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Race, Ethnicity, Language, Disability, Tribal Affiliation Data Standards Guide

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Race, Ethnicity, Language, Disability, and Tribal Affiliation Demographic Public Data Collection Recommended Standards Guide
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Introduction

This guide is for internal City staff use and its purpose is to provide the Office of Equity and Human Rights’ recommended standards for Race, Ethnicity, Language, Disability, and Tribal Affiliation demographics, including:

  • Recommended standards and categories
  • Wording of questions
  • Answer options
  • Requirements
  • Considerations
  • Guidance when collecting information from the public.

The following are recommended standards, not requirements.  The City of Portland is subject to various federal and state laws, most specifically, Civil Rights Title VI, which compels collection, analysis, and reporting of demographic data with regard to our public, decision-making, and administration of our public plans, policies, programs, services, activities, and impacts.   

Bureaus can and should collect other demographic data. Gender, age, household income, household size, housing status and type, residence location or zip code, sexual orientation, employment status, etc. are common demographic questions and collected data. For now, the Office of Equity is only providing recommended standards for Race and Ethnicity, Language, Disability, and Tribal Affiliation questions.  We may address other categories in future work; these standards require City-wide collaboration and development. 

Equity, Civil Rights, and Nondiscrimination

The City of Portland is committed to advancing equity, civil rights, racial justice, environmental justice, and equal opportunity, and to nondiscrimination in accordance with all applicable federal, state, and local laws, directives, and statutes. The simple yet powerful mandates of equity and access shape and drive all City programs and activities. The City ensures that no person, on the basis of race, color, national origin or disability, be excluded from participation in, denied benefits of, or be otherwise subjected to discrimination in any City program, service, administrative act, or activity as provided by Title VI of the Civil Rights Act of 1964 (“Title VI”), Title II of the Americans with Disabilities Act of 1990 (“Title II”), and all other related statutes and regulations.  The City is committed to incorporating equity, justice, and nondiscrimination principles into all public planning and decision-making processes and project development, and to promote these goals through outreach efforts. This means that, among other things, the City will promote equitable delivery of government benefits and opportunities, including advancing meaningful engagement with all communities, and ensuring full and equitable access to programs, activities, and services. In addition to our statutory obligations, equity—as a matter of principle—is essential in all our dealings with the public. The City simply cannot fulfill its mission without recognizing equity as a driving force.

The City is committed to providing meaningful access and reasonably provides: translation, interpretation, modifications, accommodations, alternative formats, auxiliary aids, and services. To request these services, contact 311 (503-823-4000), for Relay Service & TTY: 711


Purpose

Establish minimum, uniform standards for common and consistent categories and processes for public data collection in the City of Portland for: race and ethnicity, language, disability, and tribal affiliation.

Standardized demographic data collection methodology will allow the City, Bureau, community stakeholders, elected officials, and other decision makers to better recognize, address, target and eliminate inequities experienced by distinct racial, cultural, and linguistic communities, and by people with disabilities.

Based on local, state, and national best practices, these standards allow the City to meet federal reporting expectations and the need for robust, comprehensive data collection and analysis; compare the City’s progress with national and local trends; aid our ability to design effective, data-informed policies and services; improve quality service delivery; ensure equitable allocation of resources; and institutionalize practices that can help us achieve a range of our Equity, Justice, and Civil Rights goals.


Office of Equity Demographic Standards inclusion, application, and critical considerations

A. Inclusion of Data on Race, Ethnicity, Language, Disability, and Tribal Affiliation:

We strongly recommend, where feasible, safe, and appropriate, the inclusion of demographic questions when collecting data from the public. If you are collecting demographic data or asking any one of the demographic questions on race, ethnicity, language, disability, or tribal affiliation, include either the standardized set (minimum or comprehensive) of all four questions or the comprehensive standardized set of all four questions. If you will not be asking any demographic question then you do not need to ask about race, ethnicity, language, disability, or tribal affiliation.

B. Collecting, Analyzing, and Reporting Data on Race, Ethnicity, Language, Disability, and Tribal Affiliation:

Race, ethnicity, language, disability, or tribal data must be collected, analyzed, and reported in an objective, accurate, and useful manner. Both the collection and reporting of the data must be sensitive to constituent concerns about privacy and potential misuse or abuse. Those considerations must be weighed in advance to determine if/when to collect this demographics data in collection efforts, which standards to use (minimum or comprehensive), collection design, data security and storage measures, employing mitigations to protect privacy (aggregation pseudonymization, anonymization), and in all other areas of data analysis and data management. 

Only those demographic categories for race, ethnicity, language, disability, and tribal affiliation, with adequate sample sizes to provide statistically reliable data and meet confidentiality standards, should be reported. Information on the validity and reliability of the data should be included, whenever possible, to enable the readers to judge the credibility of the findings.  Oregon has strict and broad reaching Public Information Laws and provisions; these should be considered in public data collection efforts and data management. 

