare cont<strong>in</strong>uous problems <strong>in</strong> f<strong>in</strong>d<strong>in</strong>g accurate <strong>data</strong> on population estimates <strong>and</strong> school dropout<strong>in</strong>formation. As one <strong>in</strong>terviewee stated, “We have to <strong>use</strong> national statistics <strong>and</strong> some state statistics butrecognize that while both of these are wrong, it is all anybody has.” Organizations <strong>in</strong>dicated that hav<strong>in</strong>g<strong>data</strong> to present is essential for their survival, even when there is an acknowledged awareness that theavailable <strong>data</strong> are <strong>in</strong>correct. For example, the <strong>Indian</strong> Education Project office does not have family <strong>data</strong>to determ<strong>in</strong>e what percentage of their population lives <strong>in</strong> poverty. The only way of ga<strong>in</strong><strong>in</strong>g <strong>in</strong>sight <strong>in</strong>to thisissue is to keep track of how many students receive reduced lunch.Data SystemsEach of the key <strong>in</strong>formants <strong>and</strong> the organizations they represent with<strong>in</strong> the Portl<strong>and</strong>, Oregon, urbanAmerican <strong>Indian</strong>/Alaska Native community have developed their own methods of <strong>data</strong> <strong>collection</strong>,storage, <strong>and</strong> organization. For <strong>in</strong>stance, they created an electronic student <strong>in</strong>formation system <strong>and</strong>several client <strong>in</strong>formation systems such as the Healthco Healthco Melbrook Structured Query Language(SQL) <strong>data</strong>base <strong>and</strong> Filemaker Pro. The major compla<strong>in</strong>t among these <strong>in</strong>terviewees when us<strong>in</strong>g systemsCase Studies <strong>in</strong> Tribal Data Collection <strong>and</strong> Use<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association40


that they have not created is the need to perform multiple entries <strong>in</strong> systems ma<strong>in</strong>ta<strong>in</strong>ed by otheragencies that are <strong>in</strong>compatible with each other <strong>and</strong> with their own systems. For example, NARA has hadto enter <strong>data</strong> numerous times for each client <strong>in</strong> order to satisfy requirements for different grants. Theirnew system, Healthco Melbrook SQL, will assist with practice management, outcomes, <strong>and</strong> evaluationsfor new grants <strong>and</strong> will export to the Resource Patient Management System (RPMS) <strong>and</strong> the CentralPatient Management System (CPMS), which is the state system. It will not, however, address medicalrecords <strong>and</strong> will not be up <strong>and</strong> runn<strong>in</strong>g for several months after the time of the <strong>in</strong>terview. It has taken agreat deal of time, effort, <strong>and</strong> other resources to design the program to fit NARA’s needs, while tak<strong>in</strong>g<strong>in</strong>to consideration the multiple systems <strong>and</strong> agencies they encounter.The responsibility of ma<strong>in</strong>ta<strong>in</strong><strong>in</strong>g <strong>data</strong> belongs to the organization that needs the resources <strong>and</strong> fund<strong>in</strong>g.Beca<strong>use</strong> each department <strong>in</strong> the county performs its own research <strong>and</strong> evaluation <strong>and</strong> ma<strong>in</strong>ta<strong>in</strong>s its own<strong>data</strong> system, <strong>in</strong>formation is not comb<strong>in</strong>ed <strong>in</strong> a way that is helpful to AI/AN needs. In addition, county <strong>data</strong>relies on client-<strong>in</strong>itiated claims of American <strong>Indian</strong>/Alaska Native identity. There is a sense of alienation<strong>and</strong> compartmentalization with<strong>in</strong> the county that carries over <strong>in</strong>to the realm of <strong>data</strong> <strong>collection</strong> <strong>and</strong> <strong>use</strong> <strong>in</strong>the urban American <strong>Indian</strong>/Alaska Native population. NAYA has started to keep its own <strong>in</strong>ternal <strong>data</strong> tosatisfy a desire <strong>and</strong> need for more detail <strong>in</strong> the domestic violence program as well as reveal disparities<strong>in</strong> the <strong>data</strong> it receives from others. The <strong>data</strong> system <strong>use</strong>d by the county was not comprehensive enoughto give the program <strong>use</strong>ful <strong>in</strong>formation.In regard to <strong>in</strong>formation shar<strong>in</strong>g with state or other providers, urban American <strong>Indian</strong>/Alaska Nativeprograms are very <strong>in</strong>terested <strong>in</strong> the protection of their <strong>data</strong>. If it is perceived that shar<strong>in</strong>g <strong>data</strong> (withoutidentifiers) will benefit clients, then they are open to share. There is also a recognized need for American<strong>Indian</strong>/Alaska Native organizations to develop written policies <strong>in</strong> this area.Tribes also have difficulty obta<strong>in</strong><strong>in</strong>g <strong>data</strong> at the county level, s<strong>in</strong>ce, although county <strong>data</strong> are consideredpart of the public doma<strong>in</strong>, they are often <strong>in</strong>accessible or accessible only with a great deal of effort <strong>and</strong>difficulty. An <strong>in</strong>terviewee stated that, “If a report published by the county is completed, they are will<strong>in</strong>g toshare, but if work still needs to be done, no <strong>in</strong>formation will be given out.” Requested <strong>data</strong> can also takesignificant amounts of time to receive.Relationships, Accountability, <strong>and</strong> OwnershipThere is common agreement among the sites <strong>in</strong>terviewed that relationships with other agencies, notablythe county, are complicated <strong>and</strong> stra<strong>in</strong>ed. Relationship build<strong>in</strong>g is a process that these organizationsfeel takes time <strong>and</strong> careful plann<strong>in</strong>g, <strong>and</strong> when groomed, is seen as able to strategically attract newfund<strong>in</strong>g.Case Studies <strong>in</strong> Tribal Data Collection <strong>and</strong> Use<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association41


Although county relationships may be challeng<strong>in</strong>g, many American <strong>Indian</strong>/Alaska Native organizationsare eager to make new contacts <strong>and</strong> improve on current relationships. NARA has relationships with theCenters for Disease Control <strong>and</strong> Prevention (CDC), IHS, the county, the state, the Office of M<strong>in</strong>orityHealth, SAMHSA, Oregon Youth Authority (OYA), County Crosswalk, Legacy Health Foundation, <strong>and</strong>Northwest Health Foundation <strong>and</strong> has a total of 42 grants <strong>and</strong> contracts. Even though this is timeconsum<strong>in</strong>g,NARA is very <strong>in</strong>terested <strong>in</strong> nurtur<strong>in</strong>g these types of relationships. Accord<strong>in</strong>g to one<strong>in</strong>terviewee, “It is hard to get mean<strong>in</strong>gful <strong>in</strong>formation unless you know the system <strong>and</strong> have relationshipswith key people.” The <strong>in</strong>terviewee added, “We <strong>use</strong>d to have a problem but have created a strongrelationship with the right person, <strong>and</strong> now it is work<strong>in</strong>g better.”Organizations <strong>in</strong>dicated that when they report <strong>data</strong> to fund<strong>in</strong>g sources <strong>and</strong> other agencies, they seldomreceive usable or mean<strong>in</strong>gful <strong>in</strong>formation back. When the <strong>data</strong> is returned, it is returned <strong>in</strong> a form thatcannot be <strong>use</strong>d, with <strong>in</strong>correct <strong>in</strong>formation, or has been <strong>in</strong>terpreted <strong>in</strong> an un<strong>in</strong>tended or <strong>in</strong>accurate way.As a result, they feel that accountability often flows <strong>in</strong> a one-way direction—away from the organizations<strong>in</strong>terviewed.An example of these <strong>data</strong> problems can be seen by look<strong>in</strong>g at school <strong>data</strong> at the state level. School<strong>data</strong> at the state level is difficult to access, <strong>and</strong> the term “multi-ethnic” strips away the American<strong>Indian</strong>/Alaska Native identity. Another example is a recently cited county statistic <strong>in</strong>dicat<strong>in</strong>g that 22% ofAmerican <strong>Indian</strong>/Alaska Native children live <strong>in</strong> poverty, while the population NAYA serves documents95% liv<strong>in</strong>g <strong>in</strong> poverty.Who “owns” <strong>data</strong> is another issue, <strong>and</strong> often based on the values of protection <strong>and</strong> confidentiality.Although there is a lack of specific written policies about the ownership of <strong>data</strong>, there is a widely heldorganizational assumption <strong>and</strong> belief that the organization owns the <strong>data</strong> <strong>and</strong> that clients served haveaccess to their records <strong>and</strong> charts. There is an apparent fear about the mis<strong>use</strong> <strong>and</strong> mis<strong>in</strong>terpretation of<strong>data</strong> <strong>in</strong> that <strong>data</strong> could be <strong>use</strong>d <strong>in</strong> a harmful way that would lead to devastat<strong>in</strong>g effects on the reputation<strong>and</strong> well-be<strong>in</strong>g of families. One <strong>in</strong>terviewee said, “We wouldn’t allow others to <strong>use</strong> our <strong>data</strong>; we havenever said yes.” This attitude is due to decades of mis<strong>use</strong> of <strong>data</strong> by outsiders, <strong>and</strong> is difficult for some<strong>tribal</strong> members to overcome.Use of Data <strong>and</strong> Data as a ResourceData is be<strong>in</strong>g <strong>use</strong>d <strong>in</strong> the Portl<strong>and</strong>, Oregon, urban American <strong>Indian</strong>/Alaska community for resourcedevelopment, advocacy, program plann<strong>in</strong>g, <strong>and</strong> evaluation, as well as for sett<strong>in</strong>g future goals, assess<strong>in</strong>gneeds, <strong>and</strong> different types of plann<strong>in</strong>g.Case Studies <strong>in</strong> Tribal Data Collection <strong>and</strong> Use<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association42


Resource DevelopmentThe American <strong>Indian</strong>/Alaska Native organizations <strong>in</strong> the Portl<strong>and</strong>, Oregon, community acknowledges thatfund<strong>in</strong>g is often determ<strong>in</strong>ed by <strong>data</strong>, <strong>and</strong> consequently, service delivery <strong>and</strong> operation rely upon the<strong>collection</strong> <strong>and</strong> <strong>use</strong> of good <strong>data</strong>. Once grants are secured, <strong>data</strong> is necessary to report back to thefund<strong>in</strong>g sources. One <strong>in</strong>terviewee stressed the importance of the <strong>use</strong> of <strong>data</strong> <strong>in</strong> the follow<strong>in</strong>g comment,“Statistics are the only way to get fund<strong>in</strong>g.” They also report that the lack of reliable <strong>data</strong> <strong>and</strong> thepresence of <strong>in</strong>accurate <strong>data</strong> lead to “our people go<strong>in</strong>g without services.Advocacy, Policy, Education, <strong>and</strong> Communication PurposesData are also <strong>use</strong>d as a tool to promote public awareness <strong>and</strong> to advocate for needs of the urbanAmerican <strong>Indian</strong>/Alaska Native population. The four organizations profiled <strong>use</strong> <strong>data</strong> strategically to<strong>in</strong>fluence policy. NARA recently <strong>use</strong>d its <strong>data</strong> to testify <strong>in</strong> the legislature regard<strong>in</strong>g the Oregon HealthPlan. “Policy is built around constant advocacy, how many people there are to <strong>in</strong>fluence it, <strong>and</strong> <strong>data</strong><strong>collection</strong>. Our agencies are mak<strong>in</strong>g headway,” one <strong>in</strong>terviewee said. Another stated, “Data can act asthe foundation of advocacy beca<strong>use</strong> it provides hard evidence that can complement personal stories<strong>and</strong> anecdotal evidence.” Respondents <strong>in</strong>dicated that when <strong>data</strong> is presented <strong>in</strong> an effective manner, itis an excellent way to communicate the needs of the population.Program Plann<strong>in</strong>g <strong>and</strong> EvaluationMembers of the Portl<strong>and</strong>, Oregon, urban American <strong>Indian</strong>/Alaska Native community also emphasizedthe direct <strong>use</strong> of <strong>data</strong> <strong>in</strong> the plann<strong>in</strong>g <strong>and</strong> evaluation of their organizations. Data is rout<strong>in</strong>ely <strong>use</strong>d toassess cost-effectiveness, to def<strong>in</strong>e budgets <strong>and</strong> work plans, <strong>and</strong> to assess service utilization <strong>and</strong>effectiveness with<strong>in</strong> each organization. One of the organizations performs a yearly report that <strong>in</strong>cludesdemographics <strong>and</strong> other pert<strong>in</strong>ent <strong>data</strong>. It looks at which services are gett<strong>in</strong>g the most promis<strong>in</strong>g results<strong>and</strong> prioritizes those at budget time. The <strong>data</strong> is then <strong>use</strong>d <strong>in</strong> the budget presentation to the board ofdirectors <strong>and</strong> connect spend<strong>in</strong>g to outcomes. In this way, the organizations <strong>in</strong> the community can seethe l<strong>in</strong>k between <strong>data</strong>/evaluation <strong>and</strong> results evident <strong>in</strong> policy <strong>and</strong> practice.Future Goals, Direction, <strong>and</strong> NeedsThere was a common theme among all <strong>in</strong>terviewees that suggested a desire to greatly exp<strong>and</strong> <strong>data</strong><strong>collection</strong> <strong>and</strong> <strong>use</strong>. One organization is very <strong>in</strong>terested <strong>in</strong> do<strong>in</strong>g a comprehensive needs assessment ofthe Portl<strong>and</strong>, Oregon, American <strong>Indian</strong>/Alaska Native community <strong>and</strong> is look<strong>in</strong>g for support from othersources. Another organization desires to focus <strong>data</strong> materials on well-be<strong>in</strong>g <strong>and</strong> to relate them to itsmission.Case Studies <strong>in</strong> Tribal Data Collection <strong>and</strong> Use<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association43


The Lack of Data <strong>and</strong> BarriersExternal BarriersThere is a magnitude of external barriers fac<strong>in</strong>g the Portl<strong>and</strong>, Oregon, urban American <strong>Indian</strong>/AlaskaNative community – primarily a prejudice aga<strong>in</strong>st American <strong>Indian</strong>/Alaska Native organization collect<strong>in</strong>gtheir own <strong>data</strong>. Respondents reported be<strong>in</strong>g questioned on their credibility <strong>and</strong> on the validity of their<strong>data</strong>. As one <strong>in</strong>terviewee stated, “The <strong>data</strong> is seen as suspect.” Other words <strong>and</strong> phrases that appearedfrequently throughout the <strong>in</strong>terviews were “biased,” “unreliable,” “good <strong>data</strong> will be a struggle,” <strong>and</strong>“conflict of <strong>in</strong>terest.” Beca<strong>use</strong> some of the <strong>data</strong> be<strong>in</strong>g collected by organizations is not viewed ascredible by government agencies, a lack of trust is created, <strong>and</strong> the correspond<strong>in</strong>g development ofrelationships is h<strong>in</strong>dered. Evidence of this is the study done by NARA <strong>and</strong> NAYA on the estimatedpopulation of urban American <strong>Indian</strong>s/Alaska Natives <strong>in</strong> Portl<strong>and</strong>, Oregon. Although their f<strong>in</strong>d<strong>in</strong>gs(31,000) were remarkable, they were not considered valid or credible to the outside community.All of the people <strong>in</strong>terviewed mentioned hav<strong>in</strong>g previous negative experiences with <strong>data</strong>, <strong>in</strong>clud<strong>in</strong>g<strong>in</strong>accurate <strong>data</strong>, negative expectations, <strong>and</strong> stereotyp<strong>in</strong>g. Interviewees commented that American<strong>Indian</strong>s/Alaska Natives are be<strong>in</strong>g <strong>use</strong>d for their numbers without services be<strong>in</strong>g provided. “They want tocount us, but they don’t want to serve us,” one <strong>in</strong>terviewee reported. The <strong>in</strong>terviewees all had directexperience with this <strong>and</strong> could cite examples where the county wanted to <strong>in</strong>clude as many AI/An aspossible <strong>in</strong> order to access resources, without offer<strong>in</strong>g correspond<strong>in</strong>g services. They expressed a lackof underst<strong>and</strong><strong>in</strong>g, attention <strong>and</strong> awareness around the issues faced by the American <strong>Indian</strong>/AlaskaNative. “People are resistant <strong>and</strong> are sick of hear<strong>in</strong>g about our history,” one key <strong>in</strong>formant said. Theissue of cultural barriers was discussed dur<strong>in</strong>g the <strong>in</strong>terviews beca<strong>use</strong> there are many negativestereotypes about American <strong>Indian</strong>s/Alaska Natives still present today. Included <strong>in</strong> this are “higherexpectations for <strong>Indian</strong> people,” “believ<strong>in</strong>g there are very few <strong>Indian</strong>s,” <strong>and</strong> the feel<strong>in</strong>g on the part ofmany American <strong>Indian</strong>/Alaska Native people that they constantly have to “prove themselves.” Onecultural barrier is the difficulty <strong>in</strong> collect<strong>in</strong>g <strong>data</strong> from a culture based <strong>in</strong> relational <strong>and</strong> circular th<strong>in</strong>k<strong>in</strong>gus<strong>in</strong>g the l<strong>in</strong>ear methods that permeate our society.Informants reported that American <strong>Indian</strong>s/Alaska Natives liv<strong>in</strong>g <strong>in</strong> the Portl<strong>and</strong>, Oregon, metropolitanarea are a very diverse group that are often misidentified or unidentified, which creates an even greaterbarrier to accurate <strong>data</strong>. Accord<strong>in</strong>g to one <strong>in</strong>formant, 30-40% of American <strong>Indian</strong>/Alaska Native kids aremisidentified or not identified as such <strong>in</strong> school. This suggests that the Oregon Department of Education<strong>data</strong> is wrong. The responsibility of keep<strong>in</strong>g <strong>data</strong> must be shared <strong>and</strong> <strong>in</strong>clude careful <strong>and</strong> specificprocedures about identify<strong>in</strong>g American <strong>Indian</strong>s/Alaska Natives.Another significant external barrier to <strong>data</strong> <strong>collection</strong> <strong>and</strong> <strong>use</strong> <strong>in</strong> the Portl<strong>and</strong>, Oregon, American<strong>Indian</strong>/Alaska Native community is <strong>in</strong>stitutional racism <strong>and</strong> challeng<strong>in</strong>g relationships with the county.While the county has the op<strong>in</strong>ion that urban American <strong>Indian</strong>/Alaska Native <strong>data</strong> is not reliable, theCase Studies <strong>in</strong> Tribal Data Collection <strong>and</strong> Use<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association44


