Sam is a 16-year-old boy with a diagnosis of Duchenne muscular dystrophy (DMD). He has attended the same secondary college since commencing in Year 7, which coincided with the time when the weakness in Sam’s leg muscles was such that a wheelchair became necessary.
As he has grown and his symptoms have progressed, Sam’s physical and emotional needs have become more complex and his ability to demonstrate his understanding of the curriculum has diminished.
Sam is in a powered wheelchair, which is large and makes access to some areas of the school difficult. He is developing increasingly severe scoliosis, due to the increased time spent in a wheelchair since the age of 12, and complications arising from deterioration in his respiratory muscles. Sam is undergoing corticosteroid therapy, a medication used to manage DMD and slow the progression of muscle weakness. As a result, he is experiencing the distressing side effects of weight gain, glucose intolerance and skin problems.
Sam’s personal care needs have also recently increased due to progressive muscle weakness. He is no longer able to self-transfer when using a universal access toilet and is becoming physically fatigued more quickly, leading to shortness of breath.
Recently, Sam’s medical specialist team advised that he should avoid using his hands for fine motor activities, as all his movements take significant effort and energy, and instead make greater use of mechanical devices. They also advised of the need for Sam to have regular breaks to focus on his respiratory care (eg through deep breathing and coughing). As a result of his physical deterioration, and the side effects of the powerful anti-inflammatory medications he is taking, Sam is experiencing psychological difficulties and low self-esteem.
Due to the recent rapid deterioration and the changing recommendations from Sam’s medical specialist team, an urgent Student Support Group (SSG) meeting was scheduled to review and plan for his educational needs and adjustments. In preparation for the meeting, the school’s Additional Needs Coordinator requested interim reports from all of his teachers regarding his progress, and liaised with Sam’s occupational therapist and speech pathologist, inviting them to attend the meeting or to provide written recommendations for the school to consider in planning for Sam.
With consent from Sam’s parents, the school welfare coordinator also liaised with Sam’s private clinical psychologist to discuss what school supports and strategies may assist in addressing Sam’s social–emotional needs.
The Student Support Group occurred the following week, with Sam and his mother attending, along with the school Principal, Additional Needs Coordinator, Year Level Coordinator, Welfare Coordinator, regional visiting teacher and hospital occupational therapist. A written summary report with recommendations was provided by the speech pathologist, who was unable to attend.
At the meeting, the following additional educational adjustments were identified in order to assist Sam in conserving energy throughout the school day and to do the things other students are engaging in within the educational setting:
- Sam would use tablet technology to replace pen and paper and other fine motor tasks for a significant amount of his educational program
- the speech pathologist and occupational therapist would assist the school in selecting the appropriate tablet, based on Sam’s access and educational needs
- Sam’s teachers and education support staff would be required to undertake professional development in the use of tablet technology in education
- the occupational therapist would educate school staff in how they can help Sam with everyday tasks to optimise his ability to remain independent in daily activities, for example, new ways to eat, play, and participate in other activities
- use of a special desk top
- a hoist would be fitted in the universal access toilet to enable better access for Sam
- key staff would be trained in the appropriate use of the hoist
- the availability of physical assistance, when necessary, for physical tasks
- ensuring that Sam can easily access papers, books, and other materials within the classroom, and that he’s able to use the wheelchair easily in the classroom
- allowing Sam to provide answers verbally due to decreased writing abilities
- Sam would be provided with access to the senior school common room for rest periods throughout the day when considered necessary
- key staff would be trained in wheelchair use and maintenance, and in the use of special devices to assist Sam with his respiratory care
- provision of physical education for Sam with adapted physical education specialist support 50 minutes weekly
- implementing rule modifications for physical education activities so that Sam is not out and not participating more often than he is participating (noting that he is not expected to participate in cardiovascular, strenuous or high level of activities due to his disability)
- the school Welfare Coordinator would continue to liaise with Sam’s psychologist to ensure appropriate and timely information could be provided to Sam’s school friends and staff to best support his social–emotional needs
- school staff would be provided with support as necessary, including access to the system Employee Assistance Program, to help staff cope with the emotional impact that the progression of Sam’s illness has had.
Another Student Support Group meeting was scheduled in six weeks to review the progress of the above adjustments and to discuss Sam’s progress. Sam would be invited to attend the meeting to provide feedback and raise any other suggestions for the group.