International Scope for Supporting Adults with FASD

 

Sponsor: National Organisation for FASD
Sponsor Liaison: Joanna Buckard and Sandra Butcher
Student Team: Caitlin Bonavita, Grace Casey, Josie Kim
Abstract:

Fetal Alcohol Spectrum Disorder (FASD) affects 2-4% of the UK population, but care provisions remain limited, especially for adults with FASD. This project assisted the National Organisation for FASD by researching policies, practices, and guidelines to support adults with FASD in the USA, Australia, and Canada. We conducted literature reviews to identify which organizations were promoting best practices in support of adults with FASD. We interviewed representatives from several of these organizations. We identified legislation and resources on best practices in housing, education, diagnosis, mentorship, and criminal justice. We recommend the National Organisation for FASD advocate for many of these practices to improve support for adults with FASD in the UK.
Link: FASDFinalBooklet
FASDPresentation
FASD Resource Guide
Contact Sheet
Supplementary Materials

Introduction

In the UK, 2-4% of the population is affected by Fetal Alcohol Spectrum Disorder (FASD). FASD results from alcohol exposed pregnancies and can lead to lifelong neurodevelopmental as well as physical disabilities in their children. These neurodevelopmental disabilities may impair cognitive, behavioral and social skills, as well as academic achievement. Many people believe FASD is a childhood disease; however, it has long-term effects that resonate throughout adult life. The long-term effects of FASD in adulthood include physical disabilities, such as impaired balance, and cognitive and behavior disabilities, such as difficulty focusing and maintaining attention. Many adults with FASD also struggle with mental health issues, drug problems, steady employment, housing, and personal relationships.

In the UK, the National Organisation for FASD provides support for people affected by FASD, their families, and caregiving communities through ample online resources and educational programs. While there is growing awareness of the adverse effects of FASD in childhood, there is a lack of awareness and knowledge about effects that persist in adults with FASD. This means there are few practices, policies, and guidelines that support individuals with FASD in adulthood in the UK. Countries such as the US, Canada, and Australia are beginning to develop such guidelines, policies, and practices that the UK can learn from.

The overall goal of this project was to evaluate policies and best practices in dealing with FASD in adulthood; an inventory of these practices will serve as a basis for developing future policies and programs in the UK. To achieve this goal, the team established four project objectives, each with a set of associated tasks

  1. Assess the state of knowledge and scientific concensus regarding the lifelong impacts of FASD.
  2. Identify the policies, practices, and guidelines proposed and implemented in the UK that address FASD.
  3. Identify the policies, practices, and guidelines that address FASD in adulthood and in general in other countries.
  4. Create deliverables that summarize the current research, policies, and practices.

To accomplish these objectives, we conducted background research and interviews with FASD organizations, advocates, and researchers about policies, practices, and guidelines that address FASD in the UK as well as in the US, Canada, and Australia. In the following chapter we provide general background information on rates of drinking during pregnancy in the UK, the risks and negative effects of FASD, and the lack of support in the UK in terms of developing practices and guidelines that address FASD in adulthood. In subsequent chapters we present our findings on what other countries are providing adults with FASD in terms of housing, education, and employment.