Guest guest Posted November 10, 2004 Report Share Posted November 10, 2004 is and has been on the census. Martha (Missouri) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2004 Report Share Posted November 10, 2004 Hi , Here in CT we are involved in the New England Center for Deaf/blindness....through the Board of Education and Services for the Blind...it is the deaf/blind program The program serves birth and up...I did not find out about it until was 4...I was reading the second 1/2 of the CHARGE manual and the page about hot dog does not always equal hotdog....I brought that page into show the team...they were confused because they told me that deaf/blind is totally deaf and totally blind..... has some hearing and some sight...I re-read that section of the manual...and did some research...I found connections for the support group and the contact people at the project..I called everyone ... now gets services from BESB and is a member of NEC for deaf/blindness... The school is finally beginning to understand the uniqueness of deaf/blindness... just turned 7 Ellen Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter) please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2004 Report Share Posted November 10, 2004 Aubrie has been included in the db census in IL since birth and has always received db services. It's been invaluable. Even though her worst eye and worst ear don't meet the legal def of db, she qualifies based on CHARGE. Michele W Aubrie's mom 6 yrs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2004 Report Share Posted November 10, 2004 HI , I do think many people miss out on services from our deafblind projects, because we are not aware of the many children they serve. I think it the child has CHARGE, they should at least be assessed by the local project to see if they qualify. It is not just for people who are totally deaf and totally blind. I have been Parent Liaison for the Arizona Deafblind Project since Dylan was 1. Kim Mom to Dylan 8 CHaRGE, Kayla 13, Tyler 16 Deafblind I would like to know how many of us have our children on the Deafblind Census in their state? I ask this question due to the fact that I am now working with our Deafblind Outreach group here in Texas. I did not realize that in the state of Texas that if a person has a syndrome that could progress, that would qualify them for DB services. I was just curious at how many states have this and how many people were aware of this? Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter) please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2004 Report Share Posted November 17, 2004 GRRRRRR! Kim L deafblind , My daughter was on the Iowa DB Census. When I inquired about some services, I was told that she was no longer in the system due to a computer crash. I tried to get her back on the list, but now they are saying she no longer qualifies to be on the registry. However, when you look at the eligibility guidelines, CHARGE is listed as a qualifying disability. We just made another attempt to get her on the registry and so far we have not been successful. Sheryl Mom to Mitch 19 & 18 CHARGE Quote Link to comment Share on other sites More sharing options...
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