Ensuring the Reproductive Rights of Women with Intellectual Disability

Abstract

Background:

Women with intellectual disability experience disparities in sexual and reproductive health care services.

Methods:

To explore perceptions of caring for persons with disability, including individuals with intellectual disability, we conducted open-ended individual interviews with 20 practicing physicians and three video-based focus group interviews with an additional 22 practicing physicians, which reached data saturation. Interviews were transcribed verbatim. We used conventional content analysis methods to analyse transcripts.

Result:

Physicians indicated that intellectual disability can pose challenges to providing sexual and reproductive health care. Observations coalesced around four themes: (1) communication; (2) routine preventive care; (3) contraception and sterilization; and (4) conception and parenthood. Observations raised concerns about equity of access to reproductive care for women with intellectual disability.

Conclusions:

In our sample of physicians, we found attitudes that might compromise reproductive care for women with intellectual disability, suggesting that gaps remain in ensuring reproductive rights of women with intellectual disability.

Introduction

The 1994 World Health Organization (WHO) International Conference on Population and Development affirmed that human rights include reproductive rights (World Health Organization, 1994). The WHO identified people with disability as experiencing significant barriers to ensuring their rights, asserting that “assistance should be provided to persons with disabilities in the exercise of their family and reproductive rights and responsibilities”(World Health Organization, 1994). Multiple factors might contribute to individuals with disability experiencing significant barriers to reproductive health care—just as multiple factors contribute to disability. The WHO defines disability as an “umbrella term for impairments, activity limitations or participation restrictions,” conceiving “a person’s functioning and disability … as a dynamic interaction between health conditions …and contextual factors,” including person’s physical and social environments and personal attributes (World Health Organization, 2001). Thus, barriers to reproductive health care and disparate reproductive outcomes for persons with disability could arise from various sources, including hurdles imposed by the physical and social environments in which they live.

An expanding literature documents factors contributing to inequitable reproductive outcomes and health care experiences of women with physical disability. These include aspects of the women’s underlying disabling condition, as well as stigmatizing assumptions among society and health care professionals (Iezzoni & Mitra, 2017), unmet needs in pregnancy and childbirth (Long-Bellil, Mitra, Iezzoni, Smeltzer, & Smith, 2017; Tarasoff, 2017), and environmental impediments to routine prenatal care (Iezzoni, Wint, Smeltzer, & Ecker, 2015). However, across disability groups, women with intellectual disability are perhaps at greatest risk of experiencing barriers to their reproductive rights.

As for persons with other types of disability, various factors affect the outcomes and reproductive health care experiences of women with intellectual disability. At the outset, defining this population of women with intellectual disability is complex; nevertheless, these definitions affect societal perceptions of the validity of their reproductive rights. According to the 2016 U.S. Behavioral Risk Factor Surveillance System (BRFSS) survey, approximately 11.7% of reproductive age women have a cognitive disability (Okoro, Hollis, Cyrus, & Griffin-Blake, 2018), defined broadly as serious difficulty concentrating, remembering, or making decisions because of a physical, mental, or emotional condition (Okoro et al., 2018). According to the 2014–2016 National Health Interview Survey (a nationally-representative survey of civilian, noninstitutionalized U.S. residents), which uses a narrower definition, approximately 0.9% of girls have ever been diagnosed with intellectual disability (Zablotsky, Black, & Blumberg, 2017). The 2011–2015 U.S. National Survey of Family Growth uses the same broad definition as BRFSS; this survey found that women with intellectual disability are 1.5 times more likely to undergo sterilization as women without disability (Mosher et al., 2018) and 2.7 times more likely to undergo hysterectomy without clear medical indications (Li et al., 2018).

