HEALTH, SOCIAL AND EDUCATIONAL RESOURCES FOR CHILDREN WITH FAS/FAE IN TWO NORTHERN BC COMMUNITIES by Sandra Ollech BSN, The University ofBritish Columbia, 1978 THESIS SUBMITTED IN PARTIAL FULFILMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE m COMMUNITY HEALTH © Sandra Ollech, 2001 THE UNIVERSITY OF NORTHERN BRITISH COLUMBIA February 2001 All rights reserved. This work may not be reproduced in whole or in part, by photocopy or other means, without the permission of the author. 11 ABSTRACT The purpose of Study One is to describe and compare the demographic and health characteristics, and living arrangements of 83 children with Fetal Alcohol Syndrome/Fetal Alcohol Effects (F AS/F AE) who reside in Prince George and Fort St. James. The purpose of Study Two is to identify health, social and educational resources available to children with F AS/F AE who reside in these two communities. Study One reviews data collected as part of a larger study of 148 children with FAS/FAE conducted by Turpin, Ollech and Hay (1997). The children in Study One range in age from 3 months to 16 years and the majority have Aboriginal heritage. In Prince George 63% ofthe children are male, and in Fort St. James 50% are male. The primary disabilities of children in Study One included attention deficit and hyperactivity, delayed development, speech and language deficits, physical problems, and learning disorders and mental retardation. Study One profiles the secondary disabilities of mental health problems and parenting problems of the children. Study Two identifies 45 health, social and educational resources in Prince George, 20 in Fort St. James, and 2 provincial resources. A resource guide for children with F AS/F AE was developed. The purpose of this guide is to assist children, their caregivers, and service providers in locating appropriate services, to promote quality of life, and prevent or diminish development of secondary disabilities among children with FAS/FAE. Study Two also examines gaps in the identified services. The impact of prenatal exposure to alcohol has variable effects among the children with F AS/F AE, and these children need a broad range of health, social and educational resources. This broad range lll of needs requires an array of resources that are difficult to provide in Prince George and Fort St. James. In Prince George and Fort St. James the largest gap in services for children with F AS/F AE is a multidisciplinary resource center dedicated to the needs of children with F AS/F AE. Many of the resources identified in Study Two are designed to serve diverse groups of children, not children with F AS/F AE specifically. Children with FAS/FAE, the invisible disability, must compete for services with other children who have diagnosed and readily visible disabilities. Possibly, with a resource centre available for children with F AS/F AE in the north, these children will become visible. The need for resources that ameliorate the impact ofF AS/F AE and improve the lives of children and their caregivers is fundamental. lV TABLE OF CONTENTS Abstract 11 Table of Contents IV List ofTables VI List of Appendices Vll Acknowledgments Vlll Chapter One Introduction Research Focus on Children Research Focus on Intervention versus Prevention Research Purposes Defining the Research Goals and Objectives Importance ofthe Research Topic Chapter Two Review of the Literature Diagnosis ofFAS/FAE Incidence and Prevalence ofFAS/F AE Disabilities ofFAS/F AE Key Issues in Diagnosis ofFAS/F AE F AS/F AE Resources Need for Additional F AS/F AE Research Summary of Literature Review Chapter Three Study One Introduction Definitions Method Study One Findings Study One Discussion 1 1 2 4 6 7 8 9 13 18 22 28 29 30 30 32 38 62 v Chapter Four Study Two Introduction Definitions Method Study Two Findings Study Two Discussion 72 72 73 77 83 Conclusion 92 References 95 Appendices 101 vi LIST OF TABLES Table 1 Age of Children at Time ofDiagnosis ofFAS/FAE 40 Table 2 Reason for Referral to Dr. Hay 42 Table 3 Developmental and Speech Delays of Children with F AS/F AE 43 Table 4 Mental Health Diagnoses of Children with F AS IF AE 45 Table 5 Cognitive Diagnoses of Children with FAS IF AE 47 Table 6 Physical Diagnoses of Children with F AS IF AE 48 Table 7 Behavioral Diagnoses of Children with F AS/F AE 50 Table 8 Neurological Functioning of Children with FAS/F AE 51 Table 9 Cognitive Functioning of Children with F AS IF AE 53 Table 10 Affective Functioning of Children with F AS/F AE 54 Table 11 Behavioral Functioning of Children with F AS IF AE 55 Table 12 Custody Arrangements of Children with F AS/F AE 57 Table 13 Number ofMCF Placements for Children with FAS/FAE 59 Table 14 Purpose of Medications Prescribed for Children with F AS IF AE 60 Table 15 Resources Recommended for Caregivers of Children with F AS IF AE 62 vii LIST OF APPENDICES Appendix A Health Status Indicators 101 Appendix B Study One Variable List 103 Appendix C F AS/F AE Resource Guide 107 Appendix D Information Sheet 186 Appendix E Informed Consent Form 189 Appendix F Resource Questionnaire 191 Appendix G Resource Template 194 Vlll ACKNOWLEDGEMENTS I wish to acknowledge my indebtedness to a number of individuals who assisted me throughout this process. First, I would like to acknowledge the members of my committee, Dr. Cindy Hardy for her enthusiasm, guidance and expertise; Professor Glen Schmidt for his insight into F AS/F AE; and to Assistant Professor Shereen Ismael for her interest in this research. Secondly I wish to acknowledge Dr. Ternowetsky, Jeanette Turpin, Dr. Hay, Dr. Fish and the Child Welfare Research Centre without whom this endeavor may never have begun. Thirdly I wish to acknowledge the many children and their families who have been impacted by F AS IF AE and who were the impetus for this research. I hope this study benefits you by reinforcing the need for resources in your communities that are dedicated to the needs of children with F AS IF AE. I hope this work will help you find and use resources that will make your lives better. I also wish to thank the many individuals who provided information regarding resources for children with F AS/F AE. Without your help the resource guide would not have been possible. Finally, I wish to acknowledge my family. To my husband Steve who provided me with ongoing love and support. To my children Sean, Paul, and Matthew who grew up during this endeavor and provided me with joy and fun amidst all the work. To my parents William and Josephine Lloyd who gave me encouragement and hope. Thank you seems so inadequate in expressing my gratitude for what you have all done to help me during this long journey. You all instilled in me the confidence to overcome the many challenges and obstacles I encountered in order to reach my goals. Chapter One INTRODUCTION In 1968, Dr. Paul Lemoine and his colleagues from France identified a definite relationship between alcohol use and developmental birth defects. Lemoine's study of 127 children born to alcoholic mothers described four characteristic abnormalities typical of fetal alcohol syndrome: very peculiar facies, increased frequency of malformation, psychomotor disturbances, and growth and height retardation (Elliot & Johnson, 1983). Unfortunately these findings were largely ignored until 1973 when American researchers, Jones and Smith, identified 11 children with similar patterns of craniofacial anomalies, central nervous system (CNS) dysfunctions and deficiencies in growth (Streissguth, 1997b). Alcohol is now recognized as a major and common teratogen (LaDue, Streissguth, & Randels, 1992). Fetal Alcohol Syndrome and Fetal Alcohol Effects (F AS IF AE) are terms used to describe conditions that result from prenatal exposure to alcohol (Smitherman, 1994). The full-blown syndrome, FAS, is the major expression of a continuum of effects exerted by alcohol on the developing fetus (Greene & Wilbee, 1992). Children with FAE do not manifest all the physical features ofFAS, but have a clear history of prenatal alcohol exposure and CNS dysfunction (Streissguth, Barr, Kogan, & Bookstein, 1996). Research Focus on Children Although it is recognized that FAS/F AE result in lifelong deficits that negatively impact the functioning of many adults, my research focuses on children. Early intervention with children has the greatest potential for ameliorating the effects of 2 ~~IF AE. CI:!_ildren who have the benefit of early diagnosis, intervention, and consistent care from their caregivers are less likely to develop secondary disabilities. Information regarding the living situation of children with F AS/F AE and the caregivers with whom they reside is also included in this study. Caregivers of children with F AS/F AE include extended family, adoptive and foster parents and group homes rather than just birth parents since children with F AS/F AE reside with a broad range of caregivers. Turpin et al. (1 99~ found all__lo~g 148 children with F AS/F AE, only 27% lived with their birth parent(s). The majority, 73%, resided with related caregivers including aunts, uncles and grandparents, and unrelated caregivers, such as adoptive and foster parents or group homes. To assist caregivers in the challenging task of parenting children with F AS/F AE, resources need to provide services for the full spectrum of caregivers, not simply birth parents. Service providers such as teachers and F AS/F AE workers are viewed as resources for children with F AS/F AE and their caregivers, not as caregivers themselves. Research Focus on Intervention versus Prevention F AS IF AE can be totally prevented by abstaining from alcohol consumption during pregnancy. To ensure no one experiences the devastating consequences of F AS/F AE, prevention is clearly the optimum goal. However, not all women abstain from alcohol use during pregnancy. The prevalence of alcohol use among women of childbearing age, 18 to 34 years, ranges from 60% to 75%, with 4% considered to be alcohol abusers or alcohol dependent (Abel & Sokol, 1991; Gladstone, Nulmen, & Koren, 1996). According to one study of 6,000 pregnant women, drinking during pregnancy has increased in the past few years (Ebrahim, Floyd, & Bennet, 1998). The findings in a study conducted by Centers for Disease Control and Prevention (1997) show 3 the rate of frequent drinking among pregnant women (defined as more than seven drinks per week or more than five drinks per occasion) increased from 0.8% in 1991 to 3.5% in 1995. In addition, women are not always aware they are pregnant when they are drinking. The context for women who use alcohol during pregnancy is complex. For example, women with substance abuse problems are more likely to have been abused, have an addicted partner, have a psychiatric condition or emotional disorder, and be financially dependent than women who do not have substance abuse problems (Rothon, 1998). To change patterns of substance misuse and thus prevent F AS/F AE is a difficult task. While prevention ofFAS/F AE is important, it is unlikely total prevention of F AS/F AE will ever be achieved. There is a continuing need for intervention and services for children with F AS/F AE and their caregivers. Therefore I have chosen to focus my research on intervention rather than prevention. According to Streissguth (1997b), intervention efforts to help people with F AS/F AE have not kept pace with prevention initiatives. Although F AS/F AE have been recognized as major causes of developmental disability for over 20 years, Streissguth et al. (1996) state the lifelong implications of these disabilities have only been recognized for the past 10 years. The need for early diagnosis and intervention with children with FAS/FAE and their caregivers is often overlooked. According to Streissgyth (1997a), most of the writing about the fetal effects of alcohol has focused on describing F AS/F AE and very little has focused on how to help affected children-' These children and their caregivers deserve the attention of both researchers and service providers. Efforts to support and promote the well being of alcohol-affected children and their caregivers 4 should be implemented along with efforts to prevent future children from being born with FAS/FAE. Research Purposes My research is comprised oftwo studies, Study One and Study Two. Study One is an extension of a larger F AS/F AE study conducted by Turpin et al. ( 1997) through the Child Welfare Research Center (CWRC) at the University ofNorthern British Columbia (UNBC). Turpin et al. summarized medical records of 148 children diagnosed with F AS/F AE by one pediatrician in northern BC. Demographic and health characteristics and living arrangements of the children and their birth parents were described (Turpin et al.). Although the 148 children resided in over ten northern communities, Turpin et al. described these children as a group so it is unknown if there are any differences between children residing in different communities. Turpin et al. found the majority of children in their study resided in Prince George, therefore in statistical summaries, the characteristics of the Prince George children may obscure the characteristics of the children from other communities. Study One focuses on 83 children who reside in Prince George and Fort St. James who represent 56% ofthe sample in study conducted by Turpin et al. (1997). The two communities differ in a variety of ways such as total population, on-reserve population, location, and available resources (Statistics Canada, 2000). Possibly the characteristics and resource needs of the children with F AS/F AE also differ. The purpose of Study One is to describe and compare the demographic and health • characteristics and living arrangements of 83 children with F AS/F AE who reside in Prince George and Fort St. James. This information will assist in identifying the health, educational and social resource needs of children with F AS IF AE residing in these two 5 communities. In addition any differences in characteristics and resource needs between children residing in these two communities will be identified. Using the resource needs based on the characteristics and living arrangements of these children identified in Study One as a guide, the purpose of Study Two is to identify and describe the health, social, and educational resources available to children with FAS/FAE residing in Prince George and Fort St. James. Information about the characteristics of the majority of the caregivers of the children is unknown, therefore knowledge regarding their resource needs is also unknown. Although the resource needs of caregivers are unknown, the caregiver resources included in Study Two provide caregivers with respite, support, counseling, and education about F AS/F AE based on the recommendations ofTurpin et al. (1997). Turpin et al. (1997) recommended health, social and educational resources to assist children and their caregivers to cope with the problems related to F AS/F AE. What Turpin et al. could not address was the availability of recommended F AS IF AE resources. Study Two attempts to address this resource issue. Gaps in available resources will be examined by comparing resources identified in Study Two to: 1. Resources recommended for caregivers recommended by Turpin et al. (1997); 2. Resource needs based on demographic and health characteristics identified in Study One; 3. Resource needs based on primary and secondary disabilities associated with FAS/FAE; 4. Universal protective factors identified by Streissguth et al. (1997); and 5. The professional team structure identified by Clarren and Astley (1997). 6 The need for resources that ameliorate the impact ofF AS IF AE and improve the lives of children and their caregivers is fundamental. Health, social and educational resources can improve the behavioral, cognitive and physical functioning of children with FAS/FAE, and the ability ofthe caregivers to provide care. However, to be effective, health, social and educational resources need to be available. Defining the Research Goals and Objectives The goal of my research is to assist children with F AS IF AE, their caregivers, and service providers in locating appropriate services to promote quality of life and prevent development of secondary disabilities. A thorough description of the health, social and educational resources available to children with F AS/F AE and their caregivers residing in Prince George and Fort St. James will contribute to appropriate referral mechanisms used by service providers working with these children and caregivers, and will identify gaps in services that need to be addressed. Study One Objectives 1. Document the health, social and educational resource needs of children with F AS/F AE who reside in Prince George and Fort St. James. 2. Determine whether health, social and educational resource needs of children with F AS/F AE differ in the two communities. Study Two Objectives 1. Document health, social and educational resources available to children with F AS/F AE who reside in Prince George and Fort St. James. 7 2. Document resources that provide respite, support, counseling, and education regarding F ASIF AE to caregivers of children with F AS/F AE who reside in Prince George and Fort St. James. 3. Identify gaps between actual resource needs and availability of resources. Importance of the Research Topic The need for F ASIFAE research is gaining increased recognition in Canada. The June 1992 report ofthe Standing Committee ofHealth and Welfare, Social Affairs, Seniors and the Status of Women included several recommendations that identified the need for additional F AS/F AE research (Donovan, 1992). The Canadian Centre on Substance Abuse (CCSA) also identified that research needs to be undertaken to determine the most effective treatment and support for those diagnosed as having F AS and their caregivers (1996). Although the need for F ASIFAE research is recognized, little research has focused on the social and psychological needs of children (Giunta & Streissguth, 1988). There has been little action on the issues surrounding the availability ofhealth, social and educational resources, particularly for children with F ASIFAE and their caregivers living in a northern region. Without adequate early intervention provided by health, social and educational resources, many children with F AS IF AE develop secondary disabilities. One of the gaps identified by the Northern Family Health Society of Prince George (1997) was a current inventory of existing services. Service providers need to know what the child's resource needs are, and what resources are available, if they are to effectively intervene with children with F ASIFAE and their caregivers. 8 Chapter Two REVIEW OF THE LITERATURE Diagnosis ofF AS IF AE Diagnosis ofFAS is based on three primary characteristics of the child: (a) CNS dysfunction, (b) a distinctive pattern of craniofacial malformations, and (c) growth deficiency (Clarren & Astley, 1997; Mattson & Riley, 1997). A diagnosis ofFAS is assigned to those who have: (a) a clear history of prenatal alcohol exposure, (b) certain dysmorphic features, (c) growth retardation for height and/or weight below the 1oth percentile of normal growth; and (d) CNS dysfunction. Although CNS dysfunction is variable, it often presents as microcephaly, structural brain anomalies, hyperactivity, developmental delay, attention and/or memory deficits, learning disabilities and mental retardation, motor problems, neurological signs, and/or seizures. Facial malformations include short palpebral fissures, a long smooth philtrum, a thin upper lip, and flat midface. Growth deficiency can include both height and weight, and can persist into adulthood (Streissguth et al., 1997). A diagnosis ofFAE is used to describe those individuals who do not manifest all the physical features ofFAS, but have a clear history of prenatal alcohol exposure and CNS dysfunction (Streissguth et al. , 1996). Diagnosis ofFAE is particularly difficult because the children may not show many of the overt physical symptoms that characterize children with F AS. Kemp, a clinical nurse specialist with the Alberta Alcohol and Drug Abuse Commission, stated accurate diagnosis ofFAE children was necessary in order to give them optimum help (as cited in Greene & Wilbee, 1992). 9 Michael Dorris, a parent of three children with F AS, said "diagnosis doesn't solve our problems, or our children's, but it is healing, it is affirming, it is a candle in a long dark corridor" (1997, p. xxi). Incidence and Prevalence ofF AS IF AE Worldwide and Canadian Incidence and Prevalence ofFASIF AE The worldwide incidence ofF AS has been estima:ted at 1.7 per 1000 live births with the rate increasing to 3.3 per 1000 as older children are later identified (Abel & Sokol, 1987). Since Canada has no national data on FAS, the incidence ofFAS is estimated by Health and Welfare Canada to be between 1 to 2 per 1000 live births (Donovan, 1992; Greene & Wilbee, 1992). The BC FAS Resource group states that for the BC population, an incidence rate for F AS of 3 to 4 per 1000 live births is a reasonable estimate (MacDonald, 1991). Asante (1981) studied handicapped children in northern BC and Yukon communities and found evidence that prenatal exposure to alcohol affects one out of every three handicapped children. In a study conducted from 1992 to 1994, Habbick, Nanson, Snyder, Casey and Schulman (1996) attempted to identify all known cases ofFAS in Saskatchewan. From 1973 to 1992 the average incidence rate ofFAS in Saskatchewan was 0.585 per 1000 live births. Sokol (1988) suggests the worldwide incidence ofF AE may be 5 to 10 times higher than the incidence ofFAS. The incidence ofFAE in Canada is estimated to be at least 3 times that ofF AS (Donovan, 1992; Greene & Wilbee, 1992). The BC FAS Resource Society estimates the rate ofFAE may be as high as five to ten times the rate of FAS (Health and Welfare Canada, 1993). Ms. McPhee, Manager of Crabtree Comer, an inner city family drop-in center in Vancouver, reported a prevalence rate of 50% for 10 FAS/FAE and neonatal abstinence syndrome (NAS) among that center's clientele (Greene & Wilbee, 1992). According to Streissguth (1994a), the prevalence patterns ofFAS/FAE follow the trends for prevalence of alcohol-related problems in general. The National Longitudinal Survey of Children and Youth reported 16% of BC women consumed alcohol for part or all of their pregnancy (BC Provincial Health Officer, 1998). Armstrong, Loock and Robinson (1994) screened 1,721 pregnant women on Vancouver Island and found 14% were at significant risk for excessive drinking. Incidence and Prevalence ofF AS/F AE among Aboriginal Communities Although few studies exist, research shows F AS/F AE are serious problems in Canada and northern BC, particularly among Aboriginal people. According to the pretransfer needs assessments for the National Native Alcohol and Drug Abuse Program (NNADAP), about 70% of Aboriginal communities see alcohol and drug problems as priorities and rank them in the top three issues (McKenzie, 1992). According to the 1991 Aboriginal Peoples Survey, alcohol abuse is seen as a problem by approximately 60% of Aboriginal people, both in Canada and BC (Statistics Canada, 1993). Estimated rates of alcohol abuse among Aboriginal people range from 35 to 45% (Health and Welfare Canada, 1990). In a Vancouver Island study of 1, 721 pregnant women, more than half of the Aboriginal women (54%) were at significant risk for excessive drinking (Armstrong, Loock, & Robinson, 1994). Although specific rates ofF AS/F AE were not reported, research advisory committees at a joint meeting of the CCSA and the NNADAP identified the rates of alcohol-associated problems such as F AS/F AE as being extremely high for Aboriginal 11 people (McKenzie, 1992). One Aboriginal leader described the problem ofFAS/FAE among Aboriginal children as a crisis situation (Donovan, 1992). In a study ofthe incidence ofFAS in Saskatchewan, Habbick et al. (1996) found 86% oftheir study population were Aboriginal. Since only approximately 15 to 20% of all births per year in Saskatchewan are Aboriginal, 86% of the study population indicates there is a major over-representation of Aboriginal people with FAS. The Assembly ofFirst Nations estimates incidence rates ofFAS as high as 46 per 1000 live births among Yukon Aboriginal people and 26 per 1000 live births among Northern BC Aboriginal groups (Donovan, 1992). Robinson, Conroy and Conroy (1987) found the prevalence ofFAS to be 190/1000 among children in one isolated BC Aboriginal community. In one pediatrician's practice in northern BC, Turpin et al. (1997) show that the majority of children diagnosed with FAS IF AE in the study population are of Aboriginal descent. However, since Turpin et al. did not conduct a prevalence study, the prevalence of FAS/F AE among Aboriginal communities in northern BC is unknown. The maj ority of participants in a survey ofhealth care workers who provide direct services to Aboriginal clients felt that FAS was a priority concern in their communities (MacDonald, 1991 ). According to Ms. McPhee, who reported a prevalence rate of 50% for FAS IF AE and NAS, 80% of their Crabtree Comer clients are Aboriginal and most are single women (Greene & Wilbee, 1992). While FAS/FAE are not exclusively Aboriginal problems, they are a legacy ofthe poverty and unemployment experienced by many Aboriginal people that lead to substance abuse. Chief Sydney Garrioch, Assembly ofManitoba Chiefs, stressed the importance ofthe commitment of individuals and the community in resolving the 12 problems ofF AS/F AE without laying blame on individuals, mothers or Aboriginal communities (Health and Welfare Canada, 1993). ChiefGarrioch also identified the need for available resources for children with FAS/F AE and their caregivers. Difficulties in Establishing Incidence and Prevalence ofFAS/FAE Estimates of the incidence and prevalence ofFAS/FAE vary and are influenced by a number of factors. F AS/F AE__rates may be underestimate_d due to the difficulty in obtaining an accurate diagnosis (CCSA, 1996). Despite increased awareness of FAS/FAE, some individuals remain undiagnosed (Habbick, et al. , 1996). Habbick et al. also point out it is unlikely that a complete count of the number ofknown FAS/FAE cases can be achieved. In addition, those individuals born prior to the mid to late 1970's when F AS/F AE were initially recognized may not have been diagnosed. According to Streissguth (1997a) F AS/F AE can not be diagnosed by the presence or absence of any single major malformation. There are no confirming laboratory tests and no validated checklists. Diagnosis ofFAS/FAE depends on clinical examination and recognition of subtle physical, behavioral and psychosocial characteristics, and a history of maternal alcohol consumption. Estimates ofFAS/FAE incidence and prevalence are not conclusive in large part due to the methodological problems of these studies. For example, studies of_!!linority groups such as Aboriginal people may be biased. Two of the most common facial features associated with F AS, the flat philtrum an_g short palpebral fissures, occur normally among Aboriginal people. ~ o g to McKenzie (1996), retrospective studies over-sample groups in which FAS is expected to occur more frequently, and prospective studies may underestimate the incidence ofFAS/FAE since 13 women who are at greatest risk for bearing F AS/F AE infants often do not receive prenatal care. Disabilities ofFAS IF AE Primary Disabilities ofFAS IF AE Streissguth et al. define primary disabilities as "functional deficits that reflect the CNS dysfunctions inherent in the FAS or FAE diagnosis'; (1997, p. 27). Prenatal exposure to alcohol can have devastating consequences for children. Children with F AS/F AE often have difficulties with behavioral, cognitive and physical functioning. Growth deficiencies, delayed development, mental retardation, attention deficit, hyperactivity, learning disorders, social and emotional difficulties, vision and hearing deficits, speech and language deficits, facial and skeletal abnormalities, and cardiac anomalies are common problems among children with F AS/F AE (Turpin et al., 1997). According to Mattson and Riley (1997), children with prenatal exposure to alcohol display deficits in verbal learning, language, perception and intellectual development. In a follow-up of a prospective study of 22 children ranging in age from 11.5 to 14 years, Aronson ( 1997) reports that "a majority of children exposed to abuse levels of alcohol in utero had attention deficits, motor control problems, or both, in pre-adolescence. Specific learning disorders also were very common." (p. 23). Secondary Disabilities ofFAS/FAE According to Streissguth et al. "secondary disabilities are those that arise after birth and presumably could be ameliorated through better understanding and appropriate interventions" (1997, p. 27). Common secondary disabilities include mental health problems such as depression, disrupted school experiences, problems with parenting, 14 trouble with the law, inappropriate sexual behaviors, and alcohol and drug abuse. Streissguth et al. (1997) studied six main secondary disabilities: 1. Mental health problems - being diagnosed with a mental health problem or ever having gone to a psychotherapist or counselor for a mental health problem; 2. Disrupted school experience - having dropped out of school or having been expelled or suspended from school; 3. Trouble with the law - ever having been charged or convicted of a crime or been in trouble with the authorities; 4. Inappropriate sexual behavior- having been sentenced to a sexual offenders ' treatment program or having repeated problems with inappropriate sexual behaviors; 5. Confinement - ever having been incarcerated for a crime or inpatient treatment for mental health problems; and 6. Alcohol/Drug problems - having alcohol and/or drug abuse problems or having been in treatment for alcohol or drug problems. Streissguth et al. (1996) found mental health problems were the most prevalent of the secondary disabilities and experienced by over 90% of the participants in their study. Disrupted school experience and trouble with the law were the second most prevalent secondary disabilities and were experienced by 60% of the participants. Inappropriate sexual behavior and confinement were experienced by 50% of the participants, and alcohol and drug problems were noted for 30% ofthe participants. Rates of secondary disabilities were nearly equal across the sexes for mental health problems, inappropriate sexual behavior, and alcohol and drug problems. Disrupted school experience, trouble with the law, and confinement were experienced more often by males than females. 15 Secondary disabilities, with the exception of mental health problems, occurred more frequently in participants 12 years of age and older. Participants with F AE had higher rates of secondary disabilities when compared to participants with F AS (Streissguth et al., 1996). Children with F AE are more difficult to diagnose than children with F AS and receive fewer services, which may explain the higher rates of secondary disabilities for children with F AE. Legal Issues and F AS/F AE Trouble with the law is a common secondary disability of children with F AS/F AE (Streissguth et al., 1996). Youth with F AS/F AE are likely to have characteristics that bring them into conflict with other people and the criminal law system, or predispose them to become victims of crime. Judge Barnett (1997) stated he has heard many cases where youth affected by F AS/F AE are either charged with crimes or are victims of crimes. Fast, Conry and Loock (1999) estimated between 30 to 60% of juveniles offenders in one BC institution were affected by prenatal exposure to alcohol. LaDue and Dunne (1997) point out children with FAS/FAE have difficulty with comprehension of social rules, impaired ability to connect cause and effect, and have problems learning from past experiences. Behavioral difficulties also include impulsiveness, poor personal boundaries, and being easily influenced. Unfortunately, many people affected by F AS/F AE who come into contact with the legal system are not recognized as disabled. According to LaDue and Dunne (1997), little knowledge of the deficits associated with F AS/F AE has made it into the legal system. The behavioral and cognitive deficits of youth with F AS IF AE are often not - - - recognized by the courts, and the ability of these youth to understand the consequences of 16 their actio!!