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The Autism Network for Deaf/Hard of Hearing
and Blind/Visually Impaired


 Autism Research Institute
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San Diego, California 92116 USA

 

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Welcome!

 

Welcome to the second issue of our e-newsletter dedicated to those on the autism spectrum who are deaf/hard of hearing or blind/visually impaired. Several people wrote to us about the previous name of the Network, so we changed it to be consistent with the views of the community. Please contact us if you have any suggestions or comments about this network. Our email address is: HearingVisionNetwork@autism.com

  

The Network's mission is to raise awareness of communication and education needs as well as to promote advocacy and research for those who have autism and are deaf/hard of hearing and/or blind/visually impaired. 

 

Margaret Creedon, Ph.D., ABPP

     and Steve Edelson, Ph.D.

April 28th MEETING FOR THE NETWORK:
NEWARK, NJ

 

The Autism Research Institute (ARI) is sponsoring a meeting with parents and professionals who are interested in those with autism who are deaf/hard of hearing and/or blind/visually impaired. Our discussion will focus on current issues and ways we can move the mission forward.

 

The Network meeting will be held in New Jersey at the Newark Liberty International Airport Marriott, on Saturday, April 28, at 12 noon. There is no charge to attend, and a light lunch will be provided. If you plan to attend the meeting, please let us know in advance by sending a note to: HearingVisionNetwork@autism.com.

 

Note: This meeting will be held during ARI's upcoming conference; if you plan to attend the conference itself, you will need to register at www.ARIConference.com.
PROJECT JULIA's WORLD BLOG

  Julia - photo for hearing visual enews 

Meet Julia. Julia has autism, and she is deaf. Her blog, titled Project Julia's World, shares information about herself and other programs for the deaf. You can visit at: http://projectjuliasworld.blogspot.com/

 

In 2010 Julia's mother, Kimberly McGuiness, received the Presidential Citizens Medal for her advocacy for deaf students (http://www.whitehouse.gov/photos-and-video/video/2010/08/06/citizens-medal-winner-kimberly-mcguiness). We will share more information about Julia and her mother in future issues.

DEAF CHILDREN'S
BILL OF RIGHTS 

 

State by state, a coalition of educators, parents, and consumer organizations have been collaborating to promote a 'Bill of Rights for Deaf and Hard of Hearing Children' (See link: http://www.nad.org/issues/education/k-12/bill-of-rights). This 'Bill of Rights' includes assessment and prioritization of communication needs that should be determined by qualified teachers and service providers. The 'Bill of Rights' also includes the creation of opportunities for same communication-mode peers to interact with one another as well as with adult role models in more integrated settings.   In addition, deaf and hard of hearing children should have access and equal benefit from all services and programs at their schools, such as sports and the arts.

 

The passage of such legislation has been controversial for various reasons, including expense. Starting with Colorado, 11 states have passed the 'Bill of Rights' law, and additional states have modified some of the suggested regulations. (The Individuals with Disabilities Education Act (IDEA), made law in 1990, only states the "IEP team [should] consider the language and communication needs, opportunities for direct communication with peers...." )

 

Kimberly McGuiness, parent, advocate, and Special Education Technology Specialist, worked tirelessly to facilitate the 'Bill of Rights' in Georgia. She has commented:

 

"Requiring a deaf child's Bill of Rights adds another layer to systems to protect and include when making important decisions in meeting the unique needs of a deaf or hard of hearing child. ...parents must remember it is our parental right to be a part of our children's educational careers and a 'partner' with the school system. Keep the lines of communication open, be involved, show up, participate, and educate yourself. One person cannot do everything and it is not one person's responsibility to do so, it is a team effort. The structure of disabilities when viewed vertically seems to place deafness as low prevalence and has for many years. When autism is added in the mix, it becomes even more low prevalence and adds a dual diagnosis. The Deaf Child's Bill of Rights aids in requiring educational facilities to provide a dual layer of check points to meet the unique needs of children living with deaf autism." ARI supports the efforts behind the bill and certainly the basic rights of any person for a valued and working communication system.  
iPad Applications 

 

iPads and other portable tabloids are being used in innovative ways in various settings. We would like to know about applications and ways to use them with students who are deaf/hard of hearing and even learning with visual impairments.

 

Let us know if you and/or someone you know uses a tabloid. You can send an email to us at:  HearingVisionNetwork@autism.com.  An upcoming issue of this e-newsletter will focus on tabloid applications.

CRAIG'S STORY CONTINUES

 

Dolores, Alan and Craig Bartel

 The Bartels would like to provide our readers with an update on Craig, whose life has inspired countless families and their children. Craig has autism and a profound hearing loss. He lives in a two-bedroom condo with several other roommates. One of his roommates is also deaf. The roommates communicate with one another and with the staff using sign language. Craig will also communicate by writing down or typing words.

 

Craig has a productive job where he works on various tasks. Once Craig has a clear understanding of the task, he needs minimal support from his job coach. However, staff members sometimes need to keep him on task and to help manage his time appropriately. Craig is very much appreciated at work; last year, he was awarded 'Employee of the Year.'  

 

Craig attends many social functions that are sponsored by local agencies supporting people with disabilities. He enjoys dancing and spending time with friends. Craig is also a very active person. He exercises on a bike and treadmill; he loves to bowl; and he sometimes competes in Winter Special Olympics. Craig enjoys eating out two to three times a week, and he visits his brother and nieces who live nearby.Sometimes Craig becomes upset when other people don't understand his needs or wants, or when he has trouble communicating. Fortunately, his support staff are sensitive to this issue, and they try to anticipate his needs. Overall, Craig is a very happy young man.

 

In our last issue, we discussed the pioneering efforts of Alan and Dolores Bartel who were instrumental in organizing a network throughout the autism community to connect parents of deaf and hard of hearing individuals as well as blind and visually impaired individuals with one another and with the professional community. Today they spend time with their grandchildren and enjoy many of their favorite activities, such as skiing. This is a recent photograph of Alan and Dolores with their son, Craig, enjoying a family ski holiday in Aspen, Colorado.

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