IT TAKES A COMMUNITY. Framework for the First Nations and Inuit Fetal Alcohol Syndrome and Fetal Alcohol Effects Initiative

Transcription

1 IT TAKES A COMMUNITY Framework for the Firt Nation and Inuit Fetal Alcohol Syndrome and Fetal Alcohol Effect Initiative A Reource Manual for Community-baed Prevention of Fetal Alcohol Syndrome and Fetal Alcohol Effect

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3 Framework for the Firt Nation and Inuit Fetal Alcohol Syndrome/ Fetal Alcohol Effect Initiative Prepared by the FAS/FAE Technical Working Group (accountable to the CPNP/FAS/E (FNIC) National Steering Committee, repreenting the Aembly of Firt Nation, the Inuit Tapiriat of Canada, and the Firt Nation and Inuit Health Branch) Prepared with the aitance of Clay McLeod, LL.B., B.Ed., Continuum: Advocacy and Educational Fieldwork

4 Our miion i to help the people of Canada maintain and improve their health. Health Canada Publihed by authority of the Miniter of Health For additional copie, pleae contact: Firt Nation and Inuit Health Branch Health Canada Potal Locator 1920A Ottawa, Ontario K1A 0L3 Tel: (613) Fax: (613) Également diponible en françai ou le titre Ça prend une communauté Thi publication can be made available in/on computer dikette/ large print/audio-caette/braille upon requet. Miniter of Public Work and Government Service, 1997 Cat. H34-84/1997E ISBN: Reprint 1997, 2001

5 Table of Content 1 PREFACE INTRODUCTION FAS/FAE Firt Nation and Inuit Hitorical Background Cultural Context The Firt Nation and Inuit FAS/FAE Initiative Community Feedback PURPOSE OF THIS FRAMEWORK GUIDING PRINCIPLES OF THE INITIATIVE Strengthening and Supporting Familie and Communitie Wholitically Family-Centred Prevention Community-Baed and Culturally Appropriate A Coordinated Approach through Collaborative Partnerhip Contributing to Capacity Building Univeral and Equitable Acce Accountability VISION, GOALS AND OBJECTIVES OF THE INITIATIVE Viion Goal Objective Objective #1 Raiing Awarene Objective #2 Reaching Thoe At Rik Objective #3 Working with Thoe Affected Objective #4 Creating Linkage Global Initiative Evaluation It Take a Community i

6 6 INITIATIVE COMPONENTS Target Group Operational Definition of Initiative Component Health Promotion and Awarene Education and Training Identification of Diagnotic Tool and Intervention Support Initiative Management Factor Linkage Coordination Reearch Initiative Management Initiative Evaluation INITIATIVE ELIGIBILITY AND FUNDING Eligible Project Sponor Firt Nation and Inuit FAS/FAE Initiative Budget National Coordination and Support Special Project Fund (National Steering Committee) Community-Baed Project Initiative Funding INITIATIVE IMPLEMENTATION Community Level Regional Level National Level Communication APPENDIX A: WHAT ARE FAS/FAE? APPENDIX B: REFERENCES APPENDIX C: GLOSSARY OF TERMS APPENDIX D: TERMS OF REFERENCE OF THE FAS/E TECHNICAL WORKING GROUP APPENDIX E: EXECUTIVE SUMMARY OF INITIATIVE FRAMEWORK ii It Take a Community

7 Preface CHAPTER 1 FAS/FAE i a nation-wide health concern, and it doe not dicriminate on the bai of race, ocioeconomic tatu, or ex. Becaue of lack of recognition and diagnoi, it i difficult to be certain of how many individual have FAS/FAE. About one baby out of 500 to 3000 annual live birth will have FAS; thi i called the incidence of FAS (how often a problem occur annually). The incidence of FAS i greater than the incidence of either Down Syndrome or Spina Bifida. The incidence of FAE i 5 to 10 time higher than the incidence of FAS (BC FAS Reource Society, 1998, p. 14 & Alberta Medical Aociation, 1999, citing A.P. Streiguth & D.M. Burge, FAS and FAE: Principle for Educator Phi Delta Kappa 1992; 17: ). Thi mean that, each year in Canada, omewhere between FAS babie are born, and around 1000 FAE babie are born (baed on 370,000 birth per year). Prevalence mean the number of people in a population that have a problem at a pecific point in time. The prevalence of FAS/FAE in high-rik population, including Firt Nation and Inuit communitie, may be a high a 1 in 5 (BC FAS Reource Society, 1998, p. 14). A a reult of their organic brain difference, individual with FAS/FAE, their familie, and their communitie experience a number of challenge and difficultie. Alo, a a reult of widepread myth about FAS/FAE, many people lack undertanding of thee difficultie. The extra lifetime cot to ociety aociated with an FAS/FAE individual have been etimated at US$1.4 million (Streiguth, 1991). Although thi figure i dated and taken from the American context, it i the only uch etimate that ha been made. It i beyond quetion that FAS/FAE affected individual require extraordinary health care, ocial ervice, correction, and educational ervice that repreent ignificant monetary cot to ociety (BC FAS Reource Society, 1998, p. 14). The economic and ocial cot aociated with FAS/FAE are ignificant, impacting Canadian ociety a a whole. The rate of FAS/FAE in ome Firt Nation and Inuit communitie are much higher than the national average. Moreover, FAS/FAE exit in the context of the hitory of colonization and devaluation endured by Firt Nation and Inuit, which ha reulted in a lo of culture. Therefore, the iue of FAS/FAE i a eriou concern to Firt Nation and Inuit communitie. In the pat, becaue of a lack of awarene of FAS/FAE, people have tended to focu on the negative apect of FAS/FAE. Individual affected by FAS/FAE have been iolated from their familie and communitie, and the communitie men, pregnant women, and mother have been impacted by hame, guilt, and grief. It Take a Community 1

