Race, Ethnicity, Language, & Disability (REALD) Implementation Guide Acknowledgments We acknowledge the time, dedication and effort shown by members of the REALD Policy Committee who met in 2016-2017 and worked to draft the REALD Implementation Policy. Also, we want to acknowledge the nearly 100 community members who participated in community engagement sessions in 2017. We also thank the staff from across Oregon Health Authority for their questions and ongoing work that led to the development of the implementation guide. For more information: Contact Marjorie McGee at [email protected] or 971- 673 -3390. Suggested citation: McGee, M.G. (2020). Race, ethnicity, language and disability (REALD) implementation guide. Portland, Oregon: Oregon Health Authority, Equity and Inclusion Division. This document can be provided upon request in an alternate format for individuals with disabilities or in a language other than English for people with limited English skills. To request this publication in another format or language, contact the Office of Equity & Inclusion at 971-673-3390 (voice or VRS), or email Marjorie McGee, Ph.D. at [email protected]. 2 Race, Ethnicity, Language, and Disability (REALD) Implementation Guide Contents » Acknowledgments ...........................................................................2 » Contents ...........................................................................................3 » Introduction ......................................................................................6 » Overview of the guide ..................................................................6 » 1. REALD and what it means for Oregon ..........................................9 » Why race, ethnicity, language, and disability (REALD) demographic data collection matters .................................................9 » What is REALD? ........................................................................ 11 » Applicability: Who needs to collect REALD data? ........................ 15 » History: How was REALD developed? ......................................... 16 » Benefits of using REALD data ..................................................... 17 » 2. Understanding REALD categories and questions ....................... 19 » Key REALD elements ................................................................. 19 » General REALD FAQs ................................................................. 21 » Racial and ethnic identity ..........................................................23 » Language and communication ....................................................33 » Disability ....................................................................................36 » 3. REALD implementation policy and work plans ..........................45 » Work plan frequently asked questions ........................................65 » Frequently ask questions – data exemptions and extensions .......65 » 4. Data collection ..........................................................................68 » What to collect ...........................................................................68 » Language questions ...................................................................69 » REALD data collection templates and checklists .........................69 Primary racial or ethnic identity question .................................... 70 » Race, Ethnicity, Language, and Disability (REALD) Implementation Guide 3 » Clarification for select racial or ethnic identities .......................... 71 » Response matrix – asking the race or ethnicity question ............. 72 » Disability questions – when to probe .......................................... 73 » Design of data collection tools .................................................... 73 » Data systems (tools) ................................................................... 81 » 5. Data quality, analyses and reporting .........................................84 » Using REALD to improve data quality ..........................................84 » Intermediate aggregation ........................................................... 87 » Race and ethnic specific analyses – some considerations ...........90 » Types of analyses and reporting using REALD ............................90 » Considerations of disability specific analyses .............................. 97 » 6. REALD data collection resources ............................................ 107 » REALD paper-based survey templates ..................................... 107 » IDEAS decision aid ................................................................... 107 » Other resources for data collection ........................................... 108 » 7. REALD and community engagement ........................................ 109 » Community engagement and the IDEAS decision aid to guide community engagement.............................................. 109 » Sharing data ............................................................................110 » 8. Community engagement resources ..........................................113 » Resources for engaging with communities equitably ..................113 » 9. References for researchers .......................................................115 » Documented health inequities (and collecting data to address inequities) ...............................................................115 Intersectionality – theory, methods and use in » health research .........................................................................119 4 Race, Ethnicity, Language, and Disability (REALD) Implementation Guide » Strategies associated with small sample sizes ......................... 121 » References .............................................................................. 123 » Appendix A. Reliability and validity of the ACS disability questions ...................................................................... 134 Glossary of terms and acronyms ................................................. 142 » Race, Ethnicity, Language, and Disability (REALD) Implementation Guide 5 Introduction The purpose of this guide is to provide in-depth information to facilitate implementation of the Race, Ethnicity, Language, and Disability (REALD) demographic data collection standards. This guide also includes information to support analysis and reporting of REALD data. Overview of the guide Below is a brief overview of each section of this guide. Many sections includes links to additional resources. A glossary of terms and acronyms used in this guide follow. 1. REALD and what it means for Oregon: This section covers: • Why REALD matters, what it is, and the purpose of REALD • Who REALD applies to, and • A history of how and why REALD was developed. This section explains the benefits of increased details in the standards. This section also provides an overview of foundational concepts underlying the REALD standards. This includes: • Health equity • Inequities, inequities, and • Social determinants of equity and health. 2. Understanding the REALD categories and questions: This section begins with an overview of REALD categories and questions. There are detailed FAQs for: • Race and ethnicity • Language, and • Disability. This section also provides indepth examples of subgroup differences by racial and ethnic identity categories. 6 Race, Ethnicity, Language, and Disability (REALD) Implementation Guide 3. REALD Implementation Policy and work plan: This section reviews key REALD Implementation Policy and work plan requirements. It describes how older datasets are being brought into compliance, following prioritization. There is a work plan template, checklist for data collection tools, and a flowchart of the implementation process. There is an explanation of the analyses and reporting requirements of the REALD Implementation Policy. 4. Data collection: This section includes key points and concepts about • REALD data collection • Accessibility requirements • Guidelines for designing and formatting questions, as well as information on messaging, and how to “ask the questions,” and, • Ways to collect, map and store REALD data. Additional information on training needs, as well as other resources and tools to aid in data collection are also provided. 5. Data quality, analyses and reporting: Suggestions for data quality checks are in this section. There are also guidelines for analyses and reporting such as: • Intermediate aggregation • Addressing challenges associated with small samples (or subgroups) • Reporting alone or in combination, and alone or in any combination • Using the primary race category and imputation when needed • Estimating granular racial and ethnic denominators using American Community Survey Public Use Microdata Sample (PUMS) • Considerations for disability-specific analyses, and • Intersectionality using REALD as an analytic tool. 6. Data collection resources: This section includes information and links to: • REALD templates • IDEAS decision tool, and • Other internal resources. Race, Ethnicity, Language, and Disability (REALD) Implementation Guide 7 7. REALD and communities (community engagement): The goal of REALD data is to identify and address health inequities. This section includes: • Guidelines for representing diverse populations during data collection • Responding to data requests from community organizations • Distributing data for communities to use, and • Engaging communities when conducting research. 8. Community engagement resources: