NEW November 2023: See the new Quarterly Update below.
About the project
I/DD Counts is a cross-agency initiative to:
- Establish and maintain accurate data on the prevalence of intellectual and developmental disabilities (I/DD) in the United States and its territories, and;
- Improve the collection, analysis and interpretation of the health-related data of people with I/DD.
The goal of the initiative is to increase our collective understanding about factors that affect the health and well-being of people with I/DD, which will in turn support development of effective policies and programs to support them and their families.
ACL is leading the I/DD Counts initiative in partnership with self-advocates, advocacy organizations, researchers, and the following U.S. Department of Health and Human Services partner agencies:
- Assistant Secretary for Planning and Evaluation (ASPE)
- Centers for Disease Control and Prevention (CDC)
- Centers for Medicare & Medicaid Services (CMS)
- National Institutes of Health (NIH)
Partners are currently working with stakeholders developing a 10-year plan to guide the development of the health surveillance system for people with I/DD.
Why this is important
Although public health surveillance of people with disabilities has improved, the lack of data on the health of people with I/DD persists. Health surveys often exclude I/DD altogether, and when information about people with I/DD is collected, it often lacks demographic data, such as age, sex, ethnicity and race. In addition, the way data is collected varies widely between states and even within states. In many cases, I/DD is not tracked at all unless a person is receiving services through a state or federally funded program.
The lack of data leads to health disparities in a number of ways. For example, the lack of prevalence data can affect availability of funding and other resources, since allocation is often based on population size.
It is more difficult to identify issues that may uniquely or disproportionately affect people with I/DD, or to identify groups within the population of people with I/DD who may be disproportionately affected by any given issue. This can result in policies and programs do not meet the needs of people with I/DD as well as they could – or needs that are not being addressed at all.
The COVID-19 pandemic starkly illustrates the problem. People with I/DD were among those at highest risk of death or serious illness, but lack of data hamstrung efforts to mitigate that risk. Most states tracked and reported infections and deaths among people with I/DD living in nursing homes and larger facilities, but not among those who live with their families or in smaller group homes. This masked both the incidence of infection and the risk of poor outcomes, which in turn led to people with I/DD being excluded when limited vaccine supply required risk-based prioritization Lack of data continues to make it impossible to measure the true impact of the pandemic among the I/DD population,
Being counted is a health equity and civil rights issue. ACL believes having reliable health data is a core principle in order to more effectively support people with I/DD and the systems that support them. I/DD Counts aims to be that reliable resource tool to improve the nation’s health surveillance system for people with I/DD.
- November 3, 2023
I/DD Counts Initiative and Project Update:
These quarterly updates provide information from ACL and its collaborators on progress toward the ten-year plan to guide the development of the health surveillance system for people with I/DD. Access the document version of this report by clicking here.
The I/DD Counts Team wanted to hear directly from people with intellectual and developmental disabilities about researchers and policy makers collecting their health information and using the data they collect to understand how they are doing. The I/DD Counts team organized three focus groups to gather that information. A total of 16 adults with I/DD participated in the focus groups.
A member of the I/DD Counts team helped write a paper that was published in October 2023 about what the researchers learned. The important messages from that report are below:
Privacy is important to people with I/DD. They may not want to share all information with support providers, and they may not let strangers know that they have a disability. Relying only on reports by others (also called proxy reporting) may not give the full picture of their health. Some health care professionals have negative attitudes about people with I/DD and that makes it hard to talk with them
There is a need for better data on the health of people with I/DD. This includes information to improve health care and information about what they can expect as they get older (also called longitudinal data). This data should include information on mental health, dental health, and difficulties accessing health care.
It’s important to gather data about where and with whom people live. Health is influenced by people’s living situations.
Self-determination and choice are very important. People with I/DD should be part of the decisions about their care.
The I/DD Counts team hopes that the lessons from the paper will be shared with policy-makers, advocates, support providers, and program staff and health care providers.
For more details on the study and its findings, see:
Krahn, Cargill-Willis, Bersani, Moore & Johnson. (2023). Recruiting the voices of persons with intellectual and developmental disabilities in policy development: Priorities for health equity data. Intellectual and Developmental Disabilities, (October, 2023)
Federal Interagency Workgroup on I/DD Administrative Data:
This workgroup brings together people who work in different federal agencies. Workgroup members share information about ways their agencies are collecting or using data that describes the health of people with intellectual and developmental disabilities. The group also shares information about projects that their agencies are working on that will improve health related data.
