A Tri-Province Initiative to Expand Understanding of Costs, Services &

Prevention of a Public Health Issue: Fetal Alcohol Spectrum Disorder &

Children/Youth In Care [2010-2014]:

Study on the Prevalence of FASD in Canadian

Child Welfare Settings: FINAL REPORT

Study Authors:

Don Fuchs, PhD and Linda Burnside, PhD. University of Manitoba

Date:

March 2014

Funded by the Public Health Agency of Canada

Project #: 6789-15-2010/10871004

TABLE OF CONTENTS

INTRODUCTION ................................................................................................................................. 1

OVERVIEW OF THE PROJECT ............................................................................................................... 2

LITERATURE REVIEW .......................................................................................................................... 3

Estimating Prevalence of FASD ................................................................................................................ 4

FASD and Child Welfare ........................................................................................................................... 6

DIAGNOSIS OF FASD IN CANADA ....................................................................................................... 7

Alberta ....................................................................................................................................................... 8

Manitoba .................................................................................................................................................. 8

Ontario ..................................................................................................................................................... 8

TRI-PROVINCE FASD PREVALENCE STUDY METHODOLOGY ................................................................. 9

Alberta .................................................................................................................................................... 12

Manitoba ................................................................................................................................................ 13

Ontario ................................................................................................................................................... 14

FINDINGS ........................................................................................................................................ 15

Alberta ..................................................................................................................................................... 15

Manitoba ................................................................................................................................................ 17

Ontario ................................................................................................................................................... 20

DISCUSSION .................................................................................................................................... 22

RECOMMENDATIONS ...................................................................................................................... 23

REFERENCES .................................................................................................................................... 26

APPENDICES .................................................................................................................................... 32

Appendix A: Alberta Sample Letter to Social Workers .......................................................................... 34

Appendix B: Manitoba Sample Letter to Social Workers ...................................................................... 36

Appendix C: Manitoba Child in Care FASD Information Profile Data Collection Form .......................... 39

Appendix D: Ontario Sample Letter to Children’s Aid Society Agencies ................................................ 40

Appendix E: Ontario Sample FASD AAR Data Collection Form ............................................................. 43

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TRI-PROVINCE FASD PREVALENCE PROJECT: FINAL REPORT INTRODUCTION

Increasingly, prenatal alcohol exposure is acknowledged as a leading cause of preventable developmental disabilities that have serious detrimental outcomes for individuals throughout the lifespan (Health Canada, 2000). Fetal Alcohol Spectrum Disorder (FASD) results in a wide range of impairments on a continuum from mild to severe, with considerable variation in its impact on individual functioning as a result of the complex teratogenic effects of alcohol (Abel & Hannigan, 1995; Barr & Streissguth, 2001; Coles, 1994; Guerri, 1998; Thomas, Warren, & Hewitt, 2010; Uban, Bodnar, Butts, Sliwowska, Comeau, & Weinberg, 2011).

A high proportion of children in care are likely to have been prenatally exposed to alcohol due to

the frequency that parental substance abuse brings families to the attention of child welfare systems, estimated to be from 40% to 80% of families involved with child welfare (Besinger, Garland, Litrownik, & Landsverk, 1999; Curtis & McCullough, 1993; Department of Health and Human Services, 1999; Dore, Doris, & Wright, 1995; McNichol & Tash, 2001; Semidei, Radel, & Nolan, 2001; Young, Gardner, & Dennis, 1998). Spohr, Willms and Steinhausen (1994) report that numerous alcohol-exposed children are not raised by their biological mothers and often spend their lives growing up in child welfare care. Besharov (1994) estimated that between 65% and 80% of children with FASD were raised by someone other than their birth parents. Therefore, determining the number of children with FASD who are in care and learning about the needs of these children, as well as their families and caregivers, is a paramount concern.

The Tri-Provincial FASD Project is a collaborative initiative between Ontario, Manitoba and

Alberta that was formed to address this concern. The project is funded by the Public Health Agency of Canada. Principal researchers are:

Deborah Goodman (Child Welfare Institute, CAS Toronto - Ontario)

Don Fuchs (Faculty of Social Work, University of Manitoba - Manitoba)

Dorothy Badry (Faculty of Social Work, University of Calgary – Alberta)

William Pelech (Faculty of Social Work, University of Calgary - Alberta)

Sharon Long (Child and Family Services Division, Alberta Human Services – Alberta)

Linda Burnside (Avocation: Counselling, Consulting, Research & Training – Manitoba) There are three main objectives identified by the Tri-Province FASD Project. The first objective is

to promote cross-agency, cross-sector, cross-jurisdictional partnerships through a virtual Community of Practice (CoP) website. The second objective is to complete a provincial inventory on current FASD resources, services, needs and gaps for the three partner provinces. These inventories are available through the CoP website. The project’s third objective is to examine the feasibility, data sources and work processes required to conduct a cross-jurisdictional prevalence study on the rate of FASD affecting children in care of the child welfare systems in Ontario, Manitoba and Alberta. This report describes the work completed under the Tri-Province FASD Prevalence Project.

The Tri-Province FASD Prevalence Project builds on the research into FASD affecting children in

care that was conducted in Manitoba under the Prairie Child Welfare Consortium by Don Fuchs and Linda Burnside, beginning in 2004. The high proportion of children with FASD in child welfare care has

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been described in Manitoba (Fuchs, Burnside, Marchenski, & Mudry, 2005): 11% of 5,500 children in care had been diagnosed with FASD and a further 6% were in the process of being tested for the condition, considered to be an underestimation of the actual prevalence within this population due to the stringent criteria used to confirm diagnosis in this study. Additional Manitoba studies have examined the needs and experiences of children and youth with FASD, describing their life trajectories in care (Fuchs, Burnside, Marchenski, & Mudry, 2007), their need for placement stability in adolescence when foster homes tend to breakdown as behavioural challenges increase (Fuchs, Burnside, Marchenski, & Mudry, 2008), the higher costs incurred to provide for their care (Fuchs, Burnside Marchenski, Mudry, & DeRiviere, 2008), their higher utilization and costs of health care services and prescription medications (Fuchs et al., 2009), and their needs as they reach adulthood and are transitioning from child welfare care (Fuchs, Burnside, Reinink, & Marchenski, 2010).

Overview of the Project

The three-year Tri-Province FASD Prevalence Project began in 2011. The aim of the Project is to

estimate the prevalence of FASD affecting children in care in Alberta, Manitoba and Ontario and set the stage for future measures of FASD prevalence affecting children in care at a national level. The Project involved a number of components:

Development of a literature review on the prevalence of FASD (completed September 2011);

Exploration of options for data collection involving the child welfare system databases in the three provinces (completed January 2012);

Determination of the study methodology for each province (completed March 2012);

Approvals from appropriate representatives in each province to proceed with the study (completed April 2012);

Development of a Data Dictionary, comparing terminology, definitions, and measurement strategies across the child welfare systems of the three provinces (completed August 2012);

Confirmation of data collection process and timelines with participating child welfare agencies (completed December 2012);

Data collection (October 2012 – July 2013);

Data analysis and verification with each province’s child welfare system (July 2013 – January 2014);

Approval to release data (completed February 2014); and

Completion of the final report (March 2014).

This report describes the activities and findings of the Tri-Province FASD Prevalence Project. The report begins with an overview of the literature pertaining to the prevalence of FASD, particularly in relation to high risk groups like children in care. (The full literature review paper by Burnside 2011 is available on the FASD and Child Welfare Community of Practice website at www.fasdchildwelfare.ca). Additionally, this report includes a summary of FASD diagnostic practices in each of the participating provinces. The overall methodology for the data collection process and the engagement of provincial partners is then reviewed, with details regarding the variations in approach that were made to accommodate the unique data systems and child welfare service structures in each participating province in the Project. Findings for each province are provided in detail, followed by an overview of the results and the implications for future research into the prevalence of FASD.

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LITERATURE REVIEW

Prevalence refers to the rate of a condition (in this case, FASD) within a population, capturing both new and existing cases during a particular time period, across all age ranges (May & Gossage, 2001). Despite the growing body of literature on FASD as a condition that merits greater understanding and appropriate intervention by schools, health care systems, and social services, most of the professional literature acknowledges that the actual prevalence of FASD is still unknown. It is accepted that FASD is under-diagnosed around the world. The prevalence of FASD worldwide is estimated at 0.33 per 1,000 (Nesbit, Philpott, Jeffery, & Cahill, 2004), viewed to be an under-estimation. Reported rates of Fetal Alcohol Syndrome (FAS) and other types under the FASD spectrum vary greatly:

0.58 per 1,000 prevalence of FAS in a retrospective study of an Aboriginal population in Saskatchewan (Habbick, Nanson, Snyder, Casey, & Schulman, 1996);

9.1 per 1,000 prevalence of FASD, based on data from a Seattle population of children (Sampson, et al., 1997);

1 -3 per 1,000 live births in Canada for FAS, with estimated prevalence of FASD approximately 10 times higher (Health Canada, 2000);

46 per 1,000 prevalence of FASD of Aboriginal children in the Yukon, and 25 per 1,000 for children in northern British Columbia (Asante & Nelms-Matzke, 1985).

There are numerous challenges in measuring the prevalence of FAS. Estimating prevalence is

compromised by inconsistent diagnostic criteria, definitions, and diagnostic assessment processes used across studies, affecting which cases are included or excluded in a given prevalence query (Pacey, 2009). Estimating the prevalence of other types of FASD such as partial FAS (pFAS), Fetal Alcohol Effects (FAE), or Alcohol-Related Neurological Disorder (ARND) is even more challenging due to greater variability in defining diagnostic symptoms, compared to the diagnosis of FAS. As noted by May et al. (2009), “although key diagnostic features of FAS are generally well established, the specific assessment techniques and statistical measurements used to make the definitive diagnosis of FAS and other FASD are still debated” (p. 176). Additionally, FASD is often under-diagnosed due to the inability to confirm maternal substance misuse, one of the key criteria in diagnosis (Aase, 1994; Thomas, Warren & Hewitt, 2010).

Clarren and Lutke (2008) assert that estimating the true prevalence of FAS/FASD is more

complicated than for most other health conditions. Evidence of brain damage is often not evident until the child has reached the school-age years, making early diagnosis difficult, and there are fewer diagnostic resources available for youth and adults, often leaving their functional challenges undiagnosed. Other barriers in determining the occurrence of FASD include reluctance to diagnose due to the stigmatization of the condition (Nesbit, Philpott, Jeffery, & Cahill, 2004), a lack of training in making FASD diagnoses (Clarke, Tough, Hicks, & Clarren, 2005), belief that the condition can be treated effectively without the FASD label (Gardner, 1997) and the lack of diagnostic services in general (Elliott, Payne, Morris, Haan, & Bower, 2008).

The occurrence of FASD is also associated with various environmental and social circumstances. Studies tracking drinking patterns note that young women of child-bearing age are drinking more alcohol than in previous generations, particularly engaging in binge drinking (Autti-Ramo, Fagerlund, Ervalahti, Loimu, Korkman, & Hoyme, 2005; Goransson, Magnusson, Bergman, Rydberg, & Heilig, 2003; Health Canada, 2000), while other studies have found that at least half of all pregnancies are unplanned (Elliott, et al., 2008; Nanson, 1997). Other researchers have focused on maternal risk factors that

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appear to have an influence on the occurrence of FAS due to their association with binge drinking. These factors include use of other drugs including tobacco, a transient lifestyle, unemployment, early age onset of regular drinking, alcohol misuse in the family, tenuous marital status, and community tolerance for heavy drinking (Coyne, De Costa, Heazlewood, & Newman, 2008; Elliott & Hanson, 2006; Gladstone, Levy, Nulman, & Koren, 1997; May et al., 2008). Numerous studies around the world have found that high risk substance use occurs more frequently in groups that are marginalized and oppressed in society due to racism, poverty, isolation, and social discrimination (Abel, 1995; Larkby & Day, 1997; May, 2011). As it pertains to Canada in particular, Philp (2000) speculates that “there are pockets in the country – destitute neighbourhoods and remote alcohol-plagued native reserves – where estimates peg the incidence at nearly one in five” (p. A16). Reported statistics of FASD in First Nations populations include 10.9 per 1,000 in the Yukon and British Columbia (Sandor, Smith, MacLeod, Tredwell, Wood, & Newman, 1981), 190 per 1,000 on a British Columbia reserve (Robinson, Conroy, & Conroy, 1987), and a 7.2 per 1,000 incidence rate in Thompson, Manitoba (Williams, Odaibo, & McGee, 1999). Prevalence statistics stemming from First Nations communities have perpetuated the myth that FASD is an Aboriginal problem (Van Bibber, 1993).

Generally, only children with the most severe expression of FASD (FAS and partial FAS) are the focus of most prevalence studies, as these are the conditions that are easiest to diagnose with some degree of consistency in diagnostic criteria. May et al. (2009) found that some children who had been diagnosed as a result of broad, thorough screening processes did not present with the severe physical, behavioural and intellectual deficits that most often lead to detection and referral for assessment. Estimating Prevalence of FASD

There are three main approaches to measuring the prevalence of FASD: passive surveillance

studies, clinic-based studies, and active case/population-based studies. Varying methodologies make it difficult to compare prevalence rates across studies or even determine which study might approximate the actual occurrence of FAS (May & Gossage, 2001; Ospina & Dennett, 2013).

a) Passive Surveillance Systems – This approach utilizes existing records in a particular geographic area

or with a particular population. Typical records reviewed under this approach include birth certificates, registries of children with disabilities or birth defects, and medical records from diagnostic clinics or hospitals. Assuming that a common definition and diagnostic approach to the confirmation of FASD can be established, this approach can be advantageous, as it accesses existing records, making data collection relatively inexpensive and time efficient.

