Alcohol and Pregnancy prevention and legal issues of FASD FASD

Size: px

Start display at page:

Download "Alcohol and Pregnancy prevention and legal issues of FASD FASD"

Cornelius Leonard
5 years ago
Views:

1 Alcohol and Pregnancy prevention and legal issues of FASD By Egon Jonsson, University of Alberta, and University of Calgary, Head of the Institute of Health Economics, Edmonton, Canada FASD Fetal alcohol spectrum disorder (FASD) refers to a range of physical, cognitive and behavioral impairments resulting from damage to the fetus caused by maternal alcohol use during pregnancy. These impairments may include growth retardation, malformations of the face, neurological disorders, and cognitive deficiencies such as problems with memory, learning, attention and social communication. The facial abnormalities associated with prenatal alcohol exposure are not always present, and therefore FASD is frequently invisible and undiagnosed. Nonetheless, the brain trauma that alcohol causes in the developing fetus is irreparable, lifelong, and devastating for the individual, the family and other caregivers. In Canada, at least one of every one hundred newborns is affected by fetal alcohol spectrum disorder (an estimated 3,800 newborns in ). As a result of the permanent brain damage caused by prenatal alcohol exposure, an individual with FASD is at high risk for a number of secondary disabilities and negative outcomes. These include homelessness, alcohol and drug abuse, infectious diseases (such as HIV, hepatitis C and tuberculosis), unemployment, mental illness, leaving school, family and placement breakdown, and involvement with the criminal justice system. A majority (60%) of individuals affected by FASD come into conflict with the law (1). FASD also comes with significant costs to society for health, social, educational, justice and correctional services. Most individuals with FASD require extensive support throughout their lives from healthcare services and other services such as home care, special education and social assistance. The total annual cost of FASD in Canada is conservatively estimated at $7.6 billion in 2009 dollars (2). Systematic literature reviews have demonstrated that there is no scientific evidence for the effectiveness of some extensive, commonly used and fairly expensive strategies for prevention of FASD. It has also been demonstrated that effective prevention would provide significant return on investment, since the incremental cost of FASD is approximately $800,000 per case (2 p8), in addition to the even more important human cost to the individual living with the consequences of FASD. The incidence of FASD is frequently estimated at 1% of newborns in North America. Much higher figures, approximately 2% to 6%, have been reported in a study from Italy (3); and a study from South Africa (4) reported that approximately 6% to 8% of newborns are affected by the most severe forms of FASD, fetal alcohol syndrome (FAS) and partial fetal alcohol syndrome (pfas). When thousands of babies are born every year with serious brain injuries that have a known and preventable cause, the response ought to be development and implementation of truly effective measures for prevention. Equally important is the development and implementation of appropriate social supports and legal processes for the majority of FASD-affected individuals who come into conflict with the law.

2 Institute of Health Economics Initiatives on FASD During the last four years, the Institute of Health Economics, a non for profit organization in Edmonton, Canada, has made significant efforts in support of the development of policy issues related to FASD. In , staff of the Institute published initial studies on alcohol consumption during pregnancy and on the cost of FASD (5,6). In 2009, the IHE organized a consensus development conference, Fetal Alcohol Spectrum Disorder (FASD): Across the Lifespan, In 2010 and 2011, the Institute published a series of three books on FASD (2,7,8). Currently, the IHE is assisting in evaluating the work of the Alberta FASD Cross-Ministry Committee and is performing a large number of studies on FASD for the Government of Alberta. As a result of these publications and of the wide dissemination of the jury statement from the IHE consensus development conference on FASD, the Institute has received many requests to take further initiatives in the field. In response, the IHE has formed a Steering Committee for initiatives on FASD. Its first initiatives are: 1) The first International Conference on Prevention of FASD. 2) A consensus development conference on Legal Issues of FASD. International Conference on Prevention of FASD The reasons for drinking alcohol during pregnancy are many, from being unaware of being pregnant or ignorant of the risks of drinking, to using alcohol as a means of coping with challenging personal and socio-economic circumstances. Whatever the reasons, effective prevention strategies need to be identified and adapted to the social, economic, cultural and systems context of each community. The International Conference on Prevention of FASD is expected to draw up to 1,000 participants, including many highly respected and renowned experts on FASD from around the world who have agreed to come as speakers. FASD prevention is of rapidly growing concern in many jurisdictions, and this will be the first international conference to focus on this important subject. The conference will gather speakers primarily from Canada, the United States, Europe, Russia, Australia, Japan and Africa, who will present facts, findings, and FASDprevention approaches used or planned in many jurisdictions. During panel sessions, the findings from effective interventions in various contexts will be discussed and analyzed. Plenary sessions will deal with issues such as successful and innovative approaches to primary prevention of FASD; the role of primary care, including maternal and child health care, in primary prevention of FASD; prevention of FASD in aboriginal communities around the world; the tailoring of messages on FASD to different target groups; controversies in the field of FASD; secondary prevention of FASD, and the prevention of FASD by legal measures. Participants will mainly be individuals working in policy, practice and research in the field of primary, secondary and tertiary prevention of FASD. However, policymakers from many other branches of governments will be invited to attend, as will a broad range of