We are learning more about people with intellectual disability in the United States by looking into information that is collected when people use public services like education and health care. This kind of information is called “administrative data” because it is collected to help provide or “administer” public services.
This quarter, a representative from the Office of Special Education Programs, US Department of Education, joined the workgroup. The workgroup learned about publicly available data profiles that can be used to discover how many children and young adults get special education services in each state, what kind of disability they have, race and ethnicity, gender, and whether they are English language learners. Referred to as “IDEA Section 618” data, these data profiles are on the Department of Education website.
This type of data is helpful in understanding more about the young people receiving special education services who have intellectual disabilities.
Assessing Outcomes Relevant for Patient-Centered Outcomes Research Among Adults Aged 18–64 with Disabilities and Federal Data Infrastructure Opportunities:
This report identifies individual- level measures for conducting patient-centered outcomes research (PCOR) relevant to adults with disabilities, aged 18–64 years. It identifies six broad outcome domains important to PCOR for this population from prior research, including: (1) social and community engagement; (2) choice and control; (3) employment and self-sufficiency; (4) privacy, rights, and human security; (5) health-related social needs; and (6) health and wellbeing. Additionally, the report identifies 32 sources of measures across the domains that include standardized tools/instruments, routinely fielded surveys, and administrative datasets.
Point of contact: Madjid Karimi, Madjid.Karimi@hhs.gov
Institute for Exceptional Care’s Project/Research Updates:
We have recruited data scientists from Epic, the largest electronic health record company in the country, and over 15 self-advocates with I/DD and family members to join our Making I/DD Visible team. This team is developing a machine learning tool that can detect the health records for people with I/DD, even if they don’t have a diagnosis of I/DD in their record. The team has decided to focus on a series of steps to detect autism, and separately, intellectual disability. We submitted an abstract to ARPA-H for potential funding, and are planning to submit an NIH grant proposal as well.
We have begun a study with Milliman, the healthcare actuarial firm, to estimate the number of people with I/DD by reviewing commercial health insurance records. We will compare what we learn to estimates of the number of people with I/DD based on other research including CDC ADDM monitoring, NHIS data, and (old) surveys of adults. We will describe the data based on types of I/DD, age, sex, and geography.
At the same time, we are planning an analysis with Mathematica Policy Research using TMSIS (the “Transformed Medicaid Statistical Information System'') data on people who are eligible for both Medicare and Medicaid. This project will also look at differences in I/DD prevalence based on whether specific states have policies related to educational or healthcare benefits that make certain I/DD diagnoses more favorable, (for example, policies that ensure learning accommodations only for children who have autism or ADHD, etc.) We will also examine differences in the prevalence of “substitute” diagnoses such as oppositional behavior disorder, which do not result in eligibility for public benefits and that people think could be more common among Black/Brown children than white children.
Point of contact: Mai Pham, firstname.lastname@example.org
Update from National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR)
The National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) funded seven new research grants addressing topics of interest for people with intellectual and developmental disabilities (I/DD). These research studies started September 1, 2023 and are described below:
- Developing approaches to support employment for people with I/DD using computer-generated sound or sight supplement to assist with job tasks
- Developing a new research center focused on improving opportunities for people with I/DD to participate in community living
- Understanding whether minority youth are prepared for the changes in health care that will take place when they become adults
- Training supervisors to work with individuals with I/DD to improve the employment experiences
- Making a new way youth and young adults with I/DD to improve community participation by improving accessible travel options for them
- Studying ways to do research with individuals with I/DD when researchers and subjects people are in different locations and are using tools like video conference to communicate Developing a new way to make employment better for adults with Autism
If you have questions contact: Amanda Reichard, Amanda.Reichard@acl.hhs.gov
Update from Centers for Disease Control and Prevention, Prevention Research Center, NYU/CUNY, Special Interest Project: Four State Disability and Health Data Analysis Collaborative:
A project team funded by the Centers for Disease Control/National Center on Birth Defects and Developmental Disabilities includes partners from Massachusetts, Kansas, South Carolina and New York will form a Disability and Health Data Collaborative (DHDC). The team will build on the work of the core group over the past 12 years. The goal of the current study is to compare the ways that different groups use health services. Those groups are:
- People with I/DD and severe mental illness;
- People with severe mental illness without I/DD and;
- People with I/DD without severe mental illness.
