The Centers for Disease Control and Prevention (CDC) reports that over 12 million children and adolescents have a diagnosed developmental disability. This number is on the rise, especially with the increase in autism spectrum disorder (ASD) in recent years. One in 44 children have a diagnosis of ASD according to the CDC. This increased prevalence in children and adolescents with disabilities means that generalist providers will see significantly more patients with a variety of disabilities in the coming years. Unfortunately, traditional medical education often lacks specific training on how to best care for this cohort of patients, and many barriers often arise. According to the American College of Obstetricians and Gynecologists (ACOG), “excellent gynecologic healthcare for women and adolescents with disabilities is comprehensive; maintains confidentiality; is an act of dignity and respect toward the patient; maximizes the patient’s autonomy; avoids harm; and assesses and addresses the patient’s knowledge of puberty, menstruation, sexuality, safety, and consent.”
Disease/definition
There are many different types of disabilities. According to the CDC, a disability is any condition of the body or mind (impairment) that makes it more difficult for the person with the condition to do certain activities (activity limitation) and interact with the world around them (participation restrictions). Disabilities can be physical—affecting, for example, mobility, dexterity, vision, or hearing—or intellectual—affecting thinking, remembering, learning, or communicating. Many people have challenges in both. Although patients with disabilities are often grouped together in discussing health care needs, it is imperative to remember that this group is quite diverse with a range of needs.
Whereas some disabilities are present at birth, others may occur because of an injury or are developmental, becoming apparent during childhood or adolescence. Disabilities can be static, or they may improve or progress over time.
With respect to reproductive health care, adolescence is the time when a disability may become more challenging because of growth, patient awareness, cyclical changes like seizure activity or moods, and, of course, menstruation and fertility. Although sexual activity, orientation, education, and safety are complicated issues for all teenagers, they are often ignored in adolescents with any disability.
Prevalence and epidemiology
Sixty-one million adults in the United States have a disability. According to the CDC, 1 in 6 children have a developmental disability, with 1 in 345 having cerebral palsy.
Most patients with disabilities go through puberty in a similar manner to their nondisabled peers, but the rate of maturation may vary. When patients go through puberty early (e.g., with spina bifida and cerebral palsy), they may have needs that are not yet anticipated.
The overall prevalence of sexual activity is similar for reproductive-aged women with and without disabilities. Women with disabilities have been victims of disproportionate incidences of sexual violence and inadequate sexual education counseling that have led to higher rates of sexually transmitted infections and unplanned pregnancies. Recent research suggests that young persons with disabilities are three times as likely to experience sexual violence as those without disabilities, with the highest rates of violence occurring in those aged 12 to 15. , In a survey of about 8000 eleventh graders, 34% identified as having a disability. In this group, 20% self-reported that they had ever been forced to have sex, compared with 7% in the nondisabled group.
There are only minimal data on gender issues in these adolescents, but parents and gender clinics have reported more gender variance in teens with ASD and attention-deficit/hyperactivity disorder, and in the study of eleventh graders, only 72% of the students with disabilities self-identified as heterosexual, compared with 91% in the nondisabled group.
Reproductive health education is too often overlooked in this population, where despite experiencing these increased risks, adolescents with disabilities receive far less education on this topic from parents, schools, and providers compared with their peers.
Barriers to care and communication challenges
Patients with disabilities often face multiple barriers to receiving adequate reproductive health care. Physical barriers include facilities that are inaccessible because of lack of elevators or ramps, lifts or lift teams are not available, or examination tables do not move up or down. Other barriers include need for longer appointment times and financial concerns.
Communication is another challenge. When talking to a patient with—or about a patient with—a disability, it is imperative to remember that a person is not a disability, condition, or diagnosis, but rather a person who has a disability, condition, or diagnosis. One should use neutral language that defines a patient’s intellectual and cognitive abilities, rather than their disabilities. Certain phrases can be offensive to persons with disabilities including words such as retardation, challenged, and wheelchair-bound . It is important that a provider not assume, but rather assess, a patient’s competence and ability to communicate without only letting caregivers speak on a patient’s behalf. As with any patient, providers should give as much autonomy as possible to the patient, based on age and level of competence.
