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Women with Disabilities: Ethics of Access and Accommodation for Infertility Care 

Women with Disabilities: Ethics of Access and Accommodation for Infertility Care
Chapter:
Women with Disabilities: Ethics of Access and Accommodation for Infertility Care
Author(s):

Leslie Francis

, Anita Silvers

, and Brittany Badesch

DOI:
10.1093/med/9780190851361.003.0013
Page of

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date: 30 July 2021

Women with disabilities who have difficulty becoming pregnant may face not only the typical challenges of infertility but also societal barriers relating to their disabilities. In this chapter, we describe barriers encountered by these women, including legal issues, training and attitudes of physicians, and insurance coverage and ability to pay. Moreover, structural issues encountered by these women include lack of adaptive equipment, inexperience of providers in treating these patient populations, and lack of access to health insurance coverage for infertility care. Further, common but erroneous perceptions—widely shared among not only providers but also the public more generally—are that women with disabilities are less interested in sexuality and less likely to flourish through motherhood. They may be stereotyped as less capable of carrying pregnancies or raising children, and as being riskier patients overall. Encountering expressions of such disability-targeting opposition to their pursuit of biologic reproduction may damage their determination that overcoming these problems to achieve a successful outcome to pregnancy will be worthwhile.

Some commentators claim that the current situation is not unjust, on several grounds: that infertility care for women with disabilities may raise medical or social issues that infertility care for other women does not, and that no one can justly claim infertility care as a basic healthcare need. In this chapter, we explore the assumptions that underlie problematic judgments about fertility treatment for women with disabilities and present an account of reasonable accommodation in infertility care for women with disabilities who seek to form families by experiencing biologic reproduction themselves. Our aim is to indicate how unnecessary barriers to their doing so can be reduced.

Women with Disabilities and Fertility Care: Experiences and Obstacles

Significant numbers of women with disabilities become pregnant each year. Estimates are that over 160,000 women with chronic physical disabilities become pregnant each year in the US1 and that 9.4% of pregnant women in the UK are women with disabilities.2 Reportedly, the first North American clinic offering specialty care for women with mobility impairments opened in Toronto in 2017.3 These figures are at best estimates, however, and the interests and needs of this patient population may be far greater, as estimates are that 10% of women of reproductive age have disabilities.2

One of the significant problems in discussing reproductive care for women with disabilities is the limited evidence available about women with disabilities and their reproductive care. As of our writing of this chapter, this evidentiary gap is garnering significant attention. The US National Institute of Health (NIH) Eunice Kennedy Shriver National Institute of Child Health and Human Development has recently issued a call for proposals under the NIH small grants program, a call aimed to address the paucity of data on pregnancy in women with disabilities.4 Researchers affiliated with the Lurie Institute for Disability Policy at Brandeis University are engaged in extensive study of reproductive care for women with disabilities.5 Our analysis in this chapter, however, is perforce limited by the evidence currently available. Beyond limited knowledge, other barriers to reproductive care for women with disabilities include inadequate laws and enforcement of even these laws, attitudes of family and others who encounter them, physician knowledge and attitudes, and insurance coverage.

In the US under the Americans with Disabilities Act (ADA), physicians’ offices and hospitals are public accommodations.6 Such facilities serving the public are required not to discriminate against persons with disabilities “in the full and equal enjoyment of the goods, services, facilities, privileges, advantages, or accommodations” they provide.7 It is discrimination to deny individuals with disabilities participation in or the benefit of these services on the basis of disabilities.8 It is also discriminatory to afford, based on disability, disparate opportunities to benefit from services.9 Such discrimination includes the imposition of eligibility criteria “that screen out or tend to screen out an individual with a disability from fully and equally enjoying any goods, services, facilities, privileges, advantages, or accommodations, unless such criteria can be shown to be necessary.”10 It is discrimination to fail “to make reasonable modifications in policies, practices, or procedures, when such modifications are necessary to afford such goods, services, facilities, privileges, advantages, or accommodations . . . unless the entity can demonstrate that making such modifications would fundamentally alter the nature of the good.”11 It is also discrimination to fail to take necessary steps to avoid differential treatment of people with disabilities because of the absence of auxiliary aids and services.12

These ADA standards are significant, and they have been enshrined in law since 1990. More recently, they have been joined by the Affordable Care Act § 4203,13 which requires that standards be set for accessible medical equipment, including diagnostic equipment. Yet evidence remains that healthcare providers often fail to meet these antidiscrimination requirements.14

Physicians’ lack of training, limited experience with women with disabilities, and discouraging attitudes also pose problems for women with disabilities who seek reproductive care. Studies from the UK, Sweden, and the US have begun to reveal the impact of experience and attitudes on the pregnancy experiences of women with different types of disabilities. For example, a UK study using data from 2015 indicates some significant differences in the care, birth, and postnatal experiences of women with disabilities.15 Women with disabilities were less likely to feel involved in their care, less likely to have a choice about delivery location (although some of this variance was due to medical conditions), and less likely to receive help in breastfeeding. Women with disabilities were also more likely to report being spoken to in a way they could not understand; this was particularly true for women with learning disabilities or sensory impairments. Women with sensory disabilities also were less likely to access prenatal care before 12 weeks’ gestation. This study emphasizes the importance of recognizing the differences in experiences of maternity care of women with different types of disabilities. To take another example, a qualitative study from Sweden indicates that women with intellectual disabilities encounter mixed reactions from partners and relatives who learn about their pregnancies, fear losing custody of their children, and may be reluctant to disclose their pregnancies because of these fears.16