county has no policies on <strong>data</strong> <strong>collection</strong> <strong>and</strong> the identification of <strong>Indian</strong>s. One of the major problems <strong>in</strong>this area is a bl<strong>in</strong>d spot on the part of the county <strong>in</strong> recogniz<strong>in</strong>g the difference between urban <strong>and</strong>reservation-based American <strong>Indian</strong>s/Alaska Natives. An <strong>in</strong>terviewee reported be<strong>in</strong>g given the messageabout American <strong>Indian</strong>s/Alaska Natives that “there are not enough to worry about,” “<strong>data</strong> <strong>collection</strong> is toocomplex of a problem to solve,” <strong>and</strong> “the problems of <strong>Indian</strong> people are too serious to do anyth<strong>in</strong>g aboutanyway.”Internal BarriersInternal barriers related to <strong>data</strong> among these organizations <strong>in</strong>cludes a lack of employees <strong>and</strong> otherweaknesses <strong>in</strong> <strong>in</strong>frastructure; actions of American <strong>Indian</strong>/Alaska Native people based on fear, distrust,<strong>and</strong> frustration; <strong>and</strong> the disparities <strong>in</strong> <strong>data</strong> between <strong>in</strong>ternal <strong>data</strong> <strong>collection</strong> <strong>and</strong> that of other agencies.The county recently cited a statistic <strong>in</strong>dicat<strong>in</strong>g that 22% of American <strong>Indian</strong>/Alaska Native children live <strong>in</strong>poverty, while the population NAYA serves documents 95% liv<strong>in</strong>g <strong>in</strong> poverty.Barriers to PracticeThe barriers <strong>in</strong> practice <strong>in</strong>clude the lack of credibility <strong>and</strong> validity <strong>in</strong> the <strong>data</strong> projects performed by theseorganizations.Resource <strong>and</strong> Capacity BarriersCommonly cited challenges <strong>in</strong>cluded a lack of fund<strong>in</strong>g, poor accessibility to county <strong>data</strong>, <strong>and</strong> a lack ofAmerican <strong>Indian</strong>/Alaska Native professionals. One <strong>in</strong>terviewee mentioned, “The commitment <strong>and</strong><strong>in</strong>terest must come from the people.” Perhaps one of the most important resource barriers is the lack ofmoney be<strong>in</strong>g committed toward fund<strong>in</strong>g culturally relevant research among American <strong>Indian</strong>/AlaskaNative communities. As one <strong>in</strong>terviewee stated, “Urban organizations are under funded <strong>and</strong> always <strong>in</strong> acrisis mode. This makes it difficult to generate thoughtful research.”The gaps <strong>in</strong> accurate <strong>data</strong> are a barrier unto themselves <strong>in</strong> this community. Often, there is no fund<strong>in</strong>gawarded to urban American <strong>Indian</strong>/Alaska Native organizations due to a documented lack of numbers.The biggest issue <strong>in</strong> this community is the lack of accurate <strong>and</strong> credible <strong>in</strong>formation needed with<strong>in</strong> theAI/AN community, such as population <strong>and</strong> dropout rates. Comments from <strong>in</strong>terviewees <strong>in</strong>cluded thefollow<strong>in</strong>g: “The right <strong>data</strong> is not there,” “Accuracy is our major concern <strong>and</strong> top priority with <strong>data</strong>,” <strong>and</strong>“<strong>Indian</strong>s are almost <strong>in</strong>visible <strong>in</strong> state <strong>data</strong> systems.” Respondents <strong>in</strong>dicated that “some families thatwon’t say they are <strong>Indian</strong> for fear of the system, so they don’t get counted.” Others stated that “we havefamilies who do identify themselves as <strong>Indian</strong> only to be told to go to the <strong>Indian</strong> agency for services.”<strong>and</strong> “We have <strong>Indian</strong> families that won’t go to ma<strong>in</strong>stream services for help who then never get services,beca<strong>use</strong> the <strong>Indian</strong> organizations are underfunded.”Case Studies <strong>in</strong> Tribal Data Collection <strong>and</strong> Use<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association45


Tra<strong>in</strong><strong>in</strong>g <strong>and</strong> Staff DevelopmentIn the area of tra<strong>in</strong><strong>in</strong>g <strong>and</strong> staff development, there is a lack of resources <strong>and</strong> fund<strong>in</strong>g <strong>and</strong> a need fortra<strong>in</strong><strong>in</strong>g <strong>in</strong> all areas of <strong>data</strong> <strong>collection</strong> <strong>and</strong> <strong>use</strong>. Tra<strong>in</strong><strong>in</strong>g is needed to reduce the community’s fearsabout <strong>data</strong> <strong>and</strong> to allow American <strong>Indian</strong>/Alaska Native organizations to take control of <strong>data</strong> as a tool foradvocacy. Other areas of needed tra<strong>in</strong><strong>in</strong>g that surfaced dur<strong>in</strong>g the <strong>in</strong>terviews <strong>in</strong>cluded <strong>data</strong> <strong>collection</strong>,adm<strong>in</strong>istrative/<strong>data</strong> entry, market<strong>in</strong>g <strong>and</strong> advocacy, documentation, access<strong>in</strong>g <strong>data</strong>, <strong>and</strong> <strong>in</strong>creas<strong>in</strong>g theknowledge <strong>and</strong> level of comfort with <strong>data</strong> overall. There were also several discussions about the role of<strong>and</strong> need for a research <strong>and</strong> evaluation expert with<strong>in</strong> the organizations.ThemesThere are several themes <strong>and</strong> issues connect<strong>in</strong>g the four Portl<strong>and</strong>, Oregon <strong>in</strong>terviews: Lack of respect/validity: There is a lack of respect <strong>and</strong> /or validity given to Portl<strong>and</strong>, Oregon,American <strong>Indian</strong>/Alaska Native organizations that are try<strong>in</strong>g to collect <strong>data</strong>. Due to the lack of<strong>data</strong>, NAYA <strong>and</strong> NARA have been try<strong>in</strong>g to collect their own <strong>data</strong> only to discover the challengeof mak<strong>in</strong>g their f<strong>in</strong>d<strong>in</strong>gs appear credible to others. Lack of policies: There is a lack of policies for the shar<strong>in</strong>g <strong>and</strong> ownership of <strong>data</strong> <strong>and</strong> a need forpolicies regard<strong>in</strong>g these issues. Negative expectations/views of <strong>data</strong>: Negative expectations/views of <strong>data</strong> <strong>in</strong>clude the fear thataccompanies negative expectations <strong>and</strong> views of <strong>data</strong> on the part of American <strong>Indian</strong>/AlaskaNative organizations. They are very protective of their clients’ <strong>data</strong> <strong>and</strong> fear the mis<strong>use</strong> ormisrepresentation that could result from others us<strong>in</strong>g <strong>and</strong> collect<strong>in</strong>g their <strong>data</strong>. Negative expectations/views of American <strong>Indian</strong>/Alaska Native Norganizations: There is aconstant need for American <strong>Indian</strong>/Alaska Native people <strong>and</strong> organizations to prove <strong>and</strong> protectthemselves aga<strong>in</strong>st stereotypes <strong>and</strong> biases held by society. Misidentification of American <strong>Indian</strong>/Alaska Native children: American <strong>Indian</strong>/Alaska Nativechildren are often misidentified early on <strong>and</strong> rema<strong>in</strong> unidentified. Problems <strong>in</strong> relationships with other non-American <strong>Indian</strong>/Alaska Native agencies: Problems<strong>in</strong> relationships with other non-American <strong>Indian</strong>/Alaska Native agencies <strong>in</strong>clude difficulties <strong>in</strong>obta<strong>in</strong><strong>in</strong>g <strong>data</strong>, problems with accountability on the part of other agencies, <strong>and</strong> <strong>data</strong> systemsthat are <strong>in</strong>compatible, as well as negative views of the abilities <strong>and</strong> skills of American<strong>Indian</strong>/Alaska Native organizations. There are many stra<strong>in</strong>ed relationships result<strong>in</strong>g <strong>in</strong> littlecollaboration <strong>and</strong> underst<strong>and</strong><strong>in</strong>g between agencies. Lack of collaboration among key stakeholders: Departments <strong>in</strong> the county are not work<strong>in</strong>gtogether, <strong>and</strong> there is no collaboration on <strong>data</strong> <strong>collection</strong>. Lack of resources: There is a great need for fund<strong>in</strong>g, tra<strong>in</strong><strong>in</strong>g, <strong>and</strong> technical assistance <strong>in</strong> thearea of <strong>data</strong> <strong>collection</strong> <strong>and</strong> <strong>use</strong>. A great deal has been done with very little resources; therefore,the potential <strong>in</strong> this community is very high. It has the energy <strong>and</strong> the need to make changes butneeds resources to help it progress to the next step.Case Studies <strong>in</strong> Tribal Data Collection <strong>and</strong> Use<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association46


Different sense of community: The urban sett<strong>in</strong>g is a very diverse <strong>and</strong> scattered population,<strong>and</strong> American <strong>Indian</strong>/Alaska Native organizations often f<strong>in</strong>d themselves liv<strong>in</strong>g amongst <strong>and</strong>compet<strong>in</strong>g with other agencies for fund<strong>in</strong>g. It is more difficult <strong>in</strong> an urban sett<strong>in</strong>g to provideservices <strong>and</strong> collect <strong>data</strong> on American <strong>Indian</strong>/Alaska Native people liv<strong>in</strong>g with<strong>in</strong> a much largerpopulation. Plann<strong>in</strong>g for <strong>data</strong> <strong>collection</strong> <strong>and</strong> <strong>use</strong> must consider a different type of community.SummaryThe Portl<strong>and</strong>, Oregon, urban American <strong>Indian</strong>/Alaska Native community is <strong>in</strong> a process of great changeas its organizations realize the value <strong>and</strong> importance of <strong>data</strong> <strong>and</strong> the need to be able to make it theirown. Each organization is unique with its own story <strong>and</strong> process, but there are common themesthroughout the community that can be <strong>use</strong>d to glean important <strong>in</strong>sights about the current status of thispopulation. There is a need for <strong>data</strong> <strong>and</strong> statistics on American <strong>Indian</strong>/Alaska Natives <strong>in</strong> the Portl<strong>and</strong>,Oregon, urban community <strong>and</strong> the American <strong>Indian</strong>/Alaska Native population at large <strong>in</strong> order to replacethe assumption that the current statistics are even close to legitimate.One of the most powerful <strong>and</strong> pervasive of these barriers was a feel<strong>in</strong>g of negativity toward American<strong>Indian</strong>/Alaska Native organizations at the county level. This negativity can be considered a form ofracism <strong>in</strong> the way it affects the American <strong>Indian</strong>/Alaska Native population.The urban <strong>Indian</strong> organizations <strong>in</strong> the Portl<strong>and</strong> are work<strong>in</strong>g <strong>in</strong> isolation to improve <strong>data</strong> <strong>collection</strong> <strong>in</strong> theAI/AN community. Their energy suggests that this is the start of a movement <strong>and</strong> an improvement <strong>in</strong> the<strong>data</strong> <strong>collection</strong> <strong>and</strong> <strong>use</strong> by urban American <strong>Indian</strong>s/Alaska Natives. Portl<strong>and</strong> AI/AN organizations arevery protective of their clients, their <strong>data</strong>, <strong>and</strong> their reputations <strong>and</strong> seem fearful of how any <strong>data</strong> may bemis<strong>use</strong>d. Also, stemm<strong>in</strong>g from this fear, there seems to be a feel<strong>in</strong>g of confusion due to too manychallenges <strong>and</strong> a desire to move forward with relatively few resources <strong>and</strong> little direction. There is agreat deal of potential here, <strong>in</strong>clud<strong>in</strong>g the right people <strong>in</strong> leadership positions <strong>and</strong> the need <strong>and</strong> thepotential for resources <strong>and</strong> fund<strong>in</strong>g.Case Studies <strong>in</strong> Tribal Data Collection <strong>and</strong> Use<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association47


CHAPTER 5: PASSAMAQUODDY TRIBE, INDIAN N TOWNSHIPCase Study Profile<strong>Indian</strong> Township is one of two locations of the Passamaquoddy Tribe—the other be<strong>in</strong>g located at thePleasant Po<strong>in</strong>t Reservation <strong>in</strong> Perry, Ma<strong>in</strong>e. <strong>Indian</strong> Township <strong>in</strong>cludes two primary neighborhoods: one atPeter Dana Po<strong>in</strong>t <strong>and</strong> the other <strong>in</strong> Pr<strong>in</strong>ceton, Ma<strong>in</strong>e. The Passamaquoddy are one of four federallyrecognized tribes <strong>in</strong> Ma<strong>in</strong>e. There are approximately 3,600 enrolled Passamaquoddy <strong>tribal</strong> members.The Passamaquoddy reservations (<strong>Indian</strong> Township <strong>and</strong> Pleasant Po<strong>in</strong>t) are governed by a bienniallyelected <strong>tribal</strong> council. The <strong>tribal</strong> council consists of a governor, lieutenant governor, <strong>and</strong> six councilmembers. The council has jurisdiction over l<strong>and</strong>s the tribe owns both <strong>in</strong>side <strong>and</strong> outside of thereservations. A jo<strong>in</strong>t <strong>tribal</strong> council, composed of the govern<strong>in</strong>g bodies of both Passamaquoddyreservations, manages jo<strong>in</strong>t <strong>tribal</strong> property <strong>and</strong> assets. In addition, the Passamaquoddy Tribe elects arepresentative to the Ma<strong>in</strong>e State Legislature.The <strong>in</strong>clusion of the Passamaquoddy Tribe was based on the research team’s knowledge of the tribe’ssuccesses <strong>in</strong> secur<strong>in</strong>g federal grants, its orientation toward program evaluation, <strong>and</strong> its <strong>use</strong> of <strong>in</strong>tegratedservice models, such as “Systems of Care.” Systems of Care is a grant program established by the U.S.Congress under the Comprehensive Community Mental Health Services Program for <strong>Child</strong>ren <strong>and</strong> TheirFamilies. This grant supports the development of comprehensive, coord<strong>in</strong>ated, community-based, <strong>and</strong>culturally competent systems of care for children <strong>and</strong> adolescents with serious emotional disturbances<strong>and</strong> their families. The tribe also exemplifies a circumstance <strong>in</strong> which multiple geographic locations ofthe same tribe complicate <strong>data</strong> <strong>collection</strong> <strong>and</strong> report<strong>in</strong>g across multiple jurisdictions <strong>and</strong> agencies.F<strong>in</strong>d<strong>in</strong>gsThere is a significant amount of <strong>data</strong> generated by the Passamaquoddy <strong>Child</strong>ren’s Mental Health <strong>and</strong><strong>Child</strong> Welfare offices. The primary value held by the <strong>tribal</strong> representatives regard<strong>in</strong>g these <strong>data</strong> isconfidentiality. Data is sent to the state of Ma<strong>in</strong>e, the Bureau of <strong>Indian</strong> Affairs (BIA), <strong>and</strong> to the federalgovernment us<strong>in</strong>g codes <strong>in</strong>stead of names. Most of the <strong>data</strong> for federal grants is sent to one source,Op<strong>in</strong>ion Research Corporation (ORC) Macro <strong>in</strong> Atlanta, also without identify<strong>in</strong>g <strong>in</strong>formation(ORC Macrois a federal liaison for the Circles of Care grants).This tribe has been able to collect <strong>and</strong> <strong>use</strong> its own <strong>data</strong> for <strong>in</strong>ternal decision-mak<strong>in</strong>g, grant applications,<strong>and</strong> public presentation to a great extent. The only <strong>data</strong> they <strong>use</strong>, except for general demographic <strong>data</strong>about the county <strong>in</strong> which the tribe is located, is <strong>data</strong> they collect themselves. Tribal <strong>data</strong> collected<strong>in</strong>cludes demographic <strong>and</strong> program service <strong>data</strong>.Case Studies <strong>in</strong> Tribal Data Collection <strong>and</strong> Use<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association48


