I/DD COUNTS

Quarterly Newsletter

Date: November 9, 2023

Katherine Cargill-Willis, Program Specialist,

Administration on Disabilities

Meredith Raymond, 

Center for Policy and Evaluation

Administration for Community Living (ACL)

IDDCounts@acl.hhs.gov
I/DD Counts Initiative and Project Update:

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 10-year plan to guide the development of the health surveillance system for people 

with I/DD. 

The I/DD counts team wanted to hear directly from people with I/DD about what matters to 

them when researchers and policy makers use their health information. This includes how the 

information is collected and used to understand how people with I/DD are doing in the United 

States. 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 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 is 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 disabilities 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, U.S. 

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.

• 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) important 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

National Institute on Disability, Independent Living, 

and Rehabilitation Research (NIDILRR) 

Update from 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 for 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

Centers for Disease Control and Prevention, Prevention 

Research Center, NYU/CUNY, Special Interest Project: 

Four State Disability and Health Data Analysis 

Collaborative

Update from CDC

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 is building on twelve years of work. 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 in rural areas.

• 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

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

Update from CMS

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 the Medicaid 

Advantage program 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 D.C.)

• APHA Conference (November 12 - 14, Atlanta GA)

• TASH 2023 Conference (November 30 - December 3, Baltimore MD)

Contribution from:

Alixe Bonardi

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