Abstract

Using data from the Medical Expenditure Panel Survey for 2000 and 2002, we compared potential and realized use of health care for a national sample of working-age women with cognitive disabilities. Despite having similar likelihoods of potential access to health care as compared to nondisabled women, they had markedly worse rates of receiving cervical cancer and breast cancer screenings, similar rates of routine check-ups, and yet had better rates of receipt of influenza shots. They were also less likely to be satisfied with their medical care than were nondisabled women. Policy recommendations are suggested to address the disability-based disparities in reproductive health care for women with cognitive limitations.

Among the community of individuals with mental retardation, their families, service providers, and researchers, there have been longstanding concerns about the health status and provision of health care to people with mental retardation. These ongoing concerns prompted the Surgeon General to sponsor a national conference in 2001 that subsequently led to the creation of a detailed plan to improve the health of people with mental retardation (U.S. Department of Health and Human Services, 2002).

As part of this national blueprint, six organizing goals were adopted, including increasing knowledge of the health care needs of people with mental retardation and improving the quality of health care received by people with mental retardation (U.S. Department of Health and Human Services, 2002, pp. 5–8). Participants in the Surgeon General's conference articulated great concern about the lack of information regarding the health care of people with mental retardation. Therefore, advancing knowledge in this area emerged as a key priority.

Although Healthy People 2010, the nation's public health plan, clearly identified the elimination of disability-based disparities as a major goal, baseline data were not available for more than half of the 207 objectives related to people with disabilities (U.S. Department of Health and Human Services, 2000). Further, the evidence on the health care of people with mental retardation is even more sparse. In the present study we examined the extent to which disability-based disparities exist in the health care received by women with cognitive limitations as contrasted with nondisabled women.

Review of Research Literature on Health Care

Defining Health Care Access

The Institute of Medicine (1998) defined health care access as the timely utilization of services to achieve the best possible health. Access includes both the potential for obtaining appropriate health care services and the actual use, or realization, of such services (Aday & Andersen, 1981, 1984). An array of indicators has, therefore, been employed to measure the multidimensional construct of access, including health insurance coverage, receipt of appropriate preventive care, having a usual source of care, number of doctor visits, well-child care, mammography, and Pap smear tests (Department of Health and Human Services, 2000).

Patient satisfaction with care has also been identified as an important factor in predicting health outcomes (Department of Health and Human Services, 2000). Barriers to receipt of satisfactory care occur at the personal clinical encounter and health care system levels. These barriers are especially significant for people with disabilities because they typically have elevated needs for health care and, thus, increased levels of interaction with all aspects of the health care system (Iezzoni, McCarthy, Davis, Harris-David, & O'Day, 2001).

Access to Health Care and People With Cognitive Impairments

People with cognitive disabilities face unique challenges to accessing health care. Following widespread deinstitutionalization, more people with cognitive disabilities are living in community settings and receiving care from providers outside institutions. However, few primary care doctors in the community setting are adequately trained to work with this population, and there are few educational resources available for physicians (Mesinger-Rapport & Rapport, 1997). Further, most primary care physicians serve a small number of patients with cognitive disabilities and, thus, do not develop adequate expertise in working effectively with them (Mesinger-Rapport & Rapport, 1997).

A further deterrent to health care access may be providers' attitudes regarding the health care needs of adults with cognitive disabilities. In addition to having insufficient training, physicians and other health care providers may be reluctant to work with these adults because their conditions are more complex compared to the general population and often involve multiple disorders (Department of Health and Human Services, 2002). Providers may be either unaware of or overwhelmed by the complex nature of the health care needs of people with cognitive limitations. Unfortunately, some providers are reluctant to provide care because they hold pejorative or discriminatory attitudes about these individuals and their quality of life (Department of Health and Human Services, 2002). In addition, the physical location and services available from community clinics are often inaccessible to adults who also have mobility or sensory impairments.

