Chapter 42: Disability and Patients with Disabilities PDF

Mount Saint Vincent College Access Provided by: Medical Management of Vulnerable and Underserved Patients: Principles, Practice, and Populations, 2e Chapter 42: Disability and Patients with Disabilities Lisa I. Iezzoni; Margot Kushel OBJECTIVES Objectives Define the concept of disability. Review th...

Mount Saint Vincent College Access Provided by: Medical Management of Vulnerable and Underserved Patients: Principles, Practice, and Populations, 2e Chapter 42: Disability and Patients with Disabilities Lisa I. Iezzoni; Margot Kushel OBJECTIVES Objectives Define the concept of disability. Review the epidemiology of disabilities among community­dwelling persons. Describe key social, legal, and health policy issues relating to disability. Describe issues raised by disabilities related to vision, hearing, and lower extremity mobility difficulties and strategies to improve these. Describe accessibility considerations for health­care settings. INTRODUCTION According to the 2011 World Report on Disability, approximately 1 billion people worldwide live with disability.1 The U.S. Census Bureau puts the number of Americans with disabilities at roughly 57 million or about 19% of the population.2 Both in the United States and around the globe, persons with disabilities are much more likely than others to experience significant disadvantages in education, employment, income, housing, and transportation, as well as other eco­social determinants of health.1,3 In addition, people with disabilities often experience disparities in their health care, for example, receiving fewer screening and preventive services than do persons without disabilities. People with disabilities are more likely to experience inactivity, putting them at higher risk of chronic diseases. On average, individuals with disabilities are much more likely to report fair or poor health than are nondisabled persons. Disabilities are diverse in their causes, nature, timing, pace, and personal and social implications. Some are congenital, others acquired. Some arrive suddenly with injury or accident; others progress slowly over time. Some gradually limit but do not threaten life; others hasten death. Some are visible to outsiders; others remain hidden. Some engender stigmatization and blame; others prompt pity and paternalism. Some are seen primarily as “diseases” (e.g., end­stage cancer, emphysema, schizophrenia), even when profoundly disabling. Anyone can become disabled, and in the fullness of time, most people do. Given this diversity, speaking of “persons with disabilities” as a single subpopulation is almost meaningless. Even within categories of impairments— such as lower extremity mobility difficulties—the causes, manifestations, and clinical implications are wide ranging. This chapter does not discuss specific medical conditions that cause disabilities. Instead, it offers an overview of the key social and health policy issues and selected major practice concerns raised by disability, focusing on persons with disabilities related to seeing, hearing, and walking. For convenience, this chapter uses the term “disability” when referring to sensory or physical impairments. Nonetheless, it makes no presumption that individuals with these conditions are, in fact, disabled, however they choose to define the word. People with other potentially disabling conditions, such as serious and persistent mental illness or developmental disability, might require somewhat different assessments or accommodations than those described later. DEFINING DISABILITY Downloaded 2024­2­18 9:31 A Your IP is 63.247.225.21 Judy, in her late 20s, was born to deaf parents who themselves had deaf parents. Judy is third­generation deaf. Judy’s family speaks American Sign Page 1 / 17 Chapter 42: Disability and Patients with Disabilities, Lisa I. Iezzoni; Margot Kushel Language (ASL),Hill. which also was the language usedofatUse her Deaf school. She later learned English and now works in the hearing world, relying on lip ©2024 McGraw All Rights Reserved. Terms Privacy Policy Notice Accessibility reading and ASL interpreters. Judy does not view herself as disabled, but instead as belonging to the Deaf linguistic minority culture. fact, disabled, however they choose to define the word. People with other potentially disabling conditions, such as serious and persistent mental Mount Saint Vincent College illness or developmental disability, might require somewhat different assessments or accommodations than those described later. Access Provided by: DEFINING DISABILITY Judy, in her late 20s, was born to deaf parents who themselves had deaf parents. Judy is third­generation deaf. Judy’s family speaks American Sign Language (ASL), which also was the language used at her Deaf school. She later learned English and now works in the hearing world, relying on lip reading and ASL interpreters. Judy does not view herself as disabled, but instead as belonging to the Deaf linguistic minority culture. Identifying individuals as disabled is complex, with multilayered personal, administrative, legal, and societal ramifications. Over the last century, various definitions of disability have appeared for diverse purposes, with little consensus across definitions. A “medical model” treats disability “as a problem of the person, directly caused by disease, trauma, or other health condition, which requires medical care. Management of the disability is aimed at cure or the individual’s adjustment and behavior change.”1,2 In the past 50 years, a “social model” has viewed disability “mainly as a socially created problem, and basically as a matter of the full integration of individuals into society. Disability is not an attribute of an individual, but rather a complex collection of conditions, many of which are created by the social environment.”2 Judy, for example, sees communication problems she confronts in her workplace not as her personal deficit, but as failures of the majority hearing world to accommodate communication with a linguistic minority. In 2001, the World Health Organization approved the International Classification of Functioning, Disability and Health (ICF), which attempts to integrate medical and social models of disability.2,3 The ICF identifies three interrelated concepts: “Impairments are problems in body function or structure such as a significant deviation or loss. Activity is the execution of a task or action by an individual. [and] Participation is involvement in a life situation.” The ICF defines disability as an “umbrella term for impairments, activity limitations or participation restrictions,” conceiving “a person’s functioning and disability … as a dynamic interaction between health conditions (diseases, disorders, injuries, traumas, etc.) and contextual factors,” including environmental and personal attributes.2 As discussed in the following, the Americans with Disabilities Act (ADA, P.L. 101­336) adopted an even more expansive definition of disability. Whenever she goes to the doctor, Judy says, the first question is always about why she is deaf: “I was just born that way.” She wants the first question to address her chief complaint. Today’s broad definition of disability carries important lessons for clinicians, primarily because of potential effects on patient–clinician communication and incorporating the disability appropriately into treatment plans. Clinicians should approach clinical encounters with persons with disabilities just as they do with other patients, starting with the chief complaint and then, as necessary, learning more about any impairments when asking history questions. It is useful for the clinician to learn the patient’s view of the impairment. In some instances, impairments may be irrelevant to the reason patients seek care. For example, Judy’s identification as a linguistic minority rather than as someone with a disability should be known and respected, regardless of how social programs or legal mandates would categorize her. In addition, the social definition highlights the relationships between individuals and their daily environments. Interventions that affect the interplay between them (e.g., various assistive technologies) or even the environment itself (e.g., ramps at home entrances) may prove extremely efficacious in restoring persons to safe and independent functioning; thus, the health care provider’s role in “treating” disability includes adjustments not only to the impairment, but in recommended adjustments to the environment and the interplay between them. EPIDEMIOLOGY Varying definitions impede efforts to determine the population prevalence of disability. Patterns of disability (e.g., by age, sex) vary depending on perspective. Nearly 20% of community­dwelling, civilian, US residents aged 5 years and older report at least some disabling condition, with rates rising sharply (to 50%) among persons aged 65 and older.2 As noted earlier, disability frequently tracks with personal attributes that characterize vulnerable populations, including minority race, low educational attainment, high level of unemployment, and poverty. Conditions relating to aging are the most common causes of sensory and physical disabilities. Cataracts and glaucoma, along with presbyopia, are the main causes of vision loss4; presbycusis is the most common reason for hearing loss5; and arthritis is the single most disabling condition among adult Americans.5 Overall, because rates of hearing problems among white men, white persons are more likely than African­American, Hispanic, Downloaded 2024­2­18 9:31 of A very Yourhigh IP is 63.247.225.21 Page 2 /do 17 Chapter Disability andto Patients withsensory Disabilities, Lisa I. disability. Iezzoni; Margot Kushel and other42: race individuals report any or mobility However, African Americans report higher rates of mobility disabilities than ©2024 McGraw Hill. All Rights Reserved. Terms of Use Privacy Policy Notice Accessibility whites; relative rates for Hispanics vary depending