All collection efforts should align with methodological best practices, privacy policies, data justice, and other data management policies.  Please collaborate with data analysts, data governance staff, City attorneys, and responsible bureaus for questions and assistance regarding application, protocols, and strategies. [See also Survey Respondent Privacy] 

C. The standards include both minimum (condensed), comprehensive (expanded), and optional answer fields/subcategories:

The condensed fields are the minimum categories to include and will often be the preferred option; expanded fields may be used when additional granularity of race and ethnicity, language, and disability categories is desired.  We encourage and recommend bureaus consider looking at the most compete and detailed picture of communities. This means examining populations at the subcategory level where possible and necessary. Disparities exist within racial and ethnic categories and it is important to include, understand, and be transparent of the greater detail about the distribution of multiple responses and of subpopulations. To that end, please first consider the comprehensive fields but with due consideration to privacy, confidentiality vs anonymity, data need and purpose, reporting, and formatting. If these are of concern, consider the minimum standards. These categories align with national and local community best practice, the State of Oregon’s ORS 943-070 REALD standards, and can be aggregated or rolled up to the US Office of Management and Budget Standards (established by the 1997 Directive 15).

D. Data Standards Represent Minimums not Maximum: The data standards described herein represent minimum standards and are not intended to limit the collection of needed data.

Both the minimum, comprehensive, and option question and answers represent baseline standards and additional detail may be incorporated if additional information is desired. Bureaus desiring more specificity or additional data are permitted and encouraged to collect additional data as needed as long as: the minimum standard is included; in the case of race and ethnicity the data can be aggregated up to the minimum standard; methodological best practices are utilized; and collection adheres to privacy principles. With respect to tabulation, the procedures used by bureaus shall result in the production of as much detailed information as possible. However, bureaus shall not present data on detailed categories if doing so would compromise data quality or confidentiality standards.

E. Exceptions to use of these standards, or to the inclusion of data on about race, ethnicity, language, disability, or tribal affiliation for City or City sponsored public data collection activities are as follows:

  1. When a data collection activity of a bureau, or bureau funded program is directed to one or a limited number of categories of a specific demographic variable (e.g., women) only that specific demographic variable would be excluded, but other standards would still be required. For example, if a survey specifically focuses on those who primarily speak Spanish (at home) and Spanish is their preferred language, it may not be necessary to collect data on language spoken at home, but data collection for race and ethnicity, disability, and tribal affiliation is required.  Similarly, if a bureau partners with a Tribal Government for data collection from Tribal members, it may not be necessary to include American Indian/Alaska Native Tribal Affiliation. That said, identities are fluid and complex; and bureaus should consider and weigh benefits, check sovereignty agreements, etc. before excluding variables.
  1. When consultation with analysts, researchers, community members, tribal nations, or other data SMEs determine that the data or collection of data on categories for any particular demographic group- race, ethnicity, language, disability, tribal affiliation - compromises confidentiality, data stewardship, and privacy standards, are considered statistically unreliable, are considered inappropriate, significantly related to or linked with current or potential abuse/misuse (or risk of abuse significantly outweighs data use and need), etc., then such demographic groups data should not be collect or reported separately unless accompanied by the appropriate cautions and safeguards.
  1. Special exceptions may apply and should be considered on a case-by-case basis by appropriate representatives including Bureau Directors or their designees, data analysts and data governance representatives, City attorneys, researchers, tribal nations, community members, and other consultants.
  1. When necessary, the City, the bureaus and bureau contractors and subcontractors may adhere to alternative standards to comply with differing data collection and reporting requirements.

Survey Respondent Privacy

The City of Portland is responsible for honoring the pledges of confidentiality and protecting the privacy of the public we serve while collecting demographic data and conducting surveys necessary for improving our programs and services over the course of the data lifecycle and in data infrastructure, security, and statistical protocols.  Please remember, everything that information collected by the city to conduct of the public’s business is public records [ORS  192.311(5)(a)] and subject to public records request [ORS 314]. City bureaus will make the best effort to understand risks and impacts of collecting personal information.

The City of Portland collects personal information from the public so we can provide important services, particularly to populations who currently and historically have experienced institutional exclusion and systemic oppression. At times, the City is interested in surveying the public or specific constituents or groups to plan, implement, or improve City services, policies, or programs. Individually identifiable information about survey respondents, especially of systemically excluded and institutionally oppressed groups, must be protected to ensure data security and respondent privacy. Data are more secure and confidential when personal identifiers are anonymized, processes for data access are rigorous and transparent, and errors and breaches in protocol carry significant consequences. The data should not reveal personal identifiers of individuals without consent. The data may be publicly available and helpful for research, but with strict privacy of respondents maintained. These issues are especially important for communities threatened by civil rights, oversurveillance, and oversight abuses.

All City bureaus must adhere to the requirements of the Privacy Principles to guide their actions when collecting and using the public’s personal information. Data, Metadata and Information will be secured and protected throughout its life cycle (full lifecycle stewardship). That includes collection, storage, use, maintenance, management, control, processing, publication, transfer, retention and disposition.  These demographic fields collect personal and sensitive information; application of demographic standards, collection, use, etc. must adhere and align with Privacy and Information Principles and all related policies, practices, and procedures. These measures for data security and respondent privacy defend against growing threats in cybersecurity and data misuse. It is also important to communicate the efforts and gravity of these measures to build public confidence and trust in survey management to ensure high response rates.

