Author ORCID Identifier

0000-0002-9341-0003

Date of Award

Spring 3-7-2024

Degree Type

Dissertation

Degree Name

Doctor of Public Health (DrPH)

Department

Public Health

First Advisor

Dr. Erin Vinoski Thomas, PhD, MPH

Second Advisor

Dr. Carlos Pavão, DrPH

Third Advisor

Dr. Marsha Michie, PhD

Fourth Advisor

Robert Dinerstein, JD

Abstract

Background: For nearly twenty years, 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 (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. projecting the outcomes; 6. confronting the trade-offs; 7. deciding; 8. and telling the story. In completing Step 2, “Assembling Evidence,” I conducted a targeted literature review and qualitative interviews with 10 different interdisciplinary and bipartisan policy experts using the responsive interview approach, then I applied the Framework Method to analyze interview data.

Results: The literature and interviews suggest that federal policy initiatives are unlikely to pass given the current political climate but can be effective at bringing skeptical stakeholders to the table. The most cost effective and promising 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 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 medical and genetics organizations as the linchpins for establishing standards in the field of obstetrics to address the harms to both people with disabilities and their parents caused by ableism, and federal research grants hold significant promise in facilitating collaborative work between medical organizations and the disability advocacy community.

DOI

https://doi.org/10.57709/36975094

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