As for women with physical disability, a range of factors affect the outcomes and reproductive care of women with intellectual disability. Physicians express general challenges communicating with patients with intellectual disability, notably choosing to interact with caregivers and making minimal efforts to communicate directly with patients (N. Agaronnik, Campbell, Ressalam, & Iezzoni, 2019b). Communicating with women patients with intellectual disability about sexual health care can be especially challenging, complicated by inadequate evidence about effective sexual education for this population (Greenwood & Wilkinson, 2013). Persisting stigmatized societal attitudes about reproductive rights of women with intellectual disability may affect clinician-patient relationships, potentially causing patients’ wishes to be ignored or dismissed (J. Wu et al., 2019). Complex practical considerations for women with intellectual disability, such as managing menstrual hygiene (Wilbur, Torondel, Hameed, Mahon, & Kuper, 2019), can cause caregivers and physicians to advocate sterilization (Patel, 2017; J. P. Wu et al., 2017). Performing routine physical examination and preventive screening (e.g., Papanicolaou tests) for women with intellectual disability may pose challenges, especially around effective communication and patient cooperation, affecting quality of care (Greenwood & Wilkinson, 2013).

In the U.S., physicians remain the primary providers of reproductive health care, including screening and prevention services. However, few studies have explored attitudes of U.S. physicians toward providing this care to women with disability broadly (Mitra et al., 2017; Smeltzer, Mitra, Long-Bellil, Iezzoni, & Smith, 2018), let alone women with intellectual disability. As part of a larger study, we conducted individual and focus group interviews to explore views and experiences of practicing U.S. physicians about caring for people across disability types, including intellectual disability. Recognizing complexities of gender terminology, we use the term “women” to refer to individuals who can become pregnant and bear children.

Methods

The Massachusetts General Hospital (MGH) Institutional Review Board (IRB) approved this study. We summarize our methods below and provide detailed information in the Consolidated Criteria for Reporting Qualitative Research (COREQ) Checklist (Appendix). These findings came from a larger study that had as its ultimate goal to survey practicing physicians around the U.S. about caring for people with various disabilities. As is best practice in survey design, we started by first exploring in-depth the perceptions and experiences of our targeted survey participants – practicing physicians – about the topic of interest. For this exploratory investigation, we conducted individual and focus group interviews. Individual and focus group interviews each have different strengths: individual interviews elicit in-depth responses from participants; focus group interviews permit participants to interact, thus drawing out varying views (Lambert & Loiselle, 2008).

Individual Interviews

In fall 2017, we conducted individual telephone interviews with 20 physicians currently practicing in Massachusetts across selected specialties (primary care, rheumatology, neurology, obstetrics/gynaecology, and orthopaedics) about caring for patients with disability. Interviews followed an open-ended protocol, which included modules for different disability types, including intellectual disability. Interviews lasted approximately one hour and were audio-recorded and transcribed verbatim by a professional service. Detailed descriptions of these interviews and their analyses appear elsewhere (N. Agaronnik, Campbell, Ressalam, & Iezzoni, 2019b, 2019c, 2019a; N. Agaronnik, Pendo, Campbell, Ressalam, & Iezzoni, 2019).

Focus Group Interviews

We aimed to conduct three focus groups, one each involving non-rural primary care, selected specialty (rheumatology, neurology, obstetrics/gynaecology, orthopaedics, and ophthalmology), and rural primary care physicians practicing across the U.S. We used SERMO (http://www.sermo.com/) a professional social networking site for physicians to recruit 8–10 physicians for each focus group. SERMO used our recruitment criteria (available upon request) to contact eligible participants, excluding trainees, non-U.S. physicians, and physicians who are no longer practicing. SERMO provided only key demographic information about participants (i.e., no identifying information) and arranged $200 incentive payments.

We developed the focus group moderator’s guide based on findings from the individual interview protocol, starting with modules addressing different disability types, including intellectual disability. The moderator’s guide (available upon request) included high-level, open-ended questions, with recommended probes. The same researcher (L.I.I.) who conducted each individual interview moderated the focus groups, which were conducted from 7:00–9:00 p.m. EST. SERMO arranged the video platform, which displayed real-time images of moderator (L.I.I.) and participants, with their first names. Participants were told that other researchers were observing although only the moderator could communicate with participants. Research staff transcribed the focus groups from the recorded video, identifying individual speakers.

