TY - JOUR
AU - Iezzoni, Lisa I.
AB - The following 3 cases represent substandard care for patients with disabilities, yet they occurred recently at US tertiary care medical centers with the latest technologies and well-qualified physicians. These failures resulted from basic, “low-tech” structural deficiencies—lack of accessible call systems, diagnostic equipment, and examination tables. Joe is paralyzed, dependent on a ventilator, and unable to speak. His hospital room was at the end of the corridor and had no accessible call system to summon assistance. When his ventilator became disconnected and then was not promptly recognized, Joe became extremely anxious about being in a hospital. Susan, who uses a wheelchair, had trouble breathing. She needed an echocardiogram, which was performed while she sat in her wheelchair. The echocardiogram was of poor technical quality and yielded little information. Chuck has paraplegia and new rectal bleeding. The gastroenterologist refused to perform a diagnostic flexible sigmoidoscopy because the office did not have wheelchair-accessible examination tables or lifting provisions. He sent Chuck home with 3 hemoccult cards. Despite passage of the Americans with Disabilities Act (ADA) in 1990, inaccessible facilities, equipment, and communication systems still compromise health care experiences for individuals with disabilities in the United States.1-3 Although no direct evidence currently exists about the population prevalence of these problems nationwide, increasing numbers of legal cases, small studies, and circumstantial evidence point to widespread access barriers for patients with disabilities within US health care settings. This commentary reviews the legal and policy contexts for ensuring physical accessibility to health care facilities and also considers potential effects of environmental barriers on patient safety, quality of care, and health care worker safety. These contexts involve 3 fundamental concepts. First, environmental barriers contribute significantly to disability.3 Second, the architectural notion that form follows function holds important implications for health care, where creation of therapeutic environments is a core value. The barriers that disabled patients confront represent quality problems and also heighten patients' sense of stigmatization, disenfranchisement, and demoralization.4 And third, the concept of universal design, human-centered design that keeps all potential users in mind,3 recognizes the diversity of patient populations, health care professionals, other workers, and all individuals using these environments. Just as health care has worked toward achieving racial, ethnic, and cultural diversity, the time has come to embrace bodily diversity. Instead of sorting into binary categories of able vs disabled, bodies fall along continua of shapes, sizes, and abilities. Universal design asserts that designs that work well across functional abilities perform better for all users. Legal and Policy Contexts According to its introduction, the ADA (Public Law 101-336, 101st Cong, 2d sess, July 26, 1990) aims “to provide a clear and comprehensive national mandate for the elimination of discrimination against individuals with disabilities.” Unlike other civil rights mandates, the ADA requires public and private entities to make “reasonable accommodations” to prevent discrimination against individuals with disabilities. Title III identifies private health care facilities as places of public accommodation subject to ADA requirements. Providing details about specific ADA requirements is beyond the scope of this article, as is describing numerous state and other federal laws governing disability access. However, the ADA is not self-executing; when compliance is not voluntary, enforcement is dependent on complaints or litigation. An increasing number of legal actions have targeted health care professionals and organizations, including about 157 cases settled by the US Department of Justice between 1994 and 2006.5 Fifty-one of these cases involved inaccessible health care environments or medical equipment.5 Two highly publicized lawsuits involved complaints about physical access for patients with disabilities against Kaiser Permanente in California (2001 settlement)6 and the Washington Hospital Center in Washington, DC (2005 settlement).7 Kaiser's settlement (a private litigation case) was the first sweeping judgment to address inaccessible equipment, environments, and policies involving a health care system. In the Washington Hospital Center lawsuit, plaintiffs' allegations included concerns that they were asked to use inaccessible equipment, were lifted onto tables improperly, waited much longer than other patients for accessible equipment, and were given no accessible call buttons and telephones. Both settlements required substantial changes to the built environments, enhanced accessibility of medical equipment, and the training of staff in disability awareness (Box). Environment of Care Accessible parking, entryways, and public bathrooms At least 1 accessible examination room ADA officer ADA complaint line Environment of care