This article serves as a resource for primary care providers to ensure equitable reproductive and sexual health care for patients with disabilities. It covers: Ensuring clinic accessibility; screening for abuse in women with disabilities and educating patients and families about safety, consent, healthy relationships, and boundaries; providing sexual health education to patients with disabilities; validating and affirming patients’ identities in their roles as sexual beings, partners, and parents;menstrual management; health maintenance screenings tailored for individuals with disabilities.
Key points
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Clinicians should adopt a universal design approach to create an inclusive clinic environment that accommodates the needs of all patients.
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Adults with intellectual or developmental disabilities face high abuse risks and should be routinely screened, especially with behavior changes, while receiving ongoing education on relationships, boundaries, consent, and safety.
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Clinicians should affirm patients’ sexual identities by fostering a safe, nonjudgmental environment, using inclusive language, normalizing sexual desires, and addressing challenges related to sexual activity.
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Clinicians should consider offering menstrual suppression if it aligns with the patient’s goals, such as contraception, prevention of anemia, and reduction of cyclical behavioral changes or catamenial seizures.
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People with disabilities face disparities in routine health maintenance screenings. Clinicians should select the most accessible screening methods for each patient and their family or caregivers.
| AAP | American Academy of Pediatrics |
| ASL | American Sign Language |
| COC | combined oral contraceptive |
| DHH | deaf or hard of hearing |
| DMPA | depot medroxyprogesterone acetate |
| DS | Down syndrome |
| IDD | intellectual or developmental disability |
| STI | sexually transmitted infection |
| PWD | persons with a disability or disabilities |
| VTE | venous thromboembolism |
Reproductive and sexual health of individuals with disabilities
A total of 61 million Americans live with a disability (1 in 4 people). Unfortunately, many do not receive equitable reproductive and sexual health care. A 2021 report found that 60% of physicians report an inability to provide the same quality of care to persons with disabilities and those without disabilities. Persons with a disability or disabilities (PWD) experience disparities in screening and preventative services, cancer diagnosis and treatment, reproductive and pregnancy care, communication with health care professionals, and overall satisfaction with care.
This article covers key topics that all clinicians should be familiar with when caring for individuals with various types of disabilities (physical, sensory, intellectual, and others). This volume is focused on women’s health; however, patients may be trans women, trans men, nonbinary, agender, or have other gender identities ; therefore, the authors use inclusive, gender-neutral language throughout this article.
Accessibility
Only half of physicians strongly agree that they welcome PWD into their practice. To create an inclusive environment that provides accommodations for patients with specific needs, we suggest a universal design approach. Table 1 highlights recommendations and suggested implementation strategies to create an accessible, inclusive clinic environment.
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| During the Visit |
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Screening for Abuse
Adults with IDD are 2.5 to 10 times more likely to experience abuse than those without IDD and often face repeated incidents of abuse. When abuse occurs, individuals with IDD may display behaviors that are harmful or dangerous to themselves, others, or the environment such as self-injury, aggression, outbursts of anger, and irritability. Therefore, abuse should be on the differential when a person with IDD presents with a new or changed behavior.
Providers should routinely screen individuals with IDD for abuse (physical, sexual, exploitation, neglect) by asking questions such as
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“Is anyone hurting you?”
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“Is anyone mean to you?”
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“Has anyone touched your body without your permission?” (If so, where?)
It is best to ask these questions when the patient is alone. If the patient has any known comfort aids, be sure that they have those items present with them. Screening for abuse can provide a segue into education about sexual health and healthy relationships/boundaries, discussed in detail later.
Safety and Consent
Safety and consent are important concepts for all vulnerable individuals to understand. While there is an expectation that all PWD will have the support of an identified safety person, crimes committed are frequently by those with whom patients feel safe. Discussing safety and consent provides patients with the tools necessary to make informed decisions and accurately report an adverse event if necessary. Providers should ensure that patients understand consent ( Box 1 ).
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Ask if the patient can identify their private areas using accurate anatomic terms.
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Ask if anyone has touched these areas and discuss scenarios where touching might be necessary for hygiene or medical reasons (eg, caregivers, parents, aides, partners).
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Explain that the patient must give permission for anyone to touch them, including during medical visits and examinations.
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Ask what the patient would do if someone touched them without permission.
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Ask who the patient trusts to report concerns about their safety.
No, Go, and Tell can effectively educate individuals aged 3 years and up about self-protection and abuse reporting by explaining body parts and who is allowed to touch them ( Box 2 ). “No” teaches individuals to use their words or actions to stop unwanted behavior or leave a situation. “Go” encourages individuals to escape or run away if they are in danger. “Tell” instructs individuals to report any issues to a trusted adult, caregiver, or support person.
Here is how No, Go, and Tell can be used to explain body parts and touch:
- 1.
No : Teach patients that they have the right to say “no” to any unwanted touch. Emphasize that their personal boundaries must always be respected, and they have the right to refuse any touch or action that makes them uncomfortable.
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Go : Explain that if someone touches them inappropriately, they should move away or get out of the situation. This helps them understand that they can take action to protect themselves.
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Tell : Encourage patients to inform a trusted person if someone touches them inappropriately. This could be a caregiver, family member, or another trusted adult. Make sure that they understand the importance of communicating any concerns or uncomfortable experiences.
- 1.
Healthy Relationships and Boundaries
A healthy relationship is one that feels safe, respects boundaries, and is collaborative. Understanding the nature of a healthy relationship is important for PWD to ensure physical and emotional safety. A tool called Circles can be used by any member of the health care team to teach people with IDD and their families about different relationship structures and support continuing education around boundaries at home.
