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Author: Josh Engler (X)

  • The latest issue of The Riot!, We are Family, has been released and can be accessed at Riot! is a newsletter written about self-advocacy by self-advocates.

  • Eureka!  After almost a year and half of blood, sweat, and tears (the blood and sweat metaphorically), the new and improved NCI website is up and running.  HSRI and NASDDDS staff had meetings, discussions, ideas, more meetings, changed ideas, met some more, reverted back to original ideas, and finally made decisions.  We also learned more technical geeky programming jargon than most of us ever wanted to.  A big "thank you" to our wonderful web developers Steady Vision who created what we think is an interesting, informative website. 

    So we hope you can take the new site out for a spin.  Create your own chart of NCI data filter by state, type of residence, year, and many others; take a look see at your state's public page to access their most recent state reports; and of course, check out the most recent NCI Blog post.

  • HSRI and NASDDDS staff attended the annual meeting of the Alliance for Full Participation entitled, “Summit 2.0- Real Jobs- It’s Everyone’s Business” with the goal to “find solutions to the challenges facing increasing integrated employment for people with intellectual and developmental disabilities.”  We were out in force to display NCI as prominently as we could, and were ecstatic that so many state workers, providers, university researchers, parents, and self-advocates were interested in NCI data or already knew about it being used in their state.  Some people even came by to say "hi" to us at the HSRI/NASDDDS booth (see below- what it lacked in high-tech electronics and design was made up with the sparkling wit and personalities of the staff).

    This conference was unique in that self-advocates could not only learn about employment policies and practices across the country, but could get more practical assistance including getting advice on how to find a job, learning how to conduct themselves on an interview, and even have a resume made for them on the spot.  Self-advocates handing out their resumes and business cards was a wonderful sight to be seen and hopefully these conferences will see much more networking in the future.

    For more information on this conference, please visit the AFP website at  Additionally, be on the lookout for three new NCI Data Briefs on employment (one of which presented at the conference) which will be released over the next few weeks.

  • This past weekend Parade Magazine’s feature story on “Autism’s Last Generation” cited NCI.  The article references an NCI Data Brief on Autism from 2008. 

    You can read the article here:

    We are also pleased to announce that three new NCI Data Briefs have just been posted to, including an update of the Autism issue.  You can find them on the reports page.

    Spread the word and join us in observing National Autism Awareness month!

  • You all should check this out- "We Have Choices," a documentary from the Self-Advocacy Association of New York, is being considered for a People Choice Award at this year's Telly Awards competition.

  • I came across the following article in Slate this past week ( which says that even though data shows the crime rate in the U.S. has severely dipped over the last two decades, most Americans believe that it's getting worse.  My grandmother would be a prime example of "most Americans."  On more than one occasion, "it never used to be this bad" has been heard coming out of her mouth when talking about the crime that gets so theatrically broadcasted on the local news .    It "kills" me to hear her say that because she spends so much time and energy worrying about crime; much unneeded stress which could be better spent worrying about her near-perfect grandsons.

    News stories and anectdotes are both important, especially as a reminder that not all people have the same experiences.   I'm certain the famillies of the scores of murder victims this week will find no comfort in that overall crime is not as bad as most people think.  But data is ever so important to get a sense of what is actually happening in our so called lives.  I feel fortunate that I get to work on the NCI project which has such rich data on the lives of people with developmental disabilities.

  • HSRI and NASDDDS staff were in the beautiful state of Washington last week to observe Lisa Weber and the rest of the WA NCI team in action.  Part of the agenda included attending a DD Council focus group meeting.  This meeting was made up of self-advocates, family members of children with developmental disabilities, and DD Council staff, and was the second in a three-part series where NCI data was reviewed in order to make policy recommendations to the Divison of Developmental Disabilities (DDD).  The group reviewed 2008-09 Child Family Survey data which was organized where the WA data could be compared to the "NCI average", as well as compared to WA data from previous years. 

    Each of the self-advocates and family members contributed greatly during the meeting.  Some of the main topic areas discussed were: information regarding services and process, computer technology in service information and service use,  and community inclusion.

    In the upcoming weeks, the group will be finalizing their recommendations to the DDD.  We would like to thank the DD Council and the DDD for allowing us to be part of this meeting.  We were very honored to hear the shared stories and experiences of the group, and are very proud that NCI data is being used in order to create positive change.

    If you would like further information on this group and how Washington uses NCI data, please contact me at

  • HSRI's Val Bradley and Sarah Taub recently attended the 2010 International Association for the Scientific Study of Intellectual Disabilities (IASSID) in Rome, Italy.  They presented on preventative health care outcomes which primarily came from data from many of the new Health indicators that were added beginning in the 2008-09 data cycle. 

    One of the more interesting findings was that individuals who resided with their families and in other community-based settings were not as likely to receive preventative health screenings (e.g., colorectal exams, eye exams) as those in institutional settings.

    Val and Sarah (and co-author Julie Bershadsky) are writing a paper on these findings and their peer-reviewed abstract has been published in the Journal of Applied Research in Intellectual Disabilities:

     Bradley, V., Taub, S., & Bershadsky, J. (2010). Using consumer survey data in the USA. (Abstract). Journal of Applied Research in Intellectual Disabilities, 23(5), 469.

    For more information regarding Val and Sarah's presentation or the preventative health care paper, please contact Josh Engler at