The project used two different data sources; the first source is Medicaid reimbursement files and the second is Center for Medicaid and Medicare (CMS) combined Medicaid and Medicare files, for people from birth to age 45. The analysis will look at differences in health services used by people who live in cities and those who live elsewhere. This is a two-year project that began in October 2022 and will go until October 2024. The audience for the research is the National Center on Birth Defects and Developmental Disabilities, the four state Medicaid agencies, the disability agencies in the four states, and advocates for people with I/DD and those with serious mental illness.
- Review data from the two data sources.
- Identify gaps and establish the diagnosis that will be included when doing the data analysis
- Ensure that the data are organized to allow the researchers to compare how the three groups use health services and understand how living in urban or rural settings or other demographic characteristics may affect health care use.
Issues or Challenges:
- One of the four states has not provided Medicaid data yet. This issue is being addressed.
- Since we meet every two weeks, we expect to stay on target and accomplish the stated goals during the next quarter.
Point of contact: Suzanne McDermott, Suzanne.Mcdermott@sph.cuny.edu
Update from Centers for Medicare & Medicaid Services (CMS): Disparities in Health Care in Medicare Advantage Associated with Dual Eligibility or Eligibility for a Low-Income Subsidy and Disability Stratified Report:
The Centers for Medicare & Medicaid Services’ Office of Minority Health (CMS OMH) released a report in July 2023 detailing the kind of care that people in Medicare Advantage (MA) received. The Disparities in Health Care in Medicare Advantage Associated with Dual Eligibility or Eligibility for a Low-Income Subsidy and Disability report shares information on people with Medicare Advantage in 2020. This report compares care for four groups of people in Medicare Advantage who have (1) dual eligibility for Medicare and Medicaid or eligibility for a Part D Low-Income Subsidy (LIS) and/or (2) a disability.
This report is based on an analysis of data from medical records and administrative data about care that Medicare Advantage enrollees received for many medical issues, including diabetes, cardiovascular disease, and chronic lung disease.
Access more information here.
Point of contact: Sarah Johaningsmeir, email@example.com
The I/DD Counts team will be presenting and having discussions with collaborators at these upcoming national meetings. Come find us!
- AUCD Conference (November 6-8, Washington DC)
- APHA Conference (November 12 - 14, Atlanta GA)
- TASH 2023 Conference (November 30 - December 3rd, Baltimore MD)
- July 31, 2023
The Administration for Community Living (ACL) is leading the I/DD Counts initiative in partnership with self-advocates, advocacy organizations, researchers, and U.S. Department of Health and Human Services agencies to:
1. Establish and maintain accurate data on the prevalence of intellectual and developmental disabilities (I/DD) in the United States and its territories, and;
2. Improve the collection, analysis and interpretation of the health-related data of people with I/DD.
These quarterly updates provide information from ACL and its collaborators on progress toward the ten-year plan to guide the development of the health surveillance system for people with I/DD.
- Federal Interagency Workgroup on I/DD Administrative Data updates
- Conferences (past and upcoming)
- What are the priorities for health data for adults with intellectual and developmental disabilities? It varies by whom you ask was published in the Journal of Policy and Practice in Intellectual Disabilities in July 2023
I/DD Counts 2022 Summit Report:
Published on May 18, 2023, the I/DD Counts Summit Report and Executive Summary summarize key discussions, findings and the next steps to identify present and future initiatives for data collection, linkage and analyses for people with I/DD. Both the Summit Report and Executive Summary shed light on various aspects of people with I/DD, including prevalence rates, access to healthcare and support services, employment opportunities, education, and overall quality of life.
Federal Interagency Workgroup on I/DD Administrative Data:
Collaborators in the Federal Interagency Workgroup on I/DD Administrative Data (FIW IAD) provided status updates on projects that are underway. The FIW IAD is an internal cross-departmental working group that addresses issues related to I/DD administrative data activities across the federal government.
FIW IAD Updates:
Office of Assistant Secretary for Planning & Evaluation (ASPE): Assessing Patient-Centered Outcomes for Working-Age Adults with Disabilities and Federal Data Infrastructure Needs and Opportunities
The project aims to conduct preliminary exploratory work to identify and assess the person-centered outcome measures important for advancing PCOR that address the needs of individuals with disabilities (including persons with I/DD). The project will:
Identify areas of focus for improving the collection of standardized measures important for advancing PCOR that addresses the needs of individuals with disabilities
Address current gaps in person-centered outcome measures for people with disabilities
Identify a need for improved measurement of outcomes that span the life course (childhood, adolescence, adulthood, old age) of this population.
