Learning More about Health of People with Intellectual and 

Developmental Disabilities (IDD) 

An Easy Read Summary of Two Reports* from the 

Administration on Intellectual and Developmental Disabilities (AIDD) 

of the Administration for Community Living (ACL) 

September 2019 

The information in this paper comes from: 

* Havercamp S, Krahn G, Larson S, and the National Health 

Surveillance for IDD Workgroup (2019). Working through the Data 

Conundrum: Identifying People with Intellectual and 

Developmental Disabilities in National Population Surveys. 

* Bonardi A, Krahn G, Morris A, and the State and Local 

Administrative Data for IDD Workgroup (2019). Enriching our 

Knowledge: State and Local Data to Inform Health Surveillance of 

the Population with Intellectual and Developmental Disabilities. 
 

 

 

 

 

 

 

 

 

 

 

Learning More about Health of People with IDD—Administration for Community Living 2019 

Target audience: 

This paper is developed for people with mild intellectual disability 

(ID) and some reading ability. 

Development: 

This paper was developed under contract by Gloria Krahn 

following the UK guidelines for Easy Read and US Department of 

Education guidelines (see below). The Disability Experience Expert 

Panel of the Nisonger Center’s Rehabilitation Research Training 

Center (RRTC) reviewed and provided valuable input. 

UK Department of Health (2010). Making written information 

easier to understand for people with learning disabilities. 

https://www.gov.uk/government/publications/making-writteninformation-easier-to-understand-for-people-with-learningdisabilities-guidance-for-people-who-commission-or-produceeasy-read-information-revised-edition-2010 

US Department of Education (2014). Going public: Writing about 

research in everyday language. 

https://files.eric.ed.gov/fulltext/ED545224.pdf 

Recommended citation: 

Administration for Community Living (2019). Learning More about 

Health of People with Intellectual and Developmental Disabilities (IDD): 

An Easy Read Summary. 

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Learning More about Health of People with IDD—Administration for Community Living 2019 

I. THE PROBLEM: We don’t know how healthy people are 

who have intellectual and developmental disabilities 

(IDD). 

“IDD” means “intellectual and developmental disabilities” 

We know a lot about how healthy people are in general. 

But, we don’t know very much about how healthy people are if they 

have intellectual and developmental disabilities (IDD). From some 

studies, we think people with IDD have more health problems than 

others. But, we don’t know if that is true for all people with IDD across 

the U.S. 

That is because people with IDD (intellectual and developmental 

disabilities) often are left out of research studies and surveys. That 

often happens for people who live in institutions. 

And, if they do participate in research surveys, researchers often don’t 

know which answers came from people with IDD, so they can’t develop 

facts about people with IDD. 

What we need to know is: 

• How many people in the U.S. have IDD (intellectual and 

developmental disabilities)? 

• How healthy are they? 

• What health problems do they have (like asthma, 

depression, diabetes)? 

• What helps people with IDD be healthy? 

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Learning More about Health of People with IDD—Administration for Community Living 2019 

People provide data for analysis. These data help governments 

and others know: 

• What programs are needed to help people with IDD

(intellectual and developmental disabilities) be healthy?

• Is money being spent for the right programs?

• How much does “where you live” matter for access to

programs? (like group homes, or in the U.S. territories)

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Learning More about Health of People with IDD—Administration for Community Living 2019 

II. WHAT WE DID—Develop Workgroups to Learn More 

A group of people met to talk about this in November 2017. It was 

people from: 

• Government agencies 

• Advocacy groups and people with disabilities 

• Researchers from around the U.S. 

They agreed there are two ways to get this information: 

• One way is from U.S. national surveys. We need to see what 

questions are needed so we can learn more about people with 

IDD (intellectual and developmental disabilities) across the U.S. 

• The second way is from state programs like Developmental 

Disability (DD) services and education programs. Programs that 

already collect information on people with IDD include: 

o DD (Developmental Disability) Services 

o Education 

o Health care 

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Learning More about Health of People with IDD—Administration for Community Living 2019 

In 2018, we formed two national workgroups to see how to do this: 

1. National Survey Workgroup to look at US surveys. 

2. State Data Workgroup to look at what data are available in 

states. 

National Survey Group State Data Group 

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Learning More about Health of People with IDD—Administration for Community Living 2019 

III. WHAT THE WORKGROUPS LEARNED 

A. U.S. NATIONAL SURVEYS 

We can learn more about health of people with intellectual and 

developmental (IDD) from surveys that are already used. A survey is a 

set of questions that is asked of people around the country. Their 

answers are called data. The people who give their answers are called 

the sample. 

A Survey is a set of questions that is asked of many people. A 

national survey asks people all around the country. One of the best 

surveys for health is the National Health Interview Survey. 

The Sample is the people asked to answer the questions. It costs too 

much money to ask everyone. Instead, we choose people so that 

everyone has the same chance – like putting names into a basket and 

pulling out a few. If your name is pulled, you are part of the sample. 

Data are the answers that people give to these questions. Answers 

are added up (or analyzed) to see how many people answer the same 

way. 

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Learning More about Health of People with IDD—Administration for Community Living 2019 

Survey: Questions answered by Sample to give Data 

“Do you...?” 

+ =

Questions + Sample = Data 

•

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Learning More about Health of People with IDD—Administration for Community Living 2019 

1. WHAT WE LEARNED ABOUT SURVEYS: 

Some surveys already have questions that ask: 

• Are you able to see? 

• Are you able to hear? 

• Are you able to talk or sign so others understand you? 