A frequently cited report by Burd, Martsolf, and Klug (1996) of birth records in North Dakota identified a prevalence rate of FAS as 1.1 – 2.0 per 1,000.

b) Clinic –Based Studies – Clinic-based studies are conducted in health care facilities (e.g. hospitals,

prenatal clinics) and focus on collecting information about mothers’ prenatal health and maternal behaviours (e.g. substance use during pregnancy) using screening questionnaires. The most common method of estimating FASD prevalence, a key advantage of this approach is the opportunity to gather detailed information from women throughout their pregnancies and/or after birth in a standardized way. It is also possible to identify control or comparison groups to analyze differences between jurisdictions or within a clinic’s own population.

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A longitudinal study by Sampson et al. (1997) based on the clinical data gathered in Seattle (Streissguth, Aase, Clarren, Randels, LaDue, & Smith, 1991; Streissguth et al., 1994) estimated the rate of FAS and ARND combined to be 9.1 per 1,000, a figure that is often quoted but still considered to be a conservative rate.

c) Active Case Ascertainment Methods – Active case ascertainment models focus on small, specific

populations or groups (often those who are considered at high risk for prenatal alcohol exposure) and assess for characteristics of FASD. This approach tends to yield the highest number of cases and rates of FASD for a particular population. High risk groups are often those most affected by poverty and adverse life circumstances, often resulting in a higher representation of indigenous populations in FASD prevalence reports. However, active case ascertainment approaches are time and labour intensive and, as a result, can be costly.

An active case ascertainment study by Robinson, Conry and Conry (1987) examined every child living in an isolated British Columbia reserve (102 children), and found a prevalence rate of 190 per 1,000.

Each approach to estimating prevalence discussed above has its strengths and limitations, which

must be understood to appreciate the interpretation of reported prevalence rates. To date, no universally accepted methodology has been identified that would help to determine the actual rate of FAS. May et al. (2009) found that the highest rates of FAS were reported by clinic-based and active case ascertainment approaches, especially the latter which has tended to study high risk populations.

However, active ascertainment models focusing on high risk populations with high alcohol

consumption are prone to finding higher levels of FASD (which may not be applicable to lower risk groups where alcohol consumption is not as high). The high prevalence rates associated with a particular population can also be misinterpreted to mean that FASD is specific to that group, often denoted by cultural origin or geographic location, rather than recognizing the characteristics of poverty, oppression, adverse life experiences, and subsequent high alcohol use as the main factors.

Pacey (2009) is particularly critical of group-specific active case ascertainment studies, citing a

number of cautions that can lead to erroneous assumptions about actual prevalence. He states: In absolute terms, even if prevalence is potentially higher among Aboriginal people in Canada, the proportional difference in population size means that the numeric ‘burden’ of FAS or FAS/ARND is greater in the non-Aboriginal population. (p. 20) To illustrate this point, Pacey summarizes the prevalence findings reported by Sampson et al.

(1997), as shown in Table 1 below (Pacey, 2009, p. 20).

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Table 1 Populations

Total Aboriginal North American Indian

Métis Inuit Non-Aboriginal

TOTAL 29,639,030 976,305 608,850 292,305 45,070 28,662,725

FAS Prevalence

2.8/1,000 82,989 2,734 1,705 818 126 80,256

4.8/1,000 142,267 4,686 2,922 1,403 216 137,581

Combined FAS and ARND

9.1/1,000 269,715 8,884 5,541 2,660 410 260,831

FASD and Child Welfare

Unsurprisingly, the nature of alcohol addiction and adverse life circumstances associated with maternal binge drinking (and therefore the occurrence of FASD) are also strongly associated with children needing child welfare intervention. However, the actual prevalence of FASD affecting children in care in Canada is currently unknown. To date, the only study that captured case-level data about the number of children in care with FASD was conducted by Fuchs, et al. in 2005, which found that 11% of children in care had been diagnosed with FASD (following stringent criteria for how diagnoses had been made) and a further 6% were in the process of being assessed for FASD (defined as “suspected FASD”).

To add to the challenge, Aronson (2000) observes that information confirming maternal alcohol use in pregnancy (which is necessary for an FASD diagnosis) is often not well documented for children in care, particularly those who have become permanent wards and where no contact occurs between the biological family and the child welfare agency to make inquiries about the child’s prenatal history. Additionally, Nanson (2003) and Chasnoff (2011) each caution that it can be difficult to isolate FASD as the cause of the many issues facing children in care, given the extensive literature on the effects of out-of-home placement on children and the consequences of adverse life experiences, such as abuse, that may have precipitated the child’s admission to care.

In Canada, it is well documented that Aboriginal children are significantly over-represented in child-in-care populations across the country, especially in the western Canadian provinces (Blackstock, 2007; Blackstock, Prakash, Loxley, & Wien, 2005; Blackstock, Trocmé, & Bennett, 2004) and that they come into care more frequently partly as a result of the presence of multiple risk factors such as poverty, oppression, compromised parenting abilities as a result of the impact of the residential school system, and other social, economic and cultural variables (Fluke, Chabot, Fallon, MacLaurin, & Blackstock, 2010). Therefore, there is an increased likelihood that Aboriginal children in care will have been exposed to alcohol during pregnancy because of these social and environmental factors that contribute to high risk substance use. Given this cultural over-representation, the active case ascertainment approach to prevalence estimation can perpetuate the perception that FASD is an Aboriginal issue or a child welfare issue alone and that children in the overall population are not affected.

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While erroneous assumptions about the prevalence of FASD and the demographics of affected children in care must be challenged, it is still important to focus prevalence measurement strategies on high risk populations such as children in care. Knowing how many children in care are affected by FASD allows child welfare agencies to determine:

How many children in care need specialized supports?

What kinds of services they may need to assist them in coping with their disability (for example, according to age and stage of development)?

How many foster parents with knowledge of FASD are required to deliver specialized care?

How many staff need training in FASD and available services?

What kinds of agency policies are needed to guide specialized services?

What kind of funding is required to meet the needs of the population?

What additional resources are needed due to the size of the population in need?

DIAGNOSIS OF FASD IN CANADA One of the biggest challenges in establishing prevalence rates of FASD is ensuring that cases of

FASD are detected and diagnosed (Warren & Foudin, 2001). The Canadian Guidelines for the Diagnosis of FASD (Chudley, Conry, Loock, Rosales, & LeBlanc, 2005) propose diagnostic criteria for the determination of FAS, pFAS, and ARND. The absence of any other diagnosis and evidence of prenatal alcohol exposure are foundational criteria required for the diagnosis of any FASD. FAS is characterized by a) a distinct dysmorphology, including facial features such as a flattened area between the upper lip and nose, thin upper lip, epicanthal folds, and a narrow palpebral fissure (the length of space between the margins of the eyelids); b) a constellation of central nervous system effects; and c) evidence of significant pre- or post-natal growth impairment (less than the 10th percentile). Partial FAS is characterized by the same criteria, with fewer facial anomalies and no growth impairment. ARND is diagnosed on the basis of three central nervous system effects, without the facial dysmorphology or growth impairment. With ARBD covering an even broader range of alcohol-effect conditions than ARND, the Canadian Guidelines suggest using the diagnosis of ARBD with caution due the challenges in defining clear diagnostic criteria.

While classic FAS is indicated by distinctive facial features, these features may not be noticeable

until after the child has reached the age of two years (Larkby & Day, 1997), and may be less evident once the child has reached adolescence (Clarren & Lutke, 2008; Larkby & Day, 1997; Streissguth, et al., 1991). Additionally, there may be variations in facial features that have cultural origins, with no relationship whatsoever to prenatal alcohol exposure, which complicates accurate diagnosis of FAS (Aase, 1994). Further, according to Chudley (2008), since children with ARND do not have facial dysmorphology, they are the least visible and therefore the least likely to be identified as having a condition related to prenatal alcohol exposure. Many receive a wide range of different diagnoses, obscuring the prevalence of FASD (Chudley, 2008; Thomas, Warren, & Hewitt, 2010). This has a profound impact on determining the prevalence of FASD, as Chudley estimates that “for every child with full blown FAS, there are three or four who have ARND” (p. 721). Conversely, Pacey (2009) cautions that ARND may be subject to over-diagnosis because the effects of ARND are not as specific as FAS.

Since the publication of the Canadian Guidelines in 2005, they have been consistently

referenced and actively used by diagnostic clinics in Canada (Clarren, Lutke, & Sherbuck 2011). The authors located diagnostic clinics in 2011 for a survey regarding the adoption of the Canadian Guidelines

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and found that 74% were using the diagnostic framework. Diagnostic clinics were mainly located in western and northern Canada (British Columbia – 9 clinics; Alberta – 18 clinics; Saskatchewan- 5 clinics; Manitoba – 1 clinic; and the Yukon - 2 clinics) with some in central and eastern Canada (Ontario – 6 clinics; and New Brunswick – 2 clinics). No FASD assessment programs were identified in the remaining provinces or territories. The authors note that Canada does not currently have the capacity to assess all individuals, especially older adolescents and adults, who may be affected by FASD. Specific information concerning the diagnostic capacity of the three provinces participating in this Project, is as follows:

Alberta

In 2013, there were 21 FASD assessment and diagnostic clinics in Alberta, conducting more than

400 diagnostic assessments annually of children, youth and adults (although not all clinics have the capacity to assess adults). Clinics may be overseen by community agencies or by government programs and are located in all regions of the province: Calgary (three), Edmonton (five), Lakeland (one), MacKenzie (two), Northeast (one), Northwest (two), Northwest Central (one), East Central (one), Southeast (two), South (two) and Central (one).

Manitoba

Manitoba continues to have only one FASD diagnostic clinic in the province. The Manitoba FASD

Centre was established in 2009, a descendent of the former Clinic for Alcohol & Drug Exposed Children (CADEC) that had existed since 1999. The new clinic expanded its services to include assessments of youth, and plans to incorporate assessments of adults in the future. Referrals can be made by physicians and other health care professionals, child welfare practitioners, school personnel, and other community professionals. There are eleven FASD Diagnostic Coordinators in five health regions throughout the province that assist coordinating assessments for children and youth in either Winnipeg or Thompson (where the Manitoba FASD Centre also conducts diagnostic assessments).

Ontario

In 2006, Ontario had eight diagnostic clinics and was just beginning to create a provincial

network for consistent diagnostic practice and strategic development (Guilfoyle, 2006). Challenges included “shoestring budgets” (Guilfoyle, 2006, p. 47) and long waitlists. Diagnostic clinics in Ontario have expanded to 12 clinics in 2013. At least one clinic is available in the regions of Kingston, London, Peel, and Sudbury, while Durham Region has two, and Toronto has six. However, some clinics ceased to operate due to lack of fundings. An example is the Northwestern Ontario FASD Clinic with sites in Kenora and Sioux Lookout that closed in 2006, despite receiving more than 250 referrals in an 18-month period. Other clinics, such as the one in Peel Region, only provide assessments for children between the ages of 0 – 6 years. Diagnostic clinics network through the Fetal Alcohol Spectrum Disorder Ontario Network of Expertise (FASD ONE), available online at http://www.fasdontario.ca/cms/.

Although there is consistency across Canadian diagnostic clinics in following the criteria set out

by the Canadian Guidelines, access to diagnostic services and waitlists affect the process of diagnosis and therefore the number of affected individuals who have been diagnosed. Clarren, Lutke, and Sherbuck (2011) estimated that a 17-fold increase in FASD diagnostic capacity across Canada is needed to meet the need for diagnostic services.

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TRI-PROVINCE FASD PREVALENCE PROJECT STUDY METHODOLOGY Specific research into the prevalence of FASD affecting the child-in-care population is at a

beginning stage. As noted above, one approach to measuring prevalence is known as active case ascertainment, which focuses on a small, specific population considered to be at high risk for FASD, such as children in care. This approach yields the highest prevalence rates of FASD but risks the assumption that FASD is a serious issue for only the high risk group, not the general population.

The Fuchs et al. (2005) study of children in care with disabilities (including FASD) used an active case ascertainment methodology to gather data that involved research associates going to each child welfare agency office throughout Manitoba and reviewing paper files of children in care with disabilities as identified by case managers, according to standardized definitions. At the conclusion of the study, Manitoba’s Child and Family Services Information System (CFSIS) was updated to include data fields that allowed for the entry of data pertaining to children’s disabilities. These data fields did not exist in CFSIS prior to the study, so there was no electronic way to capture information about FASD or other types of disability.

Eventually, the data collected from the 2005 study was entered into the new windows and data

fields developed in CFSIS, providing the opportunity for ongoing updating and new entries to better track information about FASD and other medical conditions affecting children in care. The majority of the authors’ subsequent FASD studies made use of this new information in the database to identify samples of children with FASD and examine their service trajectories while in care (Fuchs, Burnside, Marchenski, & Mudry, 2007), placement patterns in adolescence (Fuchs, Burnside, Marchenski, & Mudry, 2008), the cost of providing for their care (Fuchs, Burnside Marchenski, Mudry, & DeRiviere, 2008), and the utilization and costs of health care services and educational experiences (Fuchs et al., 2009), the latter being a study in partnership with the Manitoba Centre for Health Policy that linked data from CFSIS with data from other provincial services held in a centralized data repository.

The present study also used an active case ascertainment approach, in that it focused on the

high risk group of children in care and actively sought out information on those children in care who had been affected by FASD. However, unlike the 2005 study, the Tri-Province FASD Prevalence Project did not have the staff or time resources to travel to every child welfare agency in each province to gather data from paper files. Further, with advances in technology, the availability of electronic databases provides an advantageous avenue for data collection. Consequently, this study explored the inclusion of the passive surveillance approach to data collection, through the use of existing administrative data collection systems for the child welfare services in each participating province.