§Js fr_el}uently._oYerestimated. LaDue and Dunne suggest the juvenile court system be allowed enough flexibility to support and assist the youth with F AS/F AE, rather than simply to punish and warehouse them. F AS/F AE and Sexual Deviancy According to Streissguth et al. (1997), inappropriate sexual behavior is a prevalent secondary disability of children with F AS/F AE. Novick (1997) states professionals involved in the assessment and treatment of those charged with sexual crimes usually do not acknowledge the role ofFAS/FAE in criminal behavior. lfthe roles ofFAS/FAE are not considered, assessments are inaccurate, treatment is not appropriate, and incarceration is improper. Novick suggests long term monitoring and a structured supportive living environment are required in order to prevent the child with F AS IF AE from re-offending. However, according to Novick, few resources offering such environments are available. Even more important is prevention of inappropriate sexual behavior. Often legal problems can be avoided if early diagnosis and intervention minimize the problems that occur as a result of the impairments imposed by F AS IF AE. Protective Factors for Disabilities Secondary to F AS/F AE Streissguth et al. ( 1997) also identified eight universal protective factors associated with secondary disabilities in F AS/F AE. According to Streissguth et al., "a protective factor is a characteristic or condition that decreases the odds of a secondary disability occurring" (p. 27). Universal protective factors are those factors that apply to all six of the secondary disabilities. These eight universal protective factors in order of their strength are: 17 1. Living in a stable and nurturing home; 2. Being diagnosed before the age of 6 years; 3. Never having experienced violence against oneself; 4. Not having frequent changes of household; 5. Experiencing a good quality home; 6. Being found eligible for disabilities services; · 7. Having a diagnosis ofFAS (rather than FAE); and 8. Having basic (food and shelter) needs met. Of these protective factors, the three most powerful are not being a victim of violence, living in a stable and nurturing home, and not having frequent changes of household. Many alcohol-affected children have come from dysfunctional, transient, and abusive living situations. The study of secondary disabilities by Streissguth et al. (1996) revealed the following problems: 1. Half of the participants over 12 years of age had not lived in a stable and nurturing environment; 2. Half of the participants, 12 years and older, had not had their basic (food and shelter) needs met 3. Half of the participants had frequent changes of household; and 4. 72% of the participants had experienced physical or sexual abuse, or domestic violence. Two characteristics associated with a higher rate of secondary disabilities are having an IQ above 70 and having a diagnosis ofFAE as opposed to FAS. Those children who have an IQ of lower than 70 qualify for more services than children with a 18 higher IQ. Children with F AS are identified and diagnosed more readily than children with F AE, and are more likely to have received services. The correlations reported by Streissguth et al. (1996) may or may not be causative, however ifthere is better understanding of these secondary disabilities and the risk and protective factors that exacerbate or ameliorate these disabilities, the quality of life of children living with F AS/F AE and their caregivers can be improved (Streissguth et al. , 1997). Key Issues in Diagnosis ofFAS/F AE Early Diagnosis ofF AS IF AE Horowitz ( 1984) and Smitherman ( 1994) noted it is important to diagnose children with FAS/FAE at an early age. According to Streissguth and Randels (1988) early diagnosis is the key to the development of appropriate interventions. Early diagnosis and appropriate interventions may improve the child's life skills and adaptive functioning (Hinde, 1992; Isbell & Barber, 1993). Diane Malbin (1991) states that accurate and early identification is the basis for development of appropriate intervention and parenting strategies. Unfortunately, if diagnostic resources are not available, difficulties in the diagnosis ofF AS IF AE can delay intervention. Without a diagnosis, children and caregivers often cannot receive the services they require (Donovan, 1992; Streissguth, 1994a). Although early diagnosis was found to be a strong universal protective factor for all secondary disabilities, Streissguth et al. (1996) found only 11% of participants were diagnosed with F AS/F AE by age 6 years. Although there is no hard data, the BC F AS Resource Group, staff of the Infant Development Program, and respondents in a health care worker survey feel there are many children with F AS/F AE who have not been 19 formally diagnosed (MacDonald, 1991). Malbin (1991) suggests that if children with F AS/F AE are left undiagnosed, the implications are grave. Children who are identified later have a greater the risk that secondary disabilities will be deeply entrenched and may be less likely to benefit from treatment. Difficulty in Diagnosing FAS/F AE. A profound issue is the difficulty of diagnosing FAS/F AE. The clinical features and the degree of alcohol exposure range along a continuum and clinicians have been unable to agree on a simple diagnostic schema to deal with gradations in exposure and in effects (Clarren & Astley, 1997). F AS can be diagnosed at birth, however it is often overlooked in newborns. In a study of medical records of infants born to mothers with documented alcohol abuse during pregnancy, there was a 100% failure to diagnose F AS/F AE (Little, Snell, Rosenfeld, Gilstrap & Grant, 1990). There is no clear doseresponse relationship between maternal intake of alcohol and F AS/F AE, and it is unclear whether there is a safe level of alcohol use during pregnancy. There is no consensus on what level of alcohol use, apart from five or more drinks per day, or what pattern of drinking, such as binge drinking, results in F AS/F AE (CCSA, 1996). A factor that compounds the difficulty in diagnosing F AS IF AE is the underreporting of prenatal alcohol exposure (Streissguth, 1997a). Alcohol consumption is difficult to determine, particularly during pregnancy when concerns about the consequences of drinking may lead to significant under-reporting of alcohol use (CCSA, 1996). Access to prenatal care, the stress level and overall health of the mother, the mother's age and nutrition, the genetic resiliency of the infant and the mother, the mother's income and education, and 20 the timing and amount of alcohol consumption are some of the many factors thought to influence the severity ofFAS/FAE (Amos, 2000). Greene and Wilbee (1992) suggest accurate diagnosis ofFAS/FAE would be facilitated through development of a universal assessment tool that health professionals can utilize. Although a universal assessment tool is not available, some assessment tools are being developed and utilized in the diagnosis ofFAS/FAE. Dr. Hay, a pediatrician in Prince George, utilizes an assessment tool to assist in diagnosing children with F AS/F AE that was adapted from a tool developed by Sunny Hill Hospital in Vancouver, BC (Turpin et al., 1997). The Alberta Clinical Practice Guidelines Program has developed guidelines and diagnostic criteria that can be used for the diagnosis ofFAS (Alberta Partnership on Fetal Alcohol Syndrome, 1999). While these tools are a beginning, more work needs to be done to improve the accuracy ofFAS/FAE diagnosis. Children with FAS/FAE and their caregivers often endure years of enormous stress and confusion about why the children behave the way they do because the children are not correctly diagnosed (Greene & Wilbee, 1992). Benefits of Early Intervention Along with early diagnosis, children with F AS/F AE and their caregivers require early intervention. According to Hinde (1992), early intervention can make a dramatic difference to the success of children with FAS/F AE. In Hinde's experience many children with F AS/F AE who have the benefit of early intervention are able to achieve average developmental test scores by age three, despite their difficult start. Hinde goes on to say children who do not receive early intervention tend to be six to twelve months behind in development. While early intervention cannot alter the damage of prenatal 21 exposure to alcohol, it can improve the child's life skills and establish a foundation for later development (Hinde, 1992). Mrs. Carberry, a parent and member of the AlcoholRelated Birth Defects Committee of her local Association for Community Living, shared the following comments (Greene & Wilbee, 1992, p. 100) The early months after a child is born are absolutely critical to the future for that child. The need for good assessment, the need for knowing what (the) prognosis would be, and the need for realistic supports, especially with moms who are struggling with alcoholism and many other issues .. . We need, I believe, to work toward keeping these children in their families and with their communities ... I believe the struggle is to rescue this (situation) before the kids get dumped on or before the parents dump on themselves or go under financially ... many marriages break up over this. Children with F AS/F AE are often difficult to care for and exert an inordinate demand on the coping abilities of their caregivers. The behavioral problems of these children can exhaust even the most skilled caregiver (Turpin et al. , 1997). If ~ g _ become 'burnt out', and if they give up caring for the child, the child is at risk for becoming traumatized by moving from home to home. Clearly caregivers require early and adequate support to effectively care for children with F AS/F AE. In order to intervene early in the lives of children with F AS/F AE and their caregivers resources need to be available. 22 F AS IF AE Resources Recommended F AS IF AE Resources Recommended resources for children with F AS/F AE include infant stimulation and developmental programs; early childhood education; learning assistance; occupational and physiotherapy; speech and language therapy; hearing, vision and medical intervention (Community Consultation, 1993; Horowitz, 1984). Suggested resources for caregivers include respite care, counseling, peer support and information about F AS/F AE (Turpin et al. , 1997). According to Clarren and Astley (1997), the core group of professionals needed to diagnose F AS/FAE and implement treatment plans for the children and their caregivers should include individuals from six disciplines: medicine, psychology, speech and language pathology, social work, public health nursing, and family advocacy. Additional professionals might include psychiatrists, neurologists, educators, family therapists, lawyers, and parent support groups. Clarren and Astley also pointed out nearly all the clients with F AS identified through their clinic required coordinated services involving psychiatry, educational planning, behavioral therapy, family counseling, and drug and alcohol counseling. Children with F AS/F AE and their caregivers require health, social and educational resources in order to help ameliorate the impact ofFAS IF AE and improve their lives. These resources can improve the behavioral, cognitive, affective and physical functioning of children with F AS IF AE, and the ability of the caregivers to provide care. The demands on caregivers are enormous. Extreme fatigue is a constant drain, and the stresses on a marriage are very great (Greene & Wilbee, 1992). In many cases, adoptive 23 parents are unaware their children have been damaged by alcohol, and are faced with a situation for which they are totally unprepared (Greene & Wilbee, 1992). Availability of Resources In order to be effective, health, social and educational resources need to be available to children with F AS/F AE and their caregivers. Unfortunately, barriers often impede availability of resources to children with FAS/FAE and their caregivers. For example, geographical and knowledge barriers often impact the availability of resources. Resources may not be available in the child's home community, therefore the child and caregiver must travel to utilize resources. In addition, the child and caregiver may be unaware of available resources and the help these resources can provide. Rutman and Normand (1996) point out that insufficient resources coupled with systemic barriers to accessing the services that do exist were experienced as monumental challenges by caregivers. Decreases in funding can be devastating considering the availability of health, educational and social services has always been limited, particularly in northern communities (Schmidt & Turpin, 1996). The geographical expanse and smaller population density of the north negatively impact the financial feasibility of comprehensive services being made available to F AS/F AE children and their caregivers. More specialized services such as physiotherapy, speech and language therapy, and psychology are rarely available in northern and particularly rural communities. Lack of professionals who provide these services, such as physiotherapists, speech and language pathologists and psychologists, has a profound effect on the availability of resources in northern communities. Rural communities are also faced with a high turnover of health care staff (British Columbia, 1995). In addition, service providers in northern and rural 24 areas often do not have the knowledge to identify children with F AS/F AE or intervene effectively (Schmidt & Turpin, 1996). Health Status Indicators Lack of availability of resources can have a negative impact on the health of individuals residing in northern and rural communities. When compared to southern and urban residents, individuals living in northern communities such as Prince George and Fort St. James have poorer health status shown by health indicators such as life expectancy, alcohol-related mortality rates, and infant health. Prince George and Fort St. James are part of the Northern Interior Health Region, which has the highest potential years of life lost index in the province at nearly 1.3, compared to the lowest rate of just below 0.7 for Richmond and the North Shore (British Columbia, 1995). The Northern Interior Health Region also has the second highest alcohol-related standardized mortality rates in the province of just below 1.4, compared to the lowest rates in Richmond, Boundary and the Upper Fraser Valley. Rates of health status indicators differ between Prince George and Fort St. James and between these two northern communities and the southern community ofRichmond. The average rate of live births is higher in Fort St. James than in Prince George, at 24.15 and 17 per 1000 population respectively (BC Vital Statistics Agency, 2000). In Richmond the average rate of live births is halfthe rate in Fort St. James at 12.58. The rate for low birth weight infants is also highest in Fort St. James at 58.69 per 1000 live births compared to a lower rate of 54.8 in Prince George, and the lowest rate of 47.15 in Richmond. In addition, the rate of premature births is higher in Fort St. James than in Prince George and Richmond at 81.26, 68.2 and 60.54 per 1000 live births respectively. 25 The rate of stillbirths is slightly higher in Fort St. James with a rate of 11 .16 per 1000 total births, compared to a rate of 10 in Prince George. At 5 .44, the rate of still births in Richmond is nearly halfthat ofPrince George. However, the rate for infant deaths of8.2 per 1000 live births is higher in Prince George than the rate of6.77 in Fort St. James. The rate of infant deaths in Richmond is half the rate ofPrince George at 4.09. See Appendix A for a table of the health status indicators. For all four infant health indicators, Prince George and Fort St. James have consistently markedly higher rates than Richmond indicating poorer infant health in these two northern communities. Status of Current Health, Social and Educational Services for Children A broad-based assessment of the status of current health, social and educational services for children with FAS/FAE and their caregivers in Prince George and Fort St. James is important. What is working in FAS IFAE care and treatment? What gaps and inadequacies exist? Are treatment responses appropriately focused for the cultural composition of the communities? Many community groups need to participate in this assessment so that the full potential ofFAS IF AE children can be achieved (Health and Welfare Canada, 1993). The BC Northern Regional Community Connection Project (1997) evaluated F AS IF AE programs operating out of Prince George, Fort St. James and six other northern communities. Clients, community service providers, Community Advisory Committee members, staff members, and coalition executive members were contacted through interviews or questionnaires. The project evaluation identified the following weaknesses in the FAS/FAE programs: 26 1. Limited staff time and funding; 2. Lack of services particularly for parents/caregivers of children with F AS/F AE; 3. Limited services to First Nations communities; 4. Need for more community awareness about F AS/F AE and services available; and 5. The diversity of needs and services among communities in the Coalition (BC Northern Regional Community Connection Project, 1997, p. 56). Evaluation of client experiences with program services indicated services were accessible and clients cited few barriers to attending the program in their communities. These reports of accessibility and lack of barriers appear to contradict the same project's evaluation of program referrals where the data suggested that more specific information is needed about the services in each community and how to access these services. This lack of barriers to accessing services also contradicts the literature that points out availability of resources is often hindered by barriers. This apparent contradiction was not commented on in the report. Only four clients who were participating in the programs participated in the program evaluation, and those four may have already overcome any barriers to accessing the programs. Since 1992 a variety of initiatives in Prince George and the surrounding region have focused on issues surrounding FAS/FAE. In 1992 the Prince George Fetal Alcohol Action Committee (PGFAAC) was founded following a series ofF AS community workshops and other community awareness activities sponsored by the "Healthiest Babies Possible" Pregnancy Outreach Program in partnership with the BC F AS Resource Group, and alcohol and drug programs. In 1993 the PGFAAC sponsored an F AS 27 research and awareness campaign. In 1994, a letter was sent to the Community Action Program for Children (CAPC) Health Canada identifying support and commitment from community partners to address the need for prevention and direct intervention with clients identifying substance use issues during pregnancy. In 1994 the Regional Child and Youth Committee (CYC) surveyed service providers throughout the region for training and service needs. F AS education, and related services for children, families, caregivers, and service providers was identified as the highest priority across the region (Thio-Watts, 1997). In 1995 the Fetal Alcohol and Drug Effects Northern Regional Coalition was formed with funding from CAPC. In 1995 an F AS/F AE northern regional workshop was offered with participation from a broad cross section of professionals and caregivers. In 1996 a community planning meeting identified the goal of working toward developing a community-wide comprehensive model of service delivery for the prevention of F AS/F AE. Currently an F AS/F AE Community Collaborative Network task group (of which I am a member) is conducting research for the purpose of developing solutions generated by the community that will guide development of an F ASIF AE prevention policy framework in Prince George. Impact of Lack of Professionals' Awareness ofFAS/F AE Lack of awareness and knowledge ofF AS IF AE on the part of professionals has a negative impact on both the diagnosis ofFAS/FAE and the availability ofFAS/FAE resources. A recurring theme in the public hearings held by Greene and Wilbee (1992) was health care professionals were not well enough versed in the impact of alcohol on the developing fetus . There was also concern the diagnosis ofFAS/F AE was often delayed or incorrect because the physician was unfamiliar with the symptoms. The CCSA 28 observed that few medical professionals have received formal training on the effects of alcohol during pregnancy (Greene & Wilbee, 1992). Awareness ofthe nature ofFAS/FAE also needs to be developed among service providers. Many professionals who come into contact with F AS/F AE children and their caregivers are not aware the problems these people face are due to fetal alcohol exposure (Greene & Wilbee, 1992). Professionals in social services agencies, members ofthe legal system, and those working with child welfare services may be unaware that ' problem children' are often affected by fetal exposure to alcohol. This lack of awareness compounds the difficulties experienced by children with F AS/F AE and their caregivers. For example, according to Wentz (1997), there is a general lack of awareness about FAS in special education in the US. Problems identified by Wentz included lack of knowledge and education about FAS IF AE; inability to identify students with F AS IF AE; and lack of resources and funding. Turpin ( 1996) pointed out there are a large number of child protection workers in northern BC who lack knowledge ofFAS/FAE. The Canadian Nurses Association recommended that information on F AS/F AE be included in the curriculum ofhealth professionals (Greene & Wilbee, 1992). Need for Additional F AS/F AE Research In June, 1992 the report ofthe Standing Committee ofHealth and Welfare, Social Affairs, Seniors and the Status of Women was released. The recommendations identified the need for additional research and the need for new services for persons with F AS/F AE (Donovan, 1992). Several authors have identified the need for further F AS/F AE research that focuses on those affected by F AS/F AE. Kleinfeld points out that, although F AS/F AE involves permanent damage to the brain, it is not yet known what will happen 29 to children who have the benefits of early diagnosis and intervention, and she cites the need for further research (Kleinfeld & Wescott, 1993). Little research has focused on the social needs of children with F AS/F AE (Giunta & Streissguth, 1988). According to Streissguth (1994b) there is a need for more research on effective ways to modify and improve behavioral outcomes in individuals with F AS IF AE. There is also lack of knowledge regarding the physical and developmental needs of children with F AS/F AE and how to care for them (Health and Welfare Canada, 1993). Summary of Literature Review Although the incidence and prevalence ofFAS/F AE is difficult to establish, estimates indicate F AS/F AE are significant problems among northern communities. Children with F AS IF AE have varying degrees of difficulty with primary and secondary disabilities as a result of prenatal exposure to alcohol. Streissguth et al. (1997) identified eight protective factors that can decrease the odds of a secondary disability occurring. Health, social and educational resources may ameliorate the effects of primary disabilities, and may prevent the development of secondary disabilities. The availability of resources for children with F AS/F AE is an issue, particularly for children who reside in northern and rural communities. There is a need for a broad-based assessment of the status of current health, social and educational services for children in Prince George and Fort St. James ''-"; 30 Chapter Three STUDY ONE Introduction The purpose of this section is to outline the methods and procedures used in carrying out Study One. The objectives of Study One are to: 1. Document the health, social and educational resource needs of children with F AS/F AE who reside in Prince George and Fort St. James. 2. Determine whether health, social and educational resource needs of children with F AS/F AE differ in the two communities. The data utilized in Study One was collected as part of larger F AS IF AE study conducted by Turpin et al. in 1997. No new data were collected for Study One. The research design, sample selection, confidentiality of patient information, the method used to collect the data and the instrument used to gather the data in the study by Turpin et al. will be described. For Study One, the selected variables that will be summarized and methods of analysis will be outlined. Definitions ofF AS IF AE and caregivers are also discussed. Definitions Fetal Alcohol Syndrome and Fetal Alcohol Effects (FAS/FAE) are terms used to describe conditions that result from prenatal exposure to alcohol (Smitherman, 1994). The full-blown syndrome, F AS , is the major expression of a continuum of effects exerted by alcohol on the developing fetus (Greene & Wilbee, 1992). The term Fetal Alcohol Syndrome is used to describe children who exhibit the following characteristics: 31 1. Growth retardation in at least one of the following areas: (a) low birth weight for gestational age, (b) decelerating weight over time not due to malnutrition, and (c) disproportional low weight to height. 2. Characteristic pattern of facial abnormalities that include features such as small palpebral fissures, a flattened midface, thin upper lip and a smooth philtrum. 3. At least one of the following CNS abnormalities: (a) decreased cranial size at birth; (b) structural brain abnormalities; (c)neurological hard or soft signs (age appropriate) such as impaired fine or gross motor skills, neurosensory hearing loss; or (d) poor hand-eye coordination. 4. There must be a confirmed history of alcohol exposure during the pregnancy. Children with FAE do not manifest all the physical features ofFAS, but have a clear history of prenatal alcohol exposure and CNS dysfunction (Streissguth et al., 1997). The nomenclature used to describe children with alcohol exposure who do not meet the four criteria for F AS is varied. Initially, F AE was the term that was commonly used, but many medical practitioners believe this term is not specific enough in identifying the extent of disabilities in affected children. Newer terms being adopted include Alcohol Related Birth Defects (ARBD) which describe children who have congenital anomalies, and Alcohol Related Neurodevelopmental Disorder (ARND) which describes children who have CNS damage. Dr. Hay, the pediatrician involved in the Turpin et al. study ( 1997), uses the term "F AS IF AE continuum" to describe all children who have experienced prenatal exposure to alcohol. In this study, since F AE is a term commonly recognized by both professional and lay people, F AE is used to describe children who exhibit less than the full characteristics ofF AS. 32 According to Streissguth et al. (1997) children who have the benefit of consistent care from their caregivers are less likely to develop secondary disabilities. In this study, the term 'caregivers' is broadly defined to include both biologically related and unrelated caregivers. Related caregivers include birth parents and family members such as grandparents, aunts and uncles. Unrelated caregivers refer to adoptive and foster parents, friends ofthe family, and group homes. Teachers and FAS workers were seen as resources rather than caregivers, therefore were not included in this definition of caregivers. Method Research Design/Overview A descriptive method was used to address the research questions. The nature and extent ofFAS/FAE among children residing in Prince George and Fort St. James were examined through analyzing data previously obtained by Turpin et al. (1997) through chart reviews from one local pediatrician's patient records. The demographic and health characteristics and living arrangements of 83 children with F AS/F AE were summarized. The health, social and educational resources recommended by Turpin et al. (1997) were also summarized. Children from the two communities were compared to identify any differences in demographic and health characteristics, living arrangements and resource recommendations. Demographic and health characteristics, living arrangements and resource recommendations and any identified differences allowed the resource needs of the children residing in Fort St. James and Prince George to be identified. To identify any gaps in available health, social and educational resources in Study Two, specific resource needs were clearly identified in Study One. 33 Dr. Hay has been diagnosing children with F AS/F AE utilizing a standard assessment tool since 1993 . This diagnostic aid is derived from a tool established by the F AS/F AE Assessment team at Sunny Hill Hospital in Vancouver BC. This tool helps the physician complete a comprehensive assessment of children in a variety of categories, and provides an accurate assessment of whether a child has F AS/F AE. Using information contained on the F AS/F AE tool, as well as other related patient record information, data for this study were previously collected by Turpin et al. (1997) in four main categories : 1. The demographic characteristics of children with F AS IF AE; 2. The health profiles and medical treatment of the diagnosed children; 3. The living arrangements of children with F AS IF AE; and 4. The resources recommended by the pediatrician to maximize the functioning ofthe children with FAS/FAE and their caregivers. Demographic characteristics profile each child using variables such as place of residence, gender, age at the time of diagnosis, and cultural heritage. These characteristics provide an indication of what social and educational services are needed by the children. For example three-year-old Aboriginal children may benefit from an Aboriginal Head Start Program. The health profiles describe the physical, cognitive and behavioral problems of the children. This includes reason for referral to Dr. Hay, delayed development and speech, accompanying diagnoses such as congenital heart anomalies and respiratory problems, and functional ratings in the neurological, cognitive, affective and behavioral domains of the children. Physical, cognitive and behavioral problems indicate what 34 health resources are needed by the children. For example a child with a cardiac defect would require the services of a pediatric cardiologist. Resources recommended by Turpin et al. (1997) are described and include prescribed medications and caregiver supports. In addition information was collected on involvement of the Ministry for Children and Families (MCF), who the child currently resides with, and whether current caregivers were single or two parent families . Recommended resources and information about the living arrangements of children with F AS IF AE gives direct indication of the health, social, and educational resource needs of the children and their caregivers. Research Participants Study One utilizes secondary data previously collected by Turpin et al. (1997) from approximately 4,000 patient records from one pediatrician' s practice, that ofDr. M. Hay, located in Prince George, BC. The pertinent data were obtained utilizing a chart review of these records. No new data were collected for Study One. The children were selected from a sample of children identified as having F AS/F AE by Dr. Hay. All the children were diagnosed between 1993 and 1997 using a standard F AS/F AE assessment tool. Children who were diagnosed as F AS IF AE without the use of the assessment tool, and those whose assessment tool was incomplete, were excluded from the study. Although 148 children from several communities were included in the original study conducted by Turpin et al. (1997), only 49 children currently residing in Prince George and 34 from Fort St. James, for a total sample size of 83 children, are included in Study One. 35 Procedures Each patient record was identified using a case number only. No information identifying individual children was used. The names of the children that correspond to our coded record are stored in a locked filing cabinet in Dr. Hay's secured office which is protected by a security alarm system. The identity of the patient records that were utilized in the research are retained by Dr. Hay. Patient records remain in the same office. Approval for this process was obtained from the College of Physicians and Surgeons by Dr. Hay, and the UNBC Research and Ethics Committee for the CWRC FAS/FAE project conducted by Jeanette Turpin (Research Associate) and Sandra Ollech (Community Health Graduate Student). Analysis Methods Four categories of variables were examined in this study: demographic characteristics, health profiles, living arrangements of the children, and recommended resources. These data were coded and entered into the SPSS program by Turpin et al. (1997). See Appendix B for a list of the study variables. Frequency distribution and measures of central tendency were used to interpret the data. Study One examined four variables regarding demographic characteristics of the children with F AS/F AE: 1. Child's current place of residence (Prince George or Fort St. James); 2. Gender of the child; 3. Age of the child at the time of diagnosis; and 4. Cultural heritage ofthe child. 