Data SystemsEach unit of Passamaquoddy Human Services collects its own extensive <strong>data</strong> on clients served, <strong>and</strong>these <strong>data</strong> are not shared across programs, except through the director. Information is ma<strong>in</strong>ta<strong>in</strong>ed <strong>and</strong>stored <strong>in</strong> computers, each <strong>data</strong> system is password protected, <strong>and</strong> only certa<strong>in</strong> people are allowedaccess to each file. Pr<strong>in</strong>touts are kept <strong>in</strong> locked files.S<strong>in</strong>ce different grants require different <strong>data</strong> elements, there is some variability <strong>in</strong> the exact <strong>in</strong>formationcollected.Data Relationships, Accountability, <strong>and</strong> OwnershipData (without identify<strong>in</strong>g <strong>in</strong>formation) produced for IHS are reported to the regional office of IHS, <strong>and</strong> thetribe is able to run reports from these <strong>data</strong>. IHS produces reports for the Eastern IHS (Nashville) region,but the identification (ID) is the area, not the tribe. IHS obta<strong>in</strong>s consent from the tribe for release of any<strong>data</strong> to IHS.ORC Macro ma<strong>in</strong>ta<strong>in</strong>s <strong>data</strong> from the grants the Passamaquoddy Tribe has been awarded <strong>and</strong> sendsreports back to the tribe. However, the <strong>data</strong> are not sent back to the tribe <strong>in</strong> a <strong>use</strong>ful format. Much of the<strong>data</strong> on American <strong>Indian</strong>s/Alaska Natives are lumped <strong>in</strong>to the “other” category <strong>in</strong> these large <strong>data</strong> sets.Aggregate <strong>data</strong> sent to the BIA are never retrieved aga<strong>in</strong>.Several years ago, the Harvard School of Public Health wanted to <strong>in</strong>clude the Passamaquoddy <strong>in</strong> astudy of rural access to mental health services <strong>and</strong> supports. The tribe agreed to the study with twoconditions: that local community <strong>in</strong>terviewers would conduct all <strong>in</strong>terviews, <strong>and</strong> that no <strong>tribal</strong> recordswould be taken away from the reservation. The Harvard School of Public Health agreed to tra<strong>in</strong> local<strong>in</strong>terviewers. However, when the tribe advised the researchers that some of the questions <strong>in</strong> the<strong>in</strong>terview set were culturally <strong>in</strong>appropriate or unacceptable breeched of protocol, the researchersref<strong>use</strong>d to change them. Ultimately, the study was never completed. Harvard researchers, however,did attempt to remove <strong>data</strong> files before the end of the study. The Passamaquoddy were alsodisappo<strong>in</strong>ted that any <strong>in</strong>formation about the study was never sent back to the tribe.The above experience contrasts with a more recent, <strong>and</strong> positive one. The University of Arizona has was<strong>in</strong>terested <strong>in</strong> work<strong>in</strong>g with the Passamaquoddy to study a possible genetic l<strong>in</strong>k between American<strong>Indian</strong>/Alaska Native DNA <strong>and</strong> substance ab<strong>use</strong>. The University was will<strong>in</strong>g to follow very str<strong>in</strong>gentprotocols, so the tribe gave them permission to complete the study.Although unwritten, the Passamaquoddy Tribe has developed a clear protocol. Before a study isapproved, the Passamaquoddy Tribe wants to know how <strong>data</strong> will be <strong>use</strong>d <strong>and</strong> must give formalpermission. When <strong>tribal</strong> members (adult or child) are <strong>in</strong>terviewed, formal consent is required. EvenCase Studies <strong>in</strong> Tribal Data Collection <strong>and</strong> Use<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association49


students from local universities must follow this protocol. Fund<strong>in</strong>g agencies are also allowed to collectthe <strong>data</strong> they need, but only with <strong>in</strong>formed consent. The state can look at <strong>data</strong> but cannot take any filesor <strong>data</strong> from the reservation. The tribe owns all <strong>data</strong> produced at the site.Data is seen as a ResourceThe <strong>data</strong> produced by the Passamaquoddy Tribe is <strong>use</strong>ful <strong>in</strong> grant applications, IHS presentations, <strong>and</strong><strong>in</strong> showcas<strong>in</strong>g programs at conferences <strong>and</strong> Systems of Care meet<strong>in</strong>gs. Tribal representatives also <strong>use</strong><strong>tribal</strong> <strong>data</strong> <strong>in</strong> tra<strong>in</strong><strong>in</strong>g sessions <strong>and</strong> for design<strong>in</strong>g <strong>and</strong> budget<strong>in</strong>g current <strong>and</strong> future programs.Staff have learned how to measure <strong>and</strong> package <strong>data</strong> for these <strong>use</strong>s <strong>and</strong> are able to complete their own<strong>studies</strong> on, for example, multi-generational historical trauma related to loss of culture, l<strong>and</strong>, source of<strong>in</strong>come, etc., <strong>and</strong> the impact on families—a study they are now work<strong>in</strong>g on through the University ofMa<strong>in</strong>e, which is based on 30 years of <strong>data</strong>.The tribe’s Human Services budget is prioritized based on <strong>data</strong> collected on-site. The director presentsthese <strong>data</strong> to the <strong>tribal</strong> council <strong>and</strong> <strong>use</strong>s them to educate people regard<strong>in</strong>g the client population (e.g.,type of services, dem<strong>and</strong>, community needs, <strong>and</strong> trends).Lack of Data <strong>and</strong> BarriersThe human services director has been <strong>in</strong> her position for a long time <strong>and</strong> is able to obta<strong>in</strong> all the<strong>in</strong>formation she needs locally. This is helped by the fact that the community is small, <strong>and</strong> she knowseveryone. The Passamaquoddy Tribe does not feel there are any barriers to obta<strong>in</strong><strong>in</strong>g the <strong>data</strong> it needs<strong>in</strong>ternally. The tribe has recently decided to hire an evaluator to help gather <strong>tribal</strong> <strong>data</strong> <strong>and</strong> to <strong>in</strong>terpret<strong>and</strong> analyze it on a full-time basis. This is an <strong>in</strong>dication of the amount of <strong>data</strong> available <strong>and</strong> its potential<strong>use</strong>fulness to the tribe.Tra<strong>in</strong><strong>in</strong>g <strong>and</strong> Staff DevelopmentStaff is tra<strong>in</strong>ed to <strong>use</strong> <strong>data</strong> <strong>collection</strong> tools, <strong>and</strong> tra<strong>in</strong><strong>in</strong>g is l<strong>in</strong>ked to underst<strong>and</strong><strong>in</strong>g the bigger picture <strong>and</strong>the importance of accurate documentation. There are no barriers to provid<strong>in</strong>g quality tra<strong>in</strong><strong>in</strong>g to staff <strong>in</strong>the <strong>collection</strong> <strong>and</strong> <strong>use</strong> of <strong>data</strong>.ThemesThemes identified at the Passamaquoddy site were as follows: Confidentiality: The confidentiality of <strong>data</strong> is carefully protected, both <strong>in</strong>ternally <strong>and</strong> fromexternal agencies <strong>and</strong> persons. Requests from external researchers are carefully reviewed <strong>and</strong>recent permission for research has been granted. Formal consent is required for all <strong>in</strong>terviews of<strong>tribal</strong> membersCase Studies <strong>in</strong> Tribal Data Collection <strong>and</strong> Use<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association50


Tribal l ownership of <strong>data</strong>: The tribe owns all <strong>data</strong> produced at the site. The state, for example,can look at <strong>data</strong> but cannot remove files or <strong>data</strong> from the site. Relationship to fund<strong>in</strong>g agencies: Data required by outside fund<strong>in</strong>g agencies is provided tothese funders by the tribe, but is generally of limited <strong>use</strong> to the tribe. Although the tribe wouldlike to be able to compare its <strong>data</strong> with that of other tribes, there is no mechanism or resource todo this. Reliance on unwritten protocols: Although there are currently no written polices regard<strong>in</strong>g the<strong>collection</strong>, <strong>use</strong>, or shar<strong>in</strong>g of <strong>data</strong>, the rules are clear <strong>and</strong> understood by <strong>tribal</strong> members, <strong>tribal</strong>agencies, local university researchers, <strong>and</strong> others who have had access to <strong>data</strong> <strong>in</strong> the past orthe present. Value of <strong>data</strong>:a: Data is collected by the tribe <strong>and</strong> <strong>use</strong>d for Passamaquoddy Human Services,budget<strong>in</strong>g, grant applications, conference presentations, tra<strong>in</strong><strong>in</strong>g, <strong>and</strong> design<strong>in</strong>g <strong>and</strong> budget<strong>in</strong>gfuture programs. The tribe is also able to complete sophisticated longitud<strong>in</strong>al <strong>studies</strong> through theauspices of a local university.SummaryThe Passamaquoddy Health <strong>and</strong> Human Services director <strong>and</strong> staff have been able to collect, analyze,<strong>and</strong> <strong>in</strong>terpret <strong>data</strong> collected on-site to meet the many needs of their own people <strong>and</strong> govern<strong>in</strong>g body.Their system is a model for other tribes that want to create <strong>and</strong> ma<strong>in</strong>ta<strong>in</strong> good <strong>in</strong>ternal records <strong>and</strong>record-keep<strong>in</strong>g methods.Case Studies <strong>in</strong> Tribal Data Collection <strong>and</strong> Use<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association51


CHAPTER 6:ST. REGIS MOHAWK NATIONCase Study Subject ProfileThe St. Regis Mohawk Nation is one of six members of the Iroquois Confederacy. The other fivemembers are the Seneca, Cayuga, Onondaga, Oneida, <strong>and</strong> Tuscarora Nations. The Mohawk reservationstraddles the border of the United States <strong>and</strong> Canada along the St. Lawrence River. It spans parts oftwo counties of New York State (St. Lawrence <strong>and</strong> Frankl<strong>in</strong>) <strong>and</strong> two prov<strong>in</strong>ces of Canada (Ontario <strong>and</strong>Quebec). In the United States, the reservation <strong>in</strong>cludes approximately 14,000 acres <strong>and</strong> <strong>in</strong> Canadaapproximately 7,500 acres. Tribal councils have been created on both sides of the reservation, withthree chiefs, three sub-chiefs, <strong>and</strong> a <strong>tribal</strong> clerk on the American side <strong>and</strong> one elected chief <strong>and</strong> 11councilors on the Canadian sideThe <strong>in</strong>clusion of the St. Regis Mohawk Nation was based on three key factors. First, it is a reservationbased<strong>tribal</strong> community with an over 200+ year history with the federal government. Second, it is aNation that is split by an <strong>in</strong>ternational border where <strong>data</strong> issues <strong>and</strong> political boundaries <strong>in</strong>tersect withnegative consequences (while few tribes are split <strong>in</strong>ternationally, several are split among states). Third,the Mohawk Nation has a long history of provid<strong>in</strong>g services, of strong advocacy <strong>in</strong> work<strong>in</strong>g with the state,<strong>and</strong> of ma<strong>in</strong>ta<strong>in</strong><strong>in</strong>g the strengths of its traditions <strong>and</strong> language.F<strong>in</strong>d<strong>in</strong>gsAccord<strong>in</strong>g to child welfare <strong>and</strong> human services directors at the St. Regis Mohawk Nation, the <strong>data</strong> <strong>use</strong>dto apply for grants or that are sent to New York State for <strong>in</strong>clusion <strong>in</strong> statistical reports are generally<strong>in</strong>accurate. This is largely beca<strong>use</strong> of jurisdictional problems result<strong>in</strong>g from the fact that the MohawkNation is located <strong>in</strong> both the United States <strong>and</strong> Canada. While there are about 1,400 children <strong>and</strong>adolescents enrolled <strong>in</strong> the Mohawk Nation on the American side of the reservation, there are anadditional 4,000-5,000 <strong>in</strong> the Akwesasne part of the tribe on the Canadian side; while there are about10,000 enrolled Mohawks on the American side, there are, <strong>in</strong> reality, 15,000-19,000 enrolled overall.<strong>Child</strong>ren <strong>and</strong> adolescents move freely between the two sides of the Mohawk reservation <strong>and</strong> haverelatives, friends, <strong>and</strong> places to live on both sides.American child welfare staff work <strong>in</strong>formally with counterparts <strong>in</strong> Montreal agencies for transferal ofjurisdiction when appropriate, <strong>and</strong> both sides try to keep the other side <strong>in</strong>formed of what is go<strong>in</strong>g on withtheir <strong>case</strong>s. However, the number of children <strong>and</strong> adolescent members of the Mohawk Nation thatappear <strong>in</strong> <strong>data</strong> produced by the American side of the Nation <strong>and</strong> by New York State <strong>and</strong> the U.S. federalgovernment are consistently under-reported, even <strong>in</strong> federal U.S. Census Bureau <strong>data</strong>. The St. RegisMohawk Nation has been work<strong>in</strong>g to change the jurisdictional problems by br<strong>in</strong>g<strong>in</strong>g Canadian serviceprogram adm<strong>in</strong>istrators together with New York State representatives <strong>and</strong> the Nation. Their goal is toobta<strong>in</strong> more accurate <strong>data</strong> <strong>and</strong> to improve service coord<strong>in</strong>ation.Case Studies <strong>in</strong> Tribal Data Collection <strong>and</strong> Use<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association52


Although <strong>tribal</strong> leaders see the need for accurate <strong>data</strong>, they value cultural aspects of care more thannumbers when plann<strong>in</strong>g programs for their children. Hav<strong>in</strong>g accurate numbers is secondary to know<strong>in</strong>gthe community <strong>and</strong> the needs of children <strong>and</strong> families through knowledge of culture <strong>and</strong> tradition.Data SystemsThe St. Regis Mohawk Nation <strong>use</strong>s three large <strong>data</strong> systems operated by New York State to collect childwelfare <strong>data</strong>. Forms are kept on file at St. Regis, <strong>and</strong> electronic versions are sent to the state. New YorkState sends monthly reports back to the Nation based on the numbers they submit, <strong>and</strong> <strong>in</strong>formation isput <strong>in</strong>to reports <strong>and</strong> graphs for <strong>in</strong>ternal <strong>use</strong>.Each human service program also has an <strong>in</strong>ternal computer system that is <strong>use</strong>d to generate <strong>data</strong> to besent to the human services director. Each program has a separate system with backups on disk. Thehuman services director gives each program discretion <strong>in</strong> develop<strong>in</strong>g its own policies, procedures, <strong>and</strong>service delivery systems.There are some basic criteria for forms, <strong>and</strong> these are based on the requirements of funders. Examplesof the type of <strong>in</strong>formation collected are number of persons <strong>in</strong> the ho<strong>use</strong>hold, foster care <strong>in</strong>formation,contacts, <strong>case</strong>load, <strong>in</strong>cident reports, wait<strong>in</strong>g lists, <strong>and</strong> such personal <strong>in</strong>formation as birthdays <strong>and</strong> socialsecurity numbers. For some reports, name, address, gender, age, <strong>and</strong> diagnosis are <strong>in</strong>cluded.Information is collected on the servic<strong>in</strong>g needs of a specific child (placement <strong>and</strong> prevention),disabilities are identified, <strong>and</strong> sometimes “everyth<strong>in</strong>g on the family unit” is sent to the state. Informationon ab<strong>use</strong> <strong>and</strong> neglect is collected by the state workers who accompany the Mohawk staff on<strong>in</strong>vestigations. The Nation also collects <strong>and</strong> ma<strong>in</strong>ta<strong>in</strong>s their own <strong>data</strong>.Relationships, Accountability, <strong>and</strong> OwnershipEntities that fund programs for the St. Regis Mohawk Nation can audit the systems they fund, but theMohawk Nation owns the <strong>data</strong>. The state of New York has full access to records <strong>and</strong> <strong>data</strong> are rout<strong>in</strong>elyshared with the state without hesitation. However, there is some concern about how <strong>in</strong>formation ish<strong>and</strong>led once it gets to the state. Occasionally the state has misplaced <strong>data</strong> submitted by the Nation.For example, a recent <strong>Child</strong> <strong>and</strong> Family Service Review (CFSR) report produced <strong>in</strong> New York State, forexample, did not <strong>in</strong>clude <strong>data</strong> from the Mohawk Nation, even though St. Regis had submitted it.The state sometimes compla<strong>in</strong>s that the numbers the tribe provides are <strong>in</strong>correct. This was especiallytrue <strong>in</strong> the past when the Nation did not provide accurate <strong>data</strong> to New York State beca<strong>use</strong> of concernsthat families had about shar<strong>in</strong>g their personal <strong>in</strong>formation. These concerns have faded as families haveseen that shar<strong>in</strong>g of <strong>in</strong>formation has benefited them.Case Studies <strong>in</strong> Tribal Data Collection <strong>and</strong> Use<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association53