Increasingly, child welfare administrative databases are utilized for research, outcome

measurement, and quality assurance (Drake & Jonson-Reid, 1999). In particular, maintaining detailed and accurate administrative databases in child welfare is promoted as a means to enhance practice (North Carolina Division of Social Services and the Family and Children’s Resource Program, 2004), ensure oversight (United States General Accounting Office, 2004), and strengthen accountability (National Technical Assistance and Evaluation Center, 2010). Advantages of using existing administrative databases include time efficiencies and lower study costs as data is collected during the conduct of normal service provision (Brownell & Jutte, 2013), larger datasets in order to track trends longitudinally (Fallon, Trocmé, Fluke, MacLaurin, Tonmyr, & Yuan, 2010), and the possibility of linking child welfare databases to other public services such as health care (O’Donnell, Scott, & Stanley, 2008; O’Donnell, Nassar, Leonard, Mathews, Patterson, & Stanley, 2010).

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However, there are also important limitations in utilizing existing administrative child welfare

databases. Administrative databases are not necessarily adaptable to research questions, as they are set up for other purposes and may not capture variables of research interest or importance (Brownell & Jutte, 2013; Drake & Jonson-Reid, 1999; Trocmé, MacLaurin, Fallon, Shlonsky, Mulcahy, & Esposito, 2009). Waldfogel (2000) asserts that child welfare databases only tell part of the story, as the insights gained from children involved with child welfare are limited if we do not also understand the experience of children in the general population in terms of the factors that lead to maltreatment and how children fare after they have received child welfare services. Parton (2009) criticizes the shift from social work practice to information tracking, stating that “social work increasingly acts to take subjects apart and then reassembles them according to the requirements of the database”, leaving us with “a variety of surface information which provides little basis for in-depth explanation or understanding” (p. 718). Further, the fast pace and constant demands placed on child welfare agencies, usually externally imposed, often interfere with the time-consuming recordkeeping that is necessary to keep child welfare databases current (Collins-Camargo, Shackelford, Kelly, & Martin-Galijatovic, 2011). Consequently, data quality can be affected by inaccurate and incomplete data entry, insufficient training of case workers on use of the data system, and difficulty in accessing technical support to resolve data entry issues (United States General Accounting Office, 2003). Finally, although each province and territory in Canada maintains administrative data concerning the children and families receiving child welfare services, differences in definitions, terminology, and measurement strategies create challenges for comparisons of data across jurisdictions (Fallon, et al., 2010).

To counteract some of these challenges, researchers may use standardized instruments to

collect data directly from workers, rather than relying solely on administrative databases (Collins-Camargo, et al., 2011). For example, the Canadian Incidence Study of Reported Child Abuse and Neglect asked primary child welfare caseworkers to complete a three-page standardized form documenting non-identifying demographic information about children involved in a maltreatment report, descriptive information about the caregivers in the home, and details about the incident of maltreatment and the outcome of the investigation (Canadian Child Welfare Research Portal, 2008). One of the advantages of this approach, according to Fallon, et al., (2010), was the opportunity to analyze trends “in more detail than is possible using current provincial and territorial administrative information systems” (p. 76). Using administrative databases also requires researchers to work collaboratively with agency staff who collect and enter data into the system, as they “possess useful information about the validity of certain fields of which research cannot afford to be ignorant” (Drake & Jonson-Reid, 1999, p. 311). However, whether using a centralized database or standardized data collection tools – or both – data collection is often dependent upon partnership with those who are entering the data and mitigating intrusion by systemic factors beyond the control of both agencies and researchers, such as hiring freezes, the introduction of new information management systems, policy changes, and system priorities and crises (Collins-Camargo, et al., 2011).

As noted above, the present study utilized an active case ascertainment approach (focusing on a

population at high risk for FASD). In order to explore the feasibility of utilizing existing child welfare databases to achieve time and cost efficiencies as well as ensure inclusion of all children in care in each jurisdiction (that is, features of the passive surveillance approach to prevalence estimation), consultations were held with government representatives and other practitioners in each province. Both Alberta and Manitoba have provincial child welfare databases utilized (with some limitations) by all child and family services agencies. Ontario does not yet have a centralized provincial child welfare database, although individual Children’s Aid Societies use administrative databases and submit various

11

reports and data to the provincial government, but not including consistent information with regard to FASD.

After the consultation process to determine the feasibility of utilizing status of provincial child

welfare databases was complete, researchers worked with provincial representatives to develop a “Data Dictionary” to identify child welfare terminology and definitions for the relevant variables for this study, the capacity of these variables to be tracked through child welfare databases, and the universal availability of data for each variable throughout the respective databases. The study variables included:

Definition of a “child in care”

Gender

Date of birth

Cultural status

Authority of service

Legal status

Primary reason for admission to care

Placement type

Diagnosed FASD

Suspected FASD Neither of the existing provincial child welfare databases in Alberta or Manitoba had current

FASD data available in the system for extraction at the start of the study, necessitating the engagement of case managers in updating their respective databases (or providing data through a standardized data collection instrument in communities where the centralized database was not employed).

Although the specific data collection approaches in each province will be described in more

detail in the subsequent section, the point raised here is that the need to engage frontline staff from each jurisdiction in providing updated information about children in care with FASD on their caseloads was advantageous to this study. It helped to ensure that all social workers across the three provinces used the same definition of diagnosed or suspected FASD, to enhance the opportunity to compare prevalence rates across the three jurisdictions. The definitions utilized were consistent with the definitions used in the Fuchs et al. 2005 study:

a. A child who has been diagnosed with FASD is one who has received the diagnosis by a recognized practitioner qualified to make FASD diagnoses; and

b. A child who is suspected of having FASD is one who is currently awaiting assessment by a qualified practitioner, or has been assessed but a formal diagnosis is not possible due to the inability to confirm maternal substance use during pregnancy.

Despite efforts to utilize a common definition of diagnosed and suspected FASD to improve

consistency is measuring prevalence in this study, both within each participating province and across provinces, it is important to note other differences in variables across jurisdictions may limit direct comparisons of prevalence rates of FASD. These differences were considered in the description and discussion of the study findings.

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Alberta Study Methodology In Alberta, child intervention services (known as child protection services in other Canadian jurisdictions) are delivered by ten regional Child and Family Services Authorities (CFSAs), which are overseen by the provincial Ministry of Human Services, and 18 Delegated First Nation Agencies (DFNAs) that have individually negotiated agreements with the Ministry to provide child intervention services to children and families living in First Nations communities in Alberta. A decade ago with the passing of the Child, Youth and Family Enhancement Act, child intervention services were restructured into family enhancement services (which aim to help families address issues to prevent family breakdown while ensuring that children can live in a safe and healthy home environment) and child protection services (if the child’s best interests and safety cannot be met by continuing to live at home). With the introduction of family enhancement cases, the number of child protection cases decreased, although the overall number of child intervention cases remained steady (Gough, 2006a). Under the Child, Youth and Family Enhancement Act, child intervention services are provided for children and youth up to their 22nd birthday.

At the time of the study, the child welfare database system in Alberta was migrating from one system to a new one over many months from 2011 to 2012. The existing client data from the Child Youth Information Module (CYIM) needed to be entered into the new system, known as the Intervention Services Information System (ISIS), before any CFSA could participate in the study. The data that was transferred did not contain details regarding FASD as the previous database did not have the capacity to track disabilities, so caseworkers were asked to update their records in ISIS a minimum of two months after becoming familiar with the new data system. The research data updating process was aligned with the ISIS migration periods denoted in the table below (Table 2). After each migration period was completed, CFSAs were approached to ask their staff to update their records in ISIS, as outlined in a detailed letter of instruction (Appendix A). Once approval was granted by the CFSA confirming the intent to participate in the project, caseworkers were given a one-month time period within which to update their records with regard to children in care with FASD, as per the definitions of diagnosed and suspected FASD provided above.

Table 2 – Alberta Database Migration and Data Entry Schedule

REGION CODE

REGION NAME

MIGRATION COMPLETION

APPROVAL GRANTED

DATA ENTRY PERIOD

Region 1 Southern December 2011 September 2012 Oct 1 – 31, 2012

Region 9 Northeast December 2011 September 2012 Oct 1 – 31, 2012

Region 5 East Central January 2012 December 2012 Jan 1 – 31, 2013

Region 2 Southeast January 2012 December 2012 Jan 1 – 31, 2013

Region 7 North Central March 2012 December 2012 Jan 1 – 31, 2013

Region 8 Northwest March 2012 December 2012 Jan 1 – 31, 2013

Region 4 Central May 2012 December 2012 Jan 1 – 31, 2013

Region 3 Calgary and Area January 2013 February 2013 March 1 – 31, 2013

Region 6 Edmonton and Area April 2013 May 2013 June 1 – 30, 2013

Region 10 Metis Settlements April 2013 May 2013 June 1 – 30, 2013

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Both the CFSAs and the DFNAs use the same information system to enter child intervention data, and the information is available to all provincial users, regardless of whether they are employed by a CFSA or a DFNA. Although the DFNAs were invited to participate in the study and interest was expressed, the final ISIS data query yielded limited information from the DFNAs, which was statistically unreliable. Therefore, children in the care of the DFNAs were not included in the study. Manitoba Study Methodology Child welfare services are provided to children and youth up to the age of 18 under the Manitoba Child and Family Services Act. Manitoba has 25 child welfare agencies (plus a centralized intake agency in Winnipeg) that fall under four Child and Family Services Authorities: the First Nations of Southern Manitoba Child and Family Services Authority (9 agencies, plus oversight of the intake agency), the First Nations of Northern Manitoba Child and Family Services Authority (6 agencies), the Metis Child and Family Services Authority (2 agencies) and the General Child and Family Services Authority (8 agencies). The agencies have concurrent jurisdiction as opposed to being solely geographically based (Gough, 2006b). The provincial expectation is that each agency will use the Child and Family Services Information System (CFSIS) to record all demographic and case related information about children and families receiving services. As noted earlier, since 2005, CFSIS has had the capacity to track information about children’s health conditions including FASD. However, not all child welfare agencies in Manitoba have used CFSIS to record information about their children in care. Further, even those agencies that are using CFSIS may not be using the database to record information beyond basic demographic details, such as information about disabilities like FASD. As identified previously, this was considered to be an advantage for the project, as CFSIS does not provide definitions to staff to ensure consistent data entry on this variable. Therefore, workers were asked to update their records in CFSIS for children in care who had been diagnosed with FASD or were suspected of having FASD according to the definitions provided above, during a designated time period for data entry. The data entry period was negotiated with each Child and Family Services Authority, and data was updated between October 2012 and June 2013. Information about participation in the project was provided to social workers in a letter (see sample in Appendix B). For those agencies/offices that were not consistently using CFSIS at the time of the study, social workers were asked to complete a short data collection form that captured the same data variables as the information gathered from CFSIS in the data query (Appendix C). These variables were:

Gender

Date of Birth

Cultural Status

Authority of Service

Agency

Legal Status

Placement

Primary Reason for Coming Into Care

Diagnosis of FASD

Date of Diagnosis

Suspicion of FASD

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Ontario Study Methodology The Ontario Ministry of Children and Youth Services (MCYS) administers 47 Children’s Aid Societies (CASs), each of which is an independent, non-profit agency overseen by a board of directors elected from the local community. Child protection services are mandated under the Ontario Child and Family Services Act and provided to children and youth who are under the age of 16 or are in a Society’s care (Gough, 2005). Five of the Societies are First Nations agencies that provide services on reserve, while one is an urban Aboriginal agency. As noted above, there is no province-wide information system for child welfare. Although many agencies have their own databases, the information systems, definitions, and data collection practices are not uniform across the province nor are they linked in a centralized way (Commission to Promote Sustainable Child Welfare, 2012). However, the Ministry has announced the development of the Child Protection Information Network (CPIN) which will be implemented in 2015 and mandated for use by all Ontario children’s aid societies (MCYS, 2013). In order to identify a common approach to data collection in this study, consultation was held with staff of the Ministry, the Ontario Association with Children’s Aid Societies (OACAS), and the Child Welfare Institute at the Children’s Aid Society of Toronto. It was noted that other studies, such as the 2007 study by Burge on the prevalence of mental health disorders affecting children who were in the permanent care of Ontario CASs, utilized a sampling approach. One method to sample consistent information about children in care across Ontario CASs that was identified was through the Looking After Children initiative. Looking After Children (LAC) is an international child welfare framework that monitors outcomes for children and youth in care. First piloted in Ontario in 1995, full implementation of the Ontario Looking After Children (ONLAC) in all CASs was mandated in 2008. The ONLAC addresses several different key dimensions of children’s development: health, education, identity, family and social relationships, social presentation, emotional and behavioural development, and self-care skills (Kufeldt, Simard, & Vachon, 2000; Lemay & Ghazal, 2007). This strengths-based model brings the child in care, his or her caregiver, and the child welfare worker together to assess the child’s development collaboratively and develop plans to guide and monitor the child’s progress. The core tool is the Assessment and Action Record (AAR) completely annually after the child’s birthday, which tracks the child’s life experiences in care. This standardized information tool allows for consistent data collection and aggregate data analysis to track trends and patterns provincially, by agency, and by age group to measure child outcomes and inform agency policy development (Bailey, Thoburn, & Wakeham, 2002). Despite the shared data collection through ONLAC, information regarding FASD has been a relatively new addition to the ONLAC. For example, the Year 12 ONLAC report (Miller & Flynn, 2013) reported that 16% of children and youth ages 0 – 15 had FASD. However, ONLAC provides no definitions regarding the diagnosis of FASD, nor is there an opportunity to track suspected FASD – the variable is indicated by either “yes” or “no”. This therefore presented an opportunity to add a brief supplement to the AAR, requesting that social workers forward information regarding diagnosed and suspected FASD based on the study definitions outlined above with the annual AAR. As AARs are completed throughout the calendar year, a data collection time period of December 1, 2012 to March 31, 2013 was identified for data collection. That is, social workers were asked to complete the FASD supplement form for every child in permanent care whose birthday prompted the completion of the annual AAR during this time period. The letter of instruction to social workers is provided in Appendix D, and the FASD supplement is provided in Appendix E. Fifteen CASs agreed to participate in the study, although data were received from only 13 CAS agencies.

