Why Does Taking Part in the Census Matter for People with Disabilities?

/ March 3, 2020

By Janet Shouse

Ok, folks, grab a big cup of coffee or one of those high-energy drinks, because today’s topic may seem like a real snoozer. But it’s very important! It’s the 2020 census.

I’m sure all of us have heard how vital it is for the federal government to get an accurate count of every person in the United States, and we may have heard more about this year’s census because there had been a controversary regarding a possible citizenship question. (There is no citizenship question.) But the bottom line for our community is that the Census Bureau regards people with disabilities as a hard-to-count group. And not being counted could be costly for people with disabilities.

Why does the census matter for people with disabilities? This count of people living in the U.S. helps direct more than $800 BILLION a year in federal funding, including funding to state and local governments for Medicaid/TennCare, Vocational Rehabilitation programs, housing vouchers, education programs, and the Supplemental Nutrition Assistant Program or SNAP. These are supports and services that are key for many people with disabilities.

In addition to the funding issues, the census data is used to determine how many representatives each state will get in the U.S. House of Representatives. Communities or groups that are undercounted will not get their fair share of federal funding or political representation.

The Census Bureau will begin sending out notices this month (March 2020). Most households will be asked to respond online but will also have the options of responding by phone or by mail. Braille and large-print versions will be available for those who need that accommodation. The Census Bureau is also offering language guides in 59 languages, including an American Sign Language video.

The main Census Bureau information can be found at https://2020census.gov/

If people do not respond (or self-report, as the Census Bureau calls it), census takers will come in person to ask the census questions.

Several national disability organizations, including The Arc of the U.S. and the National Disability Rights Network, have resources specifically for people with disabilities to help people understand the importance of the census to them. These resources explain what kinds of questions the census asks, the fact that your answers are kept private, and how to recognize the real census forms and real census takers from possible fake ones.

Here are links to some of those resources:

Among the challenges of getting people with disabilities to respond to what some may consider intrusive questions are suspicions of the government in general or fears that personal information will be used to determine their eligibility for government programs. People with mental health conditions in particular may distrust the government based on past experiences with involuntary treatment or the criminalization of behavior associated with their mental health conditions.

One possible challenge that I did not see mentioned, but that occurred to as I thought about the importance of the census for those with disabilities is the responsibility that would rest with community provider agencies supporting people in small residential settings. While the Census Bureau has what is called the Group Quarters operation, which counts people in skilled nursing facilities, residential treatment centers, college dormitories, prisons, military barracks, vocational training facilities and shelters for those who are homeless, this doesn’t appear to include settings where three or four people live together. And someone in that household or the provider must take the responsibility for completing the census form for those three or four people.

An undercount is costly for all of us.

The Census Bureau is making a huge effort to get everyone involved, and it has created a website specifically for that purpose: https://censuscounts.org/

We, as stakeholders in the disability community, need to make sure that we all get counted.

If you’ve read this far, thank you! You know what to do — fill out your census forms! And if you have connections with people with disabilities, I would love it if you would share this blog post. And as always, if you have questions or concerns, email me at janet.shouse@vumc.org.

Janet Shouse smilingJanet Shouse is a parent of a young adult with autism, and she is passionate about inclusion, employment of people with disabilities, medical issues related to developmental disabilities, supports and services, public policy, legislative initiatives, advocacy, and the intersection of faith and disability. She wears many hats at the Vanderbilt Kennedy Center, including one as a disability employment specialist for TennesseeWorks.

March 3, 2020

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