Point of contact: Madjid Karimi, Madjid.Karimi@hhs.gov
I/DD Counts did a presentation on its work at the American Association on Intellectual and Developmental Disability (AAIDD) Annual Conference in June 2023. The main theme from the I/DD Counts Summit report was that it is leading engaged conversation with researchers, advocates, and providers of support about how to keep the work going and spur further collaboration.
I/DD Counts presented at the USAging in July.
I/DD Counts will be presenting about its work at the National Council of Councils on Developmental Disabilities (NASDDDS) Annual Conference and TA Institute.
I/DD Counts will be part of a session at the HCBS conference with ACL. The session title is: “New Frontiers in Health Equity for People with Disabilities.”
ID/D Counts will hold an additional session at the HCBS conference on state data collection and the power it holds for people with intellectual and developmental disabilities.
Relevant Journal/Academic Articles:
What are the priorities for health data for adults with intellectual and developmental disabilities? It varies by whom you ask
I/DD Counts recently published a paper on the priorities of different stakeholders for health data. The report summarizes findings from focus groups with adults with I/DD, family members, and researchers/practitioners. Themes that were common to all groups included: valuing people with I/DD and respecting their self-determination; affirming the need for data including longitudinal data; holding a holistic view of physical, mental, social and sexual health; and access to quality health care, medications and assistive equipment. Each group also contributed unique ideas such as importance of trust for disclosure of private information, stereotypes and discrimination, and social influences on health. Stakeholders identified specific health conditions to monitor, including COVID-19. Findings have implications for establishing a health surveillance data system, for agency decision-making, and for practice more generally.
Citation: Krahn, G., Cargill-Willis, K., Raymond, M., Bonardi, A., Havercamp, S., & Johnson, J. (2023). What are the priorities for health data for adults with intellectual and developmental disabilities? It varies by whom you ask. Journal of Policy and Practice in Intellectual Disabilities. http://doi.org/10.1111/jppi.12464
- May 18, 2023: I/DD Counts Summit Report and Executive Summary (ACL). In November 2022, ACL organized a national summit that included people with I/DD, representatives from federal agencies, advocacy groups, researchers, and health care providers. The group discussed progress on its 2030 roadmap for health data equity, remaining gaps, and priorities for the future. This report summarizes the key ideas from the summit and actions recommended by and for the I/DD Counts initiative.
- Working Through the Data Conundrum: Identifying People with Intellectual and Developmental Disabilities in National Population Surveys (ACL)
- Enriching our Knowledge: State and Local Data to Inform Health Surveillance of the Population with Intellectual and Developmental Disabilities (ACL)
- Road Map – Milestones for Advancing Knowledge on the Prevalence and Health Status of Individuals with Intellectual and Developmental Disabilities
- ASPE Project webpage: Integrated Dataset on Intellectual and Developmental Disabilities (iDIDD)
- Considerations for Building Federal Data Capacity for Patient-Centered Outcomes Research related to Intellectual and Developmental Disabilities (ASPE)
- Final report: COVID-19 and People with ID/D Final Report (ASPE)
- Issue brief: COVID-19 Data on I/DD (ASPE)
- Improving Health Care for Adults with Disabilities: An Overview of Federal Data Sources (CMS)
- Research on Developmental Disabilities (CDC)
Other Relevant Federal Disability Data Projects
- Administration for Community Living (ACL)
Project Name Purpose/Goal Dataset Used Primary Contact I/DD COUNTS The goal of the initiative is to increase our collective understanding about factors that affect the health and well-being of people with intellectual and developmental disabilities (I/DD), which will in turn support development of effective policies and programs to support them and their families. To this end, the steps being taken are to establish and maintain accurate data on the prevalence of I/DD in the United States and its territories, and improve the collection, analysis and interpretation of the health-related data of people with I/DD. N/A Katherine Cargill-Willis Katherine.Cargill-Willis@acl.hhs.gov The Surveillance and Health Status of People with I/DD Project ACL is working with the National Center for Health Statistics (NCHS) to develop questions to be used in the National Health Interview Survey (NHIS) to determine the prevalence and health of people with I/DD. N/A Katherine Cargill-Willis Katherine.Cargill-Willis@acl.hhs.gov Meredith Raymond Meredith.Raymond@acl.hhs.gov