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FINDINGS The methodology employed in this study aimed to identify common variables (for example, children in care, their ages, legal status, and placement status) and common definitions (such as the definitions of diagnosed and suspected FASD) to estimate the prevalence of FASD affecting children in care in three provinces of Canada: Alberta, Manitoba and Ontario. Although the methodology in Alberta and Manitoba utilized existing child welfare information systems, the approaches in all three provinces relied on the data submitted by social workers regarding children in care on their caseloads who had been diagnosed with FASD or met the definition of a child with suspected FASD. Despite the efforts to create a common foundation for the estimation of the prevalence of FASD in all three provinces, comparisons in prevalence rates across the provinces are not possible due to different contextual factors in each province that affect both child welfare service delivery and FASD diagnostic capacity and processes. Alberta The total number of children ages 0 - 17 in the care of the ten Alberta Child and Family Services Authorities (CFSA) regions as per the Intervention Services Information System (ISIS) query conducted on August 1, 2013 was 6,767. About 52% of the group was male and there were more preschool (36.6%) and school age (34.4%) children in care than adolescents (28.7%). About 59% of the children were Aboriginal. The age and gender breakdown is provided in Table 3: Table 3 – Alberta Children in Care Total Population

Male Female Total

Ages 0 – 5 1,267 1,230 2,497

Ages 6 - 12 1,288 1,040 2,328

Ages 13 - 17 984 958 1,942

Total 3,539 3,228 6,767

The majority of children in care of the ten Child and Family Services Authority regions (4,140 or

approximately 61%) were in the permanent care of the Alberta government’s child welfare system. The remaining 39% (2,626 children) were in some form of temporary care, including under apprehension, a custody agreement, a temporary order, or a supervision order. The likelihood of being in permanent care was higher for adolescents (1,525 youth were under a permanent order, compared to 417 in temporary care) than preschool children (1,137 children ages 0 – 5 had a permanent legal status, while 1,360 were in temporary care). The most common placement type for children in care in Alberta was Authority Foster Care (2,048 or approximately 30%) or Agency Foster Care (1,369 or about 20%). Kinship care was the next most frequent placement type, with 981 children (almost 15%) in Authority Kinship Care and a further 172 children (about 2.5%) in Agency Kinship Care. However, as a sub-group, adolescents were more likely to be placed in Group Care (14%) than in Agency Kinship Care (11%) and about 10% were in independent living.

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Total FASD (Diagnosed and Suspected Combined)

To determine if a child had FASD (diagnosed or suspected), the "Medical Condition" field in ISIS was used. Children who had either "Fetal Alcohol Spectrum Disorder" or "Pre-Natal Exposure Alcohol" recorded were determined to have FASD. The "Condition comments" and "Condition diagnosis" narrative fields were used to determine which children had diagnosed vs. suspected FASD. This resulted in a total of 699 children from the 6,767 population of children in care identified as having diagnosed or suspected FASD, a 10.3% prevalence rate, as illustrated in Table 4. Approximately 90% were in the permanent care of the Alberta government, with about half placed in Authority Foster Care (48%) and a further 15% in Agency Foster Care. Kinship care was the third most common placement type (11%), followed by group care (7%) and independent living (2%). There were more males (59%) than females (41%).

Table 4 - Alberta Children with FASD (Diagnosed and Suspected Combined)

Male Female Total Ages 0 - 5 73 81 154

Ages 6 - 12 168 99 267

Ages 13 - 17 170 108 278

Total 411 288 699

Chart 1 compares the number of children with FASD (diagnosed and suspected combined) in

each age group to the total number of children in care in each age group. Chart 1 – Alberta Children with FASD and Total Child in Care Population

154 / 2,497 267 / 2,328 278 / 1,942 699 / 6,767

0

1000

2000

3000

4000

5000

6000

7000

8000

0-5 years 6-12 years 13-17 years Total

Total FASD

Total CIC

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Diagnosed and Suspected FASD

The proportion of children with diagnosed FASD in the ten CFSA regions was 280 children, for a prevalence rate of 4.1%, while 419 children were suspected of having FASD, a prevalence rate of 6.2%. The breakdown of children per age group with diagnosed or suspected FASD is shown in Table 5. Table 5 – Alberta Children in Care with Diagnosed and Suspected FASD

Summary

An analysis of updated ISIS data identified 699 children in care in Alberta out of the total

population of 6,767 children in care of the ten CFSA regions who had either diagnosed or suspected FASD, according to the definitions framed in this study – a prevalence rate of 10.3%. A previous study by Alberta Health and Wellness (2000) estimated that up to 29% of children in care were diagnosed with FASD, although definitions and measurement strategies differed in this study. A review of the current data with the Alberta lead and other ministry stakeholders confirmed challenges with data entry as a result of the migration process from one data system to another and workload challenges during the timeframe of this study. Consequently, the findings of this study reveal an under-estimation of the prevalence of FASD.

Manitoba The query of the Manitoba Child and Family Services Information System (CFSIS) conducted on July 2, 2013 identified 7,799 children in care, ages 0 – 17, from all four Child and Family Services Authorities in Manitoba. Due to the rising number of youth receiving child welfare services after age of majority, this study included youth ages 18 – 21, bringing the total number of children in care in Manitoba to 9,317. However, as only three of the six agencies under the Northern Authority were able to participate in the study, the project focused only on the remaining 22 child welfare agencies and the centralized intake agency, who collectively had 8,323 children in care. About half of the 8,323 children in care were male and the other half were female. The majority (35%) were aged 6 – 12 years, with 29% aged 0 – 5 years, 30% aged 13 – 17 years, and 6% were aged 18 – 21 years and in receipt of extension of care services into adulthood. About 76% of the children in care were Aboriginal. The age and gender breakdown is illustrated in Table 6. Table 6 – Manitoba Children in Care Total Population

Male Female Total Ages 0 - 5 1,198 1,210 2,408

Ages 6 - 12 1,483 1,425 2,908

Ages 13 - 17 1,227 1,256 2,483

Ages 18 - 21 260 264 524

Total 4,168 4,155 8,323

Male Diagnosed

Female Diagnosed

Total Diagnosed

Male Suspected

Female Suspected

Total Suspected

Ages 0 - 5 8 8 16 65 73 138

Ages 6 - 12 65 36 101 103 63 166

Ages 13 - 17 95 68 163 75 40 115

Total 168 112 280 243 176 419

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More than half of the children (53%) were in the permanent care of a child welfare agency in Manitoba. While an additional 343 youth were officially designated as having extension of care (or transitional planning) status, it should be noted that one of the requirements under the Manitoba Child and Family Services Act is that extension of care services are only provided to permanent wards. Therefore, 57% of children and youth in the sample either had or previously had been in the permanent care of the child welfare system. Foster homes were the placement type for approximately 55% of the children in care, followed by Place of Safety (known as kinship placements in many other jurisdictions) for 13% of the sample. However, it should be noted that the placement type was missing for 16.4% of the children in the sample.

Total FASD (Diagnosed and Suspected Combined)

In CFSIS, the fields identifying diagnosed and suspected FASD are located in the “Person Disability” section under “Cognitive/Intellectual” disability. Based on the study definitions of diagnosed and suspected FASD, children who had “FAS diagnosed”, “Partial FAS”, or “ARND (Alcohol Related Neurological Disorder)” recorded were determined to have FASD, while the option “Suspected FASD” was used as the indicator for suspected FASD. This resulted in 1,021 of the 8,323 children and youth ages 0 – 21 identified as having diagnosed or suspected FASD, a 12.3% prevalence rate, as illustrated in Table 7. The vast majority (77%) were in the permanent care of a child welfare agency, and an additional 6.5% were youth in receipt of extended care services. Most were placed in foster homes (66.4%) or specialized foster homes (11.6%).

Table 7 – Manitoba Children with FASD (Diagnosed and Suspected Combined)

Chart 2 compares the number of children with FASD (diagnosed and suspected combined) in each age group to the total number of children in care in each age group.

Male Female Total Ages 0 - 5 90 59 149

Ages 6 - 12 213 151 364

Ages 13 - 17 255 154 409

Ages 18 - 21 58 41 99

Total 616 405 1,021

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Chart 2 – Manitoba Children with FASD and Total Child in Care Population

149 / 2,408 364 / 2,908 409 / 2,483 99 / 524 1,021 / 8,323

The total FASD prevalence rate was also calculated for the 0 – 17 child in care population in Manitoba. Of the 7,799 children in this group, 922 were identified with diagnosed (414 children) or suspected (508) FASD, with a total prevalence rate of 11.8%.

Diagnosed and Suspected FASD

The number of children and youth diagnosed with FASD in the 1,021 sample was 487, for a prevalence rate of 6.0%. The proportion of children and youth suspected of having FASD was 534, a prevalence rate of 6.4%. A comparison across age groups and genders is provided in Table 8.

Table 8 – Manitoba Children in Care with Diagnosed and Suspected FASD

Summary

The sample of 8,323 children in care ages 0 – 21 in Manitoba was determined to have 1,021

children and youth with diagnosed or suspected FASD recorded in CFSIS, a prevalence rate of 12.3%. As noted above, the sample was based on 22 of the 25 agencies in the province, as well as the centralized intake agency in Manitoba. The prevalence rate is lower than the 17% identified in the 2005 study of children in care with disabilities (Fuchs, et al., 2005). Although both studies used the same definitions of diagnosed and suspected FASD, the first study collected data through a manual review of paper files conducted by research associates, while the present study relied on updates to the centralized information system by case managers. Barriers to data entry by case managers noted by administrators included workload and competing priorities. However, it should be noted that the real numbers of children with FASD have increased: 963 children and youth ages 0 – 21 were identified in 2005, compared to the 1,021 children with FASD identified in the present study.

Male Diagnosed

Female Diagnosed

Total Diagnosed

Male Suspected

Female Suspected

Total Suspected

Ages 0 - 5 14 3 17 76 56 132

Ages 6 - 12 88 60 148 125 91 216

Ages 13 - 17 156 93 249 99 61 160

Ages 18 - 21 44 29 73 14 12 26

Total 302 185 487 314 220 534

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Ontario There were 13 Children’s Aid Societies (CAS) in Ontario that submitted data regarding children who had been in care for at least a year, who had (or were in the process of attaining) permanent care status, and whose birthday occurred between December 1, 2012 and March 31, 2013, the process that triggered the completion of the annual Assessment and Action Record (AAR) through Ontario’s Looking After Children (ONLAC) initiative. Documentation was received for 533 children who met the criteria within the 13 participating agencies, although it is likely that not all AARs for eligible children were completed and submitted within the study time period. Therefore, the findings must be interpreted within the limitations of the sample size, due to the small number of agencies participating in the study, the sample time period of four months, the limitation due to legal status and duration of time in care, and the completion rate of the data forms. Unfortunately, there is no mechanism to determine how many AARs should have been completed during this time period, so the findings are based on what data was received and should therefore be interpreted cautiously. For the sample of 533 children, 57.8% were male and 42.2% were female. The majority (51.2%) were adolescents ages 13 – 17 years, with 25.7% school-aged, and 20.8% preschool. A small percentage (2.3%) was ages 18 – 21. Results are illustrated in Table 9. Table 9 – Ontario Children in Care – Total Sample Population

Male Female Total Ages 0 - 5 62 49 111

Ages 6 - 12 83 54 137

Ages 13 - 17 159 114 273

Ages 18 - 21 4 8 12

Total 308 225 533

The legal status of all children in the sample was a form of permanent care (for example, “crown ward” or “society ward”) or the child had already been in care for more than a year but the permanent legal status was still pending before the courts (designated as “interim care and custody”, but qualifying for inclusion in the AAR process). Sixteen percent of the children held this interim legal status, while 76% had permanent care status. Other legal status (unspecified) was indicated for the remaining 8% of the sample. The majority of children (69%) were placed in foster homes. Other placement categories were group homes (12%), kinship care or living with relatives (10%), living with an adoptive family (3%), living in a residential facility for mental health reasons (1.5%), or living with birth parents (0.5%). The final 4% were noted as living in some other arrangement, but the type of placement was not specified.

Total FASD (Diagnosed and Suspected Combined) Data regarding the diagnosis or suspicion of FASD was received regarding 56 children in the sample of 533, as illustrated in Table 10. This resulted in 56 children and youth ages 0 – 21 identified with diagnosed or suspected FASD, a 10.5% prevalence rate. The majority of children with FASD (66%) lived in a foster home setting, while 16% lived in a kinship placement, 16% lived in a group home, and 2% lived in a residential facility for children with mental health concerns. Almost all of the children had permanent legal status (88%), with 3% waiting for the courts to finalize their permanent legal status. A final 9% had “other” recorded as the legal status.

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Table 10 – Ontario Children in Care Sample with Diagnosed and Suspected FASD (Combined) Chart 3 compares the number of children with FASD (diagnosed and suspected combined) in each age group to the total number of children in care in each age group for the sample of 533 children.

Chart 3 – Ontario Children with FASD and Total Child in Care Sample Population

3 / 111 20 / 137 33 / 273 0 / 12 56 / 533

Due to the very small subsample of children with FASD, the breakdown between diagnosed and suspected FASD is not presented.