Even if you do not collect names or addresses in your survey questions if a respondent provides their gender, race, age, zip code, housing type etc. it may be possible to still identify who the person is. For example, if there is only one apartment complex in a particular ZIP code and we know a person lives in that ZIP code and in an apartment, and if that apartment only has 10 units, one could determine with reasonable accuracy where that person lives, and if you also asked about commute information you might also know when they are regularly home or not. This presents issues around protecting individual's privacy that must be considered when creating a survey. The more demographic questions we ask, the higher the privacy risk.

The City of Portland is implementing its Privacy and Information Protection Principles to become better stewards of public data. Please visit the Smart City PDX Privacy hub to find information about the efforts, policies and tools being developed by Smart City PDX. A privacy assessment toolkit is in development to help staff better navigate these issues. Until the toolkit is ready, you can review this resource for a best practice checklist.


Collection and analysis guidance and critical considerations

A. Self-identification is the standard. A key principle underlying RELDTA is that of self-reporting. The City, bureaus, offices, staff, contractors or subrecipients should ask individuals to self-report and should not assume or judge ethnic and racial identity, preferred signed and spoken language, disability status, or American Indian/Alaska Native tribal affiliation. Since the RELDTA data standards reflect identities and preferences, self-reporting will also provide the most accurate information.

B. Individuals have the right, and shall be offered the option, of selecting or providing one or more (multiple) racial or ethnic, language, disability, and American Indian/Alaska Native tribal affiliation designations or responses.

C. Requests for demographic information shall be voluntary and an individual has a right to decline to answer any or all demographic questions. Do not override an individual’s right to refuse to report – any or all the questions. All declined to answer or missing demographic information will be identified and recorded in the data collection instrument for analysis.

D. Identities are fluid and personal. Prioritize respondents’ comfort. Providing an option to write in an identity not listed helps relieve pressure and helps the City track emergent populations.

E. We have provided both a minimum and comprehensive set of standards under each category except Tribal Affiliation. Bureaus should weigh privacy, needs, use, size, context, etc., to determine whether to use the minimum, comprehensive, or combination of standards. 

F. Requests for demographic information shall be distinct from questions related to program eligibility criteria and an individual’s decision not to answer questions related to demographic data shall not affect eligibility for public programs.

G. Review any additional reporting requirements from funders, agencies, etc.

H. Check with your information systems and staff to ensure the categories can be captured.

I. The Order of Your Questions. Please make sure to ask the standard demographics questions at the end of your survey. Bureaus should collect demographic information that is not identifiable. Do not attach a name, address, phone number, or email address to a demographic form. If attached to an application, separate out demographics from the application during the decision-making process. All demographic information needs to be anonymous, and if it is not anonymous, first connect with analysts, managers, data governance leads, and attorneys to discuss business case and strategies. 

Tribal Affiliation is not the same as Race and Ethnicity, however topics and identities overlap and there can be confusion. In order to take active steps to avoid confusion, do not list next to each other in your survey; we recommend asking the Race and Ethnicity question first and the Tribal Affiliation question last.

J. We recommend formatting questions so the respondent can easily see the question and all response choices at once (e.g. on the same page of a paper survey). This helps the respondent feel comfortable. It also supports data accuracy. This may also help reduce misclassification due to a person who does not see the best choice and chooses among only what they do see.

K. Meaningful Access and Meaningful Access Statement:  Any data collection efforts involving the public should include a Meaningful Access Statement Meaningful Access Statement [this should be included for the entire survey, not necessarily in an introduction to the demographics section]:

Example: The City of Portland ensures meaningful access to City programs, services, and activities to comply with Civil Rights Title VI and ADA Title II laws and reasonably provides: translation, interpretation, modifications, accommodations, alternative formats, auxiliary aids and services. To request these services, contact 503-XXX-XXXX, or 311 (503-823-4000), TTY via Relay Service: 711.

L. Optional questions are included depending on desired information, need, subjects, and style. When the question is left open ended rather than predefined, code to condensed or aggregated standards for analysis and reporting.

M. Analysis – Types of analysis and reporting using REALD, consideration of Alone; Alone or in combination; Alone or in any combination:  Please consider the variety of ways in which we can analyze and report information.  The Oregon Health Authority REALD Implementation Guide provides an overview of different types of analysis and reporting and associated risks.[1]  We also want to respect and consider  recommendations from community partners by using alone and in combination where possible (and while weighing risks). From Coalition of Communities of Color Leading with Race: Research Justice in Washington County:

Currently, official Census Bureau counts (including the Bureau’s American Community Survey) can be tallied for people who either mark one “race” box or people who multiply identify with more than one race. Figures for people who mark/choose only one racial identifier are reported under “alone” statistics, while people who choose more than one identifier are reported under “alone or in combination” figures. We use “alone or in combination with other races” rule to collect data about all communities of color. This means that biracial and multiracial people are counted as belonging to each community that they identify with. These biracial and multiracial people disappear when researchers and policy makers use our “alone” figures to define the size of our communities, and their experiences get obscured, rendered invisible, and denied.[2]

N. Comparison concerns: Understandably, by expanding and differing our standards, comparing data presents a challenge. People will select and report differently depending on the options provided. These practices are rooted in community and we feel present a more accurate and representative description of our population and therefore will yield better data and be of greater benefit to the City. Furthermore, the City does not engage that frequently in population level data collection efforts, and historically, the demographic options provided did not align with OMB standards. This does however put constraints around comparisons, the validity of comparisons, and raises issues of data quality and confidentiality (smaller populations). Please indicate this concerns/issues in your reporting and take appropriate steps. If there are reporting requirements where roll up is of concern, bureaus may use OMB standards.  