on the nature of the physical impairment. sharply (to 50%) among persons aged 65 and older.2 As noted earlier, disability frequently tracks with personal attributes that characterize vulnerable Mount Saint Vincent College populations, including minority race, low educational attainment, high level of unemployment, and poverty. Access Provided by: Conditions relating to aging are the most common causes of sensory and physical disabilities. Cataracts and glaucoma, along with presbyopia, are the main causes of vision loss4; presbycusis is the most common reason for hearing loss5; and arthritis is the single most disabling condition among adult Americans.5 Overall, because of very high rates of hearing problems among white men, white persons are more likely than African­American, Hispanic, and other race individuals to report any sensory or mobility disability. However, African Americans report higher rates of mobility disabilities than do whites; relative rates for Hispanics vary depending on the nature of the physical impairment. OVERVIEW OF SOCIAL, LEGAL, AND HEALTH POLICY ISSUES Jimmy, a man in his mid­40s, has painful arthritis in his hips and knees, which sometimes causes him to fall. He worked moving boxes in a warehouse, but the physical demands of his job seemed too much for him and his employer fired him. Out of a job, Jimmy is unable to sustain his level of living and seeks public assistance. He asks his physician to write a disability letter in support of his Social Security Disability Insurance (SSDI) application. SOCIAL SECURITY PROGRAMS In the late 1950s, Social Security began two programs authorizing cash benefits for persons, such as Jimmy, who cannot work because of disability: SSDI (under Title II of the Social Security Act) and Supplemental Security Income (SSI, under Title XVI). SSDI gives benefits to persons who are “insured” by virtue of having worked and contributed to the Social Security trust fund through withholdings on their earnings (SSDI also covers certain disabled dependents of insured persons). The 1972 Social Security Act amendments granted eligibility for Medicare to individuals who have received SSDI cash benefits for 2 years. Title XVI provides SSI payments to persons, including children, who are disabled, blind, or elderly and have passed a means test documenting limited income and resources. Persons qualifying for SSI immediately receive Medicaid coverage. Poor persons receiving SSDI also can obtain SSI benefits after passing the means test; some states supplement the federal income benefit with additional cash payments. SSDI and SSI use identical definitions to determine whether working­age adults are “disabled”: Under a yes/no standard, persons either can or cannot engage in “substantial gainful activity” because of medically proven sensory, physical, or mental impairments.6 As codified by 1968 regulations, the disability evaluation starts with the “Listings of Impairments” (the so­called List), which itemizes impairments, grouped by body system, that should be sufficiently severe to preclude substantial gainful employment among adults.7 The List stipulates specific tests (e.g., radiographs) and physical examination findings (e.g., joint range of motion) required to validate each condition. Musculoskeletal conditions are the leading cause of disability eligibility.7 PHYSICIAN ROLE IN ELIGIBILITY ASSESSMENT Typically, officials determining eligibility seek information from applicants’ own physicians, presuming that they have the greatest clinical knowledge of their patients’ conditions. Thus, when Jimmy sought benefits from Social Security, he was referred to his physician for an evaluation and completion of the appropriate paperwork. This sometimes causes tensions between patients and physicians, especially when physicians think that patients can still work and the patient disagrees. After all, physicians must document all forms honestly, based on their professional judgments. In such instances, physicians should thoroughly explore the reasons why persons wish to stop working. For example, in Jimmy’s case, his physician might believe that he is not significantly impaired and could work at another job requiring less physical labor. How disagreements between patients and physicians are handled often depends on the nature of the interpersonal and professional relationships. When there is disagreement, one strategy is to show the patient the final evaluation, asking if he or she would like the physician to submit it. Often, if the patient is unhappy, he or she may simply seek the advice of another physician. Finally, it is important to note that in the final analysis, it is not the clinician who grants disability, but it is the agency or courts (see “Core Competency”). AMERICANS WITH DISABILITIES ACT Given his financial straits, Jimmy sometimes wonders whether he should have tried to continue working, suing his company under the Americans with Disabilities Act for a job that would have been less physically demanding. Downloaded 2024­2­18 9:31 A Your IP is 63.247.225.21 According42: to Disability its opening statement, of the Americans with Disabilities Act is “to provide a clear and comprehensive national mandate for 3the Page / 17 Chapter and Patients the withaim Disabilities, Lisa I. Iezzoni; Margot Kushel ©2024 McGraw Hill. All Rights Reserved. Terms of disabilities.” Use PrivacyTitle Policy Notice Accessibility elimination of discrimination against individuals with I charges the Equal Employment Opportunity Commission, established initially with the Civil Rights Act of 1964, with ensuring that employers do not discriminate because of disability against otherwise qualified individuals “in regard to job application procedures, the hiring, advancement, or discharge of employees, employee compensation, job training, and other terms, the patient is unhappy, he or she may simply seek the advice of another physician. Finally, it is important to note that in the final analysis, it is not the Mount Saint Vincent College clinician who grants disability, but it is the agency or courts (see “Core Competency”). Access Provided by: AMERICANS WITH DISABILITIES ACT Given his financial straits, Jimmy sometimes wonders whether he should have tried to continue working, suing his company under the Americans with Disabilities Act for a job that would have been less physically demanding. According to its opening statement, the aim of the Americans with Disabilities Act is “to provide a clear and comprehensive national mandate for the elimination of discrimination against individuals with disabilities.” Title I charges the Equal Employment Opportunity Commission, established initially with the Civil Rights Act of 1964, with ensuring that employers do not discriminate because of disability against otherwise qualified individuals “in regard to job application procedures, the hiring, advancement, or discharge of employees, employee compensation, job training, and other terms, conditions, and privileges of employment” (Sec. 102(a)). Discrimination includes “not making reasonable accommodations to the known physical or mental limitations” (Sec. 102(b)(5)(A)). Title II prohibits discrimination or denial of services provided by public entities, while Title III prohibits discrimination involving public accommodations and services operated by private entities, including the “professional office of a health care provider, hospital, or other service establishment” (Sec. 301(7)(F)). The ADA defines disability as: “(A) a physical or mental impairment that substantially limits one or more of the major life activities of such individual; (B) a record of such an impairment; or (C) being regarded as having such an impairment” (Sec. 3(2)). In operationalizing this definition, the ADA differs fundamentally from other civil rights laws. For instance, to sue for racial or gender discrimination, plaintiffs do not need to prove that they belong to a particular race or gender group. However, to litigate under the ADA, individuals must prove, sometimes to a skeptical judiciary, that they are disabled before they can broach questions about discrimination. Through various cases (Sutton et al. v. United Air Lines, Inc. and Murphy v. United Parcel Service, Inc., 1999; Toyota Motor Manufacturing Inc. v. Williams, 2002), the US Supreme Court further constrained the ADA’s reach, largely by delimiting the “major life activities” clause. Rejecting Supreme Court holdings in such cases, the Congress passed the Americans with Disabilities Amendments Act (ADAAA), which was signed into law in 2008. The ADAAA aims to broaden coverage by including lists of conditions that qualify as disabilities and eliminating other strictures that limited disability claims. Under ADAAA provisions, with his physician’s assertions about his debilitating lower extremity arthritis and difficulty working, Jimmy might pass muster as “disabled” even though he still functions around home, doing light chores and preparing meals. Common Pitfalls Having a disability can have a profound effect on the health care one receives. Providers often: Fail to seek the patient’s perspective on his or her impairments. Assume that the disability is the reason the patient is seeking care. Are unfamiliar with the assistive devices that may help their patient. Are not adequately trained to assess the disability. Do not have or make appropriate use of adaptive equipment in their work setting. Struggle with applications for disability benefits. LOWER EXTREMITY MOBILITY DIFFICULTIES Tom’s wife is both irritated and worried. Tom, a shop clerk in his mid­40s, refuses to acknowledge the foot drop that is making him fall ever more frequently. He will not even tell the clinic doctor about it. Walking not only physically moves persons at will from point A to point B, but it also carries tremendous cultural significance. The US ethos assumes Downloaded 2024­2­18 9:31 A Your IP is 63.247.225.21 citizens are free to move at will, act independently, be self­reliant, and take