The American Community Survey:

Changing Content for Changing Needs

Disability Briefing

National Council on Disability

February 8, 2024

Tasha Boone

 Assistant Director for Decennial Census Programs

Donna Daily

 Chief, American Community Survey Office

Julie D. Weeks, Ph.D.

Chief, Measures Research and Evaluation

National Center for Health Statistics
Agenda Items

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1. Why does the ACS include this content?

2. What was proposed for change in content?

3. Where we are in the process?

4. What are the issues and how are they being addressed?

5. What are the next steps related to this content?
Why does the 

ACS include 

questions on 

functioning 

disability?

• The ACS is collects information on functioning and disability to help 

governments and communities enforce laws, regulations, and policies.

• The information provides a consistent approach with international standards 

for disability conceptualization and measurement.

• Based on the 2014 Content Review, the Federal agencies that use the 

disability data for their programmatic needs are:

• Department of Health and Human Services

• Department of Housing and Urban Development

• Department of the Interior

• Department of Justice

• Department of Labor

• Department of Transportation

• Department of Veteran’s Affairs

• Environmental Protection Agency

• Equal Employment Opportunity Commission

• National Science Foundation

• National Telecommunications and Information Administration

• Social Security Administration

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How do 

changes to the 

ACS occur?

• The ACS is a key data source for numerous Federal statistical agencies and 

other executive branch agencies

• The Federal statistical system is a steward of the ACS

• The Interagency Council on Statistical Policy (ICSP) Subcommittee on the ACS 

advises the Chief Statistician of the United States at OMB and the Director of 

the Census Bureau on how the ACS can best fulfill its role in the portfolio of 

federal household surveys and provide the most useful information with the 

least amount of burden.

• Changes to the ACS follow a proscribed process and proposals must meet 

specific decision criteria

• A Federal government agency justifies a need for new survey measurement 

on a specific topic and there are no other sources that could reasonably 

meet the information needs

• Need is determined by:

• Regulatory

• Statutory

• Programmatic

• All proposed content is subject to normal questionnaire development and 

pretesting prior to being considered for inclusion on the ACS

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Proposal Justification

• Assesses difficulties in functioning consistent with current biopsychosocial model of disability (ICF)

• Provides programmatic requirements for disability data

• National Health Interview Survey – National Health Survey Act of 1956 provided for a continuing survey and 

special studies to secure accurate and current statistical information on the amount, distribution, and effects of 

illness and disability in the United States

• Greater granularity – level of functional difficulty and severity, not simply the presence of any functional 

difficulty

• Comparability with other data collections

• National Health Interview Survey (since 2010), National Health and Nutrition Examination Survey (since 2019), 

National Survey of Family Growth, Pulse, field testing for inclusion in other federal surveys, over 70 Multiple 

Indicator Cluster Surveys (UNICEF), all USAID collections including the Demographic and Health Surveys, the 

World Bank Living Standards Measurement Survey and programs, censuses and surveys collected in over 125 

countries (to date)

• Consistent approach with international standards for disability measurement and disaggregation

• Allows for cross-culturally comparable comparisons of U.S. with other countries

• Meets UN Principles and Recommendations for Population and Housing Surveys (UNSD P&R rev. 3, UNECE)

• Meets international reporting requirements (such as 2030 Sustainable Development Goals)
WG-SS Widely Tested

The WG-SS has been rigorously tested, both cognitively and in the field, in multiple languages

and in multiple countries...

• The development of the WG-SS began with a review of existing disability questions, including, questions used in censuses and 

surveys. Based on the results of cognitive testing, individual questions were either modified or abandoned.

• Multiple rounds of cognitive testing were carried out in 2006 in fifteen countries: Congo, Egypt, Gambia, India, Kenya, 

Lesotho, Mauritius, Philippines, Uganda, Mexico, Tanzania, Vietnam, Argentina, Brazil, and Paraguay. 

• An overview of cognitive testing results can be found here: Miller K, et al. 2011. Results of Cross-National Structured Cognitive 

Interviewing Protocol to Test Measures of Disability. Quality & Quantity. 45(4):801-815. Available here: 

https://link.springer.com/article/10.1007/s11135-010-9370-4

• Additional testing was carried out under the auspices of the Budapest Initiative. In this round of testing, interviews were 

conducted in English, French and Spanish in seven countries: Bulgaria, Germany, Portugal, Spain, Switzerland, the US and UK.

