As mandated in Article I, Section 2 of the U.S. Constitution, a total population count is required every ten years. Since the launch of the first census in 1790, the need for accurate and representative information regarding the U.S. population became increasingly important.
Throughout the nineteenth century, the decennial census (i.e., a population count recurring every ten years) gradually expanded to encompass hundreds of topics pertaining to America’s demographic, agricultural, and economic information. Realizing the growing breadth and depth of the decennial census, Congress passed legislation that created a permanent Census Office within the Department of the Interior on March 6, 1902. In 1903, the Census Office was transferred to the Department of Commerce and Labor, officially joining the Department of Commerce (DOC) when the Department of Commerce and Labor split into two separate departments in 1913.[i]
As a principal agency of the U.S. Federal Statistical System, the U.S. Census Bureau is responsible for collecting and producing data about people living in America. The agency’s primary mission is to conduct a total population count every ten years via the decennial census Additionally, the U.S. Census Bureau conducts over 130 surveys and programs a year, such as the American Community Survey (ACS), U.S. Economic Survey, and Current Population Survey (CPS).[ii]
What is the decennial census?
Taking place every ten years, the decennial census, also known as the Population and Housing Census, is set to count every resident in the United States of America.[iii] Because the decennial census is the largest operation conducted in the nation, the U.S. Census Bureau conducts extensive research, planning, and development in the years leading up to each decennial census. For the 2020 Census, the U.S. Census Bureau focused their efforts on increasing self-response rates via encouraging Internet participation and adopting measures to decrease census-taker workload and increase productivity.[iv]
A decennial census only needs to be completed by one person per household. The questionnaire asked questions pertaining to name, age, sex, race.
Screenshot of a sample 2020 Census questionnaire
Although there are not any specific questions related to disability in the decennial census, it is vital that people with disabilities respond to the survey to ensure they are represented in federal datasets for the next decade. The data collected determines Congressional districts, how federal funds are distributed, where legislative, school, transportation, and voting boundaries are set, and provides meaningful insights on who makes up our population (i.e., demographic information) and where we are going as a nation. There is a clear need for extracting meaningful findings concerning people with disabilities from population data, including the decennial census, American Community Survey (ACS), and other federal datasets.
NDRN, Protection & Advocacy Systems and the 2020 Census
The 2020 Census, America’s most recent decennial census, was one of a kind. It endured a global pandemic, numerous natural disasters and emergencies, and an ever-polarized American political climate. Despite all of this, U.S. Census Bureau staff, advocates, and the public, stepped up and advocated for a fair and accurate census that represented every community in America.
During the decade leading up to the count, civil rights organizations, community leaders, U.S. Census Bureau staff, grassroot organizations, and census advocates tirelessly worked to ensure an equitable decennial count. Decisions had to be made, questions had to be set, court battles were fought (and still are), and America was well on its way to start the once in a decade population count in order to set the stage for the next ten years. Yet, little engagement had been made to include people with disabilities.
Many individuals working to ensure an accurate and fair count were under the impression that many members of the disability community were going to be counted throughout the Group Quarter (GQ) enumeration process, and therefore required little engagement from census advocates. This misconception, led local, state, and national disability organizations, including NDRN, to spring into action as individuals with disabilities are a part of every community and represent a large part of the U.S. population from across the country, not just those in group quarter living situations, and needed to be included in all 2020 Census-related discussions and plans to ensure a fair, accurate, and accessible decennial count.
Throughout 2019 and in the early months of 2020 before the official count, NDRN worked closely with the U.S. Census Bureau and disability and civil rights partners to ensure that everyone was included in the 2020 Census discussions and plans. This work included collaborating on accessible materials, such as Braille and large-print forms, accessible web portals; researching and publishing information and material relevant to the disability community; conducting social media campaigns; and advocating for people with disabilities to have a voice in a fair, accurate, and accessible 2020 Census. NDRN also hosted (in-person and virtual) events and webinars about the importance of the disability community engaging and participating in national census surveys.