Concerns about accurate <strong>data</strong> are further complicated by the fact that the region is located <strong>in</strong> an<strong>in</strong>ternational border. As one <strong>in</strong>terviewee commented, “It’s all perspective. As soon as you say‘<strong>in</strong>ternational,’ immediately, beca<strong>use</strong> of a lack of education, people are hesitant to move <strong>in</strong>to that area.Nobody has that experience.”The <strong>Child</strong> <strong>and</strong> Family Service Review (CFSR) process has led to improved relationships with the state,as the states need to demonstrate coord<strong>in</strong>ation with American <strong>Indian</strong>/Alaska Native tribes as part of theircompliance process. The Mohawk Nation has served as a model for other members of the IroquoisConfederacy <strong>in</strong> deal<strong>in</strong>g with the state <strong>in</strong> the <strong>Child</strong> <strong>and</strong> Family Service Review process.The relationship with the government of Canada is more complex-as both the American <strong>and</strong> Canadianofficials must be <strong>in</strong>volved-<strong>and</strong> “both have isolationist tendencies.” Accord<strong>in</strong>g to <strong>tribal</strong> adm<strong>in</strong>istrators, IHSdoes have an <strong>in</strong>ternational agreement with Canada, but this does not affect other human service or childwelfare programs.Use of Data <strong>and</strong> Data as a ResourceData collected by St. Regis Human Services goes to the <strong>tribal</strong> council, <strong>and</strong> some <strong>in</strong>formation appears <strong>in</strong>the annual newsletter for fellow staff. There is general report<strong>in</strong>g to staff on tra<strong>in</strong><strong>in</strong>gs <strong>and</strong> upcom<strong>in</strong>gevents. Each human service unit sends a report to the director of human services monthly.Some <strong>data</strong> are <strong>use</strong>d to write grant proposals. For example, a recent application for an <strong>in</strong>tergenerationalday care program <strong>in</strong>cluded the number of children currently on a wait<strong>in</strong>g list for day care <strong>in</strong> order toverify the need for program expansion.Data are <strong>use</strong>d to some extent for budget<strong>in</strong>g decisions. Numbers are <strong>use</strong>d to identify the level of need <strong>in</strong>different areas. However, need is not normally questioned <strong>and</strong> is not driven by numbers. If more <strong>case</strong>sare added, adm<strong>in</strong>istrators submit the numbers for reimbursement, <strong>and</strong> the additional <strong>case</strong>s aresupported f<strong>in</strong>ancially. One <strong>in</strong>terviewee stated, “The state sees that <strong>and</strong> does not question it.”When agencies, organizations, or government offices want to collect <strong>data</strong> from the St. Regis MohawkNation, they must go through the <strong>tribal</strong> council. Recently the Adm<strong>in</strong>istration for <strong>Child</strong>ren <strong>and</strong> Families(ACF) of the federal Department of Health <strong>and</strong> Human Services wanted to conduct an on-site survey.Generally, the Nation is skeptical about federal <strong>and</strong> state agencies <strong>and</strong> does not want to release or giveaccess to demographics. The director of human services met with the <strong>tribal</strong> council, <strong>and</strong> it was decidedthat, as a result of their positive experience with the CFSR, the Nation could benefit from the survey.ACF was given permission to collect <strong>data</strong> directly on-site.Case Studies <strong>in</strong> Tribal Data Collection <strong>and</strong> Use<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association54


Lack of Data <strong>and</strong> BarriersAccord<strong>in</strong>g to staff <strong>in</strong>terviewed at the St. Regis Mohawk Nation, <strong>data</strong> alone have not been able todescribe the needs of their children. Beca<strong>use</strong> of the <strong>data</strong> <strong>in</strong>accuracies expla<strong>in</strong>ed above, <strong>data</strong> tells thestory only to a limited extent. The larger story requires qualitative <strong>data</strong> which more accurately describesa balance between cultures. “Just look<strong>in</strong>g at the numbers doesn’t show why kids are at risk <strong>and</strong> whythere is dysfunction,” said an <strong>in</strong>terviewee. The reasons are largely attributed to the past. The placementof large numbers of children <strong>in</strong> residential schools has led to parents who lack parent<strong>in</strong>g skills. Today,people have to work non-traditional hours, children are sent off-reservation due to educational needs,<strong>and</strong> this leads to culture shock. There is an <strong>in</strong>herent dysfunction due to a lack of balance betweenma<strong>in</strong>stream values <strong>and</strong> values rooted <strong>in</strong> the Mohawk culture. Said one <strong>in</strong>terview participant, “These arecross-systems kids.”The most accurate <strong>and</strong> significant <strong>in</strong>formation that fund<strong>in</strong>g agencies need is not told through <strong>data</strong>. One<strong>in</strong>terviewee commented, “You need to educate them about Akwesasne <strong>and</strong> Mohawk culture <strong>and</strong> how itperta<strong>in</strong>s to the level of need, how the past relates to what we are do<strong>in</strong>g now.” Staff at St. Regis felt that ifthey could only get the idea of culture across to fund<strong>in</strong>g agencies, funders would underst<strong>and</strong> the needsof the children better than if they had accurate <strong>data</strong> for them.When fund<strong>in</strong>g requests are made, the tribe wants to be able to say what is needed-often a variety oftraditional <strong>and</strong> ma<strong>in</strong>stream approaches specific to the Mohawk way. The hope is that an underst<strong>and</strong><strong>in</strong>gof tradition <strong>and</strong> history by the funders will preclude the <strong>use</strong> of hard <strong>data</strong> to support Mohawk needs. Inthe <strong>in</strong>tergenerational day care grant application, for example, the need for the program was describednot only by the numbers of children on a wait<strong>in</strong>g list but also primarily <strong>in</strong> terms of the <strong>in</strong>tangible results ofgiv<strong>in</strong>g young children regular access to <strong>tribal</strong> elders. The two programs, one for the elderly <strong>and</strong> one forchildren, will be located <strong>in</strong> the same build<strong>in</strong>g with a common area <strong>in</strong> between. “Essentially, this type ofcenter will allow our Elders many opportunities to share their experiences, knowledge <strong>and</strong> our culturewith the children <strong>and</strong> child care staff.” (St. Regis Mohawk Nation, Application to NYS Office of <strong>Child</strong>ren<strong>and</strong> Family Services, 2003)Tra<strong>in</strong><strong>in</strong>g <strong>and</strong> Staff DevelopmentTra<strong>in</strong><strong>in</strong>g <strong>in</strong> <strong>data</strong> <strong>collection</strong>, entry, <strong>and</strong> submission is provided primarily by the New York State agenciesthat want the <strong>data</strong>. Each discipl<strong>in</strong>e has different requirements for tra<strong>in</strong><strong>in</strong>g <strong>and</strong> tra<strong>in</strong>s staff to meet theneeds of that agency. St. Regis would like to see more “tra<strong>in</strong> the tra<strong>in</strong>er” efforts so that the tribe couldhave an <strong>in</strong>ternal person to provide tra<strong>in</strong><strong>in</strong>g for newly hired <strong>tribal</strong> members. The staff needs tra<strong>in</strong><strong>in</strong>g <strong>in</strong>order to h<strong>and</strong>le a higher level of complexity <strong>in</strong> their child welfare <strong>case</strong>loads, such as <strong>case</strong>loads <strong>in</strong>volv<strong>in</strong>ggroup homes, but they have to leave the reservation to obta<strong>in</strong> this type of tra<strong>in</strong><strong>in</strong>g as well.Case Studies <strong>in</strong> Tribal Data Collection <strong>and</strong> Use<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association55


ThemesThemes aris<strong>in</strong>g from discussion at the St. Regis Mohawk Nation site are as follows: Jurisdictional issues: Due to the fact that the Mohawk Nation is located <strong>in</strong> both Canada <strong>and</strong> theUnited States, it is not possible to obta<strong>in</strong> accurate population-based <strong>data</strong>. The tribe is work<strong>in</strong>gwith counterparts <strong>in</strong> Canada to improve the efficiency of services <strong>and</strong> accuracy of <strong>data</strong>. Value of <strong>data</strong>/ Value of cultural considerations: Tribal leaders see the need for accurate <strong>data</strong>,but value cultural aspects of care more than numbers when plann<strong>in</strong>g programs for their children.The Mohawk Nation would like to be able to expla<strong>in</strong> need to outside agencies based on history<strong>and</strong> tradition rather than on statistics. With<strong>in</strong> the community, <strong>data</strong> has not been <strong>use</strong>d to def<strong>in</strong>eneed; rather, need is based on cultural underst<strong>and</strong><strong>in</strong>gs. Relationship with other agencies: The tribe sends <strong>data</strong> electronically to New York State,receives monthly reports back, <strong>and</strong> provides full access of its <strong>data</strong> to the state. Externalresearchers other than the state must go before the <strong>tribal</strong> council for approval of their researchproposal. Tribal adm<strong>in</strong>istrators hope that culturally-based <strong>in</strong>formation on needs can be passedalong to fund<strong>in</strong>g agencies over time through network<strong>in</strong>g <strong>and</strong> education by American<strong>Indian</strong>/Alaska Native people <strong>and</strong> groups. Tribal ownership of <strong>data</strong>: Fund<strong>in</strong>g agencies can access <strong>data</strong> for the programs they fund, butthe tribe owns the <strong>data</strong>. Use of <strong>tribal</strong> <strong>data</strong>: Each <strong>in</strong>ternal unit of St. Regis Human Services has its own <strong>data</strong> report<strong>in</strong>gsystem that is <strong>use</strong>d to create monthly reports to the director. Data are <strong>use</strong>d to look at trends <strong>and</strong>changes <strong>in</strong> level of need <strong>and</strong> for grant applications. Data are <strong>use</strong>d to look at trends <strong>and</strong>changes <strong>in</strong> level of need <strong>and</strong> for grant applications. Data is also sent to the <strong>tribal</strong> council. Tra<strong>in</strong><strong>in</strong>g: Tra<strong>in</strong><strong>in</strong>g <strong>in</strong> <strong>data</strong> <strong>collection</strong> <strong>and</strong> <strong>use</strong> is provided to the St. Regis Mohawk Nation by NewYork State agencies that require the <strong>data</strong>. The Nation would like to obta<strong>in</strong> “tra<strong>in</strong> the tra<strong>in</strong>er”fund<strong>in</strong>g so they can have on-site tra<strong>in</strong>ers.SummaryThe St. Regis Mohawk Nation has been conv<strong>in</strong>ced of the efficacy of collect<strong>in</strong>g <strong>data</strong> for the state; <strong>in</strong>return, it has received fund<strong>in</strong>g for various human service programs <strong>and</strong> some aggregate <strong>data</strong> that ismarg<strong>in</strong>ally <strong>use</strong>ful to them. The <strong>data</strong> are only marg<strong>in</strong>ally <strong>use</strong>ful largely beca<strong>use</strong> of the <strong>in</strong>ternational natureof the Mohawk community, with half of the people located <strong>in</strong> the United States <strong>and</strong> half <strong>in</strong> Canada.Staff <strong>use</strong> numbers <strong>in</strong>ternally to see where programs are go<strong>in</strong>g <strong>in</strong> terms of an <strong>in</strong>crease or decrease <strong>in</strong>program attendance <strong>and</strong> <strong>use</strong>, but overall numbers are not important to the function of the mental health,child welfare, or other human services offices.There is a feel<strong>in</strong>g that numbers are not as important as culture <strong>and</strong> history <strong>in</strong> mak<strong>in</strong>g a <strong>case</strong> for more<strong>and</strong> better services to the tribe. Rather than present<strong>in</strong>g the numbers that funders request, the tribeCase Studies <strong>in</strong> Tribal Data Collection <strong>and</strong> Use<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association56


would like to teach fund<strong>in</strong>g agencies how to underst<strong>and</strong> the non-number-based Mohawk worldview. Inthis scenario, an argument based on cultural realities would provide obvious evidence of need withouthard <strong>data</strong>.Case Studies <strong>in</strong> Tribal Data Collection <strong>and</strong> Use<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association57


CHAPTER 7:POARCH BAND OF CREEK INDIANSCase Study Subject ProfileThe Poarch B<strong>and</strong> of Creek <strong>Indian</strong>s is a segment of the orig<strong>in</strong>al Creek Nation that avoided removal fromAlabama to the Oklahoma Territory. Hav<strong>in</strong>g acted as allies to the United States <strong>in</strong> the war of 1812, theb<strong>and</strong> had been given a l<strong>and</strong> grant by the federal government but had never been recognized as a“tribe” until an act of Congress <strong>in</strong> 1984. Today, there are over 2,200 members of the tribe, 315 of whomlive on a small “checkerboarded” reservation near Atmore, Alabama.S<strong>in</strong>ce federal recognition <strong>in</strong> 1984, the Poarch B<strong>and</strong> of Creek <strong>Indian</strong>s have developed a comprehensiveset of education, hous<strong>in</strong>g, social, <strong>and</strong> health services, as well as successful economic enterprises.In terms of federal recognition <strong>and</strong> fund<strong>in</strong>g, its services for children <strong>and</strong> families are fairly new.Relationships with surround<strong>in</strong>g communities, the six counties with which they <strong>in</strong>teract, <strong>and</strong> the stategovernment are also recent <strong>in</strong> terms of government-to-government relations. In only a few short years,this tribe has developed extensive services <strong>and</strong> has relied heavily on <strong>data</strong> <strong>in</strong> its process of start<strong>in</strong>g fromscratch <strong>and</strong> develop<strong>in</strong>g the operation of services.F<strong>in</strong>d<strong>in</strong>gsInterviewers reported that the Poarch B<strong>and</strong> of Creek <strong>Indian</strong>s regard gather<strong>in</strong>g <strong>and</strong> ma<strong>in</strong>ta<strong>in</strong><strong>in</strong>g current<strong>data</strong> as “very, very important.” When describ<strong>in</strong>g how the tribe feels about <strong>data</strong>, respondents said, “It’san accountability issue” <strong>and</strong> “It’s about survival” of <strong>tribal</strong> programs <strong>and</strong> the “well-be<strong>in</strong>g of thecommunity.” Data have been important to the tribe s<strong>in</strong>ce before its federal recognition <strong>in</strong> 1984. Theyhave had to “justify every need from scratch” <strong>and</strong> show that they could provide the needed services.Interviewees reported that every funder wants <strong>data</strong>. Renewal applications require utilization <strong>data</strong>. Otherapplications require demographic <strong>in</strong>formation <strong>and</strong> a justification of needs. As <strong>tribal</strong> programs havegrown, adm<strong>in</strong>istrators <strong>and</strong> directors have learned that “<strong>data</strong> is not just for funders” but rather someth<strong>in</strong>gthat is needed for plann<strong>in</strong>g <strong>and</strong> direction as well. The <strong>tribal</strong> planner reported feel<strong>in</strong>g “very supported” bythe tribe’s belief <strong>and</strong> active efforts <strong>in</strong> <strong>data</strong> <strong>collection</strong> <strong>and</strong> <strong>use</strong>. Other respondents reported a desire to domore by mov<strong>in</strong>g beyond demographics <strong>and</strong> service utilization to look at outcomes.Data regard<strong>in</strong>g children <strong>and</strong> families are <strong>in</strong> several forms <strong>and</strong> <strong>in</strong> several places. The <strong>tribal</strong> plann<strong>in</strong>goffice <strong>use</strong>s U.S. Census Bureau <strong>data</strong> <strong>and</strong> will <strong>use</strong> the new <strong>tribal</strong> census <strong>data</strong>. General community need<strong>and</strong> demographic <strong>in</strong>formation is primarily kept at the adm<strong>in</strong>istration level but is available acrossprograms for grant <strong>and</strong> contract applications. Service utilization, client <strong>data</strong>, <strong>and</strong> specific programneeds <strong>data</strong> appear to be kept at the program director level. Shar<strong>in</strong>g such <strong>data</strong> across departments isdone but requires communication <strong>and</strong> coord<strong>in</strong>ation that is sometimes difficult to achieve when the crossdepartmentalneed for <strong>data</strong> is not well understood or clearly justified. Programs are “protective” of theirCase Studies <strong>in</strong> Tribal Data Collection <strong>and</strong> Use<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association58