36 Children in the Turpin et al. study (1997) resided in over ten different communities. Information on current place of residence allows Study One and Study Two to focus on the needs of children with FAS/F AE who reside in Prince George and Fort St. James. Since diagnosis ofFAS/FAE is difficult and often delayed, information on the reason for the child's referral to Dr. Hay provides important data on resources children may require prior to a diagnosis ofF AS IF AE. Gender and age provide information regarding the type of resources that may be required by the children. For example, infants may require developmental services, while eight-year-olds may require educational resources. The cultural heritage of the child gives direction to the need for culturally specific services. Variables focusing on the health profiles of the children provide data regarding the need for specific health resources. Study One examined five health variables: 1. Reason for referral to Dr. Hay; 2. Developmental delays; 3. Speech delays; 4. Accompanying diagnoses - mental health, physical, cognitive, behavioral; and 5. Functional ratings- neurological, cognitive, affective, behavioral. If children have primary disabilities such as developmental and speech delays, they require early intervention resources from speech and physiotherapists. The accompanying diagnoses of the children also indicate the type of specific health resources they require. For example if some children have cardiac problems, they require the services of a cardiologist. Functional ratings of the children indicate whether the children have no problems with functioning, or mild, moderate or severe problems. Children who 37 have problems with functioning require resources to assist them in improving their ability to function, and prevent or decrease the development of secondary disabilities. The third category of variables examined included the living arrangements for children with F AS/F AE. Study One examined three variables: 1. Involvement ofthe Ministry for Children and Families (MCF); 2. Custody arrangements; and 3. Whether child resides in a lone or two parent family. Information about current custody arrangements such as whether MCF has been involved provides direction regarding the social resources the child and caregivers may require. The fourth category of variables examined included the resources recommended for children with F AS/F AE and their caregivers by Turpin et al. (1997). Study One examined two variables: 1. Resources recommended for the child (prescribed medications); and 2. Recommended caregiver resources. Children who are prescribed medications, particularly for behavioral purposes, often require additional assessment and intervention from a variety of health, social and educational professionals in addition to follow-up by their physicians. Children with the benefit of consistent care from their caregivers are less likely to develop secondary disabilities. Recommendations that indicate what resources may be required by the caregivers of children with F AS/F AE to enhance the ability of caregivers to provide consistent care are examined. 38 Study One Findings Demographic Characteristics of Children with F AS/F AE Study One profiled the demographic and health characteristics, and living arrangements of 83 children with F AS/F AE who resided in Prince George or Fort St. James at the time oftheir diagnosis ofFAS/FAE. Information was collected by Dr. Hay as part of the process of diagnosing the children with F AS/F AE. Demographic characteristics regarding the children included place of residence, age at the time of diagnosis, gender and cultural background. Health characteristics included reason for referral to Dr. Hay, developmental and speech delays, accompanying diagnoses, and problems with functioning. Living arrangements included involvement ofthe child with the Ministry of Families and Children (MCF), custody arrangements, the status of the caregivers and the number of placements experienced by the children. Resources recommended for children and caregivers by Dr. Hay were also examined. Information was not collected by Dr. Hay regarding caregivers other than birth parents, consequently information was not available for all caregivers. Much of the demographic information related to birth parents, particularly fathers, was also unknown. This information was unavailable because birth parents had not maintained contact with their children or because birth parents were not present when demographic information was obtained. Residence Of the 83 children in Study One, 24 (29%) were born in Prince George and 42 (50%) were born in Fort St. James. Of the 83 children, 17 (21 %) additional children were born in other communities and moved to Prince George prior to the diagnosis of 39 FAS/FAE (Turpin et al., 1997). Ofthe 42 children born in Fort St. James, 8 (19%) moved to Prince George prior to being diagnosed with F AS/F AE. At the time of diagnosis ofFAS/FAE, 49 children resided in Prince George and 34 resided in Fort St. James. Of the 49 children who resided in Prince George at the time of diagnosis, 25 (51%) were born in Fort St. James or other communities. Turpin et al. did not examine the reasons for this relocation, but suggested one reason may relate to availability of resources. Many of the children who are more severely affected with F AS IF AE require a myriad of services that may only be available in a more urban community. Age of the Children at Diagnosis The data in Table 1 profiled the age of children at the time of diagnosis. The children in Study One ranged in age from 3 months to 16 years. This was similar to the age range of birth to 17 years of age found by Turpin et al. ( 1997). Turpin et al. found 55% of children were diagnosed with FAS/F AE before the age of 8 years. This percentage was even higher for children who resided in Prince George where 70% were diagnosed before age 8 years. In Fort St. James, early diagnosis before age 8 years also occurred for the majority of children where 59% were diagnosed before age 8 years. The literature suggests that early intervention decreases the risk these children will develop secondary disabilities such as mental health problems and criminal justice involvement. Unfortunately, 30% of children residing in Prince George and 41% of children in Fort St. James were not diagnosed until the age of 8 years or older. This indicated a large percentage of children with F AS/F AE in Study One did not have the benefit of early diagnosis. 40 Table 1 Age of Children at Time of Diagnosis ofF AS IF AE Fort St. James Prince George Years of age Number Percent Number Percent 3 months-3 yrs 18 37 9 27 4-7 16 33 11 32 8-11 11 22 9 26 12-16 4 8 5 15 Total 49 100 34 100 Gender of the Children In Study One, 63% of the children who resided in Prince George were male and 3 7 % were female, which mirrored the pattern of 60% males and 40% females found by Turpin et al. (1997). This pattern was not reflected among the children in Fort St. James where equal numbers of children were male and female. Cultural Heritage of the Children Turpin et al. (1997) found that nearly 80% of the 148 children in their study were of Aboriginal heritage. The majority of the children in Study One were also of Aboriginal heritage. Of the children who resided in Prince George, 59% were Aboriginal and 39% were Caucasian. In Fort St. James all 34 (100%) ofthe children were Aboriginal. These data were consistent with the literature which suggests that many northern and remote Aboriginal communities in British Columbia have substantially 41 higher rates ofFAS/FAE. However, although no Caucasian children with FAS/FAE were identified in Fort St. James, it is important to recognize F AS/F AE are not exclusively problems among Aboriginal people. Possibly Caucasian children who resided in Fort St. James were not being identified, or were diagnosed by a different pediatrician. Health Characteristics of Children with F AS/F AE Children affected by prenatal exposure to alcohol can present with a variety of health problems. No one is able to predict accurately how much damage will occur as a number of factors such as nutritional status, age of the mother, time and duration of alcohol exposure on the fetus, and metabolism of the mother come into play. Developmental and speech delays were examined, as well as mental, physical, cognitive and behavioral diagnoses and functional ratings of the children with F AS IF AE who resided in both Prince George and Fort St. James. Reason for Referral to Dr. Hay Areas of difficulty among children affected by prenatal exposure to alcohol, which led caregivers to seek out a diagnosis were most often inappropriate or unmanageable behaviors, or delayed development or cognitive problems. The data in Table 2 showed 61% and 56% of the children who resided in Prince George and Fort St. James respectively were referred to Dr. Hay for behavioral reasons. Twenty percent and 23% of the children from Prince George and Fort St. James respectively were referred for developmental or cognitive problems. Only 12% and 15% of the children from Prince George and Fort St. James respectively were referred for physical problems. The least common reason for referral was due to placement issues which often referred to whether a 42 child should reside with their family of origin or in an alternate care arrangement through MCF. These findings are consistent with those ofTurpin et al. (1997). Table 2 Reason for Referral to Dr. Hay Prince George Fort St. James Number Percent Number Percent Behavioral 30 61 19 56 Developmental I cognitive 10 21 8 23 Physical 6 12 5 15 Placement 3 6 1 3 Other 0 0 1 3 Total 49 100 34 100 Reason for referral Developmental and Speech Delays CNS damage from prenatal exposure to alcohol can cause delays and deficits in speech and language, and achievement of developmental milestones. For 15 of the 83 children in Study One, it was unknown if they had a developmental or speech delay. Often for children who were diagnosed at a later age, developmental information was not available. Of the 43 children who resided in Prince George for whom information was known, 18 (42%) had a developmental delay (see Table 3). Ofthe 25 children who resided in Fort St. James for whom information was known, 11 (44%) had a developmental delay. Twenty-three (54%) ofthe 43 Prince George children, and 11 43 (44%) ofthe 25 Fort St. James children had a speech delay (see Table 3). When compared to the findings ofTurpin et al. (1997), where 53% ofthe children had a developmental delay and 51% had a speech delay, children who resided in Prince George and Fort St. James had a slightly lower percentage of delays. Clearly there is a need for developmental and speech resources for many of the children with F AS IF AE since over 40% ofthe children in Study One had developmental and .speech delays. Table 3 Developmental and Speech Delays of Children with F AS/F AE Prince George Type of delay Fort St. James Number Percent Number Percent Yes 18 42 11 44 No 25 58 14 56 Total 43 100 25 100 Yes 23 54 11 44 No 20 48 14 56 Total 43 100 25 100 Developmental Speech Note. It is unknown if 6 of the 49 children from Prince George and 9 of the 34 children from Fort St. James (15 children) have a developmental or speech delay. Accompanying Diagnoses Many children in Study One had diagnoses in addition to F AS/F AE that reflected problems that were specific to each child. For example, a child might have received an accompanying diagnosis of post traumatic stress disorder (PTSD), attention deficit with 44 hyperactivity disorder (ADHD), or a heart defect. Dr. Hay used both ADHD and attention deficit disorder (ADD) as diagnoses. These diagnoses would highlight problems that may or may not have been related to the prenatal exposure to alcohol, but were comorbid with the diagnosis ofFAS IF AE. The accompanying diagnoses were categorized into four areas: (a) the data in Table 4 referred to mental health concerns, which involved such concerns as family dysfunction, abuse, and neglect; and such diagnoses such as mood disorder (depression), and PTSD; (b) as shown in Table 5 the cognitive domain included learning disorders, ADD, and deficits in intelligence; (c) the data presented in Table 6 referred to physical problems such as respiratory infections and heart defects; and (d) As shown in Table 7 behavioral difficulties such as ADHD, conduct disorder (CD), oppositional defiance disorder (ODD), and sleep disorder were examined. Mental health diagnoses. The data in Table 4 indicated 55% of children in Prince George and nearly 70% of children in Fort St. James had a mental health diagnosis, and several children had more than one diagnosis. Family dysfunction, abuse or neglect were by far the most common mental health concerns of the children who resided in Prince George and Fort St. James. Family dysfunction, abuse or neglect were concerns for 17 (35%) ofthe children in Prince George and 16 (47%) ofthe children in Fort St. James. Only 19 (39%) and 10 (29%) children had no mental health diagnoses in Prince George and Fort St. James respectively. Children who resided in Prince George had a similar percentage of mental health diagnoses when compared to the children in the study by Turpin et al. (1997). However, children who resided in Fort St. James appeared to have slightly more mental health diagnoses (68%) than children in the study by Turpin et al. 45 (53%). Mental health services, particularly those that focus on family functioning, abuse and neglect are critical for the majority of children with F AS/F AE. Table 4 Mental Health Diagnoses of Children with F AS/F AE Prince George Fort St. James Mental diagnoses Number Percent Number Percent Family dysfunction/ abuse & neglect 17 35 16 47 Mood disorder 1 2 0 0 PTSD or grief and loss 3 6 1 3 Socially inappropriate 0 0 2 6 2 of above 4 8 2 6 3 or more of above 2 4 2 6 No mental diagnoses 19 39 10 29 Unknown 3 6 1 3 Total 49 100 34 100 Note. PTSD = Post-traumatic stress disorder. Cognitive diagnoses. Although one of the major deficits of children with a diagnosis ofFAS/FAE is CNS damage, the data in Table 5 indicated the majority of children who resided in Prince George and Fort St. James did not have a cognitive diagnosis. According to Dr. Hay, many of the children who had difficulty with cognitive functioning had an undiagnosed cognitive disorder (personal communication, December 46 13, 2000). Cognitive diagnoses are made by psychologists and possibly many of these children did not have a cognitive diagnosis because they had not been assessed and diagnosed by psychologists. Based on the determination of the child's cognitive functioning, Dr. Hay often made recommendations regarding the need for IQ testing in order to obtain a cognitive diagnosis for the child, however due to the limited availability of psychologists the majority of children did not appear to have access to this diagnostic resource. Among the children who resided in Prince George and Fort St. James, 72% and 47% respectively either did not have a cognitive disorder or had not been diagnosed. Turpin et al. (1997) found 57% of the children did not have a cognitive diagnosis. The two most common groups of cognitive diagnoses among the children who resided in Prince George and Fort St. James were ADD and learning disorders, and mental retardation. Of the children who resided in Prince George, 16% had a diagnosis of ADD or learning disorders, and 10% had a diagnosis of mental retardation. In Fort St. James the percentages were higher where 35% of the children had a diagnosis of ADD or learning disorders, and 12% had a diagnosis of mental retardation. The relatively small number of children with cognitive diagnoses, particularly mental retardation, may be the result ofthe difficulty in diagnosing cognitive disorders in young children, and the availability of resources for diagnosis of cognitive disorders in older children. This small number of children with a diagnosis of mental retardation has major implications for availability of resources since children must have an IQ ofbelow 70 to qualify for many resources. 47 Table 5 Cognitive Diagnoses of Children with F AS/F AE Prince George Cognitive diagnoses Fort St. James Number Percentage Number Percentage ADD/LD 8 16 12 35 Mental retardation 5 10 4 12 Two or more of above 1 2 2 6 No cognitive disorder or not diagnosed 35 72 16 47 Total 49 100 34 100 Note. ADD = Attention deficit disorder. LD = Learning disability. Physical diagnoses. The data in Table 6 indicated the majority of children in Study One had more than one accompanying physical diagnoses. For children who resided in Prince George, 45% had two, three or more physical diagnoses compared to 29% of children who resided in Fort St. James. Prince George children had a higher percentage and Fort St. James children had a lower percentage of two or more physical diagnoses when compared to the children in Turpin et al. 's (1997) study. Turpin et al. found 37% of the children had two or more systems affected. The single most common group of diagnoses was respiratory, and ear, nose and throat (ENT) disorders for 12% and 15% of children who resided in Prince George and Fort St. James respectively. Only 25 % of Prince George children and 32% of Fort St. James children had no accompanying physical diagnoses. Turpin et al. found only 28% of the children in their study had no physical diagnoses. Possibly the children who resided in Prince George were more 48 severely affected by F AS/F AE and therefore had more physical diagnoses. Another possibility is children who had more physical diagnoses moved to Prince George because of the greater need for medical services. The majority of children with F AS IF AE had a variety of accompanying physical diagnoses and required an array of medical services. Table 6 Physical Diagnoses of Children with F AS/F AE Fort St. James Prince George Physical diagnoses Number Percent Number Percent RespiratorylENT 6 12 5 15 Head/eyes/ dental 2 4 1 3 Heart 2 4 2 6 Elimination/GU/GI 3 6 3 9 Neuromuscular/ skeletal 0 0 1 3 2 of above 16 33 7 20 3 or more of above 6 12 3 9 Other 2 4 1 3 No problem 12 25 11 32 Total 49 100 34 100 Note. ENT =Ear, nose and throat. GU =genitourinary. GI =gastrointestinal Behavioral diagnoses. The data in Table 7 indicated the majority of children who resided in Prince George and Fort St. James had a behavioral diagnosis. In total, 71% of the children who resided in Prince George and 77% of the children who resided in Fort 49 St. James had a behavioral diagnosis. At the time the children in Study One were diagnosed by Dr. Hay, the behavioral diagnoses were made using the American Psychiatric Association Diagnostic and Statistical Manual ofMental Disorders (1987) third edition, revised. These findings for the children in Prince George and Fort St. James were slightly higher when compared to Turpin et al. (1997) who found 68% of the children in their study had a behavioral diagnosis. Of the children who resided in Prince George and Fort St. James, 45% and 65% respectively had a diagnosis of ADHD. ADHD, either alone or in combination with other disorders, accounted for 69% and 71% ofbehavioral diagnoses among children in Prince George and Fort St. James respectively. 50 Table 7 Behavioral Diagnoses of Children with F AS/F AE Prince George Behavioral diagnoses Fort St. James Number Percentage Number ADHD 22 45 22 65 CD &/or ODD 1 2 0 0 ADHD & CD/ODD 9 18 2 6 ADHD&other 1 2 0 0 ADHD & CD/ODD & other 1 2 0 0 Sleep disorder 1 2 1 3 Anger management 0 0 1 3 No behavioral diagnosis 14 29 8 23 Total 49 100 34 100 Percentage Note. ADHD = Attention deficit hyperactivity disorder. CD = Conduct disorder. ODD = Oppositional defiance disorder. Problems with Functioning Further evidence of the impact ofFAS IF AE on the child was found in the functional ratings assigned by the diagnosing physician. When assessing neurological, cognitive, behavioral and affective ability the diagnosing physician rated the child' s functioning as 'No Problem', 'Mild' , 'Moderate' , or ' Severe' problem. Neurological functioning. The neurological rating examined such abilities as balance, coordination, gait, movement, and reflexes, among others. The data in Table 8 indicated that although prenatal exposure to alcohol results in CNS damage, the majority 51 of children in Study One did not have any problems with neurological functioning. Of the children who resided in Prince George and Fort St. James, 78% and 82%, respectively, did not have any problems with neurological functioning. Of the children in both communities, 12% had mild problems with neurological functioning, and no children had severe problems. For a small percentage of the children it was unknown if the child had a neurological problem, or the child was too young to accurately assess. The findings of Study One were similar to the findings ofTurpin et al. (1997) who found 79% of the children in their study had no problem with neurological functioning, and 13% had mild problems. Table 8 Neurological Functioning of Children with F AS/F AE Prince George Fort St. James Problem Number Percent Number Percent None 38 78 28 82 Mild 6 12 4 12 Moderate 3 6 1 3 Severe 0 0 0 0 Unknown 2 4 1 3 Total 49 100 34 100 Cognitive functioning. Another indication of the CNS damage related to prenatal exposure to alcohol is the cognitive functioning of the child. Assessment of cognitive 52 functioning included intelligence and the ability to learn. Information regarding the cognitive functioning of the children came from a variety of sources such as reports regarding infant development for very young children. For school aged children, psychometric testing and school records, and reports from teachers and parents regarding the intellectual and learning performance of the child provided information regarding cognitive functioning. Based on the degree of reported difficulty with intellectual and learning performance and the consistency of problems both at school and home, the child may be identified as having problems with cognitive functioning. As shown in Table 9, 43% of the children in Prince George and 41% of the children in Fort St. James had problems with cognitive functioning. Fortunately, only 4% of the Prince George children and 9% of the Fort St. James children had severe problems with cognitive functioning. Turpin et al. (1997) found 38% of the children in their study had problems with cognitive functioning, and information was unknown for 47% of the children. For 41% of the children who resided in Prince George, and 50% of the children who resided in Fort St. James, their cognitive functioning was either unknown or the child was too young for an accurate assessment. The high percentage of children who had unknown cognitive functioning may be due to the lack of information available from the variety of sources, particularly psychometric testing. 53 Table 9 Cognitive Functioning of Children with F AS/F AE Prince George Fort St. James Problem Number Percent Number Percent None 8 16 3 9 Mild 10 21 5 14 Moderate 9 18 6 18 Severe 2 4 3 9 Unknown 20 41 17 50 Total 49 100 34 100 Affective functioning. Assessment of affective functioning focused on the child's age-appropriate emotional responsiveness in day to day situations. Problems in this area usually manifested in depression, oppositional disorders and manic behavior. As shown in Table 10, 50% ofthe children in both communities had problems with affective functioning. Almost equal percentages of children in Prince George and Fort St. James had mild or moderate problems with affective functioning at 22% and 25% respectively. Among the Fort St. James children, the largest group of children (29%) had moderate problems with affective functioning. The findings of Study One were similar to the findings ofTurpin et al. (1997) where 51% ofthe children had problems with affective functioning. 54 Table 10 Affective Functioning of Children with F AS/F AE Prince George Fort St. James Problem Number Percent Number Percent None 19 39 13 38 Mild 11 22 5 15 Moderate 12 25 10 29 Severe 2 4 2 6 Unknown 5 10 4 12 Total 49 100 34 100 Behavioral functioning. This category addressed the child's behavior including hyperactivity, impulsivity, ability to learn from mistakes, and the ability to control anger. As shown in Table 11, 78% and 76% of children who resided in Prince George and Fort St. James respectively had problems with behavioral functioning. These findings were similar to the percentage of74% found by Turpin et al. (1997). In both communities the largest group of children (35%) had moderate problems with behavioral functioning. For children in Prince George and Fort St. James, 18% and 23% had severe problems with behavioral functioning. Turpin et al. found 25% of children had severe problems with behavioral functioning. Children with behavior problems are at a higher risk for abuse as they severely challenge caregivers' coping abilities. In addition, inability to manage such 55 behaviors as anger, impulsivity and an inability to connect cause and effect result in children with F AS/F AE being in trouble with the law more often than other children. Table 11 Behavioral Functioning of Children with F AS IF AE Fort St. James Prince George Problem Number Percent Number Percent None 8 16 5 15 Mild 12 25 6 18 Moderate 17 35 12 35 Severe 9 18 8 23 Unknown 3 6 3 9 Total 49 100 34 100 Living Arrangements for Children with F AS/F AE A consistent and nurturing living arrangement is the foundation for all children to grow up and lead healthy, productive lives. This is particularly true for children with F AS IF AE. The findings of a study conducted by Streissguth et al. ( 1996) suggest three universal protective factors that help prevent the development of secondary disabilities are: (a) living in a stable and nurturing home; (b) not having frequent changes of household; and (c) having basic (food and shelter) needs met. These secondary disabilities include mental health problems, disrupted school experiences, and involvement with the criminal justice system. 56 Involvement with Ministry for Children and Families Caregivers of children with F AS/F AE often tum to MCF for assistance in managing their children. In Study One, no distinction was made as to whether MCF involvement was a child protection concern or a request for voluntary support services. Sixty seven percent (33) of the children who resided in Prince George, and 74% (25) of the children who resided in Fort St. James were currently receiving services from MCF, or had been involved with MCF in the past. Turpin et al. (1997) found 74% of the children in their study had involvement with MCF. Custody Arrangements Children with F AS/F AE lived in a variety of custody arrangements. As shown in Table 12, the majority of children from Prince George (59%) and Fort St. James (68%) did not reside with their family of origin. These other custody arrangements included extended families, adoptive families, and foster families and group homes. One child from Prince George was in the Youth Custody Centre. Forty one percent of Prince George children resided with their family of origin, and an additional 22% resided with extended family or an adoptive family. The pattern of custody arrangements differed somewhat in Fort St. James. Thirty two percent of children in Fort St. James resided with their family of origin and only 9% resided with extended family. No children from Fort St. James resided with an adoptive family. The majority of children from Fort St. James (59%) resided in foster care or a group home, compared to only 35% of children from Prince George. Turpin et al. (1997) found 51 % of the children in their study resided with foster families or group homes. 57 Table 12 Custody Arrangements of Children with F AS/F AE Prince George Fort St. James Number Percent Number Percent Family of origin 20 41 11 32 Extended family 9 18 3 9 Adoptive family 2 4 0 0 Foster family/group home 17 35 20 59 Jail 1 2 0 0 Total 49 100 34 100 Custody arrangements Caregiver Status Due to the multitude of problematic behaviors exhibited by many F AS/F AE children, they are often difficult to parent. Impulsivity, lack of ability to associate cause and effect, aggression and fearlessness are only a few among many disruptive behaviors that can bum out even the best parents. Parenting is challenging enough for two parents with healthy children. Parenting children with FAS/F AE is an even greater challenge, particularly for lone parents. In lone parent families, the single caregiver often carries this burden alone. Help in parenting children with F AS IF AE is often necessary particularly for children who reside in lone parent families . When the status of caregivers was explored, only 31 children from Prince George and 14 children from Fort St. James for a total of 45 children were included. These 45 58 children were being parented by their family of origin, or extended or adoptive families at the time the children were diagnosed with F AS/F AE. The other 38 children were being parented by foster families and no information regarding caregiver status was available. Of the children from Prince George, 20 (65%) resided with a lone caregiver. In Fort St. James the pattern was reversed where only 4 (29%) children resided with a lone caregiver. Children from Prince George lived with a lone caregiver much more often than children from Fort St. James. Turpin et al. (1997) found 45% ofthe children in their study resided with a lone caregiver. The children from Prince George resided with a lone caregiver more often than the children in Turpin et al.'s study. Number ofMCF Placements As shown in Table 13, the majority of children in foster care had been moved more than once. Number of placements were identified at the time the children were initially assessed by Dr. Hay. Thirty eight percent of the 49 children from Prince George and 26% of the 34 children from Fort St. James had two or more placements. The largest number of placements was 10 for a child from Prince George. Of the 49 children from Prince George and the 34 children from Fort St. James, 4% and 21% respectively had an unknown number of placements. Due to the large percentage of children from Fort St. James who had an unknown number of placements, it is possible the percentage of children with two or more placements could be higher. Turpin et al. (1997) found 41% of the children in their study had two or more placements, and 14% had an unknown number of placements. Thirty five percent of the children from Prince George and 32% of the children from Fort St. James had no placements through MCF. Turpin et al. found 25% of the children in their study had no placements through MCF. 59 Table 13 Number ofMCF Placements for Children with FAS/FAE Prince George Placements Fort St. James Number Percent Number Percent One 11 23 7 21 Two or three 4 8 1 3 Four to seven 3 6 3 9 Nine or ten 2 4 0 0 Unknown 2 4 7 21 Unknown but several 10 20 5 14 Not applicable 17 35 11 32 Total 49 100 34 100 Resources for Children with F AS/F AE and Their Caregivers Resources for Children with F AS/F AE Following assessment and diagnosis ofthe children with FAS/FAE, Dr. Hay offered recommendations and suggestions to benefit the children. One of Dr. Hay's recommendations was for medications. As shown in Table 14, 65% and 68% of the children in Study One who resided in Prince George and Fort St. James, respectively, were prescribed medication. For 41% of Prince George children and 32% of Fort St. James children the purpose for prescribed medications was behavioral. Turpin et al. 60 ( 1997) found 30% of the children in their study were prescribed medication for behavioral purposes. For 18% ofPrince George children and 27% efFort St. James children the purpose for prescribed medication was physical. Turpin et al. found 18% of the children in their study were prescribed medication for physical purposes. Only one child in Prince George and none in Fort St. James were prescribed medication for the purposes of mental health. Turpin et al. found only 3 of the children in their study were prescribed medication for mental health purposes. Four percent of Prince George children and 9% of Fort St. James children were prescribed medication for more than one purpose. The findings of Study One were similar to Turpin et al. who found 10% of the children in their study were prescribed medication for more than one purpose. Table 14 Purpose of Medications Prescribed for Children with F AS IF AE Prince George Purpose of medications Fort St. James Number Percent Number Percent Physical 9 18 9 27 Behavioral 20 41 11 32 Mental health 1 2 0 0 Two or more purposes 2 4 3 9 No prescribed medications 17 35 11 32 Total 49 100 34 100 61 Resources for Caregivers The manifestations ofFAS/FAE are difficult to cope with on a daily basis, therefore often the most immediate resource requirement for caregivers is for respite care. If adequate respite care resources are not available, there is a possibility the living arrangements for the child may break down. Dr. Hay recommended a variety of resources to assist these caregivers, and as a preventative ineasure in averting break down of the living arrangements of the children with FAS/F AE. As shown in Table 15 resources were recommended by Dr. Hay for caregivers who resided in Prince George and Fort St. James. Examples of recommended caregiver resources included respite, home support, parenting classes, counseling, support groups, and literature. Turpin et al. (1997) had similar findings in terms of recommended resources for caregivers. Often more than one of these resources were recommended. It is unknown however, whether the caregiver(s) followed up on these recommendations or whether the resources were available in the child's home community. The data in Table 15 indicated 39% of caregivers from Prince George and 61% of caregivers from Fort St. James were not recommended any resources. Dr. Hay indicated recommended resources may have been discussed with caregivers and not necessarily noted in the child's chart. Study Two will attempt to address the issue of availability of resources in Prince George and Fort St. James. 