The developmentally disabled girl was just 10 years old when Margaret Thew, DNP, medical director of adolescent medicine at Children’s Wisconsin in Milwaukee, helped care for her. Providing that care was not emotionally easy. “Her brother’s friend sexually assaulted her and impregnated her,” Thew said.
The girl was able to obtain an abortion, a decision her parents supported. The alternative could have been deadly. “She was a tiny little person and would not have been able to carry a fetus,” Thew, a nurse practitioner, said.
Thew said she’s thankful that tragic case occurred before this year. After the US Supreme Court overturned Roe v. Wade in June, Wisconsin reverted to an 1849 law banning abortion. Although the law is currently being challenged, Thew wonders how the situation would have played out now. (Weeks after the Supreme Court’s decision, a similar case occurred in Ohio. In that case, a 10-year-old girl had to travel out of the state to obtain an abortion after having been raped.)
Talking to adolescents and young adults about reproductive health, whether regarding an unexpected pregnancy, the need for contraception, or to provide information about sexual activity, can be a challenge even for experienced healthcare providers.
The talks, decisions, and care are particularly complex when patients have developmental and intellectual disabilities. Among the many factors, Thew said, are dealing with menstruation, finding the right contraceptives, and counseling parents who might not want to acknowledge their children’s emerging sexuality (see boxed text below).
Statistics: How Many?
Because the definitions of disabilities vary and they represent a spectrum, estimates for how many youth have intellectual or developmental disabilities range widely.
In 2019, the National Survey of Children’s Health found that 1 in 4 children and adolescents aged 12 to 17 years have special healthcare needs because of disability. The American Community Survey estimates more than 1.3 million people aged 16 to 20 have a disability.
Intellectual disabilities can occur when a person’s IQ is below 70, significantly impeding the ability to perform activities of daily living, such as eating, dressing, and communicating. Developmental disabilities are impairments in physical, learning, language, and behavior, according to the US Centers for Disease Control and Prevention (CDC). Among the conditions are attention-deficit/hyperactivity disorder, autism spectrum disorders, fragile X syndrome, learning and language problems, spina bifida, and other conditions.
Addressing Common Issues, Concerns
April Kayser is a health educator for the Multnomah County Health Department, in Portland, Oregon. In 2016, Kayser and other experts conducted interviews with 11 youth with developmental and intellectual disabilities and 34 support people, either parents or professionals who provide services. The survey was part of the SHEIDD Project ― short for Sexual Health Equity for Individuals with Intellectual/Developmental Disabilities ― at Oregon Health and Science University (OHSU).
From their findings, the researchers compiled guidelines. They provided scenarios that healthcare providers need to be aware of and that they need to be ready to address:
A boy, 14, who is unclear about what to do when he feels sexually excited and wants to masturbate but isn’t at home. He has been told that masturbation is appropriate in private.
A 20-year-old woman who lives in a group home is pregnant. She confesses to her parents during a visit that another resident is her boyfriend and that he is the father of the child she is expecting.
A 17-year-old boy wants to ask out another student, who is 15.
Some developmentally and intellectually disabled youth can’t turn to their parents for help. One person in the survey said his father told him, “You don’t need to worry about any of that stuff. You’re too young.” Another said the job of a healthcare provider was to offer reproductive and sex education “to make sure you don’t screw up in some bad way.”
One finding stood out: Healthcare providers were at the top of the list of those whom young people trusted for information about reproductive and sexual health, Kayser said. Yet in her experience, she said, healthcare professionals are hesitant to bring up the issues with all youth, “especially those with intellectual and developmental disabilities.”
Healthcare providers often talk both to the patient and to the parents. Those conversations can be critical when a child is developmentally or intellectually disabled.
Women with disabilities have been shown to have a higher risk for adverse outcomes of pregnancy, said Willi Horner-Johnson, PhD, associate professor at OHSU–Portland State University School of Public Health.