own <strong>data</strong>. This is beneficial <strong>in</strong> protect<strong>in</strong>g <strong>in</strong>formation that could be considered confidential but could bea barrier to underst<strong>and</strong><strong>in</strong>g <strong>and</strong> mak<strong>in</strong>g maximum <strong>use</strong> of the <strong>data</strong> available.Data SystemsIn the 1990s, the Poarch B<strong>and</strong> of Creek <strong>Indian</strong>s recognized the need <strong>and</strong> value of technology to collect<strong>data</strong>. Beg<strong>in</strong>n<strong>in</strong>g with a domestic violence prevention grant, <strong>tribal</strong> social services began us<strong>in</strong>g a programcalled “Case Watch.” Although the program has never reached its hoped for potential of crossdepartmental<strong>data</strong> shar<strong>in</strong>g, it has been a vital source of <strong>in</strong>formation for report<strong>in</strong>g service need <strong>and</strong>service utilization <strong>data</strong>. The <strong>tribal</strong> health program <strong>use</strong>s the IHS <strong>data</strong> system <strong>and</strong> has staff assigned tothe <strong>collection</strong> <strong>and</strong> storage of <strong>data</strong>. Recently, the <strong>tribal</strong> court system was awarded a grant that will allowthem to automate their records, which will help improve <strong>data</strong> <strong>collection</strong> <strong>and</strong> <strong>use</strong> <strong>in</strong>volv<strong>in</strong>g legal matters.Respondents report that, while <strong>in</strong>vestments have been made <strong>in</strong> software, the lack of a larger network<strong>and</strong> a way to share <strong>data</strong> across programs, systems, <strong>and</strong> even jurisdictions means that the <strong>data</strong> systemsare fractured <strong>and</strong> less efficient <strong>and</strong> effective than would be ideal. No policies exist <strong>and</strong> each programowns <strong>and</strong> is responsible for the ma<strong>in</strong>tenance <strong>and</strong> security of its own <strong>data</strong>. Persons <strong>in</strong>side the tribeseek<strong>in</strong>g <strong>data</strong> would beg<strong>in</strong> their search with the department head, who ma<strong>in</strong>ta<strong>in</strong>s pert<strong>in</strong>ent <strong>in</strong>formation.Decisions about provid<strong>in</strong>g <strong>data</strong> to others are made on a <strong>case</strong>-by-<strong>case</strong> basis <strong>and</strong> approached withcaution.As the tribe’s need <strong>and</strong> capacity for <strong>data</strong> grows, respondents <strong>in</strong>dicated that technical assistance wouldbe beneficial to ensure consistent <strong>and</strong> effective systems <strong>and</strong> <strong>use</strong> of <strong>data</strong>.Data Relationships, Accountability, <strong>and</strong> OwnershipThe key <strong>in</strong>formants <strong>in</strong>terviewed were not directly aware of <strong>data</strong> relationships outside the tribe. They didsurmise that the public schools, county government, <strong>and</strong> state vital statistics all collected <strong>data</strong> regard<strong>in</strong>g<strong>tribal</strong> members, but no mechanism currently exists to obta<strong>in</strong> <strong>data</strong> from those sources for mean<strong>in</strong>gful <strong>use</strong>by the tribe. One respondent <strong>in</strong>dicated that confusion of roles between <strong>tribal</strong> <strong>and</strong> county <strong>and</strong> stateservices can complicate <strong>data</strong> gather<strong>in</strong>g. For example, service utilization <strong>data</strong> may be duplicated <strong>in</strong>some service areas. Discussions regard<strong>in</strong>g ownership of <strong>data</strong> have not been <strong>in</strong>itiated, <strong>and</strong> crossjurisdiction shar<strong>in</strong>g of <strong>data</strong> is seen as an area for potential development.The most common type of <strong>data</strong> relationship that currently exists is with funders the tribe works withhoweverthese <strong>data</strong> relationships are currently one-way. That is, the tribe provides <strong>data</strong> <strong>in</strong> the form ofreports, but funders do not provide mean<strong>in</strong>gful <strong>in</strong>formation <strong>in</strong> return. Such <strong>in</strong>formation would be helpfulto the tribe <strong>in</strong> plann<strong>in</strong>g, look<strong>in</strong>g at trends, <strong>and</strong> respond<strong>in</strong>g to needs more effectively.Case Studies <strong>in</strong> Tribal Data Collection <strong>and</strong> Use<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association59


Key <strong>in</strong>formants <strong>in</strong>dicate that, <strong>in</strong> the past, some <strong>data</strong> have been mis<strong>use</strong>d by outsiders. Based on theunfortunate lesson of the past, the <strong>tribal</strong> leadership became justifiably guarded about shar<strong>in</strong>g <strong>data</strong>. Forexample, participation <strong>in</strong> this <strong>case</strong> study came only after a <strong>tribal</strong> official screened the project, reviewedthe <strong>in</strong>terview questions, <strong>and</strong> received assurances of <strong>tribal</strong> participation <strong>in</strong> review<strong>in</strong>g the results beforepublication.Use of Data or Data as a ResourceThe Poarch B<strong>and</strong> of Creek <strong>Indian</strong>s primarily <strong>use</strong>s <strong>data</strong> for strategic plann<strong>in</strong>g, fund<strong>in</strong>g, <strong>and</strong> developmentpurposes. Key <strong>in</strong>formants reported a desire to move toward the <strong>use</strong> of <strong>data</strong> for program plann<strong>in</strong>g <strong>and</strong>prioritiz<strong>in</strong>g, policy development, <strong>and</strong> evaluation. Respondents <strong>in</strong>dicated that tra<strong>in</strong><strong>in</strong>g <strong>and</strong> technicalassistance are needed to achieve broader <strong>use</strong>s of <strong>data</strong> <strong>in</strong> the future. As a general theme, key<strong>in</strong>formants reported us<strong>in</strong>g <strong>data</strong> found throughout the community for several reasons, <strong>in</strong>clud<strong>in</strong>g mostnotably for fund<strong>in</strong>g.Fund<strong>in</strong>g DevelopmentCurrently, the <strong>data</strong> focus of the Poarch B<strong>and</strong> of Creek <strong>Indian</strong>s is on assess<strong>in</strong>g needs <strong>and</strong> justification offund<strong>in</strong>g requests. The tribe has been very successful <strong>in</strong> attract<strong>in</strong>g national grants. In 1996, the tribecontracted with an outside firm to conduct a needs assessment. The <strong>data</strong> from this assessment is still <strong>in</strong><strong>use</strong> but is now seen as old <strong>and</strong> out-of-date. To keep the tribe competitive <strong>in</strong> grant applications, the <strong>tribal</strong>leadership felt that it was necessary to update this <strong>data</strong>. A decision was made to conduct a <strong>tribal</strong>census as a way to gather the necessary <strong>in</strong>formation. This <strong>tribal</strong> census is currently <strong>in</strong> the <strong>data</strong> analysis<strong>and</strong> report preparation phase. It will <strong>in</strong>form the <strong>tribal</strong> government about the needs of <strong>tribal</strong> members <strong>and</strong>will support the development of a 20-year strategic plan.Interviewees felt that program <strong>data</strong> will become even more important <strong>in</strong> the near future. As the tribebecomes more successful <strong>in</strong> its economic development enterprises, it will generate its own sources ofrevenue to support programs. There is a recognition that decisions regard<strong>in</strong>g budget priorities will<strong>in</strong>creas<strong>in</strong>gly need to be <strong>in</strong>formed by <strong>data</strong> at the program level.Case Studies <strong>in</strong> Tribal Data Collection <strong>and</strong> Use<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association60


Lack of Data <strong>and</strong> BarriersExternal BarriersAs cited earlier, agencies serv<strong>in</strong>g <strong>tribal</strong> members do not currently share <strong>data</strong>. There is currently nomechanism for the tribe to consistently receive <strong>data</strong> on education, mental health, juvenile justice, orother services provided by county, state, or private agencies. Even if <strong>data</strong> agreements could bereached <strong>and</strong> <strong>data</strong> shared, <strong>in</strong>formants worried that the <strong>data</strong> would not be reliable due to <strong>tribal</strong> membersnot be<strong>in</strong>g identified as “American <strong>Indian</strong>/Alaska Native” <strong>in</strong> the exist<strong>in</strong>g non-<strong>tribal</strong> service <strong>data</strong> availablefrom external sources.One respondent <strong>in</strong>dicated that more attention to form<strong>in</strong>g relationships with other agencies <strong>and</strong>jurisdictions that collect <strong>data</strong> would be beneficial to the tribe.Internal BarriersThe tribe is now <strong>in</strong> the process of analyz<strong>in</strong>g its <strong>tribal</strong> census. Until that is complete, grantwriters arerely<strong>in</strong>g on <strong>data</strong> from a 1996 study. Interviewers <strong>in</strong>dicate that it gets harder to attract fund<strong>in</strong>g the olderthe <strong>data</strong> gets. The <strong>tribal</strong> census was a large <strong>in</strong>vestment of time <strong>and</strong> resources but will elim<strong>in</strong>ate theproblem of <strong>in</strong>sufficient local <strong>data</strong> for a while.Resource <strong>and</strong> Capacity BarriersSoftware programs are assigned to programs as they are needed, <strong>in</strong>stead of connect<strong>in</strong>g all humanservice agencies <strong>and</strong> offices to a larger network where <strong>data</strong> could be shared or analyzed acrossprograms, yet some fund<strong>in</strong>g sources require report<strong>in</strong>g <strong>data</strong> from across programs. For example, aprevention grant may require coord<strong>in</strong>ation between law enforcement, social services, <strong>and</strong> the courts.Each agency provides some services, <strong>and</strong> each collects its own <strong>data</strong>. When report<strong>in</strong>g on services, it isa challenge to get an unduplicated count or to ensure that all services are reported.One respondent felt that tra<strong>in</strong><strong>in</strong>g on how to make better <strong>use</strong> of the <strong>data</strong> that does exist, such as U.S.Census Bureau <strong>data</strong>, would be beneficial.Lack of Data (Existence <strong>and</strong> Accuracy)Another barrier to the effective <strong>use</strong> of <strong>data</strong> reported was the <strong>in</strong>complete count provided by the nationalU.S. Census Bureau enumeration. While the tribe had high hopes that the 2000 U.S. Census would yieldmuch needed <strong>data</strong> locally, results were disappo<strong>in</strong>t<strong>in</strong>g.Respondents felt that on some occasions, a lack of current <strong>and</strong> reliable <strong>data</strong> contributed significantly tofailed grant proposals. Program directors worry about the <strong>use</strong> of numbers that are “estimates” <strong>and</strong> feelthat the risk of overstat<strong>in</strong>g need should be avoided. As stated by one respondent, “Credibility comeswith good <strong>data</strong>,” <strong>and</strong> “fund<strong>in</strong>g follows credibility.”Case Studies <strong>in</strong> Tribal Data Collection <strong>and</strong> Use<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association61


Tra<strong>in</strong><strong>in</strong>g <strong>and</strong> Staff DevelopmentTra<strong>in</strong><strong>in</strong>g <strong>in</strong> <strong>data</strong> <strong>collection</strong> <strong>and</strong> <strong>use</strong> has been specific to various software applications, grant report<strong>in</strong>g,census tak<strong>in</strong>g, <strong>and</strong> compliance with HIPAA-not part of ongo<strong>in</strong>g staff development. Key <strong>in</strong>formants feltthat more could be done to ensure that tra<strong>in</strong><strong>in</strong>g was provided across all <strong>tribal</strong> departments. Tra<strong>in</strong><strong>in</strong>g onhow to access US Census Bureau <strong>data</strong>, how to <strong>use</strong> <strong>and</strong> <strong>in</strong>terpret <strong>data</strong>, <strong>and</strong> how to look at trends wereideas offered for tra<strong>in</strong><strong>in</strong>g topics desired by the respondents.ThemesThere are several themes <strong>and</strong> issues connect<strong>in</strong>g the <strong>in</strong>terviews: Data is highly valued: The tribe sees <strong>data</strong> as a high priority. Importance of fund<strong>in</strong>g: Tribal fund<strong>in</strong>g depends on accurate <strong>and</strong> timely <strong>data</strong>. Control of <strong>data</strong>: Data ownership <strong>and</strong> <strong>use</strong> is valued by the tribe <strong>and</strong> among its departments. Self-reliance:Rely<strong>in</strong>g on itself to generate, ma<strong>in</strong>ta<strong>in</strong>, analyze, <strong>and</strong> report its own <strong>data</strong> is valued.This is evidenced by the recently conducted <strong>tribal</strong> census. Significant fear of mis<strong>use</strong>: There is a significant fear of mis<strong>use</strong> <strong>and</strong> distrust of outside <strong>data</strong>collectors or researchers based on past experiences. Automated <strong>data</strong> systems: Automated <strong>data</strong> systems are valued <strong>and</strong> <strong>use</strong>d but presentchallenges for cross-departmental <strong>data</strong> usage <strong>and</strong> coord<strong>in</strong>ation. Lack of written policies: With the exception of HIPAA compliance, the tribe currently has nowritten policies about <strong>data</strong>, but strong norms <strong>and</strong> values that guide practice. Need for relationships: Stronger <strong>data</strong> relationships with others who collect <strong>data</strong> would benefitthe tribe. Desire for formal tra<strong>in</strong><strong>in</strong>g <strong>and</strong> capacity build<strong>in</strong>g on <strong>data</strong>: There is a desire for formal tra<strong>in</strong><strong>in</strong>g<strong>and</strong> capacity build<strong>in</strong>g on <strong>data</strong>. This <strong>in</strong>cludes <strong>data</strong> <strong>collection</strong>, analysis, <strong>and</strong> <strong>use</strong>, which arecurrently lack<strong>in</strong>g but strongly desired.SummaryThe Poarch B<strong>and</strong> of Creek <strong>Indian</strong>s has successfully <strong>use</strong>d <strong>data</strong> <strong>and</strong> has recognized its power <strong>and</strong> value<strong>in</strong> the development <strong>and</strong> expansion of <strong>tribal</strong> services. The strong value on <strong>data</strong> is expressed <strong>in</strong> the tribe’scaution about shar<strong>in</strong>g <strong>data</strong> with outsiders <strong>and</strong> by its decision to conduct its own <strong>tribal</strong> census. The tribehas taken advantage of <strong>and</strong> benefited from technology but faces a new generation of challengesregard<strong>in</strong>g the most efficient <strong>and</strong> effective <strong>use</strong> of that technology. The Poarch B<strong>and</strong> of Creek <strong>Indian</strong>s areanxious <strong>and</strong> poised to <strong>use</strong> <strong>data</strong> more extensively <strong>and</strong> more effectively <strong>and</strong> are constantly striv<strong>in</strong>g tobuild their <strong>in</strong>ternal capacity to control their own story.Case Studies <strong>in</strong> Tribal Data Collection <strong>and</strong> Use<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association62


CHAPTER 8: SUMMARY OF CROSS-SITE SITE FINDINGSSummaryThe health <strong>and</strong> overall wellness of American <strong>Indian</strong>/Alaska Native children cont<strong>in</strong>ues to be threatened bya lack of services, <strong>and</strong> this lack of services appears to be l<strong>in</strong>ked to a lack of <strong>in</strong>formation about the needsof <strong>tribal</strong> children <strong>and</strong> communities. Policymakers at the <strong>tribal</strong>, state, <strong>and</strong> federal level need <strong>in</strong>formationabout where to spend valuable <strong>and</strong> limited resources. This type of <strong>in</strong>formation has, to date, beenseriously lack<strong>in</strong>g or compromised by several factors. These factors <strong>in</strong>clude the follow<strong>in</strong>g: poorrelationships between <strong>tribal</strong> <strong>and</strong> state govern<strong>in</strong>g bodies lead<strong>in</strong>g to a lack of <strong>data</strong>-shar<strong>in</strong>g; <strong>in</strong>adequate or<strong>in</strong>complete <strong>data</strong> <strong>collection</strong> by federal agencies, such as the BIA or IHS charged with <strong>data</strong> <strong>collection</strong>;lack of resources at the <strong>tribal</strong> level to collect <strong>and</strong> analyze <strong>data</strong>; <strong>and</strong> a history of <strong>tribal</strong> distrust of outsideresearchers based on mis<strong>use</strong> or misrepresentation of <strong>data</strong> <strong>in</strong> the past. The result is that little accurate<strong>data</strong> exists regard<strong>in</strong>g the needs of American <strong>Indian</strong>/Alaska Native children.This project surveyed five <strong>tribal</strong> communities <strong>in</strong> order to outl<strong>in</strong>e the extent of the problem of <strong>data</strong><strong>collection</strong> <strong>and</strong> to suggest ways to rectify it. The five communities were: Feather River Behavioral Health Services Portl<strong>and</strong>, Oregon, Urban American <strong>Indian</strong>/Alaska Native Community Passamaquoddy Tribe, <strong>Indian</strong> Township St. Regis Mohawk Nation Poarch B<strong>and</strong> of Creek <strong>Indian</strong>sF<strong>in</strong>d<strong>in</strong>gs are presented <strong>in</strong> these areas: values underly<strong>in</strong>g <strong>data</strong> <strong>collection</strong>; <strong>tribal</strong> policies; exist<strong>in</strong>g <strong>data</strong>systems; <strong>data</strong> relationships with outside groups; <strong>data</strong> as a resource; impact <strong>and</strong> barriers regard<strong>in</strong>g lackof <strong>data</strong>; <strong>and</strong> tra<strong>in</strong><strong>in</strong>g <strong>and</strong> staff development regard<strong>in</strong>g the <strong>use</strong> of <strong>data</strong>.The study found strik<strong>in</strong>g similarities across these disparate sites. These <strong>in</strong>clude the follow<strong>in</strong>g: Accurate <strong>and</strong> reliable <strong>data</strong> that respect confidentiality are highly valued. These sites have dedicated considerable time <strong>and</strong> resources to <strong>data</strong> <strong>collection</strong>, with strongresults. Lack of resources has led to some creative solutions to <strong>data</strong> <strong>collection</strong>. The <strong>use</strong> of <strong>tribal</strong> <strong>data</strong> has led to improved relationships with other jurisdictions. Data that are collected by American <strong>Indian</strong>/Alaska Native communities or agencies cont<strong>in</strong>ue tobe seen as <strong>in</strong>accurate or unreliable by other jurisdictions. Data provided to funders by tribes are seldom returned <strong>in</strong> a <strong>use</strong>able form. Redundant <strong>data</strong> entry is required by the many overlapp<strong>in</strong>g systems of <strong>data</strong> report<strong>in</strong>g required of<strong>tribal</strong> sites.Case Studies <strong>in</strong> Tribal Data Collection <strong>and</strong> Use<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association63