NDRN’s member organizations, P&A agencies, across the country also worked diligently in their state to ensure a fair, accurate and accessible count and learned first-hand how certain assumptions about people with disabilities and operational challenges impacted the 2020 Census count. For instance, Alaska’s P&A, Disability Law Center (DLC) of Alaska, alerted U.S. Census Bureau officials that outdated 2010 data was being used to count people living in Assisted Living Homes (ALHs) in the state. DLC helped the U.S. Census Bureau update the information and made sure the missing ALHs received the GQ enumeration packet in time to be counted. If it were not for DLC, hundreds of people in Alaska could have been missed in the 2020 Census emphasizing the need to collaborate with local organizations to ensure people are not missed or undercounted in the 2020 Census.
2020 Census Results
After several years of preparation, the 2020 Census count officially launched in Toksook Bay, Alaska on Tuesday, January 21, 2020, to ensure that people living in remote areas were accurately represented in the process.[v]
Despite the hardships that accompanied 2020 – including the COVID-19 global pandemic, natural disasters, civil unrest, etc. – the U.S. Census Bureau and partners worked tirelessly to ensure a fair and accurate count. Even with the challenges, Census takers strived to be as flexible, practical, and persistent as possible to ensure the best results. According to the 2020 Census Apportionment Data Release, the 2020 Census represented the largest participation movement ever witnessed in our country.[vi]
For the first time in all of census history, participants had the option to answer the census online or by phone, in addition to the traditional method of submitting their census survey form via mail. Starting March 12, 2020, the public was invited to respond to the survey at my2020census.gov and by phone and mail. The survey was offered in American Sign Language and 46 other non-English languages and included more accessibility options (including Braille and large print Census completion guides).[vii] By October 16, 2020, 99.9% of household addresses nationwide had been accounted for in the 2020 Census. Approximately 67.0% of survey responses were completed through self-response online, by phone, or by mail (higher than the self-response rate of 2010), and 32.9% were accounted for through the Nonresponse Followup (NRFU) operation, the final 2020 Census data collection operation to count households that had not yet responded to the survey.[viii] If a household did not respond after one or more census taker visits, the census takers used high-quality administrative records (when available) to count people who did not self-respond to the 2020 Census. High quality records include alternative data sources such as tax, Medicare and Medicaid records, Social Security Administration (SSA) information, and 2010 Census data which census takers checked against these alternative data sources to see if they provided the same information for that address.[ix] If all of that didn’t work, they attempted to get information from a neighbor.
Even though the count has ceased, the data from the 2020 Census will affect communities across the country over the next decade. The count was just the beginning.
The United States experienced the second slowest population growth (an increase of 7.4% between the years 2010-2020) in U.S. history, with a total population count of 331,449,281 for the year 2020. States with the largest population count (between 10 and 40 million) include California, Texas, Florida, New York, Pennsylvania, Illinois, Ohio, Georgia, North Carolina, and Michigan. States with the smallest population count (between 0.5 million and 1.4 million) include Wyoming, Vermont, Alaska, North Dakota, South Dakota, Delaware, Montana, Rhode Island, Maine, and New Hampshire.[x]
At the 2020 Apportionment Data Release Conference, it was revealed that while 37 states will keep the same number of seats in the U.S. House of Representatives, 6 states will gain seats, and seven states will each lose one seat.[xi] This is especially important to people with disabilities as changes in congressional seating impact the social, economic, and political representation of the disability community, influencing the federal programming and support they might receive or lose.[xii]
Redistricting Data Release
Populations are constantly changing. It’s important that an area’s legislative bodies – Members of Congress, state legislators, county, and municipal officials – accurately represent that area. Redistricting is the act of organizing an area into new and appropriate political districts. It affects political power (i.e., who calls the shots, what issues a legislature will address/ignore, and which parties have the upper hand in government), and whether diverse communities are properly represented.
