The NCI Blog

The Riot 2011 National Conversation Series: Who’s in Charge?

Apr 21st, 2011 by Josh Engler | No Comments Yet »

**(from the Riot!)-

Announcing The Riot 2011 National Conversation Series: Who’s in Charge?

Each 90 minute discussion begins on the following Tuesdays at 2:00pm Eastern:

• May 3, 2011
• June 7, 2011
• July 12, 2011

Leader Moderator: Julie Petty

Highlighted Speakers:

• Commissioner Sharon Lewis, U.S. Administration on Developmental Disabilities
• Betty Williams, SABE President
• Chester Finn, SABE past president
• Stacey Milbern, NYLN
• Ari Ne’eman, Autistic Self-Advocacy Network President
• What helps people to be in charge of their own lives?  What gets in the way?
• What helps self-advocates to be in charge of their own groups?  What support is helpful?
• What can self-advocate leaders do to strengthen the self-advocacy movement?

To register, visit www.theriotrocks.org.

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Posted in Other

NCI in Parade Magazine

Apr 5th, 2011 by Josh Engler | No Comments Yet »

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: www.parade.com/health/autism/featured/autisms-lost-generation.html

We are also pleased to announce that three new NCI Data Briefs have just been posted to www.nationalcoreindicators.org, 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!

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Posted in Reports

Video Worth Seeing

Feb 25th, 2011 by Josh Engler | No Comments Yet »

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.   rtc.umn.edu/rtcmedia/wehavechoices/

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Posted in Other

The Importance of Data in a Confused World

Feb 16th, 2011 by Josh Engler | 1 Comment »

I came across the following article in Slate this past week (www.slate.com/id/2284662/?gt1=38001) 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.

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Posted in Uncategorized

NCI Data Used by Self-Advocates and Families

Feb 3rd, 2011 by Josh Engler | No Comments Yet »

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 jengler@hsri.org.

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Posted in Family Surveys

The Riot! unveils new website and supports artists with disabilities

Jan 21st, 2011 by Josh Engler | No Comments Yet »

The Riot! is a quarterly newsletter written by and for self-advocates.  Over its’ six years of existence  it has grown from an 8-page newsletter with a few subscribers to one that features products and services and has over 4,000 national and international subscribers.    Earlier this week, the new Riot website was launched and it includes a new online gallery featuring artists with intellectual and developmental disabilities and their work   The Riot! website supports these artists by giving them a platform for their work and the ability to make money from any work that is sold.  Please check out the new site at www.theriotrocks.org.

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Posted in Other

NCI Presented at International Disability Conference

Jan 6th, 2011 by Josh Engler | No Comments Yet »

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 jengler@hsri.org.

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Posted in Uncategorized