By Paige Falion, MS, Senior Program Manager, Child & Adolescent Health, Association of Maternal and Child Health Programs (AMCHP), and Mallory Cyr, MPH, CYSHCN Program Manager, Association of Maternal and Child Health Programs (AMCHP).
The topic of disability justice is a timeless one, especially when considered in the context of reproductive health. For decades, disabled people have been fighting for autonomy and equal access to reproductive health services and education. In the well-known 1927 case of Buck v. Bell, a woman deemed to be “mentally feeble,” was forcibly sterilized so as not to create another generation of disabled people. Currently in this country, the discussion continues about power, choice, and who should be able to create life. Although the topic may not make headlines, disabled people in the U.S. still face extreme inequities when it comes to accessing sexual and reproductive health services— more than 30 years after the Americans with Disabilities federal legislation was passed. The Americans with Disabilities Act (ADA) is essentially a civil rights law, whereby Congress declared that having a “disability is a natural part of the human experience and cannot be the basis of discrimination in any aspect of life,” including health care.
AMCHP has historically been a policy/advocacy collaborator with organizations for whom disability justice is more central to their mission. Yet, as an association representing members at the highest levels of state government who are working to improve maternal and child public health systems, AMCHP must do more to acknowledge the importance of addressing reproductive health inequities impacting all maternal and child health (MCH) populations. This issue is especially pertinent for children and youth with special health care needs (CYSHCN). We must consider what happens when these “children and youth” reach adulthood. They become adults with disabilities experiencing the “services cliff,”[1] navigating systems that continue to fail disabled people on the other side. AMCHP has identified two essential leadership levers that we can push, together with Title V MCH and CYSHCN Programs, to approach reproductive justice more fully and inclusively for disabled people within the existing MCH infrastructure.
Lever 1—National Performance Measure (NPM) 12. Selected as a priority by 36 states and jurisdictions in FY 22, this measure seeks to increase the percent of adolescents with and without special health care needs who have received services to prepare for the transitions to adult health care. Although Title V programs have made significant strides in the number of young people receiving the necessary services to transition to adult health care, this measure does not account for the impact on the young person transitioning to adult health care. Only a few Title V programs have evidence-based or -informed strategy measures (ESMs) that seek to understand the impact of these services on those who are transitioning (versus the provider or trainings). ESMs look at satisfaction with one’s transition experience or achievement of transition plan goals by a certain date. Not only are ESMs lacking, no current ESMs or State Performance Measures focus specifically on sexuality or reproductive health care services. This indicates NPM 12 must improve to fully capture the need for systems that recognize:
- Children and youth with special health care needs age into disabled adults
- Sex is indeed relevant to disabled people
The transition to adult health care cannot take place if the systems (and people providing services within them) fail to acknowledge that everyone has the right to make adult decisions about their bodies. Title V agencies are connected with disability, family, and youth and young-adult led organizations and should continue to both strengthen these relationships and actively engage youth and young adults with disabilities, especially those from historically marginalized populations, in all aspects of health care transition planning, implementation, and evaluation.
Title V Example. In 2012, the Oregon Health Authority prepared a report, Preconception Health Recommendations for Young Adults with Disabilities: A Final Report from an Action Learning Collaborative, as part of an AMCHP Action Learning collaborative project on preconception health. The goal was to initiate action within public health, medical providers, schools, families, and youth to shed light on the preconception health needs of youth with disabilities of reproductive age. This work was done intentionally by engaging with youth and young adults with disabilities who shared their experiences with the project team. Oregon’s Title V program continues to be a leader in this work through its sexuality education programming, focused on providing information and skills to young adults with intellectual and developmental disabilities in transition programs in FY 22.
Lever 2— Lift up voices of those with lived experience. Almost all research, resources, policy briefs, and other sources on the topic of reproductive health for disabled people exist because of the courageous and honest individuals who have spoken out about the inequities they face. For example, a recent University of Michigan study focused solely on uplifting the experiences of women with physical disabilities showed that not only did the disabled women receive poor education on their reproductive options, but every participant had the experience of their health care provider disagreeing with their reproductive goals.[2] The biases of the physicians in the study demonstrate the stark reality of the systems that continue to fail disabled people, especially those of reproductive age. The study sought to create a conceptual framework to guide intervention development to reduce reproductive health inequity and improve reproductive health outcomes of women with physical disabilities. The author of the study said this about the need for patient-reported outcome measures:
“You can’t fix what you can’t measure, so we need to create measures that show us the scope of the issues, how many people are affected and in what ways. This is what we need to inform ways we can intervene and change things.”[3]
AMCHP is committed to supporting Title V programs in seeking ways to continuously lift up these voices as a key strategy for improving the aforementioned inequities through the flexibility of the Title V MCH Block Grant.
