"When I used to go to my doctor, my sister who spoke English went, my mother, who didn't speak English, went and myself. And when the doctor would ask a question, my sister would ask my mom, and then my mom would tell my sister, and then she would translate it to the doctor. So it's like I was just there for the physical thing, and -- and they had their little conversation. So this is how I saw the medical profession, as somebody that you really don't speak to directly." [36-year-old polio survivor with scoliosis]
According to the literature, women and persons with disabilities consume a larger share of health care services than the general population. We wanted to know more about the experience of women with disabilities in accessing health care services. In the interviews that began this study, we found our participants very eager to talk about these experiences; indeed, many used the opportunity to vent some very long held frustrations and deep negative feelings. They complained bitterly about inaccessibility in health care settings, lack of knowledge among health care providers about their disability, and a perception that they were not getting the same quality of health care, particularly reproductive health care, as women in general.
In the national survey, we focused our questions on the types of health care providers used within the past year, as well as the types of health care facilities used. We analyzed differences in utilization patterns between women with and without disabilities. We also asked some general questions about how well their physicians were able to deal with their disability as it might affect an ordinary health problem.
"I had a discharge and I didn't know what it was from and I told my doctor and she told me to find an OB/GYN doctor. When I called the doctor's office they would say O.K. but when you said something about being in a wheelchair the nurse would say let me talk to the doctor and we will get back with you. I called about four doctors and none of them would see me because I was in a wheelchair. When they called back they said no. They preferred not to deal with patients in wheelchairs." [22-year-old woman with paraplegia]
Women with physical disabilities who participated in this study were more likely to have used every major category of health care provider within the past 12 months than women without disabilities. Significantly more women with disabilities had seen general practitioners, rehabilitation specialists, obstetricians/gynecologists, and other specialists. Ninety-one percent of women with disabilities had seen specialists of some type within the past year. Women with disabilities who lived alone were five times more likely to see specialists during the past year. Women who worked full- or part-time were less likely to see specialists. There was a slight trend for women with lower levels of functional impairment and women who work to be less likely to see specialists. Age, household income, duration of disability, self-esteem, perceived control of life, urban or rural residence, or education level did not increase the odds of seeing specialists. It is interesting to note that 24 percent of women with disabilities and 20 percent of women without disabilities used alternative health care providers, such as curanderos, homeopathists, and acupuncturists.
Women with physical disabilities were also more likely to have used every major category of health care facility within the past 12 months than women without disabilities. Significantly more women with disabilities used public health clinics, rehabilitation hospitals, and emergency rooms. We were curious about the high rate of emergency room use, and tried to identify factors that were associated with it. Various disability and socioeconomic factors did not seem to be related; however, we found that women who perceived more control over their lives were less likely to use emergency rooms. Although more women with disabilities (54 percent) reported seeing private physicians than women without disabilities (45 percent), this difference was not significant.
Five items in the national survey asked specifically about the ability of health care providers and facilities to accommodate disability-related needs. These items were grounded in statements made by women with disabilities who participated in the qualitative interviews that preceded the national survey. Thirty-nine percent reported that their physicians do not speak directly to them if a family member or other person accompanies them. Thirty-one percent have had a physician refuse to see them because of their disability. Twenty-six percent believed their physicians were not well-informed about how their disability affects their reproductive health. Thirty-six percent had difficulty finding a physician who was willing or able to manage their pregnancy. More than half of women with spinal cord injury had this problem. Fifty-six percent reported that the hospital could not accommodate their disability-related needs when they gave birth.
Serious barriers exist that reduce the quality of health care available to women with physical disabilities. Architectural barriers in physicians' offices and hospitals still exist, despite the requirements of the Americans with Disabilities Act. There are invisible barriers as well, such as policies that deny service to women who cannot independently mount an examination table, and the refusal of physicians to see women solely on the basis of their disability, also in violation of the Americans with Disabilities Act. Advocacy is needed to inform persons in charge of medical facilities and clinical practices about their obligation to comply with legal requirements for physical and policy accessibility.
Our finding that women with disabilities make significantly greater use of services from specialists and emergency rooms has strong implications. With the advent of managed care, there are more stringent regulations on the use of specialists. For women whose health depends on timely access to physicians who have the specialized knowledge they need, these regulations could seriously affect their ability to maintain good health and prevent minor conditions from escalating into major ones that require more involved and more expensive treatment. Many of the complications of immobility and disability-related diagnoses are not taught in primary care training programs. A specialist may be the most appropriate primary care provider for some women with disabilities. This may also be an insight into the disproportionately high use of emergency rooms we found among women with disabilities. The many barriers to accessing health care, both within medical systems and in the community (such as lack of accessible transportation and attendant services) contribute to delayed treatment. When knowledgeable providers are not available or when systems barriers prevent them from delivering services in a timely manner, otherwise controllable health problems become ones that can only be handled in an emergency room. When we see the use of emergency room services declining, we will know that health care systems have made progress in removing some of these barriers to quality health care service.