Comments Providing Information for Better Capturing People With Disabilities in U.S. Census Surveillance

November 15, 2022
via e-mail to DCMD.2030.Research@census.gov

Shannon Wink
Program Analyst
Policy Coordination Office, U.S. Census Bureau
U.S. Department of Commerce

RE: Soliciting Input or Suggestions on 2030 Census Preliminary Research, FR Doc. 2022-17647

Dear Ms. Wink:

The Disability Rights Education and Defense Fund (“DREDF”) appreciates the opportunity to provide comment on the 2030 Census. We share many of the goals that you have set out in the Solicitation of Input or Suggestions that you published in the FR Doc. 2022-17647 (“Solicitation”). Our comments below will be focusing on the following topics from the Solicitation:

  • Reaching and Motivating Everyone to Respond to the Census
  • How We Contact the Public
  • New Data Sources

DREDF is a national cross-disability law and policy center that protects and advances the civil and human rights of people with disabilities through legal advocacy, training, education, and development of legislation and public policy. In the more than 40 years that have passed since our founding, we have persistently fought for the right of people with disabilities to be fully integrated within all aspects of community life. DREDF’s work is based on the knowledge that people with disabilities of varying ages, racial and ethnic backgrounds, genders, and sexual orientations are fully capable of achieving self-sufficiency and contributing to their communities with access to needed services and supports and the reasonable accommodations and modifications enshrined in U.S. law.

In this letter we are primarily providing information and resources related to better capturing people with disabilities in U.S. census surveillance. However we are also advocating for developing and including questions on sexual orientation, gender identity, and variations on sex characteristics. Lesbian, gay, bisexual, transgender, queer, intersex, and other sexual and gender minorities (LGBTQI+) have never been explicitly enumerated within the US census. The full recognition and inclusion of the LGBTQI+ population, which disproportionately includes people with disabilities,[1] as well as a more accurate accounting of individuals with disabilities who overlap with all other recognized census characteristics, will allow federal health and public health dollars to be more accurately and fairly distributed among groups that have encountered multiple barriers to equally effective healthcare and other public and private services and programs.

Reaching and Motivating Everyone to Respond to the Census

The American Community Survey (ACS) currently has six census questions relating to disability. The questions ask households to self-identify those household members over five years who have a physical, mental, or emotional condition that affects any of six functional capacities relating to hearing, vision, mobility, concentration/memory/decision-making, dressin and bathing, and errands commonly undertaken as part of living independently in the community. These disability questions were first developed in 2008 to achieve population-level estimates of people with disabilities. Subsequently section 4302 of the Affordable Care Act required the federal Department of Health and Human Services (HSS) to develop standards for health care data collection by the federal government and the six ACS questions were adopted as the disability standard.[2]

The Washington Group Short Set (WG-SS), another instrument used for self-identification of people with disabilities, was developed internationally and tested for use in national census and population-based surveys. The WG-SS also has six questions relating to functional disabilities though they are worded somewhat differently. More critically, the WG-SS does not have a question directed at independent living functions, but it includes a question that is focused on communication disabilities that would capture individuals who cannot rely on their speech being consistently understood by others. People with communication disabilities are likely to encounter discrimination across a wide range of services, programs and activities but are often not appropriately identified as they can be mischaracterized as having hearing disabilities, and are also particularly subject to stereotypes concerning their intellectual capacity. While most U.S. federal surveys incorporate the ACS 6, there are some national surveys such as the National Health Interview Survey that use the WG-SS questions.