Additional inequities for disabled birthing people of color. Unfortunately, most of the literature and resources related to this topic mostly focus on or originate from the white, straight, cisgender population of disabled birthing people. This is certainly a limitation, yet a reality we must come to terms with given our country’s history of merging perceptions of disability with racism, xenophobia, and sexism to dehumanize people deemed “less worthy of reproduction and family formation.”[4] Public health professionals, especially community health workers or others working in their communities of origin, are uniquely positioned to lift up the voices of those who have been harmed so we can begin the healing process and righting those wrongs. We must be patient and include meaningful partnership and the sharing of power with communities hit hardest by these disparities. These communities must be embraced as thought leaders and individuals to whom we, as public health organizations, are accountable.[5]
Where do we go from here? As we continue on to observe Women’s History Month, Developmental Disabilities Awareness Month, and International Adolescent Health Week, we ask our readers to consider how these three groups (women and other birthing people, people with developmental disabilities, and adolescents) have contributed to the growing knowledge base of Disability and Reproductive Health by checking out the following selection of resources created by and for these groups. For our readers who work in Title V programs, consider how these resources and the many perspectives shared within them can support you to push the two leadership levers described in this article to approach reproductive justice more fully and inclusively for people with disabilities within the existing MCH infrastructure.
- Take Charge! A Reproductive Health Guide for Women with Disabilities—created by The Empowered Fe Fes, a group of young women with disabilities, with a grant from the Chicago Foundation for Women.
- Britney Spears’s Conservatorship Is a Disability Rights Issue That Deserves More Attention—written by Neurodiversity Expert and Attorney, Haley Moss.
- In Their Own Words: Guidelines for Supporting the Sexual Health of Young People Experiencing Intellectual/Developmental Disabilities—created by The Sexual Health Equity for Individuals with Intellectual/Developmental Disabilities (SHEIDD) project.
Further Resources
AMCHP—Disability Rights and Sexual Health Resources.
The Association of University Centers on Disabilities’ Sexual Health Special Interest Group University Centers for Excellence in Developmental Disabilities Education, Research, and Service (UCEDD) Network Survey: Sexual Health and Disability Efforts.
The Importance of Expanding Sex-Ed to People with Developmental Disabilities, an interview of Katherine McLaughlin, a long-time sexuality educator for adults and youth with developmental disabilities, conducted by Katherine Marrone.
Including People with Disabilities in Reproductive Health Programs and Services Fact sheet by The National Association of County & City Health Officials’ Health and Disability program.
Oregon Health & Science University UCEDD and Sexual Health Equity for Individuals with Intellectual and Developmental Disabilities (SHEIDD) Project Sexual Health Resource Hub: https://www.ohsu.edu/university-center-excellence-development-disability/sexual-health-resources.
Our Sexuality, Our Health: A Disabled Advocate’s Guide to Relationships, Romance, Sexuality, and Sexual Health https://odpc.ucsf.edu/advocacy/sexuality-sexual-health/our-sexuality-our-health-a-disabled-advocates-guide-to#pdf.
AMCHP Collaborators: Ben Kaufman, Associate Director, Workforce Development and Capacity Building, Kristina Wint, Sr. Program Manager, Reproductive and Maternal Health and Wellness, and Nia Sutton, Program Manager, Emergency Preparedness and Response.
[1] Roux, A. M., Rast, J. E., Anderson, K. A., & Shattuck, P. T. (2017). National autism indicators report: Developmental disability services and outcomes in adulthood. Philadelphia, PA: Life Course Outcomes Program, A.J. Drexel Autism Institute, Drexel University https://drexel.edu/autismoutcomes/publications-and-reports/nat-autism-indicators-report/.
[2] Kalpakjian, C. Z., Kreschmer, J. M., Slavin, M. D., Kisala, P. A., Quint, E. H., Chiaravalloti, N. D., Jenkins, N., Bushnik, T., Amtmann, D., Tulsky, D. S., Madrid, R., Parten, R., Evitts, M., & Grawi, C. L. (Nov. 2020). Reproductive health in women with physical disability: A conceptual framework for the development of new patient-reported outcome measures. Journal of Women’s Health (Larchmt), 29(11), 1427–1436.
doi: 10.1089/jwh.2019.8174. Epub 2020 May 19. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7703246/.
[3] Fromson, N. (2021, July 28). Focusing on the woman, not just the disability, could improve reproductive care [web log]. Retrieved from https://labblog.uofmhealth.org/body-work/focusing-on-woman-not-just-disability-could-improve-reproductive-care.
[4] Stern, A. M. (2020). Forced sterilization policies in the U.S. targeted minorities and those with disabilities – and lasted into the 21st century. The Conversation. https://theconversation.com/forced-sterilization-policies-in-the-us-targeted-minorities-and-those-with-disabilities-and-lasted-into-the-21st-century-143144.
[5] AMCHP, CityMatCH, National Healthy Start Association, National Institute for Children’s Health Quality. (2020). Joint Organizational Commitment to Anti-Racism and Racial Equity. https://amchp.org/wp-content/uploads/2021/11/Joint-Organizational-Commitment-to-Anti-Racism-and-Racial-Equity.pdf.