A survey showed that persons with a disability are significantly more likely than those without a disability to perceive that the physician does not listen to them, does not explain treatment so that they understand, does not treat them with respect, does not spend enough time with them, and does not involve them in treatment decisions. Unfortunately, training in medical school and residency is lacking in disability care. Both practicing pediatricians and obstetrics and gynecology providers have acknowledged discomfort and inadequate training. ,
Providers may also have personal biases and therefore offer reproductive services less often to patients with disabilities. Therefore education for providers should be improved so they can consider creative ways to communicate, respect autonomy, and ensure equitable access to reproductive health care ( Fig. 12.1 , Table 12.1 ).
| Do Not Say | Do Say |
|---|---|
| Disabled person | Person with a disability |
| What happened to you? | How should I describe your disability? |
| Confined to a wheelchair, wheelchair bound | Wheelchair user, person who uses a wheelchair or mobility device |
| Nonverbal, mute | Person who uses an alternative method of communication, communicates nonverbally |
| Suffering from (disability) | Living with/has (disability) |
| Hearing impaired | Person who is hard of hearing |
| Slow learner | Has a learning disability |
| Brain damaged | Has a brain injury |
| Seeing eye dog | Service animal or dog |
| Able-bodied | Nondisabled |
| Handicapped parking, disabled restroom | Accessible parking or restroom |
| Mentally handicapped, retarded | Intellectually disabled |
| Afflicted by, victim of, suffers from (name of condition) | Has (name of condition) |
Clinical presentation/evaluation
For patients with disabilities, adolescence can be a challenging time. The most common reasons why patients with disabilities present for reproductive health care include anticipatory pubertal guidance, behavioral changes with menses, issues around menstruation like suppression and hygiene, and safety and sexuality. , See Fig. 12.2 . 
A recent study shows that adolescents with disabilities who present to their health care provider for anticipatory guidance typically present 13.5 months before menarche, so starting anticipatory guidance at the time of breast development is recommended.
Patients feel a sense of separation from their peers, but mood changes may be especially challenging for families who might already be struggling with emotional regulation. Cyclical behavioral changes can also be associated with dysmenorrhea, which may be hard to assess in nonverbal patients. Menstruation can lead to hygiene concerns, as for many patients with disabilities who need help with toileting, menstrual management is handled by a parent or caretaker. Menstrual products can be hard to use or too personal to get help with (e.g., tampons and menstrual cups). Additionally, if a patient uses a wheelchair, pads may be uncomfortable and may require an adjustment period. Period-absorbing underwear is a wonderful option to share with patients who struggle with hygiene. Another product called Tina, is a tampon inserter which is bioengineered to help those who are disabled or not able to insert a tampon on their own. See here for more information: tinahealthcare.com .
With the start of puberty—and especially with menstruation—families struggle with sexuality, safety, and fertility. Parents often think of their children with disabilities as asexual, when in fact, that is not the case. Parents are often uncomfortable addressing these issues and are looking to care providers for help.
Sexual health education
At a reproductive health visit, sexuality and sex education needs should be assessed. Discussions should first evaluate the patient’s understanding and knowledge of sexuality and sex. Next, providers should assess the patient’s safety and ability to consent to any intimate contact, as well as any previous unwanted experiences. After an initial assessment, education can then include anatomic and physiologic changes of puberty, sex and sexual development, gender identity, healthy relationships, safe online practices, consent, and sexual abuse. Some excellent resources are available for providers. A resource for patients and their guardians, entitled Healthy Bodies: A Parent’s Guide on Puberty for Girls with Disabilities, can be found at https://vkc.vumc.org/healthybodies/files/HealthyBodies-Girls-web.pdf . Girlology: You-Ology. A puberty guide for every body by Melissa Holmes.
It is helpful, if possible, to involve a social worker, sexual health educator, or nurse in these discussions to ensure developmentally appropriate teaching and to provide resources for the families to continue the discussions at home. Repeated messages with basic language and safety concepts like NO-GO-TELL are important to be taught and then repeated by the family. NO-GO-TELL is a simple phrase that children can easily remember when in uncomfortable situations. They are taught to say “no,” then “go” (i.e., remove themselves from the situation), and finally “tell” an adult. If appropriate, a confidential interview to discuss sexual health should be considered, as it is for all teenagers. Lastly, with the increase of patients with disabilities using the Internet, providers should make an effort to address what types of online communication are safe ( Fig. 12.3 ).
Physical examination
Breast examinations can be started at age 21 or when deemed indicated. 
Pelvic examinations are not often needed in adolescents, except for the usual gynecologic indications like discharge, vulvar concerns, and so on. Cervical screening recommendations should be discussed with the patient and family and shared decsision-making used to decide if and when this is appropriate. Consider these screenings in conjunction with other procedures, like dental procedures. Human papilloma virus (HPV) vaccinations are also recommended, as in the general population.
Menstrual management/treatment options
When discussing menstrual suppression and management, there are special considerations for patients with disabilities. First, it is important to be aware of the impact of menses on the patient’s daily life. Does menses prohibit an individual from participating in normal activities? Does it cause pain? Does it lower their seizure threshold? See Table 12.2 for more questions to consider discussing. Second, it is important to consider if a patient has significant mobility challenges and uses a wheelchair exclusively, which may put them at an increased baseline risk of a venous thrombotic event (VTE). If they additionally have other medical comorbidities, such as significant obesity, an estrogen-containing method may be less desirable. Often, patients with disabilities also take medications, like certain antiepileptics, that might interact with hormonal treatments.
