Access to Information

For a student who is deafblind, the combined effects of the vision and hearing loss create a barrier that significantly impedes the ability to gather information from the environment. This can lead to a lack of access to incidental learning and delayed or fragmented concept development. Students cannot learn what they do not detect, and they may be unaware of what they are missing. Similarly, developing auditory skills is critical in order for these students to be safe in and able to navigate and learn from their environment. Determining the best approach for maximizing audition for students who are deafblind will require a team approach and possibly even looking at these skills from a new perspective. Access to information is a primary issue for all students who are deafblind, and should be addressed in each IEP. The effects of deafblindness should be taken into account in assessments, evaluations and delivery of all related services provided to the student.

Assessments

Skill, patience and teamwork are all required to meaningfully assess students who are deafblind. Two areas with which the teacher of the deaf and hard of hearing is very familiar show this concept clearly. The audiological report not only includes a description of the implications of hearing loss in a variety of settings with or without amplification, but also addresses the student’s vision loss in the following areas:

For communication during O&M instruction and during interaction with others during travel in various types of lighting conditions (twilight, with artificial light, bright sunlight, in glare) determine:

• • • Appropriate distance and placement for receptive fingerspelling and signing.
    • Appropriate pacing for receptive fingerspelling and signing, 
    • Appropriate access to tactile signing and fingerspelling, hand tracking, and co-active signing if necessary, and/or
    • Appropriate distance for speech reading. 
    • Ability to identify speaker or sound source at both near and distance in all types of lighting and in varying sound environments which is critical to identifying landmarks, cues, and signals and evaluating traffic noise;
    • Ability to localize sound source with or without amplification for orientation and mobility at both near and distance in all types of lighting; and
    • Ability to see a referent under discussion at both near and distance in all types of lighting.

Note: To properly assess this the TDHH should collaborate with the TVI and/or COMS. You may want to reference the Assessment of Deafblind Access to Manual Language Systems (ADAMLS).

Teaming

Due to the complexity of needs of students who are deafblind continuous input from a core group is often needed to guide daily programming. The function of the core team is to review, refine, and direct on-going educational programming and may include those who interact with the student (e.g. parent, intervener, classroom teacher, teacher of students who are deafblind, teacher of students with visual impairment, teacher of the deaf and hard of hearing) daily and weekly. The core team should meet regularly (weekly, bi-weekly, monthly or quarterly) based on the student’s needs. An extended team may meet with the core team when expertise is needed in specialized therapy areas (e.g. PT, OT, O&M).

In regards to orientation and mobility instruction, all staff should be guided to communicate with the COMS. It is the COMS who will determine priority skills and share strategies for things like sighted guide, travel within the classroom and outside the classroom, the use of trailing, pre-cane and travel canes, how to help the student tune into landmarks, cues, and clues, sound identification and localization. They can also train the team on the use of proper techniques to support independent travel. 

Communication

A combined vision and hearing loss can profoundly impact the development of both receptive and expressive communication. A lack of informal and/or formal communication creates a barrier affecting all areas of learning. Many students who are deafblind encounter a lack of access to engagement with potential communication partners without support from someone (e.g. intervener, interpreter, teacher of students who are deafblind) who can bridge the divide between the student’s unique communication system and the communication systems of verbal or signing speakers. Without this support the student is cut off from accessing both instruction and conversational interactions that are key to learning.

During O&M instruction, the student is likely to require the support of an intervener or other qualified communication partner if the COMS is not trained in the child’s individual communication system. Even if the COMS is able to communicate, it is important that they understand how to check that communication devices and amplification are working properly. The student may also need some type of communication system for engaging with the public while traveling in the community. This might take the form of a print booklet with braille or tactile symbols attached or the use of assistive technology.

Etiology

There are a number of syndromes that result in both a vision and hearing loss and may have bearing on the best educational approaches to use with the student. For example, the concept development of a student with CHARGE Syndrome may be affected by their experience of numerous early hospitalizations. They may also experience problems with balance. A student with Usher Syndrome, may appear to see very well until it is dark or as they move from dark to light environments. They may also have balance problems. 

Understanding and helping to educate the team on any impact of the child’s etiology that may impact travel is important.

Behavior

For students who are deafblind, issues of challenging behavior are usually closely tied to sensory access and communication. Behavior is often the result of coping with situations that seem confusing or threatening due to lack of information available from others or from the environment. It can also be the result of frustration from lack of access to partners skilled in responding to the student’s methods of communication. This  can create barriers in recognition, trust, and bonding between students and caregivers which can have an impact on behavior. Additionally, behaviors may result from the student’s need to stimulate or regulate sensory input, or they may be in response to pain associated with medical conditions like glaucoma or ear infections.

It is important to understand the root cause of any distress that may be labeled as “behavioral challenges” and develop strategies to address them. Travel outside of very familiar environments or if the child does not feel safe may trigger some of this type of distress. Helping the team know how to communicate with the child when they are distressed and how to prepare the child for potentially stressful travel situations is important. 

Social Issues

Deafblindness can impact the ability to form relationships and respond to interactions with others in typical ways. For example, a lack of environmental information makes it difficult to identify people, locate them, know what they are doing, or understand what they want. Many ordinary interactions may seem threatening, negative, or confusing to the student. In turn, the student’s need to gather information by close viewing and/or touch can offend others. It is not unusual to see withdrawal and problems with bonding. It is important to consider that social problems for a student who is deafblind are often the result of an on-going lack of essential information. The psychological impact of changes in vision and hearing experienced by a student who is deafblind may need to be addressed in the IEP.

Because travel in the community is an important part of orientation and mobility instruction, the team may need to provide specific instruction related to situations like meeting strangers, appropriate personal space, and stranger danger. Not all children will become skilled enough to travel independently, but all of them will interact with the public throughout their lives. Addressing critical personal interaction skills is very important for all students who are deafblind.

Orientation and Mobility (O&M)

Deafblindness affects the ability of students to know where they are, and how to go from place to place. Certified orientation and mobility specialists (COMS) will find that working with this population may require some changes in instructional approaches. Students who are deafblind receive less information from the environment, which may impact their motivation to explore. Deafblindness affects the identification and use of sound cues. Students need more orientation to environments, and strategies to gather information about their surroundings.

As the TDHH, if you are working with a student who is not receiving orientation and mobility instruction, you may need to talk to your team about requesting assessment in this area. Additionally, you may recognize situations that are causing problems for the student that others are not aware might be occurring. You need to make note of this and share it with the team as part of informal assessment.

Transition Planning

The need for experientially based vocational assessment and instruction in real-world environments is heightened when sensory issues affect access to environmental information and practical experience. The ability to initiate and sustain meaningful leisure activities is impacted by the capacity to learn through modeling and gather environmental cues. Being an effective self-advocate about communication and access to information is essential for success in higher education, employment, and other community settings. Additionally, referrals to community services designed for people who are  deafblind lead to better adult outcomes (e.g. community intervener, support service provider, interpreter, specialized residential and vocational support) lead to better adult outcomes.

One major support for many young people who are deafblind, is helping them to find community after they leave school. As the TDHH you may have access to various deaf-related supports and resources that others on the team do not have such as adult deaf clubs and organizations, special Medicaid waiver programs for deafblind that might help pay for an intervener during travel, and likely employment resources.