Negative historical experiences with outside researchers is universal <strong>and</strong> leads to reluctance toparticipate <strong>in</strong> more <strong>studies</strong>. Inaccurate <strong>and</strong> unreliable <strong>data</strong> from outside sources are sometimes <strong>use</strong>d to the detriment ofAmerican <strong>Indian</strong>/Alaska Native programs. Tribal <strong>data</strong> <strong>collection</strong> is driven by a strong leader, acute need, or funder expectations. Policies, coord<strong>in</strong>ated <strong>data</strong> systems, <strong>and</strong> <strong>in</strong>tegrated tra<strong>in</strong><strong>in</strong>g approaches <strong>in</strong> <strong>data</strong> <strong>collection</strong> <strong>and</strong>analysis have generally not been developed at these sites.Underly<strong>in</strong>g ValuesValues about <strong>data</strong> among the five <strong>case</strong> study sites were strongly consistent with few exceptions. Allsites but one reported a high value on <strong>data</strong>, with two of the four go<strong>in</strong>g beyond to provide examples ofappreciation or prioritization of <strong>data</strong> <strong>collection</strong> <strong>and</strong> <strong>use</strong>. Several respondents were enthusiastic,describ<strong>in</strong>g their <strong>data</strong> <strong>collection</strong> <strong>and</strong> <strong>use</strong> efforts as “excit<strong>in</strong>g.” The fifth site reported an appreciation foraccurate <strong>data</strong> but also reported that problems with reliability <strong>and</strong> accuracy of exist<strong>in</strong>g <strong>data</strong> precludedthem from be<strong>in</strong>g able to value <strong>data</strong> as much as they would like to currently. The same site reportedvalu<strong>in</strong>g their own <strong>in</strong>digenous cultural knowledge as a form of <strong>data</strong> but felt that it was unvalued by others.Two sites expressed a direct l<strong>in</strong>k between life <strong>and</strong> death for <strong>tribal</strong> members <strong>and</strong> the availability of <strong>data</strong>.Two others l<strong>in</strong>ked the availability of reliable <strong>data</strong> to the survival of programs.Four of five sites are actively engaged <strong>in</strong> self-directed <strong>data</strong> gather<strong>in</strong>g, <strong>and</strong> the fifth is <strong>in</strong>volved with <strong>data</strong><strong>collection</strong> for report<strong>in</strong>g purposes. One site expressed a strong sense of pride <strong>in</strong> the successesachieved <strong>in</strong> <strong>data</strong> <strong>collection</strong>, <strong>use</strong>, <strong>and</strong> related outcomes. Another site self-<strong>in</strong>itiated a <strong>tribal</strong> census toclose gaps <strong>in</strong> exist<strong>in</strong>g <strong>data</strong> <strong>and</strong> to ensure quality control <strong>and</strong> availability while another site reported thatreliable <strong>data</strong> <strong>collection</strong> was a necessity.All of the participat<strong>in</strong>g sites share a value on <strong>and</strong> prioritize control of their own <strong>data</strong> <strong>and</strong> are stronglyprotective of their <strong>data</strong> <strong>and</strong> the confidentiality of their clients <strong>and</strong>/or <strong>tribal</strong> members. One site’sprotection of its <strong>data</strong> has reportedly tempered over time as control of <strong>data</strong> has empowered services.This community expressed a value for help<strong>in</strong>g others, (e.g. county, private agencies) with qualityrelevant (non-identifiable) <strong>data</strong>. Despite valu<strong>in</strong>g control of their own <strong>data</strong>, two sites reported valu<strong>in</strong>g the<strong>use</strong> of outside evaluators to enhance the <strong>collection</strong> <strong>and</strong> <strong>use</strong> of <strong>data</strong>.Four of five sites actively <strong>use</strong> <strong>data</strong> <strong>in</strong> multiple ways. Three of those expressed hav<strong>in</strong>g a larger vision forthe <strong>collection</strong> <strong>and</strong> <strong>use</strong> of <strong>data</strong>. Data was viewed as <strong>in</strong>form<strong>in</strong>g decision mak<strong>in</strong>g, giv<strong>in</strong>g a competitiveadvantage, <strong>and</strong> provid<strong>in</strong>g a communications tool.The consistency across the five <strong>case</strong> <strong>studies</strong> <strong>in</strong>dicates a great deal of awareness, appreciation, <strong>and</strong>action regard<strong>in</strong>g <strong>data</strong> <strong>and</strong> its <strong>collection</strong>. The common themes regard<strong>in</strong>g the protection <strong>and</strong> control ofCase Studies <strong>in</strong> Tribal Data Collection <strong>and</strong> Use<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association64


<strong>data</strong> <strong>and</strong> the perceived l<strong>in</strong>k between <strong>data</strong> <strong>and</strong> community well-be<strong>in</strong>g <strong>in</strong>dicates that a value base hasdeveloped among these communities that supports a high level of sophistication <strong>and</strong> focus on <strong>data</strong>.Policies regard<strong>in</strong>g <strong>data</strong>, <strong>in</strong>clud<strong>in</strong>g its <strong>collection</strong>, storage, ownership, <strong>use</strong>, <strong>and</strong> how it is shared, arelimited to specific situations <strong>and</strong> compliance with the HIPAA. Departmental or funder-specific policies<strong>and</strong>/or procedures are generally funder or situation-driven. Even though general written policies are notwell developed among the study sites, strong norms <strong>and</strong> protocols <strong>and</strong> practices that conform to thosenorms are consistent across all five sites studied.Data SystemsEvery one of the study sites had some form of automated <strong>data</strong> systems. Two sites had systems that theyhad developed, <strong>and</strong> a third was <strong>in</strong> the process of develop<strong>in</strong>g one themselves. Each expressedsatisfaction with their systems. All sites reported hav<strong>in</strong>g <strong>data</strong> systems provided by at least one funder,<strong>and</strong> some have several. Four out of five sites report multiple <strong>data</strong> systems across various departments.Three out of five report on multiple <strong>data</strong> systems for the same programs that requires redundant entry.Study sites also reported not be<strong>in</strong>g able to manipulate, analyze, or report <strong>data</strong> <strong>in</strong> systems that areprovided by funders, <strong>and</strong> two sites commented that they transfer <strong>data</strong> manually from outside systems to<strong>tribal</strong> systems for analysis or <strong>in</strong>ternal report<strong>in</strong>g purposes.The most common <strong>data</strong> systems record service utilization <strong>data</strong> by program, fund<strong>in</strong>g sources, ordepartment. Data elements/fields <strong>and</strong> entry procedures are primarily funder-driven <strong>in</strong> four sites. Onesite has <strong>in</strong>volved the community <strong>in</strong> the def<strong>in</strong>ition of <strong>data</strong> fields. This community works with an outsidecontractor who has provided technical assistance <strong>in</strong> the development of its system.Data Relationships, Accountability, <strong>and</strong> OwnershipDespite their diversity, the study sites share several common issues with regard to <strong>data</strong> relationships.Four of the five of the sites reported hav<strong>in</strong>g relationships with other jurisdictions or <strong>in</strong>stitutions that collect<strong>data</strong> about the <strong>tribal</strong> or urban American <strong>Indian</strong>/Alaska Native service population. One reported currentlyhav<strong>in</strong>g no such relationships. Each of the respondents reported that little or no mean<strong>in</strong>gful or usable<strong>data</strong> comes back to the programs once shared. One site reported that only s<strong>in</strong>ce the <strong>tribal</strong> programbegan to take the lead <strong>in</strong> shar<strong>in</strong>g <strong>data</strong> have outside agencies been forthcom<strong>in</strong>g with their <strong>data</strong>. Twosites reported several problems with outside agencies or <strong>in</strong>stitutions provid<strong>in</strong>g <strong>in</strong>accurate <strong>data</strong> about the<strong>tribal</strong> or urban American <strong>Indian</strong>/Alaska Native service population. This is most problematic when policyor fund<strong>in</strong>g decisions are made based on the undercounts.All five of the study sites reported a strong sense of ownership of their <strong>data</strong>. In two of the sites the senseof ownership is expressed primarily at the program level, <strong>and</strong> <strong>in</strong> the other three, it is primarily expressedat a community wide level. Each site is very guarded about allow<strong>in</strong>g outside researchers <strong>in</strong>to theCase Studies <strong>in</strong> Tribal Data Collection <strong>and</strong> Use<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association65


community due to negative past experiences. Each site has developed strong <strong>and</strong> expressed normsregard<strong>in</strong>g shar<strong>in</strong>g <strong>data</strong> outside the community. Most make decisions about shar<strong>in</strong>g <strong>data</strong> outside on a<strong>case</strong>-by-<strong>case</strong> basis, <strong>and</strong> three of the five reported hav<strong>in</strong>g a process for approv<strong>in</strong>g such a request. Onesite reported that the criteria for such decisions are <strong>in</strong>formal, but one aspect considered is whether avalue is returned to the community.All sites gave <strong>in</strong>dication that political relationships <strong>and</strong> <strong>data</strong> relationships are closely l<strong>in</strong>ked. Four of fivesites report negative experiences with outside <strong>data</strong> gatherers, less than reliable <strong>data</strong> about theircommunity be<strong>in</strong>g <strong>use</strong>d <strong>in</strong> policy decisions, or <strong>data</strong> be<strong>in</strong>g <strong>use</strong>d politically aga<strong>in</strong>st their programs. Twosites po<strong>in</strong>ted to the <strong>in</strong>accuracy of U.S. Census Bureau <strong>data</strong>.One site reported hav<strong>in</strong>g seen improvements <strong>in</strong> the <strong>data</strong> reported by ma<strong>in</strong>stream agencies as a result of<strong>tribal</strong>ly <strong>in</strong>itiated efforts to improve <strong>data</strong> relationships.Data As a ResourceAll five sites reported multiple <strong>use</strong>s of <strong>data</strong>. All sites <strong>use</strong> <strong>data</strong> for report<strong>in</strong>g service utilization <strong>data</strong> tofunders. All sites also reported <strong>use</strong> of <strong>data</strong> for grant proposals. All sites reported us<strong>in</strong>g <strong>data</strong> forguidance <strong>in</strong> program plann<strong>in</strong>g <strong>and</strong> sett<strong>in</strong>g program priorities. One tribe has recently conducted its own<strong>tribal</strong> census to secure <strong>data</strong> for plann<strong>in</strong>g <strong>and</strong> development purposes. Three sites reported us<strong>in</strong>g <strong>data</strong> toguide budget decisions or to support budget recommendations.Four of the five sites reported us<strong>in</strong>g <strong>data</strong> <strong>in</strong> community <strong>in</strong>formation <strong>and</strong> education activities. Two ofthese sites make <strong>use</strong> of program or <strong>tribal</strong> newsletters to share <strong>data</strong>. Two <strong>use</strong> <strong>data</strong> to create <strong>in</strong>ternalreports that are <strong>use</strong>d <strong>in</strong> community education, staff tra<strong>in</strong><strong>in</strong>g, or partner education. Two of the <strong>case</strong> studysites reported us<strong>in</strong>g <strong>data</strong> for conference presentations outside of their communities.Two communities said that <strong>data</strong> is <strong>use</strong>d <strong>in</strong> political <strong>and</strong> fund<strong>in</strong>g advocacy primarily <strong>in</strong> local jurisdictions.For example, <strong>data</strong> may be presented as part of testimony dur<strong>in</strong>g budget hear<strong>in</strong>gs or contractnegotiations.F<strong>in</strong>ally, three study sites reported us<strong>in</strong>g <strong>data</strong> <strong>in</strong> program evaluation. Two contract with outsideconsultants, <strong>and</strong> one has worked with a third party contractor evaluat<strong>in</strong>g federal grants. All three studysites have developed a value on evaluation <strong>and</strong> have engaged <strong>in</strong> evaluation activitiesLack of Data: Impact <strong>and</strong> BarriersProgrammatic <strong>and</strong> Budget ImpactsFour of the five <strong>case</strong> study sites mentioned a history of denied grants or lost fund<strong>in</strong>g that they attribute <strong>in</strong>part to a lack of available <strong>data</strong>. The urban community felt an immediate <strong>and</strong> press<strong>in</strong>g need for reliableCase Studies <strong>in</strong> Tribal Data Collection <strong>and</strong> Use<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association66


<strong>data</strong> <strong>in</strong> order to compete for fund<strong>in</strong>g <strong>in</strong> a diverse environment where competition for fund<strong>in</strong>g is high.Two <strong>tribal</strong> communities viewed the availability of <strong>data</strong> as a survival issue, <strong>in</strong> one <strong>case</strong> for <strong>in</strong>dividualchildren <strong>and</strong> families <strong>and</strong> the other for the operation of programs. Two communities po<strong>in</strong>ted to hav<strong>in</strong>g<strong>data</strong> <strong>in</strong> the form of <strong>in</strong>digenous knowledge <strong>and</strong> know<strong>in</strong>g their communities but acknowledged los<strong>in</strong>g outon fund<strong>in</strong>g beca<strong>use</strong> their knowledge was not <strong>in</strong> a form that meets the expectation of funders. Thesesites felt that culturally based <strong>in</strong>formation needs to be accepted along with hard numbers.Reliability <strong>and</strong> Credibility IssuesInaccuracy of exist<strong>in</strong>g <strong>data</strong> available from entities outside the study communities is seen as problematic.When the <strong>data</strong> outside is <strong>in</strong>accurate, for example, based on undercounts, service population needs areunderreported. As a result, needed services are hard to justify. Study sites report that they arefrequently <strong>in</strong> a position to have to <strong>use</strong> <strong>in</strong>accurate <strong>data</strong> <strong>in</strong> grant proposals. Some reject the unreliable<strong>data</strong> <strong>and</strong> <strong>use</strong> their own anecdotal knowledge, which is often rejected as not reliable.Three of five sites po<strong>in</strong>ted to problems with credible <strong>data</strong> <strong>collection</strong> by non-American <strong>Indian</strong>/AlaskaNative agencies <strong>and</strong> jurisdictions with the result be<strong>in</strong>g that important policy or fund<strong>in</strong>g decisions aremade on the basis of <strong>in</strong>accurate <strong>data</strong>. Primary among the problems cited was the failure of ma<strong>in</strong>streamagencies to identify <strong>and</strong> count American <strong>Indian</strong>/Alaska Native people.Another major barrier to hav<strong>in</strong>g effective <strong>and</strong> reliable <strong>data</strong> was the failure of funders to return accurate orreliable <strong>data</strong> to the community. One study site even reported that <strong>data</strong> they submit to funders comesback <strong>in</strong> reports that lump the American <strong>Indian</strong>/Alaska Native <strong>data</strong> <strong>in</strong>to “other,” thus render<strong>in</strong>g their <strong>data</strong><strong>collection</strong> efforts <strong>use</strong>less.As mentioned above, two communities reported hav<strong>in</strong>g culturally based <strong>in</strong>formation or narrative(storytell<strong>in</strong>g) approaches to <strong>data</strong> rejected by funders on the basis of it not be<strong>in</strong>g sufficiently credible.One site that had engaged <strong>in</strong> extensive <strong>use</strong> of <strong>data</strong> has had its <strong>data</strong> attacked by funders <strong>and</strong> compet<strong>in</strong>gorganizations as suspect. The <strong>in</strong>ference understood by the site was that an American <strong>Indian</strong>/AlaskaNative organization cannot manage <strong>data</strong> or be trusted to provide credible <strong>data</strong>. Most sites felt racial<strong>and</strong> cultural stereotypes negatively impacted their ability to have their <strong>data</strong> accepted as credible <strong>and</strong> tocompete with outside <strong>data</strong> however <strong>in</strong>accurate it was. Three sites reported exercis<strong>in</strong>g care <strong>and</strong> cautionto ensure <strong>in</strong>tegrity <strong>in</strong> their <strong>data</strong> systems <strong>and</strong> reports so as to make them credible <strong>and</strong> defensible aga<strong>in</strong>stprejudicial attack. Two sites <strong>use</strong> outside non-American <strong>Indian</strong>/Alaska Native contract providers <strong>in</strong> partto bolster credibility.Resource <strong>and</strong> Capacity IssuesFour of the five sites discussed resources as a barrier to hav<strong>in</strong>g adequate <strong>data</strong>. One community felt thatmany problems would be solved if they had the resources to have a network that could l<strong>in</strong>k all of theirCase Studies <strong>in</strong> Tribal Data Collection <strong>and</strong> Use<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association67


