Dissertation Title: A COMPREHENSIVE POLICY ANALYSIS TO ADDRESS THE PUBLIC HEALTH DILEMMA OF SYSTEMIC ABLEISM AND PATIENT DISTRESS FOLLOWING PRENATAL SCREENING FOR DISABILITIES

Dissertation Chair: Dr. Erin Vinoski Thomas

Dissertation Abstract: Background: For nearly twenty years, multiple research studies have demonstrated that the majority of pregnant patients do not receive the information and support they need? when learning about a potential disability diagnosis (Meredith et al., 2023; Nelson Goff et al., 2013; Skotko, 2005). These negative experiences and lack of information can lead to lasting emotional harm for the pregnant patient and negatively impact patient/provider relationships for medically vulnerable populations (Krell et al., 2023; May et al., 2020). Therefore, the purpose of this policy analysis is to identify potential policy solutions that can address this problem.

Methods: Using the Bardach Model for Policy Analysis, I applied the eightfold path which includes 1. defining the problem; 2. assembling evidence; 3. constructing the alternatives; 4. selecting the criteria; 5. project the outcomes; 6. confronting the trade-offs; 7. deciding; 8. and telling the story. Specifically, in conducting Step 2,  “Assembling Evidence,” I conducted a literature review using key terms. I also conducted a qualitative policy analysis study, using the responsive interview approach, with 10 different interdisciplinary and bipartisan policy experts and applied the Framework Method to analyze interview data.

Results: The literature and interviews suggest that federal policy initiatives are the least likely to be successful given the current political climate surrounding initiatives involving prenatal care, but policy initiatives could be effective at bringing skeptical stakeholders to the table. The most cost effective and hopeful solutions involve 1. applying for research funding to improve outcomes for people with disabilities as a health disparities population at the first point on the life course and 2. advocating directly to medical and genetics organizations, specifically the American College of Obstetricians and Gynecologists, to be more inclusive of the disability community in their health equity initiatives and the development of guidelines, medical training, and organizational practices.

Conclusion: Fundamentally, the disability bias conveyed during prenatal screening conversations that causes negative experiences for pregnant patients is rooted in systemic ableism. Therefore, the literature and interviewees in this policy analysis pointed to ACOG, and other medical and genetics organizations, as the linchpin for establishing standards in the field of obstetrics to address the harms to both people with disabilities and their parents caused by ableism. Moreover, people with disabilities have accurately been identified as a health disparity population by NIH, and research grants to address those health disparities at the first point on the life course hold significant promise in facilitating collaborative work between medical organizations and the disability advocacy community.