ADA committee Advisory group of persons with disabilities Architectural barrier survey and plan For further information† Department of Veterans Affairs; Barrier Free Design Guide; http://www.va.gov/facmgt/standard/dguide/barrfree.doc CDC guidelines for making health settings and information accessible; http://www.cdc.gov/ncbddd/dh/accessibilityguides.htm#healthcare Disability Rights Advocates Web site, Metzler v Kaiser; http://www.dralegal.org/cases/health_insurance/metzler_v_kaiser.php US Dept of Justice Washington Hospital Center Agreement; http://www.usdoj.gov/crt/ada/whc.htm North Carolina State University Center for Universal Design; http://www.design.ncsu.edu/cud/about_ud/about_ud.htm Equipment Recommendations ADA equipment officer At least 1 accessible table or chair per department At least 1 lift or transfer device per department At least 1 accessible scale At least 1 accessible mammography machine For further information† Center for Disability Issues in the Health Professions; http://www.cdihp.org/ Disability Rights Advocates Web site, Metzler v Kaiser; http://www.dralegal.org/cases/health_insurance/metzler_v_kaiser.php US Dept of Justice Washington Hospital Center Agreement; http://www.usdoj.gov/crt/ada/whc.htm Staff Training Include persons with disabilities in developing a training curriculum on disability etiquette and awareness Provide ongoing training to all medical and support staff who work with patients For further information† World Institute on Disability access to medical care for adults with disabilities; http://www.wid.org/training/#cchc Center for Disability Issues in the Health Professions; http://www.cdihp.org/ Health care access white paper: It Takes More Than Ramps; http://www.ric.org/community/RIC_whitepaperfinal82704.pdf Disability Rights Education and Defense Fund; http://dredf.org Abbreviation: ADA, Americans with Disabilities Act. *These recommendations are partially adapted from settlement agreements involving Kaiser Permanente5 and the Washington Hospital Center.7 †All Web-based resources were last accessed January 1, 2007. Although the ADA and its regulations create an important foundation of basic requirements for accessibility, its provisions are insufficient for making health care facilities comfortable and safe for individuals with disabilities. As the US Surgeon General asserted, ensuring physical access for persons with disabilities requires more attention in health care settings.2 After analyzing needs, the Department of Veterans Affairs produced the Barrier Free Design Guide for its health care facilities, with standards that either meet or exceed Uniform Federal Accessibility Standards.8 While litigation and policy efforts are important, they are hardly sufficient. Although litigation can eliminate systemic access barriers, filing legal complaints is generally burdensome and unrealistic for individual patients confronting immediate access problems. Litigation is expensive, contentious, and time-consuming, and immediate patient needs are not addressed. Physical access to health care services is not just a civil right, it also affects patient safety, quality of care, health care worker safety, and even financial bottom lines. The best impetus for change would result not from litigation, regulation, or other outside forces, but from within the health care system. Patient Safety Patients with disabilities may face risk of injury through neglect, delayed diagnoses, or inadequate treatment. Patients are also at risk when unskilled health care workers attempt to transfer them, when examination tables are too high or insufficiently padded, and when bathrooms and showers do not have safety features such as grab bars, raised toilet seats, or shower chairs. As happened when a patient with tetraplegia fell from an examination table and died, such injuries can be life-threatening and costly, leading to expensive malpractice settlements.9 Fractures, nerve and soft tissue injuries, and shoulder subluxations can result from unsafe transfer techniques.10 While physical injuries are obvious, inaccessible environments can cause covert psychological harms. Persons with disabilities report social messages they internalize when doors have no automatic openers, examination tables are too high, call systems are inaccessible, and other barriers confront them.11 Such patients may feel “abnormal,” deficient, disempowered, or weak. Such internalized oppression, particularly when individuals are experiencing illness or injury, when their identities are fragile and in flux, can add unnecessary distress. At a minimum, such messages are not therapeutic, producing a preventable harm. Quality of Care Several studies have identified significant disparities in health care services for individuals with disabilities.12,13 According to nationwide survey data, women with major mobility problems (eg, users of wheelchairs, scooters, or unable to walk one quarter mile, stand 10 minutes, or climb 10 stairs) were much less likely to have received a Papanicolaou test in the last 3 years (63.3%) vs women without mobility problems (81.4%; adjusted odds ratio, 0.6; 95% confidence interval, 