O. Disparity, Inequity, Inclusion, and Progress Methodology: Content for this section to be developed.  Until this is ready, you can visit the Oregon Health Authority REALD Implementation Guide for similar information. Please keep in mind this guide applies to health and social services agencies and guidance may not be applicable or appropriate for the City.


Inclusion of Voluntary and Disclosure Clauses

Before undertaking any public data collection efforts or developing bureau standards, check with the City Attorney’s Office regarding the inclusion of voluntary and/or disclosure clauses. The following are examples  - do not replicate without first checking with City Attorneys. 

Public Records Disclosure Clause Examples:

  • The information you are providing on this form is available to the public through a public records request. Please do not include confidential or sensitive information.
  • Information you provide to the City is a public record and may be subject to release under Oregon’s Public Records Law. This law classifies certain information as available to the public on request. See our privacy statement for more information.
  • I am submitting this information with the expectation that it will be kept in confidence, and that the City will only release the information if ordered to do so. __Yes __No
  • I understand that the City of Portland intends to keep this information confidential but may release the information if ordered to do so. __Yes __No
  • Application: The City of Portland intends to keep the information you provide on this application confidential, but may be required to share the information under public records law. Please indicate which response you find appropriate: (your answer will not disqualify you from the process):

___ My application was submitted with the understanding that the City of Portland would keep the information confidential and would only disclose the information if ordered to do so. I would not have submitted this application without the promise of confidentiality.

___ You may share my application; I am waiving confidentiality.

  • Voluntary Demographic Form Clause Example: Completion of this section is not required and is therefore completely voluntary. Portland is committed to diversity, equity, and inclusion and uses provided demographic information to help ensure that services reach a broad cross section of community. State and federal law prohibit use of this information to discriminate against you.

 I have read the above explanation of how voluntary demographic information will be used. I agree and consent to sharing my voluntary demographic information.

☐ Yes 

☐ No (if no, do not fill out questions)


Sharing Information with the Public

Include an introductory statement, or message to respondents, that includes the following information in addition to a disclosure clause:

  • Purpose of collecting demographics and/or in connection with our commitment to equity
    • We ask about race, ethnicity, language, disability, tribal affiliation, and gender [add in other categories asked] in order to ensure representation in the work we do, provide the best services and policies, and to reduce inequities and disparities.
    • Portland is committed to diversity, equity, and inclusion and uses provided demographic information to help ensure that services reach a broad cross section of community.
    • Portland is committed to equity, justice, and inclusion and uses provided demographic information in order to ensure representation in the work we do, provide the best services and policies, and to reduce inequities and disparities.
  • Nondiscrimination Statement (if the demographics are being part of any application, provision of services, or decision-making process).
    • State and federal law prohibit use of this information to discriminate against you.
  • Transparency
    • Provide a link where they can find out more information and/or the demographic definitions (definitions in glossary below).
  • Voluntary
    • If not included in a voluntary and disclosure clause above, please make sure to indicate that completion of demographics is completely voluntary and the respondent has the right to decline to answer any and all questions, as well as the right to of selecting or providing multiple designations or responses. 

Standards - Categories and Subcategories

Design standards are flexible (accommodations for space limitations, formatting, etc.).  While we’ve provided a question under each category, it is not required. You may also list the category and provide answer selections if necessary and after sharing information with the public. 

Again, both a minimum and comprehensive set of standards are provided under each category except for Tribal Affiliation. 

Bureaus should weigh privacy, needs, use, size, context, etc., to determine whether to use the minimum, comprehensive, or combination of standards. Bureaus also may collect additional levels of detail but should design collection strategies in a manner that aggregates back to these Demographic standards. 

Review any collection requirements from other agencies. Please consider concerns with aggregation and comparison. When necessary, the City, the bureaus and bureau contractors and subcontractors may adhere to alternative standards to comply with differing data collection and reporting requirements.

General FAQs: Content for this section to be developed (including rationale, intent or purpose, and specifics about category and subcategories). Until this is ready, you can visit the Oregon Health Authority REALD Implementation Guide for similar information on why this data collection matters, history of these standards, general FAQs, benefits and purpose.  


Race and Ethnicity

Race and Ethnicity [Minimum] 

Which of the following describes your racial or ethnic identity? Please select ALL that apply.

☐American Indian or Alaska Native

☐ Asian

☐ Black or African American

☐ Latinx or Hispanic

☐ Middle Eastern/North African

☐ Native Hawaiian or Pacific Islander

☐ White

☐ Not listed above, please describe (optional)_______________________________

Race and Ethnicity [Comprehensive]

Which of the following describes your racial or ethnic identity? Please select ALL that apply.