Two research teams independently analysed focus group transcripts. The Boston, MA team (N.A., L.I.I.) used conventional content analysis (Hsieh & Shannon, 2005), a method that draws explicitly from data without overinterpretation of results (Sandelowski, 2000, 2010). The Springfield, MA team (T.L., C.D., A.P.C., K.R.) used directed content analysis (Hsieh & Shannon, 2005), which uses literature to generate codes to analyse the data and adds new codes from the data using an iterative process. The researchers reached consensus through email and telephone communication.

Combining Themes from Individual and Focus Group Interviews

We used qualitative method triangulation to combine themes from individual and focus group interviews (Lambert & Loiselle, 2008), allowing us to achieve data completeness and confirmation of themes (Adami & Kiger, 2005; Halcomb & Andrew, 2005). Themes identified in individual and focus group interviews were complementary, with individual interviews revealing more personal experiences and focus groups generating more opinions and beliefs (Lambert & Loiselle, 2008).

Results

Table 1 presents demographic characteristics of participants. The analyses produced four broad themes: (1) communication, (2) routine preventive care, (3) contraception and sterilization, (4) conception and parenthood.

Table 1.

Characteristics of Interviewees and Their Practices n = 42

Characteristic	Individual Interviews (n = 20)	Focus Groups (n = 22)
Age: mean (S.D.) years	53.5 (11.7)	51.3 (9.9)
Age range: years	38–76	35–67
Gender: n
Male	10	14
Female	10	8
Race: n
White	18	10
Other*	2	12
Hispanic ethnicity: n	1	2
Primary Care (Rural): n
General Internal Medicine	0	2
Family Practice	0	5
Primary Care (Non-Rural): n
General Internal Medicine	7	4
Family Practice	1	3
Specialty (Non-Rural): n
Rheumatology	2	2
Neurology	6	2
Obstetrics/gynecology	2	2
Orthopedics	2	1
Ophthalmology	0	1
Time in practice: range of years
0–5	0	0
5–10	1	6
11–20	6	9
21–30	4	6
31+	9	1
Type of practice: n
Private, not hospital-based	4	19
Hospital based practice	16	2
Other	0	1
U.S. region of practice: n
South	0	8
Midwest	0	8
West	0	3
Northeast†	20	3

^*For focus group recruitment, SERMO allowed participants to self-identify race. Of those who designated “other,” 5 identified as Asian/Pacific Islander, 1 as African American Black Caribbean 1 as Jewish, and 1 as Indo-Pakistani., and 2 as Mixed (with 1 participant specifying Asian and Caucasian).

^†Physicians were recruited from Massachusetts for individual interviews.

Communication

Participants recognized the importance of communication in clinical encounters, with some highlighting challenges in interacting with patients with intellectual disability. For general exams, participants described the need to communicate directly with patients, as one primary care physician observed:

We do ask the caregiver and the patient if they … have the intellectual capability to provide an answer. We do ask what their preference is and … we try very hard to meet that preference… One of the things we talk a lot with the residents [trainees] about is making sure they address both to the patient and guardian regardless of whether the patient can interact. We … base that on the idea of respecting the patient … and also to remind the resident that the relationship is with the patient, and the guardian is there facilitating that relationship.

Another primary care physician agreed: “I’ll talk to my patients, even the ones that aren’t able to interact at all, and I’ve had caregivers tell me ‘no they don’t understand you,’ but I’ll talk to them anyway.” Another physician indicated a preference to communicate directly with the caregiver: “I mainly thrash out the issues with the caretaker, who generally then explains them to the patient.”