0.4-0.9).12 Only 45.3% of women with major mobility impairments reported having had a mammogram in the prior 2 years vs 63.5% of women without mobility impairments (adjusted odds ratio, 0.7; 95% confidence interval, 0.5-0.9).12 In a 2002-2003 survey of Los Angeles County residents with disabilities (N = 1333; response rate, 57.7%), 22% reported difficulty accessing clinicians' offices because of the physical layout or environment and 13% felt they were treated unfairly because of their disability.14 Those who self-identified as black, having more severe disabilities, and lower incomes were more likely to report access difficulties. Disparities also occur in the treatment phase of illness. In a retrospective observational study of 100 311 women with stage I to stage IIIA breast cancer, those with disabilities (2800) were much less likely than other women to receive radiotherapy following breast-conserving surgery (74.8% vs 81.9%; adjusted relative risk, 0.83; 95% confidence interval, 0.77-0.90)15 Many potential reasons might explain these disparities including absent or inadequate health insurance, patient preferences, inaccessible transportation, and attitudinal bias. Nonetheless, architectural barriers and inaccessible equipment also may contribute.16 Health Care Worker Safety Health care workers commonly experience overexertion injuries, often while transferring patients, with back injuries the most common.17 In a 2006 survey, 38% of 509 nurses and 42% of 404 radiology technicians reported having experienced lifting-related injuries; in the prior 2 years, the physical demands of their jobs caused 47% of nurses and 30% of radiology technicians to consider leaving patient care.18 Injuries and chronic pain also translate into lost work days; 24% of nurses and 20% of radiology technicians reported losing work time due to work-acquired pain and injuries.18 Nursing aides, orderlies, and attendants face particularly high risks for overexertion injuries and are approximately 3.5 times more likely to lose work days from injuries and illnesses compared with average private industry workers.17 Indeed, these occupations account for the third highest number of injuries and illnesses ranking behind laborers, truck drivers (heavy and tractor-trailer), and freight, stock, and material movers with a median of 5 days lost from work per year.19 Lack of transfer equipment (eg, lifts, adjustable-height tables) contributes to this. An ergonomic study of lifting techniques found that bed/wheelchair and commode/room chair transfers were difficult to perform safely, even with 2 persons lifting.20 Given these important problems, Occupational Safety and Health Administration guidelines recommend minimizing manual lifting of patients and eliminating it whenever possible. Increasing obesity rates underscore the urgency of transfer safety for patients and staff.3 Programs that encourage use of lifting devices and staff training have demonstrated significant cost savings through reduced workers' compensation claims, medical treatment, staff turnover, and lost work days.21 Texas and Washington State have recently passed safe patient lifting laws, which require implementation of such procedures. Smart Business In addition to meeting therapeutic, humanistic, and civil rights imperatives, improving physical access in health care settings makes smart business sense. The population is aging, with the proportion of individuals older than 65 years of age having increased from 12.4% in 2000 to an expected 20% in 2030.22 Aging contributes importantly to disability (defined as functional, mobility, cognitive, activity of daily living, and instrumental activity of daily living limitations) with disability rates at approximately 55% for persons aged 65 years and older and increasing to 74% among individuals aged 80 years and older.23 Individuals with disabilities use more health care services than do others, with adults with functional limitations (defined as those who require mobility aids or equipment; have difficulty stooping, bending, lifting, facilitating activity of daily living, instrumental activity of daily living, or other major life activity restrictions) accounting for one third of physician visits, 62% of hospital days, and 46% of adult-related health care expenditures.24 In 2001, median total health care expenditures were $1885 for persons aged 65 years and older without sensory or physical impairments, compared with $5317 for same-aged persons reporting major impairments.3 Therefore, clinicians can expect to see increasing numbers of patients with disabilities at potentially higher costs in coming years. The ADA requires all newly constructed facilities and renovated portions of existing facilities to meet physical accessibility requirements, and stipulates that existing facilities satisfy access standards when doing so is “readily achievable.” Planning from the start to make structures accessible is almost always less expensive than retrofitting later. Little current information is available about costs of structural accessibility adaptations, but older studies suggest additional expense of less than 1% of