8 Strategie are emerging, and awarene of way to addre FAS/FAE iue through prevention, identification, and intervention effort. With upport and intervention, FAS/FAE affected individual can lead productive live. Mot importantly, people are beginning to realize that FAS/FAE are community iue that need to be addreed on an individual, family, and community level, utilizing partnerhip at the regional and national level. 2 Preface

9 Introduction CHAPTER 2 FAS/FAE Regional difference exit in the claification, decription, and diagnoi of condition ariing from prenatal expoure to alcohol. Thee condition include Fetal Alcohol Syndrome (FAS), Fetal Alcohol Effect (FAE), partial Fetal Alcohol Syndrome (partial FAS), Alcohol-Related Neurodevelopmental Diorder (ARND), and Alcohol-Related Birth Defect (ARBD). There i not yet an agreed upon global term that encompae FAS, partial FAS, ARND, and ARBD (BC FAS Reource Society, 1998, p. 11). Throughout thi framework, for implicity and conitency, the traditional (although omewhat dated) and familiar terminology FAS/FAE will be ued to encompa all of thee condition. FAS/FAE are medical condition that mut be diagnoed by a phyician (Special Program Branch, 1996). Amongt other thing, FAS/FAE individual experience neurodevelopmental diorder a a reult of prenatal alcohol expoure. In other word, FAS/FAE are birth defect, reulting from a pregnant mother conumption of alcohol during her pregnancy. Through education, awarene, upport, and healing, FAS/FAE can be prevented. Children living with FAS (1) have a low birth weight and a low growth rate, (2) have abnormal facial feature and ear, and (3) often experience learning and behaviour problem, uch a hyperactivity, poor judgment, and anti-ocial behaviour. Children living with FAE have ome, but not all of the characteritic decribed above. FAE children do not have a milder cae of FAS, and they can uffer debilitating learning and behaviour problem a evere a thoe experienced by FAS children. FAS/FAE are leading caue of developmental delay in children. Individual affected by FAS/FAE often experience econdary diabilitie uch a mental health problem, dirupted chool experience, involvement with crime, ubtance abue, dependant living, and employment difficultie. Appendix A decribe the diagnotic criteria for FAS/FAE and ome of the difficultie experienced by FAS/FAE individual. FIRST NATIONS AND INUIT HISTORICAL BACKGROUND Firt Nation and Inuit in Canada find themelve living in Fourth World condition. Thi mean that many of them experience Third World ocioeconomic condition within the boundarie of a wealthy, indutrialized, Firt World nation (Royal Commiion on Aboriginal People, 1996, vol. 3, pp. 1 & ). It Take a Community 3

10 The colonial hitory of contact between European ettler and Aboriginal people ha led to the devaluation and ilencing of Firt Nation and Inuit culture (Royal Commiion on Aboriginal People, 1996, vol. 1 & Berger, 1991). Policie ranging from the forced removal of Firt Nation and Inuit children from their home to be raied in reidential chool to the creation of reerve and the forced relocation of Inuit communitie, and law ranging from the prohibition of the potlatch to blatantly dicriminatory voting law, illutrate the dehumanization and objectification of Firt Nation and Inuit. Having been tripped of political agency on the nation level becaue of colonial attitude of dominance and paternalim, Firt Nation and Inuit, familie, and communitie find themelve with decreaed level of elf-ufficiency (Muell et al., 1991, p ). For intance, a a reult of their upbringing in reidential chool, generation of Firt Nation and Inuit have been unable to develop traditional knowledge and kill, including baic parenting kill. In the face of enduring thee hardhip and cultural diruption, addiction, and ubtance abue have become prevalent in Aboriginal communitie (Royal Commiion on Aboriginal People, 1996, vol. 3, pp ). Furthermore, an intergenerational cycle of phyical, pychological, exual abue, and lo of piritual practice ha prung from thi hitory of devaluation and control, providing fertile oil for addiction, alcoholim, and ubtance abue. A one woman appearing before the Royal Commiion on Aboriginal People put it, the abence of elf-government created a climate in which alcoholim and violence were allowed to flourih. (Royal Commiion on Aboriginal People, 1992, p. 19). CULTURAL CONTEXT The Wetern European concept of health tend to focu on dieae and illne. In contrat to thi focu, Firt Nation and Inuit conception of health focu on wellne (Muell et al., 1991, p. 73). Furthermore, wellne i undertood in a wholitic fahion, taking all of the determinant of health into account. In Firt Nation culture, from traditional time to preent time, health [ha meant] balance and harmony within and among each of the four apect of human nature: phyical, mental, emotional, and piritual. (Muell et al., 1991, p. 19). In contrat to the Wetern European focu on individualim, Firt Nation and Inuit culture alo tre the importance of collective approache to iue, approache that integrate the individual with hi or her community and family (Muell et al., 1991, p. 88). Furthermore, a key notion in Firt Nation and Inuit conception of wholitic health i that of healing. Conitent with the Firt Nation and Inuit focu on wellne, healing i an integrative and dynamic concept that promote the attainment of balance and harmony (Stevenon, 1997, pp. 6 7). To remain true to thee tradition, Firt Nation and Inuit communitie impacted by FAS/FAE need to addre FAS/FAE iue a individual, familie, and entire communitie, triving for wholitic health and healing for all member of the community. THE FIRST NATIONS AND INUIT FAS/FAE INITIATIVE The 1999 Federal Budget included an allocation of fund aimed at expanding the exiting Canada Prenatal Nutrition Program (CPNP). Additional funding wa earmarked for initiative pecifically addreing FAS/FAE iue. The Firt Nation and Inuit FAS/FAE Initiative will be delivered through the 4 Introduction