62 Table 15 Resources Recommended for Caregivers of Children with F AS IF AE Prince George Resources Fort St. James Number Percent Number Percent Counseling/ support 2 4 1 3 Education/literature 14 29 5 15 Respite/home care/ parenting classes 3 6 2 6 Two or more 11 22 5 15 No noted resources 19 39 21 61 Total 49 100 34 100 Study One Discussion Primarv Disabilities of Children with F AS/F AE Streissguth et al. define primary disabilities as "functional deficits that reflect the CNS dysfunctions inherent in the FAS or FAE diagnosis" (1997, p.27). As seen among the children examined in Study One, primary disabilities included attention deficit and hyperactivity, delayed development, speech and language deficits, physical problems, and learning disorders and mental retardation. Attention Deficit and Hyperactivity Study One shows that ADHD, either alone or in combination with other disorders such as CD and ODD, is by far the most common behavioral diagnosis of the children from both communities. Approximately three-quarters of the children in Study One have 63 behavioral diagnoses and have problems with behavioral functioning. In addition, the majority of children from both communities were referred to Dr. Hay for behavioral concerns. The percentages of children with problems with behavioral functioning and behavioral diagnoses are consistent among the children from both Fort St. James and Prince George. Clearly there is a need for resources in Prince George and Fort St. James that address the behavioral issues of children with F AS/F AE. Developmental and Speech Delays Study One indicates that a sizable portion of children diagnosed with F AS IF AE have developmental and speech delays among children from both Prince George and Fort St. James. Developmental delays was the second most common reason for referral to Dr. Hay. This number of children with delays points to the need for developmental and speech resources in both communities. Physical Problems Study One profiles the physical health problems of the children with F AS IF AE. The children have physical health problems that may be related to their prenatal exposure to alcohol, and comorbid diseases as well. Examples of illnesses include respiratory and ear, nose and throat; head or eyes, heart, elimination and neuromuscular diseases. The majority of children from both communities had one, two or more physical diagnoses, particularly the children from Prince George. Only a small number of the 83 children in Study One were referred to Dr. Hay for a physical problem, however nearly three quarters of the children had one or more physical diagnoses. It is unclear if these physical problems were not being diagnosed by the referring family physicians, or the children were being referred for a concern that was viewed as more of a priority than the physical 64 illnesses of the children. Children with F AS IF AE require services that can assess, diagnose and treat health problems in addition to F AS/F AE. Learning Disorders and Mental Retardation Study One indicates some children have cognitive diagnoses such as learning disorders or mental retardation. Twice as many children who reside in Fort St. James have learning disorders or ADD when compared to the children who reside in Prince George. The percentage of children with a diagnosis of mental retardation is small and nearly the same when children from both communities are compared. Considering the impact of prenatal exposure to alcohol on the CNS, it appears the percentage of children with a diagnosis of mental retardation should be higher. Children with cognitive dysfunctions may go undiagnosed because of difficulties in obtaining psychological assessments. Study One also indicates the children with F AS/F AE have problems with cognitive functioning, although for nearly half of the children their cognitive functioning is unknown. Children with cognitive diagnoses and problems with cognitive functioning require resources such as individualized plans for education, and learning assistance teachers, and teachers ' aides to provide one-on-one direction and supervision. Due to the large number of children who appear to have difficulty with cognitive functioning, but have not been diagnosed with a cognitive disorder, the major resource need appears to be access to a psychologist who is able to provide assessment and diagnosis of cognitive disorders such as mental retardation. This is particularly critical since access to some resources is dependent upon the child's level ofiQ. 65 Secondary Disabilities of Children with F AS/F AE According to Streissguth et al. "secondary disabilities are those that arise after birth and presumably could be ameliorated through better understanding and appropriate interventions" (1997, p.27). Common secondary disabilities include mental health problems, problems with parenting, trouble with the law, disrupted school experiences, inappropriate sexual behaviors, and alcohol and drug misuse. Study One profiled mental health problems of the children, parenting problems and identified one child who had trouble with the law. Study One had limited information regarding the experiences the children had with school disruptions, inappropriate sexual behaviors, and drug and alcohol misuse. Three secondary disabilities that are identified among the children in Study One are mental health problems, problems with parenting and trouble with the law. Many of the children have mental health diagnoses, family dysfunction and abuse and neglect concerns, and one child was in jail. Data regarding disrupted school experience is not available for the children in Study One, however children who have problems with behavioral and cognitive functioning likely have disrupted school experiences. Children with F AS/F AE require services that address secondary disabilities related to the diagnosis ofFAS/FAE. Mental Health Problems Study One identifies the majority of children with F AS/F AE in both Prince George and Fort St. James have mental health diagnoses. The percentages of children with mental health diagnoses and problems with affective functioning is similar among the children who reside in Prince George and Fort St. James. Family dysfunction, and 66 abuse and neglect are by far the most prevalent mental health concerns among the children from both communities. Study One points to the need for mental health services not only for the children who are experiencing social and emotional difficulties, but for the caregivers ofthe children as well. Protective Factors for Disabilities Secondary to F AS/F AE Streissguth et al. ( 1997) identified eight universal protective factors associated with secondary disabilities in F AS/F AE. According to Streissguth et al., "a protective factor is a characteristic or condition that decreases the odds of a secondary disability occurring"(p. 27). Universal protective factors are those that apply to all six of the secondary disabilities. The three most powerful protective factors that are addressed are living in a stable and nurturing home, not having frequent changes ofhousehold, and not being a victim of violence. In addition to the three most powerful protective factors, the protective factor of early diagnosis will be addressed. Frequent Changes of Household While Study One did not examine the length of time children resided in each of their living situations, Study One indicates many children have the experience of having frequent placements through MCF. The majority of the children from Prince George and Fort St. James do not live with their family of origin. Many of the children live with foster parents or in a group home, particularly those children who reside in Fort St. James where over half of the children reside with a foster family. Many of the children in Study One from Prince George and Fort St. James have had two or more placements. In addition, some of the children have experienced an unknown number of placements, particularly among children residing in Fort St. James. It appears that a large percentage 67 ofthe children in Study One do not experience the benefit ofthe protective factor of not having frequent changes ofhousehold. The findings of Study One show many children experience PTSD, affective disorders, grief and loss issues, and mood disorders which can be related to the frequent changes of placements many of the children experience. Study One shows one third of the children residing in Prince George and nearly half of the children residing in Fort St. James have been diagnosed with the mental health concern of family dysfunction, abuse or neglect. Other mental health disorders include mood disorder, post-traumatic stress disorder, and grief and loss. Some children from Prince George and Fort St. James have two or more mental health diagnoses. Less than a third of the children from Prince George and from Fort St. James did not have a mental health diagnosis. Study One also indicates that half of the children from Prince George and Fort St. James have mild, moderate or severe problems with affective functioning. Living in a Stable and Nurturing Home Many children in Study One do not have the benefit of living in a stable and nurturing home. For the 45 children in Study One who are parented by their family of origin, or extended or adoptive families, 65% of the children from Prince George are parented by a lone caregiver. In Fort St. James 29% of children reside with a lone caregiver. Many children experience instability of the home environment related to an absent parent. The majority of children in Study One currently receive services from MCF or had been involved with MCF in the past. Involvement with MCF may indicate the majority of children experience an unstable and non-nurturing home environment at least some of the time. Study One indicates many children suffer negative consequences 68 such as PTSD, affective disturbance, grief and loss, and mood disorders related to living in an unstable and non-nurturing home. From the findings of Study One, it appears the majority of the children from both communities do not have the benefit of nurturing and stable homes. Victims ofViolence The findings from Study One indicate many of the children from both communities experience family dysfunction, abuse or neglect. Children who reside with dysfunctional families are often victims of family violence. Witnessing or being a victim ofviolence can lead to PTSD, affective disturbance, grief and loss and mood disorders. Study One provides clear evidence children with F AS/F AE who reside in Prince George and Fort St. James suffer a multitude of negative consequences related to abusive, unstable, non-nurturing homes. Children with FAS/FAE who reside in Prince George and Fort St. James do not have the benefit of the three most powerful protective factors : living in a stable and nurturing home, not having frequent changes of household, and not being a victim of violence. Study One clearly indicates the majority of children experience the secondary disability of mental health diagnoses. Resources that assist caregivers in maintaining stable and nurturing homes are critical for supporting the well being of children with F AS/F AE and their caregivers. Early Diagnosis ofF AS IF AE Early intervention requires recognition of children with F AS/F AE, and early diagnosis. Findings from Study One indicate that while many children from Prince George and Fort St. James are identified early and have the opportunity to participate in 69 early intervention programs, a large number of children are not diagnosed until they are 8 years of age and older. If developmental and speech interventions are to be effective, intervention needs to begin early when the child is as young as possible. Diagnosis after the age of 8 years does not allow this group of children to gain the benefits of early developmental and speech intervention. Study One indicates that while a large percentage of children are diagnosed with F AS IF AE before the age of 8 years, one third of the children residing in Prince George and nearly half of the children residing in Fort St. James are not diagnosed until age 8 or older. It has been recognized that optimal outcomes for children with F AS IF AE are predicted for those who are assessed early and have the benefit of appropriate intervention. In order for this to occur, diagnostic resources need to be available to children residing in Prince George and Fort St. James. Aboriginal Heritage and Culturally Appropriate Resources The demographic profile of the children in Study One indicates the majority of children diagnosed with F AS/F AE who reside in Prince George and particularly Fort St. James are of Aboriginal heritage. This points to the need for resources that provide culturally appropriate services. Differences between Children Residing in Prince George and Fort St. James Study One shows children with F AS/F AE have a variety of disabilities that require a broad range of resources. While the children who reside in Prince George and Fort St. James are similar in many aspects, they do differ. For example, nearly one quarter of the children who were born in Fort St. James relocated to Prince George prior to diagnosis ofFAS/FAE. None ofthe children born in Prince George relocated to Fort St. James. The children in Fort St. James are all Aboriginal, whereas just over half of the 70 children who reside in Prince George are Aboriginal. The gender split among the children from Prince George is approximately 60% male, however there are an equal number of males and females in Fort St. James. More of the children from Prince George reside with either their family of origin or extended family, and more children in Fort St. James reside with foster families. More children in Fort St. James have an unknown number of placements through MCF. More children in Prince George reside with a lone caregiver, and children in Fort St. James are more likely to live with two caregivers. More children in Prince George have physical diagnoses, and more children in Fort St. James have cognitive diagnoses. More children are diagnosed with FAS/FAE before the age of 8 in Prince George than in Fort St. James. The children from Prince George and Fort St. James are also similar in many aspects. The age range, the reasons for referral and the percentage of developmental and speech delays are similar. Most of the children in both communities do not reside with their family of origin, the most common mental health diagnosis is family dysfunction, and a similar percentage of children from both communities have been involved with MCF. Children from both communities were similar in terms of cognitive, neurological, behavioral and affective functioning. In both communities, the majority of children have no problems with neurological functioning. The children from both communities had the same behavioral diagnoses and medications were prescribed for the same purposes, typically behavioral or physical purposes. Children with F AS/F AE from Prince George and Fort St. James need a broad range of health, social and educational resources that will address primary and secondary disabilities related to F AS/F AE. These children also require services that will address the 71 protective factors that may help prevent or diminish the impact of secondary disabilities. The need for resources that ameliorate the impact ofFAS/FAE and improve the lives of children and their caregivers is fundamental. Study Two identified resources available for children with FAS/FAE in two communities, Prince George and Fort St. James. Limitations of Study One The Turpin et al. (1997) study described children with FAS/FAE in one pediatrician' s practice. Turpin et al. were not able to determine the prevalence of FAS/FAE in Prince George and Fort St. James. The health, social, and educational resource needs of the caregivers can not be derived from the characteristics of the caregivers since this information is unknown for the majority of caregivers. No data regarding the characteristics of caregivers is available for other than birth parents, and the majority of the children did not reside with their birth parent(s) at the time of diagnosis, therefore information regarding the characteristics of the majority of caregivers is unknown. No direct information regarding some of the common secondary disabilities related to FAS/F AE was collected. For example there was no information regarding criminal offenses committed by the children, how many school suspensions the children had experienced, or how many children had demonstrated inappropriate sexual behavior. In Study One no distinction was made as to whether MCF involvement was a child protection issue or a request for voluntary support services. Study One was not able to determine how many children were in the care ofMCF in order to access services. 72 Chapter Four STUDY TWO Introduction The purpose of this section is to outline the methods and procedures used in carrying out Study Two. The objectives of Study Two are to: 1. Document health, social and educational resources available to children with FAS/FAE who reside in Prince George and Fort St. James. 2. Document resources that provide respite, support, counseling, and education regarding F AS/F AE to caregivers of children with F AS/F AE who reside in Prince George and Fort St. James. 3. Identify gaps between actual resource needs and availability of resources. A questionnaire was used to gather data on resources for children with F AS/F AE and their caregivers residing in Prince George and Fort St. James. Definitions In this study 'resource needs' refer to the health, social and educational resource needs ofthe children identified in Study One. 'Resources' are defined as agencies, groups, or individuals who provide services for children with F AS/F AE and their caregivers. 'Health resources' focus on physical, developmental, behavioral and mental health aspects of children with F AS IF AE. For example the services provided by pediatricians, psychologists and physiotherapists are viewed as health resources. 'Social resources' focus on the behavioral and affective functioning of children with F AS IF AE. For example, services provided by social workers, MCF, counselors, daycares, and Youth 73 Forensics are viewed as social resources. 'Educational resources' focus on the cognitive, intellectual and behavioral functioning of children with F AS/F AE and include, for example, the services provided by teachers, teachers' aides, school districts and preschools. 'Resources for caregivers' focus on those services recommended by Turpin et al. and include services that provide respite, support, counseling and information regarding FAS/FAE. Sources of information regarding FAS/FAE such as books, newsletters and internet web sites are also viewed as educational resources. Gaps in resources are defined as services that are identified as needed but are not available to children with F AS/F AE and their caregivers. Gaps in available resources were examined by comparing resources identified in Study Two to: 1. Resources recommended for caregivers by Turpin et al. (1997); 2. Resource needs based on demographic and health characteristics examined in Study One; 3. Resource needs based on primary and secondary disabilities associated with F AS IF AE; and 4. Universal protective factors identified by Streissguth et al. (1997). Method Research Design /Overview Gaps in F AS/F AE resources are evaluated in Study Two. Study Two also examines needed improvements in existing services for children with F AS/F AE and their caregivers. Resources examined in Study Two include those that have been identified through my previous knowledge of resources in Prince George, the work of the F AS Community Collaborative Network in Prince George, through contact with MCF, Carrier 74 Sekani Family Services and a F AS worker from Fort St. James. Additional resources include those identified by key informants who participated in Study Two. See Appendix C for a list of these resources. To study the resources available for children with F AS/F AE and their caregivers, a structured telephone interview was conducted. The information collected was collated into a resource guide for distribution to local agencies and families (see Appendix C). The resource guide documents available services in Prince George, Fort St. James and includes two provincial resources for children with F AS IF AE, their caregivers, and service providers. Web resources and books are also part ofthe resource guide. This guide will increase knowledge of resources available to these children and their caregivers. Research Participants The resources of primary interest in this study are health, social and educational resources that provide services to children with F AS/F AE who currently reside in Prince George and Fort St. James. Additional resources of interest are those that provide respite, support, counseling and education for caregivers of children with F AS/F AE. The communities of Prince George and Fort St. James were chosen because 56% of the children with FAS/FAE identified by Turpin et al. (1997) currently reside in these two communities. These resources currently provide services to children and their caregivers in Prince George and Fort St. James and were able to direct me to other resources providing services for children with F AS/F AE and their caregivers. Procedures Given the geographical distance between Prince George and Fort St. James, the limited time frame in which to complete the study, and the difficulty in getting responses 75 to a mailed questionnaire, a telephone interview appeared to be the best option for collecting data. The majority of interviews were conducted via telephone, however faceto-face interviews were conducted when requested by the key informants. Usually prior to conducting the interview, or occasionally during the interview with the key informants, I identified the following information for each resource: the name, location, mailing address, phone number, and fax number. Some resources also provided an e-mail address. For most resources I telephoned the resource to identify the director, coordinator or provider of the service. For some resources I knew the key informant previously, and for a few resources I was introduced to the key informant by another key informant. These key informants were the most knowledgeable regarding the services provided by the resource and were the best source for the data collected. Each resource was called to make an appointment for the telephone or face-to-face interview. Information regarding Study Two was faxed to the identified key informants prior to the interviews (see Appendix D). For those key informants who preferred to conduct the interview at the time of initial contact, information regarding Study Two was faxed to the informants at the earliest opportunity (usually the following day). With the majority of interviews, consent was obtained from each key informant immediately prior to initiating the interview (see Appendix E). On the request of some key informants, a draft ofthe resource information was faxed to the key informant along with a copy of the informed consent form. The completed consent form was faxed back to me with any needed corrections to the resource information. A structured questionnaire was utilized to gather the data for Study Two. A copy of the questionnaire is included in Appendix F. A total of 45 resources were contacted in Prince George, and 20 resources in Fort St. James. 76 Two provincial resources were also contacted. Questions focused on following aspects of each resource: 1. How clients gain access to the resource; 2. A description of the clients; and 3. What services are provided. Each questionnaire was identified with the name of the resource. No information identifying individual clients utilizing the resources was used. Names of respondents providing information about the resource were kept confidential on the request of the respondent. During each telephone interview, data about each resource were transcribed onto a resource template. The resource template was structured in the same format as the questionnaire for ease of transcribing information collected during the telephone interview. See Appendix G for a copy of the resource template. To ensure the information collected about each resource was correct, a draft of the information was faxed to each key informant. The key informants were asked to review the information for accuracy, to ensure the contact person was identified correctly, and fax back any corrections. A copy of the resource guide and a summary of the thesis findings was provided to each participant. Analysis Methods To document the resources available to children with F AS/F AE and their caregivers residing in Prince George and Fort St. James, the data transcribed on the resource template completed for each resource were reviewed and summarized. Gaps in resources were analyzed by comparing available resources with: (a) the health, social and educational resource needs identified in Study One, (b) resources recommended by 77 Turpin et al. (1997) for the children and their caregivers residing in Prince George and Fort St. James, (c) primary disabilities identified by Streissguth, (d) secondary disabilities identified by Streissguth, (e) protective factors identified by Streissguth, and (f) the professional team structure of individuals from six disciplines (medicine, psychology, speech and language pathology, social work, public health nursing, and family advocacy) recommended by Clarren and Astley (1997). Study Two Findings The findings of Study One assisted in identifying the health, social and educational resource needs of children with F AS/F AE who resided in Prince George and Fort St. James. Resources were defined as agencies, groups or individuals who provided services for children with F AS/F AE. Using resource needs based on the demographic and health characteristics, and living arrangements of the children in Study One as a guide, Study Two identified and described the health, social and educational resources available to children with FAS/FAE who resided in Prince George and Fort St. James. Information for Study Two was collected through interviews with key informants from a variety of resources located in Prince George, Fort St. James and BC. A range of health, social and educational resources were identified in Prince George, but resources were more limited in Fort St. James. In Prince George 45 resources were identified and in Fort St. James 20 were identified for a total of 65 resources. Two provincial resources and information and help lines were also identified. See Appendix C for a list of identified resources and the Resource Handbook for a more detailed description of the services provided by each resource. 78 Health Resources Health resources focused on physical, developmental, behavioral, and mental health aspects ofthe children with FAS/FAE. Based on the findings of Study One, children with F AS/F AE needed health resources that provided assessment, diagnosis and treatment of the following: F AS IF AE, developmental and speech delays, and problems with physical, behavioral, and mental health. Prince George Health Resources In Prince George, two pediatricians were available to assess, diagnose, and treat children with F AS/F AE. These two pediatricians also assessed, diagnosed, and treated accompanying physical, developmental, behavioral, and mental health disorders. For example these pediatricians diagnosed and treated children with ADHD or respiratory illnesses. Unfortunately availability of diagnosis ofFAS/FAE was still a concern as the pediatricians had wait lists that ranged from one to six months. Health resources which offered early intervention for children with developmental delays included the Child Development Centre (CDC), AIMHI, and the Infant Development Program (IDP). For example the CDC offered assessment, diagnosis and therapy for children with developmental delays which included occupational and physiotherapy. In Prince George, the services of psychologists were available through School District No. 57, Intersect, CDC, and also privately. These psychologists were able to provide an assessment of the child's cognitive and behavioral functioning and mental health. Wait lists for the services of psychologists vary and often depend on the services available at each school and the number of children who require services. Key informants indicated that psychological services are limited and typically children with 79 less severe problems may not receive services. One key informant also identified the need for the services of a developmental psychologist. The services of speech and language pathologists were available on a limited basis through CDC and the Northern Interior Health Unit. Fort St. James Health Resources Health resources included services provided by Fort Alcohol and Drug, the Necoslie Health Centre, Infant Development Program (IDP), the Fetal Alcohol Outreach Workers in Fort St. James and Vanderhoof, the Fort St. James Medical Clinic, and the Health Unit. Services from the IDP were part-time and the worker was shared between Fort St. James and Vanderhoof. Services from the Fetal Alcohol Outreach Worker were also part-time for a total of 12 hours per week. Services from a Speech and Language Pathologist were also available on a part-time basis for preschool and school aged children. Social Resources The majority of resources identified in Study Two were social resources. Most of the social resources focused on the behavioral and affective functioning of children with F AS/F AE and their caregivers. Resources that provided children with alternate living arrangements were also identified (i.e. MCF). Social resources provided (a) counseling, (b) support of the children and their families, (c) life skills for the children and their families, (d) parenting skills, (e) approaches for managing the children's behavior, (f) crisis intervention, (g) respite, (h) child care, (i) placement in foster homes or group homes, and (j) collaboration with and referral to other resources. " 80 Prince George Social Resources Social resources included the AIMHI Children's residence, the Central Interior Family Foundation, MCF, Project Parent North (PPN) and the Family Centre to name a few. MCF not only provided services directly to children and families, but also funded the majority of the other identified resources. These social resources provided services for children and their caregivers to improve the functioning of the entire family. Fort St. James Social Resources Social resources included services provided by the MCF, the Nechak:o Valley Community Services Society, Fort St. James Cares, the Fort St. James Youth Centre, and the Nak'azdli day care and after-school program. Educational Resources Educational resources focused on the cognitive and behavioral functioning of the child. Educational resources were available through the school districts and through a variety of private resources. Educational resources provided (a) schools that offered the BC curriculum, (b) assessment of learning difficulties and identification ofhow the child learned best, (c) development of individualized learning plans, (d) strategies to manage behavior issues, (e) alternate educational options, (f) learning assistance, (g) teachers' aides, and (h) one-on-one tutoring (e.g. in reading, writing and math). Psychologists were also available on a limited basis and provided an assessment of the child's cognitive and behavioral functioning. In addition, Psychologists were available to diagnose the intelligence or IQ level of children with F AS/F AE on a limited basis. 