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School Years

A Lesson in Education
Sheri Stanger wrote about the frustrations parents experience with the education system and provides suggestions and resources in an issue of CHARGE Accounts Spring 2012

Deafblind: an important educational term
“Deafblind” does NOT mean total deafness or total blindness, but rather a combination of hearing and vision loss. There are often very specific educational resources available to children with deafblindness through your state’s deafblind project. Although most children with CHARGE have some residual hearing and/or vision, the majority can be designated “deafblind” since they have combined hearing and vision loss. It is important for families and educators to understand that “deafblind” does not mean total hearing loss or total vision loss.

Read More About Deafblindness Defined

Deafblindness Defined

The Individuals with Disabilities Education Act (IDEA) defines deafblindness as “concomitant [simultaneous] hearing and visual impairments, the combination of which causes such severe communication and other developmental and educational needs that they cannot be accommodated in special education programs solely for children with deafness or children with blindness.” Students with Deaf-blindness make up less than 1% of all students with a disability served under IDEA.



Teaching Strategies for Children with CHARGE Syndrome
Sharon Stelzer, a long-time teacher in the Perkins Deafblind Program, discusses teaching students with CHARGE Syndrome and implementation strategies needed to help teachers create a positive learning environment. She emphasizes the need to establish schedules and structure while enabling students to make choices. Stelzer also talks about the benefits of learning how to negotiate with students with CHARGE Syndrome

Accurate assessment is the key to effective therapy, appropriate school placement and IEP goals, as well as planning for life after graduation. Most assessment tools, however, do not take into account deafblindness or the other complexities of CHARGE syndrome. In our theme month on assessments, experts in the field address questions and share strategies related to assessment from early intervention through adulthood.

Education Professional Packet
Our Education professional packet contains valuable information to share with your child’s education team, including articles on welcoming a child with CHARGE into the classroom, the Educational Needs of Children with CHARGE syndrome, behavior, and therapies
Education Professional Packet

Understanding My Team. The Roles and Responsibilities of the Team Members
Understanding the roles and responsibilities of the team members is critical for good collaboration because parents can know what to expect and ask from each team member. This session from the 2011 International CHARGE Syndrome Foundation Conference describes the collective roles and responsibilities of all the team members and of each member individually. These include: parent, classroom teacher, the intervener or one-to-one aide, teacher for students who are visually impaired, teacher for students who are deaf and hard of hearing, the orientation and mobility specialist, the deaf-blind consultant, speech and language therapist, occupational therapist, physical therapist, and school psychologist. In English and Spanish.
2011 Conference Handouts
Friday Session #2 (English) and #3 (Spanish)

Information about developing an education plan that addresses a child’s unique learning needs was presented at the 2007 International CHARGE Syndrome Foundation Conference session A Wholistic Approach to Developing Education Plans, including a discussion of what team members need to know.
2007 Charge Conference Book
[Friday breakout session #8]

Taking Back the IEP and Making It Work for Our Kids
Often school districts write IEPs in a vague format left up to interpretation. Ellen Steinbrick, mom to Alex, shared her experiences in a session at the 10th International CHARGE Syndrome Conference in order to help parents prepare for IEP meetings and understand the information districts put in the IEP and what they leave out.
2011 Conference Handouts
Saturday Session #5

Promoting Early Concept Development through Adapted Books 
Conference 2015 Handouts
 [session #26] Commercially available books and other literacy materials are often conceptually inappropriate or confusing for children with dual sensory losses. Adapted books are a powerful and fun tool to help children develop accurate concepts about their specific environment based on their specific level of concept development, mode of communication, and sensory input preferences.

The Impact of CHARGE on Communication and Learning
Martha Majors provides insights on the impact of medical and physical challenges for children in educational environments. She also provides guidance for educators to help them develop an effective educational program that helps improve the emotional wellbeing and success in school for students with CHARGE

Educating Children with CHARGE Syndrome in Local Schools
There is a widespread and growing myth that children with CHARGE cannot be educated successfully in the local school system. While it is true that these students might need some very particular adaptations and approaches, there are no obstacles that cannot be overcome if the district is prepared to be flexible, creative, open to innovative ways of evaluating and teaching, and prepared to collaborate fully with everyone involved with the student.
2011 Conference Handouts [Saturday session #8]

Some families choose homeschooling to meet their child’s unique needs 2007 Charge Conference Book
[FRIDAY breakout session #4]

Common Acronyms in Education
Common Acronyms in Education

See our prior conference page  for handouts on these topics and many others.

The Education Team

Education teams can be a family’s greatest asset when children are ready for school. From Early Intervention to preschool to elementary school and beyond, the best team works as a guide and partner for the challenges of helping our children with CHARGE syndrome be the best they can be.
Learn more about The Education Team


In addition to multiple medical doctors, a child with CHARGE will likely see a number of therapists to help with skills that come naturally to other children. These therapies are available in the education setting and privately.
Learn more about Therapies