American Indian or Alaska Native

☐ American Indian

☐ Alaska Native

☐ Canadian Inuit, Metis or First Nation

☐ Indigenous Mexican, Central or South American

Asian

☐ East Indian

☐ Cambodian

☐ Chinese

☐ Communities of Myanmar

☐ Filipino/a

☐ Hmong

☐ Korean

☐ Japanese

☐ Laotian

☐ South Asian

☐ Vietnamese

☐ Other Asian

Black or African American

☐ African American or Black

☐ African (Black)

☐ Afro-Caribbean (Black)

☐ Other Black

Latinx or Hispanic

☐ Mexican

☐ Central American

☐ South American

☐ Other Latinx or Hispanic

Native Hawaiian or Pacific Islander

☐ Native Hawaiian

☐ Chamorro

☐ Marshallese

☐ Micronesian

☐ Samoan

☐ Tongan

☐ Other Pacific Islander

Middle Eastern/Northern African

☐ Middle Eastern

☐ Northern African

White

☐ Eastern European

☐ Western European

☐ Slavic

☐ Other White

☐ Not listed above, please describe ___________

Race and Ethnicity – Recommended formatting and optional considerations

  • You may provide a question or just use a category header. If you opt for the header, please use Race and Ethnicity or Race/Ethnicity
  • If you ask a question, we recommend:
    • Which of the following describes your racial or ethnic identity? 
      • Please select ALL that apply.
  • You may want to include the separate answer option “I prefer not to disclose” after the not listed selection.
  • Optional Open-ended Question: You may include an open-ended question first to solicit further detail and self-identification (in addition to the structured answer selections) or you may decide to ask an open-ended question to allow for unrestricted response. 
    • Please be aware this may be extremely taxing on the coding and analysis side. 
    • Please make sure all answers are coded in a way that aggregate to the above answer standards (categories).
    • [Open ended] How do you identify your race, ethnicity, tribal affiliation, or ancestry?

Race and Ethnicity FAQs: Content for this section to be developed (including rationale, intent or purpose, and specifics about category and subcategories)


Language

Language [Minimum]

Language(s) spoken or signed at home: ___________________

Language [Comprehensive]

Language(s) spoken or signed at home: ___________________

How well do you speak English?

☐ Very Well

☐ Well

☐ Not Well

☐ Not at All

☐ Don’t know/Unknown

☐ Don’t want to answer/Decline

Language Categories – Recommended formatting and optional considerations

  • Additional Optional Question (highly recommended):
    • Language preference:   Written: _________        Spoken or Signed: _____________
  • Recommended Order
    • Languages used at home
    • Language preference
    • Language proficiency
  • Formatting:
    • You can provide a list of answer options instead of leaving the answer open-ended.  Similar to Race and Ethnicity, having the languages being pre-formatted is extremely helpful for data analysis because it pre-organizes the data; however, open-ended options are preferred.  If you decide to provide language categories, at minimum include Portland’s language list, English, and American Sign Language.  You may want to consider including languages most frequently spoken in Portland or the Portland Metro Area.  Please talk with your outreach team and/or the City’s Language Access Analyst to determine appropriate, predefined answer categories.  If you list options, provide an “other” answer category with the space for the respondent to write in or provide their specific language. 

Example:

Language(s) spoken or signed at home: ___________________

☐ Spanish: Español

☐ Vietnamese: Tiếng Việt

☐ Chinese: 中文

☐ Russian: Русский

☐ Romanian: Română

☐ Ukrainian: Україньска

☐ Japanese: 日本語

☐ Somali: Soomaali

☐ Arabic: عربي

☐ Laotian: ລາວ

☐ English

☐ American Sign Language

☐ Not listed, please describe:__________________________

  • If directly and continuously engaging with the respondent, you should consider asking additional/optional question to ascertain meaningful and effective communication needs and preferences.

Language FAQs: Content for this section to be developed (including rationale, intent or purpose, and specifics about category and subcategories)


Disabilities

Disabilities [Minimum]

Do you identify with having or living with a disability?

☐ Yes

☐ No

☐ I prefer not to disclose

If yes, please describe the nature of your disability. Select ALL that apply:

☐ Mobility or other physical disabilities

☐ Visual

☐ Hearing

☐ Intellectual, Developmental, Cognitive

☐ Speech or Communication

☐ Mental Health

☐ Invisible

☐ Not listed above, please describe: ____________________________

☐ I prefer not to disclose

Disabilities [Comprehensive]

Do you find it challenging to access City events, programs or services because of lack of accessibility or a need for additional support?        

☐ Yes             

☐ No

☐ I prefer not to disclose

If yes, please describe the nature of your need for additional access. Select all that apply:

☐ Mobility or other physical (Do you have serious difficulty walking or climbing stairs?)

☐ Visual (Do you have serious difficulty seeing. Do you use a screen reader, large print etc.?)

☐ Hearing (Do you have difficulty hearing, use ASL, cart etc.?)

☐ Intellectual, Developmental, Cognitive (Do you have difficulty concentrating, remembering, understanding, or making decisions?)