81 Prince George Educational Resources Resources included schools in School District No. 57, the Learning Difficulties Centre of Northern BC, a Tutor and F AS/F AE Trainer, the Aboriginal Headstart Program, the United Native Nations, and preschools at UNBC and the Family Y. The school district also offered a variety of alternate education programs for children and youth. Fort St. James Educational Resources Educational resources included services provided by School District No. 91, David Hoy School, Fort St. James Secondary School, the Nak'albun independent school, the Enterprise Centre, and the Nak'azdli Nursery School. Alternative educational programs were available through the school district, the schools and the Enterprise Centre. Resources with an Aboriginal Cultural Focus The majority of the children in Study One were of Aboriginal heritage, which indicated a need for culturally appropriate resources. There were several resources available in Prince George that provided health, social and educational services from an Aboriginal cultural focus. For example the Native Health Centre in Prince George provided health services for urban Aboriginal people. The Aboriginal Headstart Program offered Aboriginal children an opportunity to participate in a culturally based pre-school. The Apehtaw Kosisan Metis Child & Family Support Society provided individual and family counseling from a traditional Aboriginal cultural approach. The United Native Nations offered a variety of educational, social, and recreational services for Aboriginal 82 people. The Carrier Sekani Services and the Native Friendship Centre also provided a variety of resources for Aboriginal children and their families. Resources for Children with Secondary Disabilities Related to F AS IF AE Resources provided services for children with secondary disabilities such as mental health problems, disrupted school experiences, problems with parenting, trouble with the law, inappropriate sexual behaviors, and alcohol and drug abuse. These resources were provided by health, social and educational resources. For example resources located in Prince George that addressed secondary disabilities related to FAS/FAE included Youth Around Prince George, Youth Forensic Psychiatric Services, Youth Detox Stabilization Unit, Youth Probation Services, and the Youth Custody Centre. Resources Dedicated to the Needs of Children with F AS/F AE Only a few resources were dedicated to the needs of children with F AS/F AE in Prince George and Fort St. James. In Prince George a new FAS Family Resource Centre, through the assistance of the Northern Family Health Society, opened in March, 2001. This center provided education and support to families who have a child with F AS IF AE. Also under the auspices of the Northern Family Health Society, the Fetal Alcohol and Drug Effects Prevention program provided comprehensive services for pregnant women with substance misuse issues. Although the focus of this resource was on prevention, it was included as it was one of few resources that also focused on FAS/FAE. In Fort St. James services dedicated to children with FAS/FAE were limited to those provided by a part-time Fetal Alcohol Outreach Worker. Two resources that focused on FAS/FAE advocacy were the PG FAS Community Collaborative Network, and the Fort St. James 83 Fetal Alcohol Syndrome o ~ Both of these committees worked to increase awareness ofF AS IF AE and develop services for both prevention ofF AS IF AE and intervention with children with F AS/F AE and their caregivers. The Asante Centre for Fetal Alcohol Syndrome located in Maple Ridge BC is dedicated to the needs of children with F AS/F AE, however this centre was recently opened and children from the lower mainland are given priority for services. Study Two Discussion Study Two identifies health, social and educational resources that provide services for children with primary and secondary disabilities related to F AS/F AE. Resources that support the protective factors related to F AS/F AE were also identified. While prevention ofF AS/F AE is important, it is unlikely total prevention ofFAS/FAE will ever be achieved. There is a continuing need for resources and services for children with FAS/FAE. Adequacy of Services for Primary Disabilities Related to F AS/F AE According to Streissguth et al. (1997) primary disabilities are a reflection of the CNS dysfunctions inherent in the diagnosis ofFAS/F AE. As identified among the children in Study One, primary disabilities related to F AS/F AE included attention deficit and hyperactivity, physical problems, delayed development and speech, and learning disorders and mental retardation. Attention Deficit and Hyperactivity Children in Study One from both Prince George and Fort St. James have a clear need for services related to behavior problems. Approximately three-quarters of the children from both communities had a behavioral diagnosis of ADHD, either alone or in 84 combination with other disorders such as CD or ODD. The majority of children were referred to Dr. Hay for a behavioral problem. Resources through the school districts and community agencies in Prince George and Fort St. James provide services that attempt to address behavioral issues. In addition some children are on medication for problems with behavioral functioning, and some receive assistance with behavior management. According to a key informant, behavioral issues are difficult to deal with and can result in a breakdown of the child's living arrangements. Resources that provide services related to behavior management, parenting, and family counseling appear to be available to children and their families with F AS IF AE, however they may not be adequate based on the large number of placements experienced by many of the children from both Prince George and Fort St. James. Respite is available in both communities, but children with F AS/F AE may have difficulty qualifying for services. For example, children must have an IQ ofless than 70 to receive services from the AIMHI Children's Residence in Prince George. Children with F AS/F AE, regardless of the level of their IQ, are often difficult to parent and exert an inordinate demand on the coping abilities of their caregivers. The behavioral problems of these children can exhaust even the most skilled caregiver. If adequate respite care resources are not available to all caregivers of children with F AS/F AE, there is a possibility the living arrangements for the children may break down. Physical Problems Children in Study One from both Prince George and Fort St. James have a need for resources that provide services for children with physical problems. Available resources include two pediatricians in Prince George, a health clinic in Fort St. James, a health clinic at Necoslie, and family physicians in both communities. It appears the 65 Secondary Disabilities of Children with F AS/F AE According to Streissguth et al. "secondary disabilities are those that arise after birth and presumably could be ameliorated through better understanding and appropriate interventions" (1997, p.27). Common secondary disabilities include mental health problems, problems with parenting, trouble with the law, disrupted school experiences, inappropriate sexual behaviors, and alcohol and drug misuse. Study One profiled mental health problems of the children, parenting problems and identified one child who had trouble with the law. Study One had limited information regarding the experiences the children had with school disruptions, inappropriate sexual behaviors, and drug and alcohol misuse. Three secondary disabilities that are identified among the children in Study One are mental health problems, problems with parenting and trouble with the law. Many of the children have mental health diagnoses, family dysfunction and abuse and neglect concerns, and one child was in jail. Data regarding disrupted school experience is not available for the children in Study One, however children who have problems with behavioral and cognitive functioning likely have disrupted school experiences. Children with F AS/F AE require services that address secondary disabilities related to the diagnosis ofFAS/FAE. Mental Health Problems Study One identifies the majority of children with F AS/F AE in both Prince George and Fort St. James have mental health diagnoses. The percentages of children with mental health diagnoses and problems with affective functioning is similar among the children who reside in Prince George and Fort St. James. Family dysfunction, and 86 child is limited. Children in Fort St. James have the services of an IDP worker on a parttime basis. Although developmental services are more available than speech therapy, there are gaps in the amount of time available for each child requiring services. Key informants providing developmental, and speech and language services state they are spread thin. Learning Disorders and Mental Retardation In Prince George just under one third of the children in Study One have a diagnosis of a learning disorder or mental retardation. In Fort St. James just over half of the children have a diagnosis of a learning disorder or mental retardation. It is unclear why more children in Fort St. James have a cognitive diagnosis when compared to children who reside in Prince George. Possibly more children from Prince George have not yet been diagnosed. The diagnosis of mental retardation needs to be made by a psychologist, and although there are psychologists who practice in Prince George, there are none in private practice in Fort St. James. School District psychologists are available to children in both Prince George and Fort St. James, however they have limited time available to them for testing and diagnosis of children. Unfortunately, some resources require a diagnosis of mental retardation and require children to have an IQ of less than 70 before children can qualify for services. The limited access to the diagnostic services of a psychologist is an issue for children in both communities. It is unclear why children in Prince George who appear to have greater access to the services of psychologists have fewer cognitive diagnoses than children who resided in Fort St. James. In addition to diagnostic services, many children with F AS/F AE require modified and individualized education programs. Although modified and alternate education 87 programs are available in Prince George and Fort St. James, according to key informants the gap appears to be related to the difficulty in tailoring programs based on the specific needs of children with F AS/F AE. Adequacy of Services for Secondary Disabilities and Protective Factors Related to F AS/F AE Resources are also available to assist children and their families in dealing with secondary disabilities related to F AS IF AE. According to Streissguth et al. ( 1997) secondary disabilities occur after birth and possibly could be reduced or prevented through appropriate interventions. Common secondary disabilities related to F AS/F AE include (a) mental health problems, (b) problems with parenting, (c) disrupted school experience, (d) trouble with the law, (e) inappropriate sexual behavior, and (t) alcohol and drug problems. Mental Health Problems and Problems with Parenting Mental health problems are by far the most common of the secondary disabilities among the children of Study One. Half of the children in Study One suffer from problems with affective functioning and just over halfhave one or more mental health diagnoses. Clearly the children in Study One require services to assist them with mental health problems. Family dysfunction is the most common mental health diagnosis among children from both communities. Half of the children from Prince George and Fort St. James have problems with affective functioning. In addition a large percentage of the children had multiple placements through MCF. Streissguth et al. (1997) outlined eight universal protective factors that decrease the odds of a secondary disability occurring. One of the most powerful protective factors is living in a stable and nurturing home. 88 Since so many children from Prince George and Fort St. James have a diagnosis of family dysfunction, have problems with affective functioning, and have frequent changes of residence, obviously many of these children have problems with parenting and are not benefiting from a stable and nurturing home. Resources that support children and caregivers and improve the ability of caregivers to provide a stable and nurturing home are critical. Adequate resources for counseling, support, respite and information about F AS/F AE do not appear to be available in both Prince George and Fort St. James. With effective family intervention, children with F AS/F AE would experience stable and nurturing homes. It is unclear why these resources do appear to be successful in maintaining stable and nurturing homes for children with F AS/F AE. Possibly these particular children and their families did not utilize the available resources, or the resources were not able to effectively intervene with these children and their families. Early Diagnosis ofFAS/F AE Although access to health, social and educational resources in the north has long been problematic given the geographical expanse of the region, the issue becomes compounded when the availability of resources including diagnostic and intervention services are examined. For example the number of physicians who are able to diagnose children with F AS IF AE is relatively small. Most of those physicians with the ability to diagnose F AS/F AE practice at diagnostic centers in urban areas and have long wait lists. The two pediatricians identified in Study Two have wait lists ranging from one to six months for assessment of children where F AS/F AE is suspected. In addition, children from Fort St. James need to travel at least 100 km outside their home community to 89 obtain a diagnosis. Many of the children do not benefit from the protective factor of early diagnosis. Disrupted School Experience Although direct evidence of disrupted school experience such as number of school suspensions is not available, Study One includes information regarding the cognitive and behavioral functioning of the children, which is partly based on reports from teachers and parents regarding the educational experience of the children. Children who are identified as having problems with cognitive and behavioral functioning are likely to have some disruption of their school experience. Comments made by key informants who participated in Study Two indicate children with F AS/F AE often have disrupted school experiences. Study Two identifies resources available to children with F AS/F AE who have been expelled or suspended from school or who have dropped out. It appears alternate educational options are an important resource for children with F AS/F AE and are available in both Prince George and Fort St. James. It is unknown however how effective these alternate programs are in enabling children with F AS/F AE to obtain an education. Trouble with the Law Although only one child in Study One was in jail, comments made by Study Two key informants from resources such as the Youth Custody Centre and Youth Forensic Psychiatric Services indicate many of the children involved with these resources likely have F AS/F AE. Study Two identifies resources that work with children who are in trouble with the law. Alternative approaches to the typical court process are available in Prince George. The goal of these restorative justice programs is to balance the needs of 90 the offender and victim, and it is evident that the difficulty youth with F AS/F AE have with learning from consequences is taken into consideration. An important issue is the lack of a diagnosis ofFAS IF AE for some of the youth in trouble with the law, and often youth with F AS/F AE are not recognized as disabled. Sentencing may be inappropriate if the youth's difficulty with learning from consequences and difficulty using judgment is not recognized. Knowledge within the justice system regarding the impact ofF AS/F AE on the ability of youth to understand the consequences of their actions is critical. Inappropriate Sexual Behavior Although there was no information regarding the occurrence of inappropriate sexual behavior among the children in Study One, comments made by Study Two key informants from resources such as Youth Forensic Psychiatric Services and Apehtaw Kosisan Metis Child & Family Support Society indicate that some children with FAS/FAE from Prince George and Fort St. James are identified as having been involved in inappropriate sexual behavior. Study Two identifies resources that work with youth with problems related to inappropriate sexual behavior. Further research would assist in determining the needs of children with F AS/F AE who engage in inappropriate sexual behavior, but it appears some children with F AS/F AE require services regarding development of appropriate sexual behavior. Alcohol and Drug Problems Although there was no information regarding the occurrence of alcohol and drug problems among the children in Study One, key informants in Study Two from resources such as the Youth Detox Center indicate that some children with F AS/F AE from Prince George and Fort St. James are identified as having difficulty with alcohol and drug 91 misuse. Study Two identifies resources that provide services to youth with alcohol and drug problems. According to an alcohol and drug counselor from Fort St. James, one of the major challenges in providing services to youth with F AS/F AE and alcohol and drug problems is determining treatment approaches that are appropriate and that accommodate the abilities and deficits the youth experiences as a result ofFAS IF AE. Culturally Appropriate Resources F AS/F AE are not exclusively problems among one cultural group. However, in order for resources to be available, issues such as cultural sensitivity and culturally appropriate services need to be addressed. Although Aboriginal communities provide some resources for children with F AS/F AE and their caregivers, these resources need to be supported and further developed. Of the resources identified in Study Two, the majority provide services to children of all cultural backgrounds and do not provide culturally specific services. Limitations of Study Two Since the prevalence ofFAS/F AE is unknown in Prince George and Fort St. James, Study Two is unable to clearly identify whether available services are adequate for the numbers of children with F AS IF AE and their caregivers. A waiting list of longer than three months for a service suggests the available service is not adequate, however without tracking individual children and their caregivers it is difficult to quantify the adequacy of available resources. The children and caregivers in the Turpin et al. (1997) study population can not be tracked individually to determine if they are utilizing available health, social and educational resources. 92 Study Two identifies what health, social and educational resources are available to a particular population, the children with F AS/F AE and their caregivers who reside in Prince George and Fort St. James. Although how each resource can be accessed was identified, the accessibility of these resources for particular children and their caregivers can not be determined. For example, the cultural appropriateness of a resource may influence whether a particular child and caregiver utilize a resource. Although each resource was questioned regarding cultural sensitivity, it is not possible to determine the cultural appropriateness of all resources included in Study Two. Information regarding cultural appropriateness of resources is best obtained directly from children with F AS/F AE and their caregivers rather than the resources themselves and is beyond the scope ofthis study. The resource guide describing the health, social and educational resources identified in Study Two may not include every resource that provides services to children with FAS/FAE who reside in Prince George and Fort St. James. CONCLUSION Only a few health, social and educational resources are dedicated exclusively to the needs of children with F AS IF AE. Many of the resources identified in Study Two are not designed specifically for children with F AS/F AE but serve diverse groups of children. As identified in Study One, children with F AS/F AE often go undiagnosed and unrecognized until they are school age or older. F AS/F AE has been labeled the 'i_nvis1ble ' disability partly due to this lack of recognition. Children with F AS/F AE, the invisible disability, are forced to compete with other children who have diagnosed and readily visible disabilities. Children with F AS/F AE who are undiagnosed and have 93 difficulty with ADHD and behavior, may evenJ>e blamed for their inattention and their learning and behavioral difficulties. This pmb-lem of 'invisibility' i&.further exacerbated by the limited resources for obtaining a diagnosis, particularly in Fort St. James, where the nearest pediatricians are in Prince George and have waiting lists ranging from one to six months long. It appears, for many resources, children must be severely affected before they are even eligible for services. Finally, even if children are diagnosed with F AS/FAE, resources frequently have no programs that are specifically tailored to the individual needs of children with F AS/F AE. Intervention with children with F AS/F AE is ~ further complicated by the variations in effects prenatal exposure to alcohol has on each individual. Program modifications that may work with one child may not necessarily be effective with another child. Identifying health, social and educational resources for children with F AS IF AE is challenging. Very few resources focus on providing services for children with F AS/F AE and their caregivers. Based on a clear understanding of primary and secondary disabilities and protective factors related to F AS/F AE, key informants from many resources identified in Study Two had to be questioned specifically about whether they provided such services as therapy for developmental delays, respite or counseling that could be utilized by children with F AS IF AE. Often key informants had difficulty identifying services and some initially said no services for children with F AS/F AE were provided. It is unclear if this difficulty in identifying services is related to lack of recognition of the resource needs of children with F AS IF AE, or lack of knowledge about how to intervene with children with FAS/FAE. This may be another facet ofthe invisibility of children with F AS/F AE. For example, one key informant acknowledged 94 her expertise in drug and alcohol counseling, but also identified the challenges she faced in assisting youth with alcohol and drug problems who also had F AS/F AE. This key informant felt there needs to be more information regarding how interventions and programs can be adapted to meet the needs ofthose with FAS/FAE. The resource guide describing the health, social and educational resources identified in Study Two will be distributed through the Child Welfare Research Centre at UNBC. A feedback form asking users to provide information regarding the usefulness of the resource information is included in the guide. The feedback form also asks users to identify other resources that should be included in the guide. The resource guide will be updated regularly. Resources currently included in the resource guide will be contacted to update their information. Newly identified resources will also be added to the resource guide. The impact of prenatal exposure to alcohol has variable effects among children with FAS/FAE, and these children need a broad range ofhealth, social and educational resources. This broad range of needs requires an array of resources that are difficult to provide, particularly in small northern communities like Fort St. James. The largest gap in resources for children with F AS/F AE is a multidisciplinary resource centre that is dedicated to the needs of children with F AS/F AE. Advocacy for children with F AS/F AE and their caregivers plays a major part in increasing the recognition of the needs of children with F AS/F AE. Possibly, with a resource centre available for children with F AS/F AE in the north, these children will become visible. The need for resources that ameliorate the impact ofF AS/F AE and improve the lives of children and their caregivers is fundamental. 95 References Abel, E. L., & Sokol, R. J. (1987). Incidence of fetal alcohol syndrome and economic impact ofFAS-related anomalies. Drug and Alcohol Dependence, 19, 51-70. Abel, E. L. , & Sokol, R. J. (1991). A revised conservative estimate ofthe incidence ofFAS and its economic impact. 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Morbidity and Mortality Weekly Report, 46, 346-349. Clarren, S., & Astley, S. (1997). Development ofthe FAS diagnostic and prevention network in Washington state. In A. Streissguth & J. Kanter (Eds.), The challenge of fetal alcohol syndrome: Overcoming secondary disabilities (pp. 40-51 ). Seattle: University of Washington Press. Child Health Committee, Manitoba Medical Association. (1993). Report on the community consultation on fetal alcohol effects and fetal alcohol syndrome. Symposium sponsored by Manitoba Medical Association in cooperation with Alcoholism Foundation of Manitoba conducted at Winnipeg, Manitoba. Donovan, K. (1992). Executive Summary ofFoetal alcohol syndrome: A preventable tragedy. Fifth Report of the Standing Committee on Health and Welfare, Social Affairs, Seniors and the Status of Women. Ottawa: Queens Printer. Dorris, M . (1997). Introduction. In A. Streissguth & J. 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Foetal alcohol syndrome: A preventable tragedy. Fifth Report of the Standing Committee on Health and Welfare, Social Affairs, Seniors and the Status ofWomen. Ottawa: Queens Printer. Habbick, B., Nanson, J. , Snyder, R., Casey, R., & Schulman, A. (1996). Foetal alcohol syndrome in Saskatchewan: Unchanged incidence in a 20-year period. Canadian Journal ofPublic Health, 87, 204-207. Health and Welfare Canada. (1990). National alcohol and other drugs survey. Ottawa: Minister of Supply and Services Canada. Health and Welfare Canada. (1993). Executive Summarv fetal alcohol syndrome: From awareness to prevention. Ottawa: Health and Welfare, Social Affairs, Seniors and the Status ofWomen. Hinde, J. (1992). Early intervention for alcohol-affected children: Birth to age three. In J. Kleinfeld & S. Wescott (Eds.), Educating alcohol-affected children: Practical strategies Fairbanks, AK: University of Alaska. ./ Horowitz, S. (1984). Fetal alcohol effects in children: Cognitive, educational, and behavioral considerations. Unpublished dissertation, Columbia University. Isbell, R. , & Barber, W. (1993). Fetal alcohol syndrome and alcohol related birth defects: Implications and assurance for quality of life. BC Journal of Special Education, 11, 261-274. Kleinfeld, J. & Wescott, S. (Eds.). (1993). Fantastic Antoine succeeds! Experiences in educating children with fetal alcohol syndrome. Fairbanks, AK: University of Alaska Press. LaDue, R. , & Dunne, T. (1997). Legal issues and FAS. In A. Streissguth & J. Kanter (Eds.), The challenge of fetal alcohol syndrome: Overcoming secondary disabilities (pp. 146-161). Seattle: University of Washington Press. LaDue, R. , Streissguth, A. , & Randels, P. (1992). Clinical considerations pertaining to adolescents and adults with fetal alcohol syndrome. InT. Sonderegger (Ed.), Perinatal substance abuse (pp. 104-131 ). Baltimore: The John Hopkins University Press. _ 98 ~ Little, B., Snell, L. , Rosenfeld, C., Gilstrap, L., & Grant, N . (1990) Failure to recognize fetal alcohol syndrome in newborn infants. American Journal of Diseases of Children, 144, 1142-1146. MacDonald, M.A., and Associates, (1991). The prevention of fetal alcohol syndromes in British Columbia. Victoria, BC : Communication and Education Branch, BC Ministry of Health and Ministry Responsible for Seniors. ---- Malbin, D. (1991). Why bother to identify these kids? Identifying fetal alcohol syndrome and effects: Barriers and potentials. Unpublished Manuscript. Mattson, S. N. , & Riley, E. P. (1997). Neurobehavioral and neuroanatomical effects of heavy prenatal exposure to alcohol In A. Streissguth & J. Kanter (Eds.), The challenge of fetal alcohol syndrome: Overcoming secondary disabilities (pp.3-14). Seattle: University of Washington Press. ~ McKenzie, D. (Ed.). (1992). Aboriginal substance use: Research issues. Proceedings of a joint research advisory meeting: Canadian Centre on Substance Abuse and National Native Alcohol and Drug Abuse Program. Ottawa, ON: National Native Alcohol and Drug Abuse Programs, Tunney' s Pasture. McKenzie, D. (1996). Canadian profile 1996: Fetal alcohol syndrome. Retrieved May 13, 1996 from the World Wide Web: http://www.ccsa.ca/cp96fas.htm Ministry of Health. (2000). BC proposes national action on nurse, doctor supply. Retrieved April12, 2001 from the World Wide Web: http://www.hlth.go v.bc.ca/cpa/newsrel/2000/186.html Northern Family Health Society. (1997, September) Prince George communitybased F AS/E policy development proposal. Prince George, BC. Unpublished manuscript. Novick, N. (1997). FAS : Preventing and treating sexu!Yzdexiancy. In A. Streissguth & J. Kanter (Eds.), The challenge of fetal alcohol syndrome: Overcoming secondary disabilities (pp.162-170). Seattle: University of Washington Press. Robinson, G. , Conroy, J. , & Conroy, R. (1987). Clinical profile and prevalence of fetal alcohol syndrome in an isolated com.munity in British Columbia. Canadian Medical Association Journal, 137:-203-207. ~ 99 Rothon, D. A. (1998, September). Harm reduction: The female social context. Presentation for Women' s Committee, Ministry of Children and Families. Rutman, D., & Normand, C. (1996). Working with families affected by fetal alcohol syndrome/effects. Victoria, BC: University ofVictoria, Child, Family & Community Research Program. Schmidt, G., & Turpin, J. (1996). Towards a case management model with FAS/FAE children in northern and remote communities. In G. Schmidt & J. Turpin (Eds.), Fetal alcohol syndrome/fetal alcohol effects: A resource manual (pp. 52-60). Prince George, BC: Child Welfare Research Centre, University ofNorthern British Columbia. Smitherman, C. (1994). The lasting impact of fetal alcohol syndrome and fetal alcohol effect on children and adolescents. Journal ofPediatric Health Care, 8, 121-126. Sokol, R. J. (1988). Finding the risk drinker in your clinical practice. In G. C. Robinson & R. Armstrong (Eds.), The proceedings of a conference with particular reference to the prevention of alcohol-related birth defects (pp. 37-45). Vancouver, BC: Canada. Statistics Canada. (2000, June). Census 96 Statistical Profile: Prince George and Fort St. James. Retrieved June 30, 2000 for the World Wide Web: http://CEPS.statcan.ca/englishlprofil/Data Statistics Canada. (1993). Language, tradition, health, lifestyle and social issues: 1991 Aboriginal Peoples Survey. Ottawa: Statistics Canada. Cat. No. 89-533 . Streissguth, A. (1994a). Fetal alcohol syndrome: Understanding the problem; understanding the solution; what Indian communities can do. American Indian Culture and Research Journal 18, 45-83 . Streissguth, A. (1994b). A long-term perspective ofFAS. Alcohol Health and Research World, 18, 74-81. Streissguth, A. (1997a). Fetal alcohol syndrome: A guide for families and communities. Toronto: Paul Brookes Publishing Company. Streissguth, A. (1997b). Preface. In A. Streissguth & J. Kanter (Eds.), The challenge of fetal alcohol syndrome: Overcoming secondary disabilities (pp. xi-xviii). Seattle: University of Washington Press. Streissguth, A. , Barr, H. , Kogan, J., & Bookstein, F. (1996). Understanding the occurrence of secondary disabilities in clients with fetal alcohol syndrome (F AS) and fetal alcohol effects (F AE). Seattle: University of Washington Press. 100 Streissguth, A., Barr, H., Kogan, J., & Bookstein, F. (1997). In A. Streissguth & J. Kanter (Eds. ), The challenge of fetal alcohol syndrome: Overcoming secondary disabilities (pp. 25-39). Seattle: University of Washington Press. Streissguth, A. & Randels, S. (1988). Long term effects of fetal alcohol syndrome. In G. Robinson, & R. Armstrong (Eds.), Alcohol and child/family health (pp. 135-151). Vancouver, BC: BC FAS Resource Group. Thio-Watts, M. (1997, February) Report prepared for the FAS/NAS Community Network Meeting. Unpublished manuscript. Prince George, BC. Turpin, J. (1996). Fetal alcohol syndrome/Fetal alcohol effects: What do child ~ protection workers know? Unpublished master's thesis, University ofNorthem British Columbia, Prince George, British Columbia, Canada. Turpin, J., Ollech, S., & Hay, M. (1997) FAS/FAE: Children in one pediatrician's 1.1 practice. Unpublished manuscript. University ofNorthem British Columbia at Prince George. Wentz, T. ( 1997). A national survey of state directors of special education concerning students with FAS. In A. Streissguth & J. Kanter (Eds.), (1997). The challenge of fetal alcohol syndrome: Overcoming secondary disabilities (pp. 89-95). Seattle: University of Washington Press. 101 Appendix A Health Status Indicators 102 Health Status Indicators Prince George, Fort St. James, Richmond Health Status Indicators- 1991 - 1995 Prince George Fort St. James Richmond Rate* Rate* Number Number Number Rate* 6,331 17 443 24.15 8,589 Live Births 12.58 347 54.8 26 58.69 405 Low Birth Wt.* 47.15 432 68.2 81.26 520 Premature 36 60.54 64 Still Births 10 5 11.16 47 5.44 54 8.2 3 6.77 35 4.07 Infant Deaths *Rates are per 1,000 populatiOn, except those related to hve births and stillbirths which are per 1,000 total births. *Of the total live births in Fort St. James, 5.9% were low birth weight babies (<2,500 g.). *Ofthe total live births in Prince George, 5.5% were low birth weight babies (<2,500 g.). *Of the total live births in Richmond, 4.7% were low birth weight babies (<2,500 g.) Source: The BC Vital Statistics Agency, June 2000. 