Canada is in the midst of a housing crisis. A systematic failure to provide decent and affordable housing means far too many people are ending up homeless. Rigid and unresponsive policies perpetuate adversity and fuel stigma that places blame on the individual. And for already vulnerable and marginalized people, finding a suitable place to live can be all the more challenging.
That includes people with Fetal Alcohol Spectrum Disorder (FASD). FASD is used to describe impacts on the brain and body of individuals prenatally exposed to alcohol. In other words, when alcohol is consumed during pregnancy, it can cross the placenta and impact fetal development.
If you are unfamiliar with the term, you’re not alone: despite an estimated 1.5 million Canadians living with the disorder, awareness of FASD is limited and support remains insufficient.
However, the lack of consistent systematic support means that 90 per cent of individuals with FASD will experience mental health issues, and they are around 20 times more likely to struggle with substance use than the general population.
As a result of these challenges, many people with FASD also experience homelessness: whether it be hidden (couch surfing, or residence in shelters) or more visible (having no physical shelter available). However, with recognition and accommodation, success and stability are possible.
September marks Fetal Alcohol Spectrum Disorder Awareness Month. Now is an apt time to learn more about the disorder and about those who you might know who have it.
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Impacts of FASD
The way alcohol causes cognitive deficits is complex, and as the name of the disorder implies, the effects exist on a spectrum. FASD is a lifelong, whole-body disorder. People with this disorder may need support with motor skills, physical health, learning, memory, attention, communication, emotional regulation and social skills to reach their full potential.
These impacts mean that people with FASD can struggle with everyday tasks. For example, memory challenges may make tasks like paying rent and taking medication on time difficult. The cognitive impacts of the disorder can also impact a person’s performance at work. That can make finding and keeping a place to stay all the more challenging.
In our recent study, Alice, an adoptive parent of two boys with FASD, described a time when she came to visit one of them, and that her son agreed to meet her at a time and place. When she arrived, her son was not there. He did not know what day of the week it was. Without an understanding of how FASD can change the brain, people can be perceived as unco-operative, defiant or unwilling to participate in supports. In reality, as Alice put it, “there’s just a complete lack of understanding that it’s not willful.”
People with disabilities experience discrimination in their daily lives and in housing. Individuals with FASD are no different.
They can experience discrimination from landlords who do not understand the disorder, hold negative stereotypes, or do not want to rent to individuals receiving disability benefits as their primary source of income. Discrimination based on source of income is especially problematic for people who are in crisis: being penalized for using disability supports defeats the purpose of them.
Individuals with FASD are fully capable of success. Their largest barrier comes in the form of understanding, or lack thereof, from broader society. People with FASD are often just as personable, funny, clever and caring as anyone else. However, that can mask the underlying brain differences that make typical housing supports unconducive for them.
Shelters, for example, are loud and overstimulating environments, but if a person with FASD leaves, they are seen as rejecting supports rather than protecting themselves. People with FASD may need assistance in working out disputes with their landlord, or struggle with rigid rules and regulations. Knowing more about FASD would prevent situations from escalating to eviction.
More understanding needed
In the world of FASD research, there has been movement towards finding ways to implement understanding to better support safe and stable housing. The Canada FASD Research Network’s framework aims to reflect the voices of individuals struggling to be housed while empowering service providers in their supportive efforts.
The fundamentals that need to change come down to several points: access, individualization and collaboration. These need to be improved across multiple systemic levels, including housing itself, resources around housing (including basic resources, such as nutrition), and creating flexible and adaptive policy.
The fundamental component to these improvements is knowledge of FASD. Fostering broader understanding of these brain-based differences would inform policy changes, emphasize resource requirements and eliminate the misunderstandings that can lead to individuals with FASD losing access to needed supports.
National FASD Framework
The Canada FASD Research Network has put forward a National FASD Framework, proposed as Bill S-253 in the Senate in 2022. The bill is currently waiting to go to committee in the Senate. If passed into law, the framework would be the systematic and co-ordinated effort that is truly necessary to address support for FASD while recognizing the disorder at a national level.
Right now, people with FASD experience scattered, inconsistent support across Canada. The bill describes a development plan for a framework that would address that. This includes consulting caregivers, self-advocates and representatives of provincial and territorial governments.
That also includes making sure the framework will address training needs of professionals working with people with FASD and setting out national support measures for those impacted by it. Passing the bill would ensure the development of this framework, which would be an essential step towards improving the lives of individuals with FASD.
While systemic supports are essential, understanding and education need to be fostered at every level, starting with the individual. Better understanding, awareness and acceptance will then promote diagnosis, which will allow individuals to receive the support they require.
Having a decent place to live is the foundation for a healthy and stable life. For individuals with FASD, that foundation is too often absent. The basis of understanding has not yet been built. Restructuring supported housing to suit each individual person will require a tremendous and co-ordinated effort, but its effects will be felt outside of just this population. Personalized and human-centred care will benefit everyone who is unhoused.
Celisse Olivia Bibr is a Research Assistant for Canada Fetal Alcohol Spectrum Disorder Research Network (CanFASD).
Jacqueline Pei is Lead of the Intervention Network Action Team for the Canada Fetal Alcohol Spectrum Disorder Research Network (CanFASD). The original research reported in this article was supported by funding from the Canada Mortgage and Housing Corporation’s (CMHC) National Housing Strategy Solutions Labs. The Co-Creating Housing Solutions: Enacting Opportunities for Individuals with Fetal Alcohol Spectrum Disorder (CHOoSE) received funding from the CMHC under the NHS Solutions Labs.
Kelly Harding is the Director of Research Administration and a Research Associate with the Canada Fetal Alcohol Spectrum Disorder Research Network (CanFASD).