Other researchers have speculated that pressures exerted by managed care funding make it increasingly difficult for health care professionals to provide special attention for adults with cognitive impairments because such care is time-consuming (Brown & Gill, 2002). Primary care physicians working in managed care arrangements receive capitated (predetermined fixed fee) payments that are expected to cover the cost of care for all enrollees over a specified time period. Adults with cognitive limitations typically require greater levels of care to obtain appropriate treatment, and their overall health care is more expensive than that of the nondisabled population. Thus, managed care physicians assume a financial risk by serving patients who require additional time for general health services because they are generally not compensated for the extra time it takes to serve this population of adults (Mitchell, 1999).

Access to care may also be influenced by the type of setting in which a person resides. Lewis, Lewis, Leake, King, and Lindemann (2002) reported that people living at home were less likely to receive preventive health care than individuals residing in community care facilities. This finding may be related to the fact that community care facilities are typically required to provide or secure health care as part of their licensing, accreditation, or Intermediate Care Facilities/Mental Retardation (ICF/MR) certification requirements. Although preventive care services were found to be less adequate for people living at home, these services were also insufficient for residents of community care facilities. Lewis and her colleagues found that even though nearly all study participants had a primary care physician, more than half were not protected from tetanus nor had they received an influenza vaccine in the last year. When we compared the rates of tetanus protection and receipt of influenza vaccine among people with developmental disabilities (Lewis et al., 2002) with the general population (Singleton, Greby, Wooten, Walker, & Strikas, 2000), the protection levels were somewhat worse for adults with disabilities. However, different data collection methodologies preclude easy comparisons. These findings suggest that even when access to services is available, people with cognitive impairments may not receive clinically indicated preventive care.

Preventive Care and People With Cognitive Limitations

Utilizing preventive care can be a challenge for people with cognitive limitations. Preventive services include annual influenza shots, routine health checks, and clinically recommended medical screenings for diseases such as cervical, prostate, breast, and colon cancer. For example, there is some evidence that women with cognitive disabilities receive inadequate preventive health care, specifically in obtaining Pap smears and breast examinations. In three studies in which researchers examined these services, women with cognitive disabilities were found to be less likely than nondisabled women to receive routine breast and cervical cancer screenings (Havercamp, Scandlin, & Roth, 2004; Kopac, Fritz, & Holt, 1998; Lewis et al., 2002).

Although the reasons for this poor pattern of preventive care remain unclear, they may be related to the pejorative attitudes society still harbors regarding the sexuality of women with cognitive limitations (Block, 2002; Brown & Gill, 2002; Gill, 1996). Many medical professionals maintain the attitude that women with cognitive disabilities are asexual and, therefore, exempt from the need for these crucial preventive screenings (Brown & Gill, 2002; Havercamp et al., 2004; U.S. Public Health Service, 2002).

There is also evidence that physicians offering cervical cancer screenings to women with cognitive impairments often do not effectively explain procedures nor adequately obtain consent to touch the women's bodies before conducting the exam (Brown & Gill, 2002). Broughton and Thomson (2000) found that women frequently reported experiencing pain and difficulty during procedures for Pap tests. Messinger-Rapport and Rapport (1997) found that women with cognitive limitations may view the medical environment as threatening and, therefore, may initially react with agitation and frustration.

These studies highlight the unique challenges women with cognitive limitations face in utilizing reproductive health care. However, because the majority of these investigators drew their sample from existing service recipients, the health care outcomes of the population with cognitive limitations remains largely unknown. Research on the special concerns of women with cognitive disabilities is especially sparse. To address the need for further empirical evidence regarding the health care access and outcomes of women with cognitive disabilities, we describe potential health care access and realized care among a nationally representative sample of working-age American women with cognitive limitations.

Terminology Note

The terminology that researchers and practitioners use to describe people with intellectual disabilities is contested territory. A pejorative history is attached to the term mental retardation, as evidenced by the fact that the Arc and TASH, leading organizations in the United States, changed their names to eliminate their use of the term “mental retardation.” The American Association on Mental Retardation is now considering doing the same. In this paper, cognitive impairments and disabilities are used interchangeably to denote individuals who have some limitation in their intellectual functioning. It is important to note that the dataset used in the present study did not contain questions that permit separate analyses for people who have received a label of “mental retardation.” Further information is provided on this issue in the description of the sample below.

