One in eight pregnant people in Ontario has a disability, but many face barriers to accessible care and disrespect from health-care providers, a new report published Tuesday says.
People with disabilities have been overlooked in reproductive health care partly because of false societal assumptions that they aren’t sexual and won’t have children, Hilary Brown, lead author of the report and an adjunct scientist with the Institute for Clinical Evaluative Sciences in Toronto, said in an interview.
The researchers examined health records of pregnant people in Ontario between 2010 and 2020, including data from almost 150,000 births to people with physical, sensory and developmental disabilities.
That data showed women with disabilities were more likely to visit the emergency department or be admitted to hospital during pregnancy than women who didn’t have a disability.
“(What) emergency department visits in pregnancy usually tell us is that there’s some sort of gap, you know, that could have potentially been addressed with a person’s primary-care (provider) or obstetrician,” Brown said.
The researchers also interviewed more than 60 people with disabilities, health-care and service providers.
Although many of them reported positive experiences with pregnancy, the researchers also heard “lots of stories about people being met with quite negative and ableism attitudes from health-care and social service providers about their pregnancies,” Brown said.
Some disabled participants in the study told researchers that nurses and doctors assumed they wanted to get abortions when they were seeking pregnancy care, she said, or made negative assumptions about their future parenting capabilities.
Some participants reported a lack of accessibility in doctors’ offices for people with mobility issues, as well as a lack of sign language interpretation during critical times such as labour and delivery.
Others reported a lack of understanding from health-care providers about their disabilities, what they are capable of doing and the care they needed.
“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,” Brown said.
The report calls for more education and training about disabilities for physicians, nurses and other care providers who work with pregnant people.
It also calls for more flexibility in Ontario’s fee-for-service payment model for doctors, where they are only paid for a certain amount of time spent in appointments with pregnant patients.
Pregnant patients with disabilities often need more time with their doctor – and the doctor needs more time to help arrange additional care and accommodations for their patients, Brown said.
“A lot of providers really wanted to provide more comprehensive care, but it was often quite difficult for them to do that within the current (fee) structure that they had available to them.”
The only surprising part about the findings is that the gaps in care are just now coming to light as a significant issue, said Wendy Porch, executive director of the Centre for Independent Living in Toronto, who was on the advisory committee for the report.
“Disabled parents have existed forever. We’re not new,” she said.
“I think there was a lot of goodwill and a lot of interest in supporting me. But there was not necessarily a lot of knowledge attached to that,” she said.
Porch was born missing part of her right arm and part of her left hand. Her son Jasper is now 11, but throughout her pregnancy she tried to get guidance from her health-care providers about how she could hold and breastfeed her baby – and they weren’t able to help.
“I felt far more disabled in those first few months of being a mom than I had pretty much my whole life,” she said in an interview.
The nurses in the hospital who were checking on new moms as they learned to breastfeed didn’t recognize she was having trouble and sent her home, Porch said.
Although most health-care providers are well-meaning, years later there still aren’t enough pregnancy and postnatal supports for people with disabilities, she said.
“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 said.
“I think that the report makes that quite clear, that there’s a lot of room to grow there.”
The report on pregnancy and disability was co-authored by the Institute for Clinical Evaluative Sciences, the University of Toronto Scarborough and the Centre for Addiction and Mental Health.