Several recent US studies by a group from the Lurie Institute for Disability Policy at Brandeis look at a variety of aspects of the experience of women with disabilities in healthcare. One study examines perceptions of women with mobility impairments; these women report being met with curiosity, hostility, concerns about costs, and concerns about adequacy as a parent.17 These women were often asked how they got pregnant, with questioners apparently assuming that they were either uninterested in sex, incapable of it, or the victims of exploitation or rape. Another study from the same group reports that when women with mobility impairments became pregnant, their family members expressed negative reactions, worried about their safety, and questioned their parenting capability.18 This study recommends improved education of family members and support for women with physical disabilities during and after pregnancy.18 In the case of genetic conditions, this study also reports family concerns that the condition would be transmitted to the offspring; the women reported taking offense when relatives celebrated the birth of an unaffected child.18 Participants in a related study also reported the importance for women with disabilities of self-advocacy and peer support, including internet resources.19

Training and experience of healthcare providers is another issue faced by pregnant women with disabilities. A qualitative descriptive study by the Lurie Institute group (interviews with 14 clinicians) reported clinicians had no training in caring for obstetrical patients with mobility impairments.20 Many of those interviewed had not planned to provide this kind of care but were led to do so by a request from someone they knew, because of partners, or because of expectations in their practice setting. Several stated that their patients were their best teachers. They also became teachers for other providers. They reported finding the experience of caring for this population deeply rewarding. Negative experiences involve not the patients themselves but systems issues: lack of equipment, tendency of others to view all of these patients as being at high risk, and lack of continuity with other providers.

Ability to pay for infertility care is a further issue. Estimates are that approximately 12% of US women of childbearing age have received infertility care.21 Insurance payment for this care is variable, however, depending on the type of coverage. Medicaid is the source of coverage for 25 million adult women in the US today; roughly two-thirds of these women are between the ages of 19 and 49.22 Medicaid typically covers contraceptive services and pregnancy; pregnant women come under one of the coverage categories even in states that have not participated in the ACA Medicaid expansion.22 Medicaid pays for nearly half of all births in the US; coverage rates are highest in the states across the southern tier of the US.22 According to a 2016 study, no state Medicaid programs provide fertility treatment for either women or men.23 Although a number of states do cover diagnostic testing that can reveal the explanation for infertility, in some of these states the testing is only covered if it is for reasons other than infertility.23

For women with other forms of insurance coverage, the situation is somewhat better but far from ideal. Medicare, which may cover women or men who are permanently disabled if they meet eligibility criteria, covers “reasonable and necessary services associated with treatment for infertility.”24 Medicare currently covers just over 900,000 US women of reproductive age (19 to 44).25 Employer-provided insurance, which is the coverage source for more than half of US women of childbearing age, is required to cover some forms of infertility treatment in 13 states, but some of these mandates do not include in vitro fertilization (IVF).26 Coverage for veterans includes some infertility care; since 2017, IVF has been covered for certain veterans who have a service-connected disability that necessitates its use.27

Ethical Arguments

Providers may raise several different concerns about offering reproductive care to women with disabilities. These concerns include the provider’s lack of education or competence to provide the care, potential risks to the woman of receiving particular types of care or of carrying a pregnancy and giving birth, the inability of the woman to give informed consent, potential risks to any offspring, costs of care, inability to pay for care, and the woman’s ability to raise a child and especially to keep it safe. In this section, we argue that there is at best limited and partial justification for many of these concerns, especially in the context of background injustice. In analyzing these arguments, it is also critical to take into account differences among types of disabilities as well as differences among particular women.

A fundamental starting point of any discussion of justice and disability is the recognition that important aspects of disability are social.28 Disability is a difference in the ability to function, but ability to function is as much a matter of the design of a world and its social organization as it is of the physical and mental differences among the people in that world. A woman with a spinal cord injury, for example, may be unable to climb onto an examining table that cannot be adjusted, when with adjustable heights she could easily move herself onto the table. A woman with intellectual disabilities may be able to manage aspects of parenting in structured social circumstances that she would not be able to manage in situations lacking these structures.29 People with psychiatric disabilities may need mental health services that address their ability to function as parents.29 How to take into account the interplay between bodies and minds and the social worlds they inhabit poses complex ethical questions that are core to the discussion in this section of the chapter.

Physician Competence

It is unethical for physicians to treat patients when they lack the ability to deliver care competently. However, this statement hides questions about whether it may be unethical for physicians to lack certain care competencies or skills in treating certain kinds of patients or in offering certain types of care. Whether this is so depends on factors that include the training reasonably available to physicians; data from the Lurie Institute described in the previous section20 indicate that training programs for many physicians do not include disability-related education. A 2009 report on the status of healthcare for individuals with disabilities in the US identified lack of education of healthcare providers about disability as a root cause of existing disparities.30 This deficiency is not confined to the US, as physicians in a UK-based study “admitted that they had relatively little exposure to adult disability in medical school or residency training.”31 The effects of this lack of training and experience in preparing providers to care for individuals with disabilities are also not limited to general medical practice. The paucity of training for medical professionals specifically in reproductive healthcare for women with disabilities often results in women encountering “providers who lack disability-related training or sensitivity and/or fail to recognize the woman as a person with sexual and reproductive health care needs.”32