• More information on the findings in this round of testing can be found here: 

https://wwwn.cdc.gov/QBANK/report/Miller_NCHS_2008BudapestReport.pdf#page=16

• Field and cognitive testing of the WG Extended Set on Functioning, which includes the WG-SS, were undertaken by Cambodia, 

Kazakhstan, Maldives, Mongolia, the Philippines and Sri Lanka in 2009. 

• An overview of the testing results can be found here: United Nations Economic and Social Commission for Asia and 

the Pacific. 2006. Results of the Testing of the ESCAP/WG Question Set on Disability. http://www.washingtongroupdisability.com/wp-content/uploads/2016/01/ResultsoftheTestingoftheESCAP-WGQuestionSetonDisability.pdf

• Additional resources with information on the methodologies and results of WG question testing may be found here: 

http://www.washingtongroup-disability.com/methodology-and-research/testing-methodology/
NCHS Proposal for Disability Content Change

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The revision: 1) eliminates the words “deaf”, “blind” and “serious”; 2) changes the number of response categories 

from two to four; and 3) adds a question on communication functioning.
Where are we in the Process?

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Proposal

A federal agency proposes a new or 

changed question.

Requests undergo legal, technical, 

and policy review.

OMB, Census Bureau, and the 

Interagency Council on Statistical 

Policy (ICSP) Subcommittee on the 

ACS (SACS) decide whether the 

change has merit.

Testing

Interagency topical subcommittees 

are formed to develop wording 

options for cognitive testing.

Federal register notice posted to 

announce question performance will 

be evaluated in a field test.

Evaluation

Test results are reviewed by the 

Census Bureau and requesting 

federal agency.

The Census Bureau solicits public 

comment through a Federal Register 

Notice.

Decision

In consultation with the OMB and 

ICSP-SACS, decisions are made on 

what changes will be included in the 

OMB clearance package.

A final decision is made by OMB.

If approved, the Census Bureau 

implements the change.

Note: The Paperwork Reduction Act requires OMB approval of data collection that would impose a 

burden on the American public. It also requires a public comments period via the Federal Register.
Common Issues Raised on Disability

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• Need for more comprehensive public engagement

• Concern that existing and proposed questions do not include more or all types of 

disabilities (for example, measures do not capture long COVID diagnoses)

• Concern regarding break in series, a gap in data availability and comparisons across 

measures

• Requests for more estimates that reflect the WG-SS graded response categories, 

including: no difficulty, some difficulty, a lot of difficulty, and cannot do at all

• Requests for a different cutoff, concern that the proposed use of the international 

standard cutoff for disability, which does not include people reporting “some 

difficulty,” would decrease the estimate of people living with disabilities

• Concern that the proposed change in data will impact program funding and services
Current & Recent Engagement

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• September 21 – Presented test results to the Census Scientific Advisory Committee

• November 16 – Presented test results to the Census National Advisory Committee

• December 6 — Briefing with the Leadership Conference Coalition 

• December 8 — Director met with disability stakeholders

• December 14 — Presentation at the White House’s Office of Public Engagement’s 

biweekly aging and disability community call

• January 19 — Census and NCHS met with staff from the Senate Subcommittee on 

Health, Education, Labor, and Pensions and the Subcommittee on Aging

• February 8 — Census and NCHS meet with the National Council on Disability

• A few individual stakeholder letters to the Director received and responses sent

• Meetings with other federal agencies and ICSP
ACS Disability Stakeholder Meeting

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• Comments were received from:

• Over 150 organizations

• 20 local & state governmental groups

• Over 300 people with university 

affiliation

• Thousands of people with disabilities

• Several federal agencies

• Some were part of the disability 

interagency subcommittee for the 

test

• Some were not part of the 

interagency subcommittee and were 

not involved in the content test

We will soon convene an all-day 

hybrid meeting in early Spring.

Objectives of the Meeting:

• Provide clarification about the ACS 

proposed question

• Address concerns raised in the FRN

• Develop a path forward for 

understanding the holistic data 

needs for this community.
Additional Communication Plans

Ongoing

• Briefings with partners and 

stakeholders across government and 

beyond, including with disability 

community

February 2024

• Blog published announcing current 

disability content plans to the public

March 2024

• Stakeholder meeting(s) planning

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April 2024

• Publish 2025 ACS 30-day FRN to solicit

final round of public input on the 2025

ACS content changes

May 2024

• OMB review and approval of 2025 ACS 

content changes
Thank You

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