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I/DD Counts

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. 

Quarterly Updates

July 2024

This newsletter is written in plain language to make the information accessible to as wide a range of people as possible. It provides updates since the last newsletter that was released in March 2024.

July 2024 Newsletter PDF (2.5 MB)

Full text: 

July is Disability Pride Month! The 2024 theme is “We Want a Life Like Yours.” Disability Pride Month gets celebrated every July. This is the month that the Americans with Disabilities Act (ADA) was signed into law. This law prohibits discrimination against people with disabilities.

The Administration for Community Living (ACL) is leading the I/DD Counts initiative. They are working together with:

  • Federal government agencies,
  • Researchers, and
  • Self-advocates and advocacy organizations.

ACL and the people working on the I/DD counts project have these goals:

  1. Collect information on the number of people who have I/DD in the United States and its territories. A term used to describe how many people have a certain condition (like I/DD) is the “prevalence”.
  2. Gather better information about the health of people with I/DD. This includes data about how healthy people are and what services they use. It is important to have this information to make services better for everyone. 

Achieving these two goals will take changes in many areas. A national “road map” document lists the needed changes and steps to get them done.  

I/DD Planning Study for a Center of Excellence or Coordinating Center on I/DD Health Data

Background

One of the steps in the road map to improve data about people with I/DD is to set up an I/DD Health Data Center. This Center would be a national Center that coordinates I/DD health data. The Center will help to:

  • Focus on I/DD health data
  • Coordinate current I/DD health data activities
  • Help to build skills in using I/DD health data
  • Share information about how many people have I/DD
  • Help us learn new things about people with I/DD

There are lots of different projects and researchers looking at I/DD health data. This year, our contractor, Human Services Research Institute (HSRI), is doing a planning study to get information on different models for the structure and activities of a center, and ideas for how to coordinate current I/DD health research. HSRI is a nonprofit organization that works to improve systems to make life better for people that need services. The funding for this work is from the National Center for Birth Defects and Developmental Disabilities/Center for Disease Control and Prevention (NCBDDD/CDC) in partnership with the Administration on Disabilities /Administration for Community Living (AoD/ACL).

The team working on the planning study has met with over 60 people. The goal of the meetings is to get input on the planning study and the process for creating an I/DD Health Data Center. Some people we have met with include:

  • People with lived experience with I/DD
  • Researchers, including research from different countries including Ireland, Scotland, Australia and Canada
  • Federal agency representatives
  • People from advocacy organizations

Below is information from each group of conversations.

Conversations with People with Lived Experience

On April 1, 2024 the I/DD Counts team hosted two online (virtual) meetings with people who have I/DD. The purpose of the meeting was to get input on the planning study process for an I/DD Health Data Center. We shared information about the purpose of the planning study. We wanted to learn what people with I/DD thought about the planning study process and Center.

In general, they liked the idea of creating an I/DD Health Data Center and thought it was important. Involving people with I/DD in leadership roles and research at the Center was a common theme. It would be important to have people with I/DD employed at the Center. Different options should be available to provide input to the Center including:

  • Focus groups
  • One-on-one meetings
  • Meetings with self-advocacy networks and parent groups
  • Online surveys

The group came up with several important ways to get the information and documents into the hands of people with I/DD, researchers, and others who would be using the information about the health of people with I/DD including:

  • Sharing things on social media platforms.
  • Making sure information is accessible and in plain language.
  • Ensuring that information gets translated to other languages.
  • Having different ways to share the same information (i.e., written, videos, auditorial).
  • Having information written in a way that was easy to understand.

People with I/DD want to have meaningful opportunities to engage in I/DD health research. They should be paid for their time and expertise. This group talked about wanting more opportunities to be part of research initiatives. They want to be part of and co-author materials. They don’t want to only be asked to share their story with no meaningful engagement or follow-up.

International Panel Discussions

On April 2, 2024 the I/DD Counts team hosted a virtual meeting with researchers from other countries. There were three main goals of this meeting. The meeting provided an opportunity for:

  • Each country to learn from each other on ways to improve population health data for people with I/DD.
  • To inform planning efforts to improve health equity data in the US, specific to the population with I/DD.
  • To identify potential collaborations for improving population health data.

Countries included in this meeting were Australia, Scotland, Canada and Ireland. During the panel, they talked about how countries are learning more about the health of people with I/DD.