☐ Speech or Communication (Using your usual language, do you have difficulty communicating)

☐ Mental Health (Do you have difficulty with mood, behavior or thinking even with medication)

☐ Invisible (Do you have a disability that is not readily apparent by your general appearance)

☐ I prefer not to disclose

☐ Not listed above, please describe (optional): ____________________________

Disabilities Categories – Recommended formatting and optional considerations

  • Data Security is paramount (especially if dealing with confidential data)
  • Direct individuals to definitions and additional descriptions if using the condensed fields
  • These are distinctly different from federal reporting!  While we’ve tried to align for general comparison, bureaus should check reporting requirements or comparative needs to decide if it is necessary to use federal and state standards.
  • While decline options are generally used on the backend, because of the sensitive nature of this information, it is preferential to include the do not wish to disclose option to participants.

Disabilities FAQs: Content for this section to be developed (including rationale, intent or purpose, and specifics about category and subcategories)


American Indian/Alaska Native Tribal Affiliation

Are you an enrolled member, and/or a descendant, of a Federal or State recognized American Indian Tribe or Alaskan Native Village/Corporation? Mark and describe all that applies.

☐ Enrolled Member. Tribal Affiliation(s): ­­­­­­­­­­­­­____________________________

☐ Descendant. Tribal Affiliation(s): ­­­­­­­­­­­­________________________________

Tribal Affiliation Category – Recommended formatting and key considerations

  • Key Consideration: This question relates to sovereignty and associated rights/benefits, not specifically race, ethnicity or ancestry. Don’t dilute the language.
  • Please consider open-ended question soliciting greater detail in Race/Ethnicity if you want to collect information on Tribal or Indigenous identity/ancestry
  • Formatting:
    • Separate the question from Race/Ethnicity by multiple categories 

American Indian/Alaska Native Tribal Affiliation FAQs: Content for this section to be developed (including rationale, intent or purpose, and specifics about category and subcategories)


Glossary

“American Indian or Alaska Native” means an individual having origins in any of the original peoples of North and South America (including Central America) and maintaining a tribal affiliation or community attachment.  This includes but is not limited to individuals defined under those with tribal affiliation.

 “American Indian/Alaska Native Tribal Affiliation” means an individual who is:

(a) a member (as defined by the Indian tribe or band) of an Indian tribe, village, or band, including those Indian tribe or bands terminated since 1940, and those recognized by the State in which the tribe or band reside; or

(b) a descendant in the first or second degree (parent or grandparent) as described in (a); or

(c) considered by the Secretary of the Interior to be an Indian for any purpose; or

(d) an Eskimo or Aleut or other Alaska Native.

“African” means an individual identifying with or descending from any of the racial groups of Africa whose national origin is from a country on the continent of Africa.

African American or Black” is a federal demographic category meaning an individual identifying with or descending from any of the black racial groups of Africa.

“Asian” is a federal demographic category meaning an individual identifying with or descending from any of the original peoples of East Asia, Southeast Asia, or South Asia including, for example, Cambodia, China, India, Japan, Korea, Malaysia, Pakistan, the Philippine Islands, Thailand, and Vietnam.

"Bureau” means any of the bureaus or offices of the City of Portland.

“City” means the City of Portland.

“Declined to answer” is a demographic designation used when the individual actively chooses not to provide information on their race or ethnicity, language, disability, or tribal affiliation.

Demographic data” means collected information related to age, gender, race, ethnicity, preferred spoken, signed and written language, disability status, and tribal affiliation. Demographic data under these rules will be collected for the purpose of better understanding populations who interact with, are served by, and are impacted by the City and its bureaus.

“Disability” or person with a disability, means an individual who identifies as

(a) having a condition that meets the criteria for establishing that an individual has a disability under ORS 659A.104; or

(b) as defined by Section 504 of the Rehabilitation Act; or

(c) as defined by the Americans with Disabilities Act of 1990 (ADA) as a person who has a physical or mental impairment that substantially limits one or more major life activities, a person who has a history or record of such an impairment, or a person who is perceived by others as having such an impairment. The ADA does not specifically name all of the impairments that are covered.

“Ethnicity” means a demographic designation for a group of people sharing a culture that includes race, religion, language, and other cultural characteristics including ancestry or country of origin.

“Hearing” means an individual who identifies as being deaf or hard of hearing. 

“Intellectual, Developmental, Cognitive” means an individual who identifies as living with a developmental, cognitive or intellectual disability.  This can include but is not limited to people who live with Autism, brain injury, Downs Syndrome, and dementia.

“Invisible” means an individual who identifies as living with disabilities that can limit their ability to perform one or more tasks of daily living but who are often overlooked in disability data collection because they may appear not to have a disability or their disability is not always actively limiting them.  People with hidden disabilities can include but are not limited to those with HIV, Cancer, Fibromyalgia, Diabetes, seizure disorder, and colitis.

“Latinx* or Hispanic” is a federal demographic category meaning an individual of Cuban, Mexican, Puerto Rican, Dominican, South or Central American, or other Spanish culture or origin, regardless of race.

