One in eight pregnant people have disabilities but face lack of accessible care, report shows

A new report says one in eight people who are pregnant in Ontario has a disability, but many face barriers to accessible care, as well as disrespectful attitudes from doctors and other care providers.

Lead author Hilary Brown from the Institute for Clinical Evaluative Sciences says people with disabilities have been overlooked in reproductive health care because of societal assumptions that they won’t have children.

Brown says some disabled participants in the study told researchers that nurses and doctors assumed they wanted to get abortions when they were seeking pregnancy care.

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.

The report published on Tuesday calls for more education and training about disabilities for physicians, nurses and other care providers who work with pregnant people.

It also calls for changes in how doctors are funded to allow them to spend more time with pregnant patients with disabilities.

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 – but 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.

Years later – although most health-care providers are well-meaning – 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 researchers examined health records of pregnant people in Ontario between 2010 and 2020 and interviewed more than 60 people with disabilities, health-care and service providers.

The report on pregnancy and disability was co-authored by the Institute for Clinical Evaluative Sciences (ICES), the University of Toronto Scarborough and the Centre for Addiction and Mental Health.