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from Spring 97 issue
by Kate Moss, Family Support Specialist, TSBVI Deafblind Outreach
The 1997 Deafblind Census has just been completed in Texas and the information sent on to Dr. Vic Baldwin at NTAC for compilation in the Federal Deafblind Census. Dr. Roseanna Davidson and her staff at Project Access (located at Texas Tech University in Lubbock) compile this information each year.
The information that is provided through the census is always very helpful to us here at Deafblind Outreach. For example, the 1995 and 1996 Texas census showed an amazingly low number of school-aged children with Usher Syndrome. On the 1995-96 count there were 4,830 children labeled as deaf or hearing impaired in the state of Texas (CADS, 1996). Comparing the deafblind census numbers to statistics that suggest that "3-6% of all deaf children and perhaps an equal number of hard-of-hearing children have Usher Syndrome" (Davenport, 1996), we can project that there should be approximately 145-290 children with Usher Syndrome in Texas. We had only identified 15 of these children in 1996 and only 19 on the 1997 deafblind census. This has led us to focus more of our training efforts on the topic of Usher Syndrome.
The information provided by Project Access will also be a great help to the Education Service Centers, teachers of the visually impaired, teachers of the deaf and hearing impaired, local school districts, Early Childhood Intervention programs, and others. We hope that they will use this information when they develop Regional Plans, inservice programs for staff, and think about future funding issues. Hopefully, adult human service providers will also be able to use this information to make sure there are enough resources in various parts of the state for each of these individuals when they leave the educational system.
Sometimes parents don't understand why their child is on the Texas Deafblind Census when they are not coded auditorily impaired or visually impaired for state purposes. The reason this might occur is because the Federal definition for deafblindness recognizes that even mild vision and hearing losses in combination are significant in the child's educational progress. Programs for the child with primarily visual impairments or deafness have eligibility based on more significant vision and hearing loss. Typically the children who have more minor, singular sensory losses will not need the type of specialized programming provided by a vision teacher or a teacher of the deaf and hearing impaired.
There is a variety of information that is collected on the census form for each child. The major sections of the census form are:
Identifying information for eligible child or youth which includes their name, date of birth, gender, school district, campus, region, parents name, address, and telephone number.
Etiology (major cause of sensory impairment) which includes information on syndromes, congenital anomalies, prematurity, congenital infections, postnatal causes, or other causes of sensory impairments.
Degree of loss for vision and hearing and a listing of additional disabilities.
Funding source and handicapping condition which includes information on where specific disability funds for the child are generated.
Instructional and living arrangements for the child.
The first step in filling out the census is to complete the Checklist for Deafblind Census of Texas. This checklist includes three areas: Hearing, Vision and Developmental Concerns that would lead to coding the child deafblind for the Census. (go to Checklist)
Under the "Hearing" and "Vision" section of this checklist there are two subsections. One subsection (items #1-6) addresses documented vision or hearing impairments. By "documented" we mean visual or auditory conditions that have been diagnosed by a professional in the field of vision or hearing (an audiologist, ophthalmologist, speech/language pathologist, etc.).
The other subsection is the "At risk" items (#7-11 under the hearing and #7-13 under the vision). Frequently children with these "at risk" issues may be untested or have nonclusive testing initially. This may occur because the child has been too ill to test or to get good test results or because the concerns are so recent that testing could not be scheduled before the census form had to be submitted. Additionally , in very young children, under the age of 5 years old, it sometimes takes a long time to get good testing results. The best that can be done, for the time being, is for the vision and hearing professionals to make a judgement call based on the best information they can obtain.
Another of the other trends we see in Texas when we look at the census figures is that many children are listed as having incomplete or nonconclusive testing done in the areas of vision and hearing loss year after year. One of our goals is to improve assessment in these areas.
Every effort should be made to get appropriate testing results as soon as possible for a child at risk for hearing or vision loss. Without this information, appropriate programming may not be provided to the child. If you don't know how the child uses his vision or hearing, how can you be sure he is getting anything out of his instruction? You also don't want to overlook possible adaptations that could help the child or make adaptations that could be detrimental to the child.
The Deafblind Outreach staff are very interested in reducing the number of children on the census who have "Tested - Inconclusive Results" or "Not Tested" checked under the vision and hearing loss data. We are currently compiling a packet of information to help schools achieve better testing results in hearing and vision areas on the hard-to-test child. We are also available to work with schools to help them obtain better testing results and information.
Go to 1997 Texas Deafblind Census
Davenport, S. 1996. Usher syndrome. NIDCD HHIRR, Omaha, NE.
Deafblind Census of Texas: Results 1997, April 1997. Project Access, Texas Tech University, Lubbock, TX.
1995-1996 Final Report Texas State Survey Deaf and hard of Hearing Students, August 1996. Center for Assessment & Demographic Studies, Gallaudet Research Institute, Gallaudet University, Washington , D.C.
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from Spring 97 issue