total new facility construction costs when plans are made up front.25 Many useful accommodations are low tech, common sense, and inexpensive, such as rearranging furniture, installing grab bars, or offsetting door hinges to widen a doorway.3 The Internal Revenue Service offers tax deductions or credits in certain circumstances to cover disability accessibility expenditures. Additional costs may be at least partially offset by improved staff efficiency, decreased employee and patient injuries, and decreased litigation costs. The universal design movement is now entering health care and could significantly improve accessibility in the future. This mindset strives to design “products and environments to be usable by all people, to the greatest extent possible, without the need for adaptation or specialized design.”3 Designers are creating universal medical equipment, such as accessible examination tables and mammogram machines that can be used by everyone. As health care facilities managers renovate structures, construct new buildings, and purchase equipment and furnishings, they should remember legal requirements as well as health care's therapeutic mission. Environments with barriers will not foster healing and could endanger the safety and experiences of patients and employees. Form follows function. Healing, not handicapping, should guide design of environments to ensure health care access for all persons. Back to top Article Information Corresponding Author: Kristi L. Kirschner, MD, Rehabilitation Institute of Chicago, 345 E Superior St, Room 1136, Chicago, IL 60611 (kkirschner@ric.org). Author Contributions: Dr Kirschner had full access to all of the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis. Study concept and design: Kirschner, Breslin, Iezzoni. Acquisition of data: Kirschner, Breslin, Iezzoni. Analysis and interpretation of data: Kirschner, Breslin, Iezzoni. Drafting of the manuscript: Kirschner. Critical revision of the manuscript for important intellectual content: Breslin, Iezzoni. Administrative, technical, or material support: Kirschner, Breslin, Iezzoni. Study supervision: Iezzoni. Financial Disclosures: Dr Kirschner reports no financial conflicts of interest. She reports having been an expert witness in several disability civil rights cases (pro bono) and speaking widely on issues relating to health care access for persons with disabilities (occasionally receiving honoraria for these presentations). Ms Breslin reports that her employer, the Disability Rights Education and Defense Fund, will enter into an $18 000 contract with the San Francisco Health Plan in 2007 to provide consultation on improving programmatic and architectural accessibility among its network of health care providers. In her role as senior policy advisor for the Disability Rights Education and Defense Fund, Ms Breslin will serve as a salaried staff person who will consult with the San Francisco Health Plan, but she will receive no funds directly from the San Francisco Health Plan for this work. Dr Iezzoni reports receiving research grant funding from federal and foundation sources to study topics relating to disability. She speaks widely on issues relating to health care quality and access for persons with disabilities, including talks about universal design in health care. She occasionally receives honoraria for these presentations. She has published 2 books on this topic (When Walking Fails and More Than Ramps), for which she receives royalty payments. In 2005, the housing division of the US Department of Justice hired her as an expert in a case involving disability access; she received compensation for preparing an expert report and consulting with US Department of Justice attorneys. Dr Iezzoni volunteers on the board of trustees of the Boston Center for Independent Living and on the board of directors of the Commonwealth Care Alliance, which offers health plans for persons with disabilities. Acknowledgment: We thank Judith Panko Reis, MA, MS, director of the Rehabilitation Institute of Chicago Women with Disabilities Center, for her assistance with the conception of the manuscript, the literature review, and the construction of box resources; Katrina Bullock, business support manager, Rehabilitation Institute of Chicago Women with Disabilities Center, for her technical assistance with the box; and Carmen Cicchetti, MA, MEd, business support manager, Rehabilitation Institute of Chicago Donnelley Family Disability Ethics Program, for his assistance with the literature research. None of these contributors received additional compensation beyond their usual salary. References 1. Panko Reis J, Breslin ML, Iezzoni LI, Kirschner KL. It Takes More Than Ramps to Solve the Crisis of Healthcare for People with Disabilities. Chicago, Ill: Rehabilitation Institute of Chicago; 2004. http://www.ric.org/community/RIC_whitepaperfinal82704.pdf. Accessed December 29, 2006 2. US Department of Health and Human Services; Office of the Surgeon General. The Surgeon General's Call to Action to Improve the Health and Wellness of Persons with Disabilities. Washington, DC: US Dept of Health and Human Services; 