Working in the FASD field for the last 15 years, Allison Pooley is used to seeing the neurodisability fly below radar.
Since the publication of the prevalence figures for FASD, multiple media outlets have approached Pooley, the executive director of the Asante Centre, a multi-site diagnostic and service centre in British Columbia, seeking to understand the implications of the prevalence study. This is an exciting first stage of inquiry, Pooley reflects, one she hope will elicit significant response from policymakers and funders over the next year.
Advocacy will be essential in the developing dialogue about FASD, she says, “as we try to prevent individuals from falling through the cracks in every system. This study helps add weight to advocacy initiatives across Canada, finally demonstrating the importance of the conversation and how we can coordinate efforts.”
Before, FASD was never been part of the conversation. But it’s catching fire now.
Kindling was already smoldering in Quebec between March 21 and April 24. FASD has typically had low visibility, in the province, but more than 1,800 people urgently pressed the Government of Quebec to implement an FASD action plan between March 21 and April 24, citing the recommendations of the National Institute of Public Health of Quebec. On May 1, Public Health Opposition Critic May Lise Lavallée, MP (Repentigny) introduced a petition in Quebec’s National Assembly, reflecting the public outcry.
Strong advocacy by parents in Quebec’s autism community saw some success when last year, the government boosted funding by $29M annually and a one-time additional infusion of $11M to address issues across the lifespan. This was less than half the amount called for by the community. Children with autism are still waitlisted two years after their diagnosis, lined up for services they may not receive before aging out of eligibility.
Changing the system
“The question now is how we’re going to correct a lot of the inefficiencies that exist in the system,” remarked Warren Greenstone, president of the Miriam Foundation, an organization involved in autism care since the 1960s, at the time in the Montreal Gazette.
“Prevalence was an important starting point in our consideration of autism and intellectual disability and the changing needs of people over their life course,” says Malvina Klag, president of the Miriam Foundation-funded See Things My Way Centre for Innovation. Now focused on piloting new approaches to service across the lifespan, the Centre’s goals are replicability and catalyzing change in the public health system.
“We’re here to help disrupt the existing system and bring about much-needed improvements,” she says. “However, in order to do so, beyond overall prevalence and prevalence by age, we need to know more about prevalence of the various sub-groups within these populations according to their support needs.”
The system in Quebec is in the process of changing itself. Reorganization and a new focus on gap analysis, needs assessment and program evaluation are taking root within elements of the Quebec health care system, including those that touch children and youth with neurodisabilties.
Suzanne Cloutier, associate director of rehabilitation for the Integrated Health and Social Services University Network for West-Central Montreal – a centre that provides services for the highly diverse population of people with disabilities with its geographic area – says that “for most of our history here in Quebec, we’ve provided rehabilitation and care. It was much more maintenance-oriented. Now we’re asking, ‘what can you achieve, what kind of impact will your action have on the client’s daily life, and will that be maintained over time’?”
The prevalence figures for FASD didn’t surprise Cloutier, who suspects many, if not most of Montreal’s children with prenatal alcohol exposure have not been diagnosed. For the time being, the notion of prevalence won’t change the reality that children and youth showing signs of, or already diagnosed with the neurodisability, will not be likely be seen in rehabilitation centres. The treatments on offer aren’t targeted to their needs.
Are National Strategies the Answer?
Members of the FASD community are hopeful that armed with prevalence figures that are scientifically sound, the federal and provincial governments will recognize the scope of the problem and respond with increased funding, services, and supports. In the 2018 $300 billion federal budget, no money was allocated to FASD, an issue Executive Director of the CanFASD’s research network Audrey McFarlane recently explained in a blog post.
“One reason is that there is no national strategy for coordinating Canada’s efforts and response to FASD,” McFarlane writes. “We also recognize that many families are unable to advocate for their loved ones because of the stigma and shame that continues to surround FASD. We are proud of the families and professionals who are advocating for their loved ones with FASD, but time and time again, the response to their advocacy is long waitlists or an absence of services altogether. We know a lot about FASD, but there is still work to be done.”
Looking forward, many FASD advocates envision the community, researchers, and provincial and federal governments uniting in a way similar to how the ASD community in Canada has come together.
Even with the advantages of more funding and comparative cohesion and momentum, the autism community has not succeeded in convincing the Conservative or Liberal Governments to implement a national strategy.
Senator Jim Munson, a longtime supporter of the autism community, applauds the prevalence statistics, saying they “begin to provide the evidence-based data needed to inform policy and programs.”
But a national strategy is also necessary, he states in an April 17 editorial in the Ottawa Citizen. “It names the partners, what their role is and how they need to work collaboratively. It recognizes the federal, provincial and territorial jurisdictions and the areas of that collaboration. It gives meaning to the scientific research. It defines what federal leadership is. It names the gaps in policy and funding. It highlights best practices in all the multi-sectors.
“The federal government in its 2018 budget announced some program funding for two areas of initiative. It is hoped that this announcement will help us get to a national strategy. Yet it is not enough. Governments and organizations are working in silos and missing opportunities to collaborate and bring innovative thinking. Too many communities are underserved and under-resourced.”
Building Together
Both Rob More, father of three “inspiring and amazing” children living with FASD, and Allison Pooley, working in a community-based organization, would like to see FASD organizations achieve gains similar to those made by the ASD community. “We need to build upon public understanding of autism that everyone has worked so hard to develop, and leverage that knowledge and compassion to address other neurodevelopmental needs like FASD,” she says.
“We feel the FASD community needs a larger voice, and we need to be louder and more unified as a community than we are right now,” adds More, noting the new statistics are already working to unite researchers, families, and advocacy groups.
“The biggest thing this number does is tell people they’re not alone in this,” concludes More. “It doesn’t eliminate the shame and the stigma, but it certainly lessens it. These numbers give legitimacy to what those of us living with this disability have been saying – and that brings us hope.”
Retrieved from: http://kidsbrainhealth.ca/index.php/2018/05/28/beyond-the-numbers-why-canadian-neurodisability-prevalence-rates-matter/
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