control, not be a burden to others. Bipedal, upright movement permeates Page 4 / 17 Chapter 42: Disability and Patients with Disabilities, Lisa I. Iezzoni; Margot Kushel aphorisms, connoting independence, autonomy, perseverance, strength, “standing on your own two feet,” “walking tall,” “standing up ©2024 McGraw Hill. All Rights Reserved. Terms of Use Privacy Policyachievement: Notice Accessibility for yourself,” “taking things in stride,” and “climbing the ladder of success.” If their walking progressively fails, people can become embarrassed, ashamed, terrified of losing control, and afraid of being called lazy. Especially when older, people can feel that worsening walking is inevitable, Mounthim Saint College Tom’s wife is both irritated and worried. Tom, a shop clerk in his mid­40s, refuses to acknowledge the foot drop that is making fallVincent ever more frequently. He will not even tell the clinic doctor about it. Access Provided by: Walking not only physically moves persons at will from point A to point B, but it also carries tremendous cultural significance. The US ethos assumes citizens are free to move at will, act independently, be self­reliant, and take control, not be a burden to others. Bipedal, upright movement permeates aphorisms, connoting independence, autonomy, perseverance, strength, achievement: “standing on your own two feet,” “walking tall,” “standing up for yourself,” “taking things in stride,” and “climbing the ladder of success.” If their walking progressively fails, people can become embarrassed, ashamed, terrified of losing control, and afraid of being called lazy. Especially when older, people can feel that worsening walking is inevitable, something to be borne without complaint and hidden from view, something physicians can do little to help.8 Some, such as Tom, believe they can beat the problem by sheer willpower. In addition, Tom fears, not without reason, that he will lose his job if his boss notices his increasing debility. THE ACT OF WALKING Walking involves multiple interactive components, including gait, balance, strength, and endurance. Gait is the physical action of walking—a repeating cycle of movements encompassing one step with each foot. The gait cycle involves the stance phase (about 60% of the gait cycle) and the swing phase (the other 40%). The stance phase splits further into the double­leg stance (both feet contacting the ground) and the single­leg stance. One way to increase stability is to increase the time spent in double­leg stance. As people age, stride length shortens, thus resulting in larger proportions of walking time spent with two­leg support. During the gait cycle, a person’s center of mass (COM, located midway between the hips) moves rhythmically up and down and side to side, while transferring weight from one leg to the other. People naturally adjust their limb and trunk muscles, counterbalancing arm swings and walking speeds to minimize COM movements and maintain their balance (the ability to control upright posture). Abnormalities that distort smooth, wavelike COM movement, such as the hemiplegic gait of strokes or efforts to avoid weight bearing on painful hips or knees, increase the energy required to walk. Walking slowly actually demands more energy for muscles and other structures to provide additional balance. If persons with impairments walk slowly, they therefore consume more energy than do others while walking the same distance. TAKING A WALKING HISTORY AND EVALUATING MOBILITY Asking about physical activity should be part of a complete primary care evaluation. Patients’ abilities to walk distances or perform other physical activities have long been used as explicit clinical indicators of cardiorespiratory endurance. Carefully questioning patients with, for example, heart failure or chronic obstructive pulmonary disease about how far they can walk before becoming short of breath provides important information about the severity of those diseases. Sometimes clinicians make patients walk around the office while monitoring their oxygenation via an oximeter. However, this does not constitute a formal gait analysis. Major primary care textbooks say little about evaluating gait, and primary care clinicians often fail to recognize fully patients’ functional deficits. Some primary care clinicians observe patients as they walk into examining rooms or climb onto examining tables; however, these efforts are neither rigorous nor consistent. Only a few ask their patients to walk down the corridor and formally evaluate their gait. Evaluation tools do exist to assess walking, requiring nothing more sophisticated than a hallway, chair, and stopwatch. One that has been validated for elderly populations is the “Get Up and Go Test.”9 At a minimum, assessments provide a critical baseline evaluation (Box 42­1). Box 42­1. The “Get Up and Go” Test Instruct patient to: Rise from sitting position Walk 10 feet Turn around Return to seated position in chair Taking more than 30 seconds to complete this task suggests higher rates of dependence and risk of falls; less than 20 seconds suggests independence for transfers and mobility. Source: From Podsiadlo and Richardson.1 0 Downloaded 2024­2­18 9:31 A Your IP is 63.247.225.21 Page 5 / 17 Chapter 42: Disability and Patients with Disabilities, Lisa I. Iezzoni; Margot Kushel ©2024 McGraw Hill. All Rights Reserved. Terms of Use Privacy Policy Notice Accessibility Getting patients such as Tom to describe their difficulty walking can take careful questioning, cautiously circling the issue. Clinicians could begin with a series of questions: Do you ever have trouble walking across the street before the light changes? Tell me about the last time you walked around your primary care clinicians observe patients as they walk into examining rooms or climb onto examining tables; however, these efforts are neither rigorous Vincent College nor consistent. Only a few ask their patients to walk down the corridor and formally evaluate their gait. Evaluation tools doMount exist toSaint assess walking, Access Provided by: requiring nothing more sophisticated than a hallway, chair, and stopwatch. One that has been validated for elderly populations is the “Get Up and Go Test.”9 At a minimum, assessments provide a critical baseline evaluation (Box 42­1). Box 42­1. The “Get Up and Go” Test Instruct patient to: Rise from sitting position Walk 10 feet Turn around Return to seated position in chair Taking more than 30 seconds to complete this task suggests higher rates of dependence and risk of falls; less than 20 seconds suggests independence for transfers and mobility. Source: From Podsiadlo and Richardson.1 0 Getting patients such as Tom to describe their difficulty walking can take careful questioning, cautiously circling the issue. Clinicians could begin with a series of questions: Do you ever have trouble walking across the street before the light changes? Tell me about the last time you walked around your neighborhood. What do you hold onto when you walk around your house? How many times a day do you walk up and down stairs? Have you fallen in the past year? How much do you worry about falling? Family members, such as Tom’s wife, can volunteer important insight, albeit sometimes at the cost of interpersonal harmony. Obviously, additional questions should target specific diagnostic possibilities (e.g., asking about pain, muscle weakness). As in Tom’s case, if patients report falls, questions should address potential precipitants and elicit information that could assist in designing strategies to prevent falls. Tip: Traffic signals at standard cross­walks are timed to normal adult gait speed. If your patient regularly has difficulty crossing the cross­walks prior to the “Don’t Walk” signal, he or she may have a gait disorder. REFERRALS TO REHABILITATION SPECIALISTS His physician plans to work up Tom’s drop foot, but in the meantime he refers Tom to a physical therapist for evaluation, potential strengthening and balance exercises, and to learn how to prevent falls or at least minimize injury when falls do occur. Primary care clinicians are not typically trained to perform detailed functional evaluations or recommend specific exercises or other clinical interventions or assess persons for assistive technologies, such as mobility aids.10 When patients have important and active medical issues affecting their function, physical medicine and rehabilitation (PM&R) physicians (also known as physiatrists) can help. They assess functional needs and provide nonsurgical interventions, frequently working alongside physical and occupational therapists. By fully understanding complex medical factors, as well as the nature of impairments, PM&R specialists aim to construct care plans that maximize health and independent functioning. Table 42­1 shows guidelines of appropriate referral to physical or occupational therapists. Table 42­1. Guidelines for Appropriate Referrals to Rehabilitation Specialists Referrals to physical therapists are appropriate when patients: Are adapting to new disability Have significant balance or gait disturbance Have significant range of motion or strength impairments Need assessment for a mobility aid Need training in use of ambulatory aid Downloaded 2024­2­18 9:31 A Your IP is 63.247.225.21 seating and or positioning with a wheelchair Chapter 42:Have Disability Patients problems with Disabilities, Lisa I. Iezzoni; Margot Kushel ©2024 McGraw Hill. All Rights Reserved. Terms of Use Privacy Policy Notice Accessibility Referrals to occupational therapists are indicated when patients: Are adapting to new disability Page 6 / 17 their function, physical medicine and rehabilitation (PM&R) physicians (also known as physiatrists) can help. They assess functional needs and provide Mount Saint Vincent College nonsurgical interventions, frequently working alongside physical and occupational therapists. By fully understanding complex medical factors, as well Access Provided by: as the nature of impairments, PM&R specialists aim to construct