103 Appendix B Study One Variable List 104 Study One Variable List Current place of residence of the children Prince George Fort St. James Gender of the children Female Male Children's age at time of diagnosis- ages range from 3 months to sixteen years Cultural heritage of the children Aboriginal Caucasian Reason for referral to Dr. Hay Behavioral Developmental Physical problem Placement issue Other Developmental delay Speech delay Yes No Yes No Accompanying diagnoses: Mental health Family dysfunction Mood disorder Post-traumatic stress disorder/grief/loss Socially inappropriate Combination of 2, 3 or more None Unknown 105 Physical Cognitive Respiratory/Ear/nose/throat Head/eyes Heart Elimination problems Neuromuscular Combination of 2, 3 or more Other None Attention Deficit Disorder (ADD)/ learning disability Mental retardation Combination of 2, 3 or more No cognitive disorder or not diagnosed Behavioral ADHD Conduct disorder (CD) &/or oppositional defiance disorder (ODD) Sleep disorder Anger management Combinations of above None Functional rating -Neurological, Cognitive, Affective, Behavioral No problem Mild problem Moderate problem Severe problem Unknown Ministry of Children and Families involvement Yes No Has been involved in the past Current custody arrangements Family of origin- Birth parent(s) Extended family- e.g. grandparent(s), aunt, uncle Adopted Foster care/ group home Other- e.g. jail 106 Caregiver status One parent Two parents N/A in non-related foster care Number ofMCF placements One Two or three Four to seven Nine or ten Unknown Unknown but several Not applicable Purpose of medications prescribed for the children None Physical Behavioral Mental health Two or more purposes Caregiver resources Counseling/support group Education/literature Respite/home care services/parenting course Two or more No noted resources 107 Appendix C F AS IF AE Resource Guide 108 F AS/FAE Resource Handbook: A Guide to Information and Support Services in Prince George and Fort St. James for Children and Youth affected by Fetal Alcohol Syndrome or Fetal Alcohol Effects British Columbia 109 Sandra Ollech put together this handbook with help from Cindy Hardy, Glen Schmidt and Shereen Ismael. This handbook for people who want to know more about F AS IF AE resources for themselves or for someone they care about. This guide focuses on resources for children with F AS/F AE and their families . People from each resource supplied the information in this handbook. The information listed here does not replace advice from a doctor or other professional. The information may not be complete. This handbook may help you find some of the services you may want to use. This handbook may help you find answers to some of your questions. DEFINITIONS Some of the words used by people about Fetal Alcohol Syndrome and Fetal Alcohol Effects may be new to you. The following list explains some of the more common words. Fetal Alcohol Syndrome and Fetal Alcohol Effects (FAS/FAE) are problems that can happen to a child when the birth mother drinks alcohol when she is pregnant. Fetal Alcohol Syndrome (FAS) • The word Fetal Alcohol Syndrome (F AS) describes children who show the following signs: I. One or more growth delays: a) low birth weight, b) slowing weight gain over time, c) low weight when compared to height. II. Changes in the face that include: a) small eyes, b) the middle of the face is flat, c) thin upper lip, and d) no groove above the upper lip. III. One or more problems with the brain: a) small head size at birth b) brain abnormalities c) neurological signs such as poor fine or gross motor skills, hearing loss, or poor hand-eye coordination. IV. There must be a clear history of the birth mother drinking alcohol when she was pregnant. 110 Fetal Alcohol Effects (F AE) • Children with Fetal Alcohol Effects (FAE) do not have all the signs ofFAS . Children with F AE have problems with their brain and nervous system. There is also a clear history of the birth mother drinking alcohol when she was pregnant. Parents • Parents means birth parents, adoptive parents, foster parents or group homes. Resources • Resources deal with health, social and educational needs of children and youth with F AS IF AE. • Resources are agencies, groups or people who give services for children and youth with FAS/FAE. • Resources also give respite, support, counseling and education about F AS/F AE to parents. • Health resources include services given by pediatricians, psychologists and physiotherapists. • Social resources include services given by social workers, Ministry of Children and Families (MCF), counselors, daycares, and Youth Forensics • Educational resources include services given by teachers, teachers' aides, school districts and preschools. Books, journals, videos and internet web sites are seen as educational resources. 111 Evaluation Form Your feedback is important to make sure the resource guide is useful and current. Please answer the following questions after using this guide book and either fax or mail your response. Thank you for your help . 1. What did you find useful in this guide? 2. What did you find less useful in this guide? 3. How could this guide be improved? 4. Can you suggest other resources that should be included in this guide? Please return your feedback to: Fax to: (250) 960-5536 Attention: Sandra Ollech C/0 Child Welfare Research Centre University ofNorthem British Columbia Mail to: Attention: Sandra Ollech C/0 Child Welfare Research Centre University of Northern British Columbia 3333 University Way Prince George BC V2N 4Z9 112 Table of Contents Definitions 109 Evaluation Form 111 Prince George Resources 1. Aboriginal Headstart Program 2. AIMHI 3. AIMHI Children's Residence 4. Apehtaw Kosisan Metis Child & Family Support Society 5. Carrier Sekani Family Services 6. Central Interior Family Foundation 7. Central Interior Metis Women's Association 8. Child Development Centre 9. Family Centre . 10. Families Count Program 11. F AS Family Resource Center- Northern Family Health Society 12. Fetal Alcohol and Drug Effects Prevention Program 13. Healthiest Babies Possible Pregnancy Outreach Program 14. Infant Development Program 15. Intersect Youth and Family Services 16. Learning Difficulties Centre ofNorthern BC 17. Ministry of Children and Families - Child Protection 18. Ministry of Children and Families- Community Living Services 19. Moms and Kids Drop-in Centre 20. Native Friendship Centre 21 . Native Health Centre 22. Neuropsychologist- Dr. David Hallman 23. Paramed Home Health Care- Pediatric Respite Program 24. Parents Together - Intersect 25. Pediatrician Consultant - Dr. Marie Hay 26. Pediatrician - Dr. C. C. Patel 27. Phoenix Transition Society 28. Prince George Family Services 29. Prince George Family Y 30. Project Parent North 31. School District No. 57 32. Speech and Language Pathologist 33. Special Needs Adoptive Parents 34. Supported Child Care 35. Tutor and FAS/FAE Trainer- Carol Johnson 36. United Native Nations 37. University ofNorthern British Columbia Child Care 115 116 117 118 119 120 121 122 123 124 125 126 127 128 129 130 131 132 133 134 135 136 137 138 139 140 141 142 143 144 145 146 147 148 149 150 151 ( 113 38. Urban Aboriginal Justice Program 39. Worth Counseling and Assessment 40. Youth Accountability Program - Elizabeth Fry Society 41. Youth Around Prince George Resource Centre 42. Youth Custody Centre 43. Youth Detox Stabilization Unit 44. Youth Forensic Psychiatric Services- Youth Court Services 45. Youth Probation Services 152 153 154 155 156 157 158 159 Fort St. James Resources 1. David Hoy School 2. Enterprise Centre 3. Eugene Joseph School 4. Fetal Alcohol Outreach Worker- Fort St. JamesNechako Valley Community Service 5. Fetal Alcohol Outreach Worker- VanderhoofNechako Valley Community Services 6. Fort Alcohol and Drug 7. Fort St. James Cares 8. Fort St. James Medical Clinic 9. Fort St. James Secondary School 10. Fort St. James Youth Centre 11. Infant Development Program 12. Ministry of Children and Families- Child, Family and Community Services 13. Nak'albun School 14. Nak'azdli Daycare and After-school Care 15. Nak'azdli Nursery School 16. Nechako Valley Community Services Society 17. Necoslie Health Centre 18. Northern Interior Health Unit - Fort St. James 19. Speech and Language Pathologist 20. Yekooche Public Health Nurse 161 162 163 164 165 166 167 168 169 170 171 172 173 174 175 176 177 178 179 180 Provincial Resources 1. Asante Centre for Fetal Alcohol Syndrome 2. Children's & Women's Health Centre ofBC Sunny Hill Site 182 183 Advocacy and Education Resources 184 PG FAS Community Collaborative Network Fort St. James Fetal Alcohol Syndrome Committee Help & Information 184 114 Prince George Resources 115 Aboriginal Headstart Program Contact Person: Tina Fraser Location • 1945 3rct Ave. • Prince George, BC • Phone number: (250) 563-3884 • Fax number: (250) 563-2183 Mailing Address • 1945 3rct Ave . • Prince George BC • V2M 1G6 Referral Process Availability • Self referral or family member • Other parents • School principal, counselor, teacher • Child Development Centre • Infant Development Program • Healthiest Babies • Native Friendship Centre • Aboriginal Communities • Professionals: Nurse, social worker, • • • • Children must be registered for the program Wait list: 35 to 45 children each year Offered in the morning and afternoon A second program is being established psychologist Clientele • Aboriginal children and their families Age Limit • 3- 5 years Cultural Focus • For people with Aboriginal heritage Charge for the Service • No charge for clients Description of Services • • • • • • • • • • • Early intervention preschool Transportation to and from the preschool Culture and language e.g. foster the medicine wheel through intellectual, spiritual, emotional and physical development Support parents as the primary caregivers & include parents as a vital part of planning Develop individual family intake profiles that include the goals of the child & family Health promotion and nutrition Counseling and social support- individual and group Workshops Advocacy for children and families Refer families to financial support to ensure family has adequate financial resources Fund raising in order to provide school supplies for children going into kindergarten 116 AIM HI Contact Person: Carol Burbee Location Mailing Address • • • • • 500 Victoria St. • Prince George, BC • V2L 219 500 Victoria St. Prince George, BC Phone number: (250) 564-6408 Fax number: (250) 564-6801 Referral Process Availability • • • Ministry for Children and Families (MCF) Appointment required Wait list: For Children's Life Skills program Clientele Age Limit • • None for AIMHI • Age limits for specific programs Children, youth and adults with mental handicaps (IQ of less than 70) and their parents Cultural Focus Charge for the Service • • No charge for clients For people with any cultural heritage Description of Services • • • • • • Children's Life Skills program Street safety Money skills Social skills Family support Workers go into the home Guidance re parenting, discipline Children's Residence See pp 117 Residential homes For children in the care ofMCF Community support team Adult services: Life skills; respite for adults with mental handicaps; adult supported living homes & adult group homes 117 AIMHI Children's Residence J Contact Person: Cora Lee Kennedy Supervisor Location Mailing Address • 386 Green Place • Prince George, BC • Phone number: (250) 563-2260 • Fax number: (250) 563-5951 • 386 Green Place • Prince George, BC Referral Process • Self referral, family member, friend • Health professionals: Nurse, physician, social worker School principal, counselor, teacher • • Children need to qualify for the program Availability • Need to book one month in advance • Can book two days per week and one weekend per month • Only two weeks for vacation if during July and August • Wait list: Sometimes Clientele • Children and youth with special needs sensory, physical, or mental (IQ below 70) disabilities • Children and youth with FAS/FAE Age Limit • Birth to under 19 years Cultural Focus • For people with any cultural heritage Charge for the Service • Parents may pay a fee if on At Home Program • Depending on income may be charged a fee payable to MCF • • V2M6A2 May be no charge for clients Description of Services Major Role: • Respite for parents Additional Roles: • Beds available for family emergency (e.g. hospitalization of parent, bereavement) • Beds available for children waiting for placement in foster care • Behavior management • Advocate for children when having problems at school • Support for parents ( 118 Apehtaw Kosisan Metis Child & Family Support Society Contact Person: Earl Henderson Location Mailing Address • 730 2"ct Ave. • Prince George, BC • Phone number: (250) 564-5353 • Fax number: (250) 564-5352 • 730 2"ct Ave . • Prince George, BC • V2L 3A3 Referral Process Availability • • It is preferred that clients make an • • Self referral, family member Other clients tell people about the service Social worker can refer children, youth and families • appointment or they can drop-in No wait list Clientele Age Limit • Aboriginal, Metis children, youth and • • • families Open to non-Aboriginal people Short and long term clients 6 years and older Cultural Focus Charge for the Service • • No charge for clients For people with Metis, Aboriginal or non-Aboriginal cultural heritage Description of Services • • • • • • • . Advocate for children and families Aboriginal therapist Family Care worker Individual and family counseling from a traditional cultural approach Crisis intervention Encourage and support clients in coming up with their own solutions Assist in learning social skills and tools to become more independent 119 Carrier Sekani Family Services i Contact Person: Grace Duncan Location Mailing Address • • • • • • • 1112 6'h Ave. Prince George, BC Phone number: (250) 562-3591 Fax number: (250) 562-2272 Referral Process • Self-referral, families • Bands • MCF 1112 6th Ave. Prince George, BC V2L 3M6 Availability • Wait list: Yes • Phone before coming if : . j ,, , · ;; ; ' ': Clientele Age Limit • Children in contact with MCF at risk of • Children under 19 years abuse and/or neglect, and their families Cultural Focus • For people with Aboriginal cultural heritage c Charge for the Service • No charge for clients Description of Services Family Support Worker Program • Supply clients with information about their legal rights • Liaison between clients, social workers, lawyers, Bands, foster parents, school personnel, and other agencies • Provide support to clients during court proceedings and family conferences • Provide counseling for clients who are coping with personal difficulties which impede their ability to provide a healthy environment for their children • Provide information to clients on accessing services such as financial aid, parenting, legal services, education and employment services • Facilitate referrals to alcohol and drug treatment, psychological services, services for children with special needs, make referrals to foster parent program recruiter Home and Youth Support Program ~ Transport children to and from foster home and supervise visits between children and their families • Provide peer counseling for parents with children in care • Provide parenting lessons • Provide activity planning for children and families • Provide peer counseling for youth 120 Central Interior Family Foundation Contact Person: Nancy Alexander Program Coordinator Location Mailing Address • • • • • • • 110- 1552 South Lyons Street Prince George, BC Phone number: (250) 562-4417 Fax number: (250) 562-2243 110- 1552 South Lyons Street Prince George, BC V2N 1T2 Referral Process Availability • • Ministry for Children and Families refers children and youth to the program Wait list: Yes Clientele Age Limit • • Children and youth age 7 to 18 years who require a therapeutic foster home Up to 18 years Cultural Focus Charge for the Service • • For people with any cultural heritage No charge for clients Description of Services • • • • • • Provide long term placement in therapeutic foster homes for children who may have experienced many changes of residence and may have attachment problems Youth and family counselors work with the family and child Develop a plan with each child to address the social, emotional and behavioral needs ofthe child Develop programs based on the needs of the children e.g. art lessons, teaching social skills Collaborate with birth parents Collaborate with other agencies such as Intersect, Probation, the child's school 121 Central Interior Metis Women's Association Contact Person: Bev Tourand Coordinator Location Mailing Address • • • • • 730- 2"d Ave. • Prince George, BC • V2L 3A3 730 - 2nd Ave. Prince George, BC Phone number: (250) 564-5353 Fax number: (250) 564-5352 Referral Process Availability • • • Self referral, family member Other clients tell people about the service • • Clients can make an appointment or drop-in Home visits or meet in the office No wait list Clientele Age Limit • • Women and their families 20 years and up Cultural Focus Charge for the Service • For people with Metis or Aboriginal • No charge for clients cultural heritage Description of Services • • • • • • Crisis intervention support: Peer counseling, emotional support, advocacy Accompany to lawyer, court, Social services Support with court procedure and transportation Refer to other agencies, counseling, support groups, legal services, crisis line Provide information e.g. Metis/Aboriginal services available, dynamics of family violence, basic information on the justice system, safe houses Assist with basic essentials e.g. housing, food, clothing 122 Child Development Centre / Contact Person: Lana McQuarrie Location • 1687 Strathcona Ave. • Prince George, BC • Phone number: (250) 563-7168 • Fax number: (250) 563-8039 Mailing Address • 1687 Strathcona Ave. • Prince George BC • V2L4E7 Referral Process • Self referral or family member • Health professionals: Physician, nurse, social worker • Infant Development Program refers infants and children to the program Availability • Appointments required • Wait list: Yes for special needs daycare • Physiotherapy: No wait but may only consult initially • Occupational therapy (OT): May wait • Speech therapy: Consult done initially, therapy 1 year wait • No wait: Infants with feeding problems Clientele • Children and youth with developmental and speech delays, and their families Age Limit • Birth to Kindergarten entry for speech • Birth to 19 years for physio and OT • Day care & preschool: 18 months to 3 years & 3 to 5 years Cultural Focus • For people with any cultural heritage Charge for the Service • Nominal charge for therapy • Parent is charged a fee for preschool and daycare (may be able to be funded) Description of Services Major Roles • Assessment, diagnosis, and therapy of developmental delays • Physiotherapy • Occupational therapy • Speech Therapy • Consultation with parents - during home visits and therapy sessions Additional Roles • Preschool and daycare • Feeding consultations • Psychological assessment (limited) • Family resource library • Parenting programs from time to time 123 Family Centre Contact Person: Janice Butler Location • 21 05 Pine Street • Prince George, BC • Phone number: (250) 563-7976 • Fax number: (250) 563-4277 Mailing Address • 2105 Pine Street • Prince George, BC • V2L 2E1 Referral Process • Ministry for Children and Families • Intersect • Alcohol and Drug • PG Family Services Availability • Wait list: Yes • Appointment is required Clientele • Family focused Age Limit • Families must have children under age 12 years Cultural Focus • For people with any cultural heritage Charge for the Service • No charge for clients Description of Services • • • • • • • • • • • • Multiple service team work to tailor programs to the needs of each family Individual, couples, family and group therapy: Counseling with the focus on the family, child and youth skill building Family anger management group: FITNESS Play therapy and family play therapy (parent-child/family work, bonding and attachment work) Play and Grow group: Relationship building and age appropriate development Parenting: STEP, Early STEP, Elementary STEP, Next STEP, Mother Goose parenting programs Child and youth care work Drug and alcohol programs e.g. Relapse prevention group In home outreach services Provide transportation and day care Library reading program Partner with other agencies e.g. Carney Hill Community Development that offers a mother goose program and a parent support group 124 Families Count Program Contact Person: Helen Matson Location Mailing Address • 1444 Edmonton St. • Prince George, BC • Phone number: (250) 565-7348 • Fax number: (250) 565-6674 • • • Referral Process Availability • • • Public health nurse Any community agency e.g . Healthiest Babies Pathways program TMAP • • 1444 Edmonton St. Prince George BC V2M6W5 Public health nurse screening assessment is required Families are invited to participate in the program if they meet requirements Wait list: Yes for prenatal women after 8 months pregnant Clientele Age Limit • Families with a newborn up to age 3 • Families access the program when their • years who are at risk and meet requirements of screening by public health nurse Pregnant women who are at risk after 8 months pregnant • • infant is age birth to 3 months Families with an infant age birth to 3 years can remain in the program Pregnant women after 8 months pregnant Cultural Focus Charge for the Service • • For people with any cultural heritage No charge for clients Description of Services • Program promotes independence and empowerment of clients • Client visits: Lay visitors weekly, public health nurse visits as needed • Work with families to decrease stresses & help families learn and grow with their • • • • • baby Help with parenting skills e.g. learning baby's cues, feeding issues, play Developmental issues Budgeting Mother Goose Parenting Program Family support group 125 FAS Family Resource Center C/0 Northern Family Health Society V Contact Person: Bev Zorn Location • 2315 Spruce St. • Prince George, BC • Phone number: (250) 562-2123 • Fax number: (250) 562-5459 Mailing Address • 2315 Spruce St. • Prince George, BC • V2L2R9 Referral Process • Self referral Availability • No wait list Clientele • People with F AS/F AE, their families, and professionals Age Limit • None Cultural Focus • For people with any cultural heritage Charge for the Service • No charge for clients Description of Services • Resource library and computer access • Establish and maintain a Family Support Network that encourages independent support based on local and cultural needs • Provide assistance in advocacy and teach advocacy skills to caregivers of persons with F AS IF AE • Establish a northern network to provide families with accurate information and training to preserve family relationships. Identify understanding and care for individuals who are effected by prenatal alcohol exposure • In cooperation with the Prince George FAS Network, work with other mental health, disability and F AS/F AE coalitions for the benefit of all families raising individuals with FAS/FAE • Train parent educators to present the collective family experience to parents and professionals who provide services to individuals with F AS/F AE • Provide information on F AS/F AE e.g. research updates, educational strategies, justice related issues • Provide a Quarterly newsletter- issues of concern to families and professionals, provide information on support groups, projects, conferences and other activities • Provide assistance in F AS/F AE prevention programs to schools and other institutions • Enlighten and train professionals to identify, understand and develop appropriate services for individuals with F AS/F AE through direct systems training • Provide parent representation for committees, legislative hearings and research 126 Fetal Alcohol and Drug Effects Prevention Program Northern Family Health Society / Contact Person: Marlene Thio-Watts Location • lOlOB 41h Ave. • Prince George, BC • Phone number: (250) 561-2689 • Fax number: (250) 562-5459 Mailing Address • lOlOB 4th Ave. • Prince George, BC • V2L 3Jl Referral Process • Self referral • Professionals can refer clients Availability • No wait list Clientele • Pregnant women: At risk, low income • Support network: Partner, family, friends Age Limit • None Cultural Focus • For people with any cultural heritage Charge for the Service • No charge for clients Description of Services • • • • • • • • • • • Provide comprehensive services to pregnant women with substance misuse issues Identification, screening, and assessment of pregnant women at risk for use of alcohol and drugs Individual counseling, education and support to pregnant and parenting women with substance misuse issues using a harm reduction philosophy Community consultation, referral and follow-up e.g. alcohol and drug counseling Outreach prevention, safe houses, group homes and schools Community workshops and presentations to promote community awareness of Fetal Alcohol and drug effect and other related issues FAS/FAE advocacy I community development: Work together to eradicate Fetal alcohol and drug effects in our children, families and communities Screening tool for F AS : For youth or adults with FAS, or parent of child with FAS Resource library: Books, videos, journal articles Participate in F ASIFAE research Lobbying for change (policy, protocol) 127 Healthiest Babies Possible: Pregnancy Outreach Program Northern Family Health Society V Contact Person: Marlene Thio-Watts Location Mailing Address • • • • • • • 1010B 4th Ave. Prince George, BC Phone number: (250) 561-2689 Fax number: (250) 562-5459 1010B 4th Ave. Prince George, BC V2L 311 Referral Process Availability • • • Self referral, family member, friend Health professionals • • Drop-in: 8:30-4:30 Monday to Friday (closed from 12:00 to 1:00) Appointment preferred for initial intake No wait list Clientele Age Limit • • • Pregnant women: At risk, low income Support network: Partner, family, friends Cultural Focus • For people with any cultural heritage None Charge for the Service • No charge for clients Description of Services • • • • • • • Individual education and support provided on a drop-in basis on-site or through outreach Milk, food and vitamin supplements provided Canada Prenatal Nutrition program: Improves the quality, availability & consistency of nutrition directed services, provides additional food security programming Food for Two Cooking Club & community garden: Hands on learning experiences, promotes food security for pregnant and parenting moms, safe food handling & storage, cooking skills, shopping strategies, food distribution, sharing of meals Special Delivery Club/Postpartum: Client driven education support group, nutritious light meals are provided Transportation assistance (bus tokens) and child minding is provided Advocacy 128 Infant Development Program Contact Person: Shelly Showbridge Location • 500 Victoria St. • Prince George, BC • Phone number: (250) 564-6408 (extension 239) • Fax number: (250) 564-6801 Mailing Address • 500 Victoria St. • Prince George BC • V2L 2J9 Referral Process • Self referral or family • Health Professionals • Physician, nurse, psychologist, social worker • Child Development Centre • Healthiest Babies • Moms and Tots Program Availability • Wait list: Currently none, but can have a wait list • Wait list would be prioritized weekly • Frequency of home visits depends on degree of need and availability of staff Clientele • Infants and children at risk for, or with developmental delays, and their families Age Limit • Birth to 3 years Cultural Focus • For people with any cultural heritage Charge for the Service • No charge for clients Description of Services Major Roles • Identify child and family needs with a focus on infant development • Family support through home visits Additional Roles • Parent support group • Play time group • Referral to other services e.g. physiotherapy and occupational therapy, nutritionist, Supported Child Care program • Build communication and connections to the community • Advocate for children and families • Provincial program - child can easily transfer from one program to one in another BC community 129 Intersect Youth and Family Services V Contact Person: Intake worker Location Mailing Address • • • • • 1294 3n1 Ave. • Prince George, BC • V213E7 1294 3n1 Ave. Prince George, BC Phone number: (250) 562-6639 Fax number: (250) 562-4692 Referral Process Availability • Self referral or Family member • School principal, counselor, teacher • Health professionals: Psychologist, • Appointment preferred • Can accommodate drop-in occasionally • Wait list: Those with an acute problem • nurse, physician, social worker Probation officer • and risk to life will be seen immediately May have to wait 8 weeks to 3 months Clientele Age Limit • Children and youth with mental health • Birth to 18 years • ISSUeS Family when appropriate Cultural Focus Charge for the Service • For people with any cultural heritage • No charge for clients Description of Services • Counseling: Individual treatment plan is established Individual, group and family counseling • A variety of programs for youth e.g . School program for adolescents Youth Justice program (ages 12- 17 years) New Directions program for youth on probation 130 Learning Difficulties Centre of Northern BC I Contact Person: Janet McKeown Location Mailing Address • • • • • • • • 144 George St. Prince George, BC Phone number: (250) 564-8011 Fax number: (250) 564-8055 144 George St. Prince George, BC V2L 1P9 E-mail: ldc@paral)rnx.com Referral Process Availability • • • • Self referral or family member School principal, counselor, teacher • Appointment required Usually appointments are twice per week for 1 hour Wait list: Yes Clientele Age Limit • • • Children, youth and adults with learning disabilities, problems with language skills, literacy problems None- grade one to adults Usually grades 2 & 3 Cultural Focus Charge for the Service • • • For people with any cultural heritage Clients are charged a fee Some adults receive funding e.g. Worker's Compensation Board Description of Services Major Roles • Evaluate learning difficulties using a variety of tools • One to one multi-sensory tutoring from certified therapeutic tutors • Remediation in reading, writing, spelling, math and keyboarding Additional Roles • Tutor support groups • Parent support group • Workshops and training for parents, educators and tutoring professionals • Resource library 131 Ministry for Children and Families Child Protection Contact Person: Karen Strong-Boag Location Mailing Address • • • • • 1441 Ave. • Prince George, BC • V2L 3P3 1441 7th Ave. Prince George, BC Phone number: (250) 565-4300 Fax number: (250) 565-4216 7th Referral Process Availability • Calls from community members • Family • Help Line for Children • Health professionals: Nurse, physician • School principal/teacher/counselor • No wait list Clientele Age Limit • • Birth to age 18 Children and youth who are suspected ofbeing abused - Cultural Focus Charge for the Service • For people with any cultural heritage • • Will refer children to appropriate cultural resources Usually no charge for clients Description of Services • • • • • Investigate allegation of child abuse Assess risk of abuse in families Provide home support Provide foster homes for children if family is unable to make other care arrangements Provide group homes for teens Refer to community agencies e.g. Infant Development Program, Child Development Centre, Intersect, Carrier Sekani Family Services, Pine Street Family Centre, Prince George Family Services 132 Ministry for Children and Families Community Living Services Contact Person: Heather Aase Location Mailing Address • • • • • • • 207- 1600 15 1h Ave. Prince George, BC Phone number: (250) 565-6890 Fax number: (250) 565-4442 207- 1600 15th Ave. Prince George, BC V2L 3X3 Referral Process Availability • • • • • Parents request services for children Need an assessment from a psychologist to determine eligibility Phone in, drop-in or appointment Voluntary program Wait list: Yes for certain services e.g. life skills for children Clientele Age Limit • • • • • Children and youth need to meet criteria to qualify for services i.e. IQ of70 or below, Eligible for the At Home Program, or Diagnosis of autism For children's services: Birth to 19 years Cultural Focus Charge for the Service • • • For people of any cultural heritage No charge to clients for most services Some services are income tested Description of Services • • • • • • • Respite- with Respite Families, AIMHI Children's Residence Home makers Family Support Program- work with family to access community services, advocacy, teaching Life skills for children Infant Development Program Supported Child Care At Home Program - equipment and nursing respite for children with high health needs e.g. severe disability, dependent for activities of daily living 133 Moms and Kids Drop-in Centre Contact Person: Lil Darbyshire- Director Location • 1585 Strathcona (basement) • Prince George, BC • Phone number: (250) 562-5669 • Fax number: Not available Mailing Address • 1585 Strathcona • Prince George, BC • V2L4R9 Referral Process • Self-referral, family and friends • Professionals can suggest families attend: Ministry for Children and Families, physician, public health nurse • Other resources :Native Friendship Center, Project Parent North, Intersect, Child Development Centre Availability • Drop in • No wait list • Parents are expected to stay when the child is at the program • Hours: 9-12 AM and 1-4 PM • Lunch and transportation not provided Clientele • Parents and their children • Grandparents • Family workers Age Limit • Children are birth to 7 years Cultural Focus • For people with any cultural heritage Charge for the Service • 60$ per year if family can afford it • Families can give donations of supplies Description of Services The center helps build healthier families • The parent room provides: Referral services Educational parenting and social awareness programs A stimulating and non-judgmental atmosphere Peer support The Playroom provides: • The opportunity to develop social, physical and intellectual skills A supervised and safe learning environment Peer interaction Children' s programs 134 Native Friendship Centre Contact Person: Mary Clifford Location • 1600 3rd Ave. • Prince George, BC • Phone number: (250) 564-3568 • Fax number: (250) 563-0924 Mailing Address • 1600 3rd Ave. • Prince George, BC • V2L 3G6 • Website- www.pgnfc.com Referral Process • Self referral, family Availability • Wait list depends on program Clientele • Children, youth, families and adults Age Limit • Depends on the program Cultural Focus • For people with Aboriginal cultural heritage Charge for the Service • No charge for clients Description of Services • • • • • • • Camp Friendship - location for providing holistic programming in a rural setting in accordance with indigenous values Rainbow dancers - promote cultural awareness, dancers must be drug and alcohol free