Communicating directly with patients on the topic of sexual and reproductive health sometimes elicited feelings of uncertainty and unpreparedness. A primary care physician described a situation concerning a male patient with intellectual disability:

We just had a patient come in who wanted to talk about sexual activity, had mild developmental delay, had lived with his parents but didn’t want his parents to be involved in the conversation. And that was a little bit challenging because the mother was one of those parents that was like, ‘well I need to know everything.’”

The participant described being unsure how to proceed.

Some participants employ visual strategies to maximize communication with their patients. One OB/GYN specialist said, “I have a little model where the IUD, you can see and touch…” The OB/GYN specialist described providing screening services: “The first Pap smear is very hard, and so I definitely do step-by-step and work them through before we do it… We just have a uterus, not a picture, but a 3D little thing, where you can actually see and hold it towards my belly and say, ‘That’s where it is…’”

In addition, participants described general concerns about examining patients with intellectual disability. One OB/GYN specialist observed: “They don’t know why I’m touching them frequently. Well, maybe they’ll be able to understand it after a couple of discussions, or maybe they would never understand it.” As a result, this physician prefers to sedate some patients with intellectual disability prior to routine procedures. Another physician noted, “We have to drop down to base levels of exam” when examining a patient with intellectual disability. The participants described one such incident: “The communication piece was the most unrewarding, lousy communication I’ve had with a patient my whole career. It was terrible.”

One OB/GYN specialist voiced concern that some persons with intellectual disability are at risk for sexual abuse, but that, “It can be difficult to tease out.” The caregiver might be the abuser, raising concerns about interacting with patients when their caregiver is present. A primary care physician explained:

There have been a couple times … I’ve asked the caretaker to leave the room while I ask if there was anything they wanted to tell me that they didn’t feel safe saying in front of the caretaker… I get how stressful these situations can be for some people, patients and caretakers alike.

Another primary care physician reported, “I’ve had situations like that too, where sometimes you can have the person not in the room so you can get a feel from the patient of how things are going on at home.” Another primary care physician believes that it sometimes is best to examine patients with intellectual disability without caregivers present:

We were examining a patient who was significantly developmentally disabled…When we questioned the caregiver, they were sort of very hesitant to talk about, they got very defensive about the whole thing….What we ended up doing was contacting [Adult Protective Services] APS, and they went to the patient’s house and were there by the time the patient and caregiver returned home. So subsequently, that caregiver was removed from the care of that patient.

However, these communication challenges can consume considerable time during a busy practice day. A primary care physician observed: “In a practice, you got to move forward. If you become stagnant in a lot of these social issues, … you don’t get a lot out of the day. We’re like Dory the fish, we’re trying to just swim forward, and a lot of times, you’re just basically paralysed with these things.” Ironically, Dory the fish – the participant’s chosen metaphor – is a reference to a Disney movie character with an intellectual disability; some people with disability view Dory as a demeaning caricature of individuals living with intellectual disability.

Routine Preventive Care

Physicians suggested that Pap tests may not be necessary for all women with disability, especially those with intellectual disability. A primary care physician explained: “We have had patients where the level of disability is too high, and it is such a very delicate procedure and a very delicate part of the human anatomy, and we felt that we couldn’t control the situation enough to do it properly.” Another primary care physician suggested that patients with disability in general are not sexually active, and therefore at lower risk of cervical cancer; therefore, forgoing Pap testing does not increase the chance of missing cervical cancer. Another primary care physician disagreed: “I think sometimes they don’t know that they don’t have to have it [screening] done. But I don’t know if I wouldn’t allow them to have it done just because of the intellectual disability. Because you still don’t want them to have any cancer and have to deal with that.”