care plans that maximize health and independent functioning. Table 42­1 shows guidelines of appropriate referral to physical or occupational therapists. Table 42­1. Guidelines for Appropriate Referrals to Rehabilitation Specialists Referrals to physical therapists are appropriate when patients: Are adapting to new disability Have significant balance or gait disturbance Have significant range of motion or strength impairments Need assessment for a mobility aid Need training in use of ambulatory aid Have seating or positioning problems with a wheelchair Referrals to occupational therapists are indicated when patients: Are adapting to new disability Need assistance with basic or instrumental activities of daily living Display limited judgment about safety Need splint or orthotic fabrication Need adaptive equipment for work Require assessment of home environment for possible modification to improve safety and usability AMBULATION AIDS AND WHEELED MOBILITY AIDS Tom’s physician recommends a cane to assist with balance and help prevent falls. Mobility aids fall into two broad classes, depending on whether they assist or replace ambulation. These aids can restore functional independence to persons unable to walk safely without them. The proper choice depends on the cause of the mobility difficulty, the setting in which the person will use the aid, and the person’s physical condition (e.g., endurance, upper and lower body strength, hand strength and dexterity, balance, truncal stability), cognition, judgment, vision, and hearing. Some people may benefit from having more than one type of aid for use in different circumstances. Ambulation aids include canes, crutches, knee walkers, and walkers (with and without wheels), whereas wheeled mobility aids include manual and power wheelchairs and scooters. To use ambulation aids, persons must have adequate shoulder, arm, and hand functioning. Historically, mobility aids had distinctly institutional appearances, underscoring images of debility. Now, diverse manufacturers compete to provide mobility aids meeting all consumer demands and needs, including children’s crutches in fluorescent colors, canes decorated with elaborate carvings or paintings, rolling walkers with seats and baskets, lightweight manual wheelchairs in rainbow hues, and specialized wheelchairs for sports from racing to basketball. Language is also shifting. The phrases “wheelchair bound” and “confined to a wheelchair” imply passivity and are simply wrong (i.e., no one spends every minute in a wheelchair). Today’s preferred phrase—”wheelchair user”—is simple and accurate, reflecting action. CANES Canes can aid balance and offload weight. Although multiple styles of canes exist (standard, offset, and multilegged), little research has explored the optimal cane for different situations, and often the choice comes down to personal preference and availability. All canes offer an additional point of contact with the ground and thus widen persons’ base of support. Offset canes bear weight better than standard canes, but multilegged canes may be best for that purpose. Regardless of the style, canes must be the proper height and used correctly to maximize their utility. For increasing balance, patients should place the cane in their dominant hand; the extrasensory input from the hand­cane­ground contacts helps improve balance. For offloading weight, persons hold the cane in the hand opposite the weak or painful leg (e.g., persons with right knee problems should use the left hand). When taking a step, persons should advance their cane along with their problem leg, allowing some weight to shift from that leg to their arm and the cane. Downloaded 2024­2­18 9:31 A Your IP is 63.247.225.21 Chapter 42: Disability and Patients with Disabilities, Lisa I. Iezzoni; Margot Kushel CRUTCHES ©2024 McGraw Hill. All Rights Reserved. Terms of Use Privacy Policy Notice Accessibility Page 7 / 17 Unlike canes, crutches can bear a person’s full weight, assuming the individual has sufficient upper body strength. Crutches also increase the lateral contact with the ground and thus widen persons’ base of support. Offset canes bear weight better than standard canes, but multilegged canes may be Saint Vincent College best for that purpose. Regardless of the style, canes must be the proper height and used correctly to maximize their utility.Mount For increasing balance, Provided by: patients should place the cane in their dominant hand; the extrasensory input from the hand­cane­ground contacts helps Access improve balance. For offloading weight, persons hold the cane in the hand opposite the weak or painful leg (e.g., persons with right knee problems should use the left hand). When taking a step, persons should advance their cane along with their problem leg, allowing some weight to shift from that leg to their arm and the cane. CRUTCHES Unlike canes, crutches can bear a person’s full weight, assuming the individual has sufficient upper body strength. Crutches also increase the lateral base of support and thus improve stability. The two classes of crutches are axillary and forearm models. Because they require considerable upper body strength, axillary crutches are most appropriate for temporary complete weight bearing following an injury. Forearm crutches, also called Canadian crutches, require triceps strength but allow the hands to be free when not walking. Persons with partial paralysis or lower extremity amputations can use forearm crutches to offload weight. KNEE WALKERS Knee walkers can be used by individuals with foot and ankle impairments. As they do not require upper extremity strength, they can be useful for individuals who have difficulty using crutches. Like wheeled walkers, they require significant attention from their users. Unlike crutches, knee walkers cannot be used on stairs. WALKERS Numerous models of walkers now exist: standard four­point walkers without wheels; walkers with wheels in front but not in the back; and walkers with three or four wheels, brakes on their handlebars, seats, and baskets. Depending on their style, walkers greatly increase stability and balance. Wheeled walkers minimize the energy demands of their use, but require greater attention and care from users. As with canes and crutches, walkers must be set to an appropriate height for the individual user, and optimally physical therapists would train persons in proper use of their walker. Tom’s leg weakness worsens, preventing him from walking long distances. His wife has an old, institutional wheelchair hidden away, left behind from her mother’s final illness. Would that help Tom? WHEELCHAIRS Most assume that when people are seated they are safe and comfortable. Nothing is further from the truth. Standard chrome wheelchairs, with plastic sling backs and seats used to ferry people around hospitals and airports, generally are uncomfortable to occupy for lengthy periods. “Seating” is now a science. Engineers and materials specialists design wheelchairs and wheelchair cushions specifically to maximize safety, comfort, and functionality, with adequate back supports, padding for vulnerable sites (e.g., ischial tuberosities) to minimize risks of pressure ulcers, and maximal maneuverability and stability. For people with money or generous insurance coverage, countless options exist. However, inexpensive and suboptimal models are all some people can afford. Many, such as Tom, end up using equipment left behind by others and likely inadequate to their needs. Numerous types of wheeled mobility aids are now available. Different models generally fall into one of four categories: manual wheelchairs, in which the user is either pushed from behind or provides all the propulsive power, made from standard or ultra­lightweight materials; new power assist wheelchairs, which are basically manual models with a switch that temporarily turns on power, boosting the propulsion of the wheels as the user pushes; four­wheel power (battery­powered) wheelchairs, with a wide range of different controls (e.g., a joystick on the armrest, controls operated by the user’s mouth, chin, head, or breaths) and features (e.g., tilt­in­space, recline, and power leg elevation in complex rehab wheelchairs); and three­ or four­wheeled scooters, in which users sit in a captain’s chair, affixed to a platform and positioned behind the controls. Although manual wheelchairs seem optimal for maximizing the physical fitness of persons who can use them, long­term self­propulsion can cause rotator cuff injuries, carpal tunnel syndrome, and shoulder pain. Careful evaluation by specialists, preferably in a seating clinic, is essential to ensure choice of equipment that maximizes independent function and minimizes physical risks. Tom does not have the upper body strength to self­propel a wheelchair for any distance and seeks coverage for a power wheelchair from Medicare. DEALING WITH MEDICARE AND OTHER INSURERS Downloaded 2024­2­18 9:31 A Your IP is 63.247.225.21 Page 8 / 17 Chapter 42: Disability and Patients with Disabilities, Lisa I. Iezzoni; Margot Kushel Medicare and other typically will notTerms pay forofitems services unless they are deemed “medically necessary” (Box 42­2). Insurers often reduce ©2024 McGraw Hill.insurers All Rights Reserved. Use orPrivacy Policy Notice Accessibility the arguments to a simple question: Is the item or service medically necessary to treat a disease, disorder, or injury or is it primarily desired for convenience? This question poses a vexing problem for mobility aids, which by definition are not “treating” a condition but are explicitly recognizing Mount Saint Vincent College Provided by: Tom does not have the upper body strength to self­propel a wheelchair for any distance and seeks coverage for a power Access wheelchair from Medicare. DEALING WITH MEDICARE AND OTHER INSURERS Medicare and other insurers typically will not pay for items or services unless they are deemed “medically necessary” (Box 42­2). Insurers often reduce the arguments to a simple question: Is the item or service medically necessary to treat a disease, disorder, or injury or is it primarily desired for convenience? This question poses a vexing problem for mobility aids, which by definition are not “treating” a condition but are explicitly recognizing that a permanent deficit might exist. Medicare adds to their evaluation the “in­home” rule: Items are covered only if persons must use them in their home. In Tom’s case, he “furniture surfs” at home and uses the wheelchair only outdoors to travel longer distances; therefore, Medicare would view a power chair as a “convenience item” and deny Tom’s request. Note that Medicare pays only for equipment that is needed within the patient’s house. Medicare documentation requirements change periodically. Therefore, clinicians should be aware of current requirements when making a request for Medicare coverage of mobility aids. Tom initially refused to use a cane, worried about how people would see him. Later Tom said, “I won’t be seen dead in a wheelchair.” Now Tom finds the wheelchair improves his independence. Box 42­2. Tips on Documentation for Insurance Letters Be specific and include all relevant information: 1. Diagnoses that lead to impairment. 