Method

Data Source

Data were obtained from the 2000 and 2002 consolidated household components of the Medical Expenditure Panel Survey, a national telephone survey of approximately 31,000 households in the United States (Agency for Healthcare Research and Quality, 2003, 2004). This panel survey collects data at both the individual and household level. The sample is drawn from a nationally representative subsample of households that participated in the National Health Interview Survey (NHIS) that oversampled African Americans, Latinos, adults with functional impairments, and low-income households (Cohen, 2002). This survey is fielded by the Centers for Disease Control's National Center for Health Statistics, and information is collected related to the health of the civilian noninstitutionalized population. It is a multistage area probability design, and individual data are collected on all people living in sampled households (Gentleman & Pleis, 2002).

Each Medical Expenditure Panel Survey includes data collected for 2 calendar years to obtain annual use and expenditure information. In this study, we combined data from the 2000 and 2002 consolidated data files. In each year, approximately 9,500 households are included in the survey. In addition to basic demographic and socioeconomic information, the survey is used to collect information on an array of factors and characteristics related to the health care and well-being of children and adults.

Sample

The data were obtained for working-age women (18 to 64 years) with and without cognitive limitations that were determined on the family level through the use of a three-part question asking whether any adult in the family (a) had experienced confusion or memory loss, (b) had problems making decisions, or (c) required supervision for their own safety (Agency for Healthcare, 2003). Affirmative responses to any of these three conditions were coded as a family member having a cognitive disability. Women with impairments other than cognitive limitations (e.g., mobility impairments, vision impairments, mental illness) were excluded from the analyses reported here.

Women with impairments other than cognitive limitations could not be inferred from these data. The Medical Expenditure Panel Survey does not include questions related to the length and duration of the cognitive impairment, dementia, or other possible etiological factors. The sample likely included women with cognitive limitations other than those labeled “mental retardation.” However, the age of the sample was restricted to working age women (aged 18 to 64) to minimize the inclusion of elderly women with dementia and related impairments.

The sample included 15,831 women aged 18 to 64 years (representing an estimated 72.63 million women living in the United States). Of these, 296 women respondents (representing an estimated 1.14 million women) had a cognitive impairment. Table 1 describes the demographic characteristics of the sample. Consistent with previous research (e.g., Yamaki & Fujiura, 2002), women with cognitive impairments were poorer and older than their nondisabled counterparts. All analyses of health care access and of satisfaction were adjusted for age, so the results can be fairly compared between the two groups.

Table 1

Sample Characteristics of U.S. Women by Cognitive Limitation (Disability) Status: 2000 and 2002

Sample Characteristics of U.S. Women by Cognitive Limitation (Disability) Status: 2000 and 2002
Sample Characteristics of U.S. Women by Cognitive Limitation (Disability) Status: 2000 and 2002

Respondents

The Medical Expenditure Panel Survey selects a single knowledgeable adult to serve as the respondent for the entire household. This respondent answered all survey questions regarding health care access and satisfaction with care. Out of the 296 women with cognitive limitations who formed the sample for the present study, 225 served as survey respondents. For the remaining 71 women, another adult living in the household responded on their behalf. In the event that a respondent did not understand the question, another adult in the household was asked the question. If a woman was deemed to be too “mentally incompetent” to answer the question and a proxy respondent could not be located, the woman was not included in the survey or the present sample. As such, women with the most severe impairments who were living alone were likely excluded from the study. Data were not available on the number of women who were thus excluded.

For the present study, we analyzed data from all respondents for the measures of health care access. For the measures of satisfaction with care, proxy respondents were excluded, and we only analyzed the 225 self-reporting women's responses. This analytic approach was taken to isolate the disabled women's own feelings regarding their satisfaction with the care they received. However, for the measures of health care access, proxy responses were included to (a) increase the sample size and reduce the resultant standard error of the estimates and (b) include data regarding women who may have been too impaired to respond themselves. We decided that it was likely that another adult living in the home who served as a partner or caregiver would have knowledge of the disabled family member's health care. Family caregivers have served as proxy respondents in previous research (e.g., Krauss, Gulley, Sciegaj, & Wells, 2003).

