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Disability, as defined by the Americans with Disabilities Act of 1990, is "a physical or mental impairment that substantially limits one or more of the major life functions of an individual." Improved neonatal and geriatric care as well as advancements in medical technology, have led to a large increase in the number of adults living with disabilities.
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Currently, 25 million women in the United States have a disability.
Women with disabilities have many of the same reproductive health needs as the general population. Breast and cervical cancer screening as well as counseling regarding menstruation, pregnancy, menopause and sexual function are all recommended. Unfortunately, only 67 percent of women with disabilities receive the counseling and gynecologic care that they need. Numerous barriers to care have been identified including environmental, attitudinal, emotional and financial. In addition, many physicians and health care providers are inadequately trained in the special needs of this population.
Environmental or physical barriers are the most significant for women with difficulties with mobility. Many older medical buildings still lack ramps or wheelchair accessible bathrooms. Exam tables are often too high for a disabled patient to manage. Some equipment often is unable to accommodate those who cannot stand independently.
Provider attitudes and misconceptions about reproductive health needs and sexual activity among women with disabilities also present a barrier to care. Although most studies show that most disabled women have the same sexual interests and needs as the general population, they often are not even questioned by health professionals about their needs for contraception, protection from sexually transmitted disease, sexuality or domestic abuse.
Women born with a disability may lead a sheltered life and have limited opportunity for social interactions or dating, but women who become disabled after puberty may have prior sexual experience and may need guidance on adjusting to possible changes in sexual function related to their condition. The need for contraception, as always, must be individualized. Sterilization procedures should never be performed without full informed consent of the patient. Preconception counseling is strongly urged for women with disabilities considering pregnancy so that risks of medications and pregnancy itself can be evaluated.
Studies show that women with disabilities have the same high risk for victimization and abuse by partners as the general population. The risk of neglect, abuse and exploitation by caregivers and attendants, however, is higher since many physically disabled women are so dependent upon caregivers to meet their basic needs.
Better screening tools and awareness among providers may help to improve detection rates. All women should be given information about domestic violence and abuse prevention services in their community so that they can obtain information and assistance confidentially if desired.
Pelvic exams can be particularly challenging in women with disabilities. Women with restricted mobility or spasticity may have difficulty with positioning for a gynecologic exam. Those with developmental disability may find the exam emotionally difficult.
Financial barriers also limit access to care. Many disabled women are forced to rely on public assistance programs because they are unable to work. More than 25 percent of disabled women live below the poverty level and many are even homeless. Medical centers willing to accept state-funded insurance or someone without insurance are often limited.
Despite these challenges, disabled women are entitled to the same level of gynecologic care as the general population. Good communication, sensitivity, patience and respect on the part of the providers can help to alleviate the fears that many disabled women experience when accessing health care. Better training of caregivers regarding the evaluation and management of women with disabilities is strongly recommended. The barriers to care for the disabled are significant but not impossible to overcome with a concerted effort by everyone in the community.
(Dr. Talbert is a board certified OB/GYN specialist practicing with Cape Obstetrics, Midwifery & Gynecology in Falmouth and Sandwich, 508-457-0088.)