Summary

Considerable methodological challenges were encountered in the attempt to estimate the prevalence of FASD affecting children in care in Ontario. Without a centralized database or a common approach to data collection across agencies, the strategy to utilize a uniform process through the Ontario Looking After Children with a sample of all children requiring an AAR between December 1, 2012 and March 31, 2013 presented a more standardized method of data collection. Unfortunately, data were received from a small number of CASs, which greatly restricts the generalizability of the findings. In addition, it is presumed that AARs were not submitted for all children who may have required one, as there is no centralized method to determine how many AARs were expected during the study timeframe. Certainly, as data was received from agencies, there was evidence of some confusion about whether AARs needed to be submitted to the study for those children who did not have FASD, and efforts were made to solicit these missing AARs in retrospect, which may have contributed to the number missing. Despite these challenges, information was received for 533 children, ages 0 – 21, through this methodology, with 56 identified as having diagnosed or suspected FASD according to the study definitions, which differed from the typical way that questions about FASD were asked in the AAR. Consequently, it is difficult to compare the prevalence results from this study to other FASD data from ONLAC studies, as the definitions utilized were not the same. In this sample, the prevalence rate was 10.5%.

Male Female Total Ages 0 - 5 3 0 3

Ages 6 - 12 11 9 20

Ages 13 - 17 17 16 33

Total 31 25 56

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DISCUSSION This study examined the prevalence of FASD affecting children in care in Alberta, Manitoba and Ontario, using a common definition of “diagnosed” and “suspected” FASD. The research also endeavoured to follow a similar methodology in each province, by utilizing existing centralized databases to take advantage of demographic data collected by the jurisdiction on a routine basis. For Alberta and Manitoba, which each have centralized child welfare information systems used by all agencies, the methodology mainly involved asking case managers to update the client records for each client who had diagnosed or suspected FASD according to the study definitions (articulated earlier). For Ontario, which does not have a centralized child welfare database, the Ontario Looking After Children (ONLAC) process provided a common data submission process that involved all Ontario Children’s Aid Societies and could be sampled, accompanied by asking case managers to also complete a brief supplement for those children who had diagnosed or suspected FASD, as per the study definitions.

Despite the efforts to achieve some uniformity in study methodology across jurisdictions, it is important to refrain from comparisons across the three participating provinces in the prevalence rates derived in this study. Each province has slightly different child welfare legislation, definitions, and practices, which affects which children come to the attention of a given child welfare system, which children are admitted to care, and how their legal and placement histories unfold while in care. Further, although Canadian diagnostic clinics are committed to following the Canadian Guidelines for FASD Diagnosis (Chudley, et al., 2005; Clarren, Lutke, & Sherbuck, 2011), it was not possible in this study to assess how the diagnosis of FASD was made for any individual child.

The results of this study are also limited by the availability of relevant data. Diagnostic capacity

is not available in some regions of the participating provinces, which may have limited the number of children who should have been screened and assessed for FASD in their communities. Existing child welfare information systems did not have complete FASD data already recorded, necessitating the cooperation of frontline case managers to update their records for those children who had diagnosed or suspected FASD. Finding time to complete additional data entries or submit supplemental paperwork on top of work that is often crisis-oriented can be a formidable challenge, which may have limited the number of children’s files that were updated. Finally, the active use of database information systems by social work practitioners is a relatively new phenomenon in casework, which may contribute to inexperience or de-prioritization in using the database directly. Consequently, the prevalence rates identified in this study are considered to be an underestimation. In Alberta, 699 children out of the provincial population of 6,767 children in care from the ten Child and Family Services Authorities were identified in the provincial information system as having either diagnosed or suspected FASD, for a prevalence rate of 10.3%. This rate was considered to be an underestimation, as the study occurred shortly after each region had transitioned from one information system to another. Caseworkers were also reportedly experiencing considerable workload challenges during the timeframe of the study, which may have impacted their ability to update their case records in the information system within the established time frame. In Manitoba, 1,021 children out of the provincial population of 8,323 children in care from 22 of the 25 child and family services agencies, as well as the centralized intake agency in Winnipeg, were recorded in the provincial information system as having either diagnosed or suspected FASD, for a prevalence rate of 12.3%. Although the prevalence rate is lower than the 17% found in the 2005 study by Fuchs, et al., the current study depended upon case managers updating their records via either data

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entry or submitting paper data collection forms, whereas the former study collected data through a paper file review by two research associates. Workload and competing priorities were identified as barriers that prevented social workers from providing updated data for this study. Consequently, the prevalence rate of FASD for Manitoba’s children in care is also considered to be an underestimation. Due to the lack of a centralized information system for child welfare in Ontario, a sampling methodology was required. It was based on children who had been in permanent care for at least one year and who were flagged for completion of the Assessment and Action Record (AAR) through the ONLAC initiative between December 1, 2012 and March 31, 2013. Thirteen Children’s Aid Societies participated, submitting AARs and supplemental information about FASD for 533 children. In this sample of 533 children, 56 were identified as having diagnosed or suspected FASD, for a prevalence rate of 10.5%. This prevalence rate is also considered to be an underestimation, due to many limitations. First, less than one third of the Ontario CASs participated in the study. Those who did participate volunteered to do so, and therefore did not represent a cross-section of agencies based on size or geographic location. The sample only included children who had attained (or were in the process of attaining) permanent legal status and had been in care for at least one full year, eliminating from the study children from other legal statuses or who had been in care for shorter duration. Finally, it was not possible to determine how many children from the thirteen participating agencies should have had an AAR completed during the study timeframe, whether children who had FASD or those who did not (which would confirm the size of the sample with better accuracy in order to establish a prevalence rate with more confidence). Despite these limitations, the prevalence rates found in this study confirm the necessity for child welfare agencies to plan for the specialized needs of children in care with FASD. Even at the under-estimation of 10% of any group of children in care, there are a significant number of children who need skilled caregivers and resources to assist them in their journey to adulthood and emancipation from care. While these results point to the responsibilities facing child welfare agencies to plan for the needs of children in care with FASD, the importance of transitioning young people with FASD to adult services after discharge from care must also be emphasized. RECOMMENDATIONS FASD remains a significant concern affecting children in care. More work is necessary to develop baseline prevalence rates to better understand the full extent of the condition as it affects children in care. This study furthers this work by testing the feasibility of utilizing child welfare information databases to measure the prevalence of FASD in three provinces in Canada. It also demonstrates the importance of using common definitions across jurisdictions to achieve as much consistency in the results as possible.

The efforts of this study to estimate the prevalence of FASD affecting children in care in three provinces point to both the opportunities and challenges in using child welfare information systems as the source of data. Administrative databases are current priorities of child welfare systems in Canada and elsewhere, and therefore provide an important opportunity for understanding the population receiving child welfare services and their needs in order to inform policy and service delivery (Drake & Jonson-Reid, 1999). The authors state “evaluating policy changes requires descriptive data and longitudinal tracking of individual service utilization patterns, both of which are major strengths of administrative data. In child welfare, we therefore have a close alignment between the ability to access administrative data and the utility of that data” (p. 313).

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However, in order to make appropriate use of information about clients involved with the child

welfare system, social workers must see value in maintaining updated, accurate records. Drake and Jonson-Reid (1999) note that “a database is only a collection of inputs from field workers and is therefore dependent upon their conscientiousness. This may be difficult to achieve when workers see no real value in the input work that they do. In this way, administrators and researchers are dependent upon buy-ins from practitioners” (p. 314). Kufeldt, Simard, and Vachon (2000) echo this message in relation to the Looking After Children data, asserting that management needs to convey to staff exactly how the aggregate results derived from the database are used to generate positive change for children and families. In particular, supervisors are mentioned as key supports to their staff in ensuring that information is collected and updated to facilitate case planning at both the individual and group level.

The results of this study set the stage for future replication following similar methodology,

which was also one of the project’s goals. With the insights gained through this research, it is recommended that each of the three provinces repeat the study in the near future, attending to some of the barriers that encumbered caseworkers in this iteration of the study to ensure more complete data entry. Variations of the study could also be conducted with samples in each province, complemented by a detailed physical file examination to add credibility to the results derived from the administrative database.

Given that common definitions of FASD are critical in measuring prevalence consistently, it is also recommended that the administrative databases in each province incorporate the definitions of diagnosed and suspected FASD utilized in this study. This will help to ensure that the data entered in the future will be based on more uniform understanding of what constitutes diagnosed or suspected FASD. Additionally, as Ontario draws nearer to the establishment of its first centralized database, attention should be paid to ensuring that FASD is a variable that can be captured in the information system, again based on the definitions utilized in this study. Finally, establishing a national perspective of the extent of FASD affecting children in care is an important component of understanding the broader population-level prevalence of FASD. Prevalence rates must include both the population-level of impact of FASD as well as the higher prevalence rate affecting populations at risk. Both ends of the continuum contribute to our understanding of the occurrence of FASD and its impact in different aspects of Canadian society. The responsibilities of child welfare agencies to care for one group who is at higher risk of FASD (that is, children in care) compels child welfare systems to determine the prevalence rates of children in care with FASD and plan accordingly to meet their specialized needs. Conclusion Determining the prevalence of FASD in Canada is a challenge of critical importance (Healthy Child Manitoba, 2012). The costs borne by the individual affected by FASD, by the family members of that individual, and by society at large are significant (Poplova, Stade, Lange, Bekmuradov, & Rehm, 2012). In 2013, the Canadian federal government committed to funding a national prevalence project studying elementary school children to investigate the prevalence of FASD at a population level. National prevalence rates will aid in our understanding of the impact of FASD in Canadian society.

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While population-level prevalence studies are important, the research is already clear that some groups are at higher risk of FASD than others (Abel, 1995; May, 2011; Philp, 2000). Children in child welfare care, as one of those high risk populations (Steinhausen, Willms, & Spohr, 1993; Besharov, 1994), place additional demands on child welfare agencies who support and oversee their care needs. Estimating the prevalence of FASD affecting children in care is necessary to ensure that child welfare agencies are prepared to meet the needs of children in care with FASD through resources, programs, supports to caregivers, training to staff, and policies that facilitate their development into adulthood and emancipation from care. This study demonstrates some of the current challenges and possibilities in measuring the prevalence of FASD affecting children in care, utilizing a combination of existing technology through child welfare databases and updated data from child welfare case managers who are familiar with the special needs of children in care on their caseloads. The research demonstrated both the strengths and limitations of this approach to prevalence estimation and points to future strategies to develop a more complete picture of children in care affected by FASD across Canada.

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REFERENCES

Aase, J. (1994). Clinical recognition of FAS: Difficulties of detection and diagnosis. Alcohol, Health and Research World, 18(1), 5-9.

Abel, E. L. (1995). An update on incidence of FAS: FAS is not an equal opportunity birth defect. Neurotoxicology and Teratology, 17, 437-443.

Abel, E. L., & Hannigan, J. H. (1995). Maternal risk factors in Fetal Alcohol Syndrome: Provocative and permissive influences. Neurotoxicology and Teratology, 17, 445-462.

Alberta Health and Wellness. (2000). Health is everyone’s business: A snapshot of some of Alberta’s wellness initiatives. Edmonton, AB.

Aronson, J. E. (2000). Alcohol-related disorders and children adopted from abroad. In R. P. Barth, M. Freundlich, & D. Brodzinsky (Eds.), Adoption and prenatal alcohol and drug exposure, pp. 147-169. Washington, DC: Child Welfare League of America.

Asante, K. O., & Nelms-Matzke, J. (1985). Report on the survey of children with chronic handicaps and fetal alcohol syndrome in the Yukon and northwest British Columbia. Whitehorse, YT: Council for Yukon Indians.

Autti-Ramo, I., Fagerlund, A., Ervalahti, N., Loimu, L., Korkman, M., & Hoyme, H. E. (2005). Fetal alcohol spectrum disorders in Finland: Clinical delineation of 77 older children and adolescents. American Journal of Medical Genetics, 140A, 137-143.

Bailey, S., Thoburn, J., & Wakeham, H. (2002). Using the ‘Looking After Children’ dimensions to collect aggregate data on well-being. Child and Family Social Work, 7, 189-201.

Barr, H. M., & Streissguth, A. P. (2001). Identifying maternal self-reported alcohol use associated with fetal alcohol spectrum disorders. Alcoholism: Clinical and Experimental Research, 25(2), 283-287.

Besharov, D. (1994). When drug addicts have children: Rethinking child welfare’s response. Washington: Child Welfare League of America.

Besinger, B. A., Garland, A. F., Litrownik, A. J., & Landsverk, J. A. (1999). Caregiver substance abuse among maltreated children placed in out-of-home care. Child Welfare, 78(2), 221-239.

Blackstock, C. (2007). Aboriginal children, families and communities. In the Child Welfare League of Canada (Ed.), The welfare of Canadian children: It’s our business. A collection of resource papers for a healthy future for Canadian children and families (pp. 83-95). Ottawa, ON: Child Welfare League of Canada.

Blackstock, C., Prakash, T., Loxley, J., & Wien, F. (2005). Wen: de: We are coming to the light of day. Ottawa, ON: First Nations Child and Family Caring Society.

Blackstock, C., Trocmé, N., & Bennett, M. (2004). Child maltreatment investigations among Aboriginal and non-Aboriginal families in Canada. Violence Against Women, 10(8), 901-916.

Brownell, M. D., & Jutte, D. P. (2013). Administrative data linkage as a tool for child maltreatment research. Child Abuse & Neglect, 37, 120-124.

Burd, L., Martsolf, J. T., & Klug, M. (1996). Children with fetal alcohol syndrome in North Dakota: A case control study utilizing birth certificate data. Addiction Biology, 1, 181-189.