Recent research reviewed the effectiveness of both the ACS 6 and the WG-SS for identifying all persons with disabilities across a wide range of disabilities. The study authors reviewed existing literature that identifies shortcomings in both instruments and examined answers submitted by people taking the National Survey on Health and Disability (NSHD). The NSHD is administered to working-age adults between 18 and 64 years, and it incorporates both the ACS 6 questions and the WG-SS questions. Respondents are additionally asked an open-ended question about disability and asked to categorize their primary disability under seven possibilities. The NSHD format therefore provides an ideal opportunity for finding out how well each instrument succeeds in capturing the disability population in its entirety, as well as finding out which specific subpopulations of disabled persons might be undercounted. The authors found that “The ACS-6 and WG-SS failed to identify 20 percent and 43 percent, respectively, of respondents who reported disabilities in response to other NSHD questions (a broader WG-SS version missed 4.4 percent of respondents). The ACS-6 and the WG-SS performed especially poorly in capturing respondents with psychiatric disabilities or chronic health conditions.”[3]

Census surveys play a unique and critical role in federal and state decisions on resource allocation and program development. This role justifies the effort put into community-based outreach to populations of color and encouraging households in underserved communities to respond to census surveys. Undercounting of underserved populations only exacerbates an existing insufficiency of services and resources to these communities and perpetuates cycles of poverty, insufficient educational opportunities, poor health care services, and underemployment. This same reasoning applies even more to people with disabilities, a highly heterogenous population experiencing disabilities and conditions that do not remain static over a lifetime, and which have diverse impacts that occur through interaction with a person’s environment. Disability is both a cause and a consequence of poverty, occurring disproportionately among populations groups such as American Indians that are already subject to being undercounted and underserved.[4] When we have evidence that current census questions consistently miss counting significant portions of people with disabilities, we must take steps to correct the problem. This is especially true when two of the subpopulations commonly missed are people with mental health disabilities and people with chronic conditions since both groups were so deeply implicated in health and health care disparities that have either been revealed during the COVID-19 pandemic or made worse as a consequence of it. When we miss identifying people with psychiatric disabilities and chronic health disabilities, we are disproportionately missing the needs of people of color, LGBTQI+ persons, and low-income persons.

The study authors conclude that “[r]esearchers and policy makers must augment or strengthen federal disability questions to improve the accuracy of disability prevalence counts, understanding of health disparities, and planning of appropriate services for a diverse and growing population.” At least two states have already responded to this imperative by developing and testing disability questions that go beyond just the ACS 6 or the WG-SS. In both Oregon and Washington, new laws have been passed that mandate the collection of disability information for health care equity and quality purposes. Oregon’s “REALD” legislation was initiated in 2013, requiring health care providers, facilities, and hospitals to collect information on race, ethnicity, language, and disability.[5] The state drive toward better and more accurate data to achieve equity continues to this day with the incorporation of sexual orientation and gender identity requirements in 2021.[6] The Oregon Health Authority, in turn, has developed regulations that require considerable detail in identifying individuals with disabilities, including questions specific to those with communication disabilities and mental health disabilities.[7] Washington’s law mandating hospitals to collect patient demographic information on discharge (voluntarily provided by the patient) takes effect on January 1, 2023.[8] As reported by the Washington State Hospital Association, the disability  demographic “rules include 12 options for reporting patient experience regarding activities of daily living and 13 options for reporting self-identified disabilities or conditions.”[9] The new requirements are specific to a health care context, which is an arena that can notoriously conflate actionable information about disability status with a medical diagnosis, and both states nonetheless  concluded that accurate demographic information about disability status required much more than a six-question set.

While DREDF is encouraged by state actions to equitably recognize their full disability population and more accurately capture their needs, we call on the Census Bureau to both follow the possibilities of what states have done and assume a leadership role in setting a new national standard for disability population data collection. We make the following recommendations:

  • In the immediate or short-term, add a communication question, akin to the one used in the WG-SS, to the ACS-6 in national surveys.[10] A surface reading of the ACS-6 questions shows that a person who is disabled with a communication disability (i.e., their usual speech is not readily understood by others, or they use an augmentative communication device, or they are not always able to verbalize) but who does not have cognitive, hearing, or other disabilities has no way to categorize their primary disability.
  • Initiate the work of reviewing the ACS-6 disability questions for gaps in their identification of people with disabilities, incorporating findings from researchers and state experts that use a more expansive set of disability questions, and working closely with individuals who have disabilities that are most likely to be excluded from current census disability questions (e.g., people with communication disabilities, people with psychiatric disabilities, people with chronic conditions, people with some developmental disabilities such as autism).
  • Develop additional questions that could be used to identify and include disabled people who would not be identified by the current ACS-6 or WG-SS.
  • Field test augmented sets of questions among people with disabilities, taking care to include people and communities of color, people who have been disabled for many years as well as those who have more recently acquired or aged into disability,  LGBTQI+ persons, and people from diverse socio-economic backgrounds to ensure the questions are culturally appropriate and capture a full range of people with different disabilities, as intended.
  • Foster ongoing periodic review and development of the census disability set of questions, exploring aspects such as how best to identify individuals who have multiple disabilities or present data in ways that will best enable researchers to explore developing trends and the experiences and those who hold multiple characteristics associated with being undercounted in the census and underserved by public programs and services.
  • Propose the inclusion of additional disability questions for the 2030 census, explain the rationale for additional questions and the overall set of disability questions to the public, and train census workers at all levels on the importance of the set and how to administer surveys that include the new set.

Contacting the Public

DREDF strongly advocates for the accurate population level identification of people with disabilities, as a whole and as discrete groups that experience health, education, employment, housing, transportation, and other disparities. However, we are also keenly aware that people with disabilities have experienced a very long history of discrimination because of their health status, or even just the perception of that status.[11] In the area of health insurance alone, disabled persons have been denied insurance outright, paid for insurance that by its very design failed to meet their coverage needs, and faced special caps and limitations in large swaths of medically necessary care such as mental health treatments and habilitation therapy. This history understandable raises distrust among many in the disability community when it comes to answering detailed questions about having a disability, and this may be especially true for persons with “invisible” disabilities such as psychiatric disabilities or chronic conditions that don’t have obvious physical manifestations.

Providing clear explanations of why disability questions are being asked, in plain language (i.e., 8th grade or lower) and in other languages including sign language, is one key threshold way to dispel distrust. Other recommendations are to:

  • Use trusted community messengers such as Independent Living Centers, disability advocacy organizations, and organizations such as the Special Olympics, and locally-based aging resource centers to disseminate explanations for why disability questions are being asked.
  • Gather a diverse range of people with disabilities to test their responses and thoughts on any drafted explanation of the need to ask disability questions.
  • Ensure that census data and sources of census data are protected with appropriate restrictions on how data is used, shared, transferred, and de-identified. Stored census data must be stored to the full extent of technical feasibility, including any 3rd party data sources used by the Census Bureau.
  • Every mailed or outreach document to the public should include information for how the information can be received in an accessible format such as large font or Braille. The options available should include sign language, recorded in a video format. Whatever the number of times determined as optimal for contacting any given household, the number of times should start with the provision of the requested accessible format.

New Data Sources

The addition of disability elements to the interoperability standards imposed on Electronic Health Records means that, eventually, disability information will become available in that forum, ideally through self-identified voluntary provided demographic information. It is possible that this information could serve as a third-party source for census information, more as a possible means of contemporary information verification rather than a primary information source. The Census Bureau would need to keep in mind the differences between the information collected in an EHR, which is needed partly to determine an individual patient’s reasonable accommodation needs for equally effective healthcare,[12] and the questions asked in a census survey, which is ultimately intended to provide aggregated population level data, Nonetheless, once functional status information on disability is firmly rooted as an interoperability requirement for EHR records, cross analysis of the data obtained from each source could potentially be obtained for smaller geographic areas, providing a “snapshot” of where and how people with disabilities are, or are not, gaining access to health care for that area.