Sexually exploited youth outreach worker - assists youth in exiting the sex trade, provides therapeutic support, emergency housing funds, safe house, community education group and individual counseling using Aboriginal healing practices Reconnect- help youth on the street return to a healthy safe lifestyle, provide crisis intervention, street time presence, advocacy, recreation program and drop-in centre, cultural activities, refer to other agencies, outreach counseling Friendship House - shelter, one-on-one support, advocacy and life skills in a safe structured environment for high risk youth Melville House - shelter, one-on-one support, advocacy and life skills to sexually exploited youth who want to exit the sex trade ReStart - alternative to regular school for high risk Aboriginal youth 13-18, reintegrate and assist youths back into mainstream educational system, focus on Aboriginal culture, encourages youth to further their education 135 Native Health Centre Contact Person: Sheila Theissen Location Mailing Address • • • • • 1110 4th Ave. • Prince George, BC • V2L 3J3 1110 4th Ave. Prince George, BC Phone number: (250) 564-4422 Fax number: (250) 564-8900 Referral Process Availability • • Appointment preferred, drop-in • Wait list: Yes, for Doctors • • • • • • Self referral, family member Reserves Health Unit Drug and Alcohol Social worker Health professionals: Nurse, physician Other community resources Clientele Age Limit • • None Urban Aboriginal people Cultural Focus Charge for the Service • • • Aboriginal people Open to people with other cultural heritage No charge for clients Description of Services • • • • • Family practice: Medical diagnosis and treatment e.g. pregnant women, diabetes, drug and alcohol addiction, HIV and hepatitis C, depression Individual counseling Crisis intervention Traditional talking circle Refer to other community resources 136 Neuropsychologist Contact Person: Dr. David Hallman Location Dr. Hallman travels to Prince George and sees children and youth at: • Intersect (250) 562-6639 or • Child Development Centre (250) 563-7168 Mailing Address • • • • • • Box 154 Brentwood Bay, BC Prince George, BC · V8M 1R3 Phone number: 1 800 465-4144 Fax number: (250) 544-1636 Referral Process Availability Children and youth are referred through the following agencies: • Child Development Centre • Intersect • Youth Forensics • Ministry for Children and Families • • Clientele Age Limit • • • Children and youth with F AS Children, youth and adults • Appointment required Appointment made through referring agency Wait list: Yes if referred through Intersect None Cultural Focus Charge for the Service • • For people with any cultural heritage No charge for clients who are referred through the above agencies Description of Services • • • • • Broad comprehensive neuropsychological assessment e.g. strengths, weaknesses, vision, hearing, language, visual processing Diagnosis of mental deficits, learning disorders, behavioral disorders Able to identify if child displays characteristics consistent with diagnosis ofFAS Refers child to specialists depending on needs Findings provide help for therapists in planning appropriate therapy 137 Paramed Home Health Care - Pediatric Respite Program j Contact Person: Chris Wells Location Mailing Address • • • • • 207-556 North Nechako • Prince George BC • V2K lAl 207-556 North Nechako Prince George, BC Phone number: (250) 564-4442 Fax number: (250) 564-3636 Referral Process Availability • • Appointment required • No wait list • Can usually accommodate requests for • • Social worker through Ministry for Children and Families (MCF) Healthiest babies possible Self referral or family member (if hired privately) service Clientele Age Limit • • Birth to adolescence Children, youth and their family Cultural Focus Charge for the Service • For people with any cultural heritage • Staff have a variety of cultural • Usually no charge for clients referred backgrounds • byMCF Can be hired privately then client is charged Description of Services Major Roles • Home support - work with parents to care for children • Home support for youth with FAS who wanted to live independently • Home support for mother with FAS • Respite for parents • Advise parents regarding services Additional Roles • Child care training for staff including some information on FASIF AE • Aboriginal awareness workshop for staff 138 Parents Together Intersect Contact Person: Carmen Coltman Program Director Location Mailing Address • • • • • 1294 3rct Ave. • Prince George, BC 1294 3rd Ave. Prince George, BC Phone number: (250) 562-6639 Fax number: (250) 562-4692 • V2L 3E7 Referral Process Availability • Self referral, family member • Other• parents • School teacher/counselor • Intersect • RCMP • Clientele Age Limit • Parents with youth age 12 to 18 years • Cultural Focus Charge for the Service • For people with any cultural heritage • No charge for clients other than a and grandparents who are having difficulties dealing with children • Orientation every 6 weeks when new parents are invited to join the group No wait list Adults charge for the book Description of Services • • • • • • Through the Boys & Girls Club - a provincial program Structured self help parent group Small group work Develop strategies to deal with behavior of children Develop communication skills and ability to take on group roles Refer parents to other resources 139 Pediatrician Consultant- Dr. Marie Hay ) Location • 1668 Tamarack St. • Prince George, BC • Phone number: (250) 564-8999 • Fax number: (250) 564-8966 Mailing Address • 1668 Tamarack St. • Prince George, BC • V2L 2T3 Referral Process • Family practice physician • Psychiatrist • Social worker through MCF • Special Needs Team from schools • Child Development Centre • Intersect • Legal System - defense lawyer for youth with FAS IF AE Availability • Appointment is required • Wait list: For FAS/FAE- 6 months Clientele • Children and youth who require medical assessment, diagnosis and treatment • Parents are considered part of the health team and work with Dr. Hay to assist the children and youth Age Limit • Age limit: Up to 19 years of age less a day Cultural Focus • For people with any cultural heritage Charge for the Service • No charge for clients Description of Services Major Roles: • Assessment, diagnosis and treatment ofFASIF AE • Long-term follow up, look out for secondary morbidity, medications Additional Roles: • Advocate for civil and medical rights for the child • Prevention ofF ASIF AE through education of parents, teachers, health care providers • Write about FAS/FAE • Participate in FAS/FAE research 140 Pediatrician- Dr. C. C. Patel Location Mailing Address • Suite 210- 2155 lOth Ave. • Phoenix Medical Building • Prince George, BC • Phone number: (250) 564-1242 • Fax number: (250) 564-1264 • Suite 210- 2155 l0 Ave . • Prince George, BC Referral Process Availability • Family practice physician • Ministry for Children and Families, • Appointment required • Wait list: Yes approximately one month • social worker Psychiatrist 1 h • V2M 5J6 Clientele Age Limit • • Birth to 16 years Children and youth who require medical assessment, diagnosis and treatment Cultural Focus Charge for the Service • • No charge for clients For people with any cultural heritage Description of Services • • Assessment and diagnosis of children with F AS Long-term follow up, look out for secondary morbidity, monitor medications 141 Phoenix Transition Society I I Contact Person: Linda Lee Children's Support Worker Location • 1770 11 lh Ave. • Prince George, BC • Phone number: (250) 563-7305 • Fax number: (250) 563-2792 Mailing Address • 1770 11th Ave. • Prince George, BC • V2L 3S8 Referral Process • Self referral or Family member • Health professionals: Psychologist, nurse, physician, social worker • Police • School principal, counselor, teacher Availability • Drop in • Wait list: Sometimes Clientele • Women and children • Children must be accompanied by mother Age Limit • Women must be 17 years or older • Children must be 16 years or younger Cultural Focus • For people with any cultural heritage Charge for the Service • No charge for clients Description of Services Major Roles • Provide shelter for women and children in crisis • Para professional counseling and support for women and children, individuals, groups Additional Roles • Education of mothers about F AS IF AE • Work with mothers who have FAS/FAE • Play intervention with children • Program for children who witness violence • Parenting classes • Model effective parenting • Child care and transportation for women participating in Northern Women's Retreat 142 Prince George Family Services Contact Person: Loren Tudor Location Mailing Address • • • • • Suite 205 - 575 Quebec St. • Prince George, BC • V2L 1W6 Suite 205 - 575 Quebec St. Prince George, BC Phone number: (250) 564-3515 Fax number: (250) 564-0172 Referral Process Availability • • Through the Ministry for Children and Families • Wait list: Yes usually 2 or 3 weeks Appointment required - usually meet once per week with child or youth Clientele Age Limit • • Up to age 18 years • Age usually ranges from 8 to 14 years Children and youth at risk for being removed from their home or community due to behavior problems Cultural Focus Charge for the Service • • No charge for clients For people with any cultural heritage Description of Services • • • • • • • Provide parenting programs Work one-on-one with children on self-esteem, communication, anger management, conflict resolution Provide support for families Provide paraprofessional counseling Assist children in accessing community resources May refer families to other resources Services time limited- usually approximately one year 143 Prince George Family Y Contact Person: Dayna Long Location • 2020 Massey Dr. • Prince George, BC • Phone number: (250) 562-9341 • Fax number: (250) 564-2474 Mailing Address • Box 1808 • Prince George, BC • V2L4V7 Referral Process • Self referral, family member, other parents • Child Care Resource and Referral • Supported Child Care • Social worker • School principal, counselor, teacher • Ministry of Social Development and Economic Security (MSDES) Availability • Children must be registered and scheduled to attend • Occasionally registered children can drop-in • Wait list: 9-12 year old after school 1 child 6, 7, & 8 year old after school- 5 or 6 children for each of 2 programs Clientele • Typical children • Children with FAS/FAE and their siblings Age Limit • 18 months to 12 years, depending on the program Cultural Focus • For people with any cultural heritage Charge for the Service • User fees for each program • Determined by individual needs • May be eligible for childcare subsidized by Ministry for Social Development & Economic Security Description of Services Child Care: • After Kindercare- after kindergarten (11 :00 AM until6:00 PM) for age 5 years • After School-6:00PM. 2 programs for ages 6, 7, & 8; 1 program for ages 9-12 • Provide pick-up service from school to program • Provide care on days when school is not in session, PD days, Summer 7:45- 6:00 Pre-school: • Mon!Wed/Fri or Tues/Thurs for 2 Yz hours in AM or PM for ages 32 months to 5 years Toddler program: • Once a week for 1 hour for ages 18 to 32 months, Tuesday or Thursday PM Youth, Teen and Family programs 144 Project Parent North Contact Person: Cindy lgnas Location Mailing Address • 2025 Victoria St. • Prince George, BC • Phone number: (250) 562-9805 • Fax number: (250) 562-4694 • 2025 Victoria St. • Prince George BC • V2N2L2 Referral Process Availability • • • Must be registered for the program • Wait list: Yes, up to 1 year • Priority given to families with children • Self referral or family member Professionals: Social worker, physician, nurse Community agencies e.g. Infant Development Program, Child Development Centre, Carrier Sekani Family Services, Native Friendship Centre who are in care of Ministry for Children and Families; or families who have supervision orders Clientele Age Limit • • Birth to school age Children and their parents with parenting issues Cultural Focus Charge for the Service • • No charge for clients For people with any cultural heritage Description of Services • • • • • • • • • Teach positive parenting using a wide range of resources and teaching methods Role modeling of active parenting Work with family to set goals in parenting, life skills, home management Teach communication, nutrition, budgeting, how to deal with sibling issues Teach community awareness e.g. go on outings to low cost recreational events Home visits Transportation to and from Project Parent North Advocacy Speech therapy offered through Northern Interior Health Unit 145 School District No. 57 Contact Person: Carl Anserello Location - Administration Offices Mailing Address • • • • • • • 1894 9th Ave. Prince George, BC Phone number: (250) 561-6800 Fax number: (250) 561-6801 1894 4th Ave. Prince George BC V2M 1L7 Referral Process Availability • • • If parent and teacher have concerns, child is referred to school based team who implement a problem solving approach • Varies from school to school Depends on staff resources, number of children experiencing difficulty Children experiencing severe difficulties are given first priority Clientele Age Limit • • Children and youth experiencing difficulties with learning disorders or behavioral problems who attend school in District No. 57 School age Cultural Focus Charge for the Service • • For people with any cultural heritage No charge for clients Description of Services • • • • School District No. 57 uses a problem solving model: The process of identifying potential student learning and/or behavior problems, implementing an intervention plan, and evaluating the success of the plan The process begins with teacher/parent consultation and may access the expertise of other school based staff (school based team), which typically includes the school principal and learning assistance teacher Should the identified difficulties be more severe and resistant to school based interventions the school based team may make referral for assistance from district specialist staff including, school psychology, speech/language, counseling etc. A variety of alternate education programs are available for children and youth 146 Speech and Language Pathologist Contact Person: Jacqueline Dewhurst Location Mailing Address • 1444 Edmonton St. • Northern Interior Health Unit • Prince George, BC • Phone number: (250) 565-7374 • Fax number: (250) 565-7386 • 1444 Edmonton St. • Prince George, BC • V2M6W5 Referral Process Availability • Self referral, family • Professionals: Public health nurse, • Initial screening and consultation physicians, Infant Development program, Child Development Centre, preschools • • within 1 month of referral Wait list: 2 years for regular therapy Hearing impaired children have priority Clientele Age Limit • • Birth to school entry • 19 years and older Preschool children and adults with communication difficulties Cultural Focus Charge for the Service • • No charge for clients For people with any cultural heritage Description of Services • Assessment and speech and language therapy • Consultation with parents • Consultation with preschool and daycare teachers regarding strategies for language • Home program and monitoring of progress 147 Special Needs Adoptive Parents Contact Person: Mary Lee Location Mailing Address • • • • No mailing address available Prince George, BC Phone number: (250) 964-6299 Fax number: (250) 565-7377 Referral Process Availability • Self referral or family member Professionals can suggest parents call and can call themselves for information • Social worker • School principal, counselor, teacher • No wait list Clientele Age Limit • Adoptive parents of children with • None Cultural Focus Charge for the Service • For people with any cultural heritage • No charge for clients special needs Description of Services • Volunteer phone information service • Support to parents via the phone • Support and advocacy for children in school • Advise parents about other services • Resource library in Vancouver • Educational resources available regarding FASIFAE for parents, special needs teachers, school resource teams 148 Supported Child Care Contact Person: Sharon Beetlestone Location Mailing Address • 1668 Tamarak • Prince George, BC • Phone number: (250) 563-1147 • Fax number: (250) 563-9434 • Referral Process Availability • • • • • • Self referral, family member Child care providers Child Development Centre Infant Development Program Health professionals: Nurse, physician, social worker • • • • 1668 Tamarak Prince George, BC V2L 2T3 Children must meet the Ministry for Children and Families criteria for special needs and Special needs must be documented by a professional e.g. physician Wait list: Call early to get on waitlist, entry to programs is in September Clientele Age Limit • Children with special needs, children • Birth to 12 years Cultural Focus Charge for the Service • • No charge for clients with FAS/F AE, and their parents For people with any cultural heritage Description of Services • • • • • Support children in pre-school Support children in day care, child care, or out of school programs if parent working Individual program planning for children Summer program - support children in community day camps Provide services to Child Care programs: Strategies for inclusive environment, Child specific training workshops, Consultation, resource library (books, videos, toys) 149 Tutor and FAS/FAE Trainer Contact Person: Carol Johnson MEd Location Mailing Address • • • • • 2307 McBride Cres . • Prince George, BC • V2M 1Z8 2307 McBride Cres. Prince George, BC Phone number: (250) 563-6149 Fax number: (250) 562-0149 Referral Process Availability • Self-referral, family member • Parents can tell other parents about • • • • services Professionals can suggest parent calls School counselor, teacher FAS network • Appointment required - usually tutors each person 2-3 hours per week Wait list: Yes Clientele Age Limit • • Children usually 6 years old or older • Adults • • Children, youth and adults with learning disabilities and /or F AS/F AE Parents Teachers Cultural Focus Charge for the Service • For people with any cultural heritage • Parent is charged a fee for tutoring • Some presentations are done on a voluntary basis Description of Services Major Roles: • Tutors children with FAS and/or learning disabilities • Identifies learning disabilities and how children learn best • Provides information to families • Trains others through workshops, presentations, information sessions e.g. teachers, teaching assistants, parents Additional Roles: • Teaches continuing education course through College ofNew Caledonia • Tutors adults with literacy difficulties 150 United Native Nations Contact Person: Carla Wallis Location • Suite 201 - 1600 3rd Ave. • Prince George, BC • Phone number: (250) 562-6555 • Fax number: (250) 562-6552 Mailing Address • Box 1005 • Prince George, BC • V2N 4V1 Referral Process -• Self-referral Availability • Appointment required for membership processmg • Sponsorship is month to month on a first come first serve basis Clientele • Urban Aboriginal population Age Limit • None Cultural Focus • Aboriginal youth and adults • Includes cultural diversity e.g. Cree, Carrier, Inuit, Metis Charge for the Service • Five dollar membership fee • For full membership must have documented proof of Aboriginal ancestry • Non-Aboriginal people can become members Description of Services Educational Support Services • Tutor youth (suspended from school) to gain education and return to school • Provide after-school program including transportation and tutoring • Sponsor adults taking training programs or upgrading their education • Sponsorship for school supplies Recreational Services • Sponsor activities e.g. swimming, bowling, field trips, museum • Sponsor activities e.g. Y membership, dancing classes, Christmas hampers • Provide summer day camps for children in kindergarten to grade 12 • Minor hockey and fast ball tournaments for youth, golf tournament for charity Cultural Services • Provide opportunities for traditional, holistic Aboriginal practices such as visits from Elders, art, crafts, storytelling • Provide counseling from a traditional healing approach 151 University of Northern British Columbia Child Care Contact Person: Anne-Marie Prediger Location Mailing Address • • • • • • • 3333 University Way Prince George, BC Phone number: (250) 960-5720 Fax number: (250) 960-5507 3333 University Way Prince George, BC V2N 4Z9 Referral Process Availability • Self-referral, family member, friends • Other parents, co-workers • University community • Supported Child Care • Health professionals: Nurse or • • • Children must be registered by their parents for the program Wait list: Approximately 2 children for all programs physician would refer child to Supported Child Care Social worker Clientele Age Limit • • • Children with F AS/F AE and their siblings Typical children 18 months to 5 years Cultural Focus Charge for the Service • For people with any cultural heritage • Parent is charged a user fee Description of Services • UNBC Child care provides well rounded programs to foster physical, intellectual social and emotional growth • Child Care - 2 programs - 18 months to 3 years; 3 to 5 years • Pre-school - 3 - 5 year olds - morning and afternoon groups Tues/Thurs or Mon/Wed/Fri 152 Urban Aboriginal Justice Program Contact Person: Morgan Jamieson Location • 102- 1268 5th Ave. • Prince George, BC • Phone number: (250) 562-7928 • Fax number: (250) 562-7930 Mailing Address • 102- 1268 5th Ave. • Prince George, BC • V2L 3L2 Referral Process Youth must be referred through: • Crown Counsel • Police or Loss Prevention Officers can suggest diversion Availability • No wait list • Intake interview done to determine if youth would be well served by the program • Youth are invited to participate in resolution circle Clientele • Youth who have been charged with a first offense • Will occasionally take youth charged with second offenses Age Limit • 12 to 17 years Cultural Focus • For youth who identify themselves as Aboriginal • Aboriginal youth may also go to the Youth Accountability Program through the Elizabeth Fry Society Charge for the Service • No charge for clients Description of Services • Participation of youth in the program is voluntary • Restorative justice program for minor offenses e.g. shoplifting, breaking and entering • Youth, parents and support people for the youth participate in a resolution circle that is consistent with traditional Aboriginal beliefs. People from the community participate in the circle, as well as the victim and their support people if they choose • All information discussed within the circle is confidential and does not go beyond the circle • Recommendations for the youth are made through the process the youth participated in and the youth and their guardian sign a written contract • If youth do not complete the diversion agreement, they are referred back to the crown • Goal is to balance the needs of the victim and the offender 153 Worth Counseling and Assessment Contact Person: Dr. Michelle J. Worth, Ph.D. Registered Psychologist Location Mailing Address • • • • • • • 510- 1488 4th Ave. Prince George, BC Phone number: (250) 563-7331 Fax number: (250) 563-5105 510- 1488 4th Ave. Prince George, BC V2L 4Y2 Referral Process Availability • • • • • • School teacher/counselor Physicians MCF Parent Appointment required Wait list: Yes, up to 6 weeks for an appointment Clientele Age Limit • • • Children, youth and adults requiring assessment and/or counseling 8 years to adult for assessment Younger children for therapy Cultural Focus Charge for the Service • • For people with any cultural heritage Fee for service Description of Services • • • • • • Psychoeducational assessment Makes recommendations about capabilities, and educational programs and jobs that would be suitable Behavioral assessment and diagnosis ofbehavioral disorders e.g. ADHD Diagnosis of mental health disorders Measures intelligence and cognitive abilities Diagnosis of learning disorders 154 Youth Accountability Program - Elizabeth Fry Society Contact Person: Sandra Rossi Location Mailing Address • 101 - 2666 Queensway • Prince George, BC • Phone number: (250) 563-1113 • Fax number: (250) 563-8765 • 101 - 2666 Queensway • Prince George, BC • V2L 1N2 Referral Process Youth must be referred through: • Crown Counsel • Probation Office • Judges • Parents may request diversion through Crown Counsel Availability • • • • No wait list Appointment required Youth are seen within 7 to 14 days Youth are usually through the program in approximately 3 months Clientele Age Limit • • • Youth who have committed their first offense Will occasionally take youth with second offenses 12 to 17 years Cultural Focus Charge for the Service • For people with any cultural heritage • Aboriginal youth go to the Urban • No charge for clients Aboriginal Justice Program Description of Services • Restorative justice program for minor offenses e.g. shoplifting, breaking and entering, • • • and more serious offenses e.g. possession or assault Youth and parents participate in either: (a) a community panel process, (b) mediation between the victim and the offender, or (c) a meeting with the mediator, youth and parent Recommendations for the youth are made through the process the youth participated in and can include: Community service, payment for damages, research project, letter of apology Goal is to balance the needs of the victim and the offender 155 !th Around Prince George Resource Centre/ Burton Mailing Address • 1160 7 Ave . • Prince George, BC • V2L 5G6 1 h - • • ut:orge, l::SL Phone number: (250) 565-6215 Fax number: (250) 565-4209 ~ uuvc Referral Process Availability • • • • • Self referral, friends Ministry for Children and Families Probation Officers Schools Clientele • • Drop-in No wait list currently Can be a wait list for some programs Age Limit • 13 to 29 years • Youth at risk • Youth with FASIF AE and their siblings • Majority are 16 to 20 years Cultural Focus Charge for the Service • • No charge for clients For people with any cultural heritage Description of Services • • • • • • • Drop in centre with recreational activities Group, individual, and peer counseling drug & alcohol, mental health issues Street Spirits Theater Company teaches basic acting skills focuses on social issues about the life problems of youth Welcoming program for youth in foster care advocacy, support, and social activities, liaison with foster parents association Life Works Day Program drug and alcohol treatment Future Cents employment readiness - hires youth Alternate educational programs Gateways and afternoon school program 156 Youth Custody Centre ( Contact Person: Cheryl Boyle Nursing Supervisor Location • 1211 Gunn Road • Prince George, BC • Phone number: (250) 562-5393 • Fax number: (250) 565-6930 Mailing Address • Service Bag 10,000 • Prince George, BC • V2N 4P2 Referral Process • Youth are sentenced to the Youth Custody Centre through the court system Availability • A resource for youth in BC • Most secure youth facility in BC Clientele • Youth with FAS/FAE • Typical youth Age Limit • 12-18 years Cultural Focus • For people with any cultural heritage • Will provide some culturally specific services e.g. sweat lodge for Aboriginal youth Charge for the Service • No charge for clients Description of Services • • • • • • • • • • • • • • Secure and safe environment for youth in custody Secure facility with both closed and open custody units Bowron House - open custody, community service and access Hazelton Lodge - contracted First Nations program Counseling - individual and group Educational services - Individual educational plan, assessment, remedial education, special needs Health services from physician & nurses- diagnose, counsel & treat health problems Mental health care - psychologist Pastoral care Drug and alcohol services Recreation and hobbies programs Young women's program Aboriginal services program Referral to community programs when released 157 Youth Detox Stabilization Unit Contact Person: Dave Steindl Location Mailing Address • • Prince George Regional Hospital • 2000, 15th Ave. • Prince George BC • V2M 1S2 • • • • Prince George Regional Hospital 2000, 15th Ave. Prince George, BC Phone number: (250) 565-2881 Fax number: (250) 565-2883 Referral Process Availability • • • • • • Self referral or family member School principal, counselor, teacher Health professionals: Nurse, physician, social worker Aboriginal communities Appointment required Wait list: Sometimes, usually no longer than 2 weeks Clientele Age Limit • • Usually 13 to 18 years Youth from BC, preference to youth from northern communities Cultural Focus Charge for the Service • For people with any cultural heritage • No charge for clients Description of Services • • • • • Services centre around use of alcohol or drugs Counseling - focuses on individual, some group work Educational groups Recreational activities e.g. swimming, skating, wall climbing Referral to resources prior to discharge e.g. alcohol and drug counseling 158 Youth Forensic Psychiatric Services Youth Court Services Contact Person: Barb Burrows Location Mailing Address • • • • • • • Referral Process Availability • Probation officer • Appointment required • No wait list Clientele Age Limit • Young offenders including those from • Cultural Focus Charge for the Service • For people with any cultural heritage • No charge for clients 1594 71h Ave. Prince George, BC Phone number: (250) 565-7115 Fax number: (250) 565-7119 Note: Additional clinic in Vanderhoof Prince George and Fort St. James 1594 7th Ave . Prince George BC V2L 3P4 12 to 18 years Description of Services • Sexual offenders groups • Anger management group • • • • • Counseling - individual Drug and alcohol treatment Psychometric assessment - diagnosis and recommendations for treatment Assessment of fitness to stand trial Establishment of individual educational plans in consultation with schools 159 Youth Probation Services Contact Person: Bob Moore Location Mailing Address • • • • • • • 1040 3n1 Ave. Prince George, BC Phone number: (250) 614-2660 Fax number: (250) 614-2659 1040 3rd Ave. Prince George, BC V2L 5S2 Referral Process Availability • • • Youth are charged with criminal offense and on probation May see youth before court to determine if alternate measures are appropriate No wait list Clientele Age Limit • • Youth who have committed a criminal offense 12 to 17 years Cultural Focus Charge for the Service • • • For people with any cultural heritage Contracts with reserves to provide Aboriginal services No charge for clients Description of Services • • • • • • Risk assessment is done with each youth Provide reports and recommendations for sentencing Followup and supervision of youth on probation Work with the schools and other agencies Core programs: Substance abuse, youth violence intervention May refer youth to PG Aboriginal justice society or the Elizabeth Fry youth accountability program to avoid dealing with offense through the court system 160 Fort St. James Resources 161 David Hoy School Contact Person: Claire McKaie Learning Resource Teacher Location Mailing Address • David Hoy School • Fort St. James, BC • Phone number: (250) 996-823 7 • Fax number: (250) 996-8729 • • • • Referral Process Availability • • If parent and teacher have concerns, an educational assessment is done David Hoy School Box 880 Fort St. James, BC VOJ lPO Children experiencing severe difficulties are given priority Clientele Age Limit • • Kindergarten to grade seven Children experiencing difficulties with learning disorders or behavioral problems who attend David Hoy School Cultural Focus Charge for the Service • For people with any cultural heritage • No charge for clients Description of Services • Teachers are informed and educated regarding FAS/FAE through literature, • • • • • • • workshops Learning resource teacher Learning assistance One on one with teachers' aides when available Student learning and/or behavioral problems are identified and assessed May adapt the learning environment of the student Strategies and approaches are planned and implemented with the teacher Should the identified difficulties be more severe, a referral may be made for assistance from district specialist staff including school psychology, speech/language, counseling etc. when available 162 Enterprise Centre Contact Person: Monica Grill Location Mailing Address • • PO Box 2050 • Fort St. James, BC • VOJ 1PO • • • 250 Stuart Drive E Fort St. James, BC Phone number: (250) 996-8228 Fax number: (250) 996-7973 Referral Process Availability • • • • Self referral Teacher/School counselor • Students need to apply to attend Wait list: Yes, length ofwait depends on the school population Students can attend full or part-time Clientele Age Limit • Youth who are prepared to work at a • Cultural Focus Charge for the Service • For people with any cultural heritage • No charge for clients grade 10 level or higher and enrolled at Fort St. James Secondary School - 15 to 20 years Description of Services • • • • • • • • Offers the BC school curriculum Provide educational assessments Offer English, Math, Socials, Science and elective courses Can adjust courses to the skills of the student Students graduate with a "Dogwood" Students must pass provincial exams to graduate with a "Dogwood" Students usually attend for two years, but can stay for 3 years Any student attending Fort St. James High