Burge, P. (2007). Prevalence of mental disorders and associated variables among Ontario children who are permanent wards. The Canadian Journal of Psychiatry, 52(5), 305-314.

Burnside, L. (2011). Prevalence of Fetal Alcohol Spectrum Disorder: A Literature Review. Prepared for PHAC Tri-Province FASD Project. Available at www.fasdchildwelfare.ca.

Canadian Child Welfare Research Portal. (2008). CIS frequently asked questions (FAQs). Available at: http://cwrp.ca/cis-2008/faqs

27

Chasnoff, I. J. (2011). Children prenatally exposed to alcohol: Comments on Astley, O’Brien and Mattson, and O’Connor. Encyclopedia on Early Childhood Development. Retrieved from: http://www.child-encyclopedia.com/documents/ChasnoffANGxp1.pdf

Chudley, A. E. (2008). Fetal alcohol spectrum disorder: Counting the invisible – mission impossible? Archives of Disease in Childhood, 93, 721-722.

Chudley, A. E., Conry, J. L., Loock, C., Rosales, T., & LeBlanc, N. (2005). Fetal alcohol spectrum disorder: Canadian guidelines for diagnosis. Canadian Medical Association Journal, 172(5 Suppl), S2-S21.

Clarke, M., Tough, S. C., Hicks, M., & Clarren, S. (2005). Approaches of Canadian providers to the diagnosis of fetal alcohol spectrum disorders. Journal of FAS International, 3, e3.

Clarren, S., & Lutke, J. (2008). Building clinical capacity for fetal alcohol spectrum disorder diagnoses in western and northern Canada. Canadian Journal of Clinical Pharmocology, 15, 223-237.

Clarren, S. K., Lutke, J., & Sherbuck, M. (2011). The Canadian Guidelines and the interdisciplinary clinical capacity of Canada to diagnose Fetal Alcohol Spectrum Disorder. Journal of Population Therapeutics and Clinical Pharmacology, 18(3), 494-499.

Coles, C. (1994). Critical periods for prenatal alcohol exposure: Evidence from animal and human studies. Alcohol Health & Research World, 18, 22-29.

Collins-Camargo, C., Shackelford, K., Kelly, M., & Martin-Galijatovic, R. (2011). Collaborative research in child welfare: A rationale for rigorous participatory evaluation designs to promote sustained systems change. Child Welfare, 90(2), 69-85.

Commission to Promote Sustainable Child Welfare. (2012). A new approach to accountability and system management: Report and recommendations. Available at: http://www.children.gov.on.ca/htdocs/English/documents/topics/childrensaid/commission/2012sept-Accountability_system_management.pdf

Coyne, K. L., De Costa, C. M., Heazlewood, R. J., & Newman, H. C. (2008). Pregnancy characteristics of women giving birth to children with fetal alcohol syndrome in Far North Queensland. Australian and New Zealand Journal of Obstetrics and Gynaecology, 48, 240-247.

Curtis, P. A., & McCullough, C. (1993). The impact of alcohol and other drugs on the child welfare system. Child Welfare, 72(6), 533-542.

Department of Health and Human Services. (1999). Blending perspectives and building common ground: A report to Congress on substance abuse and child protection. USA.

Dore, M., Doris, J. M., & Wright, P. (1995). Identifying substance abuse in maltreating families: A child welfare challenge. Child Abuse & Neglect, 19, 531-543.

Drake, B., & Jonson-Reid, M. (1999). Some thoughts on the increasing use of administrative data in child maltreatment research. Child Maltreatment, 4(4), 308-315.

Elliott, A. J., & Hanson, J. D. (2006). Fetal alcohol syndrome in South Dakota. South Dakota Medicine Journal (August 2006). Retrieved from: http://www.sdsma.org/memberdocs/SD%20Medicine/Aug06/Journal-Elliott.pdf

Elliott, E. J., Payne, J., Morris, A., Haan, E., & Bower, C. (2008). Fetal alcohol syndrome: A prospective national surveillance study. Archives of Disease in Childhood, 93, 732-737.

Fallon, B., Trocmé, N., Fluke, J., MacLaurin, B., Tonmyr, L., & Yuan, Y. (2010). Methodological challenges in measuring child maltreatment. Child Abuse & Neglect, 34, 70-79.

Fluke, J. D., Chabot, M., Fallon, B., MacLaurin, B., & Blackstock, C. (2010). Placement decisions and disparities among aboriginal groups: An application of the decision making ecology through multi-level analysis. Child Abuse & Neglect, 34, 57-69.

Fuchs, D., Burnside, L., Marchenski, S., & Mudry, A. (2005). Children with disabilities receiving services from child welfare agencies in Manitoba. Retrieved from http://www.cecw-cepb.ca/sites/default/files/publications/en/DisabilitiesManitobaFinal.pdf

28

Fuchs, D., Burnside, L., Marchenski, S., & Mudry, A. (2007). Children with FASD involved with the Manitoba child welfare system. Retrieved from http://www.cecw-cepb.ca/sites/default/files/publications/en/FASD_Final_Report.pdf

Fuchs, D., Burnside, L., Marchenski, S., & Mudry, A. (2008). Transition out-of care: Issues for youth with FASD. Retrieved from http://www.cecw-cepb.ca/

Fuchs, D., Burnside, L., Marchenski, S., Mudry, A. & De Riviere, L. (2008). Economic impact of children in care with FASD, Phase 1: The cost of children in care with FASD in Manitoba. Retrieved from http://www.cecw-cepb.ca/publications/590

Fuchs, D., Burnside, L., DeRiviere, L., Brownell, M., Marchenski, S., Mudry, A., & Dahl, M. (2009). The economic impact of children in care with FASD and parental alcohol issues. Phase II: Costs and service utilization of health care, special education, and child care. Toronto, ON: Centre of Excellence for Child Welfare.

Fuchs, D., Burnside, L., Reinink, A., & Marchenski, S. (2010). Bound by the Clock: The Voices of Manitoba Youth in Care with FASD. Retrieved from http://www.cecw-cepb.ca/publications/2138

Gardner, J. D. (1997). Fetal alcohol syndrome: Recognition and intervention. American Journal of Maternal and Child Nursing, 22(6), 318-322.

Gladstone, J., Levy, M., Nulman, I., & Koren, G. (1997). Characteristics of pregnant women who engage in binge alcohol consumptions. Canadian Medical Association Journal, 15, 789-794.

Goransson, M., Magnusson, A., Bergman, H., Rydberg, U., & Heilig, M. (2003). Fetus at risk: Prevalence of alcohol consumption during pregnancy estimated with a simple screening method in Swedish antenatal clinics. Addiction, 98, 1513-1520.

Gough, P. (2005). Ontario’s child welfare system. CECW Information Sheet #31E. Toronto, ON: University of Toronto Faculty of Social Work.

Gough, P. (2006a). Alberta’s child welfare system. CECW Information Sheet #46E. Toronto, ON: University of Toronto Faculty of Social Work.

Gough, P. (2006b). Manitoba’s child welfare system. CECW Information Sheet #34E. Toronto, ON: University of Toronto Faculty of Social Work.

Guerri, C. (1998). Neuroanatomical and neurophysiological mechanisms involved in central nervous system dysfunctions induced by prenatal alcohol exposure. Alcoholism: Clinical and Experimental Research, 22, 304-312.

Guilfoyle, G. (2006). Creating a foundation for FASD diagnostic capacity: A project of the FASD stakeholders for Ontario diagnostic working group. Available at: http://www.fasdontario.ca/cms/sites/default/files/FASD%20Diagnostic%20Capacity.pdf

Habbick, B. F., Nanson, J. L., Snyder, R. E., Casey, R. E., & Schulman, A. L. (1996). Fetal alcohol syndrome in Saskatchewan: Unchanged incidence in a 20-year period. Canadian Journal of Public Health, 87, 204-207.

Health Canada. (2000). Best practices: Fetal alcohol syndrome/fetal alcohol effects and the effects of other substance use during pregnancy. Ottawa. The Canadian Child and Adolescent Psychiatry Review, 12(3), 77-80.

Healthy Child Manitoba. (2012). Position paper: Developing a national prevalence plan for FASD in Canada. Available at: http://www.canfasd.ca/wp-content/uploads/2013/02/FASD_Prevalence_Position_Paper_final_March2012.pdf

Kufeldt, K., Simard, M., & Vachon, J. (2000). Looking after children in Canada: Final report. Available at: http://www.unb.ca/fredericton/arts/centres/mmfc/_resources/pdfs/team2000a.pdf

Larkby, C., & Day, N. (1997). The effects of prenatal alcohol exposure. Alcohol Health and Research World, 21(3), 192-197.

Lemay, R., & Ghazal, H. (2007). Looking after children: A practitioner’s guide. Ottawa, ON: University of Ottawa Press.

29

May, P. A. (2011). Researching the prevalence and characteristics of FASD in international settings. In

E. P. Riley, S. Clarren, J. Weinberg, & E Jonsson (Eds), Fetal alcohol spectrum disorder: Management and policy perspectives of FASD (pp. 17-25). Weinheim, Germany: Wiley-VCH Verlag & Co.

May, P. A., & Gossage, J. P. (2001). Estimating the prevalence of Fetal Alcohol Syndrome: A summary. Alcohol Research & Health, 25(3), 159-167.

May, P. A., Gossage, J. P., Kalberg, W. O., Robinson, L. K., Buckley, D., Manning, M., & Hoyme, H. E. (2009). Prevalence and epidemiologic characteristics of FASD from various research methods with an emphasis on recent in-school studies. Developmental Disabilities Research Reviews, 15, 176-192.

May, P. A., Gossage, J. P., Marais, A. S., Hendricks, L., Snell, C., Tabachnick, B. G., Stellavato, C., Buckley, D. G., Brooke, L., & Viljoen, D. L. (2008). Maternal risk factors for fetal alcohol syndrome and partial fetal alcohol syndrome in South Africa: A third study. Alcoholism: Clinical and Experimental Research, 32, 738-753.

McNichol, T., & Tash, C. (2001). Parental substance abuse and the development of children in family foster care. Child Welfare, 80(2), 239-256.

Miller, M., & Flynn, R. (2013). Looking after children in Ontario: Good parenting, good outcomes. Ontario provincial report year 12. Available at: https://wm.shaw.ca/service/home/~/OnLAC%20Ontario%20Year%2012%20Provincial%20Report.pdf?auth=co&loc=en_CA&id=62493&part=2

Nanson, J. (1997). Binge drinking during pregnancy: Who are the women at risk? Canadian Medical Association Journal, 156(6), 807-808.

Nanson, J. (2003). Fetal alcohol syndrome/effect and its impact on psychosocial child development: Comments on Sandra and Joseph Jacobson and Susan Astley. Encyclopedia of Early Childhood Development, 1-9. Retrieved from: http://www.child-encyclopedia.com/documents/ NansonANGxp.pdf

National Technical Assistance and Evaluation Center. (2010). A closer look: Accountability. Available at: https://www.childwelfare.gov/pubs/acloserlook/accountability/accountability.pdf

Nesbit, W., Philpott, D., Jeffery, G. ,& Cahill, M. (2004). Fetal alcohol syndrome in First Nations communities: Educational facets. In W.C. Nesbit (Ed.), Cultural Diversity and Education: Interface Issues (pp. 139-172). St. John’s, NL: Memorial University.

North Carolina Division of Social Services and the Family and Children’s Resource Program. (2004). Using data to enhance child welfare practice. Children’s Services Practice Notes, 9(4). Available at: http://www.practicenotes.org/vol9_no4.htm

O’Donnell, M., Scott, D., & Stanley, F. (2008). Child abuse and neglect – is it time for a public health approach? Australian and New Zealand Journal of Public Health, 32(4), 325-330.

O’Donnell, M., Nassar, N., Leonard, H. M., Mathews, R. P., Patterson, Y. G., & Stanley, F. J. (2010). The use of cross-jurisdictional population data to investigate health indicators of child maltreatment. The Medical Journal of Australia, 193(3), 142-145.

Ontario Ministry of Children and Youth Services. (2013). Results-based briefing book 2012-13. Available at: http://www.children.gov.on.ca/htdocs/English/documents/about/Results_2012-2013.pdf

Ospina, M., & Dennett, L. (2013). Systematic review on the prevalence of Fetal Alcohol Spectrum Disorders. Edmonton, Alberta: Institute of Health Economics.

Pacey, M. (2009). Fetal alcohol syndrome & fetal alcohol spectrum disorder among Aboriginal peoples: A review of prevalence. British Columbia: National Collaborating Centre for Aboriginal Health.

Parton, N. (2009). Challenges to practice and knowledge in child welfare social worker: From the ‘social’ to the ‘informational’? Children and Youth Services Review, 31(7), 715-721.

30

Philp, M. (2000, November 5). The promise of hope. The Globe and Mail, pp. A16-A17. Poplova, S., Stade, B., Lange, S., Bekmuradov, D., & Rehm, J. (2012). Economic impact of Fetal Alcohol

Syndrome (FAS) and Fetal Alcohol Spectrum Disorders (FASD): A systematic literature review. Ottawa, ON: Centre for Addiction and Mental Health. Available at: http://knowledgex.camh.net/reports/Documents/economic_impact_fas_litreview12.pdf

Robinson, G. C., Conry, J. L., & Conry, R. F. (1987). Clinical profile and prevalence of fetal alcohol syndrome in an isolated community in British Columbia. Canadian Medical Association Journal, 137, 203-207.

Sampson, P. D., Streissguth, A. P., Bookstein, F. L., Little, R. E., Clarren, S. K., Dehaene, P., Hanson, J. W., & Graham, Jr., J. M. (1997). Incidence of fetal alcohol syndrome and prevalence of alcohol-related neurodevelopmental disorder. Teratology, 56, 317-326.

