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‼️Action Alert‼️

Tell the CDC that People with Intellectual and Developmental Disabilities COUNT

The Problem:

Proposed changes to the National Health Interview Survey (NHIS) would remove key questions that help identify people with intellectual and developmental disabilities (IDD).

Submit your comment on or before 
October 19 at 9 PM Pacific Daylight Time (PDT)

Why should I comment?

The National Center for Health Statistics within the U.S. Centers for Disease Control and Prevention (CDC) has proposed a redesign of the NHIS questionnaire that is used to collect and analyze health data across the country. 

The proposed NHIS redesign removes key questions that help identify people with IDD. 

The changes would leave out a question about whether a person's difficulties with learning, communication, mobility, or other issues that began before the age of 22, which is a key marker for identifying IDD. 

Other questions about challenges in learning or completing everyday tasks are also being removed that help identify people with IDD.

These questions are essential for understanding the experiences of the disability community. Removing these questions will make it harder to identify people with IDD in NHIS data and will hinder efforts to track and address the public health needs of people with disabilities.

The Administration for Community Living (ACL), which funds councils on developmental disabilities, sponsored those questions to improve identification of people with IDD in national survey data.

Tell NHIS to Keep these questions about:

• Learning: “Do you have difficulty learning new things, for example, at school, work, or in other places? Would you say no difficulty, some difficulty, a lot of difficulty, or you cannot do this at all?” 

• Receipt of Help: “Because of a physical, mental or emotional condition, does someone help you with everyday tasks such as grocery shopping, paying bills or visiting the doctor's office?”

• Age of Onset: “You said that you have difficulty with [insert functional difficulty]. Did [insert functional difficulty] begin before age 22?”  

Share your comments with the CDC by telling them:

• Who you are
• That you object to the removal of the questions listed above
• Why those questions matter to you or the disability community
• That you would like them to keep those questions  

You can find out more about the survey changes HERE.

Deadline to submit public comments: October 19 at 9pm PDT

For additional information about commenting on the NHIS redesign, please see the attached "Tips and Tricks." Follow THIS LINK to submit public comments.

Here is a quick guide with tips and tricks for commenting on the National Health Interview Survey Changes:

Tips and Tricks Guide

Please Note:

You may see other information about the NHIS changes stating the deadline for submitting comments as October 20. However the correct deadline is October 19 at 9 PM PDT.

We advance social and policy change so that people with developmental disabilities, their families and communities may live, work, play, and learn together.



Our vision is that all communities welcome and value people with disabilities and their families.

Impulsamos cambios sociales y políticos para que las personas con discapacidades del desarrollo, sus familias y comunidades puedan vivir, trabajar, jugar y aprender juntos.

Nuestra visión es que todas las comunidades acojan y valoren a las personas con discapacidades y a sus familias.

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