The author would like to acknowledge Mary Vacala, ATC, PA-C, the coauthor of this chapter in the previous edition.
In July 2005, the U.S. Surgeon General issued a Call to Action to Improve the Health and Wellness of Persons with Disabilities. According to this Call to Action, an estimated 54 million people of all ages, races, ethnicities, socioeconomic status, and education levels in the United States (20% of the population) are living with at least one disability. These disabilities range from spinal cord injuries causing paralysis to patients who are born with hearing loss or cognitive disabilities. More than 3 million people 15 years of age and older use a wheelchair. Another 10 million use a walking aid, such as a cane, crutches, or walker. Millions more live with hearing or visual losses that significantly impact activities of daily living (ADLs). These numbers will increase significantly over the next 10 to 15 years with the aging of the baby boom generation. Despite these overwhelming statistics and the fact that July 26, 2015, marked the 20th anniversary of the signing of the Americans with Disabilities Act (ADA), the literature shows that significant disparities continue to exist when comparing the health of people with disabilities with that of the general population. Access to acute and preventive health care services is lacking for these patients. Consequently, people with disabilities experience poorer health outcomes compared with the general population, according to the U.S. federal government’s initiative Healthy People 2020. Some of the barriers that prevent people with disabilities from receiving appropriate health care include physical barriers, inadequate communication, and attitudinal and social policy barriers. Adequate access to care is not only a legal obligation but also a necessity that could prevent catastrophic outcomes and prolong life. According to the Institute of Medicine’s report “The Future of Disability in America,” significant barriers still exist in hospitals and clinics that prevent patients with disabilities from accessing basic health care services. These include physical access to facilities and equipment for patients with mobility impairments and access to information and communication for patients with visual, hearing, and cognitive disabilities. The report goes on to identify early education of health care professionals as a key in eliminating some of these barriers. Clearly, we can, and must, improve our knowledge, skills, and attitudes toward the care of patients with disabilities and do more to ensure equal access.
Disability can be defined many ways. The legal definition from the ADA is as follows:
A disabled person is someone with a physical or mental impairment that substantially limits one or more major life activities (as well as someone with a history of such an impairment or someone currently regarded as such). This includes people with obvious, visible disabilities, as well as the majority of people with disabilities who have hidden conditions such as arthritis, diabetic neuropathy, or hearing loss.
Information in this chapter is designed to enable students to identify and eliminate many of the barriers faced by patients with disabilities, thereby improving health outcomes for this population. Each section addresses appropriate terms and definitions when working with patients with disabilities. This is followed by a discussion of the appropriate approach, common challenges, and methods to avoid errors in diagnosis and treatment when providing care to patients with specific disabilities, including patients who are deaf and hard of hearing, patients with mobility disabilities, patients with visual impairments (VIs), and patients with intellectual and developmental disabilities. Although evidence shows that patients with severe mental illness experience disparities in access to care, a comprehensive discussion of the primary health care needs of patients with mental illness is beyond the scope of this chapter.
Many people with disabilities are accustomed to having others evaluate and circumscribe their lives and opportunities. Stereotypic and stigmatizing views of living with disabilities erect barriers to comprehensive care, such as limiting discussions of mental health or sexuality and overemphasizing isolated symptoms and diagnoses rather than overall health.
Providing Appropriate Care for Patients Who are Deaf and Hard of Hearing
For the 28 million (1 in 10) Americans who are living with hearing loss, access to appropriate health care is limited primarily by the ability of the health care team to effectively communicate with the patient. A survey of people with varying degrees of hearing loss reveals that they often feel marginalized by their health care providers, that the “medical community holds a pathologic view of deaf people,” and too often use inadequate modes of communication, such as lip reading, writing, or asking family members to interpret.
Hearing loss can be defined in many ways. The severity of hearing loss is based on audiometric testing and measured in decibels. In general, a person with severe hearing loss is unable to hear speech when a person is talking at a normal level, and those with profound hearing loss may only hear very loud sounds. As with other types of physical disabilities, medical professionals view hearing loss as a condition that requires fixing, and people with intact hearing tend to think of deafness as a terrible loss. However, many people with hearing loss, particularly those who consider themselves part of the Deaf Community and communicate using American Sign Language (ASL), do not view themselves as ill or having suffered a tragic loss. Indeed, their deafness is as much a part of their identity as one’s cultural or ethnic heritage. Conversely, not all persons with hearing loss identify with Deaf Culture and use ASL. These patients are more likely to view their deficit as a loss and seek remediation through medical intervention. This distinction is critical in your approach to and appropriate care of patients with hearing loss.