Measures

Because health care access is a multidimensional concept that encompasses the potential to obtain services and actual receipt of services (Anderson & Aday, 1981, 1984), we analyzed 8 measures of health care access and 5 measures of satisfaction with care. The two measures of the potential for health care included having a usual source of health care and having health insurance, both of which generally indicate a greater likelihood of receiving good continuity of care. Having a usual source of care was determined from two questions “Do you have a usual source of health care?” and “What is your usual source of health care?” If the usual source of care was provided by an emergency room, the woman was deemed not to have a usual source of care. We obtained the measure for health insurance by asking “Were you uninsured for all of the previous year?”

The measures of realized health care access addressed receipt of four clinical preventive services in the preceding 12 months: Pap smear, mammogram, flu shot, and a routine medical check-up.

Satisfaction with care was measured by responses to 5 Medical Expenditure Panel Survey questions: “Do you feel your doctor listened to you? Did your doctor show you respect? Did the doctor explain things so you understood? Did the doctor spend enough time with you?” and “Did you get a medical appointment when you wanted?” Responses to these questions were given using a 4-item scale of never, sometimes, usually, and always. For our analyses, responses of never and sometimes were recoded as no and responses of usually and always were recoded as yes.

Analyses

We used SPSS to describe sample characteristics (Table 1). To answer the research questions, we estimated multivariate logistic regression models because all dependent measures were binary. For ease of interpretation, we report results as odds ratios, which are transformations of the coefficient estimates obtained from logistic regression models. These odds ratios indicate, for example, the likelihood (odds) of women with disabilities having a usual source of care relative to nondisabled women. An odds ratio of less than 1 indicates that women with disabilities are less likely to have a particular measure of health care access as compared to nondisabled women. An odds ratio greater than 1 indicates the opposite—women with disabilities are more likely to have the specific measure of health care access. For example, an odds ratio of 1.38 indicates that the women with disabilities were 38% more likely than the nondisabled women to have the particular health care outcome for which the ratio was obtained.

For each logistic regression model, taking into account the complex survey design, we used Survey Data Analysis (SUDAAN) software to calculate the 95% confidence intervals (Research Triangle Institute, 2001). SUDAAN uses Taylor-series linearization to appropriately estimate variance with survey data derived from complex sampling designs, such as the Medical Expenditure Panel Survey (Research Triangle Institute, 2001). Wald F scores (and statistically significant p values) are presented for the main effect of cognitive disability status in each model (see Table 2).

Table 2

Weighted Odds Ratios (95% Confidence Intervals) for Cognitive Disability Status in Health Care Access Among U.S. Women Aged 18–64: 2000 & 2002

Weighted Odds Ratios (95% Confidence Intervals) for Cognitive Disability Status in Health Care Access Among U.S. Women Aged 18–64: 2000 & 2002
Weighted Odds Ratios (95% Confidence Intervals) for Cognitive Disability Status in Health Care Access Among U.S. Women Aged 18–64: 2000 & 2002

Following the recommendation of the Medical Expenditure Panel Survey statisticians (because the data were pooled from the 2000 and 2003 Medical Expenditure Panel Survey 2002 Medical Expenditure Panel Survey household components), weights were halved for each respondent to estimate the U.S. population between 2000 and 2002 (Agency for Healthcare, 2003, 2004). Separate regressions were also run for the 2000 and 2002 samples. However, because systematic differences were not found between the results with the combined samples and the separate samples, we report only the combined models here.

Logistic regression equations controlled for the woman's age, years of education, marital status, and household income. To control for the overall utilization of health care, we also covaried number of doctor visits for the previous year. All of these factors are strongly associated with health care access in the general population (U.S. Department of Health, 2000). For the analyses of satisfaction with care, only the women with cognitive limitations who served as respondents were examined. For the health care access analyses, all sample women were analyzed. We modeled separate analyses for the health care access of self-respondents, but the trends and results were the same, so we present the entire sample results here.

These data and results were weighted to reflect undercoverage and nonresponse, each respondent's probability of selection, as well as the age, gender, and ethnic or racial distribution of the U.S. Census estimates for the respondent. The results of the present study can be generalized to the noninstitutionalized, civilian population of working-age women with and without cognitive disabilities living in the United States between 2000 and 2002. It is important to note that these results cannot be generalized to the population of women living in community or institutional residential facilities.