Research from the Lurie Institute, however, also indicates that despite a current gap in formal training experiences, many physicians do have the opportunity to learn from colleagues in their practice settings or from patients themselves.20 Physicians should be expected to take advantage of these opportunities when they are readily available, especially when the absence of knowledge is widespread and adversely affects patients’ ability to access needed care—that is, when they are providing care in a context of more general injustice. Fortunately, as the Lurie Institute study also indicates, physicians on the whole are willing to do so and find the ability to offer such care deeply satisfying.20 Another study sounds a cautionary note, however. When researchers developed a curriculum on care for people with disabilities33 and tested it, they found that although attitudes of medical students generally were improved by familiarity with patients with disabilities, a small proportion of male medical students exposed to the curriculum appear to have developed increasingly negative attitudes toward people with disabilities.34 These negative attitudes included perceptions that people with disabilities expected special treatment, resented people without disabilities, and felt sorry for themselves.34 Moreover, even if not all specialists in the various aspects of reproduction learn to treat women with disabilities, healthcare systems should be expected to provide referrals to experts who do. Finally, the medical education system also must work toward providing current and future trainees with educational experience that will equip them to provide just reproductive care to women with disabilities. We return to this need in the final section of the chapter.

Physician Choice

In the US at least, physicians are legally permitted to make choices about the patients they wish to treat. So long as they do not abandon patients, they are also legally permitted to discontinue care for particular patients. They are not, however, legally permitted to refuse to treat people in certain discriminatory ways—for example, because of their race, their sex, or their disability. Nor it is ethical for them to refuse to treat based on characteristics such as disability. Histories of injustice matter here; if all that were at stake in a particular physician choice was that one patient needed to get a different physician, although the patient might be disappointed, this is not an issue of systemic injustice. On the other hand, if no other physicians are available with the skills needed to treat the patient in question, or if more generally patients of that type have difficulty in accessing needed care because physicians refuse to treat them, there would be a significant problem of justice.

A major difficulty in determining whether there are issues of justice when physicians decline to treat patients lies in identifying reasons why the care was denied. In many cases, physicians might have mixed motives. For example, the physician might both sincerely believe that he or she is not capable of giving care to a particular patient and react to the patient based on negative stereotypes. One potentially important motive in the mix is fear of liability; physicians may express the concern that people with certain kinds of disabilities are more likely to have adverse outcomes of care and thus more likely to affect the physicians’ care quality ratings or to sue for damages in the case of an adverse outcome.

Physician’s attitudes toward persons with disabilities might also be influenced by lack of experience in caring for women with disabilities that results in a sense of unfamiliarity and potentially reduced willingness to care for this population. As we have discussed, there is a known deficiency in medical education in providing adequate experience and training related to disability. Tervo35 evaluated the attitudes of both US and Canadian medical students toward individuals with disabilities and their comfort in difficult clinical scenarios involving disability. This study also examined what factors, including background in disability, were associated with more positive attitudes toward people with disabilities and more comfort with the clinical scenarios. One factor that stood out was gender: male medical students had poorer attitudes and more behavioral misconceptions about patients with disabilities than female medical students did.35 Other studies have also demonstrated an association between lack of experience and more negative attitudes toward patients with disabilities, which could affect willingness to care for these patients.36,37 A finding of particular relevance to our discussion is that physicians were less likely to perceive people with disabilities as sexually active and thus in need of reproductive care.38

In addition to unfamiliarity and fear of litigation, surveys have indicated that physicians perceive patients with disabilities to be more complex, and therefore to require greater time and more services than patients without disabilities.38 Such perceptions pose a risk that providers will be less willing to treat patients with disabilities overall.

Risks to the Woman

Physicians ethically may decline to provide care when they believe doing so would be medically inappropriate. One reason why care might be deemed inappropriate is the judgment that the risks outweigh the benefits. The American Society for Reproductive Medicine (ASRM) advises physicians that they may decline to provide infertility care when they believe risks to the patient are too high for treatment to be ethical.39 The same ASRM ethics opinion also makes clear that physicians may provide care for women at elevated risk, provided the women are fully informed and receive counseling if necessary.39 The opinion also cautions that decisions should be made in a medically objective, firmly based, and unbiased manner. There is reason for concern in this respect, however, as evidence indicates that physicians are likely to inflate the risks of pregnancy for people with disabilities. Conversely, physicians also may be likely to underestimate the likelihood that women with disabilities might be desirous of sex, sexually active, or distressed by infertility.38 This assumption is mistaken, however; Shandra40 demonstrated that women with disabilities were equally likely to desire motherhood and to intend to have children as women without disabilities. Such data affirm that if physicians make assumptions surrounding patients’ reproductive goals, the care they provide is at risk of not being congruent with patient priorities.

