Answers to Frequently Asked Questions About NJCDB Census
What is the census of children who are deafblind?
New Jersey Consortium on Deafblindness (NJCDB) conducts an annual count of all New Jersey children from birth through age 21 who have both hearing and vision problems. This information is confidential, and only specific data is submitted to the federal government, such as the cause of deafblindness or the type of educational placement, not student or parent names, home addresses, etc. And although at first glance the census form may look daunting, it should only take a few minutes per student to complete.
Who should complete the form?
Ideally the census form should be completed by the “best service provider”, someone who knows and works closely with the child. However, anyone with access to the child’s file can complete the form, including educators, school health personnel, family members, and/or NJCDB staff.
What if we don’t have any deafblind students in our district/county/at this time?
While it is possible that smaller Local Education Agencies may not have any students with combined hearing and vision problems, statistically we know that there should be about one child who is deafblind for every 4,200 students in a school district. Another guide we use is that there are approximately two students who are deafblind for every 1,000 receiving special education services. NJCDB field staff is available to assist you in your identification efforts.
What if I don’t know all the information requested on the form for a particular student?
Please refer to the child’s cumulative file if possible and/or the IEP.
Does reporting a child on this census obligate our school program to provide services such as vision, hearing, orientation and mobility?
No. Individualized needs and services are determined by the family and educators through the IEP or IFSP process.
Why is the census so important?
The deafblind census is important for many reasons. Funding for specialized services to this population is dependent on having accurate information about how many infants, children and youth in New Jersey have both hearing and vision problems. When the state and national legislatures approve funding—and state and federal agencies allocate the funds—census information is used to determine priorities and needs.
What exactly is meant by the term “deafblind”?
NJCDB recognizes that this is a difficult question for families and educators, and that the federal definition can be confusing. To make it more clear, NJCDB uses a functional definition of deafblindness: If an individual (birth through age 21) has combined hearing and vision problems that are significant enough to require considerations (such as specialized adaptations, modifications, and strategies) when presenting information or interacting with the child, then that child is considered eligible to be included on the census and receive services from our project.
What if a child has multiple disabilities that happen to include vision and hearing problems?
Most children who are deafblind do have additional disabilities, including cognitive disabilities, orthopedic impairments, serious health impairments, etc. Please complete a census form for all students who have hearing and vision problems, regardless of the presence or absence of additional disabilities.
What if the hearing and/or vision problems are cortical in nature?
Please do include children with sensory impairments that are cortical in nature—such as cortical visual impairment or central auditory processing disorder—on the census. These students usually require adaptations and modifications to their programs in order for them to succeed. In addition, these hearing and vision problems often need to be considered when developing effective, formal communication systems for these individuals. When in doubt, refer to the functional definition of deafblindness above.
What if Deafblindness is not the student’s primary handicapping condition on her or his IEP?
It doesn’t matter which primary handicapping condition is identified on the IEP. While New Jersey Deafblind Services would like to see all students who have vision and hearing problems identified as deafblind on the IEP (and there are federal regulations regarding this issue), we know that most students who are deafblind are identified under other federal/state primary disability categories, such as “mental retardation”, “multi-disabled”, “hearing impaired”, “visually impaired”, “severely handicapped”, etc.
Does a child have to meet my agency’s criteria for vision and/or hearing impairment to be reported on this census?
No. Eligibility for vision and/or hearing impairment services varies from district to district, and definitions are interpreted in many different ways. For example, students with only a mild hearing loss and vision loss should be included in the deafblind census count since a combined mild loss of both senses can create an adverse effect on educational success. In addition, students who are deafblind do not have to meet state criteria since this census and the state count are separate entities (the state count being the number of students in New Jersey for whom deafblindness is marked on the IEP as their primary handicapping condition).
Why is a child’s etiology requested on the census?
Knowing a child’s etiology is important for a number of reasons. Maintaining this database allows NJCDB staff to make important connections between families. For example, parents of a child with CHARGE Syndrome might contact NJCDB to ask if there are other parents of children with the same syndrome in their area. The census allows NJCDB to make these family-to-family connections. Another important reason to know etiology is that the New Jersey census information is combined with data from around the country to determine which causes of deafblindness are on the increase or decrease, if there are geographic clusters of students with similar etiologies, etc.
What if I have a question that hasn’t been answered here?
Please call 609-771-3083