Back to Parent to Parent's Family Voices of Vermont page

You can share important new data about CSHCN to help your legislators understand the size and impact of the population of cyschn.

A brand new,  interactive website, the Data Resource Center, built by the CAHMI (with help from Family Voices!) can give you lots of information about cyshcn in every other state as well as the nation, based on the National Survey for Children with Special Health Care Needs conducted by the Center for Disease Control and funded by MCHB. 

The data is available on a new interactive website:  www.cshcndata.org  This site lets you "query the data"  (ask for findings from specific questions that were asked in this first time national  survey)  on a large number of topics.  There is also a lot of information on the survey itself, the topics covered, etc.  The data was carefully collected, in the most scientific way, and is representative of every state and the nation. It has been "weighted"  (by the CDC using census data) to estimate the number of actual children with special health care needs in every state, HRSA region and in the nation.

Here's how to find out the % and numbers of children 0 - 17 years old with special health care needs in each state, and in the nation, by using this new Data Resource Center:

  1. Go to www.cshcndata.org
  2. You will arrive at the homepage of the Data Resource Center; click the yellow "Data" button on the left
  3. You will arrive at the homepage for the National Survey of CSHCN; click the "Start a new data query" button on the left
  4. For "state/region"  select "nationwide"
  5. For  "topic", select "child/youth with and without special health care needs
  6. Press "Next" button, you'll go to the next page
  7. For "question", select "How many children have special health care needs"
  8. Press "Next" button
  9. You'll get a table, and graph with the % of cyshcn for the nation.  The "weighted estimate" tells you the estimated actual number (with 95% confidence) of cyschn in the state/region/nationwide 
  10. Nationwide that number is 9,360,356
  11. To find out the number for YOUR state, click "compare to another state/region"
  12. Select your state and click "next"
  13. You'll get a chart showing your state and the nation, % of cyschn, and also the weighted number representing the estimate of actual children

Explore around the site.  Lots of info from the National Survey is already posted, and more is coming every day. If you have a problem, need help, or have a comment about the site, you can e-mail the staff at CAHMI through the "Ask a question" button on the home page.

There is also a State Profile page for every state.  To find it, from the home page, click on "Data."  Then Click on "State Profiles" .  A map allows you to find a profile for every state, which includes prevalence of cyshcn at the child level, household level, by age, sex, poverty level, race/ethnicity.  It also includes findings on child health, health insurance coverage, access to care, family centeredness, and impact on family.  This would be an awesome page to print and send off to educate your legislator on just how important the FOA is!!

Please let us know if we can help you explore this important data.