National AccessAbility Week promotes inclusion and access for people with disabilities in all aspects of life. However, one area in which people with disabilities have reported feeling invisible and excluded is in pregnancy care.
In our work as a team of researchers, clinicians and people with lived experience of disability, we have heard concerning stories about the experiences of pregnant people with disabilities.
There are accounts of exam tables and weight scales in obstetricians’ offices that could not accommodate people using mobility devices. There are communication problems because American Sign Language interpreters were not made available during labour and birth. And people report a siloed and confusing patchwork of health and social services that was difficult for many to navigate.
In a report released today by ICES, we describe the pregnancy outcomes and health care experiences of people with disabilities in Ontario.
Using anonymized health records for 150,000 pregnant people with disabilities, we found that many people with disabilities had healthy pregnancies and healthy babies. But they were more likely than people without disabilities to experience a range of pregnancy complications – for example, they were more likely to visit emergency departments and to be hospitalized in pregnancy and postpartum, and their babies were more likely to be born early.
In our in-depth interviews with more than 60 people with disabilities, service-providers and policymakers, we certainly found examples of positive pregnancy care experiences. But we also heard just how inaccessible pregnancy care can be for people with disabilities.
In our interviews, one blind participant told us about developing gestational diabetes, and having to use a sight-dependent test to check her blood glucose several times a day.
Or there was the story of a participant whose obstetrician – after seeing her wheelchair – asked if she was there to get an abortion. She and her partner had been trying for more than a year to get pregnant.
A participant with a developmental disability tried to hide her disability because she was afraid of judgment from her health-care providers if she showed a need for help.
Many participants said their own advocacy or speaking up for themselves in health-care settings, was one of the few resources at their disposal.
Service providers and policymakers told us about structural barriers to the delivery of accessible pregnancy care, including a lack of time during appointments to address patients’ needs – often cited as a consequence of Ontario’s fee-for-service remuneration system. Other barriers included insufficient funding to purchase accessible equipment, inadequate disability-related training and education, and few clinical guidelines to support delivery of care to this population.
People with disabilities did not feel seen in our pregnancy care system.
More than anything, we heard that people with disabilities did not feel seen in our pregnancy care system. While we found that 13 per cent of all pregnancies in Ontario were persons with a physical, sensory or developmental disability, current clinical supports were not designed to include them.
It’s time for change
We need better education for physicians, midwives and nurses about disability. Disability competency curricula in the United States suggest areas of knowledge and skill required for providing accessible health care, and studies show that meaningful interactions with patients with disabilities during training can combat ableist attitudes. These concepts could be added to the equity, diversity and inclusion efforts currently being integrated into many health-care provider education programs in Canada.
We need a greater focus on accessibility in pregnancy care settings. This includes both physical and communication-related accessibility. Groundbreaking clinics such as the Accessible Care Pregnancy Clinic at Sunnybrook Health Sciences Centre are already showing how this can be done well, and similar clinics could be created elsewhere.
We also need greater cooperation within the health-care system and between the health and social services sectors. Patients are people first, with medical, psychological and social needs that should be supported to help them and their babies get a good start in life. Research in the areas of cancer and cardiovascular disease has shown the value of multidisciplinary, patient-centred care that has a formal structure to bring together the many providers involved in a patient’s care. We require similar processes for pregnancy care when patients have additional needs. As put succinctly by one of the physicians we interviewed, pregnant people “have other organs in their bodies” that can require attention!
Finally, we call for better patient-facing resources for people with disabilities that provide clear, accessible information. We recently worked with the Provincial Council for Maternal and Child Health to create a broad patient resource on disability and pregnancy. However, more detailed information is needed to address patient questions about specific topics like medication use, labour and birth options and breastfeeding.
With one in eight pregnancies being to people with disabilities, the time to act is now. People with disabilities need inclusive, accessible pregnancy care that treats them with respect, dignity and acceptance.