Participants mentioned time constraints and a lack of preparedness for performing routine screening procedures on women with intellectual disability. “I’ve cut down on the number of Pap’s I’ve had to do because … there are other people that could do it,” said one primary care physician. Sometimes primary care physicians prefer for specialty physicians, such as OB/GYNs, to perform Pap tests. As one primary care physician observed, “If they are sexually active and mildly mentally retarded, I think probably I would feel more comfortable for gynaecology to do it …”

Contraception and Sterilization

Several participants expressed strong views regarding routine contraception and sterilization for women with disability. One OB/GYN practitioner noted, “Just because they are intellectually disabled doesn’t mean they can’t get pregnant.” Some participants indicated that considering contraception is appropriate for sexually active patients, but participants’ views varied seemingly by type of disability and the level of patients’ presumed adherence to the physician’s contraception recommendations. The same OB/GYN physician continued, “They are sexually active, and so contraception when they come to see me that is the real issue… People who cooperate, we put in IUDs, and people with low IQ, they are quite cooperative.” However, for patients with intellectual disability who do not appear cooperative, the physician reported, “I medicate as best as I can… those who don’t cooperate. There is Depo- Provera and sterilization as needed.” (Depo-Provera is the brand name for medroxyprogesterone, an injection long-acting contraceptive agent.)

The OB/GYN physician described sterilization of patients with intellectual disability as a routine practice, reporting: “I am the local person who does sterilizations on low IQ. I see people with all kinds of disability, many of whom show up pregnant… For patients who are never going to be any better, where their parents insist on sterilization, with really good documentation, we do tubal ligations on them.” A neurologist concurred: “But depending on disability, I agree that they need tube ligation and things like that.” Other focus group participants did not challenge assertions about sterilization.

Participants advocating sterilization for women with intellectual disability offered different rationales. One OB/GYN physician suggested that hysterectomy could solve menstruation management concerns: “I have also performed hysterectomy … for those women who cannot deal with menstruation, and their caregivers cannot deal with this, and we cannot hormonally shut down menstruation. Then it’s appropriate to perform a hysterectomy.” Participants described sterilization as eliminating the risk of having a child that the patient could not care for, imposing additional responsibility on the patient’s caregivers. A neurologist supported sterilization, saying that, “You don’t want to add something nobody can take care of.”

Pregnancy and Parenthood

Participants expressed different attitudes about patients with intellectual disability having children. Some stated that these patients could not serve as responsible caregivers, making sterilization the most appropriate option. An OB/GYN physician elaborated: “Before I was a physician, I was a special education teacher for ten years, so I have that background. And your intrinsic IQ is 50 or 60, then you don’t have the intellectual ability to take care of anybody, let alone yourself or let alone anybody else. And it’s the most appropriate thing to sterilize that patient.” Another OB/GYN specialist described the challenges of caring for pregnant women with disability, especially women whose parents still provide daily supports:

…You have to work closely with OB/GYN and with high risk pregnancy specialist and everyone that’s taking care of them, [so] you’re not causing a total disaster pregnancy and hardship for parent and child down the road. It’s a sensitive issue – there is no one rule fits all. Sometimes they have requests that you cannot fulfil because it’s not in their best interest. For example, I have had patients who are dependent on their own parents who are coming in because they want children, and they can’t take care of themselves. But they want to bring a child into the world, and they have 65-year-old parents taking care of them. And it puts me in a difficult situation, because you don’t need a license to reproduce but you do need a license to practice medicine.

Discussion

Our findings suggest that U.S. physicians can feel uncomfortable or have strongly-held views about providing sexual and reproductive health care for women with intellectual disability. Some views by participants harken back to attitudes from earlier eras, when forced sterilization of women with intellectual disability was an accepted and unquestioned practice. Although our sample was not nationally representative, the attitudes and perspectives of the participants raise questions that deserve further understanding to assess the equity of reproductive care for women with intellectual disability.