• Are you able to take care of yourself, like bathing and dressing? 

• Are you able to earn money to pay for what you need? 

• Are you able to walk or move around? 

These questions help identify people with some kinds of disabilities 

(like vision, hearing, walking). 

But surveys don’t have questions that identify people with intellectual 

disabilities. So, surveys need to add questions that ask: 

• Do you have problems with learning or remembering? 

• Do you need help to do things outside your home, like going 

shopping or seeing a doctor? 

• How old were you when you first started having these 

problems? 

Some surveys ask about seeing, hearing, talking, walking or moving, 

and taking care of yourself at home. 

But, surveys usually do NOT ask about learning, needing help 

outside of home, and age when these problems started. 

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Learning More about Health of People with IDD—Administration for Community Living 2019 

If surveys have these extra questions, they can help us know how many 

people in the U.S. have IDD (intellectual and developmental 

disabilities). This is called the prevalence of IDD (intellectual and 

developmental disabilities). Prevalence is a specific kind of percent or 

ratio. 

Prevalence is a specific kind of percent or ratio. It is a number that 

says: 

“of all the people in the country, how many are like this?” 

For example, the prevalence of females in the U.S is 50.8%, or about 

51 of every 100 adults is a female. 

U.S. Adults 

females males 

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Learning More about Health of People with IDD—Administration for Community Living 2019 

2. IDEAS FOR SURVEY NEXT STEPS: 

• The National Health Interview Survey is one of the most useful 

surveys on health of people in the U.S. Work with people from 

the National Health Interview Survey to develop these new 

questions. Test the new questions to see if they work. 

• Use and analyze these questions every year to track any changes 

that might happen over time. These questions should be used in 

other surveys too. 

• Continue to have government agencies work together on this. 

• Not all people from the U.S. Territories are part of surveys now. 

The U.S. Territories are American Samoa, Guam, the Northern 

Mariana Islands, Puerto Rico, and the U.S. Virgin Islands. People 

who live in the Territories need to be added to the sample of 

people who answer the surveys. 

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Learning More about Health of People with IDD—Administration for Community Living 2019 

B. STATE PROGRAMS 

The second way to learn about health of people with IDD (intellectual 

and developmental disabilities) is by looking at state programs. These 

programs already collect data on the people they serve. These are 

called administrative data. 

Administrative data are the information that programs collect to 

show what they do and whom they serve. 

These are programs like: 

• Special Education –how many children and youth get special 

education services in school? 

• State Developmental Disabilities Services—how many adults get 

different services for disabilities? This includes National Core 

Indicators data. 

• Public health insurance (Medicaid and Medicare)—how many 

people have their health care paid by the government because 

they have IDD (intellectual and developmental disabilities)? 

By looking at data in these programs, we can learn more about: 

• Who are the people getting these services, like their race 

and age? 

• What other disabilities do they have? 

• What health services do they use? 

• What is the rest of their life like that helps them be healthy, 

such as “where are they living?” 

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Learning More about Health of People with IDD—Administration for Community Living 2019 

1. STATE EXAMPLES: 

Many states are doing things to get better data about people with IDD 

(intellectual and developmental disabilities). 

The workgroup described a few examples of states doing new things to 

understand health of people with disabilities: 

A. Washington State has a program that reaches out to find people 

with disabilities who are not getting disability services. This gives 

information on what the needs are of people who are NOT getting 

services. 

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Learning More about Health of People with IDD—Administration for Community Living 2019 

B. South Carolina and Ohio link data from different programs to 

learn more about people with disabilities. 

Data from one program (like DD Services) is linked with data from 

another program (like Education) to learn more about people with 

IDD (intellectual and developmental disabilities). 

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2.5

2

1.5

1

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Data Program 1 + Data Program 2 = Better Data 

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Learning More about Health of People with IDD—Administration for Community Living 2019 

C. California is looking at race and language of people with 

disabilities to see what helps some people be healthier. This study 

can also see if some groups of people are not as likely to get 

services. 

D. Ten states are looking at the public health insurance (Medicaid) 

data to learn about the diseases and health care that people with 

disabilities get. Those states are in green below: 

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Learning More about Health of People with IDD—Administration for Community Living 2019 

2. IDEAS FOR NEXT STEPS FOR STATE DATA: 

• Have different programs use the same ways to identify people 

with IDD (intellectual and developmental disabilities)—this would 

let us compare data across programs. 

• Do more research to answer key questions, like what are the best 

practices across states. 

• Train more people to use data to show state programs what is 

needed. 

• Get the word out to more people on the health of people with 

IDD. 

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Learning More about Health of People with IDD—Administration for Community Living 2019 

IV. SUMMARY: 

A. To plan services, governments and others need good data on: 

• how many people have IDD (intellectual and developmental 

disabilities)? 

• how healthy are people with IDD? 

• What helps them be healthy? 

B. Two ways to get better data are: 

• Add new questions to surveys so we can see who has IDD. 

• Use data that states already collect about people getting 

services for IDD. 

Better Data about people with IDD can mean 

Better Services and 

Better Health! 

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Learning More about Health of People with IDD—Administration for Community Living 2019 

What the Words Mean—Glossary: 

Administrative data is the information that programs collect to show 

what they do and whom they serve. 

Data are the answers that people give to questions. Data are the 

answers added up to see how many people answer the same way. 

Prevalence is a number that says, of all the people in the country, 

how many are like this? 

Sample is the people who are asked to answer the questions. 

A Survey is a set of questions that is asked of many people all around 

the country. 

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