Fetal Alcohol Spectrum Disorder: Management and Policy Perspectives of FASD, First Edition

Fetal Alcohol Spectrum Disorder......Page 6
Contents......Page 8
Preface......Page 20
List of Contributors......Page 22
1.1 Introduction......Page 28
1.2 History......Page 29
1.3.1 Fetal Alcohol Syndrome......Page 30
1.4 Risk factors influencing FAS and FASD Conditions......Page 31
1.5 Prevalence and Impact of FAS and FASD......Page 32
1.6 Prevention......Page 34
1.7 Interventions......Page 35
References......Page 37
Part One Incidence, Prevalence, and Economic Aspects of FASD......Page 42
2.2 Maternal Risk Factors and FASD......Page 44
2.3 Determining the Prevalence of FASD: How the Methods Have Influenced the Rates......Page 47
2.4 The Prevalence of FASD from In-School Studies......Page 48
2.5 Summary Rates of FASD and Their Meaning......Page 49
References......Page 51
3.2 Challenges to Obtaining Accurate Incidence and Prevalence Rates......Page 54
3.3.1 National Rates in Canada (see Box 3.1)......Page 56
3.3.2.3 Saskatchewan......Page 57
3.4.1 Child Welfare Systems......Page 58
3.4.2 Corrections Systems......Page 60
3.4.3 Aboriginal Communities......Page 61
3.5 Rate of Exposure to Risk......Page 62
3.7.1 Establish Baseline Rates of FAS/FASD and Track Them Over Time......Page 64
3.7.3 Assess and Intervene in Areas with Higher FAS/FASD Frequency......Page 65
3.7.4 Intervene to Prevent FAS/FASD Where Risk is Higher......Page 66
3.7.6 Key Players......Page 67
References......Page 68
4.1 Introduction......Page 72
4.2.2 Inclusion Criteria......Page 73
4.3.2 Summary of Studies Included in the Review......Page 74
4.3.3 Summary of Methods Used in the Reviewed Studies......Page 76
4.3.4.1 Annual Cost of FAS/FASD for the US, Canada, and the Province of Alberta......Page 78
4.3.4.2 Annual Cost per Case......Page 82
4.3.4.3 Lifetime Cost per Case......Page 83
4.4 Discussion......Page 84
4.5 Conclusion......Page 85
4.6.1 Appendix 1: Search Strategy......Page 86
4.6.2 Appendix 2: Summary of Included Studies......Page 91
References......Page 95
Part Two Causes and Diagnosing of FASD......Page 98
5.1.1 Mechanisms of Alcohol’s Teratogenic Effects......Page 100
5.1.2 Direct Mechanisms of Alcohol’s Actions on the Fetus......Page 101
5.1.3 Indirect Mechanisms of Alcohol’s Actions on the Fetus......Page 102
5.1.3.3 Alcohol and Oxidative Stress......Page 103
5.1.3.4 Disruption of Endocrine Balance......Page 104
5.1.4 Neurobiology of Stress......Page 105
5.1.5 FASD and Stress Responsiveness......Page 108
5.2 Fetal Programming: Programming of the HPA Axis by PAE......Page 109
5.3 Altered Epigenetic Regulation of Gene Expression: A Possible Mechanism Underlying Fetal Programming of the HPA Axis and Altered Neuroendocrine-Immune Interactions......Page 111
5.4 Prenatal Alcohol Exposure: Early Experience, Stress Responsiveness, and Vulnerability to Depression......Page 114
5.4.1 Interactions Between Central Monoaminergic Neurotransmitters and the HPA Axis......Page 115
5.4.2 FASD, Stress, and Depression......Page 116
5.4.3 Prevention and Treatment of Depression in FASD Populations......Page 117
5.5.1 Neurobiology of Addiction......Page 118
5.5.2 Stress and Substance Use......Page 119
5.6 Summary and Policy Considerations......Page 120
Glossary......Page 121
Abbreviations......Page 124
References......Page 125
6.1 Introduction......Page 136
6.2 The Evidence......Page 137
6.3 Genetic Factors in Alcohol Metabolism......Page 138
6.4 Some Genetic Factors......Page 142
6.5 Epigenetics, the Environment and Nutrition......Page 143
6.6 Conclusions, and Some Policy Recommendations......Page 145
6.7 Glossary......Page 146
References......Page 150
7 Diagnosis of FASD: An Overview......Page 154
7.1 History of Diagnosing FASD......Page 155
7.2 How Does Prenatal Alcohol Exposure Cause Damage?......Page 157
7.3 Screening for FASD......Page 158
7.4 The Diagnostic Process......Page 160
7.5 FASD Across the Lifespan......Page 163
7.5.1 Diagnosis in the Neonatal Period and Early Infancy......Page 164
7.5.3 Diagnosing in School Age......Page 165
7.6 Implications of a Diagnosis of FASD......Page 167
7.7 Conclusion and Future Directions......Page 168
References......Page 169
Part Three Prevention Policies and Programs......Page 176
8.2 Prevention Strategies......Page 178
8.2.2 LifeSkills Training......Page 179
8.2.3 The Alexis Working Committee......Page 180
8.2.4 The Adaptations Committee......Page 181
8.3 Research Relationships......Page 182