Inability to Give Informed Consent

Another concern about reproductive care and women with disabilities is whether they are able to give informed consent. These concerns may be particularly acute for women with intellectual disabilities or for women with mental illness. This is an area, however, in which it is especially important to be aware of the differences among types of individuals and among individual women.41,42 One frequently raised concern is that women with intellectual disabilities may not fully understand the risks and benefits of treatment. However, depending on the extent and type of intellectual disability, these women may be able to understand and wish to pursue values that are important for them, such as the desire to have children. The sordid history of eugenics in the US and elsewhere43,44,45 and the infamous never-overruled decision of the US Supreme Court upholding sterilization, Buck v. Bell,46 are imperative cautionary reminders of the risks of too-ready assumptions of incapacity. When people do have limited understanding, the Convention on the Rights of Persons with Disabilities (CRPD) Article 12 asserts the full legal personhood of people with disabilities and requires that states parties provide appropriate measures of support to enable this achievement.47 Although not without critics,48 supported decision making is one important method for achieving legal personhood. Rather than substituting a guardian or other surrogate for the intellectually disabled individual, supported decision making advocates providing various kinds of assistance that help people with disabilities articulate their current values and choices.49

Risks to Offspring

Concern about risks to offspring is another reason why providers might decline to provide infertility care to women with disabilities. Some of these risks might be associated with the pregnancy itself and others with later childrearing ability. What data there are indicate that providers may overestimate risks of pregnancy in women with disabilities because of their lack of training and experience. On the other hand, some conditions, such as Turner syndrome, do increase the objective risk to both mother and child. In such cases, as described above, ASRM39 advises that physicians may decline care if they believe the risk is too great. ASRM50 also judges that providers may ethically decline care in the case of “well-grounded reasons that . . . patients will be unable to provide minimally adequate or safe care for offspring.” This ethics opinion cautions that any such judgments must be made in a manner that is nondiscriminatory. Organizations such as the National Council on Disability29 and commentators51 have documented the history of misjudgments of the ability to parent among persons with disabilities. Cureton52 points out that although people with disabilities may parent differently, this does not mean they parent less well. Misinformed judgments and physicians’ ill-informed fears about a woman’s ability to parent might influence the initial counseling she receives regarding pregnancy management and could even result in an “unwarranted recommendation for termination of a desired pregnancy.”53

Also relevant here are the problems of justice raised by inadequate social arrangements and services that may threaten, or even result in, parents with disabilities losing custody of their children when they otherwise would have been able to care for them successfully.29 Examples are extensive of failures to provide parenting instruction, counseling, assistive devices, or a variety of in-home services that could enable people with disabilities to parent successfully. Examples are also rife of child protective services failing to take into account arrangements with partners, family, or friends that also enable successful parenting in cases of disability.

Conscientious Objection

Some physicians may have personal objections to providing forms of healthcare such as contraception or abortion. These refusals are themselves controversial, especially when they involve failures to refer to other providers, when the situation is emergent, or when other providers are not available.54 It is difficult to see, however, why these reasons of conscience would single out people with disability for refusal of care.

Ability to Pay

Another reason physicians may not offer infertility care to patients is their inability to pay. As we have described, insurance coverage for infertility is patchwork at best. The option of paying privately may be beyond the means of many people with disabilities; according to Census Bureau data, the poverty rate for people with disabilities is nearly 30%, and women with disabilities have the lowest labor force participation rate of any demographic group.55 ASRM56 advises physicians that they should try to address and lessen barriers to reproductive care, but this advice is precatory only. While it seems reasonable to advise physicians to attempt to improve the situation with respect to access to care, and to attempt to lower the costs of care, it does not seem so to expect physicians to care for women who simply cannot pay.

Whether coverage for infertility treatment should be paid for through shared social costs—by one form of insurance or another—remains controversial. Politically, the US has a long history of refusing to pay for forms of care deemed objectionable, especially abortion;57 this position has gained recent ascendancy for contraceptive care as well.58 Others criticize sharing the costs of infertility by arguing that the desire to have children, while perhaps an important goal for many, is not a matter of health. The decision by the Veterans Health Administration to cover infertility care, including IVF for some veterans whose needs were service related, was lauded as expressing respect for the sacrifices these veterans had made.59 On the other hand, ASRM56 emphasizes the importance to many of family formation, even judging that the creation of a family “is a basic human right.”

Reasonable Modifications and Accommodations

The concept of “reasonable modifications” comes from the specification of what constitutes discrimination in US law. Under the ADA, as we have described, it is discrimination for a public accommodation to fail to make reasonable modifications in policies, practices, or procedures needed to allow people with disabilities to enjoy the service on equal terms.1 It is a defense to a discrimination claim if the entity can demonstrate that making such modifications would fundamentally alter the nature of the good.60 These requirements apply to physicians’ offices, offices of other healthcare providers, healthcare facilities, private home care agencies, adoption agencies, daycare centers and schools, places of entertainment, and many other private-sector facilities serving parents with disabilities or their children.61 It is also discrimination for public services to fail to make such modifications.62 And it is discrimination for employers to fail to make reasonable accommodations when requested by people with disabilities.63 In this section, we detail some modifications and accommodations that should be instituted regarding reproductive care for people with disabilities.

Medical education is a public service when provided by state universities and a public accommodation when provided by private universities. Including the experience of caring for people with disabilities could be a reasonable modification in medical education. As discussed above, physician competence and physician choices augment barriers for women with disabilities seeking fertility and reproductive care. A lack of previous experience working with individuals with disabilities and inadequate training in medical education have been shown to correlate with physicians feeling less prepared, uncomfortable, and reluctant to provide care for this population.33,34,35,36,37,64,65,66 Interventions to reduce these barriers could therefore be targeted at improving medical education surrounding care for individuals with disabilities. There is currently a lack of data supporting specific curricular models in medical education to address this gap in training, but it is an active area of research and one proposal has undergone initial evaluation.33,34

The accreditation agencies that determine eligibility for federal funding for medical education and residency training programs have core curriculum requirements that must be met by programs in order to receive accreditation and funding. Unfortunately, disability competency is not currently a core curriculum requirement mandated by the accreditation agencies for medical training programs.30 One step to improve medical training and better equip physicians to care for women with disabilities would be for accrediting agencies to include disability competency in their requirements.