In Ireland, the IDS-TILDA study looks at how older adults with I/DD are doing health-wise over many years. They make sure people with I/DD are part of the study from beginning to end. In Canada, the H-CARDD project checks how adults with developmental disabilities get healthcare and use services. They connect health records and social service information to see what they can learn. Australia is also studying different health data to help people with I/DD. They worked on linking data around the health and wellbeing of people with ID in parts of Australia.

One big idea from all these projects is to involve people with I/DD in designing, collecting, and analyzing the research. Working together is important. Good data can help make better rules and plans to help people with I/DD live healthier all over the world.

Subject Matter Expert Interviews

Throughout April and May, the I/DD Counts held more than 17 subject matter expert (SME) interviews. We talked with different groups of people including people from:

  • Federal agencies
  • Universities
  • Advocacy Organizations
  • Researchers

The purpose of these interviews was to learn from people that have been a part of collecting I/DD data. We wanted to learn from them about the work they were doing. We asked questions related to:

  • Are there models for collecting and monitoring the health of groups of people that could be a good model to follow?
  • How would an I/DD Health Data Center be structured and sustained? In other words, are there certain activities that would be important? And how can the work of an I/DD Health Data Center continue year after year?
  • Who are the essential partners of a Center?
  • Are there any promising practices to help us better understand the health of people with I/DD?

We are working to summarize the information that we learned from these interviews. The summaries will help to provide recommendations to the ACL and CDC for the final report. Our next newsletter will have an update from this information.

In-Person Meeting and Poster Session at the American Association on Intellectual and Developmental Disabilities (AAIDD) Conference in Louisville, KY

The I/DD Counts team facilitated a 4 hour in-person meeting at the AAIDD conference on June 10, 2024. There were 10 advocates with lived experience of I/DD that joined the in-person meeting with support for travel and accommodations.

The advocates agreed an I/DD Health Data Center would make people with I/DD more visible in national discussions about health and equity. At this meeting, we spent most of the time talking about what activities an I/DD Health Data Center could do. The I/DD Counts team shared an overview of what we have heard so far through our activities of the planning study.

After discussing and learning more about each individual activity, the advocates voted on the activities they thought were most important for an I/DD Health data center. These were the top 5 activities:

  • Provide technical assistance.
  • Support advocacy and community engagement.
  • Create a data repository (to make data available for others to use).
  • Provide trainings to specific groups.
  • Collect data or information about the health of people with I/DD.

During the AAIDD meeting on June 11th, we had an interactive poster where researchers, providers, and federal employees got to vote on their top activity for the Center. People voted for what they felt was most important and most feasible. We received about 25 responses. People who voted felt that collecting data was most important. They felt that supporting advocacy and community engagement would be the most feasible activity.

We are working to summarize all information we learned from these conversations. This information will be part of the final report that we write. The report will have recommendations on what is important to consider when creating an I/DD Health Data Center.

Point of Contact:
Lindsay DuBois: ldubois@hsri.org 

Federal Interagency Workgroup (FIW) on I/DD Administrative Data

This workgroup brings together people who work in different federal agencies. Some agencies are collecting data on people with I/DD. They use the data to describe the health of people with I/DD.

We are learning more about people with I/DD in the United States. One way to do this is to use the information about people who use different services. Some services include education and health care. This information is also known as “administrative data.” It’s collected to help provide or “administer” public services.

Each month, participants in the Federal Interagency Committee on I/DD Administrative Data come together to review and share information. Members share updates on projects and data sources that help to improve what we know about health for people with I/DD in the United States. They discuss questions that their agencies are considering. The group tracks and shares resources related to I/DD data as well. Recent resources include:

  • The National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) 2024-2028 Long-Range Plan. This provides research activities to do over the next five years. It also shows progress made from the 2018-2023 goals.
  • NIDILRR Toolkit. This toolkit provides an overview of NIDILRR and their role. It provides information and resources in one place in a summary format.
  • The I/DD Counts team shared what they are learning from discussions about an I/DD Health Data Center. FIW members gave examples of ways to collect and use data.
  • The Disability Data Interagency Workgroup (DDIWG) that formed in 2024 by the White House Office of Science and Technology Policy presented. More information on that group is below.