2. Documentation of physical limitations, including impact on daily functioning. 3. Specific description of equipment and how it is used: what activities were limited; when and where will equipment be used. 4. Clear rationale justifying benefits A lingering sense of social stigma and other complex emotions often make people reluctant to use mobility aids. Primary care physicians may wish to work closely with rehabilitation specialists to find the optimal options for individual patients. When patients like Tom hesitate to use equipment that could potentially improve their safety, physicians should avoid “all­or­nothing” recommendations. Many patients successfully and appropriately use mobility aids intermittently. For example, Tom successfully “furniture surfs” at home but would benefit from using his cane outdoors or when in large crowds. Physicians should take care to avoid “all­or­nothing” declarations, making it clear that patients may use equipment in different ways at different times. In addition, physicians should help reframe issues for patients, emphasizing the ways in which aids will increase mobility for patients, rather than serving as an indicator of debility. BLINDNESS AND LOW VISION Lorna, in her late 40s, has many medical problems, especially diabetes, which has limited her vision. About 1.3 million Americans, roughly 5 in 1000 persons, are legally blind (central visual acuity of [20/200 in the better eye with correction or a field of vision of 20 degrees]), although about 80% of them have some useful vision.11 Blindness does not mean total loss of vision; many blind people can still see shadows, light, colors, or images, albeit sometimes within extremely narrowed visual fields. Many others have low vision not fully corrected by eyeglasses. Vision problems can compromise mobility and activities of daily living, heighten risks of falls, and contribute to depressed mood. However, new technologies and consumer products, such as computer screen readers, books on tape, and “talking” appliances, have dramatically expanded options and quality of life for many persons with impaired vision. When glasses, medications, or surgery cannot restore vision, focusing on making the most of the remaining vision to maintain independence is crucial. Downloaded 2024­2­18 9:31 A Your IP is 63.247.225.21 Chapter 42: Disability and Patients with Disabilities, Lisa I. Iezzoni; Margot Kushel ©2024 All Rights Use cane Privacy Policy Notice Accessibility Lorna McGraw comes toHill. the clinic for a Reserved. routine visit,Terms using aofwhite to assist independent ambulation. Page 9 / 17 see shadows, light, colors, or images, albeit sometimes within extremely narrowed visual fields. Many others have low vision not fully corrected by Saintmood. Vincent College eyeglasses. Vision problems can compromise mobility and activities of daily living, heighten risks of falls, and contribute toMount depressed However, Access Provided by: expanded new technologies and consumer products, such as computer screen readers, books on tape, and “talking” appliances, have dramatically options and quality of life for many persons with impaired vision. When glasses, medications, or surgery cannot restore vision, focusing on making the most of the remaining vision to maintain independence is crucial. Lorna comes to the clinic for a routine visit, using a white cane to assist independent ambulation. Office staff and clinicians should be trained about communicating appropriately with persons who are blind or have low vision. Introducing oneself and asking what kind of assistance persons might want are the first steps. At the front desk, persons may need assistance completing routine paperwork. Finding a private place to give this assistance is essential to protect patients’ privacy. Offering to assist persons in getting around facilities is appropriate, but let the person make the first move. Persons who are blind typically use several strategies to navigate spaces: lightly holding the arm, just above the elbow, of a sighted guide, or proceeding independently with a white cane or guide dog and following a sighted guide who walks a few steps ahead. The ADA requires public and private facilities to allow service animals, such as guide dogs, on the premises even if pets are excluded. Facilities should have Braille and raised print signage marking doors and passageways so that persons can get around independently, should they choose. Blindness or low vision may not be the person’s chief complaint. Physicians should therefore not automatically assume that vision should be the first topic discussed. For patients such as Lorna, who has diabetes, physicians obviously should routinely question them about their vision and refer them to appropriate specialists. Limited evidence supports the value of routine questioning about visual functioning during primary care visits for all patients. However, depending on the clinical context, questions about sight may identify important problems. Useful questions include asking persons whether (with their glasses) they have trouble driving at night, seeing someone across the street, reading a newspaper, seeing details on the television screen, or going up stairs. Lorna lives alone. She would like a glucose monitor that would allow her to test her blood sugars at home. However, she reports trouble distinguishing her many different pill bottles. Lorna’s independence should not come as a surprise. Persons who become blind or develop low vision can continue living productive and independent lives. Rehabilitation programs specifically targeting vision loss can train persons in independent ambulation (e.g., using a white cane), in Braille (a system using raised dots to represent letters, numbers, punctuation, and certain words), and various assistive technologies to assist reading, writing, and other activities. As persons begin losing vision, large print materials (i.e., 14­point font or larger) can allow them to read printed materials, such as prescription labels on pill bottles or medication instructions. With more impaired vision, other devices (e.g., CCTV video magnifiers) may help, and new technologies may provide further assistance in the future. Health insurance usually will not pay for assistive devices for enhancing vision, although some Medicaid programs might pay for prescription eyeglasses. However, Medicare and other insurers now typically pay for selected health­ related items such as home glucose monitors that “talk” (i.e., convey information orally). Web sites such as those sponsored by the American Foundation for the Blind (www.afb.org) and National Federation of the Blind (www.nfb.org) offer extensive listings of various products and services to assist persons with visual disabilities. Some large health plans offer telephone information hotlines that provide recorded messages containing general information about health problems or conditions. Web sites designed to be accessible to all users, such as those of agencies within the US Department of Health and Human Services, offer growing volumes of accessible health information. Unfortunately, clinicians rarely provide information in accessible formats, such as prescription drug or postdischarge instructions, test results, or appointment slips. At home, patients can sometimes use technologies to access this information, for example, by magnifying print many­fold using video magnifiers or closed circuit television systems. However, depending on individual preferences, giving patients information in large print, Braille, audiotape, or disability accessible digital formats (e.g., sending appointment reminders, test results, and other information through secure Internet portals) could readily improve the accessibility of information. If high­tech formats are unavailable, clinicians should discuss with patients who are blind or have low vision alternative ways of conveying critical information even by such low­tech means as telephone calls (e.g., to make sure patients understand medication instructions and provide visit reminders, see Box 42­3). Box 42­3. Tips for Helping Patients Who Are Blind or Have Low Vision Manage Their Medications Record all pertinent information about their medications in a form useful for them: Braille, large print, audiocassette. Downloaded 2024­2­18 9:31 A Your IP is 63.247.225.21 Chapter Disabilityto and Patients with Disabilities, Lisashape I. Iezzoni; Margot Kushel Ask42: pharmacist dispense medications of similar in different sized bottles to help differentiate and keep this consistent. ©2024 McGraw Hill. All Rights Reserved. Terms of Use Privacy Policy Notice Accessibility Page 10 / 17 Wrap rubber bands or other tactile clues around the bottle corresponding to the number of times a day they are to take that medication. Remove one band with