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Article on CHARGE Syndrome

Here is an article written by a friend of ours. Liz Lewis has a sister who is an adult with Charge Syndrome.  Liz is also an anthropologist who uses her profession to better understand the disability community.  Her latest article,  In the Community but Alone is about her sister's community living arrangement and, more broadly, on the need for more social inclusion and services for adults with disabilities in our communities.  She has given me permission to share so feel free to pass it on if you like.  Also, I encourage you to check out Bloom (a blogspot for parents who have kids with disabilities). 
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High Touch and Low Incidence - What I have learned from the Deafblind Census

In a conversation I had with Jay Gense, director of the National Consortium on Deaf-Blindness (NCDB), he estimated the incidence of deafblindness for children and youth birth to 22 years old in the United States is around .01%. The incidence in Texas is slightly higher at about .017%.  This means that out of the 4 million plus students in public education in Texas, around 750 are identified as having both hearing and vision problems.  Here is a different perspective:  4 million miles will take you around the Earth at the equator 161 times.  It is almost exactly a 750 mile drive from Houston to El Paso.  Quite a difference (And you thought Texas was so big!). One of the lessons I have learned from looking at the Deafblind Census is that no two of the students are alike.  There may be 79 students who are considered deafblind as the result of...
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