Points of Contact:
Alixe Bonardi, abonardi@hsri.org; 
Amanda Reichard Amanda.Reichard@acl.hhs.gov

Disability Data Interagency Working Group (DDIWG)

The DDIWG is a group formed by The White House Office of Science and Technology Policy. There are more than 35 people from different federal agencies that are part of the group. This group focuses on improving disability data at the national level. They focus on disability data more broadly. But they are interested in finding out what the data issues are for the population with I/DD. They have three primary focus areas:

  • Community engagement. This includes listening sessions and a request for information (RFI). They want input from people outside the group about disability data. The closing period for input was July 15th. The DDIWG will be reviewing all comments submitted. This will help them to develop a Federal Evidence Agenda on Disability Equity.
  • Resources and infrastructure. There are many projects taking place around collecting disability data. There is not one single place to go to know what is being done. They want to create a "one-stop-shop" for people to find information about disability data.
  • Evidence Agenda on Disability Equity. This will be available in November. It will be a high-level overview. The focus will be to share what disparities people with disabilities experience. It will also show what needs to happen for better data. It will highlight specific themes of data needs, demographics, etc.

There is an upcoming virtual conference hosted by the Disability Health Equity Research Network (DHERN).

To be connected to the DDIWG, contact:
Alixe Bonardi, abonardi@hsri.org; 
Amanda Reichard Amanda.Reichard@acl.hhs.gov

Conference Updates

The I/DD Counts team will be presenting and/or having discussions with people at these upcoming national meetings. Come find us!

Contributions from:

Alixe Bonardi
Human Services Research Institute, 
Contractor to Administration on Disabilities, ACL
 

Lindsay DuBois
Human Services Research Institute, 
Contractor to Administration on Disabilities, ACL
 

Heather Young
Human Services Research Institute, 
Contractor to Administration on Disabilities, ACL
 

Gloria Krahn
Oregon State University, 
Contractor to Administration on Disabilities, ACL
 

Andrew Morris
Contractor to Administration on Disabilities, ACL

 

March 26, 2024

This newsletter is written in plain language to make the information accessible to as wide a range of people as possible. It provides updates since the last newsletter that was released in November 2023.

March 2024 Newsletter PDF (421 KB)

Full text:

March is Developmental Disabilities Awareness month. It is a time to celebrate people with disabilities being a part of our communities. The I/DD Counts project works to show that people with I/DD are important citizens of our country. It is important to find ways to include them in national data to help improve their health and well-being.

The Administration for Community Living (ACL) is leading the I/DD Counts initiative. They are working together with:

  • Federal government agencies,
  • Researchers, and
  • Self-advocates and advocacy organizations.

ACL and the people working on the I/DD counts project have these goals:

  1. Collect information on the number of people who have I/DD in the United States and its territories. A term used to describe how many people have a certain condition (like I/DD) is the “prevalence”.
  2. Gather better information about the health of people with I/DD. This includes data about how healthy people are and what services they use. It is important to have this information to make services better for everyone. 

Achieving these two goals will take changes in many areas. A national “road map” document lists the needed changes and steps to get them done.  

I/DD Planning Study

One of the ways to improve data about people with I/DD is to set up a national coordinating space. This will help to:

  • Focus on I/DD health data;
  • Help to build skills in using I/DD health data;
  • Share information about how many people have I/DD; and
  • Help us learn new things about people with I/DD.  

There are lots of different projects and researchers looking at I/DD health data. This year, our contractor, Human Services Research Institute (HSRI), is looking at different models to make sure these efforts are coordinated. HSRI is a nonprofit that works to improve systems to make life better for people that need services. The funding for this work is from the Center for Disease Control (CDC) National Center for Birth Defects and Developmental Disabilities within the Centers of Disease Control and Prevention (NCBDDD/CDC) in partnership with the Administration on Disabilities (AoD)/ Administration for Community Living (ACL).

We will meet with people that have experience in this area. This is also called a technical expert panel. We will write a report with the information that we collect. The report will provide recommendations on creating a center to coordinate this information. We will share ideas for things the center should do and data the center should focus on. The recommendations will also include how to coordinate the people and agencies that are focusing on I/DD health data.

Point of Contact: 
Lindsay DuBois: ldubois@hsri.org 

New Paper Published Describing Lessons Learned from I/DD Counts Focus Groups

In October 2023, the I/DD Counts team published a paper describing focus groups that took place in 2020. The focus groups asked people with I/DD how they feel about:

  • Having their health information collected
  • Using health information to learn how people with I/DD are doing.

The I/DD Counts team held three groups with people with I/DD to gather that information. A total of 16 adults with I/DD joined the groups. 