11 Firt Nation and Inuit Health Branch (FNIHB) and the Population and Public Health Branch (PPHB). The funding breakdown i a follow: FNIHB PPHB 1999/2000 $ 750,000 $1,250, /2001 $1,350,000 $2,650,000 Annually (Ongoing) $1,700,000 $3,300,000 Total $3,800,000 + $7,200,000 = $11 Million FNIHB i reponible for delivering Firt Nation and Inuit Component (FNIC) program to Firt Nation (on-reerve) and Inuit communitie in Canada. Thi mean that $3.8 million will be available over the initial three year, and tarting in 2001/2002, $1.7 million in funding will be available every year to upport a new initiative addreing FAS/FAE iue impacting on-reerve Firt Nation and Inuit acro Canada. Throughout thi framework, the Firt Nation and Inuit FAS/FAE Initiative will be referred to a the Initiative. COMMUNITY FEEDBACK Between January 20, 2000 February 23, 2000, regional information-haring and feedback dicuion eion were held in Firt Nation and Inuit communitie acro Canada. Thee eion were deigned to collect feedback and input from Firt Nation and Inuit communitie about FAS/FAE iue, ranging from a decription of the impact that FAS/FAE have in communitie to an identification of the need of communitie in relation to FAS/FAE. Feedback indicated that FAS/FAE have a ignificant impact on Firt Nation and Inuit communitie; for intance, in the Northwet Territorie, FAS/FAE were decribed a a northern epidemic. Seion participant decribed many of the econdary diabilitie aociated with FAS/FAE, ranging from chool abenteeim to involvement with the correction ytem, and many participant hared painful peronal experience and torie. Seion participant alo treed the need to view FAS/FAE iue in hitorical context, a part of the legacy of colonialim and devaluation experienced by Firt Nation and Inuit in Canada. Seion participant alo treed the need to addre FAS/FAE iue wholitically, taking all of the determinant of health into account and working toward olution a whole familie and communitie. Seion participant identified particular related iue that cannot be ignored when addreing FAS/FAE iue; example of related iue decribed by participant include dicrimination, poverty, dometic violence, olvent and drug abue, and reidential chool yndrome. Seion participant attempted to identify the need of their communitie a they trive to addre FAS/FAE iue. In many eion, thi tak proved difficult becaue of a lack of awarene in relation to FAS/FAE generally, a well a a lack of information about exiting program and reource. Seion participant alo expreed frutration at the magnitude of the problem and the carcity of funding. Participant treed that olution to FAS/FAE iue cannot be baed on band aid approache and need to be adequately funded to allow for graroot work to proceed at the community level. It Take a Community 5

12 Particular need identified by eion participant include raied general awarene about FAS/FAE (including education in chool), upport for FAS/FAE affected individual, familie, and communitie, training for peron working with FAS/FAE affected individual, training for ocial and health ervice profeional and community worker, information about exiting reource, early identification and diagnoi of FAS/FAE affected children, ubtance-abue treatment program, and opportunitie for networking and community healing. Mot of thee need were echoed and reiterated in everal region, and ome (e.g., raiing awarene) were univerally acknowledged a prioritie for community action. 6 Introduction

13 Purpoe of thi Framework CHAPTER 3 The purpoe of thi framework i to guide the development, implementation, and evaluation of the Initiative, which will provide a tructure and identify Initiative component relative to the need of Firt Nation and Inuit communitie. Thi framework i baed on the value, principle, objective, and need identified by Firt Nation and Inuit communitie acro Canada during the information-haring and feedback dicuion proce decribed on page 5. It Take a Community 7

14 Guiding Principle of the Initiative CHAPTER 4 STRENGTHENING AND SUPPORTING FAMILIES AND COMMUNITIES WHOLISTICALLY Parent are primarily reponible for taking care of and guiding the development of their children. Since it take a community to raie a child, (Van Bibber, 1997) the extended family and community a a whole hare reponibility with and upport the parent in carrying out their reponibilitie. Example of community upport of parent in carrying out their reponibilitie include helping parent deal with behavioural challenge, teaching parent coping kill, providing repite care, and facilitating parent acce to helpful information. Thi approach i conitent with Firt Nation and Inuit concept of approaching iue wholitically, a familie and communitie. FAMILY-CENTRED PREVENTION Mother, father, children, and the extended family will be the primary conideration in planning, developing, carrying out, and evaluating project, ervice, and activitie undertaken a part of the Initiative. COMMUNITY-BASED AND CULTURALLY APPROPRIATE Deciion making and action mut be related to the need and in accordance with the goal and apiration of each individual community and at a pace determined by that community. Initiative participant mut have and need to take an active role in planning, deigning, carrying out, operating, and evaluating individual project, ervice, and activitie undertaken a part of the Initiative. Expectation and requirement for project, ervice, and activitie undertaken a part of the Initiative hould be flexible, allowing individual communitie to fahion and tailor local Initiative component to their divere need and circumtance. Furthermore, Initiative component mut meet the ocial, cultural, and language need of the target group in the communitie in which they are to be carried out. Thi mean that tool and reource material mut be culturally enitive, uer-friendly, eaily undertood, and tranlated into Firt Nation and Inuit language when appropriate. 8 Guiding Principle of the Initiative