Sandor, S., Smith, D., MacLeod, P., Tredwell, S., Wood, B., & Newman, D. E. (1981). Intrinsic defects in the fetal alcohol syndrome: Studies of 76 cases from BC and the Yukon. Neurobehavioural Toxicology and Teratology, 3, 145-152.

Semidei, J., Radel, L. F., & Nolan, C. (2001). Substance abuse and child welfare: Clear linkages and promising responses. Child Welfare, 80(2), 109-128.

Spohr, H. L., Willms, J., & Steinhausen, H. C. (1994). The fetal alcohol syndrome in adolescence. Acta Paediatrica, 404, 19-26.

Steinhausen, H. C., Willms, J. & Spohr, H. L. (1993). Long-term psychopathological and cognitive outcomes of children with fetal alcohol syndrome. Journal of the American Academy of Child and Adolescent Psychiatry, 32(5), 990-995.

Streissguth, A. P., Aase, J. M., Clarren, S., Randels, S., LaDue, R. A., & Smith, D. F. (1991). Fetal alcohol syndrome in adolescents and adults. Journal of American Medical Association, 265, 1961-1967.

Streissguth, A. P., Bookstein, F. L., Barr, H. M., Sampson, P. D., O’Malley, K., & Young, J. K. (2004). Risk factors for adverse life outcomes in fetal alcohol syndrome and fetal alcohol effects. Developmental and Behavioral Pediatrics, 25(4), 228-238.

Streissguth, A. P., Sampson, P. D., Olson, H.C., Bookstein, F. L., Barr, H. M., Scott, M., Feldman, J., & Mirsky, A. F. (1994). Maternal drinking during pregnancy: Attention and short-term memory in 14-year-old offspring. Alcoholism: Clinical and Experimental Research, 18, 202-218.

Thomas, J. D., Warren, K. R., & Hewitt, B. G. (2010). Fetal alcohol spectrum disorders: From research to policy. Alcohol Research & Health, 33, 118-126.

Trocmé, N., MacLaurin, B., Fallon, B., Shlonsky, A., Mulcahy, M., & Esposito, T. (2009). National child welfare outcomes indicator matrix (NOM). Montreal, QC: McGill University – Centre for Research on Children and Families.

Uban, K. A., Bodnar, T., Butts, K., Sliwowska, J. H., Comeau, W., & Weinberg, J. (2011). Direct and indirect mechanisms of alcohol teratogenesis: Implications for understanding alterations in brain and behavior in FASD. In E. P. Riley, S. Clarren, J. Weinberg, & E. Jonsson (Eds.), Fetal alcohol spectrum disorder: Management and policy perspectives of FASD (pp. 73-126). Weinheim, Germany: Wiley-VCH Verlag & Co.

United States General Accounting Office. (2003). Child welfare: Most states are developing state-wide information systems, but the reliability of child welfare data could be improved. Available at: http://www.gao.gov/assets/240/239193.pdf.

United States General Accounting Office. (2004). Child and family services reviews: Better use of data and improved guidance could enhance Health and Human Services’ oversight of state performance. Available at: www.gao.gov/cgi-bin/getrpt?GAO-04-333.

31

Van Bibber, M. (1993). FAS amongst aboriginal communities in Canada: A review of existing epidemiological research and current preventative and intervention approaches – An information legacy of the Royal Commission on Aboriginal Peoples. Ottawa, ON: Libraxus, CD-ROM.

Waldfogel, J. (2000). Child welfare research: How adequate are the data? Children and Youth Services Review, 22, 705-741.

Warren, K. R., & Foudin, L. L. (2001). Alcohol-related birth defects – The past, present, and future. Alcohol Research & Health, 25(3), 153-158.

Williams, R. J., Odaibo, F. S., & McGee, J. M. (1999). Incidence of fetal alcohol syndrome in northeastern Manitoba. Canadian Journal of Public Health, 90(3), 192-194.

Young, N., Gardner, S., & Dennis, K. (1998). Responding to alcohol and other problems in child welfare. Washington, DC: CWLA Press.

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September 20, 2012 Dear Social Worker, RE: Tri-Province FASD Prevalence Project – Children in Care with FASD The Tri-Province FASD Prevalence Project is a collaborative initiative between Ontario, Manitoba, and Alberta, building on the research into FASD affecting children in care that was conducted in Manitoba by Don Fuchs and Linda Burnside, beginning in 2004. This current project, funded by the Public Health Agency of Canada, is intended to determine the number of children currently in care who have been diagnosed with FASD (or are in the process of being assessed for FASD) in the three partner provinces. In 2004, our study on Manitoban children in care with disabilities found that 11% of all children in care had been diagnosed with FASD and a further 6% were in the process of being assessed. Since that time, the capacity for diagnosing FASD has increased in Manitoba and many practitioners are more aware of the indicators of FASD that lead to referring children for assessment. Knowing how many children in care have been diagnosed with FASD helps child welfare agencies to determine how many children require specialized supports, what kinds of services they may need (according to age), how many staff and foster parents are required to deliver specialized services, what kind of funding is needed to meet the needs of children with FASD, and how many youth with FASD will need adult supports upon reaching age of majority.

This project has been reviewed by the Director, Child, Youth and Family Enhancement Act, in the Child Intervention Program Quality & Supports Division of Alberta Human Services. Information was also presented to the Provincial Enhancement Table which includes representatives from the Child and Family Services Authorities (CFSAs) and the Delegated First Nation Agencies (DFNAs). All parties have given consent to participate in this project. Processes are underway to also include the participation of all CFSAs and DFNAs throughout Alberta as per their migration to ISIS through to 2013, to capture a full provincial perspective on the prevalence of FASD affecting children and youth in care.

Your Role In order to assist us in the collection of data about children and youth in care who have been diagnosed with FASD or who may be in the process of being assessed for FASD, we are asking all social workers in your CFSA or DFNA to do the following between October 1 and October 31, 2012:

1. Determine which children and youth in care, as of September 30, 2012 on the caseload for which you are case manager, have FASD using the following criteria:

a) Diagnosed with FASD by a qualified practitioner with written documentation on file supporting the diagnosis.

b) Suspected of having FASD because the child is in the process of being assessed by a qualified practitioner, or has already been assessed but a formal diagnosis is not possible due to the inability to confirm maternal substance use during pregnancy.

521 Tier Building Winnipeg, Manitoba Canada R3T 2N2 Telephone (204) 474-7050 Fax (204) 474-7594 Social_Work@umanitoba.ca

Faculty of Social Work

Appendix A

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Please note: Although children may be suspected of having FASD by teachers, foster parents, or other practitioners, at this time, we are only tracking those children who have either been formally diagnosed or are in the process of being assessed, as per the definitions provided above.

2. For those children who have been diagnosed with or suspected of having FASD, please update ISIS. In ISIS, the medical conditions field is selectable with FASD and Pre-Natal Exposure to alcohol or drugs as options. If a diagnosis has been provided, there is the ability to enter the start and end dates for the diagnosis and who made the diagnosis.

Information about FASD can be entered by selecting “Developmental Conditions/Impairments”. The options to select from in this field as it pertains to FASD include:

Fetal Alcohol Spectrum Disorder

Describes a full range of permanent birth defects that may result from maternal consumption of alcohol during pregnancy including, Partial Fetal Alcohol Syndrome (PFAS), Alcohol-Related Neurodevelopmental Disorder (ARND), Alcohol-Related Birth Defects (ARBD), and Fetal Alcohol Effect

Pre-Natal Exposure Alcohol

A pattern of mental and physical defects that can develop in a fetus when a woman drinks alcohol during pregnancy

Pre-Natal Exposure Drugs

The effects on brain development when a woman exposes a fetus to drugs during pregnancy

In the “Diagnosis Details” window, specific information about the type of FASD (PFAS, ARND,

ARBD or FAE) can be entered, if known, in the “Diagnosis” field. Additionally, information about who made the diagnosis, the date of diagnosis, whether the diagnosis was verified can also be entered.

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For the purposes of this study:

If the child has been diagnosed with FASD, please select “Fetal Alcohol Spectrum Disorder” in the “Medical Conditions” window, enter the type of FASD in “Diagnosis Details” window (if known), and enter information about who made the diagnosis, the date of diagnosis, and whether the diagnosis was verified.

If the child is currently in the process of being formally assessed for FASD (as per our definition of suspected FASD described above), please select “Fetal Alcohol Spectrum Disorder” in the “Medical Conditions” window. In the “Diagnosis Details” window, please enter the word “suspected” in the “Diagnosis” field.

3. As this study will also be collecting basic demographic, non-identifying information about children and youth in care who have been diagnosed with or are suspected of having FASD so that the prevalence rate can be described in relation to age groups, gender, legal status and placement status, please also update ISIS in the following fields if the information is not entered or not current:

a. Gender b. Date of Birth c. Cultural Status

d. Legal Status e. Placement

If you have questions about the FASD diagnostic status of a child or how to interpret the file information

about diagnosis, or if you have any other questions about this project, please contact Linda Burnside, project co-lead, at linda@avocation-ccrt.org. If you have questions about the operation of ISIS during your data entry activity, please contact the ISIS Support Desk at 1 855 474 7243 during regular business hours.

The results of your data entry, and the data collected from areas across the project, will be analyzed

through the winter months, beginning in November 2012. Information will be reported at a provincial aggregate level, so no individual child, agency or authority will be identified in the prevalence rate. Further, each CFSA or DFNA may request specific information pertaining to its data. Final results of this project will be first shared with the Director, Child Youth and Family Enhancement Act in spring 2013 and will then be made available to the CFSAs and DFNAs.

Your assistance with this project is very important and is greatly appreciated! Additional information about this project is also described in the attached Project Overview document.

Again, if you have any questions about this project, please do not hesitate to ask by contacting Linda at linda@avocation-ccrt.org.

Thank you! Sincerely,

for/ Don Fuchs, PhD Project Co-Lead

Linda Burnside, PhD Project Co-Lead

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September 4, 2012 Dear Social Worker, RE: Tri-Province FASD Prevalence Project – Children in Care with FASD The Tri-Province FASD Prevalence Project is a collaborative initiative between Ontario, Manitoba, and Alberta, building on the research into FASD affecting children in care that was conducted in Manitoba by Don Fuchs and Linda Burnside, beginning in 2004. This current project, funded by the Public Health Agency of Canada, is intended to determine the number of children currently in care who have been diagnosed with FASD (or are in the process of being assessed for FASD) in the three partner provinces. In 2004, our study on Manitoban children in care with disabilities found that 11% of all children in care had been diagnosed with FASD and a further 6% were in the process of being assessed. Since that time, the capacity for diagnosing FASD has increased in Manitoba and many practitioners are more aware of the indicators of FASD that lead to referring children for assessment. Knowing how many children in care have been diagnosed with FASD helps child welfare agencies to determine how many children require specialized supports, what kinds of services they may need (according to age), how many staff and foster parents are required to deliver specialized services, what kind of funding is needed to meet the needs of children with FASD, and how many youth with FASD will need adult supports upon reaching age of majority. This project has been reviewed by the Standing Committee, the Child Protection Branch, the Metis Authority, and the agency directors of the Metis Authority child welfare agencies. All parties have given consent to participate in this project. Processes are underway to also secure the participation of all child welfare agencies in all four Authorities, to capture a full provincial perspective on the prevalence of FASD affecting children in care. Your Role In order to assist us in the collection of data about children in care who have been diagnosed with FASD or who may be in the process of being assessed for FASD, we are asking all social workers in the Metis Authority child welfare agencies to do the following between October 1 and October 31, 2012:

4. Determine which children in care, as of September 30, 2012 on the caseload for which you are case manager, have FASD using the following criteria:

c) Diagnosed with FASD by a qualified practitioner (in Manitoba, diagnoses are conducted by the Manitoba FASD Centre, formerly known as the Clinic for Alcohol and Drug Exposed Children or CADEC), with written documentation on file.

521 Tier Building Winnipeg, Manitoba Canada R3T 2N2 Telephone (204) 474-7050 Fax (204) 474-7594

Social_Work@umanitoba.ca

Faculty of Social Work

Appendix B

37

d) Suspected of having FASD because the child is in the process of being assessed by the Manitoba FASD Centre, or has been assessed by the Manitoba FASD Centre or by CADEC but a formal diagnosis is not possible due to the inability to confirm maternal substance use during pregnancy. Please note: Although children may be suspected of having FASD by teachers, foster parents, or other practitioners, at this time, we are only tracking those children who have either been formally diagnosed or are in the process of being assessed, as per the definitions provided above.

5. For those children who have been diagnosed with or suspected of having FASD, please update CFSIS in the Child Well-Being windows. Under “Person Disability”, there is a tab for Type of Disability.

