2022 

I/DD 

COUNTS 

SUMMIT 

REPORT

Executive Summary

March 2023
BACKGROUND ON THE ISSUE

Reliable health data is important to supporting people with 

intellectual and developmental disabilities (I/DD). Being 

counted is a health equity and civil rights issue. 

Although data collection about people with disabilities 

generally has improved in recent decades, there is still not 

enough information on how many people with I/DD live in 

the U.S., how healthy they are, and what things affect their 

health. Many health surveys exclude questions about I/DD 

altogether, and when information about people with I/DD is 

collected, often it lacks other important information like age, 

sex, ethnicity, and race. In addition, the way data are collected varies widely among 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. We have known about this problem for decades, 

but the COVID-19 pandemic has shown how important it is 

to have data. 

Since 2016, the Administration for Community Living (ACL) 

has been working with federal agencies and other 

stakeholders to address these issues through the I/DD 

Counts initiative. I/DD Counts is a cross-agency initiative to 

improve how information about health of people with I/DD 

is collected, analyzed, and understood. I/DD Counts created 

and updated the 2030 Roadmap for Health Data Equity for 

Persons with I/DD.

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ABOUT THE 2022 SUMMIT

In November 2022, ACL organized a national summit that included representatives from federal 

agencies, people with I/DD, advocacy groups, researchers, and health care providers. The group 

discussed progress in implementing the roadmap, remaining gaps, and priorities for the future. The 

summit focused on six areas: 

Data needed by 

federal agencies

Data needed by 

advocacy groups 

What federal agencies are 

doing to improve data 

What other organizations are 

doing to improve data

How to share information 

from improved data

Tools and skills needed 

to improve data

This report summarizes the key ideas from 

the summit and next steps for the I/DD 

Counts initiative.

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KEY IDEAS

• Include people with I/DD from the start on all projects about their health.

• Make sure everyone with I/DD is included – not just “easy to reach” groups.

• Use a common definition of I/DD so that data from different surveys can be compared.

• Major progress has been made, but there are still gaps in data.

• Collect more data on those things that affect health (like where you live or if you can get health care) so

changes can be made to improve health.

• Collect data on things like race, ethnicity, gender identity, where a person lives, and income to understand

how these things may lead to differences in the health of people with I/DD.
NEXT STEPS

The summit recommended actions in five areas: 

Partnerships

• Include people with I/DD in all steps of the process.

• Build strong partnerships with federal and state government

agencies, health insurers, and organizations that have health data.

Survey Data

• Use the same definition of I/DD across surveys.

• Help people with I/DD self-report.

• Make guidelines about self-reporting by people with I/DD and when

other people can report on behalf of people with I/DD (proxyreporting).

Administrative Data

• Make these data easier to use and make guidelines for how to use

them.

• Understand how different states collect data and try to make it easier

to compare data across states.

Tools and Skills for Analyses

• Look at how things like race, ethnicity, or gender affect health of

people with I/DD.

• Consider creating more supports for better data collection and

analysis. These could include a Center of Excellence and more

training for people at the state level.

Sharing Information

• Develop information that is useful for different audiences like

policymakers, self-advocates, researchers, and health care providers.

• Develop guidelines for making information easy to understand,

actionable, and in plain language.

If these next steps are followed, we should have improved data by 2030 on how many people live 

with I/DD, their health, and their health needs.

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