In addition to reducing barriers to competent care through improved medical training, the medical community should work to minimize physical barriers in clinical settings. There are straightforward steps that medical practices can take to comply with the ADA and accommodate patients with disabilities. General accommodations include ensuring adequate accessible parking and accessible pathways through the clinic and into the exam room, including an appropriately sized entry door with adequate width, as well as space once inside the exam rooms for transfers. Clinics and hospitals must also have accessible examination equipment available such as accessible exam tables and lifts. To provide women with disabilities adequate access to reproductive care and fertility treatments, clinics need to implement additional adaptations, such as having padded leg supports available instead of typical stirrups for gynecological exams. Detailed information about these adaptations and other necessary accommodations for patients with mobility disabilities can be found on the website of the US Department of Health and Human Services.67 Providers should also have means of communicating physician recommendations that are accessible to persons with various disabilities. This might include having instructions available in Braille, large print, audiotape, and/or on a computer disk, instructions accessible to individuals with only primary-school-grade reading ability, and sign language interpretation for physician visits.

In reducing barriers to reproductive and fertility care for women with disabilities seeking pregnancy and motherhood, it is important not to forget that accessible care will be necessary not only during the preconception and prenatal periods but also longitudinally for the mother and child after birth. This has implications not only for adult medicine and obstetrics and gynecology clinics but also for pediatric practices so that mothers with disabilities can be active participants in their children’s medical care. Reasonable accommodations for pediatric practices must go beyond physical adaptations to the clinic setting. Involvement of multidisciplinary professionals can optimize care and minimize barriers. For example, occupational therapists can work with families and recommend accessible equipment for parents such as accessible cribs for use by parents with disabilities. Social workers can connect women with resources for assistance with childcare and programs for parental training. This may be particularly important in supporting mothers with intellectual disabilities.

In their chapter “Supporting Parents with Disabilities and Their Families in the Community,” the National Council on Disability29 emphasizes aspects of disability as a societal construct. Recognition that parents without disabilities require and utilize many supports to raise children—among them daycare, tutoring, or grandparent involvement—on a regular basis calls into question why services that support the needs of parents with disabilities in caring for their children are not more readily available. Unfortunately, significant barriers exist in the US currently in terms of long-term support of parents with disabilities, as government-funded personal assistance services do not allow attendants who are assisting parents with disabilities with their own care to provide help in caring for their children.29 This is not the case in other countries, including Canada and Sweden, where similar government-supported services for individuals with disabilities can be used to assist with the care of a child. The ADA likely would not be interpreted to mandate this change, as the change from care for the disabled person himself or herself to care for a dependent child could be considered a fundamental alteration in the service provided. On the other hand, assisting the parent with a disability to participate in his or her children’s activities—such as by mobility assistance to enter a playground—could be considered a reasonable modification of a public service or public accommodation. Advocating for policy change in this area would be a step toward reducing barriers for not only mothers but also fathers with disabilities in the pursuit of family relationships. Such policy changes might inadvertently decrease the bias of medical providers toward providing fertility care to women with disabilities as well as encouraging women who desire pregnancy but are deterred by attitudes of providers and societal barriers to seek fertility care.

Uncertainty about their ability to keep custody of their children is an ongoing concern for parents with disabilities.16,29 In one notorious recent case, blind parents had their two-day-old daughter taken into state custody on the basis of initial awkwardness at breastfeeding—hardly an unusual experience for any new parents. The state mistakenly presumed that the parents were unfit and only permitted supervised hour-long visits two or three times a week for the child’s first 2 months, until the parents succeeded in challenging their daughter’s placement in foster care.68 In another recent case, an Oregon couple, both of whom have mild to moderate cognitive impairments, have been fighting the state for custody of their two sons; although they have regained custody of the younger boy, the older child remains in state custody because of concerns that he has needs beyond their parenting capabilities.69,70 One important recent court decision has held that it is a violation of the ADA for the state to fail to give accommodations to parents with disabilities before instituting provisions to terminate parental rights.71 While not within the immediate domain of healthcare, such modifications in child custody practices are critical adjuncts to the parenting experiences of people with disabilities.

The possibility of obtaining reasonable accommodations in employment may also be important for women with disabilities contemplating pregnancy and parenting. As least two pathways are available for women with disabilities to claim accommodations for pregnancy and parenting. First, she might need accommodations because of the nature of the pregnancy and birth process. Most courts hold that normal pregnancy and childbirth is not a disability for purposes of the ADA, because it is not a physical or mental impairment that substantially limits a major life activity. Complex pregnancies or births, however, may be impairments, for example if they require substantial time on bedrest or longer recovery times postpartum. Second, she might need accommodations for pregnancy or parenting because of the nature of her underlying disability.