8.4 The CIHR Guidelines for Research Involving Aboriginal People......Page 183
8.5 Summary......Page 184
References......Page 185
9.1 Introduction......Page 188
9.2 Applying Gender-Based Analysis to FASD Prevention......Page 189
9.3 Developing a Framework for Women-Centered Prevention Practice......Page 190
9.3.2 Harm-Reduction Orientation......Page 192
9.4 Evidencing the Framework......Page 193
9.4.1 Research on Women-Centered, Trauma-Informed Care......Page 194
9.4.2 Research on Harm-Reduction Practice......Page 195
9.4.3 Research on Collaborative Care......Page 196
9.5 Conclusions......Page 197
References......Page 198
10.1 Introduction......Page 202
10.2 Current State of FASD Primary Prevention in North-Western Canada......Page 203
10.2.1 The Born Free Campaign......Page 205
10.2.2 The Mother Kangaroo Campaign......Page 207
10.2.4 Summary of Results......Page 208
10.3 Campaign Evaluation: What Is It and Why It Is Important......Page 209
10.4 Incorporating Social Marketing Strategies......Page 211
10.5 Creating Behavioral Change: Protection Motivation Theory......Page 212
10.6 Future Considerations for Health Promoters and Policy Makers......Page 215
References......Page 216
11.2 FASD Prevention......Page 220
11.3 Background......Page 221
11.4.1 Relational Theory......Page 222
11.4.2 Stages-of-Change......Page 223
11.5.1.2 Working with the Family......Page 224
11.5.2 Between the Client and the Community Service Providers......Page 225
11.6.2 Family Planning......Page 226
11.7 PCAP Outcomes......Page 227
11.9 PCAP Intervention with Women who Themselves Have FASD......Page 228
11.10 Policy Recommendations: Collaborative Approaches for Preventing Alcohol-Exposed Pregnancies......Page 229
References......Page 231
12 FASD in the Perspective of Primary Healthcare......Page 234
12.1 Primary Care Approaches to FASD......Page 235
12.2 Barriers to Screening......Page 237
12.3 Impact of Healthcare Reform......Page 238
Reference......Page 239
Part Four FASD and the Legal System......Page 240
13.1 Introduction......Page 242
13.2 The Legislative Context......Page 243
13.3 The Information Gap......Page 244
13.4 The Manitoba FASD Youth Justice Program......Page 247
13.5 Screening......Page 248
13.7 Medical Assessment......Page 249
13.8 The Doctor’s Report and Its Use......Page 250
13.9 Sentencing Conferences......Page 251
13.11 The Statistical Outcomes......Page 252
13.13.1 “This is Me”......Page 253
13.13.3 The Icons Project......Page 254
13.14 Strengths and Challenges......Page 256
References......Page 258
14 Understanding FASD: Disability and Social Supports for Adult Offenders......Page 260
14.1.1 Primary Disabilities Associated with FASD......Page 261
14.1.2 Secondary Disabilities Associated with FASD......Page 262
14.1.3 The Social Determinants of Health and FASD......Page 263
14.1.5 Incarceration and FASD......Page 264
14.2 Correctional Environment in Canada for Adults with FASD......Page 265
14.2.2 Recidivism and Alternative Sentencing......Page 267
14.2.3 Release Planning......Page 269
14.2.4 Correctional System Needs......Page 270
14.3 Interventions and Social Supports for Adults with FASD after Release......Page 271
14.3.1 Client-Centered Lifelong Multisectoral Supports......Page 272
14.3.2 Employment and Housing......Page 273
14.3.3 Training and Programs......Page 274
14.3.4 External Executive Function Support......Page 275
14.3.5 FASD Costs......Page 276
14.3.6 Developmental Disability Assistance......Page 277
14.4 Policy Considerations for Adults with FASD......Page 278
References......Page 280
15.1 Introduction......Page 286
15.3 Childhood......Page 288
15.4 Adolescence/Teenage Years......Page 291
15.5 Adulthood......Page 292
15.6 A Disability Paradigm for FASD......Page 294
15.7 Cultural Fairness......Page 295
15.8 Life Trajectory Policy Model......Page 296
15.9 Conclusions......Page 297
References......Page 298
16.1 Introduction......Page 302
16.2 Study One: Children in Care with Disabilities......Page 304
16.3 Study Two: The Trajectory of Care for Children with FASD......Page 305
16.4 Study Three: Youth with FASD Leaving Care......Page 307
16.5 Study Four: The Cost of Child Welfare Care for Children with FASD......Page 309
16.6 Study Five: Economic Impact of FASD for Children in Care......Page 311
16.7 Conclusions......Page 319
References......Page 320
17.2 Background......Page 324
17.3 Program Model and Components......Page 325
17.4 Literature......Page 326