Results

The results of the analyses related to health care access are presented in Table 2, which displays odds ratios (ORs), 95% confidence intervals for the women with disabilities. Wald F scores for the main effect of disability and p values for the 6 measures of health care access and the 5 measures of satisfaction with health care. All models controlled for the age of the woman, her years of education, household income, marital status, and number of doctor visits the previous year (covariate data are shown below the Wald F scores for the disability effects).

Potential access to health care was measured by whether the two groups of women had a usual source of care or were without health insurance for the previous 12 months. There were no statistically significant differences between groups in the likelihood of having a usual source of care. Women with cognitive limitations were less likely to have been uninsured for the entirety of the previous year, OR = 0.56, F(6) = 4.13, p < .05.

Mixed results were obtained in terms of the women's realized access, the second conceptual aspect of health care. As measured by having had a Pap test within the last 12 months, a statistically significant difference was found in receipt of preventive screenings for cervical cancer: Women with cognitive limitations were much less likely than were nondisabled women to have had a Pap test within the last year, OR = 0.28, F(6) = 35.42, p < .001. Women with cognitive limitations were also less likely to have received a mammogram in the last year, OR = 0.55, F(6) = 9.14, p < .001. However, they were approximately 60% more likely than nondisabled women to have received a flu shot in the last year, OR = 1.60, F(6) = 7.53, p < .05. We found no statistically significant differences in the likelihood of receiving a routine checkup in the previous 12 months.

Table 3 delineates the results related to the women's reported satisfaction with care. The women with cognitive limitations were more likely to be dissatisfied on four measures, and a trend toward greater dissatisfaction was found on the fifth measure.

Table 3

Weighted Odds Ratios (95% Confidence Intervals) for Cognitive Disability Status in Satisfaction With Health Care Among U.S. Women Aged 18–64, 2000 & 2002

Weighted Odds Ratios (95% Confidence Intervals) for Cognitive Disability Status in Satisfaction With Health Care Among U.S. Women Aged 18–64, 2000 & 2002
Weighted Odds Ratios (95% Confidence Intervals) for Cognitive Disability Status in Satisfaction With Health Care Among U.S. Women Aged 18–64, 2000 & 2002

When compared to their nondisabled counterparts, women with cognitive impairments were 49% less likely to report that their doctors showed them respect, OR = 0.51, F(6) = 4.34, p < .05, and they were 41% less likely to report that their careprovider listened to them, OR = 0.59, F(6) = 5.54, p < .05. Women with cognitive limitations were 48% less likely to report that their doctor spent sufficient time with them, OR = 0.52, F(6) = 10.71, p < .001. In terms of getting medical appointments when wanted, there was a 47% reduction in the likelihood that the women with disabilities were satisfied, OR = 0.53, F(6) = 10.96, p < .001. A trend-level difference was found in the women's satisfaction with the way their physician explained things, OR = 0.61, F(6) = 3.99, p < .10.

Discussion

Strengths and Limitations

One caveat related to the design of the Medical Expenditure Panel Survey must be considered in order to fairly interpret these findings. As previously mentioned, cognitive disability was defined in the survey by answers of yes to any component of a three-part question. Although this is a commonly employed measure of cognitive disabilities, it is not a precise substitute for the traditional diagnostic label of mental retardation or developmental disabilities. There are likely women in the sample who had dementia and not developmental disabilities, although by restricting the age of the sample to working-age women (aged 18 to 64), we reduced this possibility. Furthermore, there is a strong likelihood that the women in this study faced the same health care issues as women who have mental retardation. This is likely true, first, because most women with developmental disabilities live in community settings (Fujiura, 1998), as does this community-dwelling sample. Second, the characteristics of traditional developmental disabilities are very similar to the characteristics of persons with dementia: limited receptive and expressive communication skills, comprehension difficulties, and cognitive processing challenges. As such, women with developmental disabilities and women with cognitive limitations likely face similar difficulties communicating effectively with their health careproviders, following care recommendations, and understanding treatment.