In both of these types of cases, the woman may claim accommodations such as time off work, a modified schedule, or modified responsibilities. These accommodations must be reasonable and would be subject to the qualification that they not impose an undue hardship on the employer. Accommodations are not reasonable if the employee remains unable to perform essential job functions; an example might be a teacher who cannot be in a classroom for a significant portion of the school day. Requested accommodations would be an undue hardship if they would require other employees to take over responsibilities that would be a significant imposition on them. On the other hand, many courts have held that a reasonable period off work, with a clear plan for the employee’s return, is not an undue hardship in many employment situations. Schedule adjustments that would give an employee with a disability additional time needed to fulfill parental responsibilities might also be judged reasonable accommodations under Title I of the ADA.

As we emphasized at the outset of this chapter, disability is importantly a matter of social context. Encouragingly, the social context is changing for parents with disabilities. Independent living organizations such as Through the Looking Glass have been catalysts for these changes. They have contributed to research on essential supports for physically disabled mothers of young children.72 Universal design in equipment for children such as cribs, car seats, feeding devices, tracking devices, and play materials is increasingly available.73,74 The modifications we have suggested should be enriched by these developments.

Conclusion

For women with disabilities and their partners, pregnancy and parenting may be as important goods as they are for nondisabled people. The capability of people with disabilities to parent continues to be underestimated and poorly accommodated. Providers who treat women with disabilities need improved education and improved facilities so that this population may realize their ambitions to form families. Improvements in social services and payment structures should follow as well.

References

1. Iezzoni LI, Yu J, Wint AJ, Smeltzer SC, Ecker JL. General health, health conditions, and current pregnancy among U.S. women with and without chronic physical disabilities. Disabil Health J. 2014;7(2):181–188.Find this resource:

2. Redshaw M, Malouf R, Gao H, Gray R. Women with disability: the experience of maternity care during pregnancy, labour and birth and the postnatal period. BMC Pregnancy Childbirth. 2013;13:174. doi: 10.1186/1471-2393-13-174Find this resource:

3. Sunnybrook Health Sciences Centre. New pregnancy clinic supports women with physical disabilities. https://sunnybrook.ca/media/item.asp?c=&i=1566&f=north-american-pregnancy-clinic-disabilities. Published May 10, 2017. Accessed March 22, 2018.

4. Department of Health and Human Services. Pregnancy in women with disabilities. https://grants.nih.gov/grants/guide/pa-files/PA-17-451.html. Published August 3, 2017. Accessed March 22, 2018.

5. Lurie Institute for Disability Policy. Current projects. http://lurie.brandeis.edu/research/projects.html. Published 2018. Accessed March 22, 2018.

6. 42 U.S.C. § 12181(7)(F) (2018).Find this resource:

7. 42 U.S.C. § 12182(a) (2018).Find this resource:

8. 42 U.S.C. § 12182(b)(1)(A)(i) (2018).Find this resource:

9. 42 U.S.C. § 12182(b)(1)(A)(ii) (2018).Find this resource:

10. 42 U.S.C. § 12182(b)(2)(A)(i) (2018).Find this resource:

11. 42 U.S.C. § 12182(b)(2)(A)(ii) (2018).Find this resource:

12. 42 U.S.C. § 12182(b)(2)(A)(iii) (2018).Find this resource:

13. 29 U.S.C. § 794(f) (2018).Find this resource:

14. Pendo E. Disability equipment barriers, and women’s health: using the ADA to provide meaningful access. SLU J Health Law Policy. 2008;2:15–56.Find this resource:

15. Malouf R, Henderson J, Redshaw M. Access and quality of maternity care for disabled women during pregnancy, birth and the postnatal period in England: data from a national survey. BJM Open. 2017;7:e016757. doi:10.1136/bmjopen-2017-016757.Find this resource:

16. Höglund B, Larsson M. Struggling for motherhood with an intellectual disability—a qualitative study of women’s experiences in Sweden. Midwifery. 2013;29(6):698–704.Find this resource:

17. Iezzoni LI, Wint AJ, Smeltzer SC, Ecker JL. “How did that happen?” Public responses to women with mobility disability during pregnancy. Disabil Health J. 2015;8:380–387.Find this resource:

18. Powell RM, Mitra M, Smeltzer SC, Long-Bellil LM, Smith LD, Iezzoni LI. Family attitudes and reactions toward pregnancy among women with physical disabilities. Womens Health Iss. 2017;27(3):345–350.Find this resource:

19. Iezzoni LI, Wint AJ, Smeltzer SC, Ecker JL. Recommendations about pregnancy from women with mobility disability to their peers. Womens Health Iss. 2017;27(1):75–82.Find this resource:

20. Smeltzer SC, Mitra M, Long-Bellil L, Iezzoni LI, Smith LD. Obstetric clinicians’ experiences and educational preparation for caring for pregnant women with physical disabilities: a qualitative study. Disabil Health J. 2018;11:8–13.Find this resource:

21. Chandra A, Copen CE, Stephen EH. Infertility service use in the United States: data from the National Survey of Family Growth, 1982–2010. National Health Statistics Reports. 2014;73. https://www.cdc.gov/nchs/data/nhsr/nhsr073.pdf.Find this resource:

22. Kaiser Family Foundation. Medicaid’s role for women. https://www.kff.org/womens-health-policy/fact-sheet/medicaids-role-for-women/. Published June 22, 2017. Accessed March 22, 2018.

23. Walls J, Gifford K, Ranji U, Salganicoff A, Gomes I. 2016. Medicaid coverage of family planning benefits: results from a state survey. https://www.kff.org/report-section/medicaid-coverage-of-family-planning-benefits-results-from-a-state-survey-fertility-services/. Published September 15, 2016. Accessed March 22, 2018.