each dose. At the end of the day, replace all bands for the next day. audiotape, or disability accessible digital formats (e.g., sending appointment reminders, test results, and other information through secure Internet Mount Saint Vincent College portals) could readily improve the accessibility of information. If high­tech formats are unavailable, clinicians should discuss with patients who are Access Provided by: blind or have low vision alternative ways of conveying critical information even by such low­tech means as telephone calls (e.g., to make sure patients understand medication instructions and provide visit reminders, see Box 42­3). Box 42­3. Tips for Helping Patients Who Are Blind or Have Low Vision Manage Their Medications Record all pertinent information about their medications in a form useful for them: Braille, large print, audiocassette. Ask pharmacist to dispense medications of similar shape in different sized bottles to help differentiate and keep this consistent. Wrap rubber bands or other tactile clues around the bottle corresponding to the number of times a day they are to take that medication. Remove one band with each dose. At the end of the day, replace all bands for the next day. Other adaptive devices are critically helpful, albeit sometimes expensive. Synthetic speech systems (a synthesizer that does the speaking and a screen reader that tells the synthesizer what to say) allow persons with visual disabilities to “hear” texts that appear on computer screens. Text­to­speech software contains all the phonemes and grammatic rules of the designated language, producing fairly natural pronunciations. Keyboard commands instruct these systems to perform various functions, such as reading specific portions of texts, identifying the cursor location, and finding strings of text. Optical character recognition technologies scan printed texts then speak the words using synthetic speech or save it on a computer. Technology that conveys graphic or pictorial information into accessible formats for persons with impaired vision remains limited. Nonetheless, current optical character recognition programs contain logic to identify and correct errors, such as major grammatic or spelling mistakes, before speaking the texts. For persons with low vision who can see enlarged images, screen magnification programs offer access without speech, although users can focus only on one part of the screen at a time. New technologies are being developed that address some of these concerns, but challenges remain to improving access to online or printed materials for persons with impaired vision.4 DEAF AND HARD OF HEARING Jerry, an auto mechanic in his early 50s and father of four, is growing increasingly hard of hearing. His children are frustrated that he will not admit and “deal with” his hearing loss. Roughly, 9% of Americans have hearing loss, 10% of them with profound deficits. Age­related hearing loss (presbycusis) is the most common cause. At birth, 1 in 1000 children have severe to profound hearing loss, with four to five children having hearing deficits that impair verbal communication. Persons who are deafened prelingually (before the onset of speech, usually at the age of 3 years) typically have different communication patterns and preferences than postlingually deafened individuals, such as Jerry. In the former group, those who attend Deaf schools and interact with others through sign language often develop a strong cultural identity. In contrast, persons such as Jerry can feel that “going deaf” is embarrassing or an inevitable sign of aging and refuse to admit progressive impairments. Often, they feel isolated and lonely. Tip on language: Persons who are “deaf” or “hard of hearing” generally prefer these terms to other labels. Many view such phrases as “hearing impaired” as well intentioned but inappropriate, because they imply that hearing loss requires cure. Phrases such as “deaf and dumb” or “deaf and mute” are offensive. When spelled with a capital D, Deaf represents a cultural or linguistic view of deafness, an understanding of deafness not as an impairment but rather as a cultural identity. ASSISTIVE DEVICES Jerry’s children convince him to get a hearing aid, although his health insurance does not cover it. However, he rarely wears the hearing aid because he feels it does not work. Depending on the nature of the hearing impairment, some persons may find individual mechanical interventions useful. Downloaded 2024­2­18 9:31 A Your IP is 63.247.225.21 Hearing Aids Page 11 / 17 Chapter 42: Disability and Patients with Disabilities, Lisa I. Iezzoni; Margot Kushel ©2024 McGraw Hill. All Rights Reserved. Terms of Use Privacy Policy Notice Accessibility Hearing aids aim to amplify sounds, with different settings to target sounds within particular wavelengths, depending on the person’s needs and physical setting (e.g., quiet rooms for private conversations, settings with significant background noise). Hearing aids range widely in their prices, Jerry’s children convince him to get a hearing aid, although his health insurance does not cover it. However, he rarely wears the hearing aid because Mount Saint Vincent College he feels it does not work. Access Provided by: Depending on the nature of the hearing impairment, some persons may find individual mechanical interventions useful. Hearing Aids Hearing aids aim to amplify sounds, with different settings to target sounds within particular wavelengths, depending on the person’s needs and physical setting (e.g., quiet rooms for private conversations, settings with significant background noise). Hearing aids range widely in their prices, quality, and capabilities. Health insurance rarely covers these devices (Medicare explicitly does not cover them), so persons’ financial resources largely determine the type of device they can obtain. Persons seeking hearing aids should undergo careful assessments by audiologists skilled specifically in these devices, and they must recognize that months of trial and error may ensue before they figure out how to make the hearing aid work well for them. Not surprisingly, because of these complexities, many people use their devices only intermittently and some abandon them altogether. Assistive Listening Devices Assistive listening devices (ALDs) aim to improve the “signal­to­noise ratio,” thus allowing listeners to hear better. The process is technically equivalent to putting listeners’ ears closer to the sound source. ALDs come in different types depending on their mechanisms for enhancing sound. These technologies are widely used in public settings, such as theaters and concert halls. Personal amplified ALDs represent the most basic technology, consisting of a pocket­sized, lightweight amplifier with a microphone, either attached to the unit or connected by a wire. During conversations, users place the microphone near the speaker’s mouth and hear the amplified sounds via earphones or headphones. Having one or more ALD units available in a clinic could assist people with hearing loss and may be acceptable even to patients who generally hesitate to admit difficulty hearing. Cochlear Implants Persons with sensorineural hearing losses, regardless of when they occur, can find that cochlear implants restore much of their hearing. Hair cells of the cochlea, positioned in the inner ears, normally transmit sounds to the brain. With a cochlear implant, sounds picked up by an external microphone are transmitted to electrodes that stimulate remaining nerve cells in the cochlea, which are then recognized by the brain as sounds. Experiences with cochlear implants are highly variable and the technology is very controversial, especially among Deaf parents who wish their deaf children to be raised entirely in the Deaf culture they themselves inhabit. Telecommunications Technologies Many devices are available to assist persons with hearing impairments, such as those displayed in Web sites sponsored by the Gallaudet University Technology Access Program (tap.gallaudet.edu) and Self Help for Hard of Hearing People (www.shhh.org). Examples of useful devices include vibrator beepers or watches, flashing lights to indicate ringing telephones or emergency alarms, amplified headsets for telephones, baby monitors that vibrate the parent’s bed, closed captioning decoders on television sets, and telecommunications equipment and services. Communications technologies are advancing rapidly, perhaps in the future supplanting older modalities. Teletypewriter The teletypewriter (TTY), also called a telecommunications device for the Deaf, is a keyboard with an alphanumeric displays that, when linked through a telephone outlet or appropriately configured computer, can communicate directly with another TTY. TTY users then type their messages back and forth, often using shorthand phrases. ADA regulations require installation of TTYs in specified settings within health­care facilities. TTYs come in portable, lightweight models that some persons carry with them and simply plug into available telephone outlets. However, the widespread availability of smart phones and use of text messaging and other instant communication modalities is quickly making the TTY somewhat obsolete. The price of smart phones and monthly fees can pose a barrier to their use. Telephone Relay Services Anyone with a telephone or TTY can use telephone relay services (TRS), which by law are available free at all times under Title IV of the ADA. Dialing 7­1­ 1 nationwide connects directly to the local TRS, which uses operators called “communications assistants,” to facilitate telephone calls for people who have difficulty hearing or speaking. A TTY user types a message that the communications assistant then reads aloud to a hearing person who answers the telephone. The hearing person speaks a return message to the communications assistant, who types this response to the TTY user. Some regions offer video relay services, in which a Deaf caller signs to the communications assistant with the use of video