Ontario FASD funding announcement generates hope and concern

May 16, 2017

An announcement from the Ontario government earlier this month committing $26 million in the province’s budget to support youth and families affected by fetal alcohol spectrum disorder (FASD) is being met with a mixed response.

The strategy lists six initiatives, which include providing one-stop access to information, funding for 56 FASD workers and parent support networks, increasing access to FASD initiatives developed by Indigenous partners, establishing consultation groups, and creating a research fund.

“I really want to be hopeful—it’s definitely a start,” says Tracy Moisan, the mother of two adoptive sons ages 6 and eleven, both with diagnosed FASD. “There is so much that can and should be done with that money - but there is still a lot that’s missing.”

Development of the strategy has been in the works for several years, with a key FASD roundtable report released back in September 2015. For many, long-awaited concrete action is welcome, but the proposed strategy still raises some serious concerns. The absence of diagnosis among the priorities constitutes a major gap, according to Moisan.

“Diagnostics are nowhere on that list of priorities and so many families can’t even get past that hurdle,” she says. “In many cases you need that diagnosis to then get to a place where you can start thinking about interventions and strategies that can help your child be successful.”

For Moisan, it took more than two years to get an official FASD diagnosis for both her sons, and not for lack of trying. During that time, they saw numerous medical professionals, including pediatricians, geneticists and occupational therapists. But wait lists, combined with a lack of clear diagnostic procedures dragged the process on for years.

Unfortunately, this isn’t uncommon.

“Access to appropriate diagnostic services is woefully lacking and in Ontario especially it’s a disaster,” says Dr. James Reynolds, Deputy Scientific Director for Kids Brain Health Network. “There is a relatively poor level of understanding about FASD within the medical community. It is not being recognized accurately outside of specialized FASD clinics, and we have very few of those.”

Schools are another area of concern for Moisan and other parents. Currently, it can be very difficult for children with FASD to get the extra help they require to support success in the classroom, yet there is no explicit mention of education in the strategy. Dr. Reynolds is hopeful that by creating more awareness about the disorder, the strategy will have a positive impact on the education system.

“Families struggle with their kids in school because of poor understanding, no recognition of FASD as a disability that deserves attention, and a complete lack of understanding about what the needs of these kids are, and therefore what modifications and adaptations have to occur,” he says.

Elspeth Ross is the mother of two adoptive sons with FASD in their 30’s. Like Ms. Moisan, she is pleased that Ontario is finally recognizing the disorder, however she worries about the strategy being limited to children and youth. “Adolescents and adults with FASD face different challenges, specifically a lack of support for transitioning to adult services, like being able to get some form of assisted living or assisted employment,” says Ms. Ross. “We are concerned about circle of care for the time when we are no longer able to help our children, so we would like to see funding go beyond just children and youth.”

Proposed limits on the number of people who will receive support under the new strategy have also generated questions and consternation. The initial target is set at 2,500, while estimates of the prevalence of FASD in Ontario project as many as 136,000 Ontarians are living with the disorder. As well, just how 56 FASD workers will be able to provide meaningful support even to the smaller target population remains a question, given the paucity of programs and resources for FASD.

Response to the FASD strategy mirrors the cycle of excitement followed by backlash when the new Ontario Autism Program was announced as part of the 2016 budget. Parents were outraged that the new program excluded children ages five and older from access to intensive behavioral interventions, because these children would also be removed from service waitlists they’d been on for years. After three months of lobbying from the autism community, the Ontario government made changes to the program, revisiting the age restriction.

Shortcomings aside, both Moisan and Ross believe the strategy is a step in the right direction towards appropriate FASD support in Ontario. Ms. Moisan points to the parent support networks initiative as being particularly important. “I think in many cases parents are drowning and just trying to figure out how to take that next breath,” she says. “There are a number of really strong parent support networks across Ontario and what I hope this strategy suggests is doing a better job of stitching these different networks together.”

Dr. Reynolds concurs. “One of the biggest hurdles has been overcome in that there is real money attached to named initiatives that are responding at least in part to gaps in services that have been identified through extensive public consultation,” he says. “It took longer than most of us wanted to get to this point, but now that we are here, we need to keep asking questions and keep offering our opinions about the best way forward.”

Earlier this month, the Public Health Agency of Canada (PHAC) announced $3 million in additional funding targeting FASD. Five PHAC projects will focus on prevention, screening and surveillance (enhancing data collection and analysis to inform science, programs and policy).

Image: Elspeth Ross, A Champion for Health and Awareness via Young at Heart