Circles is performed by creating a visual, using concentric circles, to outline different relationship structures and contexts ( Fig. 1 ). The person who is learning is in the center of the circle, the people closest to this individual outside of that circle, acquaintances outside of that circle, and strangers outside of that circle.
Creating this visual helps foster conversation about the role that various individuals play in a patient’s life, and how their role influences appropriate boundaries. For example, with the patient’s consent, only those in the innermost circle—closest to the patient—should hug them. Acquaintances might support a patient, but it would not be appropriate for them to hug or touch the patient in any other way.
Sexual Health Education
Sexual health education is essential for PWD to understand their bodies and establish appropriate boundaries to prevent abuse. Sexual health education should be introduced early, before puberty, and frequently revisited at well visits.
Physicians should ask patients how they learn best—whether through visual aids, listening, reading, or other methods. Visual aids and videos can be particularly beneficial. Resources like Amaze.org and Teachers Pay Teachers offer helpful tools for various learning styles.
Consent is a crucial component of sexual health education. Providers should verify that patients understand consent (see Box 1 ) before conducting any sensitive examinations. Visual aids can help clarify what will be done during these examinations, supporting the patient’s comprehension and comfort.
Validate and Affirm Patient Sexuality
PWD have a history of being regarded as nonsexual beings. Women with disabilities have also reported feeling that their roles as lovers, partners, and mothers are unrecognized or ignored by clinicians. When these identities are acknowledged, clinicians may still minimize or deny patients’ experiences.
Clinicians can validate and affirm patients by doing the following.
Create a safe, nonjudgmental environment and relationship
Many PWD, particularly those in marginalized populations who have faced discrimination and adverse experiences, feel unsafe communicating about sexuality or intimacy with their health care providers. It is important to show patients that their experience with you will be different.
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Begin by ensuring that patients may ask any questions they may have, that no question or topic is off-limits.
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If a caregiver is present, give the patient an opportunity to speak privately with the provider.
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Let the patient know that you are there to help them find solutions to their challenges. Come from a place of respect.
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Do not force anything outside of their comfort zone. Meet the patient “where they are!”
Use inclusive language
- a.
Do not make assumptions. Ask patients for the language/vocabulary that they use to refer to themselves and their bodies. This may be in reference to sexual orientation, gender identity and pronouns, their anatomic parts, and their disabilities but may expand further.
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Use preface statements when approaching a topic that can be perceived as sensitive and provide your rationale for asking them. For example, “I’m going to ask you some questions that may be a bit sensitive and am doing so because I want to be respectful and understand your specific needs.”
Normalize sex, sexual desires, sexual/body exploration, and masturbation
PWD of all types are commonly infantilized, and their identities as sexual beings are seen within that context by those around them, including health care professionals and families/caregivers. Sexuality and masturbation are healthy and natural parts of the human experience, regardless of an individual’s disability status. If patients want to explore this part of their identity, providers should encourage them to do so in safe and healthy ways, free of shame. Masturbation should be done in a private setting with body-safe tools and proper hygiene to avoid harm. Understanding sexual health and masturbation is important for the purpose of having the ability to consent, maintain safety, understand boundaries, and explore one’s own pleasure.
Address common physical challenges related to sexual activity
- 1.
Limited mobility
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Disability-related limitations may include difficulty or inability to get into and maintain any number of sexual positions. Providers should help patients explore creative options, including assistive devices like pillows or other supportive tools such as swings or hammocks.
- a.
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Decreased sex drive/libido and/or the struggle or inability to orgasm
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Etiology may be due to emotional or psychiatric concerns, but adverse medication effects should not be overlooked and may be a concurrent cause. A comprehensive medication list review should be performed. Regardless of cause, difficulties reaching orgasm can lead to emotional distress. Providers should offer support and consider referrals to occupational therapists or behavioral health specialists for additional assistance.
- a.
Menstrual Management
Approximately 10% of women of childbearing age have a disability. To best support the reproductive and sexual health of these patients, providers must consider several factors including the life stage of the person with a disability, relationship status and expectations, desires for the future (eg, marriage, family planning, healthy aging), and support systems.
Menstruation often poses challenges for PWD including difficulties with menstrual hygiene, cyclical mood changes, catamenial epilepsy, caregiver burden, and desire for contraception. Physicians should implement similar strategies used for those without disabilities when discussing menstrual cycle management.
When managing menstrual care for individuals with IDD, it is crucial to prioritize and respect patient autonomy, given the historic context of forced sterilization in the United States. Menstrual suppression should be considered if menstrual cycles are creating difficulties in the patient’s life, as determined by the patient, caregivers, and family. Menstrual suppression offers several benefits, including preventing anemia, improving hygiene and cleanliness, and reducing cyclical behavioral changes or catamenial seizures.
Historic discrimination based on racism and ableism has led to unequal contraceptive prescribing practices that continue today. Individuals with IDD are less likely to receive long-acting reversible contraception or oral contraceptive pills and more likely to be offered no contraception or surgical sterilization. PWD should have access to the same menstrual management options as those without disabilities. Table 2 can be used by providers to guide discussions on menstrual management with patients and families. Given the many safe and effective nonsurgical options available, the risks and costs of surgical sterilization generally outweigh the benefits, and hysterectomy or tubal ligation should only be considered after all other options have been thoroughly explored.
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