School can take a course at the Centre if they can not get a particular course at the high school 163 Eugene Joseph School Contact Person: Manu Madhok Location Mailing Address • • • • • • • Tachie Reserve Fort St. James, BC Phone number: (250) 648-3231 Fax number: (250) 648-3251 Bag 60 Fort St. James, BC VOJ 1PO Referral Process Availability • • Teachers and families identify children who are having difficulty with academic and or behavioral performance Children are helped as soon as possible with resources available in the school Clientele Age Limit • • Children attending Eugene Joseph school Kindergarten to grade 7 Cultural Focus Charge for the Service • • For people with any cultural heritage No charge for clients Description of Services • • • • • • • Establish individualized education plans- goals are modified to encourage academic success Try to involve both teachers and parents in working with the children Project Charlie: Curriculum for social skills, self esteem, communication, friendship Provide one on one intervention for children who need time out from class Provide strategies for teachers for working effectively with children with F ASIF AE Psychologist available through school district 91 for educational testing Referral to other resources e.g. Nechako Valley Community Services 164 Fetal Alcohol Outreach Worker- Fort St. James/ Nechako Valley Community Services \1' Contact Person: Lori den Engelsen Location • 349 Stuart Drive W • Fort St. James, BC • Phone number: (250) 996-7645 • Fax number: (250) 996-7647 Mailing Address • Box 1146 • Fort St. James, BC • VOJ lPO Referral Process • Self referral, family member, legal guardian • School principal, counselor, teacher • Professionals: Social worker, nurse, physician Anyone can come for information and • support Availability • Appointment preferred • Drop-in on Mondays and Wednesdays • No wait list Clientele • Children, youth, adults and families dealing with FAS IF AE Age Limit • Birth to 6 years (mandated through Community Action Program for children) • Children, youth and adults (birth to 6 years have priority) Cultural Focus • For people with any cultural heritage Charge for the Service • No charge for clients Description of Services • FASIF AE Education: Prevention ofF AS/F AE Community presentations Presentations to schools - elementary and high school Training for foster parents • • Resource for school counselors/educators, professionals, probation, RCMP, other agencies Connect clients with other resources • • Consultation • Assist with development of life skills 165 Fetal Alcohol Outreach Worker- Vanderhoof/ Nechako Valley Community Services V Contact Person: Sherry Wright Location Mailing Address • • • • • • • 157 West Victoria St. Vanderhoof, BC Phone number: (250) 567-9205 Fax number: (250) 567-3939 Box 1249 Vanderhoof, BC VOJ 3AO Referral Process Availability • Self referral, family member, friend • Social worker • School principal, counselor, teacher • Probation officer • Appointments and drop-in • Wait list: Yes Clientele Age Limit • • Birth to 6 years but will work with Children, youth, adults and families dealing with FAS/FAE . older children Cultural Focus Charge for the Service • For people with any cultural heritage • Tailors workshops for specific cultural • No charge for clients groups Description of Services • • • • • • • Provide information and education about FAS/F AE e.g. increase awareness of FAS/FAE Provide FAS/F AE workshops e.g. for physicians, nurses, police, workers for Ministry for Children and Families, Aboriginal community Suggest strategies that may be effective for working with children with FAS/F AE to parents, teachers Provide support to parents Presentations to children in schools Advocate to de-stigmatize FAS/F AE Assessment of children who may have FAS/F AE then refers children to pediatrician for diagnosis 166 Fort Alcohol and Drug Contact Person: Louise Evans-Salt Location Mailing Address • • • • • • • 160 Stuart Dr. Fort St. James, BC Phone number: (250) 996-8411 Fax number: (250) 996-8307 160 Stuart Dr. Fort St. James, BC VOJ 1PO Referral Process Availability • • • • • • • Self referral or family, or friends Health professionals: Nurse, physician, social worker School principal, counselor, teacher Probation officer Police Wait list: Sometimes Teens and Pregnant women are seen the same day Clientele Age Limit • • Youth or adults with issues with drug and or alcohol misuse 13 years to adults Cultural Focus Charge for the Service • • For people with any cultural heritage No charge for clients Description of Services Major Roles • Planning and treatment of alcohol and drug misuse • Counseling individual, group, couples, families • Educational groups • Long term support and commitment to clients • Assessment and referral to residential treatment Additional Roles • Aware ofthe need for treatment ofthose with FAS/FAE and attempts to address it 167 Fort St. James Cares Contact Person: Angie Prince Location Mailing Address • 122 Stuart Drive • Fort St. James, BC • Phone number: (250) 996-7810 • Fax number: (250) 996-7443 • • • Referral Process Availability • • No wait list • Can usually accommodate requests • Appointment • Social worker through Ministry for Children and Families (MCF) Self referral or family member (ifhired privately) 122 Stuart Drive Fort St. James, BC VOJ 1PO Clientele Age Limit • • Birth to 13 years Children, youth and their family Cultural Focus Charge for the Service • • No charge for clients if referred by For people with any cultural heritage • MCF Can be hired privately then the client is charged Description of Services Major Roles • An individual service plan is developed • Home support - work with parents to care for children e.g. parenting skills, budgeting • Respite for parents • Advise parents regarding services Additional Roles • Training for staff including information on FASIF AE, ADHD 168 Fort St. James Medical Clinic Contact Person: Clinic Receptionist Location Mailing Address • • • • • • • 270 Stuart Drive E Fort St. James, BC Phone number: (250) 996-8291 Fax number: (250) 996-8212 PO Box 1149 Fort St. James, BC VOJ 1PO Referral Process Availability • • • Self-referral Appointment required Takes 1 to 3 days to get an appointment Clientele Age Limit • • People who require medical services None Cultural Focus Charge for the Service • • For people with any cultural heritage • No charge for clients with medical coverage Clients with no medical coverage pay an office fee Description of Services • • • Assessment, diagnosis and treatment of people with medical problems Long-term follow-up e.g. monitoring medications Referral to other resources e.g. pediatrician 169 Fort St. James Secondary School Contact person: Naomi Stainton Counselor Location Mailing Address • • • • • • • 450 Douglas Ave. Fort St. James, BC Phone number: (250) 996-7126 Fax number: (250) 996-7708 Box 307 Fort St. James, BC VOJ 1PO Referral Process Availability • • • For learning assistance: Through School Based Team For 'special education': Formal testing is done through school, planning meeting with special education teacher, other teachers and agencies involved with student and parents • Wait list: Yes depending on the program Services depend on the degree of difficulty experienced by the youth Clientele Age Limit • • Youth experiencing difficulties with learning disorders or behavioral problems who are in high school 13 to 19 or 20 years Cultural Focus Charge for the Service • • For people with any cultural heritage No charge for clients Description of Services • • • • • • Youth with mild to moderate difficulties are usually in the regular classroom with learning assistance and/or adaptations Youth with moderate to severe difficulties have an individual educational plan established through interdisciplinary meetings Youth may have classroom adaptations, work with the learning assistance teacher, a modified educational program, or partial withdrawal from classes An alternate grade 9/10 program is available to allow students to work individually, self -paced in Math, Science, Social Studies and English Home school coordinators are available Formal testing is available through the district psychologist 170 Fort St. James Youth Centre Contact Person: Barrit Christianson Location Mailing Address • • • • • • • 374 Maurice Ave Fort St. James, BC Phone number: (250)996-7166 (Centre) Fax number: (250) 996-7970 Box 1879 Fort St. James, BC VOJ 1PO Referral Process Availability • • • • Self referral School teacher/counselor Drop in Open 3:30 to 10:00 PM Thursday & Friday; 6:00 to 10:00 PM Saturday Clientele Age Limit • • Youth 12 to 19 years Cultural Focus Charge for the Service • • For people with any cultural heritage No charge for clients Description of Services • • • • Recreational activities e.g. pool table Foos Ball table Air Hockey TV and VCR- free videos Nintendo 64 game Games e.g. chess, board games, cards Crafts Dinner: Thursday free sit down dinner. Friday supper costs $1.00 Provide support to youth Boxing occassionally 171 Infant Development Program Contact Person: Marci Whitford Location Mailing Address • Phone number: Fort St. James (250) 996-7178 Vanderhoof (250) 567-3126 • Fax number: (250) 996-2216 • • • Referral Process Availability • • • • Self referral, family, or friend Health professionals: Physicians, Medical Clinic, public health nurse, Hospitals e.g. PGRH, BC Children's • Box 1309 Vanderhoof, BC VOJ 3AO No wait list Available one day per week in Fort St. James Appointment required Clientele Age Limit • • Infants and children with developmental delays and their families Birth to 3 years Cultural Focus Charge for the Service • • For people with any cultural heritage No charge for clients Description of Services • Home based program - Infant Development Program worker visits the child and • Work with infants and children with physical, mental or emotional developmental delays Suggest ways parents can stimulate child e.g. play ideas, things the family can do as part of every day living Referral to other services e.g. speech and language pathologist Family advocate • • • family in their home 172 Ministry for Children and Families- Fort St. James Child Family & Community Services Contact Person: Ann Norman or Cathie Summer Location • 250 Stuart St. E • Fort St. James, BC • Phone number: (250) 996-7148 • Fax number: (250) 996-7957 Mailing Address • Box 1300 • Fort St. James, BC • VOJ lPO • E-mail: norman@fsjames.com cathiesummer@gems#4.gov.bc.ca Referral Process • Self referral, family member, friend • Health professionals: Nurse, physician • School principal, counselor, teacher • Help Line for Children • Aboriginal Communities • Youth Centre Availability • Drop in • No wait list Clientele • Children, youth and families in crisis Age Limit • Birth to 19 years Cultural Focus • For people with any cultural heritage Charge for the Service • No charge for clients Description of Services • Child protection e.g. voluntary and involuntary care agreements • Counseling e.g. individual • Work with families to change lifestyle for safety and well being of children • Advocate for parents and children to get information and resources • Provide educational resources e.g. F AS Guide for Daily Living • Custody of children at risk e.g. guardianship, continuing care • Support family and child to plan child's return to parents • Teach skills to those working with children with F AS • Refer children to resources in Fort St. James e.g. drug and alcohol, Infant Development Program • Refer children to resources in other communities e.g. Prince George, Vanderhoof • Transport children for services e.g. speech therapy, pediatrician • Some foster children may be moved to Prince George for improved access to services 173 Nak'albun School Contact Person: Paul Landry Location Mailing Address • Lakeshore Dr. • Fort St. James, BC • Phone number: (250) 996-8441 • Fax number: (250) 996-2229 • Box 1390 • Fort St. James, BC • VOJ lPO Referral Process Availability • • If parent and teacher have concerns, an educational assessment is done Children experiencing severe difficulties are given priority Clientele Age Limit • • Kindergarten to grade 7 Children experiencing difficulties with learning disorders or behavioral problems who attend the school Cultural Focus Charge for the Service • • No charge for clients For people with any cultural heritage Description of Services • • • • • • • Teachers are informed and educated regarding FAS/F AE through literature, workshops Learning Resource teacher Learning Assistance One on one with teachers' aides when available Student learning and/or behavioral problems are identified and assessed May adapt the learning environment of the student Strategies and approaches are planned and implemented with the teacher 174 Nak'azdli Daycare and After-school Care Contact Person: Rose Sam Location Mailing Address • Nak'azdli Reserve • Fort St. James, BC • Phone number: (250) 996-7001 • Fax number: (250) 996-8010 • • Box 1329 • Fort St. James, BC • VOJ 1PO Referral Process Availability • Family member • Wait list: Yes • Children must be registered • No drop-in available Clientele Age Limit • • Depending on the program: Children requiring day care or afterschool care on a full-time or part-time basis Birth to 3 years 3 - 5 years Elementary school age Cultural Focus Charge for the Service • • Parents are charged a fee • Some children are subsidized For children with any cultural heritage Description of Services • • • • Infant program for children birth to 3 years Preschooler program for children 3 to 5 years After-school program for children attending elementary school Provide activities, crafts, snacks 175 Nak'azdli Nursery School Contact Person: Tracey Sam Location Mailing Address • Necoslie Reserve • Fort St. James, BC • Phone number: (250) 996-7686 • Box 1329 Referral Process Availability • Family member • Must be registered for the program • No wait list • Children from Necoslie have priority • Will then take other Aboriginal • Fax number: (250) 996-8010 • • Fort St. James, BC VOJ ITO children Clientele Age Limit • • 4 years old Preschool children Cultural Focus Charge for the Service • For people with Aboriginal cultural • No charge for clients heritage Description of Services • • • • Educational program to prepare children for kindergarten Morning class from 9:00 to 11 :00 AM Afternoon class from 1:00 to 3:00PM Activities include Circle time Book time Project time Children bring their own snack Operate 7 months of the year with the summer off 176 Nechako Valley Community Services Society Contact Person: Helen Frederick Location Mailing Address • • • • • • • 250 Stuart Drive Fort St. James, BC Phone number: (250) 996-7645 Fax number: (250) 996-7647 Box 1140 Fort St. James, BC VOJ lPO Referral Process Availability • • • For referral to Special Services to Children program • Ministry for Children and Families For referral to other programs: • Schools • Other professionals • Self referral • • • • Wait list: Yes depending on the program No wait list for mental health services Wait list for other services may be 2 weeks to 3 or 4 months Appointment generally required Mental health does have some drop-in Clientele Age Limit • • • Children, youth, and families Usually 4 years to adults Children are typically school age Cultural Focus Charge for the Service • • For people with any cultural heritage No charge for clients Description of Services • • • • • Non-profit society Special Services to Children - work with children who are at risk for apprehension or who have recently been apprehended, and help reunite children and their families Child Resource and Family Services - work with youth and families on issues e.g. conflict resolution, parenting, behavior, self-esteem, grief and loss Mental health - work with children, youth, couples and families e.g. assessment, consultation with other professionals, referral to other agencies Children who witness violence - work with children exposed to violence, generally domestic abuse 177 Necoslie Health Centre Contact Person: June Moise Health Director Location Mailing Address • Necoslie Reserve • Fort St. James, BC • Phone number: (250) 996-7400 • Fax number: (250) 996-2262 • PO Box 1238 • Fort St. James, BC • VOJ lPO Referral Process Availability • Self referral • Health professionals e.g. physician, • No wait list • Appointment preferred, but can drop-in • nurse Social worker Clientele Age Limit • • Birth to Elders Children, youth, adults and families Cultural Focus Charge for the Service • For on reserve First Nations people • No charge for clients • Open to people with other cultural heritage Description of Services • • • • • • • • • • • • Prenatal nutrition, community kitchen, parenting programs Prenatal classes In home workshops In home community kitchen Travel clerk - provides assistance for people who need services Mental health worker Brighter Futures Worker Women's support groups Recreational activites Developing community home care: Respite, home support, palliative care, meals Supply information and education regarding F AS/F AE Refer people to Fetal Alcohol worker Lori den Engelsen 178 Northern Interior Health Unit Fort St. James Contact Person: Pat Short Location • # 121 250 Stuart Drive • Fort St. James, BC • Phone number: (250) 996-7178 • Fax number: (250) 996-2216 Mailing Address • PO Box 1268 • Fort St. James, BC • VOJ 1PO • e-mail pshort@nirhb.bc.ca Referral Process Availability • • • • Self-referral - anyone can seek services Contact mothers after birth of baby Professionals - Infant Development Program, social workers, physicians • People can drop in or make an appointment No wait list Clientele Age Limit • • Children, youth, parents and adults None Cultural Focus Charge for the Service • • For people with any cultural heritage No charge for clients Description of Services • • • • • • • • • • • • Maternal, child and family care Family planning Counseling about normal child development, guidance about discipline and safety Help parents help child develop normally through skill building Nutritional counseling Prenatal classes and individual prenatal counseling with high risk mothers Rhyme time songs and stories for children and parents - drop in Visit schools weekly - work with school, children and parents with behavior problems Parent advocate Immunization Referral to other agencies, liaise with other community resources Health promotion initiatives 179 Speech and Language Pathologist / Contact Person: Terri Shea Location Mailing Address • Sowchea Elementary School • Fort St. James, BC • Phone number: (250) 996-7439 • Fax number: (250) 996-7860 • Sowchea Elementary School • Box 189 • Fort St. James, BC • VOJ 1PO Referral Process Availability • • • • • • • Self referral, family Professionals: Teachers, public health nurse Parent signs a form requesting services Appointment is required 2 year wait list for treatment 1 day per week for preschoolers 1 day per week for school age children Clientele Age Limit • • Preschool: Birth to 5 years • School age: Kindergarten to grade 12 • Younger children are given priority Children with speech and language delays and disorders Cultural Focus Charge for the Service • For people with any cultural heritage • No charge for clients Description of Services • • Assessment and therapy for children with speech and language delays and disorders Consultation with families, teachers 180 Yekooche Public Health Nurse Contact Person: Jan Tatlock Supervisor Location • Y ekooche Reserve • Fort St. James, BC • No phone in clinic. Can leave message at Band office (250) 648-3267 Carrier Sekani office in Vanderhoof: • Phone number: (250) 567-2900 Fax number: (250) 567-2975 Mailing Address • Yekooche Band Office • PO Box 1420 • Fort St. James, BC • VOJ lPO Referral Process • Self referral - anyone can seek services • Contact mothers after birth of baby when back in community Availability • No wait list • Drop-in • Clinic is open 3 days a week • Can leave a message for the nurse at the Vanderhoof office Clientele • Children, youth, parents and adults Age Limit • Birth through to elders Cultural Focus Charge for the Service • For people with any cultural heritage • No charge for clients Description of Services • Community Health Rep available 5 days per week • Public Health Nurse available 3 days per week • Physician is available once per month • Immunization, communicable diseases • Monitoring chronic diseases e.g. diabetic initiative with elders involved in teaching traditional nutrition Traditional medicines offered • • Maternal child care • Community kitchen • Elder health program • Sexually transmitted diseases and HIV testing • Women's wellness e.g. pap smears • Home visits, home care e.g. wound care, dressing changes 18 1 BC Provincial Resources 182 The Asante Centre for Fetal Alcohol SyndromV Contact person: Audrey Salahub Location • 22326A Mcintosh Ave • Maple Ridge, BC • Phone number: (604) 467-7101 • Fax number: (604) 467-7102 Mailing Address • 22326A Mcintosh Ave • Maple Ridge, BC • V2X 3C1 • Website: www.asantecentre.org Referral Process • Self-referral, families • Professionals - physicians, nurses, teachers Availability • Wait list: Yes approximately one month • Three phase screening process: Initial referral identifies if client may have F AS IF AE. Client is then sent information form. Once information is received by the centre it is presented to the pediatrician who decides if client would benefit from the centre's services Clientele • Children, youth and adults who are affected by prenatal drugs and alcohol e.g. FAS/FAE Age Limit • Birth to adult Cultural Focus • For people with any cultural heritage Charge for the Service • Some children and youth may be subsidized • Charge for service depends on level of assessment that is done • Adults are charged a fee for the service Description of Services • Diagnostic and assessment services, based on a multidisciplinary team approach • Coordinated care plans focused on working in partnerships with families and recognizing the value of the experience in understanding and planning their child's or adult's future • Support services before, during and after diagnosis • Onsite training, consultation and observation for professionals and paraprofessionals • Community networking 183 Children's & Women's Health Centre of By Sunny Hill Site V Contact person: Team Leader: Substance Exposure Resource Team Location Mailing Address • 3644 Slocan Street • Vancouver, BC • Phone number: (604) 453-8300 • Fax number: (604) 453-8301 • Referral Process Availability • Must be referred by a pediatrician • • • preferably Will take referrals from family physicians in communities without a pediatrician • • 3644 Slocan Street Vancouver, BC V5M3E8 Waiting period varies depending on the age of the child and circumstances School age children must have psychoeducational assessment done before being seen at Sunny Hill Clientele Age Limit • • Birth to 19 years • Children and youth with F AS/F AE and other prenatal exposure to drugs Parents included in diagnostic process Cultural Focus Charge for the Service • For people with any cultural heritage • No charge for clients Description of Services • See children for diagnostic purposes • Multidisciplinary cognitive and behavioral assessment • Short-term follow-up -discuss recommendations and support development of plan • Educational consultation with schools where appropriate • Refer and link to community resources • Provide information to other community resources • Education and advocacy • Outreach services when resources are available and a need is identified 184 Advocacy and Education Resources ~ PG FAS Community Collaborative Network Contact person: Marlene Thio-Watts Phone: (250) 561-2689 Fort St. James Fetal Alcohol Syndrome Committee Contact person: Joanne Alexander, Public Health Nurse Phone: (250) 996-7178 Major Roles • Advisory committee for the Fetal Alcohol Syndrome Worker • Community needs assessment was completed by the F AS Worker that identified knowledge gaps • Identified the need for a support group for families • Identified the difficulty in recognizing who has F AS and who to provide services for • Need more hours for the FAS Worker to increase work in awareness and prevention ofF AS Help and Information BC Child Youth & Family Advocate 1-800-476-3933 BC Help Line for Children 310-1234 BC Parents in Crisis 1-800-665-6880 Crisis Line (24 hour) & Community Resource Directory (250) 563-1214 Infant Help Line (24 Hour) (250) 563-2328 Parent Help Line 1-888-603-9100 185 National FAS/FAE Information Service (Toll Free) 1-800-559-4514 www.ccsa.ca/fasgen.htm Contact Person: Karen Palmer / Northern Family Health Society www.fas-pg.org About FAS/E newsletter. FAS/E Support Network ofBC Surrey, BC (can be contacted at 14326 Currie Drive, Surrey BC V3R 8A4) Brighter Futures. 1999. Alcohol-related birth defects. Davis, D. 1992. Reaching out: A handbook for parents, teachers and others who live and work with children affected by F AS and F AE. Davis, D. 1994. Reaching Out to children with FAS/E: A handbook for counsellors and parents who work with children affected by fetal alcohol syndrome and fetal alcohol effects. Doris, M. 1989. The broken cord. Dubenski, N. 1997. Fetal alcohol syndrome: Community Action Program for Children, Health Canada. Five booklets Durant, L., & Pullan Watkins, K. 1996. Working with children and families affected by substance abuse. A guide for early childhood education and human service staff. FASNET assessment tools, a layman's guide to fetal alcohol syndrome and fetal alcohol effects. Developed by the FAS/E Support Network, 14326 Currie Drive, Surrey BC V3R8A4 Kleinfield, J., & Wenscott S. eds. 1993. Fantastic Antone succeeds: Experiences in educating children with fetal alcohol syndrome. Malin, D. 1993. Fetal alcohol syndrome fetal alcohol effects, strategies for professionals. Schmidt, G., & Turpin, J. eds. 1996. Fetal alcohol syndrome/fetal alcohol effects: A resource manual. Turpin, J., & Schmidt, G. eds. 1999. Fetal alcohol syndrome/effects: Developing a community response. Resources can usually be obtained at libraries, bookstores, and the UNBC bookstore. 186 Appendix D Information Sheet 187 Information Sheet Researcher's Name Sandra Ollech Address 11055 Jutland Road, Prince George, BC, V2N 4Y8 Phone# (250) 964-2712 e-mail ollech@bcgroup.net Phone# (250) 960-5814 Supervisor's Name Dr. Cindy Hardy Title ofProject: Health, Social and Educational Resources for Children with FAS/FAE and their Caregivers in Two Northern BC Communities Type ofProject Thesis Completion date Sept. 1, 2001 Expected start date Sept. 1, 2000 Potential benefits and risks: The goal of my research is to assist children with FAS/FAE, their caregivers, and service providers in locating appropriate services to promote quality of life and prevent development of secondary disabilities by developing a resource guide. The information you provide will contribute to a thorough description of the health, social and educational resources available to children with FAS/F AE and their caregivers. This information will further contribute to appropriate referral mechanisms used by service providers working with these children and caregivers residing in Prince George and Fort St. James, and will identify gaps in services that need to be addressed. Each participant will be provided with a copy of the resource guide and a summary of my thesis findings where identified gaps in resources will be discussed. There are no identifiable risks to the participants. How you were chosen: The resources of primary interest in this study are health, social and educational resources that provide services to children with FAS/F AE and their caregivers who currently reside in Prince George and Fort St. James. Resources will include those that have been identified through the work of the FAS Community Collaborative Network. Resources Ministry for Children and Families, Carrier Sekani Family Services and an FAS worker in Fort St. James. What you will be asked to do: You will be asked to respond to a telephone interview for about 15-20 minutes. Questions will focus on the following aspects of each resource: 1) how clients gain access to the resource; 2) a description of the clients; 3) what services are provided. Who will have access to your information: Sandra Ollech (researcher), Dr. Cindy Hardy (thesis advisor). The information you provide will be included in a resource guide. 188 Voluntary nature of your participation: You have the right to withdraw from the study at any time. You will be asked to give verbal consent via telephone prior to the telephone interview. A copy of this consent form will be provided to you on your request. Remuneration: There is no remuneration for your participation Confidentiality: No information identifying individual clients using your resource will be used. Your name will be kept confidential upon your request. You rriay decide whether or not you wish to provide a contact name for your resource. Information regarding the services provided by each of the FAS/F AE resources will be compiled and a resource guide for children, caregivers and service providers will be provided to each of the respondents participating in the study. A summary of the thesis findings will also be provided. If any questions arise or for more information contact: Sandra Ollech, (250) 964-2712 or e-mail ollech@bcgroup.net Any complaints about the project should be directed to: the Office of Research and Graduate Studies, UNBC, 960-5820 189 Appendix E Informed Consent Form 190 Informed Consent Form 1. Have you received and read a copy of the Information Sheet? Yes No 2. Do you understand that you have been asked to be in a research study? Yes No 3. Do you understand the investigator will be making notes of your responses during the telephone interview? Yes No 4. Do you understand the benefits involved in participating in this study? Yes No 5. Have you had an opportunity to ask questions and discuss this study? Yes No 6. Do you understand that you are free to refuse to participate or withdraw from the study at any time? You do not have to give a reason. Yes No Yes No service providers will be developed from the information you provide? Yes No 7. Do you understand who will have access to the information you provide? 8. Do you understand a resource guide for children, their caregivers and 9. Do you agree to allow the information you provide to be included in a resource guide? The study was explained to me be Yes Sandra Ollech I agree to take part in this study Name of Research Participant Date I believe that the person responding to this telephone consent understands what is involved in the study and voluntarily agrees to participate. Signature of Investigator Date No 191 Appendix F Resource Questionnaire 192 Resource Questionnaire To be identified prior to telephone interviews Name of the Resource: Location and Mailing Address: Street and Number City/Town Province (British Columbia) Postal Code Phone number Fax number e-mail Telephone interview questions Gaining Access to the Resource 1. Do clients need a referral (e.g. physician) or can clients self-refer? 2. Do clients need an appointment or is the resource drop-in? 3. Is the service specific for a certain cultural group? 4. Is there a wait list for the service? If so how long is the wait list? 5. Is there a client charge for the service? 6. If there is no client charge for the service how is the service funded? Clientele of the Resource. Does this resource provide services to: 1. children with FAS/F AE? 2. parents I caregivers of children with FAS/F AE? 3. siblings of children with FAS IF AE 4. Is there an age limit for clientele? 193 Services offered by the Resource (Check-list) Psychologist: Psychological testing Diagnosis ofFAS/FAE Treatment ofFAS/F AE Physician: Diagnosis ofFAS/FAE Treatment ofFAS IF AE Developmental Support: Speech Therapy: Physio Therapy: Occupational Therapy: Infant Development Orthodontia Opthamology Otology Audiology Counseling: Individual therapy Family therapy Support Groups: Meeting Times Location Educational services: Educational assessment Special needs teachers Remedial education Programs: Headstart Project Parent North Child care Other: Do you agree to allow the information you have provided to be included in a resource guide? 194 Appendix G Resource Template 195 Resource Template Name of the Resource Contact Person: Location and Mailing Address: Street and Number City/Town Province (British Columbia) Postal Code Phone number Fax number e-mail Gaining Access to the Resource Referral Process: Professional: Nurse Psychologist Social Worker Physician School Principal, Teacher, Counselor Self-referral Family member Appointment Required/ Drop-In Wait list Service for a specific cultural group Funding for Service Client is Charged Other Clientele of the Resource Children with F AS/F AE Caregivers of children with F AS/F AE Siblings of children with F AS/F AE Age 196 Description of Services Offered Psychologist: Psychological testing Diagnosis ofFAS/FAE Treatment ofFAS/FAE Physician: Diagnosis ofFAS/FAE Treatment ofFAS/FAE Developmental Support: Speech Therapy: Physio Therapy: Occupational Therapy: Infant Development Orthodontia Opthamology Otology Counseling: Individual therapy Family therapy Support Groups: Meeting Times Location Educational services: Educational assessment Special needs teachers Remedial education Programs: Heads tart Project Parent North Child care Other: Do you agree to allow the information you have provided to be included in a resource guide?