- Assistant Secretary for Planning and Evaluation (ASPE)
Project Name Purpose/Goal Dataset Used Primary Contact Integrated Dataset on Intellectual and Developmental Disabilities To produce a publicly accessible dataset of linked Support Intensity Scale (SIS) scores, Medicaid claims, National Core Indicators (NCI) survey data, NCI COVID-19 supplement survey data, and other relevant state-level data for people I/DD to enhance person-centered outcomes research for people with I/DD. Medicaid Claims (state level), SIS-A, NCI-IPS Emma Plourde Emma.Plourde@hhs.gov Measuring Progress in Rebalancing Medicaid Long-Term Care Towards Home and Community-Based Services Among Older Adults To assess the extent states have rebalanced Medicaid-funded long-term services and supports (LTSS) from institutional LTSS to home- and community-based services (HCBS) between 2015-2019. Data analyses will use T-MSIS data to examine Medicaid LTSS expenditures that went towards HCBS and nursing facility care, as well as the use of both among all Medicaid LTSS users and various subgroups (e.g. older adults, young adults with adult-onset disabilities, and individuals with I/DD). Analyses will also involve identifying characteristics of state LTSS programs that correlated with greater rebalancing towards HCBS and calculating transition rates from the community to nursing facilities among older adults. T-MSIS Pam Doty Pamela.Doty@hhs.gov Chip Haltermann William.Haltermann@hhs.gov Disability Survey Design To design a questionnaire and methodology for a disability survey that could be fielded either as a supplement to an existing nationally representative survey or as a stand-alone survey. Project research questions include: What populations (e.g., children, working age persons, older persons) and types of disabilities (e.g., I/DD, work disability, HIPAA/LTSS, cognitive impairment) should be targeted in a disability survey? What domains and questions should be included in the survey? What are the best approaches to survey data collection (e.g., supplementing an existing internet panel or in-person, household-based survey; fielding a new survey)? N/A: data infrastructure development, survey Emma Plourde Emma.Plourde@hhs.gov HCBS Use during the COVID-19 Pandemic To understand changes in HCBS use during the COVID-19 pandemic and any associated health and mortality outcomes, as well as associations between HCBS use and emergency waiver flexibilities and how states implemented these flexibilities. The I/DD population is included as a focus. T-MSIS Chip Haltermann William.Haltermann@hhs.gov Judy Dey Judith.Dey@hhs.gov Equity in HCBS To understand how the use of HCBS services varies by race and ethnicity. Research questions include 1) Are there racial/ethnic differences in access to HCBS? 2) For beneficiaries with similar risk scores (HCBS), how does use of HCBS differ? (Charlson Comorbidity Index) T-MSIS Amanda Reichard Amanda.Reichard@acl.gov Judy Dey Judith.Dey@hhs.gov COVID-19 Episodes Project To observe expenditures of several Medicare FFS beneficiary populations, including the I/DD population, following a COVID-19 episode. Medicare FFS; Data types: CWF, EDB, MBSF Emma Plourde Emma.Plourde@hhs.gov Operational Definition for the Intellectual and Developmental Disabilities Population in Administrative Claims Data for Research To better understand variation in the selection of ICD-9 and ICD-10 diagnostic codes and corresponding I/DD conditions for inclusion in operationalizing I/DD in administrative claims data research—and explanations for these variations—as a first step to develop a consensus-based, standardized conceptual definition of I/DD and operationalizing of it to be used in health services and public health research. Part 1 was completed in FY22 and Part 2 will be completed in FY23. ICD-9 and ICD-10 codes Emma Plourde Emma.Plourde@hhs.gov Improving Data Infrastructure for Person-Centered Research on Intellectual and Developmental Disabilities The purpose of this project/commentary is to: 1) identify data infrastructure as a critical area to address knowledge gaps in health outcomes for those with intellectual and developmental disability (I/DD), with particular focus on the mandate of the Office of the Secretary’s Patient-Centered Outcomes Research Trust Fund (OS-PCORTF); 2) describe efforts to identify and prioritize OS-PCORTF data infrastructure enhancement opportunities; and 3) emphasize the role of disability researchers, policymakers, and advocates in these efforts. N/A- will mention some administrative data sources MJ Karimi Madjid.Karimi@hhs.gov
- Centers for Disease Control and Prevention (CDC)