17.5 Evaluation Methods......Page 327
17.6 Formative Evaluation Findings......Page 328
17.6.1 Activities and Role of the Key Worker......Page 330
17.6.2 Regional and Provincial Supports for Key Workers......Page 332
17.6.3 Parents’, Caregivers’ and Community Partners’ Perceptions of the Program......Page 334
17.6.4 Program Challenges......Page 335
17.7.1 Increased Knowledge about FASD......Page 336
17.7.3 Feeling Supported......Page 337
17.8 Discussion......Page 338
17.8.1 Promising Practices......Page 339
17.9 Policy Considerations......Page 340
17.10 Conclusions......Page 341
References......Page 342
18.1 Introduction......Page 344
18.2 Where Do Students with FASD Fit Into the Education System?......Page 345
18.2.2 Exclusion and Discipline......Page 346
18.3 Students with FASD within Special Education Systems......Page 347
18.4 Education Professionals and FASD......Page 348
18.6 Policy indications......Page 349
References......Page 352
19.2 Why Do We Need to Make a Shift?......Page 354
19.3 Examples of Individual’s Situations......Page 355
19.4.1 Diagnosis......Page 357
19.4.2 Prevention......Page 359
19.4.4 Outcomes......Page 360
19.5 History......Page 361
19.6 Future......Page 362
19.7 Policy Considerations......Page 363
19.8 Conclusions......Page 364
References......Page 365
20 A Social Work Perspective on Policies to Prevent Alcohol Consumption during Pregnancy......Page 366
References......Page 375
Appendix to Chapter 20......Page 377
21.1 Introduction......Page 380
21.2 The Impact of FASD......Page 381
21.4 FASD Service Network Program......Page 383
21.5.1.1 Parent–Child Assistance Program......Page 384
21.5.2.1 Development of an Assessment and Diagnosis Model for Aboriginal and Remote Communities......Page 385
21.5.2.3 Development of FASD Clinical Capacity......Page 386
21.5.3.1 Employment Supports for People Affected by FASD......Page 387
21.5.3.6 FASD Community Outreach Program Demonstration Project......Page 388
21.5.3.10 FASD Videoconference Learning Series......Page 389
21.5.3.13 The WRaP (Wellness, Resiliency and Partnerships) Coaching Demonstration Project......Page 390
21.5.4.2 Promising Practices, Promising Futures: Alberta FASD Conference 2009 and 2010......Page 391
21.5.4.6 Building an Educated Workforce......Page 392
21.5.6.1 Corrections and Connections to Community......Page 393
21.5.7 Stakeholder Engagement......Page 394
References......Page 395
22.2 The Development of a Rational Service System for At-Risk Children......Page 396
22.3.1 What is the Prevalence of the Special Subpopulation?......Page 397
22.3.3 What Is the Attributable Risk of the Particular Disorder for These Specific Difficulties?......Page 398
22.4.1 What Is the Prevalence of FASD?......Page 399
22.4.2 What Is the Prevalence of Specific Difficulties/Needs within a Population of Children with FASD?......Page 400
22.4.3 What Is the Attributable risk of FASD for these Specific Difficulties?......Page 402
22.4.4 What Is the Effectiveness of Interventions for FASD?......Page 405
22.4.5 Is There Evidence for Unique Benefits to Support Separating-Out Services for Children with FASD?......Page 406
22.4.6 Are There Risks in Delivering Services Separately for Children with FASD?......Page 408
References......Page 410
Part Five Research Needed on FASD......Page 414
23.1 Introduction......Page 416
23.2.1 Primary Prevention: Social Support and Determinants of Women’s Health......Page 417
23.2.2 Accurate Diagnosis of FASD: Preventing Secondary Disabilities and Reaching out to Mothers (and Potential Mothers)......Page 420
23.3 Conclusions: Drawing a Road-Map for Integrated, Supportive, and Effective Care......Page 423
References......Page 424
24.2 FASD and Heterogeneity: An Encouraging Outcome......Page 426
24.3 Models: Moving Beyond Description......Page 429
24.4 Applying Neuroscience: Beyond the Mother?......Page 430
24.5 Summary......Page 432
References......Page 433
Part Six Personal Views from People Living with FASD......Page 438
25 Living with FASD......Page 440
26 Charlene’s Journey......Page 446
Process......Page 460
Question 1......Page 461
Question 2......Page 462
Question 3......Page 463
Question 4......Page 465
Question 5......Page 466
Question 6......Page 468
Conclusion......Page 469
Conference Speakers and Topics......Page 470
Planning Committee......Page 473
Scientific Committee......Page 474
Chair......Page 475
CEO......Page 476
FASD Research and Resources......Page 477
Index......Page 478