equipment (e.g., computer cameras with broadband connections); the communications assistant voices what is signed to the called hearing person; and then signs back the spoken response to the Deaf caller. Downloaded 2024­2­18 9:31 A Your IP is 63.247.225.21 Chapter 42: Disability and Patients with Disabilities, Lisa I. Iezzoni; Margot Kushel COMMUNICATION ©2024 McGraw Hill. All APPROACHES Rights Reserved. Terms of Use Privacy Policy Notice Accessibility Page 12 / 17 People like Jerry, who lose their hearing later in life, typically have speaking skills comparable to persons who are not hard of hearing. However, the 1 nationwide connects directly to the local TRS, which uses operators called “communications assistants,” to facilitate telephone calls for people who Mount person Saint Vincent College have difficulty hearing or speaking. A TTY user types a message that the communications assistant then reads aloud to a hearing who answers Provided by:Some regions the telephone. The hearing person speaks a return message to the communications assistant, who types this response to Access the TTY user. offer video relay services, in which a Deaf caller signs to the communications assistant with the use of video equipment (e.g., computer cameras with broadband connections); the communications assistant voices what is signed to the called hearing person; and then signs back the spoken response to the Deaf caller. COMMUNICATION APPROACHES People like Jerry, who lose their hearing later in life, typically have speaking skills comparable to persons who are not hard of hearing. However, the communication skills of prelingually or early deafened individuals depend very much on their early education. Methods for teaching deaf children have generated considerable controversy for well over a century, with some educators advocating completely “oral” approaches (i.e., forcing children to learn speech and lip reading, precluding use of visual or sign languages). Today, although deaf children might start with sign language training, many go on to “total communication” or “bilingual­bicultural” training, learning both sign languages (which do not have written forms) and spoken and written languages, such as English. American Sign Language ASL, used by approximately 500,000 Americans, is a unique language grammatically and linguistically distinct from English; it is not simply English translated into hand signals. Instead, ASL uses hand signals, facial expressions, and body movements to convey concepts as effectively as spoken languages. When persons who started life using ASL later learn a spoken and written language, typically English, their English knowledge is frequently comparable to that of others for whom English is their second language. In other words, they may have limited vocabulary, perhaps making note writing with their clinicians an ineffective strategy for communication. Importantly, sign languages vary from country to country. British sign language, for instance, differs fundamentally from ASL. Lip (Speech) Reading Many deaf and hard of hearing individuals rely, at least in part, on lip or speech reading. Someone such as Jerry, who lived his life speaking English, typically finds lip reading easier than someone whose first language is ASL. Lip reading is inevitably imperfect. Only about 30% of English words are clearly readable on the lips, because many English words form at the back of the throat. Therefore, people who rely on lip reading may not necessarily know when they misunderstand or misinterpret spoken words. Primary care clinicians receive little training about the diversity of experiences faced by persons who are deaf or hard of hearing and strategies to overcome communication barriers (see Box 42­4). The limited training generally focuses on pathology of hearing loss. Therefore, clinicians can carry erroneous assumptions about methods for communicating effectively with persons with hearing disabilities. For instance, they may believe that note writing and lip reading provide effective communication, but in many instances, they do not (see Box 42­5). Box 42­4. Important Questions When Taking a Hearing History. Age at onset (prelingually versus postlingually) Preferred language, communication modality (e.g., sign language, lip reading, English using assistive device) Cultural identification Educational history, including level of understanding of spoken and written English Box 42­5. Accommodations to Ensure Effective Communication Facing the person while speaking Keeping the mouth visible Speaking naturally but clearly, without shouting or rushing Ensuring adequate lighting, especially of the face Eliminating background Downloaded 2024­2­18 9:31 Anoise Your IP is 63.247.225.21 Chapter 42: Disability and Patients with Disabilities, Lisa I. Iezzoni; Margot Kushel clinicians must wear surgical masks, choosing or transparent fog­free masks could assist lip readers ©2024When McGraw Hill. All Rights Reserved. Terms of Use clear Privacy Policy Notice Accessibility Page 13 / 17 Cultural identification Educational history, including level of understanding of spoken and written English Mount Saint Vincent College Access Provided by: Box 42­5. Accommodations to Ensure Effective Communication Facing the person while speaking Keeping the mouth visible Speaking naturally but clearly, without shouting or rushing Ensuring adequate lighting, especially of the face Eliminating background noise When clinicians must wear surgical masks, choosing clear or transparent fog­free masks could assist lip readers COMMUNICATION ACCOMMODATIONS Judy’s doctor did not have an ASL interpreter during her first Pap test, so she did not understand the procedure. She felt so traumatized that she refuses to have another Pap test. The ADA requires accommodations to ensure effective communication, unless doing so would cause significant difficulty or expense. The law stipulates that patients’ preferences for communication accommodations should receive primary consideration. However, the clinicians have the final authority to determine what constitutes effective communication. However, many people need additional communication accommodations, such as a sign language interpreter. The ADA does not require health insurers to cover sign language interpreter costs, and it prohibits providers from charging patients for this expense. Sometimes, sign language interpreter fees can exceed health insurance reimbursement for the visit, posing a financial disincentive for clinicians to hire interpreters. Nevertheless, legal experts caution physicians against using ineffective communication strategies. Courts have held physicians legally liable for failing to accommodate communication needs, especially when medical injury ensues. NEED FOR ACCESSIBLE EQUIPMENT Angela had a high thoracic spinal cord injury in her teens. Now in her late 20s, she is married and thinking of having a child. Since her injury, Angela has not been weighed, and she has not had a complete physical examination, including a Pap smear, by her primary care physician. Her physician’s office has neither a wheelchair accessible scale nor an examining table that lowers automatically to wheelchair height for easy transfer. No one feels comfortable lifting Angela out of her wheelchair onto the fixed­height examining table, designed for the convenience of a standing clinician. Once she becomes pregnant, following her weight and conducting comprehensive physical examinations will become even more important. Regulations relating to the ADA Titles II and III stipulate certain requirements for accessibility to public and private structures, but they say nothing about equipment or furnishings. The law requires that persons with disabilities receive equal services as those without disabilities, but does not specify exactly how to achieve that goal. Access problems in health­care settings are readily apparent. For instance, when Judy, who is deaf, goes in for radiologic procedures, she will not hear spoken instructions from the radiologist or technician, who is often positioned behind opaque radiation shields. Lorna, who is blind, will not be able to see the instructional video in the mammography center waiting room. Tom, with his foot drop and propensity to fall, may find lengthy hospital corridors hazardous without railings along the walls. Angela even has trouble getting into her physician’s office, because the heavy plate glass door has no automatic opener. Downloaded 2024­2­18 9:31 ADisability Your IP Rights is 63.247.225.21 The U.S. Department of Justice Section and the U.S. Department of Health and Human Services Office of Civil Right have provided Page 14 / 17 Chapter 42: Disability and Patients with Disabilities, Lisa I. Iezzoni; Margot Kushel technical assistance for ensuring accessibility of health­care to individuals with mobility disabilities.5 The U.S. Access ©2024 McGraw Hill.recommendations All Rights Reserved. Terms ofthe Use Privacy Policy Noticefacilities Accessibility Board has promulgated standards for ensuring that the built environment and fixed structures are physically accessible; these standards also govern health­care facilities, including hospitals and private clinical offices. However, no laws or regulations had stipulated accessibility standards for medical Access problems in health­care settings are readily apparent. For instance, when Judy, who is deaf, goes in for radiologic procedures, she will not hear Mount Saintwill Vincent spoken instructions from the radiologist or technician, who is often positioned behind opaque radiation shields. Lorna, who is blind, not beCollege able Access Provided by: to see the instructional video in the mammography center waiting room. Tom, with his foot drop and propensity to fall, may find lengthy hospital corridors hazardous without railings along the walls. Angela even has trouble getting into her physician’s office, because the heavy plate glass door has no automatic opener. The U.S. Department of Justice Disability Rights Section