Supported decision-making when it comes to care for children and young adults with disabilities helps to incorporate patient autonomy into a collaborative health care decision-making process.5 This case illustrates the importance of longitudinal evaluation or multiple visits with confidential interviews when considering a patient’s wishes and understanding of the concept of contraception and sterilization. Confidential interview of the adolescent or woman with disabilities is essential when obtaining history and eliciting direct responses from the individual with disability. Direct conversations with the patient should focus on a wide range of important considerations including her understanding of sex, the risks of pregnancy and sexually transmitted infections, her reproductive desires including parenting, understanding of contraception options including risks/benefits, and her ability to make reproductive healthcare decisions. In this case, the patient and family met, not only with a gynecology expert with over 20 years of experience caring for young women with disabilities, but also with a sexual health counselor and an advanced practice provider knowledgeable in reproductive healthcare for women with disabilities. After consultations with several providers, it was determined that the patient was not able to give consent for a permanent sterilization procedure.
Contraceptives vs sterilization
Tubal ligation is no longer considered standard contraceptive care for individuals with intellectual disabilities. However, among women with disabilities, a growing body of research has identified that, compared to peers without disabilities, the odds of sterilization compared to long-acting reversible contraception use is higher.6 Given a history of government-sanctioned sterilization programs that targeted people with disabilities, it is important that ob/gyns remain aware of possible unconscious biases that may lead to reproductive coercion.7-10 It is imperative that healthcare providers instead uphold the reproductive rights of patients with developmental disabilities, particularly in settings in which capacity is blurred and parental pressures may threaten these rights.
Contraception and reproductive rights
Contraception selection is a highly personal and individualized choice for all women, and it may be dictated by patient preference, medical or family history, financial constraints and access, among other factors. Reproductive rights are among the fundamental human rights, which include the right to autonomy and self-determination without discrimination or coercion, including decisions about contraception and child bearing.11 Women with disabilities are a vulnerable population at particular risk of coercion with regard to their reproductive rights. They are not always deemed to have capacity of their medical decisions and can fall victim to coercion by medical providers, family, and caregivers. Healthcare providers need to be aware of their own biases towards women with disabilities’ reproductive capacities. Providers should strive to provide counseling with a model of reproductive justice, which defines a women’s reproductive rights to equally include the right to an abortion, the right to contraception, and the right to pregnancy and parenthood.12 Healthcare providers must also be vigilant in assessing for coercion when the patient with disabilities or the family or caregiver request sterilization. Our role as healthcare providers is to counsel regarding contraceptive options, to assist with understanding risks, benefits, and procedures, and to respect and support patient autonomy.
Reproductive rights for individuals with differences in abilities
This case illustrates the intricacies of contraception management and decision-making when intellectual disability is mild or moderate, capacity for informed consent is uncertain, and parental/caregiver wishes are discordant with patient desires and provider comfort.
The ongoing trend towards sterilization of people with disabilities highlights the importance of awareness among ob/gyn providers regarding the potential for reproductive coercion in this population.7,10 As time passes, and with an expanding armamentarium of methods for enabling women—of all abilities—to choose if and when they desire to carry a pregnancy and how they wish to manage their own reproductive health, it is our job to ensure that our patients’ goals are met in a medically safe manner that is in line with their reproductive rights, free of coercion.
- Center for Disease Control Prevention. Prevalence and most common causes of disability among adults--United States, 2005. MMWR: Morbidity and Mortality Weekly Report.2009;58(16):421-426.
- Haynes RM, Boulet SL, Fox MH, Carroll DD, Courtney-Long E, Warner L. Contraceptive use at last intercourse among reproductive-aged women with disabilities: an analysis of population-based data from seven states. Contraception. 2018;97(6):538-545.
- Kripke C. Supported health care decision-making for people with intellectual and cognitive disabilities. Family Practice. 2016; 33(5): 445-446.
- Curtis KM, Tepper NK, Jatlaoui TC, et al. U.S. Medical Eligibility Criteria for Contraceptive Use, 2016. MMWR Recomm Rep.2016;65(3):1-104.
- Adams RC, Levy SE and Council on Children with Disabilities. Shared Decision-Making and Children With Disabilities: Pathways to Consensus. Pediatrics.2017; 139(6).
- Wu J, Braunschweig, Y, Harris, LH et al. Looking back while moving forward: A justice-based, intersectional approach to research on contraception and disability. Contraception. 2019; 99(5): 267-271.
- Wu JP, McKee KS, McKee MM, Meade MA, Plegue MA, Sen A. Use of reversible contraceptive methods among US women with physical or sensory disabilities. PerspectSex Reprod Health. 2017;49(3):141-147.
- Wu JP, McKee MM, Mckee KS, Meade MA, Plegue M, Sen A. Female sterilization is more common among women with physical and/or sensory disabilities than women without disabilities in the United States. Disabil Health J.2017;10(3):400-405.
- Mosher W, Hughes RB, Bloom T, Horton L, Mojtabai R, Alhusen JL. Contraceptive use by disability status: new national estimates from the National Survey of Family Growth. Contraception.2018;97(6):552-558.
- Li H, Mitra M, Wu J, Parish S, Valentine A, Dembo R. Female sterilization and cognitive disability in the United States, 2011-2015. Obstet Gynecol. 2018;132(3):559-64.
- Frohmader, C, Ortoleva, S. The Sexual and Reproductive Rights of Women and Girls with Disabilities. ICPD International Conference on Population and Development Beyond 2014; July 1, 2012. Available at SSRN:https://ssrn.com/abstract=2444170
- Ross L, Solinger R. Reproductive Justice: An Introduction. In:Reproductive Justice: A New Vision