On August 12, 2021, the U.S. Census Bureau released a “legacy format” redistricting toolkit containing detailed data informing state and local governments on how to redraw electoral boundaries. A more user-friendly format of this same data was released in late September 2021. Stakeholders can use this information to evaluate local demographic data and compare it with their own sample-based surveys to see if the results align with their demographic projections (location, size, and characteristics of their local communities).[xiii]
The redistricting data release offers a preliminary snapshot of demographic trends and information of the nation by state, county, and city. Some of the characteristics include race and ethnicity, population 18 years and older, occupied, and vacant housing units, people living in group quarters such as nursing homes, prisons, military barracks, and college dormitories.
What to Look for Next
NDRN looks forward to exploring the upcoming 2020 Census data release which will include important population demographic information, such as statistics on age, sex, and race and ethnicity. Recognizing that disability is a natural part of life and is a part of every single community, NDRN values the importance of this information.
Once the data are released, the U.S. Census Bureau will continue quality checks to ensure the accuracy and quality of data collection and processing. The 2020 Census can be evaluated through comparing the results to other population totals and checking to see how well the process of conducting the census worked. Census workers are currently conducting Post-Enumeration Surveys[xiv] with preliminary results expected to be released in November 2021, as well as Demographic Analysis Surveys[xv] which will compare census results to other ways of measuring the population.
American Community Survey
The American Community Survey (ACS) is an ongoing survey that provides information about the United States and its people, through generating data that – along with the decennial census – helps determine how nearly $700 billion in federal and state funds are managed on a yearly basis. The data collected provides public planners, officials, and entrepreneurs with yearly insights on jobs and occupations, educational attainment, veteran status, whether people own or rent their homes, and other social, housing, economic, and demographic topics including disability status. The latest data release also displays 1-year, 3-year, and 5-year estimates for the nation, which can be used accordingly for analyzing trends across various population sizes.[xvi]
Screenshot of a sample ACS questionnaire
The ACS inquiries about six aspects of disability including hearing, vision, cognitive, ambulatory, self-care, and independent living). This information is especially helpful because it can measure overall disability numbers and be used to identify populations with specific aspects of disability.
What is the difference between the American Community Survey and the decennial census?
While both the ACS and the decennial census provide local and national leaders with essential programming and planning information, they are different. The ACS tells us how we live – providing information on our education, housing, jobs, and more – to provide insights on the social and economic needs of our communities each year. The decennial census is conducted every ten years, and provides an official population count for Congress.[xvii]
The ACS is conducted every month, every year, whereas the decennial census is conducted every ten years. The ACS is much smaller in scale and is sent to a sample of addresses (approximately 3.5 million per year) in the 50 states, District of Columbia, and Puerto Rico.[xviii] The decennial census, on the other hand counts every living person in the 50 states, District of Columbia, Puerto Rico and the four U.S. territories. The scope of questions asked also differs between these two surveys. The ACS is more thorough, asking about topics not included on the decennial census, including education, employment, internet access, and transportation. “The ACS can provide more up-to-date information on hospitals and schools, insights on how to best support school lunch programs, improve emergency services, build bridges, and inform businesses looking to add jobs and expand to new markets, and much more.” The decennial census, on the other hand, asks a much smaller range of questions, such as age, sex, race, Hispanic origin, and owner/renter status. The ACS also provides information to communities and local and national leaders every year regarding economic development, emergency management, and understanding local conditions and issues. The decennial census provides an official count to the population and provides essential information that lawmakers can use to provide daily services and support for communities.[xix]
It is important to fill out both the ACS and decennial census because both surveys help communities develop the most effective plans for the future.
Current Population Survey
The Current Population Survey (CPS) is an initiative sponsored jointly by the U.S. Census Bureau, and the U.S. Bureau of Labor Statistics (BLS). The Current Population Survey is the leading source of labor force population data in the United States.