There are clear limitations in the generalizability of the present study. Some women with the most severe cognitive impairments for whom a proxy respondent could not be found were likely excluded, and we cannot generalize to their experiences here. In addition, it is possible that some of the women with disabilities did not understand the questions related to receipt of Pap tests. However, it is not clear that a failure to understand the question would have biased the results in either direction.

In addition, the Medical Expenditure Panel Survey does not allow for the stratification of women by the severity of their cognitive limitations. Therefore, we were unable to identify the ways in which access to health care varies with the severity of a woman's impairment.

One final limitation is the fact that women living in community care or institutional facilities were not sampled. Many women live in these settings, but we were unable to evaluate their experiences. Despite these limitations, the present study contributes to the existing body of evidence concerning health care access for women with cognitive limitations.

A specific strength of the present analysis is the use of the Medical Expenditure Panel Survey data. Because we employed this nationally representative survey, our findings are generalizable to the population of working-age women with cognitive limitations. In addition, the survey oversampled African Americans, Latinos, and people living in low-income households. The use of a sample that is population-based, instead of one restricted to service users, strengthens the generalizability of the results.

One final strength of the present study lies in the fact that the satisfaction measures were answered by the women with disabilities themselves. As such, these findings do not represent the satisfaction that family caregivers have with careproviders, but the women's own perceptions of the care they receive.

Among the general population, potential access to health care is a strong and consistent indicator of receiving care when it is needed (Department of Health and Human Services, 2000). However, the present study findings indicate that these typical patterns for realized care do not hold true for women with cognitive limitations. This finding is consistent with previous research (Altman, 1997;Parish & Huh, 2006). In the present study we found that insurance coverage and having a usual source of health care are not sufficient to ensure that women with cognitive disabilities receive reproductive health care, in particular. Although women with cognitive limitations received routine check-ups at similar rates to the nondisabled population—and had better rates of receipt of flu shots—considerable disability-based disparities were evident in the receipt of Pap tests and mammograms for cancer screening. These findings related to reproductive health care are consistent with those of previous researchers (e.g., Havercamp et al., 2004; Kopac et al., 1998; Lewis et al., 2002).

A number of factors may underpin the reduced rate of Pap tests received by this population. We speculate here on the most probable. The substantially reduced likelihood of Pap tests may be related to physicians' misperceptions of the risk of cervical cancer for women with cognitive limitations. The sexuality of women with mental impairments remains a contentious issue (Parish, 2002). Physicians who feel that these women are asexual may feel that the women do not require Pap tests as regularly as nondisabled women. This is troubling on two fronts. First, the screening guidelines of the American College of Obstetricians and Gynecologists (2003) recommend that all women begin yearly screenings for cervical cancer no later than age 21, regardless of their sexual history. These guidelines, issued in 2003 (and after these data were collected), permit Pap tests every 2 or 3 years after a woman reaches age 30, and if she has 3 consecutive years of negative screenings. At the time these data were collected, however, annual exams were recommended for all women over age 21.

A second problematic aspect of the reduced likelihood of Pap tests for women with cognitive limitations is that there is considerable evidence that these women are increasingly sexually active. Unlike in the past, when segregation in institutions was purported (and promoted) to prevent these women from having sexual activity, the vast majority of the population currently lives in the community. Although the prevalence rate of sexual activity among women with cognitive disabilities is unknown, it would obviously be unwise to fail to screen women with cognitive impairments for cervical cancer on the basis of outdated notions of their sexuality. Further, as horrific situations like the violent gang rape of a Glen Ridge New Jersey woman remind us, women with cognitive disabilities remain vulnerable to exploitation and coercive intercourse.

It is also possible that physicians and other health careproviders are responding to the increased fears that women with cognitive impairments have regarding pelvic exams, which have been well-documented (Contraception Report, 1997). However, thoughtful care practices can mitigate some of women's anxiety, including having supportive careproviders who offer kindness and are committed to counseling and education. Counseling sessions provided in advance of the actual pelvic exam, and in language that is easily understood, are useful. Educational materials designed for nonreaders and anatomic models can be employed successfully. If traditional exams are absolutely not possible, ultrasound or sedation may be required (Contraception Report, 1997).