Information about FASD can be entered by selecting “Cognitive/Intellectual”. The options to select from in the “Cognitive/Intellectual Disability” field as it pertains to FASD include:

a. FAS diagnosed b. Partial FAS c. ARND (Alcohol Related Neurological Disorder) d. Suspected FASD

6. As this study will also be collecting basic demographic, non-identifying information about children in care who have been diagnosed with or are suspected of having FASD so that the

38

prevalence rate can be described in relation to age groups, gender, legal status and placement status, please also update CFSIS in the following fields if the information is not entered or not current:

a. Gender b. Date of Birth c. Aboriginal Status d. Authority of Service e. Legal Status f. Placement

If you have questions about the FASD diagnostic status of a child or how to interpret the file information about diagnosis, or if you have any other questions about this project, please contact Linda Burnside, project co-lead, at linda@avocation-ccrt.org. If you have questions about the operation of CFSIS during your data entry activity, please contact the Help Desk at 204-945-3405 or toll-free at 1-800-338-7405 during regular business hours. The results of your data entry, and the data collected from other child welfare agencies across the project, will be analyzed through the winter months, beginning in November 2012. Information will be reported at a provincial aggregate level, so no individual child, agency or Authority will be identified in the prevalence rate. Further, each Authority will receive specific information pertaining to its agencies, as requested. Final results of this project will be first shared with the Standing Committee in March 2013 and will then be made available to all child welfare agencies. Your assistance with this project is very important, and is greatly appreciated! Additional information about this project is also described in the attached Project Overview document. Again, if you have any questions about this project, please do not hesitate to ask by contacting Linda at linda@avocation-ccrt.org. Thank you! Sincerely,

for/ Don Fuchs, PhD Project Co-Lead Linda Burnside, PhD Project Co-Lead

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Children in Care with FASD Information Profile – Manitoba Agency: Date:

Child’s Placement: □ On reserve □ Off reserve Child’s Initials (first/middle/surname): ____ ____ ____

Family’s Residence: □ On reserve □ Off reserve Funding Source: □ Federal □ Provincial

1. Gender: □ Male □ Female 2. Date of Birth: day / month / year

3. Aboriginal Status: (check one) 4. Authority of Service:

□ 1 = not determined □ 1 = First Nations Northern Authority

□ 2 = not Aboriginal □ 2 = First Nations Southern Authority

□ 3 = Treaty (status) □ 3 = General Authority

□ 4 = Metis □ 4 = Metis Authority

□ 5 = non-status □ 5 = not determined

□ 6 = Inuit

5. Legal Status: (check one)

□ 1 = not in care □ 2 = Petition filed for further order

□ 3 = Apprehension □ 4 = Temporary Ward

□ 5 = Permanent Ward (court) □ 6 = Permanent Ward (Voluntary Surrender)

□ 7 = Voluntary Placement Agreement □ 8 = Transitional Planning

□ 9 = unknown

Effective Date: day / month / year 6. Guardian Agency: 7. Supervising Agency: 8. Primary reason for coming into care: (check one)

□ 1 = Abandonment □ 2 = Desertion

□ 3 = Conditions of child □ 4 = Conditions of Parent

□ 5 = Conduct of child □ 6 = Conduct of Parent/Medical refusal

□ 7 = Voluntary Relinquishment □ 8 = Conduct of Parent/Other (unspecified)

□ 9 = Other □ 10 = Not in Care

□ 11 = Transfer in from MB agency □ 12 = Transfer in from out of province

□ 13 = unknown

9. Child’s Placement:

□ 1 = not in care □ 2 = Foster home

□ 3 = Foster home - specialized □ 4 = Shelter

□ 5 = Residential care □ 6 = Group home

□ 7 = Independent living □ 8 = Place of safety

□ 9 = Hotel □ 10 = Correctional facility

□11 = Health/Mental Health □ 12 = Own home/relative (non-pay)

□ 13 = Placement not known □ 14 = Out of province

10. FASD diagnosed: 11. FASD suspected:

□ 1 = FAS □ 1 = FAS

□ 2 = partial FAS □ 2 = partial FAS

□ 3 = ARND □ 3 = ARND

12. Diagnosed by: 13. Diagnosis date:

Appendix C

OnLAC LEAD HANDS AT EACH SOCIETY PLEASE FORWARD AT THE END OF DEC 2012 and JAN, FEB & MARCH 2013 THE COMPLETED: 2012-2013 FASD PREVALENCE ONTARIO AAR STUDY form to:

Deborah Goodman, Child Welfare Institute, CAS Toronto 30 Isabella St., Toronto, ON M4Y1N1

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November 24, 2012 To all Ontario Child Welfare Executive Directors, Directors of Service, Resource Managers and Society OnLAC Lead Hands

Dear Society,

RE: STUDY TO DETERMINE THE PREVALENCE OF FETAL ALCOHOL SPECTRUM DISORDER (FASD) IN CHILDREN/YOUTH IN CARE OF A CHILDREN’S AID SOCIETY This $700,000, three-year, Tri-Province FASD Project is a collaborative initiative between Ontario, Manitoba, and Alberta. It is led by Drs. Deborah Goodman (Child Welfare Institute, CAS Toronto), Don Fuchs (University of Manitoba), William Pelech (University of Calgary), Dorothy Badry (University of Calgary) and Ms. Sharon Long (Alberta Government). There are multiple parts and segments to this multi-year study. This letter relates to the part that aims to advance understanding of the prevalence of diagnosed or suspected FASD in children and youth in child welfare care. Funded by the Public Health Agency of Canada this study builds on the 2004 research into FASD affecting children in care that was conducted in Manitoba by Drs. Don Fuchs and Linda Burnside. FASD is a preventable brain disorder caused by maternal prenatal drinking of alcohol. Despite FASD being more prevalent than autism, Down syndrome, cerebral palsy, cystic fibrosis, SIDS and spina bifida combined, we still don’t have a clear picture of the prevalence of FASD. In a child welfare population FASD appears to range from 3% to over 50%. The costs of FASD to the youth, the caregiver, the family and community are significant with 2009 estimates of life-time care costs at one to five million dollars per child. This study will more rigorously and thoroughly determine the prevalence of FASD in a child welfare population in the three provinces. Findings will be used to inform practice, policy and funding needs to improve services and identify gaps. To ensure confidence in the findings we are using stringent criteria that include only child welfare children or youth who are in care and have been formally diagnosed with FASD by a qualified practitioner or are in the process of being assessed. In Ontario, the sample will only include children or youth whose AAR is completed between Dec.1st, 2012 to Mar. 31st, 2013. To help us collect the data about children and youth in care and identify those who do not have FASD and those that have been diagnosed with or suspected with FASD, the study team, with the approval of OACAS, the OnLAC Council and Dr. Flynn, is asking all Ontario Societies and their case workers to provide one added page of information about FASD for ALL children/youth in care in conjunction with the completion of the ONLAC Assessment and Action Record (AAR) between Dec. 1, 2012 to March 31, 2013.

Appendix D

OnLAC LEAD HANDS AT EACH SOCIETY PLEASE FORWARD AT THE END OF DEC 2012 and JAN, FEB & MARCH 2013 THE COMPLETED: 2012-2013 FASD PREVALENCE ONTARIO AAR STUDY form to:

Deborah Goodman, Child Welfare Institute, CAS Toronto 30 Isabella St., Toronto, ON M4Y1N1

41

We want to limit the burden on agencies and workers but still obtain the data needed to tell the story about FASD prevalence in a child-in-care population. To do this we are asking each Society to participate in following way,

1) Each society identify an agency lead that will be the FASD Prevalence Study Team link person; 2) Have each worker at each Society who completes the AAR on a child or youth between Dec.1st,

2012 to Mar. 31st. 2013 complete the one-page tool (see page 3 of this letter). This page has selected child/youth AAR data already reported but we ask that you repeat it plus answer two new additional short questions regarding FASD.

3) At the end of each study month (Dec., Jan, Feb., and Mar) the Society will mail the 1-page data sheets to Deb Goodman (see address below). Please note that no child names are collected, only non-identifying agency case numbers.

The FASD Prevalence Study Team will input all the data into SPSS. The 1-page AAR forms will then be forwarded back to the respective Society. If you have any questions regarding this study, please do not hesitate to contact me at 416 –924-4640 x 2792 or by email at dgoodman@torontocas.ca. On behalf of the FASD Prevalence study team leads, Drs. Don Fuchs and Linda Burnside, from the University of Manitoba, myself, and our other national investigators, we warmly thank you for your partnership and support in helping build and advance knowledge on a key child welfare issue: FASD prevalence. Sincerely,

Deborah Goodman, PhD. Director, Child Welfare Institute, Children’s Aid Society of Toronto Study Lead, PHAC Tri-Province FASD Study (2011-2014)

OnLAC LEAD HANDS AT EACH SOCIETY PLEASE FORWARD AT THE END OF DEC 2012 and JAN, FEB & MARCH 2013 THE COMPLETED: 2012-2013 FASD PREVALENCE ONTARIO AAR STUDY form to:

Deborah Goodman, Child Welfare Institute, CAS Toronto 30 Isabella St., Toronto, ON M4Y1N1

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2012-2103 FASD PREVALENCE STUDY ONTARIO AAR FORM: Data (1-page)

Q1. Child/Youth Initials (First and Last Name):

Q2. Child/Youth Official Agency File Number:

Q3. Child/Youth Gender: O Male O Female

Q4. Child/Youth Date of Birth: __ __ (day) __ __ (month) __ __ __ __ (year)

Q5. Child Welfare Worker Initials

Q6. Agency or Organization:

Q7. Date AAR Form Completed: __ __ (day) __ __ (month) __ __ __ __ (year)

Q8. Age Group of this AAR: O 18-21 years O 12-15 years O 5-9 years O 1-2 years

O 16-17 years O 10-11 years O 3-4 years O 0-12 months

Q9. Current Placement O Kinship Foster Care O Psychiatric Facility

O Foster home operated by child welfare O With Birth Parents O Group home operated by child welfare O Adoption Probation O Foster home- outside purchased care O With relatives (not foster) O Group home- outside purchased care O Custody/Detention O Children’s mental health- residential O Customary Care O Regular hospital (short-term) O Other

Q10. Legal Status of Child/Youth O Temporary Care Agreement O Society Ward

O Interim Care & Custody O Crown Ward – no access O Crown Ward with access O Other

Q11 Long-Term Conditions O None O FASD O Food or digestive allergies

O Cerebral Palsy O Respiratory allergies O Kidney condition/disease O Any other allergies O Blood disorder O Asthma O Developmental disability O Bronchitis O Learning disability O Heart condition/disease O Attention deficit disorder O Epilepsy O Emotional, psychological, nervous difficulties O Diabetes O Any other long-term condition

Q12a. FASD diagnosed (select one): or Q13a. FASD suspected: □ 1 = FAS □ 1 = FASD assessment in progress □ 2 = partial FAS □ 3 = ARND □ 4 = FASD (undetermined type)

Q12b. Diagnosed by:_ _ (dd) _ _ (mm) _ _ _ _ (yr) Q13b. Diagnosis date: _ _ (dd) _ _ (mm) _ _ _ _ (yr)

ONLAC ~ AAR RESEARCH SUPPLEMENT: Dec.1, 2012 – Mar. 31, 2013

PREVALENCE OF DIAGNOSED OR SUSPECTED FETAL ALCOHOL SPECTRUM DISORDER (FASD) FOR CHILDREN IN CARE IN CHILD WELFARE IN ONTARIO, MANITOBA & ALBERTA

RESEARCH LEADS: Don Fuchs (University of Manitoba), Deborah Goodman (Child Welfare Institute, CAS Toronto), Dorothy Badry (University of Calgary), William Pelech (University of Calgary), &

Sharon Long (Government of Alberta) funded by Public Health Agency of Canada

v.11/11/2012

WHAT IS THE STUDY ABOUT? This Tri-Province FASD Prevalence Project is part of collaborative initiative between Ontario, Manitoba, and Alberta. The intent is to advance understanding of the prevalence of diagnosed or suspected FASD in children and youth in child welfare care. Funded by the Public Health Agency of Canada this study builds on the 2004 research into FASD affecting children in care that was conducted in Manitoba by Drs. Don Fuchs and Linda Burnside.

WHY IS THIS STUDY IMPORTANT TO DO? FASD is a preventable brain disorder caused by maternal prenatal drinking of alcohol. Despite FASD being more prevalent than autism, down syndrome, cerebral palsy, cystic fibrosis, spina bifida and SIDS combined, we still don’t have a clear picture of the prevalence of FASD. In a child welfare population it appears to range from 3% to over 50%.

WHAT DO WE NEED FROM YOU? In order to help us collect the data about children and youth in care who have been diagnosed with or suspected with FASD (e.g., in the process of being assessed for FASD), the study team, with the approval of OACAS and the OnLAC Council, are asking all Ontario Societies and their case workers to provide information about FASD for all children/youth in care in conjunction with completion of the ONLAC Assessment and Action Record (AAR) for each child or youth in

care, from Dec. 1, 2012 to March 31, 2013. This adds two additional short questions to the AAR.

STEP 1 for Case Workers: DETERMINE IF FASD APPLIES TO THIS CHILD/YOUTH For all IN CARE

children and youth who are to have their OnLAC AAR completed between Dec. 1, 2012 to Mar. 31, 2013, determine which children and youth in care have FASD using the following criteria:

a) Diagnosed with FASD by a qualified practitioner with written documentation on file supporting the diagnosis; Or

b) Suspected of having FASD because the youth is in the process of being assessed by a qualified practitioner or has already been assessed but a formal diagnosis is not possible due to the inability to confirm maternal substance use during pregnancy.

Please note: Although children/youth may be suspected of having FASD by the case worker, teacher, foster parents, or other practitioners, at this time, we are only tracking those children/youth who are in care and have either been formally diagnosed or are in the process of being assessed (see definitions above).

STEP 2 for Case Workers: CHECK APPROPRIATE FASD CATEGORY Complete this additional page

attached to the AAR and check the appropriate category below for each unique child/youth in care, following

the definitions provided above.

FASD diagnosed: or FASD suspected: □ 1 = FAS □ 1 = FASD assessment in progress □ 2 = partial FAS □ 3 = ARND □ 4 = FASD (undetermined type) Diagnosed by: (dd) (mm) (yr) Diagnosis date: (dd) (mm) (yr)

Appendix E

STEP 3 for Case Workers: ATTACH THIS FORM TO THE CHILD/YOUTH’S AAR Return this form with the

AAR for that child/youth as per the usual process.