As a starting point, effective communication with patients with intellectual disability is critical for ensuring their reproductive rights. The Americans with Disabilities Act (ADA) and Section 504 of the Rehabilitation Act of 1973 (for facilities and programs involving federal funds) require that health care providers “take appropriate steps to ensure that communications with individuals with disabilities are as effective as communication with others”(Department of Health and Human Services, 2016). Section 1557 of the Patient Protection and Affordable Care Act of 2010, which along with other goals aimed to reduce health disparities, extends this requirement across health programs and activities regardless of funding (Cornachione, Musumeci, & Artiga, 2016; Department of Health and Human Services, 2019). Our interviews suggest that physicians hesitate to communicate directly with patients with intellectual disability, even though some acknowledge it is important to try. Consistent with previous findings, physicians may underestimate the decision-making capacity of patients with intellectual disability, causing them to primarily rely on communicating with caregivers (N. Agaronnik et al., 2019b). This becomes particularly problematic when obtaining informed consent for medical procedures.

When communicating with patients with intellectual disability, especially on sensitive topics such as sexual and reproductive health, it is important to assume that an individual can provide informed consent unless proven otherwise. State laws generally reflect this assumption. For example, the Uniform Health-Care Decisions Act, a model U.S. federal statute drafted in 1993, provides that “an individual is presumed to have capacity to make a health-care decision” unless proven otherwise (Uniform Health Care Decisions Act § 2(e) (1994), n.d.). Attitudes and behaviours of providers are a crucial factor in determining whether informed consent represents actual patient interests (Goldsmith, Skirton, & Webb, 2008).

This is especially important given the risk of coercion by caregivers, especially when the patient may be subject to physical or sexual abuse in the home. For example, a National Public Radio investigation of unpublished 2011–2015 Department of Justice records on sex crimes found that people with intellectual disability are victims of sexual assault nearly seven times more often than people without disability (Shapiro, 2018). The perpetrators are typically people whom the victims rely upon, notably caregivers, family, or friends responsible for the care of the person with intellectual disability (Shapiro, 2018). For women with intellectual disability who are victims of rape, the perpetrator is a stranger less than 14% of the time. The dependence of some people with intellectual disability upon caregivers for assistance with intimate tasks such as dressing, bathing, and toileting gives caregivers physical proximity and interpersonal power that carries high potential for abuse (Shapiro, 2018).

Multiple factors, including challenges for effective communication, contribute to disparities experienced by people across types of disability in accessing routine screening and preventive services, such as Pap tests, mammography, and clinical breast exams (Andresen et al., 2013). A nationally representative analysis found that women with intellectual disability are 72% less likely to receive cervical cancer screening and 45% less likely to receive breast cancer screening (Parish & Saville, 2006). A large retrospective study of Medicare and Medicaid beneficiaries found that women with intellectual disability were significantly less likely to be in compliance with U.S. Preventive Services Task Force guidelines for both mammography and Pap test recommendations (Xu et al., 2017). Between 2008–2010, only 55% of community-dwelling women with intellectual disability ages 18–65 received a Pap test (Parish, Swaine, Son, & Luken, 2013).

Our interview findings suggest that physician-level factors may contribute to these disparities. Previous research suggests that physicians may struggle with performing procedures without accessible medical diagnostic equipment (N. Agaronnik et al., 2019a; Iezzoni, Kilbridge, & Park, 2010). Among our interview participants, some physicians indicated that screening procedures such as Pap tests may not be as important for women with intellectual disability because they are less likely to be sexually active and thus at lower risk for human papillomavirus infection (which can cause cervical cancer). Though prevalence of cervical cancer is lower in people with intellectual disability (Parish, Son, Powell, & Igdalsky, 2018), avoiding screening tests can put patients at risk. Furthermore, erroneous assumptions about the lack of sexual activity of women with intellectual disability does not justify failure to provide screening and reproductive health care services (Brown & McCann, 2018).