24. Centers for Medicare and Medicaid Services. Medicare Benefit Policy Manual, Ch. 15, 20.1. https://www.cms.gov/Regulations-and-Guidance/Guidance/Manuals/downloads/bp102c15.PDF. Published July 11, 2017. Accessed March 22, 2018.

25. Donovan MK. In real life: federal restrictions on abortion coverage and the women they impact. Guttmacher Institute. https://www.guttmacher.org/gpr/2017/01/real-life-federal-restrictions-abortion-coverage-and-women-they-impact. Published January 5, 2017. Accessed March 22, 2018.

26. National Conference of States Legislatures. State laws related to insurance coverage for infertility treatment. http://www.ncsl.org/research/health/insurance-coverage-for-infertility-laws.aspx. Published June 1, 2014. Accessed March 22, 2018.

27. Veterans Health Administration. Directive 1332. www.va.gov/vhapublications/viewpublication.asp?pub_id=5431. Published June 20, 2017. Accessed March 22, 2018.

28. Shakespeare T. The social model of disability. In: Davis LJ, ed. The Disability Studies Reader. New York, NY: Routledge; 2010:266–273.Find this resource:

29. National Council on Disability. Rocking the cradle: ensuring the rights of parents with disabilities and their children. https://www.ncd.gov/sites/default/files/Documents/NCD_Parenting_508_0.pdf. Published September 27, 2012. Accessed March 22, 2018.

30. National Council on Disability. The current state of health care for people with disabilities. https://www.ncd.gov/rawmedia_repository/0d7c848f_3d97_43b3_bea5_36e1d97f973d.pdf. Published September 30, 2009. Accessed March 22, 2018.

31. Claxton A. 1994. Teaching medical students about disability. Br Med J. 1994;308:805.Find this resource:

32. Mosher W, Bloom T, Hughes R, Horton L, Mojtabai R, Alhusen JL. Disparities in receipt of family planning services by disability status: new estimates from the National Survey of Family Growth. Disabil Health J. 2017;10:394–399.Find this resource:

33. Symons AB, McGuigan D, Aki EA. A curriculum to teach medical students to care for people with disabilities: development and initial implementation. BMC Med. Educ. 2009;9:78.Find this resource:

34. Symons AB, Morley CP, McGuigan D, Aki EA. A curriculum on care for people with disabilities: effects on medical student self-reported attitudes and comfort level. Disabil Health J. 2014;7(1):88–95.Find this resource:

35. Tervo RC, Azuma S, Palmer G, Redinius P. Medical students’ attitudes toward persons with disability: a comparative study. Arch Phys Med Rehabil. 2002;83(11):1537–1542.Find this resource:

36. Goreczny AJ, Bender EE, Caruso G, Feinstein CS. Attitudes toward individuals with disabilities; results of a recent survey and implications of those results. Res Develop Disabil. 2011;32:1596–1609.Find this resource:

37. Chadd EH, Pangilinan PH. Disability attitudes in health care: a new scale instrument. Am J Phys Med Rehabil. 2011;90(1):47–54.Find this resource:

38. McColl MA, Forster D, Shortt SED, et al. Physician experiences providing primary care to people with disabilities. Healthcare Policy. 2008;4(1): e129–e147.Find this resource:

39. American Society for Reproductive Medicine. Provision of fertility services for women at increased risk of complications during fertility treatment or pregnancy: an Ethics Committee Opinion. Fertil Steril. 2016;106(6):1319–1323.Find this resource:

40. Shandra CL, Hogan D, Short S. Planning for motherhood: fertility attitudes, desires and intentions among women with disabilities. Perspect Sexual Reprod Health. 2014;46(4):203–210.Find this resource:

41. Hall DE, Prochazka AV, Fink AS. Informed consent for clinical treatment. Can Med Assoc J. 2012;184(5):533–540.Find this resource:

42. Appelbaum PS. Assessment of patients’ competence to consent to treatment. N Engl J Med. 2007;357:1834–1840.Find this resource:

43. Cohen A. Imbeciles: The Supreme Court, American Eugenics, and the Sterilization of Carrie Buck. New York, NY: Penguin; 2016.Find this resource:

44. Lombardo PA, ed. A Century of Eugenics in America: From the Indiana Experiment to the Human Genome Era. Bloomington, IN: Indiana University Press; 2011.Find this resource:

45. Lombardo PA. Three Generations No Imbeciles: Eugenics, the Supreme Court, and Buck v. Bell. Baltimore, MD: Johns Hopkins University Press; 2008.Find this resource:

46. 274 U.S. 200 (1927).Find this resource:

47. United Nations Convention on the Rights of Persons with Disabilities. https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities/convention-on-the-rights-of-persons-with-disabilities-2.html. Published 2007. Accessed March 22, 2018.

48. Scholten M, Gather J. Adverse consequences of article 12 of the UN Convention on the Rights of Persons with Disabilities for persons with mental disabilities and an alternative way forward. J Med Ethics. 2018;44(4):226–233.Find this resource:

49. Bach M, Kerzner L. A new paradigm for protecting autonomy and the right to legal capacity: advancing substantive equality for persons with disabilities through law, policy and practice. Law Commission of Ontario. https://www.lco-cdo.org/wp-content/uploads/2010/11/disabilities-commissioned-paper-bach-kerzner.pdf, Published October 2010. Accessed March 22, 2018.

