Sexual Healthcare for Disabled Youth: Tough and Getting Tougher

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 wasn’t easy emotionally. “Her brother’s boyfriend sexually assaulted her and got her pregnant,” Thew said.

Margaret Thew, DNP

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 couldn’t have carried a fetus,” said Thew, a nurse.

Thew said she was grateful that this tragic event happened before this year. After the US Supreme Court overturned Roe v. calf in June, Wisconsin reverted to an 1849 law prohibiting abortion. Although the law is currently under challenge, Thew wonders how the situation would have played out now. (Weeks after the Supreme Court decision, a similar case occurred in Ohio. In this case, a 10-year-old girl had to travel out of state to receive an abortion after being raped.)

Talking to adolescents and young adults about reproductive health, whether it is an unexpected pregnancy, the need for contraception, or information about sexual activity, can be challenging for even experienced healthcare providers.

The discussions, decisions and care are particularly complex when patients have a developmental and intellectual disability. The many factors, Thew said, include managing your menstrual cycle, finding the right contraception, and counseling parents who may not want to acknowledge their children’s burgeoning sexuality (see box text below).

Statistics: How many?

Because definitions of disability vary and represent a spectrum, estimates of how many young people have intellectual or developmental disabilities vary widely.

In 2019, the National Survey of Children’s Health found that 1 in 4 children and adolescents ages 12 to 17 have special health needs due to a disability. The American Community Survey estimates that more than 1.3 million people ages 16 to 20 have a disability.

Intellectual disabilities can occur when a person’s IQ is below 70, significantly affecting their ability to perform activities of daily living such as eating, dressing and communicating. According to the US Centers for Disease Control and Prevention (CDC), developmental disabilities are impairments related to physical, learning, language, and behavior. Disorders include attention-deficit/hyperactivity disorder, autism spectrum disorders, fragile X syndrome, learning and language problems, spina bifida, and other disorders.

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Dealing with general problems, concerns

April Kayser is a health educator at the Multnomah County Health Department in Portland, Oregon. In 2016, Kayser and other experts conducted interviews with 11 young people with developmental and intellectual disabilities and 34 support persons, 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).

The researchers compiled guidelines from their findings. They provided scenarios healthcare providers need to know and be prepared for:

  • A 14 year old boy unsure what to do when he is sexually aroused and wants to masturbate but is not at home. He was told that masturbation in private is appropriate.

  • A 20-year-old woman living in a group home is pregnant. During a visit, she confesses to her parents that another resident is her boyfriend and the father of her expected child.

  • A 17-year-old boy wants to invite another 15-year-old student.

Some developmentally and intellectually disabled youth are unable to turn to their parents for help. One person in the survey said his father told him, “You don’t have to worry about any of these things. You’re too young.” Another said a healthcare provider’s job is to provide reproductive and sex education “to make sure you don’t screw up anything bad.”

One finding stood out: Healthcare providers were high on the list of those who young people trusted with information about reproductive and sexual health, Kayser said. But in her experience, she said, health professionals are reluctant to address the issues with all youth, “particularly those with intellectual and developmental disabilities.”

Healthcare providers often speak to both the patient and the parents. These conversations can be critical when a child is developmentally or intellectually disabled.

dr Willi Horner-Johnson

It has been shown that women with disabilities are at greater risk of having unwanted pregnancy outcomes, said Dr. Willi Horner-Johnson, associate professor at the 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 much higher than previously thought.

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The researchers found that 19.5% of respondents who gave birth reported at least one sensory, cognitive, or mobility-related disability, a rate much higher than estimates of <1% to 6.6%, based on hospital discharge data.

Her group reported other disturbing findings: Women with disabilities were twice as likely to have smoked during their pregnancy (19% vs. 8.9%) and more likely to have preterm and low-birth-weight babies.

Clinicians play an important role

Horner-Johnson agreed with the Multnomah County survey finding that health care providers play an important role in providing people with intellectual and developmental disabilities with reproductive health care that meets their needs. “Clinicians need to ask people with disabilities about their reproductive plans,” she said.

In the Multnomah County report, the researchers advised health care providers to recognize that people with disabilities are social and sexual beings; to learn more about their goals, including those related to 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 physicians discuss reproductive plans at each visit, for example by asking a key question: ‘Do you want to conceive in the next year?’ ― every woman of childbearing age.”

Some women will not be able to answer this question, and healthcare providers sometimes have to rely on a caregiver for input. But many women, including those with disabilities, could respond if given the opportunity. She estimates that only about 5% of people with disabilities cannot communicate. “Clinicians detach themselves from the caregiver more than is necessary,” she said.

Clinicians are getting better at caring for people with disabilities, Horner-Johnson said, but they still have a long way to go. Clinical bias may prevent some from asking all women, including those with disabilities, about their reproductive plans. “Women with disabilities have described physicians treating them as nonsexual, assuming or implying that they would not or should not become pregnant,” she writes in her report.

Such prejudice, she said, could be reduced with more education for providers. A 2018 study in Health Justice found that only 19.3% of gynecologists said they felt able to manage the pregnancy of a woman with disabilities.

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Dealing with sexuality and sexual health for youth with disabilities can be complex, said Margaret Thew, DNP, medical director of adolescent medicine at Children’s Wisconsin in Milwaukee. The challenges include:

  • Parents often cannot handle the fact that their teen or young adult is, or may become, sexually active. Parents she helps often prefer to use the term “hormones” rather than contraceptives when discussing birth control.

  • Menstruation is a common problem, especially for youth with severe disabilities. Some react strongly to, for example, seeing a pad with blood on it by throwing it away. Parents worry that caregivers are reluctant to change pads regularly. As a result, some parents want complete menstrual suppression, Thew said. The American Academy of Pediatrics (AAP) describes how to address menstrual suppression through methods such as using estrogen-progestin, progesterone, a ring, or a patch. In late August, the American College of Obstetricians and Gynecologists published its clinical consensus on the medical management of menstrual suppression.

  • Some parents want to know how to achieve a full hysterectomy for the patient, an option that Thew and the AAP advise against. “We’re going to tell them this isn’t the best and safest approach because you want the estrogen for bone health,” she said.

  • After discussing all the options, an IUD turns out to be best for many. “That gives 7 to 8 years of protection,” she said, which is the approved effective duration for such devices. “You have less heavy monthly menstrual bleeding.”

  • Parents of boys with disabilities, particularly those with Down syndrome, often seek sex education and counseling when sexual desires develop.

  • Many parents want effective birth control for their children because they fear their teen or young adult will be attacked, a fear that is not unfounded. Such cases are common, and caregivers are often the perpetrators.

Kayser, Horner-Johnson and Thew have not disclosed any relevant financial relationships.

Kathleen Doheny is a freelance health and lifestyle journalist based in Los Angeles. Follow her on Twitter: @DohenyKathleen.

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