Recommendations on Standards for the Design of Medical Diagnostic Equipment for Adults with Disabilities, Advisory Committee Final Report

2.1 Health Care Experiences of Persons with Disabilities

The approximately 57 million U.S. residents living with disabilities vary widely in the nature of the conditions underlying their disabilities and their overall health care needs. On one level, most persons with disabilities require the same services recommended for all individuals to maintain their health and diagnose diseases at early, more treatable stages, such as the screening and preventive services recommended by the U.S. Preventive Services Task Force. ^A Many persons also require specific diagnostic and therapeutic services because of the health conditions causing their functional impairments and disability. Other persons might need diagnostic testing or therapeutic treatments to address secondary disabilities or conditions related to their primary disabilities. ^B In addition, as they age, persons with disabilities experience many of the same chronic conditions as do others in late middle-age and older years, such as hypertension, diabetes, cardiovascular and pulmonary diseases, and cancers, necessitating the full range of diagnostic and therapeutic health care services.

Regardless of their health care needs, persons with disabilities are particularly susceptible to experiencing substandard care. Reasons for quality shortfalls run the gamut, from: clinicians’ failures to understand the values, preferences, needs, and expectations of persons with disabilities for their health care (such failures contribute to inadequate or faulty communication, which can compromise care); to financial barriers caused by insufficient or missing health insurance coverage; to inaccessible buildings and medical equipment. In 2000, Healthy People 2010 from the U.S. Department of Health and Human Services, which sets decennial national health priorities, cautioned that "as a potentially underserved group, people with disabilities would be expected to experience disadvantages in health and well-being compared with the general population." ¹ The report asserted that common misconceptions about people with disabilities contribute to troubling disparities in the services they receive, especially due to an "underemphasis on health promotion and disease prevention activities."

Numerous other federal reports have highlighted concerns about health care disparities among persons with disabilities. On July 26, 2005, the fifteenth anniversary of the signing of the Americans with Disabilities Act (ADA, P.L. 101-336), the U.S. Surgeon General issued a Call to Action, warning that people with disabilities can lack equal access to health care and urging their inclusion in studies of health care disparities. ² The National Healthcare Disparities Reports, released annually by the Agency for Healthcare Research and Quality examine disparities in health ³ and dental ⁴ care for persons with disabilities, among other populations that experience disabilities (e.g., racial and ethnic minorities). ^C In its 2009 report, the National Council on Disability echoed concerns about health care disparities among persons with disabilities, but underscored the need to gather better data on this issue. ⁵ The current iteration of Healthy People – Healthy People 2020, the decennial report from the U.S. Department of Health and Human Services that identifies national health improvement priorities for 2010 through 2020 – continues to note health care disparities for persons with disabilities. Among its various objectives for this population, Healthy People 2020 includes decreasing barriers within health care facilities (www.healthypeople.gov/2020).

A growing body of research documents the specific health care disparities experienced by persons with disabilities. Systematically examining this evidence is beyond the scope of this report, but to provide context for later discussions about MDE, we provide one example that exemplifies this research – findings from the National Health Interview Survey (NHIS) ^D about mammography screening and Pap testing among women with and without disabilities. ⁶ As shown in Table 2.1, women with self-reported disabilities of different types are substantially less likely than other women to receive these critical screening tests. Among women who self-report mobility difficulties, screening rates fall linearly as the severity of mobility limitations increases. For women reporting the most severe mobility limitations, only 54.9% and 54.2% receive mammography and Pap tests respectively, compared with 74.4% and 82.5% respectively for women reporting no disability.

The NHIS does not ask survey respondents why they do not receive these screening services. Many factors could explain these disparities, including differing health priorities and persons’ preferences for care. ^E Additional considerations include financial access disparities (e.g., inadequate or absent insurance coverage), transportation problems, and other socioeconomic discrepancies. However, especially for women with mobility disabilities, one explanation is physical barriers to accessing medical equipment, such as examination tables and mammography machines.

Table 2.1

Rates of Mammography and Pap Testing Among
Women with and without Different Disabling Conditions

*Women age 50 and older **Women age 18 and older
ADAPTED FROM: Altman B, Bernstein A. Disability and Health in the United States, 2001-2005. Hyattsville, MD: National Center for Health Statistics; 2008

The consequences of these health care disparities for persons with disabilities have not yet been fully explored. Healthy People 2010 speculated about the potential for disadvantages in health and well-being for persons with disabilities.¹ The possibilities of diagnostic delays and poor patient outcomes from lower use of highly-rated tests like mammography and Pap testing seem clear. More studies are needed to quantify precisely how health care disparities affect the longevity, health, well-being, and quality of life of persons with disabilities.

Notes

^A As for persons without disabilities, individual patients with disabilities have their own set of health conditions, including coexisting diseases and health risk factors that might affect the cost-benefit equation of obtaining various health care services. For example, although the U.S. Preventive Services Task Force gives colonoscopy screening to detect colorectal cancers a Grade A (service recommended: high certainty that the net benefit of the service is substantial), individual patients might determine in consultation with their physicians that the clinical risks of the bowel cleansing process required before colonoscopy outweigh the potential benefit of the test in their particular case. This decision should be based on clinical considerations and informed patients’ preferences, not on the inability to accommodate the needs of persons with disabilities during the bowel preparation.

^B Secondary disabilities are conditions or complications that are related to a person’s primary disability and are also potentially disabling. Examples include injuries from falls, pressure ulcers, urinary tract complications, and depression.

^C Each year, the National Healthcare Disparities Reports look at different measures of disparities, such as different types of service use or different measures of patients’ experiences with care.

^D The National Health Interview Survey is a continuous federal survey overseen by the National Center for Health Statistics within the Centers for Disease Control and Prevention (CDC). Over the years, NHIS has been a major source of information about health care disparities for persons with disabilities among other vulnerable populations.

^E Although the U.S. Preventive Services Task Force recommends mammography screening (for women ages 50-74 years old) and Pap smears (for women < age 65 who have been sexually active and have a cervix) with Grade B and Grade A evidence, respectively, these recommendations relate to broad populations of women. For each specific woman, the choices about whether to receive these screening services must be assessed based on her individual circumstances. For instance, women with severe, coexisting health conditions and high health risks may decide, in consultation with their physicians, that they will not benefit from this screening and choose not to have the tests.

Section 2: References

^1. U.S. Department of Health and Human Services. Healthy People 2010. Second Edition, Understanding and Improving Health and Objectives for Improving Health. Second Edition ed. Washington, D.C.: U.S. Government Printing Office; 2000.

^2. U.S. Department of Health and Human Services. The Surgeon General's Call to Action to Improve the Health and Wellness of Persons with Disabilities. Washington, D.C.: Public Health Service, Office of the Surgeon General; 2005.

^3. Agency for Healthcare Research and Quality. 2009 National Healthcare Disparities Report. Vol AHRQ Publication No. 10-0004. Rockville, MD: U.S. Department of Health and Human Services; 2010.

^4. Agency for Healthcare Research and Quality. 2010 National Healthcare Disparities Report. Vol AHRQ Publication No. 11-0005. Rockville, MD: U.S. Department of Health and Human Services; 2011.

^5. National Council on Disability. The Current State of Health Care for People with Disabilities. Washington, DC: National Council on Disability; 2009.

^6. Altman B, Bernstein A. Disability and Health in the United States, 2001-2005. Hyattsville, MD: National Center for Health Statistics; 2008.