departments <strong>and</strong> programs <strong>in</strong> a comprehensive approach. One site felt that the more that they got <strong>in</strong>to<strong>data</strong>, the more they saw that could be done, but there are just not enough resources to do what needs tobe done. Four of the five sites reported build<strong>in</strong>g <strong>in</strong>ternal capacity for <strong>data</strong> <strong>collection</strong>, storage, <strong>and</strong> <strong>use</strong>.One site said that as capacity grew, many of the <strong>in</strong>ternal barriers were overcome by experience.Community education <strong>and</strong> buy-<strong>in</strong> were cited <strong>in</strong> two communities as important resources that support<strong>data</strong>.Practice/Methodology IssuesThree of five sites discussed practice <strong>and</strong> methodology issues as barriers to effective <strong>data</strong> <strong>collection</strong><strong>and</strong> <strong>use</strong>. One cited problems with fitt<strong>in</strong>g <strong>data</strong> <strong>collection</strong> <strong>in</strong>to the delivery of traditional services. Anotherreported hir<strong>in</strong>g its own consultant to analyze <strong>data</strong> to ensure that <strong>data</strong> <strong>in</strong>terpretations were culturallybased. The third site discussed problems with sample size, lack of availability of culturally appropriate<strong>in</strong>struments for evaluation, <strong>and</strong> difficulties with gett<strong>in</strong>g approval from an outside <strong>in</strong>stitutional review boardregard<strong>in</strong>g human subjects protections.Tra<strong>in</strong><strong>in</strong>g <strong>and</strong> Staff DevelopmentWhen asked about tra<strong>in</strong><strong>in</strong>g <strong>and</strong> staff development regard<strong>in</strong>g <strong>data</strong>, all five study sites <strong>in</strong>dicated thattra<strong>in</strong><strong>in</strong>g happens as needed, with focus on specific systems or departmental need. Three mentionedtra<strong>in</strong><strong>in</strong>g on HIPAA compliance as a specific circumstance where tra<strong>in</strong><strong>in</strong>g has been provided. Two studysites have provided tra<strong>in</strong><strong>in</strong>g that could be characterized as big picture beca<strong>use</strong> of an emphasis onaddress<strong>in</strong>g issues such as why <strong>data</strong> is important <strong>and</strong> what roles various staff play <strong>in</strong> accuracy, quality,<strong>and</strong> confidentiality. Four of five sites expressed a desire for a more organized approach <strong>and</strong> a higherlevel of tra<strong>in</strong><strong>in</strong>g or capacity with regard to <strong>data</strong>. Respondents generally wanted more skills related to theanalysis <strong>and</strong> report<strong>in</strong>g of <strong>data</strong>. Four of five sites also expressed a need for or appreciation of outsidetechnical assistance to support build<strong>in</strong>g a greater capacity for <strong>data</strong> <strong>collection</strong> <strong>and</strong> <strong>use</strong>. Respondentsfrom one community foc<strong>use</strong>d on the lack of resources for such tra<strong>in</strong><strong>in</strong>g as a major barrier todevelopment.Case Studies <strong>in</strong> Tribal Data Collection <strong>and</strong> Use<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association68


CHAPTER 9: CONCLUSIONS AND RECOMMENDATIONSConversations with the study participants reveal a substantial <strong>in</strong>terest, enthusiasm, <strong>and</strong> dedication oftime <strong>and</strong> resources related to <strong>data</strong>. Study sites with extensive development <strong>in</strong> the <strong>collection</strong> <strong>and</strong> <strong>use</strong> of<strong>data</strong> have achieved strong results. In addition, cultural history <strong>and</strong> tradition are <strong>use</strong>d, along with <strong>data</strong>, tomodify <strong>and</strong> plan programs for children.Issues Inaccurate <strong>and</strong> unreliable <strong>data</strong>: Data about American <strong>Indian</strong>/Alaska Native service populationsby outside jurisdictions or agencies is viewed as chronically <strong>in</strong>accurate or unreliable <strong>and</strong>presents a major difficulty to American <strong>Indian</strong>/Alaska Native communities seek<strong>in</strong>g to <strong>use</strong> <strong>data</strong> fordevelopment, plann<strong>in</strong>g, or advocacy purposes. Inaccurate <strong>and</strong> unreliable <strong>data</strong> is sometimes<strong>use</strong>d politically aga<strong>in</strong>st American <strong>Indian</strong>/Alaska Native programs, particularly when resourcesare scarce <strong>and</strong> the American <strong>Indian</strong>/Alaska Native service population is <strong>in</strong> a competitiveenvironment for resources. Efforts to control <strong>and</strong> <strong>use</strong> <strong>data</strong> <strong>in</strong> site communities are sometimeschallenged by ma<strong>in</strong>stream agencies, governments, or funders as unreliable due to reasons thatrange from racial stereotypes to sample size or methodology. Data produced <strong>in</strong> response to fund<strong>in</strong>g agencies: Data provided to funders by American<strong>Indian</strong>/Alaska Native programs <strong>in</strong> our study sites seldom, if ever, returns to the community <strong>in</strong> aform that can be <strong>use</strong>d effectively for development, plann<strong>in</strong>g, or advocacy purposes. The <strong>tribal</strong>communities <strong>and</strong> American <strong>Indian</strong>/Alaska Native organizations <strong>in</strong> the study sites work withmultiple <strong>data</strong> systems required by different funders. These programs reported hav<strong>in</strong>g to enter<strong>data</strong> numerous times <strong>and</strong> often <strong>in</strong> unnecessary amounts to satisfy the requirements of each <strong>data</strong>system. Beca<strong>use</strong> many of the systems are <strong>in</strong>compatible with each other, for a tribe to ensurefuture accessibility to their own <strong>data</strong>, they often have to keep their own record. This adds to themultiple times <strong>data</strong> is entered. Past negative experiences: Negative historical experiences with outside research <strong>and</strong> <strong>data</strong><strong>collection</strong> are universal <strong>and</strong> strongly shape current perceptions of <strong>and</strong> will<strong>in</strong>gness to participate<strong>in</strong> such projects.Case Studies <strong>in</strong> Tribal Data Collection <strong>and</strong> Use<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association69


Challenges: While strong norms have developed <strong>in</strong> the study sites, comprehensive policies,coord<strong>in</strong>ated <strong>data</strong> systems, <strong>and</strong> <strong>in</strong>tegrated tra<strong>in</strong><strong>in</strong>g approaches have not yet been developed.Communities that participated <strong>in</strong> the study are confront<strong>in</strong>g difficult <strong>data</strong>-related challenges <strong>in</strong>both dem<strong>and</strong><strong>in</strong>g <strong>and</strong> resource-poor environments. This set of circumstances seems to begenerat<strong>in</strong>g a variety of creative <strong>and</strong> sophisticated solutions. Efforts: Communities that have taken the lead <strong>in</strong> <strong>collection</strong>, control, <strong>and</strong> <strong>use</strong> of their own <strong>data</strong>have leveraged stronger <strong>and</strong> more fruitful <strong>data</strong> relationships with other jurisdictions. Data efforts<strong>in</strong> study sites are often driven by a strong leader, acute need, <strong>and</strong>/or funder expectations.RecommendationsThe recommendations from this study are aimed at a variety of key stakeholders. First, there is animportant role for both the foundation community <strong>and</strong> government to support capacity build<strong>in</strong>g effortsamong tribes <strong>and</strong> among non-American <strong>Indian</strong>/Alaska Native agencies gather<strong>in</strong>g <strong>and</strong> report<strong>in</strong>g <strong>data</strong>.Second, some recommendations are for the consideration of <strong>tribal</strong> <strong>and</strong> urban American <strong>Indian</strong>/AlaskaNative communities. F<strong>in</strong>ally, some recommendations are for the consideration of non-American<strong>Indian</strong>/Alaska Native <strong>data</strong> partners. Each stakeholder has an essential role <strong>in</strong> br<strong>in</strong>g<strong>in</strong>g about neededchange. Clearly, as several of the study sites demonstrate, when these issues are dealt with effectively,everyone w<strong>in</strong>s—particularly the families <strong>and</strong> children who need services <strong>and</strong> supports. Study sites havedemonstrated just how much is possible without specific fund<strong>in</strong>g. The follow<strong>in</strong>g recommendations areoffered for consideration.Recommendation One: Develop strategies to address the follow<strong>in</strong>g issues: Challenges of redundant <strong>data</strong> entry requirements Gett<strong>in</strong>g mean<strong>in</strong>gful <strong>data</strong> back to <strong>tribal</strong> communities from <strong>data</strong> partners <strong>and</strong>/or fund<strong>in</strong>gsources Negative <strong>use</strong> of <strong>data</strong> Improv<strong>in</strong>g <strong>data</strong> accuracy <strong>and</strong> reliability regard<strong>in</strong>g American <strong>Indian</strong>/Alaska Native servicepopulations reported by non-American <strong>Indian</strong>/Alaska Native agenciesRecommendation Two: Improve the quality, accuracy, <strong>and</strong> reliability of American <strong>Indian</strong>/Alaska Nativeservice population <strong>data</strong> reported by non-American <strong>Indian</strong>/Alaska Native jurisdictions <strong>and</strong> agencies bydo<strong>in</strong>g the follow<strong>in</strong>g: Support<strong>in</strong>g improved <strong>data</strong> relationships Promot<strong>in</strong>g policies that require active <strong>and</strong> affirmative identification, record<strong>in</strong>g, <strong>and</strong> report<strong>in</strong>gregard<strong>in</strong>g American <strong>Indian</strong>/Alaska Native service populationsCase Studies <strong>in</strong> Tribal Data Collection <strong>and</strong> Use<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association70


Recommendation Three: Advocate for <strong>and</strong> obta<strong>in</strong> support from foundation <strong>and</strong> government agencies toenhance the capacity of <strong>tribal</strong> <strong>and</strong> urban American <strong>Indian</strong>/Alaska Native communities to collect <strong>and</strong> <strong>use</strong><strong>data</strong> by: Develop<strong>in</strong>g peer-to-peer learn<strong>in</strong>g <strong>and</strong> dialogue opportunities around this emerg<strong>in</strong>g issue Develop<strong>in</strong>g <strong>and</strong> dissem<strong>in</strong>at<strong>in</strong>g “promis<strong>in</strong>g practices” <strong>in</strong> <strong>tribal</strong> <strong>data</strong> <strong>collection</strong> <strong>and</strong> <strong>use</strong> vialiterature <strong>and</strong> conferences Support<strong>in</strong>g the development of model comprehensive policies that address <strong>data</strong> <strong>collection</strong><strong>and</strong> <strong>use</strong> at the <strong>tribal</strong> level Support<strong>in</strong>g technical assistance <strong>and</strong> tra<strong>in</strong><strong>in</strong>g to <strong>tribal</strong> communities on <strong>tribal</strong> <strong>data</strong> <strong>collection</strong><strong>and</strong> <strong>use</strong>We are <strong>in</strong> an evolutionary state, <strong>in</strong> which sovereign <strong>tribal</strong> nations are <strong>in</strong>creas<strong>in</strong>gly tak<strong>in</strong>g control ofresearch agendas. Secur<strong>in</strong>g <strong>tribal</strong> approval, design<strong>in</strong>g research that also meets the needs of American<strong>Indian</strong>s/Alaska Natives <strong>and</strong> form<strong>in</strong>g partnerships with societies that emphasize non-l<strong>in</strong>ear philosophies<strong>and</strong> worldviews are challeng<strong>in</strong>g tasks that require time, patience, open m<strong>in</strong>ds, flexibility, <strong>and</strong> substantialresources. Research practices that serve the multiple purposes of improv<strong>in</strong>g the lives of American<strong>Indian</strong>/Alaska Native research capacities, contribut<strong>in</strong>g to science, <strong>and</strong> further<strong>in</strong>g the careers ofAmerican <strong>Indian</strong>/Alaska Native <strong>and</strong> non-Native scholars are becom<strong>in</strong>g realities.Even as the number of American <strong>Indian</strong>s/Alaska Natives with advanced degrees is <strong>in</strong>creas<strong>in</strong>g, American<strong>Indian</strong>/Alaska Native communities will cont<strong>in</strong>ue to depend on non-Native researchers for some researchneeds (Ambler 1997). In response, <strong>tribal</strong> councils are <strong>in</strong>creas<strong>in</strong>g their control over the research that isconducted on their <strong>tribal</strong> members by establish<strong>in</strong>g a formal review process for research requestsorig<strong>in</strong>at<strong>in</strong>g from both non-Natives <strong>and</strong> American <strong>Indian</strong>s/Alaska Natives (Swisher, 1993; Nason, 1996).These recommendations <strong>in</strong>clude:• Support<strong>in</strong>g the development of strategies to deal with the smooth flow of accurate <strong>data</strong>regard<strong>in</strong>g American <strong>Indian</strong>/Alaska Native populations.• Improv<strong>in</strong>g the quality, accuracy <strong>and</strong> reliability of American <strong>Indian</strong>/Alaska Native servicepopulation <strong>data</strong> by non-<strong>Indian</strong> jurisdictions <strong>and</strong> agencies.• Encourag<strong>in</strong>g support by foundation <strong>and</strong> government agencies for enhanc<strong>in</strong>g the capacity of<strong>tribal</strong> <strong>and</strong> urban American <strong>Indian</strong>/Alaska Native communities to collect <strong>and</strong> <strong>use</strong> <strong>data</strong>.• Participatory research is often most effective with this community, but often also the most timeconsum<strong>in</strong>g <strong>and</strong> costly approach.• Those that have unwritten, but clear protocols, might benefit by develop<strong>in</strong>g written policiesregard<strong>in</strong>g the procedure outsiders must follow for the <strong>collection</strong>, <strong>use</strong> of shar<strong>in</strong>g of <strong>data</strong>. Writtenpolicies are an <strong>in</strong>dication that the values expressed about <strong>data</strong> are be<strong>in</strong>g <strong>in</strong>stitutionalized.Case Studies <strong>in</strong> Tribal Data Collection <strong>and</strong> Use<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association71


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APPENDIX ARESEARCH TOPICS AND QUESTIONSI. Underly<strong>in</strong>g Values About Data Collection <strong>and</strong> Use:• Tell me about the <strong>use</strong> of <strong>data</strong> concern<strong>in</strong>g <strong>Indian</strong> children <strong>in</strong> your program, tribe, or agency.Where is it <strong>use</strong>d <strong>and</strong> how?• How does the program, <strong>tribal</strong> government, <strong>and</strong> community feel about <strong>data</strong>? What has thehistory of <strong>data</strong> <strong>collection</strong> <strong>and</strong> <strong>use</strong> been <strong>in</strong> this community (e.g., key events, responses)?• What policies are <strong>in</strong> place around the <strong>collection</strong>, <strong>use</strong>, or shar<strong>in</strong>g of <strong>data</strong>?• Which types of <strong>data</strong> regard<strong>in</strong>g children does your (tribe, agency) <strong>use</strong> <strong>in</strong> their work?II. Data SystemsPrompts <strong>National</strong>/Regional/State Statistics Community Profile Data (Reservation Demographics <strong>and</strong> Statistics) Program Services Data• How are <strong>data</strong> kept (i.e., <strong>collection</strong>s methods <strong>and</strong> storage)?• Who is responsible for keep<strong>in</strong>g the <strong>data</strong>?• Who owns the <strong>data</strong>?• How is <strong>in</strong>formation shared with those who need or request it?III. Data Relationships, Accountability, ity, <strong>and</strong> Ownership• What <strong>data</strong> are you aware of be<strong>in</strong>g kept about your children by other entities?• Which of those <strong>data</strong> sources does your tribe or agency provide the orig<strong>in</strong>al <strong>data</strong>?• What is done with the <strong>data</strong> collected by or reported to other entities?• Who owns the <strong>data</strong>?• Does the <strong>data</strong> come back to the (program, community, tribe, agency) <strong>in</strong> a usable fashion?Case Studies <strong>in</strong> Tribal Data Collection <strong>and</strong> Use<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association76