Project Name Purpose/Goal Dataset Used Primary Contact Strengthening Public Health Systems and Services through National Partnerships to Improve and Protect the Nation’s Health: Addressing the Needs of People with Disabilities in COVID-19 Preparedness, Planning, Mitigation, and Recovery Efforts in the US To examine potential changes in health status and healthcare utilization during the COVID-19 pandemic among adults with I/DD, with particular attention to diagnostic and utilization patterns for select mental health conditions, for up to five state and/or territorial jurisdictions. People with I/DD aged 25 to <65 years enrolled in Medicaid throughout 2018–2020. Particular attention given to diagnostic and utilization patterns for select mental health and substance use conditions. Medicaid administrative data Jon Baio firstname.lastname@example.org
Catherine Rice email@example.com
Monitoring the health and well-being of people with disabilities before, during, and following public health emergencies: modernizing data systems to inform public health action To develop, test, and disseminate syndromic surveillance definitions to identify people with disabilities in order to build CDC and state, local, and territorial health department capacity to monitor the health and well-being of people with disabilities before, during, and after public health emergencies. This proposal aims to fill a significant gap in the public health response to identify people with disabilities by establishing a disability syndromic surveillance definition that can be utilized in emergency and ongoing surveillance efforts. Medicaid administrative data Joe Holbrook firstname.lastname@example.org Robyn Cree email@example.com Four State Disability and Health Data Analysis Collaborative To finalize the Disability and Health Data Collaborative framework to use to describe the health status and health services utilization of people with I/DD and other long-term disabilities. Medicaid files from NY, MA, KS, and SC, linked with other administrative data sources will be compared with data reports from the CMS T-MSIS to assess generalizability of the framework. One specific topic: psychiatric conditions among people with I/DD. Medicaid administrative data Elizabeth Burns firstname.lastname@example.org
- Health Resources & Services Administration (HRSA)
Project Name Purpose/Goal Dataset Used Primary Contact National Survey of Children's Health The National Survey of Children's Health (NSCH) is the largest national and state-level survey on the health and health care needs of children 0-17 years, their families, and their communities. The survey, and its sister survey, the National Survey of Children with Special Health Care Needs, have been in existence since 2001; in 2016, the two surveys were combined into a single survey (retaining the NSCH name) which is conducted annually. The sampling strategy includes screening randomly selected households for the presence of children, and then randomly selecting one child from each household for a detailed questionnaire. Questionnaires are completed via web or paper-and-pencil instrument, by a primary caregiver who is familiar with the child's health and health care. Jessica Jones JJones2@hrsa.gov
- National Institutes of Health (NIH)
Project Name Purpose/Goal Dataset Used Primary Contact Panel Study of Income Dynamics Child Development Supplement (PSID CDS) The Panel Study of Income Dynamics (PSID) is a longitudinal survey of a nationally representative sample of U.S. families begun in 1968. The PSID collects data on a wide range of economic, social, demographic, geospatial, and health factors that affect the well-being of American families. Recent innovations include adding a representative sample of families who immigrated to the U.S. between 1997 and 2017, adding new tools for training and data dissemination, new geospatial identifiers for PSID employer addresses, and the development of a web-based version of the PSID questionnaire.
*** The Child Development Supplement (CDS) is a research component of the PSID, with almost 50 years of data on the same families and their descendants. The CDS provides researchers with extensive data on children and their extended families with which to study the dynamic process of early human and social capital formation.
PSID CDS https://psidonline.isr.umich.edu/Guide/Brochures/CDS.pdf Fragile Families and Child Wellbeing Study | (princeton.edu) The Fragile Families and Child Wellbeing Study (FFCWS) is based on a stratified, multistage sample of 4898 children born in large U.S. cities (population over 200,000) between 1998 and 2000, where births to unmarried mothers were oversampled by a ratio of 3 to 1. This sampling strategy resulted in the inclusion of a large number of Black, Hispanic, and low-income families. Mothers were interviewed shortly after birth and fathers were interviewed at the hospital or by phone. Follow-up interviews were conducted when children were approximately ages 1, 3, 5, 9, 15, and 22 (began late 2020). When weighted, the data are representative of births in large U.S. cities.