After working for the DeafBlind Project’s ECU teacher support program as the designated person for Early Intervention, I have come to find out that one of the biggest issues facing DeafBlind Projects all over the country is the under-reporting of children with DeafBlindness 0-3 on the states’ DeafBlind Census.
The graph below shows the percentage of children on our DeafBlind Census in North Carolina who are in the 0-2 range compared to the national average. The national average for the percentage of children on the DeafBlind Census between the ages of 0-2 is 6.7%, in North Carolina 3.7% are in this age bracket.
This is a problem because the early years are so important in a child’s overall development. The young child with dual sensory impairment must begin receiving individualized services that will guarantee access to appropriate assessments, communication modes, assistive technology, and social-emotional development strategies, specially developed for him or her. The DeafBlind Project also has a program for families that provides helpful workshops and connects families who have children with similar issues. Enrollment on the NC DeafBlind Census is a prerequisite to receiving these services.
These quotes from the internationally known expert on DeafBlindness, Jan van Dijk (1966), outline 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, but many clinicians and teachers in Early Intervention do not take advantage of this expertise, why not?
As a former Early Intervention teacher in the areas of hearing and vision, I can understand the problem from both sides. Here is a list of some of the issues around referral that I experienced and have heard about from other Early Intervention providers.
- 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.
- Filling out the NC DeafBlind Census report and the ECU Teacher Support Program request can be time-consuming and somewhat confusing since some of the questions are geared toward school-age students.
- Early Intervention staff may not know when during the year, they can put a child on the census.
- Children with multiple disabilities may already have a large team of service providers and teachers and service coordinators may be reluctant to add one more.
- It may be unclear at first 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 assistant?
- Teachers may be hesitant to bring up the term “DeafBlind” with parents who are newly coping with their child’s diagnoses.
I know from personal experience that Early Intervention Providers are very busy people. They do not need to have any unnecessary tasks added to their already full plates but getting appropriate specialized help for the children with DeafBlindness on their caseloads is important and the families of these children should be made aware that this specialized help is available for them and their child.
Hopefully, by taking the issues listed above one by one, we can try to remove some or all the barriers related to placing our infants and toddlers with both vision and hearing impairment on the DeafBlind Census and referring them to the ECU Teacher Support Program for Learners with DeafBlindness.
- To help with the issue of Child Service Coordinators not being familiar with DeafBlind Services, we have developed a PPT for CDSA staff emphasizing the importance of this specialized help for infants or toddlers with DeafBlindness. We have delivered this presentation at staff meetings for 10 of the CDSAs reaching over 200 child service coordinators. Information on the DeafBlind Project along with a copy of the PPT was sent to the remaining 6 CDSAs.
- As to the question of who can refer a child on the DeafBlind census, the answer is anyone who has access to the child’s records including any of the child’s service providers, program administrators, service coordinators, the child’s parents and medical providers! 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.
- Filling out the DeafBlind Census Form can be time-consuming. The NC ELSSP staff is very fortunate to have Heather Lister who has volunteered to fill out the referral form for any child in the Early Learning Sensory Support Program who has both a hearing and a vision impairment. We have also revised the ECU Teacher Support Program referral form to make it easier for teachers to fill out. The link to this Qualtrics form is: https://ecu.az1.qualtrics.com/jfe/form/SV_7TY9q3ieIRjdLxj Some of the questions on the form are for school-age children, not to worry, just fill out as much of the form as you can and we can get back to you for any other information we need.
- Since there is a time when the new DeafBlind Census for the year comes out, usually sometime in February, teachers may be confused about when they can refer a child. A child can be referred any time during the year by contacting Heather Lister. She can help you get your student listed on the NC DeafBlind Census.
- Heather Lister: heather.lister@dpi.nc.gov
- 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! However, impairment of both distance senses is going to be a major barrier to a child’s ability to access his or her world and to learn to interact with people and objects in his or her environment. DeafBlind Technical Assistance Consultants do not work directly with the child. Help and support are individualized to the teachers’ needs. 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. My experience has been that teachers have commented that the brainstorming we have done after the session has been very helpful. So far, I have had very positive reactions from parents to my being included.
- 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 distance senses such as prematurity, certain genetic syndromes (CHARGE Syndrome, Down Syndrome, etc.), 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.
- Teachers I have worked with have asked me about issues of privacy rights. Since the ECU Teacher Support Program technical consultants need to have access to information about the child, it would be a good idea to have a release of information form for the ECU Teacher Support Program signed by the parents in the child’s file. This can be done in the same way you might add a form for Beginnings for example to share information with them.
- The term DeafBlind may be a scary one for parents. This is a concern because it brings to mind stories of Helen Keller and parents thinking about a child who is completely blind and deaf. The Early Intervention provider can explain to a parent 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. Explain to parents that putting their child on the census guarantees that children who have both vision and hearing loss get the appropriate assessment, intervention and a head start on their development. We would be happy to provide you with a brochure for the parents to read.
In summary, DeafBlindness is a low-incidence disability. An Early Intervention provider may only have a few children with DeafBlindness on their caseloads during their career and most teachers have not received special training in DeafBlindness. When I had my first student with DeafBlindness in a preschool classroom many years ago, it was quickly evident to me that I needed guidance to help this little girl reach her potential. A teacher from the DeafBlind Classroom at the Eastern North Carolina School the Deaf came and spent some time in my classroom and it made all the difference. It was one of the greatest moments in my career when this student went to her schedule box, took out her cup, and put it on the table (actually threw it on the table) to let me know she wanted a drink. This could only have happened through months of consistent input of object cues at home and school.
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.
East Carolina University DeafBlind Project Teacher Support Program
Technical Assistance Consultant