Educating the severely disabled medically complex child

Grassmyer, Cassie

Grassmyer, C. (2024). Educating the severely disabled medically complex child: A case study on parent perspectives.

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Title	Educating the severely disabled medically complex child
Abstract	This study examines the perspectives of parents who have children with severe and profound disabilities and medically complex conditions. Children have the right to a free and appropriate public education. However, when faced with extremely significant physical, cognitive, and medical deficits, quality of life plays a central role in determining the least restrictive environment for their education to take place. In this qualitative single case study research design, parent participants were interviewed to gain their perspective based on the conceptual framework that incorporates school options, barriers and resources, parent support, and quality of life. Data from interview transcripts were coded leveraging thematic analysis. Four major themes were found, and conclusions were developed by weaving evidence from the interviews and literature. Results revealed the importance of education, the importance of quality of life, giving the child what he or she needs, and finding the support needed to raise a child with severe and profound disabilities and medically complex conditions. These findings indicate that all stakeholders play a positive role in fostering more inclusive and equitable educational practices. This includes supporting educational programs, ensuring access to specialized schools or medical care, promoting social opportunities, advocating for vulnerable students, and acting with empathy, thereby shaping the policies and frameworks that guide special education.
Date	2024

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Title: Educating the severely disabled medically complex child
Sub-Title: A case study on parent perspectives
Author: Grassmyer, Cassie
Abstract: This study examines the perspectives of parents who have children with severe and profound disabilities and medically complex conditions. Children have the right to a free and appropriate public education. However, when faced with extremely significant physical, cognitive, and medical deficits, quality of life plays a central role in determining the least restrictive environment for their education to take place. In this qualitative single case study research design, parent participants were interviewed to gain their perspective based on the conceptual framework that incorporates school options, barriers and resources, parent support, and quality of life. Data from interview transcripts were coded leveraging thematic analysis. Four major themes were found, and conclusions were developed by weaving evidence from the interviews and literature. Results revealed the importance of education, the importance of quality of life, giving the child what he or she needs, and finding the support needed to raise a child with severe and profound disabilities and medically complex conditions. These findings indicate that all stakeholders play a positive role in fostering more inclusive and equitable educational practices. This includes supporting educational programs, ensuring access to specialized schools or medical care, promoting social opportunities, advocating for vulnerable students, and acting with empathy, thereby shaping the policies and frameworks that guide special education.
Advisor: Hall-Wirth, Jessica
Committee Members: Mild, Toni
Nagle, Julie
Date Issued: 2024
Degree Granting Institution: Slippery Rock University of Pennsylvania
College of Education
Special Education
Degree Name: Degree of Doctor of Education (Ed. D.)
Degree Level: Doctorate Degree
Degree Discipline: Special Education
Genre: Dissertation/Thesis
Topics: Developmentally disabled children -- Education -- United States
Parents of developmentally disabled children -- Attitudes -- United States
Copyright Statement: The copyright to this item is owned by the author and falls under Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International Public License. (https://creativecommons.org/licenses/by-nc-nd/4.0/)