50. American Society for Reproductive Medicine. Child-rearing ability and the provision of fertility services: an Ethics Committee opinion. Fertil Steril. 2017;108(6):944–947.Find this resource:

51. Powell R. Parents with disabilities face an uphill battle to keep their children. Pacific Standard. January 3, 2018. https://psmag.com/social-justice/parents-with-disabilities-face-an-uphill-battle-to-keep-their-children Accessed March 22, 2018.

52. Cureton A. Parents with disabilities. In: Francis L, ed. The Oxford Handbook of Reproductive Ethics. New York, NY: Oxford University Press; 2017:407–426.Find this resource:

53. Signore C, Spong CY, Krotoski D, Shinowara NL, Blackwell SC. Pregnancy in women with physical disabilities. Obstet Gynecol. 2011;117(4):935–947.Find this resource:

54. Antommaria A. Conscientious objection in reproductive health. In: Francis L, ed. The Oxford Handbook of Reproductive Ethics. New York, NY: Oxford University Press; 2017:209–225.Find this resource:

55. US Department of Labor. Issue brief: key characteristics of working women with disabilities. https://www.dol.gov/wb/resources/women_with_disability_issue_brief.pdf. Published July 2015. Accessed March 22, 2018.

56. American Society for Reproductive Medicine. Disparities in access to effective treatment for infertility in the United States: an Ethics Committee opinion. Fertil Steril. 2015;104(5):1104–1110.Find this resource:

57. Harris v. McRae, 448 U.S. 297 (1980).Find this resource:

58. Goldstein A, Eilperin J, Wan W. Trump administration narrows Affordable Care Act’s contraception mandate. Washington Post. October 6, 2017. https://www.washingtonpost.com/national/health-science/trump-administration-could-narrow-affordable-care-acts-contraception-mandate/2017/10/05/16139400-a9f0-11e7-92d1-58c702d2d975_story.html?utm_term=.074c4e29e84d. Accessed March 22, 2018.

59. Shane L. VA to start offering IVF services to veterans this spring. Military Times. January 19, 2017. https://www.militarytimes.com/veterans/2017/01/19/va-to-start-offering-ivf-services-to-veterans-this-spring/. Accessed March 22, 2018.

60. 42 U.S.C. § 12182(b)(2)(A)(ii) (2018).Find this resource:

61. 42 U.S.C. § 12181(7) (2018).Find this resource:

62. 42 U.S.C. § 12131(2) (2018).Find this resource:

63. 42 U.S.C. § 12112(b)(5)(A) (2018).Find this resource:

64. Burge P, Cleaver S, Isaacs B, Lunsky Y, Jones J, Hastie, R. Attitude of medical clerks toward persons with intellectual disabilities. J Coll Family Phys Can. 2012;58(5):282–288.Find this resource:

65. Delucia LM, Davis EL. Dental students’ attitudes toward the care of individuals with intellectual disabilities: relationship between instruction and experience. J Dental Educ. 2009;73(4):445–453.Find this resource:

66. Ruedrich S, Dunn J, Schwartz S, Nordgren L. Psychiatric resident education in intellectual disabilities: one program’s ten years of experience. Acad Psychiatry. 2007;31(6):430–434.Find this resource:

67. Department of Health and Human Services, Office for Civil Rights. 2010. Access to medical care for individuals with mobility disabilities. https://www.ada.gov/medcare_ta.htm. Published July 22, 2010. Accessed March 22, 2018.

68. Powell R. Can parents lose custody simply because they are disabled? GPSolo. 2014;31(2). https://www.americanbar.org/publications/gp_solo/2014/march_april/can_parents_lose_custody_simply_because_they_are_disabled.html. Accessed March 22, 2018.Find this resource:

69. Powell R. Parents with disabilities face an uphill battle to keep their children. Pacific Standard. January 3, 2018. https://psmag.com/social-justice/parents-with-disabilities-face-an-uphill-battle-to-keep-their-children. Accessed March 22, 2018.

70. Swindler S. In re Hicks, 890 N.W.2d 696 (Mich. App. 2016). Judge rules Oregon parents with low IQs can take youngest son home. The Oregonian. December 24, 2017. http://www.oregonlive.com/pacific-northwest-news/index.ssf/2017/12/judge_rules_oregon_parents_wit.html. Accessed March 22, 2018.

71. In re Hicks, 890 N.W.2d 696 (Mich. App. 2016).Find this resource:

72. Jacob J, Kirshbaum M, Preston P. Mothers with physical disabilities caring for young children. J Soc Work Disabil Rehabil. 2017;16(2):95–115.Find this resource:

73. Through the Looking Glass. Baby care equipment on the market. https://www.lookingglass.org/pdf/Baby-care-products-chart-TLG-9-2016.pdf. Published 2016. Accessed March 22, 2018.

74. Disabled Parenting Project. Links to adaptive parenting products. http://www.disabledparenting.com/marketplace/links-to-adaptive-parenting-products/ Published 2018. Accessed March 22, 2018.

Notes:

1. Under US law, “accommodations” are individualized adjustments to enable people with disabilities to receive the benefits of public services or to enjoy public accommodations on a par with others; “modifications” change policies or practices along lines that further access more universally.