April 27, 2023
Submitted via email to www.regulations.gov
The Honorable Richard L. Revesz
Administrator
Office of Information and Regulatory Affairs
Office of Management and Budget
1800 G Street, NW, 9th Floor
Washington, DC 20503
RE: Initial Proposals for Updating OMB’s Race and Ethnicity Statistical Standards (OMB-2023-0001)
On behalf of Disability Rights Education and Defense Fund (DREDF), I am writing to support OMB’s initial proposal to update Statistical Policy Directive 15 (SPD 15) on Race and Ethnicity Statistical Standards. 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. We are committed to increasing accessible and equally effective healthcare for people with disabilities and eliminating persistent health disparities that affect the length and quality of their lives. DREDF appreciates the opportunity to support and comment on the OMB’s updating proposal.
Our primary reason for submitting comments is rooted in our understanding that people with disabilities are a widely heterogeneous sub-population as disability and chronic health conditions occur across all races and ethnicities. Moreover, people at the intersection of non-white race/ethnicity and disability can face compounded barriers to a wide variety of services and programs, ranging from health care[1] to education[2] to economic/social assistance.[3] We strongly advocate for the accurate, full, and inclusive capture of people of all races and ethnicities living in the U.S. To that end, we have signed onto a letter submitted by the National Health Law Project (NHeLP) on behalf of itself and other organizations, and a letter submitted by the Leadership Conference on Civil and Human Rights (LCCHR) on behalf of itself and others.
We strongly support the recommendations made in those two letters and particularly endorse the need for both mandatory adherence by states and local entities to OMB SPD 15 once the latest revisions are finalized, and substantial, tailored technical assistance and education that will help states and local entities implement the new race and ethnicity standards across their programs and activities.
As a disability rights organization, DREDF has not had extensive interactions with OMB on its statistical policy directives since there does not appear to be a SPD that establishes minimum standards for the collection of demographic information on disability status. It was helpful, therefore, to see OMB’s characterization of itself as “coordinator of the Federal statistical system under the Paperwork Reduction Act,” responsible for ensuring “the efficiency and effectiveness of the system as well as the integrity, objectivity, impartiality, utility, and confidentiality of information collected for statistical purposes.” This helped illuminate for us the coordinating and leadership role that OMB assumes over the gathering and use of statistical information in the country.
In our own work on health equity over the past several years, we have been sharply aware of how statistical data and research falls short for groups that exist at the edges of current data requirements, such as Native Indians below 65 years of age who have disabilities, or Middle East and North African (MENA) teen-agers with autism or mental health disabilities. DREDF has been told repeatedly that more granular race/equity categories in combination with other characteristics such as disability or age results in statistical analysis that cannot be validated due to small sample sizes. The pooling of greater numbers of sample sizes across states and over several years is made possible when states adhere to common standards and methods for obtaining race/ethnicity and other data. The proposed revisions to SPD 15 are critical for at least establishing the existence of disparities linked to granular categories of race/ethnicity and disability in such key areas as healthcare, housing, education, and employment. Once those disparities are established, research and funding directed toward reducing those disparities can appropriately follow.
DREDF’s second reason for writing a comment on the proposed revisions to SPD 15 is to emphasize the importance of monitoring and guiding how data collection and use can maintain its integrity and analytic continuity before and after proposed revisions are adopted. We and many other consumer advocacy organizations support the process of revisions because research establishes how many people of different races and ethnicities are confused by the current two-question separation of race and ethnicity, and do not continue on to answer more precise granular questions about race, or make misleading or overbroad choices because their own racial/ethnic identity is not reflected in the current categories. Making a change is worth it to achieve more accurate capture of the range of racial and ethnic groups that now live in the U.S. and allows us to gain useable information instead of a large category of respondents who merely chose “other” because they do not see their own race/ethnicity reflected in the questions they are told to answer.
The disability community faces many of these same issues if the current questions commonly used to identify people with disabilities and identified in the Affordable Care Act were to be revised.[4] Well before the Affordable Care Act we passed, the Census Bureau developed and validated a set of six disability questions that asks individuals to identify their experience of specified functional impairments. The questions are used in the American Community Survey (ACS) and a number of other federal surveys and data collection systems and must be used as a set.[5] But there are some strong reasons to seek a revision. Over the years, a number of specific groups of people with disabilities have expressed concern that the 6 questions fail to accurately capture their experiences of disabilities and forces them to over or under-identify themselves by fitting within categories that do not apply to them or failing to identify as a person with a disability altogether. For example, people with communication disabilities have functional impairments that affect their ability to be understood using their usual mode of language or expression, but they do not necessarily have any trouble with hearing or cognition; there is no question in the set of ACS 6 disability questions that applies to them. Other people with autism or people with episodic disabilities such as mental health disabilities, and people with multiple disabilities can also find themselves in the dilemma of choosing a response that simply does not fit. As a result, the existing set of six questions, as well as the Washington Group “Short Set” of disability questions which was developed and tested internationally, fails to achieve needed accuracy of information.[6] The analysis based on that information therefore does not the needs of all segments of the disability community or of those experiencing intersectional discrimination and compounded barriers.
OMB’s monitoring of bridging from the existing race/ethnicity standards to the revised ones when they are eventually adopted, and the agency’s development of guidance, best practices, and identification of preparation by federal agencies, states, and local entities that can be made before and after the revision is instituted will be invaluable for the disability community when it reaches the point of considering revisions to the ACS 6 questions.
As with race and ethnicity, the people who are being asked to provide data and honestly provide information about themselves and their experiences should be centered in any and all revisions to data collection surveys. Thank you again for the opportunity to comment on OMB’s proposed revisions. DREDF is confident that the revision will achieve the aim of improved inclusion and recognition of America’s diversity. For these and the forgoing reasons, we support the changes proposed by OMB and urge you to quickly finalize this revision to SPD 15. Please feel free to contact me with any questions on the above.
Sincerely,
Silvia Yee
Senior Staff Attorney
[1] Silvia Yee et al., Compounded Disparities: Health Equity at the Intersection of Disability, Race, and Ethnicity, Nat’l Acads. Sci. Eng’g. & Med. 43–44 (2017), available at https://www.nationalacademies.org/our-work/the-intersections-between-health-disparities-disabilities-and-health-equity-a-workshop
[2] DREDF, School-to-Prison Pipeline at https://dredf.org/legal-advocacy/school-to-prison-pipeline/.
[3] M. Maroto, D. Pettinicchio, & A. C. Patterson, Hierarchies of Categorical Disadvantage: Economic Insecurity at the Intersection of Disability, Gender, and Race (2019), Gender & Society, 33(1), 64–93. https://doi.org/10.1177/0891243218794648.
[4] Patient Protection and Affordable Care Act, 42 U.S.C. § 4302.
[5] U.S. Department of Health and Human Services, Office of Minority Health, Explanation of Data Standards for Race, Ethnicity, Sex, Primary Language, and Disability at https://minorityhealth.hhs.gov/omh/browse.aspx?lvl=3&lvlid=54.
[6] Jean P. Hall, Noelle K. Kurth, Catherine Ipsen, Andrew Myers, & Kelsey Goddard, Comparing Measures Of Functional Difficulty With Self-Identified Disability: Implications For Health Policy, Health Affairs 2022 41:10, 1433-1441, at https://www.healthaffairs.org/action/showCitFormats?doi=10.1377%2Fhlthaff.2022.00395.