The important messages from the paper are below:

Protecting personal information is important

  • People with I/DD may not want to share all their information with people that provide support to them. They may not let strangers know that they have a disability. Some doctors or people that work in the medical field have negative attitudes about people with I/DD. This makes it hard to talk with them.

We need better information about the health of people with I/DD  

  • This includes information to make improve health care. It also includes information about what might happen as people with I/DD get older. This is also called longitudinal data. It should include information on mental health. It should also include information on dental health. It is important to know if people have a hard time getting the health care they need.

It’s important to gather information about where people live and who they live with

  • Where people with I/DD live and who they live with can impact their health. 

Self-determination and choice are very important

  • Self-determination means having support to make your own choices. People with I/DD should be able to make their own choices about their care.

These messages are important. They bring up issues that we need to consider when planning for the collection national health data on people with I/DD.  The I/DD Counts team hopes to share the information in the paper with:

  • Policymakers, or people who make decisions about support;
  • Advocates, or people that speak up for others;
  • Support providers, or people that provide support and work at the programs; and
  • Health care providers.

This paper is available to purchase. 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)

Points of Contact: 
Kathy Cargill-Willis, Katherine.Cargill-Willis@acl.hhs.gov 
Gloria Krahn, Gloria.Krahn@oregonstate.edu 

There are many projects working to improve health data for people with I/DD. Part of the I/DD Counts project is to keep track of them all and encourage connections between projects. I/DD Counts does this with two workgroups:

  1. The Federal Interagency Workgroup (FIW) on I/DD Administrative Data
  2. The Partners Workgroup

Federal Interagency Workgroup (FIW) on I/DD Administrative Data

This workgroup brings together people who work in different federal agencies. Some agencies are collecting data on people with I/DD. They use the data to describe the health of people with I/DD. They meet monthly to talk about data they are collecting. They work together to improve health related data.

We are learning more about people with I/DD in the United States. One way to do this is to use the information about people who use different services. Some services include education and health care. This information is also known as “administrative data.” It’s collected to help provide or “administer” public services.

This quarter the workgroup updated an environmental scan of projects. This is a way for us to learn about projects happening with different federal agencies. They are using this environmental scan to:

  • Support a planning study;
  • Be a resource for FIW members; and
  • Be the basis for I/DD Counts quarterly newsletters.

This group also talks about different conferences that are taking place. The workgroup shares information on presenting at a conference, where they would be to share updated information related to data collection and projects.

Points of Contact: 
Alixe Bonardi, abonardi@hsri.org 
Amanda Reichard Amanda.Reichard@acl.hhs.gov 

There are more than 30 projects and studies that are focused on improving health data on people with I/DD in the US. We are working to put the projects in a chart that will be available in our next newsletter so that everyone can learn about them. The rest of this newsletter will share highlights from a few of these projects.

Project Funded under Center for Disease Control and Prevention (CDC)

Association of State and Territorial Health Officials (ASTHO): Defining Disability for Syndromic Surveillance (this means doing a better job of making sure we know who has different types of disabilities).

ASTHO is leading a project related to definitions of disability. They want to understand how to support people with disabilities better. They are focusing on times when there is a public health emergency. They are looking at medical records and codes used to bill for medical services. This will help them understand how people use health care. They want to see if they can use certain codes to figure out who has a disability. They also want to see what types of medical care people with disabilities use. Once the project is complete, ASTHO will share what they learned with others.

This project has defined a list of codes. These codes can be used to identify people with impairments in seven areas, including:

  • Hearing,
  • Vision,
  • Mobility,
  • Intellectual and Developmental Disabilities,
  • Cognition and Central Nervous System Disabilities,
  • Specific Developmental or Learning Disabilities, and
  • Self-Care.

Some highlights from national testing:

  • On average, there were over 280,000 weekly visits at emergency rooms from people with different disabilities;
  • Average weekly visits were highest for people that had mobility concerns; and
  • Some people had more than one diagnosis code.

Some highlights from state/local testing:

  • In general, states report that the codes for disability did a good job identifying who has a disability; and
  • States did find that some people got identified as having a disability who don’t really have one. The states have shared their ideas for how to improve the disability codes.

ASTHO will finalize the definition of disability and the medical codes they used. When the project is complete, they will share what they learned with others. They will encourage people to use these standard definitions for disability.

