New resource program for people & families affected by FASD announced

September 9, 2015

A two-year initiative aimed at increasing capacity to identify and meet the needs of children, youth, adults and families affected by Fetal Alcohol Spectrum Disorder was launched today in Ottawa.

NeuroDevNet is one of four organizations funding the Fetal Alcohol Resource Program along with a private donor. Spearheaded by Citizen Advocacy Ottawa, a small registered charity that supports people of all ages across the disability spectrum and their families, the project will focus on Ottawa alone, though it is hoped the three-pronged program will serve as a model for other regions in Canada.

The announcement of the program comes on Sept. 9, International FASD Awareness Day, with the intent of drawing attention to a much-needed service for the many people in Ottawa affected by FASD, according to Brian Tardiff, Executive Director of Citizen Advocacy. “Our dynamic FASD team will develop a plan that builds on local needs, strengths and networks, while drawing on a growing national body of tools and knowledge,” he said.

A system of support is lacking

FASD is a brain injury, caused by a mother’s consumption of alcohol during pregnancy. Determining how many Canadians are living with FASD is difficult, as individuals are often not diagnosed until later in life when learning disabilities and behavioural challenges emerge. In 2006, Health Canada estimated that approximately 1% of the population is affected by FASD, but NeuroDevNet investigators and other experts consider this to be a significant underestimation of the scope of this public health issue. Despite the large numbers of people affected by this permanent brain injury, there is no strong, comprehensive system of inter-related, complementary services and supports for individuals and their families affected by FASD.

“Following a new diagnosis, what frequently happens is families are forced to go and find services and supports based on a variety of needs for their child that have been identified,” said Dr. James Reynolds, the co-lead of NeuroDevNet’s FASD Research Group, who will be evaluating the impacts of the program and its uptake through an integrated knowledge translation approach.

Tracking down a speech and language pathologist, a psychologist and other consultations may involve visiting five – or more – agencies and an enormous and frustrating investment of time, effort and money. “So it goes on and on, and what we have in place is really just a system of fractured services, where it’s not always obvious that this is where families should go,” added Reynolds. “A lot of agencies actually do advertise that they provide services for FASD. That can mean a lot of things to a lot of people. They may advertise they have intervention strategies developed for FASD. That’s often not the case, even if they have programs for behavioural problems."

Fragmentation stresses families

“FASD is not a behavioural problem, it’s a brain injury that is causing all these cognitive and behavioural difficulties,” said Reynolds. “You can’t expect to have the same kinds of results you would have with other brain disorders. The families are very frustrated because they’re actually not getting what they need.

“The stressors put on the families affect the health of the family and that is a consequence of our current system,” he added.
One of the first activities of the new program will be identifying just how much of a safety net exists in the Ottawa region, and finding out where, and how big the holes are. The three part-time coordinators hired to run the program will determine what services are available, who’s offering them, and what the entry criteria are.

Drawing together resources, skills and knowledge that already exist within the partnering/funding agencies, social services sector, institutions, families and community at large, the coordinators will then focus their efforts on:

  • educating professionals about FASD, including health, education, justice, law enforcement, corrections, child welfare and social services,
  • community development leadership to assist existing resources in building their capacity to respond to and support individuals affected by FASD and their families, and
  • service navigation by providing coordinated access to support services to individuals affected by FASD.

Measuring outcomes

Given the complexity of rolling out this program, starting in one municipality only made sense, according to Reynolds, who has helped the advisory group supporting the project identify goals, objectives and activities that will allow them to evaluate impact. Measures will be both qualitative and quantitative: listening closely to families’ and individuals’ experiences, as well as tracking the number of families participating, the levels of success in linking them with services they need and gauging their satisfaction with the assistance will all be important. Outreach, resources and the program website will also be evaluated for their usefulness to the community.

September 9th is International FASD Awareness Day when people all around the world gather for events to raise awareness about the dangers of drinking during pregnancy and the lifelong challenges of individuals and families who struggle with Fetal Alcohol Spectrum Disorders. The first FASD day was celebrated on 9/9/99. This day was chosen so that on the ninth day of the ninth month of the year, the world will remember that during the nine months of pregnancy a woman should abstain from alcohol.

“Navigating the system of supports and services can be a daunting process”, says Reynolds, “which too often leaves families feeling isolated and alone. That’s why we believe a program like this will be so valuable. Our goals are to raise awareness and knowledge about FASD within service agencies, and to support individuals and families in accessing services that match their needs.”