Author ORCID Identifier

https://orcid.org/0000-0003-1345-1815

Defense Date

2024

Document Type

Dissertation

Degree Name

Doctor of Philosophy

Department

Special Education

First Advisor

Yaoying Xu, Ph.D.

Second Advisor

Christine Bae, Ph.D.

Third Advisor

Serra de Arment, Ph.D.

Fourth Advisor

William Muth, Ph.D.

Abstract

Parents of children with Down syndrome (Ds) and congenital heart disease (CHD) often experience challenges when navigating disability and special education policy enactments on behalf of their child. Without adequate resources, these parents often fail to attain what they believe is best, and what their children are entitled to by law in the United States of America. Scholars have found that individuals and families facing these challenges may experience a lower life expectancy and quality of life. This study analyzed a mother's autoethnographic data through an embedded multiple case study mixed methods design. This unique perspective of raising a child with Ds and CHD from 2016 – 2022 adds depth to the existing literature on cases of policy implementation including Home and Community Based Services waivers (HCBS), eligibility for special education, least restrictive environment, and exclusionary discipline. Through this convergent approach, findings align with existing literature indicating parents of children with Ds and CHD in need of HCBS waivers successfully navigate cases of policy implementation by loving their child unconditionally, acquiring and utilizing social, cultural, and economic capital, and possessing agency. Implications from this study indicate that the rights afforded through the Americans with Disabilities Act of 1990, the Olmstead decision of 1999, and the Individuals with Disabilities Education Act of 2004 may be more accessible to privileged individuals. Countering the overwhelming deficit-based approach to the current literature, future research should center the experience of mothers of children with Ds and CHD in need of HCBS waivers to ascertain the nature of successful approaches to meeting their child's needs.

Rights

© Monica E. Grillo All Rights Reserved

Is Part Of

VCU University Archives

Is Part Of

VCU Theses and Dissertations

Date of Submission

8-5-2024

Available for download on Monday, June 18, 2029

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