*We use the term “Latinx” as a gender-neutral alternative to “Latino.” In Spanish, the masculine version of a noun is gender neutral, but some advocates, mostly based in the United States, have called into question the neutrality of masculine nouns. Language evolves and more inclusive alternatives to “Latino” have included Latina/o and Latin@. We use Latinx to intentionally include gender nonconforming and nonbinary people of Hispanic or Latin American origin who might not identify with the masculine or the feminine. Though a relatively new term believed to have originated in the Latino LGBTQ community, and not without dissent, Latinx is being increasingly adopted by advocates, universities, and even government agencies

 “Mental Health” means individual who identifies as living with a mental health disability that affects their mood, behavior, and thoughts. These affects may interfere with a person’s ability to make and maintain meaningful relationships; to care for themselves; and to carry out daily life functions (work, school, etc.).  This can include but is not limited to people who live with depression, PTSD, Schizophrenia, bi-polar disorder. 

Mobility or other physical disabilities” means individuals who identify with using mobility devices such as walkers, wheelchairs, scooters, crutches, canes as well as people who would require assistances entering or evacuating a building with stairs.  

 “Native Hawaiian or Other Pacific Islander” is a federal demographic category meaning an individual having origins in any of the original peoples of Hawaii, Guam, Samoa, or other Pacific Islands.

“Not listed/Other” means an individual identifies with a demographic designation not listed.

“Race” means a demographic designation for a group of people who share a common heredity.

(a) Race includes shared ancestry, national origin and sociocultural characteristics.

(b) Race is not a biological, anthropological or genetic distinction.

“Speech or Communication” means an individual who identifies with having speech or communication disabilities.  This can include difficulty with speech and verbalization or being understood

“Visual” means an individual who identifies as being blind or low vision. 

“White” is a federal demographic category meaning an individual having origins in any of the original peoples of Europe,

  1. Europe,
  2. the Middle East,
  3. or North Africa.
  4. It includes people who indicate their race as "White" or report entries such as Irish, German, Italian, Lebanese, Arab, Moroccan, or Caucasian…

Additional Resources

Contact bureau data analysts, data governance liaisons, IT analysts, City attorneys, and/or the Smart Cities Open Data Coordinator for additional information and guidance.


Disability Demographic Data Collection Guidance

The following guidance is intended to help your bureaus begin to collect useful disability data in a standardized way across the City.  Historically disability data has been limited.  The Census Bureau only collects data on disability through the American Community Survey (ACS) beginning in 1999 and the Survey of Income and Program Participation (SIPP) starting in 2014.  The current data available around disability statistics is further compromised by the social stigma’s associated with identifying as a person with a disability.  Older Americans, for example who are 35% more likely to experience a disability over the age of 65…rarely identify themselves has having a disability.

The questions we want bureaus to use for the City are based on these federal surveys, as well as Multnomah counties and the Washington Group on Disability Statistics. Our questionnaire varies from these because:

  • We want to be inclusive of more identity within disability.  While many people are reluctant to identify as having a disability, others are very aware and embrace their identity and we wanted to respect identity language.
  • We want to collect data that would be useful to the City in practical ways for resource allocation and accommodation.  For example, if we know we have a high concentration of people who identify as being Deaf or hard of hearing in North Portland we can make sure a City event, like a budget forum in that area, will have sign language and CART at the event without the need to request it ahead of time.  We have heard time and again from the community of people with disabilities that they often do not attend City events because it requires more work on their part to be accommodated when able body people can just show up. Purpose of collecting demographics and commitment to equity.
  • We want to collect data that could help us in planning and decision making.  If we have good data around types of disability crossed with geography it would help many bureaus such as Parks, Housing, PBEM and PBOT prioritize locations for elements like accessible housing and shelters, curb cuts and playground features.

We attempted to combine descriptors from the population data questions with our identity-based choices, to reduce non-identification by providing action based questions and, so if bureaus wanted they could still disaggregate City data with some of the population data.

Current Recommended Template:

Government programs, services, and events sometimes have barriers that prevent people with all kinds of bodies/minds from being part of what we offer. We want to understand and eliminate these barriers. We’re asking these questions so we can plan easier-to-access programs, services, and events.”

Additional Definition Information:

Here we are defining our terms and how they correlate to the ACS.

Do you identify with having or living with a disability? is a catch all of disability identity. This can be very helpful in assessing where the data you collected is close to the percentage of people living in Portland with disabilities. Based on data from Multnomah Count we know roughly 17-22% identify as having some kind of disability. If, for example, your survey results show 17-22% of the respondents answered yes to the first question you know you have done a good job outreaching the general population of people with disabilities.

The first question correlates to ACS Disability Status defined by the ACS as: The U.S. Census Bureau used six questions to identify people with disabilities. A response of "yes" to any one of the questions indicates that the person in question has a disability-vision, hearing, cognitive, ambulatory, self-care, and independent living. However, the questions related to cognitive, ambulatory, self-care, and independent living are not used to identify disability in individuals less than five years old, and the question related to independent living is not used to identify disability in individuals less than 18 years old.

Mobility or other physical disabilities is collecting data about people who use mobility devices such as walkers, wheelchairs, scooters, crutches, canes as well as people who would require assistances entering or evacuating a building with stairs.