Erroneous assumptions (N. Agaronnik et al., 2019c) about sexual activity preferences were also apparent in physicians’ perspectives on contraception and sterilization, as well as women’s desires relating to parenthood. These assumptions echoed eugenics movement concepts, which framed sterilization as a means of protecting women with intellectual disability from unwanted pregnancy, even though the primary incentive was to prevent the perpetuation of disability (Reilly, 2015). Some interview participants justified sterilization by citing lack of patient compliance with other contraceptive options, difficulty managing menstrual hygiene, averting risk of repercussions from sexual abuse, and inability to serve parenthood roles. When evaluating these concerns, it is critical to recognize that they are not used as the primary justification for sterilization of people without disability. A double standard seems to exist for people with intellectual disability. For example, the comment by an OB/GYN specialist about Depo-Provera as a reasonable contraceptive option for uncooperative patients reflects broader concerns about the disproportionate use of this long-acting contraceptive option among women with intellectual disability, including those who are not sexually active (McCarthy, 2009). Although appropriate reasons do exist to use Depo-Provera (e.g., limiting menstrual blood flow and therefore hygiene concerns), its history of involuntary use among women with disability raises concerns about whether women with intellectual disability today are given opportunities to be truly informed and consent to its use.

Concerns about informed decision-making also relate to interventions like hysterectomy, proposed by one OB/GYN interviewee as a reasonable option when caregivers have difficulty managing menstrual hygiene of a woman with intellectual disability. Obviously, hysterectomy permanently eliminates women’s choices about pregnancy. Recognizing the risks of inequitable treatment, the American College of Obstetricians and Gynecologists states that the indications for procedures such as hysterectomy are the same for people with and without disability; furthermore, it is important to be aware of pressures from caregivers that are contrary to patients’ preferences (Committee on Adolescent Health Care, 2016). Inattention to these issues denies patients with intellectual disability their reproductive rights (Roy, Roy, & Roy, 2012).

Every state requires that physicians obtain informed consent from patients before a medical treatment or procedure. Each state also has a procedure by which a guardian can be appointed to make medical decisions if authorities determine that the patient lacks ongoing decision-making capacity. Although guardians generally have the right to consent to or refuse medical procedures on behalf of an incapacitated patient, some states require court approval for intrusive medical treatments and procedures, such as sterilization (Sandler, 2014). For example, in Massachusetts, the 1983 decision of Rogers v. Commissioner of Department of Mental Health held that a guardian must be granted authority to make decisions regarding “extraordinary” medical treatment, so-called “Rogers authority,” by a Probate and Family Court. A guardian with Rogers authority has the legal right to make decisions regarding intrusive medical treatments or procedures on behalf of the individual who is deemed “incapacitated”(Probate and Family Court Department Massachusetts Trial Court, 2015). Intrusive medical treatments include antipsychotic medications, chemotherapy, electroconvulsive therapy, and sterilization. The Court defines an “incapacitated person” as one who has been clinically diagnosed with a condition that makes them unable to communicate or make decisions that affect their health, safety, or self-care (Probate and Family Court Department Massachusetts Trial Court, 2015). Failure to comply with these specific legal protections can raise legal and ethical issues for physicians and institutions (Carlson & Dorfman, 2007).

Consistent with societal perceptions, participants expressed concern about the ability of women with intellectual disability to fulfil parenting roles. While parents with intellectual disability are overrepresented in cases of child neglect (Azar, Stevenson, & Johnson, 2012), this is often the product of poverty, prejudice, and lack of resources rather than disability (Special Interest Research Group on Parents and Parenting with Intellectual Disabilities, 2008). Except for people with an IQ less than 50, there is no relationship between intellectual disability and parental fitness (Benjet, Azar, & Kuersten-Hogan, 2003). Article 23 of the United Nations Convention on the Rights of Persons with Disabilities recognizes the right of all people with disability to marry and make a family; it calls for measures “to eliminate discrimination against persons with disabilities in all matters relating to marriage, family, parenthood, and relationships”(United Nations, 2006). The U.S. Supreme Court also has recognized marriage, procreation, and child rearing as fundamental rights (Obergefell v. Hodges, 576 U.S.___ (2015)., n.d.). With appropriate resources, people with intellectual disability can successfully fulfil parenting roles (The Arc, n.d.; The Association for Successful Parenting, n.d.).