15 A COORDINATED APPROACH THROUGH COLLABORATIVE PARTNERSHIPS Communitie and organization operating and carrying out project, ervice, and activitie undertaken a part of the Initiative hould coordinate their effort with thoe of government (where appropriate) and other organization operating and carrying out imilar project. Thi will help to avoid overlap and duplication and to encourage the haring of expertie, information, and reource (mutual aid). The creation and maintenance of partnerhip and liaion hould alo be encouraged, becaue uch linkage will facilitate networking and communication vital to the effective and efficient implementation of project and activitie and delivery of ervice. Thi type of collaboration (working together) may alo enable communitie and organization to tretch their funding and maximize outcome by integrating program, initiative, or activitie (e.g., joint conference) when poible. Communitie and organization need active financial and technological upport if uch collaboration effort are to ucceed. CONTRIBUTING TO CAPACITY BUILDING Capacity building mean increaing the peronal and collective knowledge, trength, kill, and ability of Firt Nation and Inuit to plan, develop, implement, carry out, manage, and evaluate program and ervice needed in their communitie. A adminitration and governance of community program and ervice devolve to Firt Nation and Inuit communitie, Firt Nation and Inuit require acce to training which can facilitate their development of the elf-ufficiency to be able to manage and utain thoe program independently. By their nature, Initiative project, ervice, and activitie hould contribute to and encourage Firt Nation and Inuit elf-determination and capacity building, including innovation and creativity in the deign of project and activitie and the delivery of ervice. UNIVERSAL AND EQUITABLE ACCESS TO QUALITY PROGRAMS Initiative participant are entitled to the ame level and ame quality of ervice compared to other Canadian living in imilar location. ACCOUNTABILITY Project, ervice, and activitie undertaken a part of the Initiative hould be carried out and delivered efficiently and effectively, with an emphai on achieving goal and objective in a fically reponible manner. Project, ervice, and activitie undertaken a a part of the Initiative hould be accountable to the people that they erve. Thi accountability can be enhanced through community involvement in the planning, carrying out, proviion, implementation, and evaluation of uch project, ervice, and activitie. To enure accountability to individual, children, familie, and communitie erved, communitie need to be repreented in management tructure (e.g., teering committee with community member repreentation); they alo need to be informed about and meaningfully involved in making funding deciion. It Take a Community 9

16 Financial reporting tructure hall be conitent with accepted accounting tandard, practice, and method. Reporting tructure hall be etablihed and will include and inform individual, familie, communitie and government. Furthermore, eligible recipient undertaking project, ervice, and activitie a part of the Initiative hall evaluate the benefit of uch project, ervice, and activitie to the individual, children, familie, and communitie that they erve, a well a the fit between project, ervice, and activitie and the viion, goal and objective of the Initiative (decribed in Chapter 5). 10 Guiding Principle of the Initiative

17 Viion, Goal and Objective of the Initiative CHAPTER 5 VISION The viion and ultimate purpoe of the Initiative i to create condition in which maternal and infant health will flourih. Thi viion can be addreed by triving to achieve definable goal and objective. 5.2 GOALS GOALS The goal of the Initiative are to (1) prevent FAS/FAE birth, and (2) increae the knowledge, kill, and quality of life of FAS/FAE affected children, mother, father, and familie. Thee goal can be addreed by triving to achieve meaurable objective. OBJECTIVES OBJECTIVE #1 RAISING AWARENESS The aim of thi objective i to avert health problem relating to FAS/FAE before they occur by increaing the awarene of the general population, particularly young people, about FAS/FAE and the danger of drinking during pregnancy (thi i called primary prevention or health enhancement ). EXAMPLES OF RELATED INITIATIVE ACTIVITIES: Increae community awarene about FAS/FAE Ditribute culturally-relevant baic information (e.g., pamphlet, brochure, video, and webite) Utilize divere method of and etting for communication (e.g., conference, workhop, focu group, variou media, and pre releae) ESTABLISH EDUCATIONAL INITIATIVES RELATING TO FAS/FAE Create and deliver chool awarene curricula Create and deliver awarene curricula for variou egment of the community (e.g., parent, youth, and community worker) It Take a Community 11

