In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. Those challenges get far more intense during disasters. And coronavirus is proving to be the biggest disaster of all.
The pandemic response has been data-driven. Counts of the number of Covid-19 tests, infections, and mortality have been essential in shaping public health policies and response efforts. But for people with disabilities, which includes more than 61 million American adults, barriers to getting tested or accessing health care mean data from this group are less likely to be included in surveillance estimates. This creates a bias in the overall Covid-19 data that has ramifications for everyone, as this skew in the Covid-19 national estimates can misguide response efforts.
Tracking Covid-19 among people with disabilities is also limited by the lack, or inadequacy, of data reported by states. State-level data is used to create Covid-19 surveillance curves, making it a powerful tool in directing the pandemic response. Although state-reported data comes from various sources, it is largely derived from medical record information, including Covid-19 testing, hospitalization, and mortality statistics.
But consider the last time you were at the doctor. You were likely asked your age, gender identity, race, ethnicity, and even marital status. Were also asked if you have a disability? The answer is likely “no.” Information on disability is not often collected in health care settings. This has implications for patient outcomes but is also a missed opportunity for the national pandemic response. Although people with disabilities are at high risk for Covid-19, this information gap makes it almost impossible to develop strategies to reduce that risk.