This question correlates to what the ACS defines as an Ambulatory Disability: In the ACS, individuals five or more years old who responded "yes" when asked if they had "serious difficulty walking or climbing stairs."

Visual is collecting data about people who identify as being blind or low vision.  We emphasized assistive technology in this question as this is important information when creating outreach material and designing websites.

This question correlates to what the ACS defines as Vision Disability: In the ACS, individuals who indicated "yes" when asked if they were "blind or ... [had] serious difficulty seeing even when wearing glasses."

Hearing is collecting data about people who identify as being Blind or hard of hearing.  We emphasized interpretation and assistive technology as this important information for bureaus who need to be able to accommodate requests for not only ASL interpreters and cart, but also sign language in other languages and assistive listening devices for people who use hearing aids.

This question correlates to what the ACS defines as Hearing Disability: In the ACS, individuals who indicated "yes" when asked if they were "deaf or ... [had] serious difficulty hearing."

Intellectual, Developmental, Cognitive is collecting data about people who identify as living with a developmental, cognitive or intellectual disability.  This can include but is not limited to people who live with Autism, brain injury, Downs Syndrome, and dementia.

This question correlates to what the ACS defines as Cognitive Disability: In the ACS, indi­viduals who indicated "yes" when asked if due to a physical, mental, or emotional condition, they had "serious difficulty concentrating, remember­ing, or making decisions."

Speech or Communication is collecting data about people who identify having speech or communication disabilities. This can include difficulty with speech and verbalization or being understood. People with speech and communication disabilities can often have an easier time with pictograms and or texting options, or may benefit from amplification devices.

The ACS does not collect data related to Speech or communication disabilities.

Mental Health is collecting data about people who identify as living with a mental health disability. This can include but is not limited to people who live with depression, PTSD, Schizophrenia, bi-polar disorder.  That affects their mood, behavior, and thoughts. These affects may interfere with a person’s ability to make and maintain meaningful relationships; to care for themselves; and to carry out daily life functions (work, school, etc.). This information can be helpful to bureaus around delivering services using trauma informed practice and/or training staff in things like mental health first aid.

Invisible is capturing people who live with disabilities that can limit their ability to perform one or more task of daily living but who are often overlooked in disability data collection because they may appear not to have a disability or their disability is not always actively limiting them.  People with hidden disabilities can include but are not limited to HIV, Cancer, Fibromyalgia, Diabetes, seizure disorder and  colitis. We felt it was important to capture people in this group though the data may not readily be useful without a deeper disaggregation. 

Do not wish to disclose and Other: Unlike population data around disability we felt it was important to give people the option of opting out of further identifying their disability as well as the option of self-identifying something that was not captured by our identifiers.

Note:

We chose not to capture two categories of the ACS data set. We felt these questions were much more useful for organizations that provide social services to people with disabilities.  If your bureau would like to utilize these ACS questions you may along with the questions we put forward for the standards but be sure to consider what the data will inform before doing so.

Independent Living Disability (ACS): In the ACS, individuals who indicated "yes" when asked if due to a physical, mental, or emotional condition, they had difficulty "doing errands alone such as visiting a doctor's office or shopping."

Go-Outside-Home Disability (ACS): An individual with difficulty going outside the home alone to shop or visit a doctor's office because of a physical, mental, or emotional condition lasting at least six months.

Resources:

The following websites may be helpful if you want to do a deeper dive into disability data:


Aggregation Crosswalk and Mapping Race and Ethnicity to other data collection standards

Please see the Aggregation/Rollup and Comparison Crosswalk:

Office of Management and Budget (OMB) establishes federal standards for race and ethnicity. Data reported to other agencies, such as the federal government, may need to be rolled-up into the OMB standards for race and ethnicity.

There are multiple rollup schemes for aggregating granular data with OMB standards.  Please look at methodology and coding reports from the Census Bureau, the ASC and PUMS, or consider using the CDC/HL7 code set.  There are over 900 race and ethnicity codes in the CDC/HL7 Code Set introduced in 2000.

For more information visit:


Acknowledgements

The content of this guidance was inspired by and borrowed from great work happening around the country and region. Thank you for lending your expertise to these important efforts, including:

  • Oregon Health Authority Office of Equity and Inclusion
  • Multnomah County Public Health Department
  • Coalition of Communities of Color
  • City of Portland Office of Equity and Human Rights
  • City of Portland Office of Government Relations
  • Open Data and Data Governance Work Groups
  • City of Portland Bureau of Transportation
  • City of Portland Bureau of Planning and Sustainability
  • City of Portland Office of Community and Civic Life
  • City of Portland Bureau of Human Resources
  • Center for Disease Control
  • Department of Health and Human Services
  • Department of Housing and Urban Development
  • Multnomah County Office of Diversity and Equity
  • PolicyLink

[1] See “Race and ethic specific analyses – some considerations starting on page 90 of Oregon Health Authority Implementation Guide. McGee, M.G. (2020). Race, ethnicity, language and disability (REALD) implementation guide. Portland, Oregon: Oregon Health Authority, Equity and Inclusion Division.

[2] Coalition of Communities of Color (2018). Leading with Race: Research Justice in Washington County. Portland, Oregon: Coalition of Communities of Color.