18 OBJECTIVE #2 REACHING THOSE AT RISK The aim of thi objective i to identify and work with peron at rik, uch a pregnant women or women in their child-bearing year who conume alcohol ( women at rik ) and their partner, in order to reduce the rik of FAS/FAE (thi i called econdary prevention or rik reduction ). EXAMPLES OF RELATED INITIATIVE ACTIVITIES: Train community worker and health care profeional to deal effectively with peron at rik Deliver training Create referral network Facilitate acce to prenatal upport program Promote healthy community development Change community attitude, value, and belief Shift focu from blame to acceptance Create linkage and provide referral to other program deigned to ait peron at rik, uch a: Program that provide mental health ervice to peron at rik Program that provide detoxification ervice for pregnant women at rik, their partner, and their familie Program that develop pecialized detoxification method for pregnant women Program that addre the determinant of why women ue ubtance while pregnant, including: Dometic violence Iolation Poverty Reidential chool experience OBJECTIVE #3 WORKING WITH THOSE AFFECTED The primary aim of thi objective i to identify and work with FAS/FAE affected individual in order to leen the educational, ocial, and behavioural impact (complication, impairment, and diabilitie) of FAS/FAE by upporting them. Another aim of thi goal i to reduce the rik that thee individual will have FAS/FAE children themelve (thi i called tertiary prevention or minimizing complication and chance of recurrence ). EXAMPLES OF RELATED INITIATIVE ACTIVITIES: Create linkage and provide referral to other program deigned to upport individual with FAS/FAE, uch a: Program that increae early identification and diagnoi of FAS/FAE affected infant and children Program that etablih diagnotic infratructure 12 Viion, Goal and Objective of the Initiative

19 Train health care profeional Incorporate FAS/FAE iue in relevant pot-econdary curricula Train Firt Nation and Inuit, a well a their ervice provider, to ue trategie, method, and approache for upporting and teaching FAS/FAE individual Familie, ocial worker, community worker, educator, and jutice worker OBJECTIVE #4 CREATING LINKAGES The aim of thi objective i to create connection between related program and initiative to enure that (1) project, ervice, and activitie deigned to addre interconnected problem and iue are not fragmented and (2) people and organization with imilar or hared goal have the opportunity to hare information and expertie in an atmophere of cooperation, collaboration, and coordination. EXAMPLES OF RELATED INITIATIVE ACTIVITIES: Etablih and maintain channel of communication Forge and maintain partnerhip Encourage and provide opportunitie for networking At the community, regional, and national level Integrate related reource Take a multidiciplinary approach to FAS/FAE iue Encourage wholitic healing of communitie Reearch prevalence and context of FAS/FAE Implement need aement Addre underlying factor contributing to ubtance abue GLOBAL INITIATIVE EVALUATION The global evaluation of the entire Initiative (a oppoed to evaluation of pecific project, ervice, or activitie undertaken a a part of the Initiative, which i dicued on page 20) will involve aeing whether the four objective of the initiative have been accomplihed. It Take a Community 13

20 14A-A-A-L-E Evaluation Firt Nation/Inuit Specific Community Health Policy (FAS Awarene) Prenatal Care (Dr, Midwive, etc.) At Rik Awarene Holitic Women /Family Detox/A&D Elder Dometic Violence Children/Youth LINKAGES Mental Health Affected Women Group Early Diagnoi Men Group Education Early Intervention Infant Development Jutice Child Development School Program Parenting Program Youth Program Viion, Goal and Objective of the Initiative

21 Goal and Objective Preventing FAS/E Birth Increaing Quality of Life of FAS/E Affected OBJECTIVES Awarene general community At Rik target high-rik population Affected target FAS/E individual and familie Linkage connection between program ditribute culturallyenitive information focu group training S.W., Dr and midwive CHN & CHR mental health detox for women, partner and familie dometic violence diagnoi upport ervice training teacher and parent holitic healing networking need aement integration of ervice Drive the Deign of Strategie/Activitie It Take a Community 15

22 FAS/FAE Initiative Model Program Management Factor Program Component Health Promotion and Awarene Coordination Reearch Education and Training Peron & Family Diagnoi and Intervention Linkage Funding } Evaluation 16 Viion, Goal and Objective of the Initiative

23 Initiative Component CHAPTER 6 TARGET GROUPS Target group of the Initiative include FAS/FAE affected individual, peron at rik, familie, community member, health and ocial ervice provider, community leader, teacher and other educator, and correction and jutice ytem worker. OPERATIONAL DEFINITIONS OF INITIATIVE COMPONENTS Project, ervice, and activitie that are undertaken, provided, or carried out a part of the Initiative will fall into one of thee three categorie: HEALTH PROMOTION AND AWARENESS Thi component include project, ervice, and activitie that addre Objective 1 (Primary Prevention) by facilitating the wide-cale diemination of relevant, ueful, accurate, and eay-to-undertand information about FAS/FAE iue. Thi component conit of all effort at front-line, general awarene raiing in relation to FAS/FAE iue and the danger of drinking alcohol during pregnancy, including, but not limited to the following: workhop and forum aimed at community member in general, education effort in chool, video, brochure, pamphlet, and radio, televiion, and newpaper advertiing. Thi component will have the larget target group (eentially, the general public and all Firt Nation and Inuit community member, including children) and will be implemented in a wholitic fahion that addree the determinant of health in Firt Nation and Inuit communitie. EDUCATION AND TRAINING Thi component addree the need for capacity building in order for Firt Nation and Inuit communitie to undertake, provide, and carry out project, ervice, and activitie that addre Objective 1, 2, & 3 (Primary, Secondary, and Tertiary Prevention). It Take a Community 17

