If a child has moved or transferred to another program or district, please let us know so we can still include him/her on the Deafblind Child Count. We greatly appreciate your time in connecting children, families, and teams with NEC!
If you have the information necessary to complete the form, please report a child using the NEC FORMAL Registration Form and obtain NEC parent releases. If you do not have the information necessary or do not feel comfortable providing that information to NEC, but know of a child whom you feel should be reported, please contact NEC directly. We will review strategies to support the team and family, without directly identifying the child or family.
Yes. When needed, NEC uses an INITIAL Child Referral Form – which includes ONLY the child’s initials, date of birth, etiology and degree of vision and hearing loss. Identifying information relative to the child’s full name, parent names or address is not required. Each year NEC will contact the service provider who completed the form and inquire whether a more formal referral is warranted.
The family, team, educator and related service providers working with a child who has combined vision and hearing loss may receive services by registering with NEC and completing parent release forms and a Technical Assistance Request form. Vision and hearing evaluations or functional reports are also required in order to determine eligibility.
Yes. He or she can be removed from the registry at any time depending on the results of future assessment.
Yes. A conclusion that a student is functionally deafblind may be based upon an educational evaluation for purposes of initially reporting that student to the NEC.
Individuals who are deafblind are often not totally blind and/or totally deaf. There is wide variability in the degrees of vision and hearing loss. Losses may range from mild to severe, may present as functional loss, or reflect a progressive condition. A person with any of these issues may be considered deafblind.
Yes. You should count children in all of the areas for which they qualify, including: counting them as multidisabled on the school count, counting them on the deafblind registry, and counting them on the APH count as a student who is blind.
Yes. A child with multiple disabilities who also has vision and hearing loss or functions as if he or she has combined vision and hearing loss should be reported.
Yes. A child with a degenerative condition or progressive loss should be reported to the registry. A good example of this would be a child with Usher Syndrome who is profoundly deaf and then may experience a progressive loss of vision due to Retinitis Pigmentosa. This child at 10 years old may have little or no difficulty with vision, but by the age of 13 may experience difficulties with night and peripheral vision. Children with progressive conditions should be reported as early as possible.
Yes. Any combination of documented hearing and vision loss, ranging from mild to severe and low vision to totally blind, should be reported.
Any child, birth through 21 years of age, who has combined vision and hearing loss, including those with additional disabilities, should be reported.
By reporting a child to NEC’s Deafblind Registry, teachers, related service providers, the child, and his or her family are eligible for services from NEC - free of charge. Historically, Teachers of the Visually Impaired and Orientation and Mobility Instructors have been instrumental in referring children to the NEC Deafblind Registry and often attend NEC trainings and networking events.
The National Deafblind Registry is used to supplement the Office of Special Education Program's federal Child Count, which only includes children as deafblind when deafblindness is their sole disability. Since the majority of children with deafblindness do have additional disabilities, more detailed information is required. Therefore, NCDB collects additional information for all children with combined vision and hearing loss, including those with additional disabilities. The National Deafblind Registry represents the longest running, and most comprehensive registry of infants, toddlers, children, and young adults who have combined vision and hearing loss.
NEC is responsible for compiling a variety of information on children within the state who have combined vision and hearing loss and forwarding it to the National Center on DeafBlindness (NCDB) for the federal deafblind registry.
The New England Consortium (NEC) is a federally-funded grant designed to improve the quality of educational services available to children and youth with combined vision and hearing loss (deafblindness), in the states of Connecticut, Maine, Massachusetts & New Hampshire. NEC consultation and training emphasizes the use of evidenced-based practices related to instruction and assessment, and targets key topics related to vision, hearing, communication, early/later transitions, and parent self-advocacy. The NEC regional office is located on the campus of Perkins School for the Blind campus in Watertown, Massachusetts.