• Architectural barriers
• Curricular and instructional barriers
• Assistive Technology
• SETT Framework

Because of the architectural barriers prevalent in many communities, schools may provide one of the few opportunities that children with neuromuscular disorders have to interact with peers or adults outside of the home. However, to enable social opportunities for children with neuromuscular disorders within the school setting, it is often necessary to modify and adapt the school environment to make it accessible and safe for these children. Modifying the environment may include changing the physical layout and physical structure of the school in addition to providing special adaptive equipment.

In order to participate in class, students with neuromuscular disorders require that schools have facilities and equipment that they may access. Although schools often meet many of the needs for environmental adjustments, it is still common for these students to experience architectural barriers to accessibility created by a lack of ramps, elevators, and automatic doors. The need for such environmental changes becomes increasingly important as muscles weaken and heavy doors, steps, and long distances all become obstacles. For the older child, environmental adjustments are more likely to go unmet. Typically, in later years children are more likely to have several different teachers who use different classrooms depending on the subject taught. This may result in having to transfer to a different floor or different building and needing to carry books and/or personal equipment that was previously maintained in a single classroom. Utilizing a wheelchair results in additional considerations, such as whether doorways are wide enough, desks and fountains are at wheelchair level, and privacy is provided for toileting needs. Teachers should be aware of these needs and how the appropriate adaptations may be made, so that the child’s educational experience is as comfortable as possible.

Because a child with a progressive neuromuscular disorder has decreasing control of physical abilities, it is important that the child be provided with as much choice and control in accessing the environment as is feasible. Ultimately, the child’s ability to manage as independently as possible is the goal. However, environmental changes should be made that least compromise typical school experiences.

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Numerous barriers are related to how activities are organized and conducted within the school. Students often have difficulties performing particular school activities in the manner expected, resulting in restricted participation or exclusion from some class and outdoor activities. However, these students can usually accomplish these activities, but not as quickly or with the same approach. In order to accommodate these students, rules concerning how to perform the activity (including the location, pace, and time-frame) must be altered. The literature abounds with information and ideas on curricular and instructional modification techniques and accommodation strategies. This information should be sought out and consulted in order to provide an optimal learning environment for these children.

In general, the nature of the disorder, including the disease process, the symptoms, and it’s progression need be understood in order to determine how to facilitate the performance of these students and how to evaluate them. It is essential that teacher’s are aware that accommodations are being made for increasing impairment as opposed to improvement in most areas. Being able to identify and understand each child’s functional abilities and limitations is important to successfully accommodate the child. Finally, concerns over liability issues associated with involving children with disabilities in classroom activities should be addressed, including safety considerations in the classroom, in the playground, in physical education classes, and on fieldtrips.

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Assistive technology refers to any device or product that improves a person’s ability to function or reduces a barrier within their environment. This may include environmental adaptations as well as adaptive equipment. Assistive technology plays an important role in the lives of students with neuromuscular disorders. It provides the means to partake in activities that offer the opportunity to learn and develop life skills. It allows students to assume greater control and participate more actively in their day-to-day activities, thereby having a positive impact on their sense of competency, adaptability, self-esteem, and quality of life.

Assistive technology enables children with neuromuscular disorders to maintain some measure of mobility and independence at school. One example of an assistive device is the use of a wheelchair. Many children use a manual wheelchair when walking is no longer efficient, and as the disease progresses a motorized wheelchair may be required. Computer technology is another example of an assistive device frequently used in the school environment. Computer technology may enable children to engage and keep up with their schoolwork. For example, a laptop or mini keyboard may be more easily accessed, or an alternative input device may be used instead of a standard keyboard. Examples of alternative input devices include voice-activated word processors for writing and dictation, word processors with scanning devices, word processors with word choices or a word recognition program that allows you to pick up a word from a list based on the first few letters instead of typing the whole word, and onscreen keyboards. There are various kinds of switches that permit access to the screen without using a keyboard. Examples of commonly used switches include switches for those with arm, elbow, foot, or knee control, head or chin pointers, buttons switches of differing sensitivities, sound-activated switches, pillow-switches (activated by facial movement), sip-and-puff switches (controlled by voluntary inhaling and exhaling), and eyeglass switches (activated by purposeful eye movement). Also, for those with coordination difficulties, a joystick, touch pad, or fingertip controls may be used rather than a track ball or mouse. Basically, users can operate a variety of communication devices and software with virtually any aspect of their body and with any body movement. Modified keyboards may also help students decrease typing errors and increase productivity. Examples of modified keyboards include larger keys or permanent large-print key labels, and overlays (plastic fit over the regular keyboard with holes punched out so that each standard key can be pressed if chosen intentionally).

As neuromuscular disorders are progressive, the need for assistive devices will increase with time. Assistive technology decisions must match the users’ individual access needs and be optimized for their particular ability level. The compatibility of technology, student, and environment, which influences the acceptance and continued use of this technology, must be recognized.

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The SETT framework may be helpful in gathering and organizing data that may be used to make adequate assistive technology decisions. When determining what assistive technology to employ, the Student, the Environments, and the Tasks required for active participation in the activities of the environment must be considered, prior to selecting the Tools needed for the student to address the tasks. By ensuring that assistive technology is designed to support the student in accomplishing those tasks important to the student, within a given environment, the frequent underutilization and abandonment of assistive technology devices may be prevented. Furthermore, by focusing on the SETT framework teachers supporting the student may see the relevancy of the technology, and thus, may be more active and persistent in encouraging and supporting the student’s achievement through its use.

Below is an outline of questions to consider within each area of the SETT framework:

The Student (S):

• What does the student need to do?
• What are the student’s special needs and current abilities?

The Environments (E):

• What are the instructional and physical arrangements? Are there special concerns?
• What materials and equipment are currently available in the environments?
• What supports are available to the student and the people working with the student on a daily basis?
• How are the attitudes and expectations of the people in the environment likely to affect the student’s performance?

The Tasks (T):

• What activities take place in the environment?
• What activities support the student’s curriculum?
• What are the critical elements of the activities?
• How might the activities be modified to accommodate the student’s special needs?
• How might technology support the student’s active participation in those activities?

The Tools (T):

• What options should be considered for inclusion in an assistive technology system for a student with these needs and abilities doing these tasks in these environments?
• What strategies might be used to invite increased student perfomance?
• How might the student try out the proposed system of tools in the customary environments in which they will be used?

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