In a recent study, she and her colleagues analyzed data from the CDC’s National Survey of Family Growth that included self-reported disability status. They found that the number of women with disabilities who give birth is far higher than was previously thought.
The researchers found that 19.5% of respondents who gave birth reported at least one sensory, cognitive, or mobility-related disability, a rate that is much greater than the <1% to 6.6% estimates that are based on hospital discharge data.
Her group reported other troubling findings: Women with disabilities are twice as likely to have smoked during their pregnancy (19% vs 8.9%) and are more likely to have preterm and low-birthweight babies.
Clinicians Play an Important Role
Horner-Johnson agreed with the finding from the Multnomah County survey that healthcare providers play an important role in providing those with intellectual and developmental disabilities reproductive healthcare that meets their needs. “Clinicians need to be asking people with disabilities about their reproductive plans,” she said.
In the Multnomah County report, the researchers advised healthcare providers to recognize that people with disabilities are social and sexual beings; to learn about their goals, including those regarding sex and reproductive health; and to help youth build skills for healthy relationships and sexual activity.
Horner-Johnson pointed out that the American College of Obstetricians and Gynecologists “recommends that clinicians discuss reproductive plans at every visit, for example, by asking one key question ― ‘Would you like to become pregnant in the next year?’ ― of every woman of reproductive age.”
Some women will not be able to answer that question, and healthcare providers at times must rely on a caregiver for input. But many women, even those with disabilities, could answer if given a chance. She estimated that only about 5% of disabled people are unable to communicate. “Clinicians defer to the caregiver more than they need to,” she said.
Clinicians are becoming better at providing care to those with disabilities, Horner-Johnson said, yet they have a way to go. Clinician biases may prevent some from asking all women, including those with disabilities, about their reproductive plans. “Women with disabilities have described clinicians treating them as nonsexual, assuming or implying that they would not or should not get pregnant,” she writes in her report.
Such biases, she said, could be reduced by increased education of providers. A 2018 study in Health Equity found that only 19.3% of ob-gyns said they felt equipped to manage the pregnancy of a woman with disabilities.
Managing sexuality and sexual health for youth with disabilities can be highly complex, according to Margaret Thew, DNP, medical director of adolescent medicine at Children’s Wisconsin in Milwaukee. Challenges include the following:
Parents often can’t deal with the reality that their teen or young adult is sexually active or may become so. Parents she helps often prefer to use the term “hormones,” not contraceptives, when talking about pregnancy prevention.
Menstruation is a frequent concern, especially for youth with severe disabilities. Some react strongly to seeing a sanitary pad with blood, for example, by throwing it. Parents worry that caregivers will balk at changing pads regularly. As a result, some parents want complete menstrual suppression, Thew said. The American Academy of Pediatrics (AAP) outlines how to approach menstrual suppression through methods such as the use of estrogen-progestin, progesterone, a ring, or a patch. In late August, the American College of Obstetricians and Gynecologists released its clinical consensus on medical management of menstrual suppression.
Some parents want to know how to obtain a complete hysterectomy for the patient ― an option Thew and the AAP discourage. “We will tell them that’s not the best and safest approach, as you want to have the estrogen for bone health,” she said.
After a discussion of all the options, an intrauterine device proves best for many. “That gives 7 to 8 years of protection,” she said, which is the approved effective duration for such devices. “They are less apt to have heavy monthly menstrual bleeding.”
Parents of boys with disabilities, especially those with Down syndrome, often ask for sex education and guidance when sexual desires develop.
Many parents want effective birth control for their children because of fear that their teen or young adult will be assaulted, a fear that isn’t groundless. Such cases are common, and caregivers frequently are the perpetrators.
Kayser, Horner-Johnson, and Thew have disclosed no relevant financial relationships.
Kathleen Doheny is a Los Angeles freelance health and lifestyle journalist. Follow her on Twitter: @DohenyKathleen.