In terms of the substantially reduced likelihood of receiving mammography for women with cognitive limitations, a further caution is warranted. The risk of breast cancer is elevated in women who have not been pregnant (Hulka & Moorman, 2001). Although credible estimates of the prevalence of pregnancy or childbirth are not available for the population of women with cognitive limitations, it is likely that they have reduced rates of pregnancy, due to their increased isolation and the social controls that prevent them from having sexual relationships. As such, women with cognitive limitations may actually be at increased risk of developing breast cancer. Physicians and other careproviders should, therefore, take steps to ensure that they adhere to the mammography guidelines they follow for nondisabled women.

Our finding of greater levels of dissatisfaction with their careproviders corroborates existing evidence that women with disabilities feel marginalized by careproviders, who often have pejorative attitudes toward disability (e.g., Gill, Kirchner & Reis, 1994; Nosek et al., 1995).

The present study does not allow us to draw specific conclusions about the origins of these markedly worse reproductive cancer-screening outcomes for women with cognitive limitations. However, a firm connection between satisfaction with care and receipt of preventive care has been established in the research on the general population (Department of Health and Human Services, 2000). As such, we speculate that the dissatisfaction these women report may contribute to their reduced likelihood of receiving cervical and breast cancer screenings.

Conclusions

Women with cognitive disabilities comprise a substantial portion of the U.S. population (Department of Health and Human Services, 2002), and it is essential to understand how their health care needs can be fully met. Furthermore, it is important to understand the specific experiences of women with cognitive disabilities because they typically face significant challenges in securing appropriate health care (Department of Health and Human Services, 2002). Determining the health care experiences of specific subgroups of the population with disabilities can assist policymakers to fulfill the aims of Healthy People 2010 by efficiently targeting resources to end health care disparities. Results of the present study provide evidence about the health care experiences of women with cognitive disabilities garnered from a national sample that included not only individuals receiving Medicaid or long-term care services, but also the general population living in the community.

Our findings that women with cognitive impairments have worse health care access for breast and cervical cancer screening and, further, report dissatisfaction with their health careproviders have important implications for researchers and for policymakers. Further research is needed to identify the specific barriers these women face, and why such patterns of care persist. Addressing these health care disparities will require carefully targeting public policies and resources, which must be based on a foundation of sound empirical research.

Targeted federal initiatives have been successful in improving rates of breast and cervical cancer screening for low-income women and women of color (Centers for Disease Control & Prevention, 2004). The Centers for Disease Control (2004) was authorized through the Breast and Cervical Cancer Mortality Prevention Act of 1990 to aggressively promote these screenings for unserved low-income women. This initiative has been very successful in expanding screening for cervical and breast cancers among low-income women, particularly women of color (Department of Health and Human Services, 2000). Given the markedly worse screening outcomes for women with cognitive limitations, a similar federal initiative seems warranted.

Increasingly, health care recipients are expected to be active partners with their careproviders— communicating effectively and advocating for themselves to ensure that their care needs are met. Women with cognitive disabilities, given the nature of their impairments, typically require ongoing support and assistance to become such partners. Families, advocates, support staff, and the women themselves cannot assume that having a medical careprovider or receiving routine check-ups ensures that they receive preventive health screening tests such as Pap smear tests and mammograms. These findings of substantive disability-based disparities indicate that the people providing support may need to assertively advocate and ensure that women with cognitive limitations receive clinically recommended preventive procedures.

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The authors thank the three anonymous reviewers of an earlier draft for their thoughtful suggestions. Support for this research was provided, in part, by an award to the first author from the University Research Council of the University of North Carolina at Chapel Hill.

Author notes

Authors: Susan L. Parish, PhD (parish@email.unc.edu), Assistant Professor, School of Social Work, University of North Carolina at Chapel Hill, 301 Pittsboro St., CB 3550, Chapel Hill, NC 27599-3550. Alison Whisnant Saville, MSW, MSPH, Coordinator, Cape Fear Healthy Carolinians, 1543 Westprong Way, Wilmington, NC 28403