24 Thi component conit of all effort to educate and train familie, health and ocial ervice worker, teacher and educator, community worker, and correction and jutice ytem worker to provide ervice (1) in a way that i enitive to the need of individual and familie affected by FAS/FAE or (2) that pecifically addre FAS/FAE iue, including but not limited to the following: training teacher to ue effective intructional technique with FAS/FAE tudent, training Community Health Nure to acce referral reource for familie at rik, educating health care profeional and worker about the Firt Nation and Inuit cultural context of FAS/FAE, and training parent, foter parent, and family member to ue effective way of dealing with FAS/FAE children. IDENTIFICATION OF DIAGNOSTIC TOOLS AND INTERVENTION SUPPORTS Thi component include project, ervice, and activitie that addre Objective 3 (Tertiary Prevention and Minimizing Complication) by encouraging (1) the development of diagnotic infratructure and (2) the implementation of upport ytem and trategie deigned to increae the quality of life of individual and familie affected by FAS/FAE. Thi component conit of all effort to identify FAS/FAE individual and ubequently upport them and their familie in an effort to (1) reduce the impact of FAS/FAE on their live (i.e., reduce the chance of econdary diabilitie, uch a mental health problem) and (2) reduce the chance of thoe individual having FAS/FAE children themelve, including but not limited to: effort aimed at early identification and diagnoi, implementing appropriate teaching/learning trategie in claroom, implementing appropriate teaching/learning trategie in familie, intervention in the jutice ytem deigned to refer FAS/FAE affected individual to rehabilitation reource, and multidiciplinary care for FAS/FAE affected individual, including family upport medical care, counelling, occupational therapy, peech therapy, and teaching aitance. INITIATIVE MANAGEMENT FACTORS The exitence and quality of the following three factor influence the Initiative potential to achieve it goal and objective through the implementation of the component decribed above: LINKAGES Since funding for thi initiative i limited, the need to tretch funding a far a poible dictate that project, ervice, and activitie undertaken, provided, and carried out a part of the Initiative will need to make connection with related program and initiative that work to achieve imilar objective. Thi may take the form of cooperation with other program to carry out joint project through cot haring and leveraging (e.g., piggybacking onto already planned community health forum and workhop) and referral to appropriate exiting ervice provider (e.g., National Native Alcohol and Drug Abue Program). 18 Initiative Component

25 COORDINATION In order to enure that (1) project, ervice, and activitie deigned to addre interconnected problem and iue are not fragmented, and (2) people and organization with imilar or hared goal have the opportunity to hare information and expertie in an atmophere of cooperation and collaboration, project, ervice, and activitie undertaken, provided, and carried out a part of the Initiative need to be coordinated. Such coordination can be accomplihed through the development of active line of communication and effective networking ytem. Thi will lead to the harmoniou combination of program and interaction between organization and ervice provider. Furthermore, thi will enable ervice provider to achieve common goal and objective wholitically, addreing the determinant of health in a comprehenive fahion. RESEARCH Reearch i fundamental to the identification of area of need and evaluating the ucce of exiting project, ervice, and activitie. By identifying pattern of incidence and prevalence, need and prioritie can be confirmed, and contributing factor and underlying iue can be identified. The collection and analyi of data relating to incidence and prevalence can be ued to monitor and meaure the effect of prevention effort and conequently evaluate the ucce of prevention effort. INITIATIVE MANAGEMENT The Initiative will operate in conjunction with the CPNP (FNIC); accordingly, it will have trong link with that program. It will alo operate in partnerhip with the federal government, provincial/territorial government, and Firt Nation/Inuit organization, government, and communitie. Under the Initiative, the Federal Government, the region, and communitie will have the following role and reponibilitie: Federal Government will be reponible for: coordinating funding allocation, advocacy effort aimed at ecuring further funding, and framework liaion effort; communication information diemination (e.g., national FAS/FAE webite), and facilitating awarene (e.g., national awarene campaign); and in partnerhip with Firt Nation and Inuit communitie, and in recognition of the principle of Firt Nation and Inuit ownerhip, control, and acce (OCA), reearch and global initiative evaluation, including the collection, analyi, and reporting of pertinent tatitic. It Take a Community 19

26 The region will be reponible for: coordinating reource allocation, and linkage and partnerhip; training; and project upport, including capacity building, facilitating regional awarene, and facilitating community acce to reource. Firt Nation and Inuit communitie will be reponible for: project delivery; ervice proviion; activity implementation; and in partnerhip with the Federal Government, and in recognition of the principle of Firt Nation and Inuit ownerhip, control, and acce (OCA), reearch and global initiative evaluation, including the collection, analyi, and reporting of pertinent tatitic. The NSC will develop reporting requirement for eligible recipient, a well a criteria for reporting ucce (performance/outcome indicator) for project, ervice, and activitie undertaken, provided, or carried out a part of the Initiative component. Thee reporting requirement and outcome indicator will be incorporated into the term and condition of contribution agreement between FNIHB and eligible Initiative recipient. INITIATIVE EVALUATION Project undertaken, ervice provided, and activitie carried out under the Initiative need to include outcome-baed evaluation component. Outcome-baed evaluation for Initiative project, ervice, and activitie can be accomplihed by (1) creating pre-determined criteria (alo known a performance indicator ) that decribe the type of evidence that will how whether a pecific objective ha been met (what would it look like to meet that objective?) and then (2) meauring actual reult or outcome againt the pre-determined criteria (did the actual outcome look like the objective were uppoed to look like?). A key part of outcome-baed evaluation i careful and conciou planning that involve articulating (decribing) pecific objective or intended outcome for the project, ervice, or activity. Once clear and pecific objective have been identified and articulated, one create criteria (performance indicator) by aking, what will the reult look like if the objective are met? For example, one of the goal of the Initiative i to prevent FAS/FAE birth. If we achieve the goal of preventing FAS/FAE birth, thi will reult in evidence of decreaed incidence of FAS/FAE (number of FAS/FAE birth). Therefore, the evidence to meaure achievement of the goal i the incidence of FAS/FAE, and the criteria for uccefully achieving that goal will be decreaed incidence of FAS/FAE. Accordingly, to evaluate ucce in thi regard, the Initiative will have to include a component of data collection and record keeping in relation to the incidence of FAS/FAE in relevant population before and after the implementation of relevant Initiative component. 20 Initiative Component

