One of the biggest issues facing DeafBlind Projects all over the country is the under-reporting of children with DeafBlindness birth to three years on the states’ DeafBlind Census. This is a problem because the early years are so important in a child’s overall development. Young children with dual sensory impairment must begin receiving individualized services that will facilitate access to appropriate assessments, communication modes, assistive technology, and social-emotional development strategies specifically developed for them.
The internationally known expert on DeafBlindness, Jan van Dijk (1966), outlines two important propositions for the education of a DeafBlind child:
“The right educational program for each child with DeafBlindness never already exists but must be created. The program must be fitted to the child, not the child to the program.”
“Anyone responsible for designing and delivering a child’s (with DeafBlindness) educational program needs some familiarity with DeafBlindness …)”
Expert help is available to families and to teachers and therapists who have children with DeafBlindness on their caseloads from their state DeafBlind Project. Many clinicians and teachers in Early Intervention do not take advantage of this expertise. Why not?
Some barriers to referral include:
- Child Service Coordinators, who are the portals for all Early Intervention services, may not be aware of the services provided by the DeafBlind Project and their importance to children and families.
- Early Intervention staff may not know who can refer the child to the DeafBlind Census.
- Written requests using provided forms can be time-consuming and somewhat confusing since the questions are geared mainly toward school-age students.
- Early Intervention staff may not know when, during the year, they can add a child to the census.
- Since children with multiple disabilities may already have a large team of service providers, teachers may be reluctant to add one more.
- It may not be clear if a child qualifies as eligible for DeafBlind services. For example, vision issues for an infant with hearing loss may be suspected but take a while to be diagnosed.
- Issues of privacy rights. Can the team share information with the DeafBlind technical assistance consultant?
- Teachers may be hesitant to bring up the term ‘DeafBlind’ with parents who are newly coping with their child’s diagnosis.
Strategies for Overcoming Barriers
Anyone who has access to the child’s records including any of the child’s service providers, program administrators, the child’s parents, and medical providers can refer a child. It is not a problem if a child is referred twice. The NC DeafBlind Project staff will sort through the referrals and remove any duplicates.
A child with complex needs usually already has several service providers such as an OT, PT, SLP, O&M, etc. Adding another person may seem like too much! DeafBlind Technical Assistance Consultants do not work directly with the child. Help and support are individualized to the needs of teachers and other team members. The consultant will need to observe the child during his or her Early Intervention sessions, but she does not have to interact with the child or family during the session. Instead, she can meet with the child’s team afterward.
Teachers may have infants and toddlers on their caseloads who have been diagnosed with a vision or a hearing impairment but not with both. Most experienced teachers familiar with early childhood development can get a feeling for whether the child may also have hearing or vision loss. Many diagnoses greatly increase the chances that there are impairments to both distant sensory channels such as prematurity, certain genetic syndromes (CHARGE Syndrome, Down Syndrome, etc.), or traumatic injury or illness. Parents should be encouraged to have both their child’s vision and their hearing checked. While this is occurring, the child can be referred to the DeafBlind Census. There is a one-year grace period before ophthalmological and hearing assessments are required for eligibility.
Since it is critical for us, as educational consultants, to have access to information about the child, it’s helpful to have a release of information form for the ECU Teacher Support Program in the child’s file. This can be done in the same way you might add a form for Beginnings to share information with them.
Discussing the term DeafBlind can be a concern to parents because it brings to mind stories of Helen Keller and possible complete blindness and deafness. The Early Intervention provider can explain to parents that the DeafBlind Project is the name of the federally funded program but the children it serves have all degrees of combined hearing and vision loss. She can explain to parents that adding their child to the census guarantees that children who have both vision and hearing loss receive appropriate assessment, intervention, and a head start on their development.
In summary, DeafBlindness is a low-incidence disability. An Early Intervention provider may only serve a few children with DeafBlindness during their career and most teachers have not received specialized training in DeafBlindness. If you have a child with combined vision and hearing loss on your caseload, please contact us at the NC DeafBlind Project. We are here to help you!
Patty Dischinger, M.Ed.
Technical Assistance Consultant
East Carolina University DeafBlind Project Teacher Support Program
dischingerp19@ecu.edu