‘One of the things we know about the IDD community themselves is that they are often not listened to when they find themselves in medical settings.”
AUSTIN (KXAN) — The U.S Census Bureau announced it is backing away from a change to how it counts people with disabilities.
“The numbers that the Census collects ties into how… the ADEA (Age Discrimination in Employment Act) is enforced, the way your social security is calculated,” Robert Cokley with the Robert Wood Johnson Foundation said. “So it’s really important that we take a very serious look at the approach we use to make this count.”
The yearly survey asks people to answer “yes” or “no” to a series of disabilities. The Census Bureau recommended people rate their difficulty instead.
“This is a really sort of dangerous thing to take on,” Cokley said.
Those who answer they have “a lot of difficulty” or “cannot do at all” would be considered disabled.
“People with disabilities are already undercounted in places like health care and across like many other places, like workplaces,” Cokley said.
Even with the Census Bureau backing away from changing the survey, advocates suggest more inclusivity is needed to help count people with intellectual and developmental disabilities.
“One of the things we know about the IDD community themselves is that they are often not listened to when they find themselves in medical settings,” Cokley said. “They often have care that is reactive instead of proactive, meaning folks will sort of address issues that they came up with as a response rather than teaching them about wellness, about planning, and about good care in the long term.”
The Robert Wood Johnson Foundation argues people with intellectual and developmental disabilities are more likely to experience adverse socioeconomic outcomes including increased health complications, higher poverty rates, lack of employment, education opportunities and increased costs of living.
“More than anything, we want to follow one of the main tenants of the entirety of the disability community: nothing about us without us,” Cokley said. “That means, in this sense, to make sure that doctors, nurses, decision-makers, policymakers are working with the disability community as they craft these ideas, these policies and these practices that will ultimately be the benefit for everyone.”