Yesterday, I posted an Action Alert on Twitter about the US Census’ intent to modify the definition of disability in a way that provides less complete data. I’ve pasted it below, and I want to also use this space to outline what the changes are, why they’re bad, and what to say if you file a Federal Register comment or send an email submission for the upcoming hearing.

Note: As a paralegal student, I am strictly prohibited from giving legal advice or opinion. No content of this post should be construed as such, as I am not an attorney.

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Brief:

Original Action Alert:

Action alert: The US Census has issued a notice of its intent to change how disability data is collected by changing the definition of disability. These far-reaching changes would fundamentally alter disability data accessible to researchers, scholars, and community members.

WHAT YOU CAN DO: Submit a public comment to the Census National Advisory Committee before November 16 at noon EST. HOW? Email a short message (readable in under 2 minutes) by the deadline to [email protected] with the subject line 2023 NAC Fall Meeting Public Comment.

WHAT YOU CAN DO 2: Respond to the current Federal Register request for comment before December 19. HOW? Go to the Federal Register Docket here, Click “Create Formal Comment.” Note that anything you place in the Comment box will be made public. Enter your email, select your type (Individual, Organization, or Anonymus), fill in any additional information, check the box for understanding, then click Submit.

Let’s keep accurate data flowing to those who need it most to better represent our community!

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In-Depth:

What’s Happening?

According to Dr. Bonnielin Swenor of the Johns Hopkins Disability Health Research Center here, the Census Bureau is changing the set of questions from the American Community Survey (ACS) to the Washington Group Short Set (WGSS) of questions. This change will reduce the national disability estimates from 14% to 8%, which will negatively impact disabled people. More shockingly, these changes have moved forward without the input of the disability community.

Swenor, in a letter to the Census Bureau, cosigned by six other disabled and disability data scholars, notes “Although the ACS and WGSS questions have known limitations and undercount or exclude
many groups of disabled people, there is overwhelming evidence that the ACS disability
questions outperform the WGSS.” Swenor also notes particularly concerning acknowledgments by members of the Census Advisory Committee that these changes will produce lower disability prevalence estimates than the ACS questions and notes that the WGSS questions method of “assessing disability is not widely supported within the societal context of disability in the United States.”

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Why it Matters:

Data on disability rates in the United States are quintessential to keep up with for academic, medical, government decision-making, and community purposes. These changes, as Dr. Swenor notes in her letter, will lower the rate of disability prevalence in the US. The current 14% of disabled people will be reduced to 8%, and the data collected from 2020 does not reflect the significant portion of people disabled by Long COVID or the ongoing pandemic.

Changing the metric now will further undercount disabled people at a time when we should have complete, accurate, and evolving data that reflects the reality of the moment.

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What Can You Do?

1. Email a brief public comment to be read at the Census Advisory Committee meeting before November 16 at Noon EST.

Your short message (verbally readable in under two minutes) must be emailed to [email protected] with the subject line “2023 NAC Fall Meeting Public Comment” before November 16 at Noon EST. It will be read live during the meeting on November 17 and will be made public on the National Advisory Committee Fall Meeting: November 16-17, 2023 webpage here.

It is important to note that submissions through this venue are immediately made public upon receipt, so be sure to remove any personally identifiable or confidential information (phone number or email address).

Sample Message:

“We need accurate, complete disability data to continue and as a disabled person, I ask the Census Bureau not to make changes to the definition of disability.”

2. Submit a comment to the Federal Register Request for Comment before December 19 at 11:59 p.m. EST.

By law, anytime a federal agency wants to make a change, they have to put a notice in the Federal Register (big book) informing the public of the change they intend to make and allow comments from the public on it. This period is typically 60 days long.

This is where you should submit more detailed comments. To submit a comment, click the green “Submit a Formal Comment” button on this page.

In your comment, consider including:

• Your relation to the issue (disabled person, non-disabled ally, academic, doctor, etc). Also include any relevant credentials in this area (MD, Disability Advocate, etc)
• An explanation of why you oppose the change of metrics.
• The impact this change may have on you/the community.

The Regulations.gov Commenter Checklist (republished and linked to from the Administrative Conference for the United States) here includes the above recommendations I’ve outlined to be particularly relevant, plus additional suggestions.

A brief note about form letters and decision-making by federal agencies, pulled from the Commenter Checklist, for emphasis: “Many in the public mistakenly believe that their submitted form letter constitutes a “vote” regarding the issues concerning them. Although public support or opposition may help guide important public policies, agencies make determinations for a proposed action based on sound reasoning and scientific evidence rather than a majority of votes. A single, well-supported comment may carry more weight than a thousand form letters.”

I implore you to use data in your comments. I’d recommend Dr. Swenor’s letter and her attached data linked above as a good starting point for data-searching. Don’t cut and paste from that letter, but allow the data she and her colleagues use to guide you in your own conclusion and back up your claim.

Make your comment:

• individualized to state your beliefs on the proposed changes,
• complete, and
• relevant to the regulation only

Do not include personal information or profanity, as this can result in your comment not being published publicly.

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Let’s keep accurate data flowing to those who need it most to better represent our community!