2005. http://www.surgeongeneral.gov/library/disabilities/calltoaction/calltoaction.pdf. Accessed December 21, 2006 3. Iezzoni LI, O’Day BL. More Than Ramps: A Guide to Improving Health Care Quality and Access for People With Disabilities. New York, NY: Oxford University Press; 2006 4. Iezzoni L. When Walking Fails: Mobility Problems of Adults With Chronic Conditions. Berkeley: University of California Press; 2003 5. US Department of Justice. Enforcing the ADA: status reports from the Department of Justice, Washington, DC, April 1994-March 2006. http://www.usdoj.gov/crt/ada/statrpt.htm. Accessed February 2, 2007 6. Disability Rights Advocates. Settlement agreement: Metzler et al v Kaiser Foundation Health Plan, Inc, et al. http://www.dralegal.org/cases/health_insurance/metzler_v_kaiser.php. Accessed January 1, 2007 7. US Department of Justice. Settlement agreement: Disability Rights Council et al v Washington Hospital Center, case number 1:03CV02434. http://www.usdoj.gov/crt/ada/whc.htm. Accessed January 1, 2007 8. Department of Veterans Affairs. Barrier free design guide: a supplement to the Uniform Federal Accessibility Standards, April 2006. http://www.va.gov/facmgt/standard/dguide/barrfree.doc. Accessed December 22, 2006 9. Nursing Law Legal Eagle Eye Newsletter. Quadriplegic falls from exam table: court finds nurse and doctor negligent, 2004;12(6). http://www.nursinglaw.com/Jun04PageOne.PDF. Accessed December 22, 2006 10. Nelson A, Baptiste A. Evidence-based practices for safe patient handling and movement. Online J Issues Nurs. 2004;9:415482090Google Scholar 11. Drainoni M, Lee-Hood E, Tobias C, Bachman S, Andrew J, Maisels L. Cross-disability experiences of barriers to health-care access. J Disabil Policy Stud. 2006;17:101-115Google ScholarCrossref 12. Iezzoni LI, McCarthy EP, Davis RB, Siebens H. Mobility impairments and use of screening and preventive services. Am J Public Health. 2000;90:955-96110846515Google ScholarCrossref 13. Chan L, Doctor JN, MacLehose RF. et al. Do Medicare patients with disabilities receive preventive services? Arch Phys Med Rehabil. 1999;80:642-64610378489Google ScholarCrossref 14. Centers for Disease Control and Prevention. Environmental barriers to health care among persons with disabilities—Los Angeles County, California, 2002-2003. MMWR Morb Mortal Wkly Rep. 2006;55:1300-130317159832Google Scholar 15. McCarthy EP, Ngo LH, Roetzheim RG. et al. Disparities in breast cancer treatment and survival for women with disabilities. Ann Intern Med. 2006;145:637-64517088576Google ScholarCrossref 16. Kroll T, Jones GC, Kehn M, Neri MT. Barriers and strategies affecting the utilization of primary preventive services for people with physical disabilities: a qualitative inquiry. Health Soc Care Community. 2006;14:284-29316787479Google ScholarCrossref 17. State of California Occupational Safety and Health Administration. Back injury prevention guide for health care providers. http://www.dir.ca.gov/dosh/dosh_publications/backinj.pdf. Accessed December 22, 2006 18. Peter D. Hart Research Associates, Inc. Safe patient handling: a report based on quantitative research among nurses and radiology technicians (conducted on behalf of AFT Healthcare) 2006. http://www.aft.org/topics/no-lift/download/PeterHartSurvey-final-03-16-06.pdf. Accessed January 17, 2007 19. Bureau of Labor Statistics. Nonfatal occupational injuries and illnesses requiring days away from work, 2005. United States Department of Labor News. http://www.bls.gov/news.release/pdf/osh2.pdf. Accessed January 20, 2007 20. Marras WS, Davis KG, Kirking BC, Bertsche PK. A comprehensive analysis of low-back disorder risk and spinal loading during the transferring and repositioning of patients using different techniques. Ergonomics. 1999;42:904-92610424181Google ScholarCrossref 21. Department of Veterans Affairs; Department of Defense. Patient Care Ergonomics Resource Guide: Safe Patient Handling and Movement. Tampa, Fla: Patient Safety Center of Inquiry; 2001. http://www.visn8.med.va.gov/patientsafetycenter/resguide/ErgoGuidePtOne.pdf. Accessed January 1, 2007 22. US Department of Health and Human Services. Statistics on the aging population. http://www.aoa.gov/prof/Statistics/statistics.asp. Accessed December 22, 2006 23. US Census Bureau. Americans with disabilities 1997. http://www.aoa.gov/prof/Statistics/disabilities_data/65plus-97sipp-disabiliestable.pdf. Accessed December 28, 2006 24. Dejong G, Palsbo SE, Beatty PW, Jones GC, Kroll T, Neri MT. The organization and financing of health services for persons with disabilities. Milbank Q. 2002;80:261-30112101873Google ScholarCrossref 25. Schroeder S, Steinfeld E. The Estimated Cost of Accessible Buildings (Contract H-2200). Washington, DC: US Dept of Housing and Urban Development, Office of Policy Development and Research; 1979
TI - Structural Impairments That Limit Access to Health Care for Patients With Disabilities
JF - JAMA
DO - 10.1001/jama.297.10.1121
DA - 2007-03-14
UR - https://www.deepdyve.com/lp/american-medical-association/structural-impairments-that-limit-access-to-health-care-for-patients-Umwl2sDqur
SP - 1121
EP - 1125
VL - 297
IS - 10
DP - DeepDyve
ER -