27 Initiative Eligibility and Funding CHAPTER 7 ELIGIBLE PROJECT SPONSORS Becaue of the nature of the mandate of the Initiative (which correpond to FNIHB mandate), the Initiative i directed toward on-reerve Firt Nation, Firt Nation North of 60º, and Inuit communitie. The following group are eligible to receive FNIC/FAS/FAE Initiatie funding and ponor project: Firt Nation Band, Firt Nation and Inuit organization Tribal Council, provincial/regional Firt Nation and Inuit organization Community-baed organization or agencie, where upported by Firt Nation or Inuit government To be eligible for funding, applicant mut: demontrate that their project, ervice, or activity ha objective which further the goal and objective of the Initiative, without duplicating exiting ervice; demontrate that their project, ervice, or activity i well planned and ha a realitic chance of achieving it objective; demontrate that their project, ervice, or activity will be implemented, delivered, or carried out in a manner that i conitent with the principle of the Initiative, including, but not limited to: etablihing a community need, involving the community in planning and implementation, integrating and coordinating project, ervice, or activity with exiting program, and maintaining cultural enitivity and acceibility; and incorporate an outcome-baed evaluation component into their project, ervice, or activity. Within thi Framework, project developed in the Government of the Northern Territorie need to be developed in partnerhip with Inuit. It Take a Community 21

28 FIRST NATIONS AND INUIT FAS/FAE INITIATIVE BUDGET Fical Year National Special Project Community- Total Coordination Fund (NSC) Baed Project and Support * 2000/2001 $170,000 $910,000 $ 270,000 $1,350, /2002 $170,000 $480,000 $1,050,000 $1,700, /2003 $170,000 $250,000 $1,280,000 $1,700,000 Ongoing $170,000 $250,000 $1,280,000 $1,700,000 * Community-Baed Project will be jointly managed by Firt Nation, Inuit, and FNIHB at the regional level. NATIONAL COORDINATION AND SUPPORT Thi category decribe fund managed at the national level to fund the following: National Coordinator (alary, travel, and overhead), Corporate Service Tax, Communication Tax, National Forum (annual contribution), and National Steering Committee (travel, etc.). SPECIAL PROJECTS FUND (NATIONAL STEERING COMMITTEE) Thi category decribe fund managed at the national level to fund project that provide leaderhip to the region and have a national impact (e.g., national awarene campaign, environmental can, need aement, curriculum template development, and global initiative evaluation). Thee fund will be managed by the National Steering Committee (NSC). Each year, the NSC will (1) develop criteria and guideline that reflect and articulate trategic funding prioritie for that year and (2) uing thoe criteria and guideline, determine which project will receive funding. COMMUNITY-BASED PROJECTS Thi category decribe fund ditributed to the region to be ued for project with a regional and local community focu, including: regional coordination, regional awarene campaign, local awarene effort, the local adaptation of curricular model, and training. In 2000/2001, each region will receive $30,000, and the Northern Secretariat (Yukon, Northwet Territorie, and Nunavut) will receive $60,000. During 2000/2001, the NSC will review potential regional ditribution model and determine the mot appropriate formula to ue. Once ditributed to the region, thee fund will be jointly managed by Firt Nation, Inuit, and FNIHB at the regional level, with each region having dicretion in relation to the ditribution of fund to communitie. INITIATIVE FUNDING Given the amount of money involved in the Initiative ($3.8 million acro Canada over three year), there are inufficient fund to allocate a hare of fund to each Firt Nation and Inuit community acro Canada. If thi amount were to be divided equally amongt 600 communitie (a conervative etimate of 22 Initiative Eligibility and Funding