The questionnaire for the labor force portion of the CPS interview is computerized and consists of more than 200 questions. It is administered by U.S. Census Bureau field representatives across the country through in person and telephone interviews, as well as at the U.S. Census Bureau’s two centralized collection facilities located in Jeffersonville, Indiana and Tucson, Arizona. The questionnaire abides by a complex skip system using the responses to several questions to ensure that respondents are only asked a small set of questions about themselves, on average taking participants about 6 minutes to complete.[xx]
The U.S. Census Bureau uses a probability selected sample of about 60,000 occupied households to administer the survey to. Individuals must be 15 years of age or over and not in the Armed Forces to meet eligibility requirements. Due to child labor laws, the BLS typically publishes labor force data that is only applicable to people aged 16 and older. Unfortunately, people in institutions, such as prisons, long-term care hospitals, and nursing homes are ineligible to be interviewed in the CPS, which could exclude a significant number of people with disabilities.[xxi]
Beyond surveying for labor force information, the CPS also includes additional questions that address other areas of interest – such as annual work activity and income, veteran status, school enrollment, worker displacement – for labor market analysts. In addition, because the survey has a large sample size and covers a broad range of participants, the CPS supplements are often used to collect data on topics that don’t fall directly within the traditional realm of what one might expect regarding labor force information, including expectation of family size, tobacco use, computer use, and voting patterns.[xxii]
Screenshot of CPS interview questions
Like the ACS, the CPS collects information on various aspects of disability including hearing difficulty, vision difficulty, cognitive difficulty, ambulatory difficulty, self-care difficulty, and independent living difficulty.
The CPS also conducts an Annual Social and Economic Supplement (ASEC) which asks additional questions that provide information on disabilities impacting employment or work. The U.S. Census Bureau disclaims that the questions of the CPS ASEC were not designed to measure disability specifically, but “rather, the questions were intended to measure labor force status or capture certain income sources.”[xxiii] They strongly recommend that individuals who are interested in using CPS ASEC to measure work disability to take caution and consider the Uses and Limitations of CPS Data on Work Disability when using this data source.
Survey of Income and Program Participation
The Survey of Income and Program Participation (SIPP) is a household-based survey that provides information for income and program participation, through collecting data and gauging change for many important datapoints including economic well-being, family dynamics, education, assets, health insurance, childcare, and food security. SIPP is a longitudinal study, designed as a continuous series of national panels, with each panel reflecting a nationally representative sample interviewed over a multi-year period lasting for about three to five years.[xxiv]
Like the ACS, decennial census, and CPS, SIPP provides data on a broad range of topics. SIPP is unique in that it allows for the integration and evaluation of information for separate topics to form a single, unified database. Since its establishment in 1983, SIPP has been able to provide meaningful insights on America’s economic well-being and changes to our nation’s economics over time. SIPP data can examine several demographic characteristics that exist within the interactions between tax, transfer, and other government and private sector policies to evaluate the distribution of income and the success of government assistance programs.[xxv]
SIPP data is also used to evaluate the effectiveness of federal, state, and local government programs through providing a nationally representative sample for “evaluating annual and sub-annual income dynamics, movements into and out of government transfer programs, family and social context of individuals and households, and interactions among these items. A major use of the SIPP has been to evaluate the use of and eligibility for government programs and to analyze the impacts of options for modifying them.”[xxvi]
Questions used to measure disability in the 2014 SIPP
While SIPP’s disability measures cover a broad range of activities (such as use of assistive aids, difficulty working at a job or business, and limitations in functional activities), SIPP is limited as a data source due to the small sample size of the survey. Because of the range of definitions federal agencies use to classify disability status, researchers should make note of SIPP’s classifying characteristics to ensure that this survey best suits their research needs.
How to Navigate Data
In addition to having access to federal statistics, many stakeholders – primarily disability rights advocates – may benefit from getting information at the municipal and regional levels. For example, acquiring information about the number of people with mobility disabilities in a specific geographic area can be helpful in providing advocates with the necessary information to convince their representatives to allocate adequate funding towards accessible public transportation and housing.[xxvii]
As of January 1, 2013, the U.S. Census Bureau currently has six active regional offices that are responsible for geographically specific data collection and dissemination. These offices serve as the primary point of contact for local media and organizations. Through conducting continuous surveys and engaging regularly in field research, the Regional Offices offer up-to-date statistics on people, places, and the economy. Interested stakeholders can contact their regional offices with specific queries. Appropriate Regional Office contact information can be found on the U.S. Census Bureau’s website.[xxviii]