National AccessAbility Week promotes inclusion and access for people with disabilities in all aspects of life. However, one area where people with disabilities often feel invisible and excluded is pregnancy care.
As a team of researchers, clinicians, and people with lived experience of disability, we have heard concerning stories about the experiences of pregnant individuals with disabilities.
There are accounts of exam tables and weight scales in obstetricians’ offices that cannot accommodate those using mobility devices, and communication problems arise when American Sign Language interpreters are not made available during labor and birth. Many people report a confusing patchwork of health and social services that is difficult to navigate.
A report released today by ICES describes the pregnancy outcomes and health care experiences of people with disabilities in Ontario. Using anonymized health records for 150,000 pregnant people with disabilities, the report found that while many had healthy pregnancies and babies, they were more likely than those without disabilities to experience a range of pregnancy complications. These included more frequent visits to emergency departments, higher hospitalization rates during pregnancy and postpartum, and a higher likelihood of preterm births.
In in-depth interviews with over 60 people with disabilities, service providers, and policymakers, we found examples of positive pregnancy care experiences. However, many also highlighted how inaccessible pregnancy care can be for people with disabilities.
One blind participant shared her struggle with gestational diabetes, having to use a sight-dependent test to check her blood glucose several times a day. Another participant recalled an obstetrician who, upon seeing her wheelchair, assumed she was there for an abortion, despite her and her partner’s year-long efforts to conceive. A participant with a developmental disability tried to hide her disability out of fear of judgment from healthcare providers.
Many participants noted that advocating for themselves in healthcare settings was one of the few resources available to them. Service providers and policymakers cited structural barriers to accessible pregnancy care, including a lack of time during appointments to address patients’ needs, insufficient funding for accessible equipment, inadequate disability-related training and education, and a lack of clinical guidelines for caring for this population.
People with disabilities did not feel seen in our pregnancy care system. While 13 percent of all pregnancies in Ontario involve individuals with a physical, sensory, or developmental disability, current clinical supports are not designed to include them.
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 healthcare, and studies show that meaningful interactions with patients with disabilities during training can combat ableist attitudes. These concepts should be integrated into equity, diversity, and inclusion efforts currently being incorporated into many healthcare provider education programs in Canada.
We need a greater focus on accessibility in pregnancy care settings, including both physical and communication-related accessibility. Groundbreaking clinics like the Accessible Care Pregnancy Clinic at Sunnybrook Health Sciences Centre demonstrate how this can be done well, and similar clinics could be established elsewhere.
Greater cooperation within the healthcare system and between the health and social services sectors is also necessary. Patients have medical, psychological, and social needs that should be supported to help them and their babies get a good start in life. Research in cancer and cardiovascular disease has shown the value of multidisciplinary, patient-centered care with formal structures to coordinate care among various providers. Similar processes are required for pregnancy care when patients have additional needs.
Finally, better patient-facing resources are needed for people with disabilities, providing clear, accessible information. We recently collaborated 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 on specific topics like medication use, labor and birth options, and breastfeeding.
With one in eight pregnancies involving 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.