and the U.S. Department of Health and Human Services Office of Civil Right have provided technical assistance recommendations for ensuring the accessibility of health­care facilities to individuals with mobility disabilities.5 The U.S. Access Board has promulgated standards for ensuring that the built environment and fixed structures are physically accessible; these standards also govern health­care facilities, including hospitals and private clinical offices. However, no laws or regulations had stipulated accessibility standards for medical diagnostic equipment, including examination tables, weight scales, and imaging equipment. To address this need, Section 4203 of the 2010 Patient Protection and Affordable Care Act (PL 111­148) amends Title V of the Rehabilitation Act to require the U.S. Access Board, in consultation with the Food and Drug Administration, to issue technical standards for accessibility of medical diagnostic equipment for adults with disabilities. The statute explicitly aims for standards that will allow adults with disabilities to use equipment as independently as possible. The law explicitly envisions design features that permit individuals with disabilities to safely transfer onto diagnostic equipment, such as exam tables, with minimal assistance from others. The U.S. Access Board is currently considering a variety of accessibility standards that would apply to examination tables and chairs, stretchers, diagnostic imaging equipment, mammography machines, and weight scales.6 After rules on accessibility standards are promulgated, the U.S. Department of Justice will determine how widely they apply throughout the health­care delivery system. Thus, over the next decade, legal requirements may further support expanding the accessibility of health­care facilities to individuals with disabilities. KEY CONCEPTS Never make assumptions about the abilities, preferences, or expectations of persons with disabilities: Ask how you may assist them and, as much as possible, comply with their wishes. Disability marks an interaction between a person’s functional abilities and the environmental demands placed on them. Disability can be lessened by modifications in the environment. Many assistive devices and adaptive technologies exist to eliminate the gap between functional ability and environmental demands. Physical therapists, occupational therapists, and physiatrists are important resources for both providers and patients. Clinicians should make appropriate referrals. Health­care providers should seek to alter their practice environment to make it accessible to persons with disabilities by eliminating physical and communication barriers. CORE COMPETENCY The Disability Process Understand the steps: A patient initiates a claim by filing with the Social Security Office. The state­based Disability Determination Service (DDS) gathers evidence to support claims of disability. They will request records of previous clinic visits and hospitalizations. They can request medical evaluation either from the treating physician or from a physician consultant who contracts with the SSA. A board consisting of medical and nonmedical personnel at the DDS reviews the full application, including the medical documentation. Approximately 30% receive SSDI at this stage. If not approved, the applicant can appeal within 60 days. Approximately 15% of denied claims are reversed at this stage. If still denied, applicants can appeal to an administrative law judge; new information can be included and the applicant can have a lawyer. Approximately one half of denials are reversed at this stage. Concepts: Downloaded 2024­2­18 9:31 A Your IP is whether 63.247.225.21 Clinicians are not expected to decide or not the patient is disabled; rather they are to provide information regarding the impairment. Page 15 / 17 Chapter 42: Disability and Patients with Disabilities, Lisa I. Iezzoni; Margot Kushel ©2024Clinicians McGrawcan Hill.familiarize All Rights themselves Reserved. with Terms of Use Privacy Policy Notice Accessibility the “Disability Evaluation Under Social Security,” also known as the “Blue Book,” which lists the medical criteria that the SSA uses to determine impairment and disability for common causes (available online at www.ssa.gov). Mount Saint Vincent College Health­care providers should seek to alter their practice environment to make it accessible to persons with disabilities by eliminating physical Access Provided by: and communication barriers. CORE COMPETENCY The Disability Process Understand the steps: A patient initiates a claim by filing with the Social Security Office. The state­based Disability Determination Service (DDS) gathers evidence to support claims of disability. They will request records of previous clinic visits and hospitalizations. They can request medical evaluation either from the treating physician or from a physician consultant who contracts with the SSA. A board consisting of medical and nonmedical personnel at the DDS reviews the full application, including the medical documentation. Approximately 30% receive SSDI at this stage. If not approved, the applicant can appeal within 60 days. Approximately 15% of denied claims are reversed at this stage. If still denied, applicants can appeal to an administrative law judge; new information can be included and the applicant can have a lawyer. Approximately one half of denials are reversed at this stage. Concepts: Clinicians are not expected to decide whether or not the patient is disabled; rather they are to provide information regarding the impairment. Clinicians can familiarize themselves with the “Disability Evaluation Under Social Security,” also known as the “Blue Book,” which lists the medical criteria that the SSA uses to determine impairment and disability for common causes (available online at www.ssa.gov). Referral to lawyers or advocates can help patients. Writing the letter: The letter should detail the following: Duration of impairment How the impairment affects ability to work and function —Be detailed and give specific examples —Include functional, sensory, emotional, and cognitive examples: Mrs. B cannot be expected to lift more than 10 pounds or walk further than 15 feet. During his last manic episode, Mr. B drove the delivery truck to Mexico and did not return it. —Include documenting evidence: diagnostic tests, radiographs, laboratory, or functional testing —Expected duration of impairment —Likelihood of recovery DISCUSSION QUESTIONS 1. What is a disability? 2. Name three examples of assistive devices for persons with lower extremity mobility impairments, hearing loss, or low vision. 3. What steps can clinicians take to make their offices more accessible to persons with sensorimotor disabilities? 4. What is ASL? How does one use an ASL interpreter? Downloaded 2024­2­18 9:31 for A Your IP is 63.247.225.21 5. What are key components insurance documentation of a mobility aid? Chapter 42: Disability and Patients with Disabilities, Lisa I. Iezzoni; Margot Kushel ©2024 McGraw Hill. All Rights Reserved. Terms of Use Privacy Policy Notice Accessibility RESOURCES Page 16 / 17 2. Name three examples of assistive devices for persons with lower extremity mobility impairments, hearing loss, or low vision. Mount Saint Vincent College 3. What steps can clinicians take to make their offices more accessible to persons with sensorimotor disabilities? Access Provided by: 4. What is ASL? How does one use an ASL interpreter? 5. What are key components for insurance documentation of a mobility aid? RESOURCES American Foundation for the Blind. http://www.afb.org. Gallaudet University Technology Access Program. http://tap.gallaudet.edu. Self Help for Hard of Hearing People. http://www.shhh.org. National Federation of the Blind. http://www.nfb.org. 7­1­1 nationwide connects directly to the local TRS, which uses operators called “communications assistants” (CAs), to facilitate telephone calls for people who have difficulty hearing or speaking. REFERENCES 1. Pope A, Tarlov A. Disability in America: Toward a National Agenda for Prevention. Washington, DC: National Academy Press, 1991. 2. Towards a Common Language for Functioning, Disability and Health. ICF. Geneva, Switzerland: World Health Organization, 2002. 3. Ustun TB, Chatterji S, Kostansjek N, Bickenbach J. WHO’s ICF and functional status information in health records. Health Care Financ Rev 2003;24(3):77–88. [PubMed: 12894636] 4. Goldzweig CL, Rowe S, Wenger NS, MacLean CH, Shekelle PG. Preventing and managing visual disability in primary care: Clinical applications. JAMA 2004;291(12):1497–502. [PubMed: 15039417] 5. Bogardus ST Jr, Yueh B, Shekelle PG. Screening and management of adult hearing loss in primary care: Clinical applications. JAMA 2003;289(15):1986–1990. [PubMed: 12697802] 6. Disability evaluation under Social Security. Washington, DC: Social Security Administration, 2003. 7. Wunderlich GS et al. The dynamics of disability: Measuring and monitoring disability for Social Security programs. Washington, DC: National Academies Press. National Research Council Committee to Review the Social Security Administration’s Disability Decision Process Research, 2002. 8. Iezzoni LI. When walking fails: Mobility problems of adults with chronic conditions. Berkeley, CA: University of California Press, 2003. 9. Podsiadlo D, Richardson S. The timed “Up & Go”: A test of basic functional mobility for frail elderly persons. J Am Geriatr Soc 1991;39(2):142–148. [PubMed: 1991946] 10. Guidelines for the use of assistive technology: Evaluation, referral, prescription , 2nd ed. Chicago: American Medical Association, Department of Geriatric Health, 1996. 11. Kirchner C. Prevalence estimates for visual impairment: Cutting through the data jungle. J Vis Impair Blind 1999;93(4):253–259. Downloaded 2024­2­18 9:31 A Your IP is 63.247.225.21 Chapter 42: Disability and Patients with Disabilities, Lisa I. Iezzoni; Margot Kushel ©2024 McGraw Hill. All Rights Reserved. Terms of Use Privacy Policy Notice Accessibility Page 17 / 17