Points of contact: 
Annie Evans, aevans@astho.org   
Maggie Nilz, mnilz@astho.org 

Assistant Secretary for Planning and Evaluation (ASPE)

Improving Data Infrastructure for Person-Centered Outcomes Research on Intellectual and Developmental Disabilities.

In 2022, ASPE published a report about improving data for research on I/DD. The report shares some information about their methods and what they learned.

ASPE worked with other organizations to find ways to improve data collection of data for people with I/DD. They interviewed more than 40 people who are experts in this area. They also put together different panels. After talking with various experts and people with lived experience, they identified 11 opportunities to make I/DD health data collection better. Five of the most important ways include:

  • Developing a standardized research definition of I/DD. This is another way of saying that it’s important for everyone to use the same definitions. If we all use the same definition, researchers will be able to get a better picture of people’s health from research studies.
  • Advancing data standards for service systems. This is another way of saying that we need to do a better job of making sure different data systems can “talk” or connect to each other. People with I/DD often use lots of different services. We can better understand how healthy people with I/DD are if the data from these different services can be linked.
  • Improving identification of I/DD at point of care. Identifying who has I/DD the first time a person seeks healthcare is important. This can be hard because not everyone wants to share their disability status with a healthcare provider. One potential solution is to develop tools for patients to self-report I/DD in their medical records.
  • Developing standardized outcome measures. Data are on the medical outcomes of people with I/DD; some examples of medical outcomes are well-being, education, employment, and community living. But there are no standard ways to measure these outcomes. Researchers should use the same methods to measure these outcomes. This would help us to understand if the help people receive improves their lives and health.  
  • Encouraging Medicaid data use for I/DD research. The government has put all state Medicaid records into a national collection of data that researchers can access. But people will do a better job of using the data if there are clear instructions about how to use it to look at health of people with I/DD.

It is important for people with I/DD, researchers, and government employees to work together. ASPE has an office called the Office of the Secretary Patient-Centered Outcomes Research Trust Fund (OS-PCORTF) that is working on these priorities. This office also developed a 10-year strategic plan to help move this work forward. With these projects, people with I/DD will start to be included more in data.

Point of Contact:
MJ Karimi, Madjid.Karimi@hhs.gov 

Conference Updates

The I/DD Counts team will be presenting and/or having discussions with people at these upcoming national meetings. Come find us!

  • AAIDD Conference (June 10-12, Louisville, KY)
  • NACDD Conference (June 24-26, Washington DC)
  • IASSIDD Conference (August 5-8, Chicago IL)
  • TASH Conference (December 5-7, New Orleans, LA)

Contribution from:

Alixe Bonardi
Human Services Research Institute,
Contractor to Administration on Disabilities, ACL
 

Lindsay DuBois
Human Services Research Institute,
Contractor to Administration on Disabilities, ACL
 

Heather Young
Human Services Research Institute,
Contractor to Administration on Disabilities, ACL
 

Gloria Krahn
Oregon State University,
Contractor to Administration on Disabilities, ACL
 

Andrew Morris
Contractor to Administration on Disabilities, ACL
 

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:

Quick Summary:

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, sex, 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.

Point of contact: Alixe Bonardi, abonardi@hsri.org; Amanda Reichard, Amanda.Reichard@acl.hhs.gov

Assessing Outcomes Relevant for Patient-Centered Outcomes Research Among Adults Aged 18–64 with Disabilities and Federal Data Infrastructure Opportunities:

Quick Summary:

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.

Access the full report and inventory here.

Point of contact: Madjid Karimi, Madjid.Karimi@hhs.gov

Institute for Exceptional Care’s Project/Research Updates:

Quick Summary:

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, mai.pham@ie-care.org 

Update from National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR)

Quick Summary:

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

Access the full report here.

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:

Quick Summary:

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.

Key Initiatives:

- 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.

Next Steps:

- 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:

Quick Summary:

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, sarah.johaningsmeir@cms.hhs.gov

Conference Updates

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.

Report Summary:

- The I/DD Counts Summit Report and Executive Summary were published on May 18, 2023

- 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:

Quick Summary:

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:

Quick Summary:

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

Quick Summary:

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

Conference Updates:

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

Quick Summary:

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

 

Related Resources

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                     xzb1@cdc.gov
Catherine Rice        cqr8@cdc.gov
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                            vzt4@cdc.gov                                  Robyn Cree                           nru7@cdc.gov
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                      ync7@cdc.gov
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.    

 


Last modified on 03/11/2025


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