Portions of our registry, such as the cause of deafblindness and the type of educational placement, are annually submitted to the federal government. Students’ and parents’ names, addresses, and other identifying information are not provided to the federal government.
Funding for specialized services to this population is dependent on having accurate information about the number of infants, children, and youth in Iowa who 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.
Why refer a child to Iowa’s Deafblind Registry?
- So that the child’s parents, educators, and service providers can be notified of resources and training opportunities relevant to deafblindness.
- So that the child’s parents, educators, and service providers have free access to Iowa’s Deafblind Technical Assistance Team (DTAT).
- So that Iowa can meet its federal responsibility to maintain a census of the number of children and youth in the state who are deafblind.
Who should complete the referral form?
Ideally, the registry referral form should be completed by the educational team member who knows and works closely with the child. However, anyone with access to the child’s file can complete the form, including:
- School Health Personnel
- Family Members
- Iowa Deafblind Services Project staff
What if I don’t know all the information requested on the referral form?
Please refer to the child’s cumulative file and/or the IEP. Or, contact Katy Ring, Project Coordinator, for assistance at firstname.lastname@example.org or via phone (712) 310-4623.
What if a child has multiple disabilities that happen to include vision and hearing problems?
Most children who are deafblind 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.
Does reporting a child on the deafblind registry 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.
What if deafblindness (DB) is not listed as a disability code on the child’s IEP?
Students who are deafblind for purposes of this registry do not need to meet any state IEP criteria; the deafblind census and the state count are separate entities. In Iowa, all IEPs list the primary disability as “Eligible Individual” (EI). Secondary and tertiary disability codes are available for use on the IEP, one of which is code for deafblindness (DB). Inclusion of this DB disability code on a student’s IEP is encouraged when appropriate, as it is helpful for obtaining aggregated information about this population, such as the performance of Iowa’s children who are deafblind on state achievement tests. However, it is not mandatory for purposes of being included in Iowa’s Deafblind Registry.
Why is a child’s etiology requested on the registry?
Knowing a child’s etiology is important for a number of reasons. Maintaining this database allows Iowa Deafblind Services Project staff to plan etiology-based training and make important connections between families. For example, parents of a child with CHARGE Syndrome might contact us to ask if there are other parents of children with the same syndrome in their area. The census allows us to make these family-to-family connections. Another important reason to know etiology is that the Iowa 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.
Once placed in the registry, can a child’s name be removed?
Yes. If for example, a child no longer qualifies as being “deafblind” or moves out of state, s/he can be removed from Iowa’s Deafblind Registry at any time.
Please contact us if you still have other questions.