Victory in the Battle against Documentation Linked to Angelman Syndrome
In the heart of a loving family, 12-year-old Juliana, diagnosed with Angelman Syndrome (AS), is thriving. The family has developed an effective system to manage the abundance of documents related to Juliana's special needs, making life a little easier.
Juliana's paperwork includes a wealth of information, such as evaluations, Individualized Education Programs (IEPs), and progress reports. To keep track of it all, the family has a dedicated file drawer, meticulously organised to ensure quick access to necessary paperwork.
The family's system has proven beneficial in managing Juliana's care. They find relief in having easy access to her paperwork, and the process of obtaining support and equipment from the Angelman Syndrome Foundation has been facilitated by their organised documentation.
A file for resources is included in Juliana's paperwork system, providing the family with valuable information about AS and resources related to her special needs. Last year, the Foundation provided Juliana with an iPad, serving as her augmentative and alternative communication (AAC) device.
The family prefers to keep Juliana's paperwork in physical format instead of scanning and filing digitally. They find this approach more manageable, avoiding being overwhelmed by paperwork. However, they have developed a system to manage these documents for easier access during service applications.
The process of scanning all information into digital format is perceived as time-consuming, but the family is getting ready for middle school and will soon start purging files from when Juliana first started school. They will maintain a section for resources related to Juliana's special needs and continue to update it as necessary.
The Angelman Syndrome Foundation offers annual support and equipment to families living with AS, and Marta Figueiredo recently received an electronic file organization software for parents of children with AS. The Foundation encourages readers to sign up for their newsletter to stay updated on the latest news and resources.
Moreover, a low-cost test has been developed to screen for chromosome 15 disorders like AS, offering hope for early detection and intervention.
The family's story serves as an example of how organisation can make a significant difference in managing the challenges of living with a child with AS. Their resilience and dedication to providing the best care for Juliana is truly inspiring.
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