3 researchers and the general public. A synthesis of the findings will be published in the proceedings from the conference. It is envisioned that the International Conference on Prevention of FASD might become a recurring event with different themes of prevention every second year. A special task force will be appointed to draft a Charter on Prevention of FASD. This charter will be presented to and reviewed by a high-level representation of the attendees at the end of the conference. The charter may serve policymaking efforts on prevention of FASD in many countries. The overall aims of the conference are to: 1) Assist public policy decision makers by providing evidence on strategies for effectively addressing prevention of FASD from both the short- and long-term perspectives. 2) Contribute to the development of appropriate approaches to primary, secondary and tertiary prevention in the field. 3) Provide the tools for effective prevention of FASD at different levels of the health, social, and educational systems. 4) Increase public awareness of the need to prevent FASD. A consensus development conference on Legal Issues of FASD Consensus development process A consensus development conference is a three-day juried hearing of evidence and scientific findings that allows for engagement and collaboration, both of citizens and of decision makers in government and industry, in addressing complex issues. A consensus development conference usually brings together 25 or more experts who deliver evidence and findings addressing 5 to 8 main questions on a particular subject. This evidence is delivered over a period of two days to a jury of 12 to 15 people in front of an audience of about people. Following the hearings, the jury considers all of the evidence during a "sequestered" session overnight and then renders recommendations, including suggestions of policy improvements, in a consensus statement. On the morning of the third day, the consensus statement is read aloud by the jury chair for consideration and discussion by the experts and audience. After clarification and elaboration, the statement is printed and widely disseminated to targeted groups of people nationally and internationally. The IHE s consensus development conferences are modelled on the National Institute of Health (NIH) Consensus Development Program in the United States. It is an approach used in many other countries. The conference topic and resulting recommendations aim at effecting change in policy and practice. The impact of consensus development conferences on policymaking and research funding has been explored in scientific evaluations (9,10,11).

4 Legal issues of FASD Issues associated with the deficits of individuals affected by FASD are surfacing more and more frequently in criminal proceedings (12-16). People with FASD often have serious cognitive and behavioural problems, but have not been diagnosed and rarely exhibit any visible evidence of the disorder. It has been argued that this invisible disability puts them in a disadvantaged position in the justice system, since the awareness of this condition is limited. In light of the under-identification of FASD and the gravity of its symptoms, there is a high probability that individuals with FASD fail to understand their role in an offence, the consequences of their actions, legal proceedings, and the possible outcomes of these proceedings (1). A website on FASD and the justice system also illustrates the large number and variety of legal issues in this field. (17). The Canadian Bar Association (CBA) released a resolution in 2010 urging the federal government to reform the Criminal Code of Canada to better address the needs of offenders affected by FASD. The CBA stated that deterrence and other principles of sentencing are not valid with this population, and that there is a need to amend sentencing laws and to develop alternatives to criminalization of individuals affected by FASD. The Consensus Development Conference on Legal Issues of FASD will be held shortly before the International Conference on Prevention of FASD in September of It will be chaired by a former Canadian Supreme Court Judge; the Honourable Mr. Justice William Ian Corneil Binnie. Presentations of facts, approaches in different jurisdictions, and potential solutions to a number of legal problems will be made by about 25 national and international experts in the field to a jury of about 12 people. After two days of hearings, the jury will produce a consensus statement with recommendations for improvement in policy and practice. A synthesis of the jury s findings will be presented also at the International Conference on Prevention of FASD. The preliminary overall aims of the consensus development conference are to: 1) Answer a specific set of questions pertaining to FASD-related issues in policy and practice in health, educational, social, justice and correctional services. 2) Assist policymakers by suggesting actions for improvement based on the findings from the conference. 3) Assist public policymakers with evidence of effective means of addressing the needs of individuals with FASD who are in conflict the law. 4) Increase public awareness of legal issues associated with FASD. 5) Contribute to prevention of FASD. The consensus statement developed by the conference jury, as well as the proceedings from the conference, will be distributed widely to governmental departments of justice,