IV. Use of Data or Data as a Resource• Tell me about some situations when you experience <strong>data</strong> as a <strong>use</strong>ful resource.• How does <strong>data</strong> <strong>in</strong>fluence fund<strong>in</strong>g?Prompts Fund<strong>in</strong>g proposals <strong>and</strong> contract negotiations Budget decisions Advocacy <strong>and</strong> pubic awareness• In your experience, tell me how <strong>data</strong> <strong>in</strong>forms policy <strong>and</strong> practice.Prompts Program <strong>and</strong> service design decisions Program reports Evaluation <strong>and</strong> quality control Policy decisions <strong>and</strong> resource allocation• Assum<strong>in</strong>g I had permission, if I wanted to <strong>in</strong>fluence public policy with <strong>data</strong> about the children<strong>and</strong> families you serve, how would I get the <strong>data</strong>?Prompts Would the process require contact<strong>in</strong>g several people <strong>and</strong> programs? How well would the <strong>data</strong> describe your children’s needs?V. The Lack of Data <strong>and</strong> Barriers• Tell me about a time when you really felt you needed <strong>data</strong> but did not have it.• What are the barriers to hav<strong>in</strong>g the <strong>data</strong> you need?• What negative impact has your (tribe, program, agency, constituency) experienced from a lackof one or more of the types of <strong>data</strong> we discussed?VI. Tra<strong>in</strong><strong>in</strong>g <strong>and</strong> Staff Development• What tra<strong>in</strong><strong>in</strong>g does your staff receive about <strong>data</strong> <strong>collection</strong>, research, or us<strong>in</strong>g <strong>data</strong> as a tool orresource?• What are the barriers to provid<strong>in</strong>g quality tra<strong>in</strong><strong>in</strong>g to your staff?Document AnalysisAs part of this study NICWA would like to conduct a document analysis. Are there two or threedocuments that could be reviewed for <strong>data</strong> content.. Such documents might <strong>in</strong>clude fund<strong>in</strong>gapplications, legislative testimony, strategic plans, program or grant reports. No document or <strong>data</strong> willbe disclosed <strong>and</strong> all documents will be returned. The purpose is to do a content analysis regard<strong>in</strong>g how<strong>data</strong> is <strong>use</strong>d, presented, or needed or where reliable <strong>data</strong> is cited as lack<strong>in</strong>g.Case Studies <strong>in</strong> Tribal Data Collection <strong>and</strong> Use<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association77


CASE IREVISED MATRIXCASE IICASE IIICASE IVCASE VCase Study SiteGeographic FocusFeather RiverBehavioral HealthServicesMulti-TribeConsortiumPortl<strong>and</strong>, OregonUrban American<strong>Indian</strong>/Alaska NativeCommunityPassamaquoddyTribe <strong>Indian</strong>TownshipSt. Regis MohawkNationPoarch B<strong>and</strong> ofCreek <strong>Indian</strong>sUrban <strong>Indian</strong> Reservation Reservation ReservationInquiry ThemeQuestion FocusUnderly<strong>in</strong>g ValuesData SystemsRelationships,Accountability, <strong>and</strong>OwnershipData as a ResourceThe Lack of Data<strong>and</strong> BarriersTra<strong>in</strong><strong>in</strong>g <strong>and</strong> StaffDevelopmentCase Studies <strong>in</strong> Tribal Data Collection <strong>and</strong> Use<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association78


APPENDIX BMATRIX OF CROSS-SITE FINDINGSThe follow<strong>in</strong>g matrix of f<strong>in</strong>d<strong>in</strong>gs summarizes the ma<strong>in</strong> f<strong>in</strong>d<strong>in</strong>gs from each <strong>case</strong> study <strong>in</strong> a table format.The ma<strong>in</strong> topics depicted <strong>in</strong> Appendix B are geographic/jurisdiction, underly<strong>in</strong>g values; guid<strong>in</strong>g policies;<strong>data</strong> systems; relationships, accountability <strong>and</strong> ownership; <strong>use</strong> of <strong>data</strong> <strong>and</strong> <strong>data</strong> as a resource; the lackof <strong>data</strong>, impact <strong>and</strong> barriers; <strong>and</strong> tra<strong>in</strong><strong>in</strong>g <strong>and</strong> staff development; <strong>and</strong>. Information depicted <strong>in</strong> Table 3provides a summarized graphic of details provided dur<strong>in</strong>g the <strong>case</strong> study <strong>in</strong>terview process <strong>and</strong>discussed throughout this report.Case Studies <strong>in</strong> Tribal Data Collection <strong>and</strong> Use<strong>National</strong> <strong>Indian</strong> <strong>Child</strong> Welfare Association79


Table 3. Matrix of F<strong>in</strong>d<strong>in</strong>gsCASE I CASE II CASE III CASE IV CASE VCase Study SiteFeather River BehavioralHealth ServicesPortl<strong>and</strong>, Oregon UrbanAmerican <strong>Indian</strong>/AlaskaNative CommunityPassamaquoddy Tribe<strong>Indian</strong> TownshipSt. Regis Mohawk Nation Poarch B<strong>and</strong> of Creek<strong>Indian</strong>sGeographic/Jurisdictionion Multi-tribe Consortium Urban community Reservation Reservation ReservationUnderly<strong>in</strong>g ValuesExpressed value <strong>and</strong>priority on <strong>data</strong>Survival issueSense of pride <strong>in</strong> <strong>data</strong><strong>collection</strong>Active self-directed<strong>collection</strong>Vision for the role of <strong>data</strong>Strongly protective butvalue help<strong>in</strong>g others via<strong>data</strong>Value control of own <strong>data</strong>Multiple <strong>use</strong>s for <strong>data</strong>View <strong>data</strong> as <strong>in</strong>form<strong>in</strong>gdecision mak<strong>in</strong>gView <strong>data</strong> as excit<strong>in</strong>gHigh value on confidentialityValue outside evaluatorExpressed value <strong>and</strong>appreciation for <strong>data</strong>Active self-directed<strong>collection</strong>Vision for the role of <strong>data</strong>Strongly protectivePrioritize control of own <strong>data</strong>Multiple <strong>use</strong>s for <strong>data</strong>View <strong>data</strong> as <strong>in</strong>form<strong>in</strong>gdecision mak<strong>in</strong>gView <strong>data</strong> as a competitiveadvantageExpressed value for <strong>data</strong>High value on confidentialityActive self-directed<strong>collection</strong>View <strong>data</strong> as acommunication toolView <strong>data</strong> as <strong>in</strong>form<strong>in</strong>gdecision mak<strong>in</strong>gStrongly protectiveMultiple <strong>use</strong>s for <strong>data</strong>Rely on own <strong>data</strong> foraccuracyHigh value on confidentiality Prioritize control of own <strong>data</strong>Frustration with accuracy ofavailable <strong>data</strong>Appreciate need foraccurate <strong>data</strong>Active report<strong>in</strong>g of <strong>data</strong>Value know<strong>in</strong>g thecommunity above numbers.Prioritize control of own <strong>data</strong>Expressed valueSurvival issueActive self-directed<strong>collection</strong>Self-<strong>in</strong>itiated censusStrongly protectiveMultiple <strong>use</strong>s for <strong>data</strong>High value on confidentialityPrioritize control of own <strong>data</strong>


CASE I CASE II CASE III CASE IV CASE VCase Study SiteFeather River BehavioralHealth ServicesPortl<strong>and</strong>, Oregon UrbanAmerican <strong>Indian</strong>/AlaskaNative CommunityPassamaquoddy Tribe<strong>Indian</strong> TownshipSt. Regis Mohawk Nation Poarch B<strong>and</strong> of Creek<strong>Indian</strong>sGuid<strong>in</strong>g PoliciesData SystemsNone currentlyStrong normsAutomated, self-designedsystemMultiple funder-driven <strong>data</strong>systems requir<strong>in</strong>g multipleentriesCommunity-driven <strong>data</strong>fieldsOutside evaluator <strong>and</strong>support<strong>in</strong>g <strong>data</strong> systemNo written policy regard<strong>in</strong>gownership of <strong>data</strong>Strong protocol for approvalof outside <strong>data</strong> requestsGrant requirementsMultiple <strong>data</strong> systems (state<strong>and</strong> program) requir<strong>in</strong>gmultiple entryAutomatedFunder-driven <strong>data</strong> fields,policies, <strong>and</strong> protocolsDepartmental policies <strong>and</strong>proceduresProtocol for transfer of <strong>data</strong>with contractorGrant requirementsHealth Insurance Portability<strong>and</strong> Accountability Act(HIPAA) compliance <strong>and</strong>confidentialityAutomatedService utilization bydepartmentFunder-driven <strong>data</strong> fieldsDepartmental policies <strong>and</strong>proceduresGrant requirementsLeader def<strong>in</strong>ed normsNo written policyStrong protocol for approvalof outside <strong>data</strong> requestsMultiple <strong>data</strong> systems (state<strong>and</strong> <strong>tribal</strong>) requir<strong>in</strong>g multipleentriesAutomatedTransfers state <strong>data</strong> to <strong>tribal</strong>systems for manipulation<strong>and</strong> report<strong>in</strong>gFunder-driven <strong>data</strong> fieldsDepartmental policies <strong>and</strong>proceduresOutside requests screenedbefore <strong>tribal</strong> councilAutomatedSatisfied with softwareapplicationsMultiple <strong>data</strong> systems forvarious programsService utilization bydepartmentFunder-driven <strong>data</strong> fields


CASE I CASE II CASE III CASE IV CASE VCase Study SiteFeather River BehavioralHealth ServicesPortl<strong>and</strong>, Oregon UrbanAmerican <strong>Indian</strong>/AlaskaNative CommunityPassamaquoddy Tribe<strong>Indian</strong> TownshipSt. Regis Mohawk Nation Poarch B<strong>and</strong> of Creek<strong>Indian</strong>sRelationships,Accountability, <strong>and</strong>OwnershipLittle reported <strong>data</strong> returnsto programs <strong>in</strong> a <strong>use</strong>fulform, depend<strong>in</strong>g on thepartnerStrong sense of ownershipof <strong>data</strong>Strong norms regard<strong>in</strong>gshar<strong>in</strong>g <strong>data</strong> outsideDecisions made on <strong>case</strong>by-<strong>case</strong>basisImproved <strong>data</strong> relationshipsby provid<strong>in</strong>g reliable <strong>data</strong> topartnersReliability of <strong>data</strong> collectedby others is lack<strong>in</strong>g (e.g.,U.S. Census Bureau, localagencies)Little reported <strong>data</strong> returnsLittle reported <strong>data</strong>to programs <strong>in</strong> a <strong>use</strong>ful form- it is often <strong>in</strong>accurate returns to the tribe <strong>in</strong> a<strong>use</strong>ful formStrong sense of ownershipof <strong>data</strong>Strong norms regard<strong>in</strong>gshar<strong>in</strong>g <strong>data</strong> outside,<strong>in</strong>clud<strong>in</strong>g approval processNegative history of <strong>data</strong><strong>use</strong>d as a political toolaga<strong>in</strong>st American<strong>Indian</strong>/Alaska NativeprogramsPolitical relationships affect<strong>data</strong> relationshipsStrong sense of ownershipof <strong>data</strong>Strong norms regard<strong>in</strong>gshar<strong>in</strong>g <strong>data</strong> outside,<strong>in</strong>clud<strong>in</strong>g approval processNegative history withoutside researchers <strong>and</strong>mis<strong>use</strong> of <strong>data</strong>Little reported <strong>data</strong> returnsto the tribe <strong>in</strong> a <strong>use</strong>ful formStrong sense of ownershipof <strong>data</strong>Reliability of <strong>data</strong> collectedby others is lack<strong>in</strong>g (e.g.,U.S. Census Bureau)Data shared on the basis ofits value to the peopleA history of mis<strong>use</strong>d <strong>and</strong>un<strong>use</strong>d <strong>data</strong> affects trust<strong>in</strong>gothers with <strong>tribal</strong> <strong>data</strong>.No current relationshipswith others who collect <strong>data</strong>No reported <strong>data</strong> returns tothe tribe <strong>in</strong> a <strong>use</strong>ful formEach department owns itsown <strong>data</strong>Guarded about outsideresearch


Case Study SiteUse of Data <strong>and</strong> Dataas a ResourceTra<strong>in</strong><strong>in</strong>g <strong>and</strong> StaffDevelopmentCASE I CASE II CASE III CASE IV CASE VFeather River BehavioralHealth ServicesMultiple <strong>use</strong>s of <strong>data</strong>Community <strong>in</strong>formation <strong>and</strong>educationService plann<strong>in</strong>g <strong>and</strong>sett<strong>in</strong>g prioritiesStaff <strong>and</strong> partner tra<strong>in</strong><strong>in</strong>gReport<strong>in</strong>gAdvocacyGrant proposalsEvaluationsConferencesAd hocHIPAA complianceConfidentialityBig picture, “why” tra<strong>in</strong><strong>in</strong>gprovidedExpressed need for higherlevel of tra<strong>in</strong><strong>in</strong>gExpressed appreciation foroutside contractor(technical assistance)Portl<strong>and</strong>, Oregon UrbanAmerican <strong>Indian</strong>/AlaskaNative CommunityMultiple <strong>use</strong>s of <strong>data</strong>Internal <strong>and</strong> externalreport<strong>in</strong>gCommunity <strong>in</strong>formation <strong>and</strong>educationBudget<strong>in</strong>gService plann<strong>in</strong>g <strong>and</strong>sett<strong>in</strong>g prioritiesAdvocacyGrant proposalsEvaluationAd hoc (related to specificsystems)HIPAA complianceExpressed need for higherlevel of tra<strong>in</strong><strong>in</strong>gLack of resources to applyto tra<strong>in</strong><strong>in</strong>gExpressed need fortechnical assistancePassamaquoddy Tribe<strong>Indian</strong> TownshipMultiple <strong>use</strong>s of <strong>data</strong>Internal <strong>and</strong> externalreport<strong>in</strong>gCommunity educationConference presentationsBudget<strong>in</strong>gService plann<strong>in</strong>g & sett<strong>in</strong>gprioritiesStaff tra<strong>in</strong><strong>in</strong>gGrant proposalsSt. Regis Mohawk NationMultiple <strong>use</strong>s of <strong>data</strong>Internal <strong>and</strong> externalreport<strong>in</strong>gCommunity <strong>in</strong>formationGrant proposalsBudget<strong>in</strong>g decisions <strong>and</strong>sett<strong>in</strong>g prioritiesEvaluationAd hoc, department levelAd hoc, provided by thespecific to <strong>data</strong> entrystate on current <strong>data</strong>Big picture tra<strong>in</strong><strong>in</strong>g systemsregard<strong>in</strong>g the importance ofaccuracy <strong>and</strong> role of <strong>data</strong>Department-by-departmentspecific to entryExpressed need for outsidecontractor (technicalassistance)Expressed need for higherlevel on tra<strong>in</strong><strong>in</strong>gPoarch B<strong>and</strong> of Creek<strong>Indian</strong>sMultiple <strong>use</strong>s of <strong>data</strong>Development/grantsPlann<strong>in</strong>g <strong>and</strong> prioritiesReport<strong>in</strong>gConducted <strong>tribal</strong> censusAd hocHIPAA complianceExpressed need for higherlevel on tra<strong>in</strong><strong>in</strong>gExpressed need fortechnical assistance


Case Study SiteThe Lack of Data:Impact <strong>and</strong> BarriersCASE I CASE II CASE III CASE IV CASE VFeather River BehavioralHealth ServicesMa<strong>in</strong>stream agencies notidentify<strong>in</strong>g or collect<strong>in</strong>g<strong>data</strong>, <strong>and</strong> not provid<strong>in</strong>g<strong>data</strong> back to the tribeHistory of lost grants due tolack of <strong>data</strong>Historically poor <strong>data</strong>relationships improv<strong>in</strong>gCulturally-based <strong>in</strong>formationneeds to be accepted ascredibleData capacity <strong>and</strong> <strong>in</strong>ternalcoord<strong>in</strong>ation challengesSample sizes <strong>and</strong>methodology challengesLack of culturallyappropriate <strong>in</strong>strumentsPortl<strong>and</strong>, Oregon UrbanAmerican <strong>Indian</strong>/AlaskaNative CommunityPrejudice <strong>and</strong> stereotyp<strong>in</strong>gresult<strong>in</strong>g <strong>in</strong> attacks on <strong>data</strong>credibilityData works aga<strong>in</strong>stadvocacy when numbersare small or <strong>in</strong>accurate.Compet<strong>in</strong>g needs of diverseurban environmentUndercount<strong>in</strong>g, i.e., failureof ma<strong>in</strong>stream providers toidentify “American<strong>Indian</strong>/Alaska Native”Lack of resources to devoteto <strong>data</strong>Accuracy of exist<strong>in</strong>g <strong>data</strong> isa h<strong>in</strong>drancePassamaquoddy Tribe<strong>Indian</strong> TownshipBarriers to <strong>in</strong>ternal <strong>data</strong><strong>collection</strong> have beenovercome with experienceBarriers exist with outside<strong>data</strong> partners not provid<strong>in</strong>gmean<strong>in</strong>gful <strong>data</strong> back to thetribeThe tribe has decided tohire its own evaluator for<strong>data</strong> analysis <strong>and</strong><strong>in</strong>terpretation.St. Regis Mohawk Nation Poarch B<strong>and</strong> of Creek<strong>Indian</strong>sAvailable <strong>data</strong> has been<strong>in</strong>accurate (i.e., reservationcross<strong>in</strong>g the UnitedStates/Canadian border)Data does not tell the realstory, thus can be mis<strong>use</strong>dNumbers needed are notavailable, so services arehard to justifyDifficulty fitt<strong>in</strong>g <strong>data</strong><strong>collection</strong> with traditionalservicesCulturally based <strong>in</strong>formationneeds to be accepted ascredible.Some grant applicationshave been unsuccessfulInaccurate or unreliable<strong>data</strong> risks the tribe’scredibilityLack of commonnetwork/software <strong>in</strong>hibitscomprehensive approachInstitutional review boardprocess is onerousLack of sufficient resourcesfor <strong>data</strong>


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