There are currently two opportunities to write a public comment to the federal government about upcoming policy changes. Submitting a public comment is one of the easiest, and best, ways to have your voice heard, and let our government officials know how policy changes could impact people with disabilities.
For decades, the federal government has collected health information through surveys and counts, like the U.S. Census. These surveys collect important information that helps fund important organizations, like Developmental Disabilities Councils! These important surveys collect critical information about our communities, including how many people have disabilities. This information helps us:
- Know how many people with disabilities are out there.
- See if people’s lives are getting better – or worse.
- Make sure funding goes where it’s needed.
- Help leaders make better decisions about services, supports, and policies.
Read below to learn more about two different public comment opportunities. The Council will submit educational comments on behalf of our organization, but we need as many voices as possible to make a change!
The CDC is proposing to remove many disability questions from its annual survey. This survey has existed for decades, and includes questions that help make sure people with intellectual and developmental disabilities (I/DD) are counted.
Why does this matter?
If people with disabilities aren’t counted, they can get overlooked.
Federal programs use disability data to help decide how much funding states receive for programs and services. If fewer people with disabilities are counted, states and communities could receive less funding for the people who need it.
That could mean fewer dollars for schools, state agencies, community programs, and other supports. The proposed changes could start in 2028 and affect disability data for the next 10 years.
Write, or upload, your comment here.
Tell the CDC:
- Which disability questions should stay.
- What questions should be added to make sure people with I/DD are counted.
- Why accurate disability data matters to you and your community.
Public comments to the CDC are open through October 20, 2026.
Every 10 years, the Census counts people living in the United States. That count helps determine political representation and how communities are understood and served. Now, the Census Bureau is proposing big changes to who gets counted and what information is collected.
Why does this matter?
If people are left out, communities can be left out, too.
Census data helps us understand who lives in our communities and what people need. It can also be used to help make decisions about funding, services, planning, and representation. The proposed changes would remove questions about race and ethnicity from the main Census questionnaire. The Census Bureau says it plans to rely more on other government records and surveys for some information.
For people with intellectual and developmental disabilities, having accurate information matters. We need good data to understand our communities, identify unmet needs, and make sure people are not overlooked when decisions are made about services and supports.
The Census Bureau is accepting public comments through November 2, 2026 at this link!
Tell the Census Bureau:
- Count everyone who lives in our communities.
- Keep collecting the information needed to understand our communities.
- Make sure people with disabilities and other communities are not made invisible in the data.
- Use accurate data to help communities plan for the services and supports people need.
People with I/DD count. And we need the data to prove it