29 the number of Firt Nation and Inuit communitie in Canada), it would amount to about $ per community annually for the next three year. To ue the fund effectively, they need to be allocated trategically, ditributing them where they can do the mot good addreing priority goal. Given that ome of the objective of the Initiative can be met on a national level and remain the reponibility of the Federal Government under the term of thi framework, the FNIHB (at the national level) and the NSC will manage fund at the national level to accomplih objective aociated with the Federal Government reponibilitie (defined on page 19-20). The remaining fund will be ditributed to the region. Region will retain a portion of their allocated fund to cover the cot of meeting their reponibilitie under thi framework, uch a coordination (once again, defined defined on page 19-20). The remainder of the fund will be ditributed to eligible recipient, at each region dicretion, to undertake project, deliver ervice, and carry out activitie that addre priority goal and objective of the Initiative. Regional FNIHB office will make funding deciion in collaboration with Firt Nation and Inuit partner, after conultation with communitie. Once a propoed project, ervice, or activity ha received funding, that funding cannot be tranferred and mut be ued in a fahion that i conitent with the objective and plan of that project, ervice, or activity. A mentioned in the preface, the extra lifetime health care, education, correction, and ocial ervice cot to ociety aociated with an FAS/FAE individual have been etimated at US$1.4 million (Streiguth, 1991). Thi etimate wa part of a 1989 report on FAS preented to the Alaka State Legilature (Canadian Perinatal Surveillance Sytem, 1999). Since it i over 10 year old and applie to an American context, it i almot certainly an underetimate of the extra lifetime cot aociated with caring for an FAS individual in Canada. Thi etimate illutrate the potential cot that FAS/FAE repreent. Take the extra lifetime cot per FAS affected individual (US$1.4 million) and multiply it by the incidence of FAS (potentially 740 FAS birth a year in Canada). The total i over US$1 billion; thi repreent the total cot (in monetary term alone) of FAS to Canadian ociety for one birth cohort alone (group of children born in one year). Thi cot need to be balanced againt the continuing annual funding allocated to the Initiative (CND$1.7 million) when making FAS/FAE funding deciion in the future. It Take a Community 23

30 Initiative Implementation CHAPTER 8 COMMUNITY LEVEL Firt Nation and Inuit communitie choen will complete a work plan outlining the program activitie that will be offered to addre community need. The NSC will develop at the national level a tandard format and an Initiative guidebook that will clarify the work planning proce. Project work plan will be conitent with the Initiative guiding principle, viion, goal, objective, component, and management factor. At the Firt Nation and Inuit community level, Initiative activitie will include raiing awarene and training. Raiing awarene will conit of etting in motion and maintaining campaign utilizing variou tactic to raie awarene in the general public about FAS/FAE iue and the danger of drinking during pregnancy. Raiing awarene i broad enough to include a variety of media (e.g., radio, poter, and pamphlet) and activitie (e.g., the education of community health worker, and workhop/forum attended by community member) geared toward raiing awarene or education about FAS/FAE iue. Individual region and communitie will decide what raiing awarene mean to them baed on an aement of their current level of awarene and identification of awarene prioritie. Community awarene about FAS/FAE iue i a neceary foundation for the Initiative. Training i neceary to build capacity in Firt Nation and Inuit communitie. Training will conit of intructing ocial ervice, health care, education, and other important profeional, community worker, and family member how to effectively addre FAS/FAE iue at the local and graroot level in their communitie. REGIONAL LEVEL At the regional level, Initiative activitie will addre the need for regional leaderhip, coordination, communication, and integration. In partnerhip with Firt Nation and Inuit communitie, FNIHB region will etablih a regional coordination and management mechanim and clarify the coordination proce. At the regional level, Initiative activitie will include coordination and curriculum development. Coordination will conit of developing a coordination mechanim and identifying and developing opportunitie for leveraging, integration, and partnerhip. Coordination will help to make the Initiative cot effective. 24 Initiative Impementation

31 Curriculum development will conit of identifying, developing, and creating training, teaching, and learning programme and material (curricula) deigned to (a) educate or raie awarene about FAS/FAE (in the general community or with high-rik or affected individual), (b) build capacity of Firt Nation and Inuit communitie to addre FAS/FAE iue (e.g., training community worker method of upporting FAS/FAE affected individual), and (c) train profeional (e.g., doctor, nure, teacher), community worker, community member, and family member to addre FAS/FAE iue (e.g., raie awarene or upport FAS/FAE affected children). Curriculum development i neceary to provide the foundation for training effort, and to make the Initiative cot effective, curriculum development need to be carried out in an organized and ytematic fahion at the regional level. NATIONAL LEVEL At the national level, the NSC, which i made up of Firt Nation, Inuit, and FNIHB repreentative, will guide the development and implementation of the Initiative. At the national level, Initiative activitie will include raiing awarene, coordination, environmental can, need aement, and evaluation. At the national level, a National Coordinator will be directed by the NSC to undertake national-cale coordination activitie. At the national level, raiing awarene will involve a wide-cale national public information campaign deigned to raie awarene in Firt Nation and Inuit communitie acro Canada about FAS/FAE iue and the danger of drinking alcohol during pregnancy. An environmental (model and approache) can will conit of conducting an exhautive inventory of exiting model, approache, program, project, ervice, and activitie acro Canada that are available in Firt Nation and Inuit communitie and acceible by Firt Nation and Inuit clientele. An environmental can i neceary to identify foundation that can be ued a role model, built upon, and acceed in their preent form. A need aement will conit of aeing the need of Firt Nation and Inuit communitie by identifying the prevalence of FAS/FAE in individual communitie and determining the nature and everity of econdary diabilitie impacting FAS/FAE affected individual, their familie, and their communitie. A need aement i neceary to pecifically identify the nature and extent of community need and to determine area of focu (geographical and otherwie). Evaluation will conit of the development and implementation of an evaluation framework that will allow for the incremental evaluation of the effectivene of the entire Initiative in meeting it goal and objective. To be meaningful, evaluation ha to be incremental (tep by tep), o that each component of the Initiative can be evaluated after it ha been implemented, not before. Meaningful evaluation i eential to identify the outcome of the Initiative and to jutify current level of funding and make a cae for further funding. It Take a Community 25