A recent report paints a concerning picture for pregnant women with disabilities in Ontario’s healthcare system. Published in May 2024, the study by the Institute for Clinical Evaluative Sciences (ICES), University of Toronto Scarborough, and the Centre for Addiction and Mental Health exposes a gap in accessible care and troubling instances of disrespect from healthcare providers.
The research, based on health records from 2010 to 2020, highlights a surprising statistic: one in eight pregnant people in Ontario identifies as having a disability. This encompasses a wide range of physical, sensory, and developmental conditions.
Women with disabilities were found to be more likely to require hospitalization or to visit emergency departments during their pregnancies compared to those without disabilities. This suggests a potential gap in preventative or routine care specifically tailored to the needs of this population.
Lived experiences of disrespect
Beyond the numbers, the report sheds light on the lived experiences of disabled pregnant women. Interviews with over 60 participants, including both women with disabilities and healthcare providers, revealed a disturbing trend. Many participants recounted encountering negative and discriminatory attitudes from healthcare professionals.
We heard “lots of stories about people being met with quite negative and ableist attitudes from health-care and social service providers about their pregnancies,” said Hilary Brown, the report’s lead author and an adjunct scientist with the ICES, to CBC News.
Brown explains that these negative experiences included assumptions from medical professionals that disabled women would seek abortions or wouldn’t be capable parents.
The report goes beyond attitudinal barriers, detailing the practical challenges faced by pregnant women with disabilities. These challenges include a lack of physical accessibility in clinics, limited availability of communication aids like sign language interpreters, and a general lack of understanding from healthcare providers about specific disabilities.
“If people had questions about how their disability might impact their pregnancy or how the pregnancy might impact the progression or symptoms related to their disability, they were often met with providers who just weren’t sure where to find information, because they just didn’t have many resources themselves,” said Brown.
Solutions to improve care
The report doesn’t simply highlight problems; it also proposes solutions. The authors recommend a multi-faceted approach to improve care for disabled pregnant women.
This includes increased education and training for healthcare professionals to equip them with the knowledge and sensitivity needed to provide informed and supportive care. The current fee-for-service model, which often discourages doctors from spending extra time with patients requiring additional support due to disabilities, also needs to be addressed. A more flexible system would incentivize providing the necessary care.
Finally, ensuring clinics are physically accessible and readily equipped with communication aids is crucial for inclusive care.
Wendy Porch, a report advisor and Executive Director of the Centre for Independent Living in Toronto, emphasizes the urgency of these changes. Despite facing challenges during her own pregnancy, Porch successfully carried and breastfed her son. However, her story underscores the lack of comprehensive support systems available to disabled parents.
“I don’t think that there is even close to adequate training for any kind of medical practitioner, frankly, about what supporting a disabled parent could look like,” Porch told CBC.
This report serves as a call to action for healthcare professionals and the public at large. By raising awareness, improving training, and creating a more inclusive healthcare system, Ontario can ensure equitable care for all pregnant women, regardless of disability.