5 health, education, social and correctional services; to courts and other judicial institutions, including faculties of law and to certain targeted institutions and other national and international stakeholders. References: 1. Streissguth AP, Barr HM, Kogan J, Bookstein FL Understanding the Occurrence of Secondary Disabilities in Clients with Fetal Alcohol Syndrome (FAS) and Fetal Alcohol Effects (FAE), Final Report to the Centers for Disease Control and Prevention (CDC). Seattle: University of Washington, Fetal Alcohol & Drug Unit, Tech. Rep. No ; Clarren S, Salmon A, Jonsson E (Eds): Prevention of fetal alcohol spectrum disorder: Who is responsible? Introduction pp Wiley-Blackwell. 350 pages, Philip A. May et al: Prevalence of children with severe fetal alcohol spectrum disorders in communities near Rome, Italy: New estimated rates are higher than previous estimates. Int. J. Environ Res. Public Health 2011, 8, Philip A. May et al: The epidemiology of fetal alcohol syndrome and partial FAS in a South African community. Drug and Alcohol Dependence 88 (2007) , 5. Thanh NX, Jonsson E. Drinking Alcohol During Pregnancy: Evidence From Canadian Community Health Survey 2007/8. J Popul Ther Clin Pharmacol Summer;17(2):e Epub 2010 Aug Thanh NX, Jonsson E. Cost of fetal alcohol spectrum disorder in Alberta, Canada. Can J Clin Pharmacol. Vol 16 (1) Winter 2009:e80-e90; January 16, Jonsson E, Dennett L, Littlejohn G (Eds): Fetal alcohol spectrum disorder (FASD): Across the life span. Proceedings from an IHE Consensus Development Conference pages. IHE Riley E, Clarren S, Weinberg J, Jonsson E (Eds): Fetal alcohol spectrum disorder: Management and policy perspectives of FASD. 458 pages. Wiley-Blackwell Calltorp J. Consensus development conferences in Sweden. Effects on health policy and administration. International Journal of Technology Assessment in Health Care 1988;4(1): Portnoy B, Miller J, Brown-Huamani K, DeVoto E. Impact of the National Institutes of Health Consensus Development Program on stimulating National Institutes of Healthfunded research, 1998 to International Journal of Technology Assessment in Health Care 2007;23(3): Mitton C, Smith N, Lee H: Evaluation of 2008 Consensus Development Conference on Depression in Adults. Report to the Project Council of Alberta Depression Initiative, IHE, 2010.

6 12. Gagnier K R, Moore T E, Green M: A need for closer examination of FASD by the criminal justice system. Has the call been answered? J Pop Ther Clin Pharmacol. Vol 18(3): e426-e439; September 1, Fast DK, Conry J. Fetal alcohol spectrum disorders and the criminal justice system. Developmental Disabilities Research Review. 2009; 15(3): Popova S, Lange S, Bekmuradov D, Mihic A, Rehm J. Fetal alcohol spectrum disorder prevalence estimates in correctional systems: a systematic literature review. Canadian Journal of Public Health. 2011; 102(5): Fast DK, Conry J. The challenge of fetal alcohol syndrome in the criminal legal system. Addiction Biology. 2004; 9: Mela M, Luther G. Fetal alcohol spectrum disorder: can diminished responsibility diminish criminal behavior? International Journal of Law and Psychiatry. 2013; 36(2013): FASD Justice Committee: Fetal Alcohol Spectrum Disorder & Justice website, ca.

FASD in Waterloo Region

An Integrated Approach to Address FASD in Waterloo Region Why is this important? Fetal Alcohol Spectrum Disorder (FASD) is the term used to describe the range of permanent disabilities caused by alcohol