OAR 950-030-0020: Demographic Data Collection Standards

(1) To the greatest extent practicable, all programs and activities of the Oregon Health Authority (OHA), including activities to promote workforce diversity, and any data collection or reporting OHA does on behalf of other state agencies, through any means, must collect REALD and SOGI information in accordance with these rules and OHA policy. (2) To the greatest extent practicable, OHA must require contractors and subcontractors, who collect, record or report any demographic data on behalf of OHA to collect REALD and SOGI information in accordance with these rules and OHA policy. (3) A requestor, when collecting REALD and SOGI information in accordance with these rules, must comply with the following standards: (a) Individuals must be asked to self-report answers to the questions and information must not be assumed or prejudged. (b) If an individual is unable to self-report, a family member, advocate, or authorized representative may answer the questions. (c) A requester may not fill in demographic information for an individual if an answer is missing or has otherwise not been provided by the individual or the individual’s caregiver, except as permitted in section (7) of this rule. (d) Questions must be asked in the exact way they are worded in these rules, except that pronouns can be changed or substituted with proper nouns. For example, the question "How do you identify your race, ethnicity, tribal affiliation, country of origin, or ancestry?" could be changed to "How does your child identify their race, ethnicity, tribal affiliation, country of origin, or ancestry?". The question about hearing loss, "Are you deaf or have serious difficulty hearing?" can be changed to "Is your child deaf or do they have serious difficulty hearing?". (4) A requestor or individual must identify who is answering the REALD and SOGI questions. Response options: (a) Self. (b) Parent, guardian or other family member. (c) Interpreter or other support person. (d) Not listed, specify: (with open text box). (5) If a requestor is directly asking an individual who is answering the REALD and SOGI questions as required in section (4) of this rule, the requestor must explain that more than one response may be chosen. (6) For all REALD and SOGI questions, except for open-ended text questions, a requestor must offer the following response options in addition to any other responses required in these rules: (a) "Don’t want to answer". This response should be used by an individual or the individual’s caregiver when the individual or caregiver is choosing not to answer the question. (b) "Don’t know". This response should be used by an individual or an individual’s caregiver when the individual or caregiver does not know the answer to the question. (c) For the response options for the disability questions specified in OAR 950-030-0050(2)(e) and (3)(b) and the SOGI questions specified in OAR 950-030-0060(3), (6) and (9), "Don’t know what this question is asking". This response should be used by an individual or an individual’s caregiver when the individual or caregiver does not understand what the question is asking. (7) When the race, ethnicity, signed, written or spoken language, disability, sex, sexual orientation or gender identity of an individual is required by federal law and an individual is unable or unwilling to self-report, this information must be recorded by the requestor as "staff determined" information. (8) When reporting REALD and SOGI responses, a requestor must: (a) Mark a response as "not applicable" or leave blank if a question was allowed to be skipped under the rules. (b) Mark a response as "did not answer" or "missing" or leave blank if the question was applicable but was not answered with any response. (9) Requests for demographic information must be distinct from questions related to program eligibility criteria and an individual's decision not to answer questions related to demographic data must not affect eligibility or inclusion in any related program or benefit. (10) Nothing in these rules prohibits the collection of information for purposes of establishing eligibility for a specific program or service. (11) The date for when the REALD and SOGI data was collected must be captured and included in the dataset holding the data. (12) A requestor must collect the individual’s date of birth and use the MM/DD/YYYY date format. (13) Every time data is collected an individual must be asked REALD and SOGI questions unless they have been asked by the requestor within the previous 12 months. If the response to any REALD and SOGI question is marked as "missing" or "did not answer", the requestor must attempt to collect the missing information even if the REALD and SOGI questions were asked by the requestor within the last 12 months. If a response is marked as "don’t want to answer" or "not applicable", a requestor does not need to attempt to collect missing information more than once every 12 months. (14) Requestors using online platforms to collect REALD and SOGI information described in this rule may not use "other" as a response option unless otherwise permitted by these rules. (15) Methods used to collect information in accordance with these rules: (a) Must comply with: (A) The Americans with Disabilities Act (ADA). (B) Title VI of the Civil Rights Act of 1964 to the extent that an individual may have a right to the translation of materials or interpreter services in order to be able to answer the questions. (C) OHA policies related to the ADA, language access requirements, or the advancement of health equity. (b) Must account for the need to gather data from individuals with disabilities, individuals who prefer a language other than English, and individuals with other access barriers. (c) Must not exclude individuals from data collection efforts even if the method for collection has to be changed to accommodate the needs of particular individuals. (16) If providing written materials, the requestor must ask if there is a need for written materials in an alternate format, including but not limited to another language, braille, large print, or audio.