Support for LGBTQI+ Inclusion within the 2030 Census

DREDF supports the development, appropriate testing, and full inclusion of LGBTQI+ census questions in the 2030 census. LGBTQI+ persons are subject to barriers and discrimination that elevate their need for targeted programs and resources and raise the need for population-level identification of this frequently underserved group. Moreover, some studies raise interesting questions that require further investigation into how LGBTQI+ status interacts with disability. Research on how patients and colleagues alike mistreat physicians who are disabled found that “Physicians with disabilities in our study were three times more likely than nondisabled physicians to receive negative remarks about their race or ethnicity and five times more likely to receive negative remarks about their sexual orientation. These findings suggest that there is unique and potentially exponential mistreatment occurring at these intersections, and they warrant further research.”[13] The question of whether these kinds of specific compounded disparities also occur at a population level first requires individuals in each group to be accurately identified in the census. DREDF recommends that the Census Bureau:

  • Reach and motivate all stakeholders to ensure LGBTQI+ people are counted accurately by engaging in research and testing to propose measures on sexual orientation, gender identity, and variations in sex characteristics (SOGI-SC) for the 2030 Census.
  • Help the public to understand the need to include LGBTQI+ persons in the census by directly participating in educational outreach and community engagement to encourage responses by LGBTQI+ people, reduce distrust, and improve population coverage.

We further support the more detailed recommendations submitted to the Census Bureau by Movement Advancement Project and the Center for American Progress.

Thank you again for the opportunity to provide input into the 2030 Census process. Please do not hesitate to contact me at syee@dredf.org if you have any questions about the above.

Sincerely,

Silvia Yee
Senior Staff Attorney

[1] See Fredriksen-Goldsen KI, Kim HJ, Barkan SE, Disability Among Lesbian, Gay, and Bisexual Adults: Disparities in Prevalence and Risk, January 2022, Am J Public Health 102(1):e16-21; LGBT People with Disabilities Infographic (2019), Movement Advancement Project; Smith-Johnson, M., Transgender Adults Have Higher Rates of Disability Than Their Cisgender Counterparts, October 2022, Health Affairs 41:10, 1470-1476.

[2] Office of the Assistant Secretary for Planning and Evaluation, HHS Implementation Guidance on Data Collection Standards for Race, Ethnicity, Sex, Primary Language, and Disability Status, October 2011.

[3] Hall JP & Kurth NK, Ipsen C, Myers A, & Goddard, K, Comparing Measures Of Functional Difficulty With Self-Identified Disability: Implications For Health Policy, October 2022, Health Affairs 41:10, 1433-1441.

[4] Centers for Medicare and Medicaid, AI/AN Age and Disability (December 1, 2021): Native people overall are over 50% more likely to have a disability compared to the national average rate of disability and have some of the highest rates of chronic disease in the US, while those 55 years and over had higher a prevalence of functional limitation, mobility disabilities, and self-care disabilities than white persons.

[5] 77th Oregon Legislative Assembly, 2013 Regular Session (HB 2134).

[6] Data Justice Act, 2021 Regular Session, chapter 549 (HB 3159).

[7] Oregon Health Authority, Chapter 943, Division 70, Division 70, Race, Ethnicity, Language and Disability Demographic Data Collection Standards.

[8] Washington State, 67th Legislature, 2021 Regular Session, Chapter 162 (HB 1272)

[9] Ashlen Strong, Beginning January 1, 2023 – New Rules for Hospital Patient Discharge Information Reporting (2021 Session E2SHB 1272), August 23, 2022, Washington State Hospital Association.

[10] This is the position advanced by advocates who presented before the Interoperability Standards Work Group when advocating for the addition of disability demographic data on functional limitation to be included in the U.S. Core Data for Interoperability v. 3. See Morris MA, Swenor BK, and Yee S, Closing Disability Disparities: EHR Data as First Step, March 1, 2022.

[11] Testimony of Sara Rosenbaum, George Washington University School of Public Health and Health Services, before the U.S. Senate, Committee on Finance, Roundtable on Health Care Coverage, May 5, 2009.

[12] Morris MA, Yee S, Breslin ML, Savage M, & Swenor BK, Health Care Equity Requires Standardized Disability Data in the ERH, October 27, 2022, Health Affairs Forefront.

[13] Meeks LM, Conrad SS, Nouri SS, Moreland CJ, Hu X., & Dill MJ, Patient And Coworker Mistreatment of Physicians with Disabilities (2022), Health Affairs 41:10, 1396-1402.