For some people with intellectual disability who want to have children but are coerced into contraception or abortion, the current selective anti-abortion legislation in some U.S. states may appear to help ensure their right to bear children (Center for Reproductive Rights, 2017). However, solving the barriers to parenthood faced by women with intellectual disability does not necessitate legislation that limits reproductive rights in all other cases. Discussion around recent legislative actions to dramatically limit access to, or outright ban, abortion, such as Alabama’s Human Life Protection Act of 2019 (“H.R. 490 Heartbeat Protection Act of 2019,” n.d.), has reintroduced the concepts of eugenics and the legacy of discrimination towards people with disability, using these arguments to justify restrictions on reproductive choice. Policymakers behind such legislative action describe abortion of potential offspring with disability as perpetuating the goal of the eugenics movement to decrease the prevalence of people with disability (Bagenstos, 2020). They suggest that legislation supporting abortion rights poses a threat for people with disability to be born and contribute to society.

In a controversial (Rosenberg, 2019) statement about the U.S. Supreme Court’s ruling on two abortion laws, Justice Clarence Thomas argued that “abortion is an act rife with the potential for eugenic manipulation”(Thomas, n.d.). However, disability rights advocates have countered that disability civil rights arguments are being misused to support states’ prohibitions against abortion (Smith, 2019). Data collected by the Guttmacher Institute shows that prenatal diagnosis of disability is not a major factor when choosing an abortion (Finer, Frohwirth, Singh, & Moore, 2005). More importantly, fundamental principles underlying both the disability civil rights and reproductive rights movements are bodily autonomy and self-determination (Center for Reproductive Rights, 2017). Though anti-abortion legislation can protect some people with disability from coercive practices that restrict their right to have children, such legislation ultimately seems less intent on ensuring the rights of women with disability and more on restricting autonomy and the ability of all women to make their own reproduction choices. Instead, other initiatives, such as improvements in physician training, can ensure the rights of women with intellectual disability without legislation that limits reproductive choices for all women.

Limitations

Our findings have important limitations, notably concerning generalizability to physicians across the U.S. and internationally. Our larger study looked across disability types and general disability accommodation considerations rather than focusing specifically on providing sexual and reproductive health care to women with intellectual disability, preventing a comprehensive inquiry on this topic. Nevertheless, all themes described here represent salient concerns that participants raised concerning women with intellectual disability and thus have immediate implications for clinical practice. Finally, for the focus groups, the video technology platform allowed us to observe agreement among participants (e.g., via head nodding or refraining from verbal objections), which was important for assessing interpersonal dynamics around sensitive issues. We noted, with interest, that other focus group participants did not challenge potentially controversial statements, such as about use of hysterectomy and sterilization, made with seeming ease and assurance by other participants. Failure to challenge these positions might arise from hesitance to disrupt collegial interactions among participants who did not know each other; nonetheless, their silence raises unanswered questions. Clearly, the video conferencing technology did not prevent some participants from making statements that others might find objectionable (this also happened elsewhere during the focus groups involving comments about patients with obesity). Future research could use this video conferencing technology to further explore physicians’ perceptions of specific controversies in reproductive health services for women with intellectual disability.

Conclusions

Attitudes that compromise reproductive rights for women with intellectual disability persist in our society, including in health care. Given the role of U.S. physicians in providing sexual and reproductive health for women with intellectual disability, our research raises concerns that some physicians may not fully understand the civil rights of this population, including around reproductive choices. Addressing this knowledge gap may require altering entrenched, stigmatized attitudes among practicing physicians about the rights and abilities of women with disability to achieve their reproductive goals.