Terms and Definitions
Prelingual deafness: Deafness occurring before the acquisition of spoken language, either congenital or before the age of 2 or 3 years
Postlingual deafness: Deafness occurring after the acquisition of spoken language
Presbycusis: Loss of hearing as part of the aging process. Estimates are as high as 80% of those older than age of 65 years of age as having a hearing loss.
Deaf Culture or Deaf Community: A culture is defined by a group of people who share similar beliefs, customs, and language. If ASL is a deaf person’s primary language, if he or she attended a school for the deaf, and if he or she seeks opportunities to socialize with other deaf people, then he or she most likely considers himself or herself part of the Deaf Culture. In this section of the text, you will see culturally deaf persons referred to as Deaf (capital “D”) and persons who have a severe or profound hearing loss but do not affiliate with the Deaf Community as deaf (lowercase “d”). This is important in terms of identifying the most appropriate method of communication and therefore ensuring accessible, quality health care for individual patients with hearing loss.
American Sign Language (ASL): A visual-gestural language used by the Deaf Community in the United States. ASL is a true language, as different from English as any other language. It has a distinct word order and grammatical structure. It is not a visual representation of English nor is it rudimentary gestures. Signed languages are not universal. As a matter of fact, British Sign Language is practically incomprehensible to Deaf people raised in the United States. There is more similarity between ASL and French Sign Language because the development of ASL was heavily influenced by a Deaf teacher, Laurent Clerc, who came to the United States from France to teach deaf children in the late 1800s.
Interpreter: Someone who is fluent in two or more languages and renders messages from one spoken or signed language into another spoken or signed language.
It is important to note the use of the term interpret in contrast with the term translate, which means to render a message from one written language to another written language and is often incorrectly used when referring to interpreting. ASL interpreters have received special training. Some may have been raised in a Deaf family where ASL was their first language. They should have national or state certification to ensure competency in the language, knowledge of the interpreting process, and adherence to a professional code of ethics. In some states, sign language interpreting is a licensed profession.
Always ask patients what their preferred mode of communication is: lip reading and speaking, writing, or using an interpreter. Do not assume that all patients with hearing loss know sign language or are expert lip readers.
When working with a patient who prefers lip reading, speak in a normal tone of voice. Do not yell, exaggerate your lip movements, or speak excessively slowly. Maintain eye contact when speaking with your patient. Do not turn away or look down when speaking. Make sure the room is well lit and, if at all possible, avoid back lighting, such as standing in front of a bright window. Remember that facial hair may interfere with accurate lip reading. Be aware that a mask will interfere with effective communication if your patient is relying on lip reading.
A 2011 study of individuals with normal hearing revealed that mean-word recognition accuracy scores were barely greater than 10% correct when exposed to a video of a female talker with the sound removed. For individuals relying on lip reading for communication, accuracy is significantly impacted, and much of the information must be gleaned from context and prior experiences. Therefore, it is important to have clear transitions from one topic to another. For example, if you are talking with a patient about his or her medication and then switch the topic suddenly to his or her upcoming surgery, most lip readers will have difficulty following the conversation at that point. To ensure accuracy, always check for understanding. If something is not clear after one or two repetitions, try rephrasing the information or present it in writing. Do not say “Never mind” or “It’s not important.” This may be perceived as dismissive or condescending by the patient.
When working with a patient who prefers written communication, you will need to allow extra time for the encounter. Your communication with the patient should be written in short, simple phrases, but do not edit or eliminate information you would provide to any other patient. Avoid abbreviations and medical jargon. Do not assume a patient has fluency in written English. For many Deaf people who use ASL, English is their second language. Feel free to use brochures and patient education materials that are preprinted and readily available. Ask the patient to read any printed materials during the visit so that you can assess understanding. For lengthy visits requiring in-depth patient education (e.g., a patient newly diagnosed with diabetes), consider using Computer Assisted Real Time captioning (CART or C-Print). This service provides a transcriptionist who has special training and computer software that allows English text to be projected onto a screen as the speaker talks. Tablets and other handheld devices can also be used to facilitate written communication.
Health care facilities (public or private) are required to provide a sign language interpreter for Deaf patients who communicate in ASL. Interpreters can be scheduled through local medical centers or deaf service organizations, and some on-call availability is typical in major metropolitan areas. Interpreter requests should be made as soon as the need becomes known because there is a shortage of qualified interpreters in most communities. Video relay services are available at some locations, allowing immediate access to interpreters any time of the day or night. Not all Deaf people are comfortable with the video relay interpreters because trust plays a critical a role in potentially sensitive situations.
If you need to communicate with your deaf or hard-of-hearing patient by phone, you first need to assess his or her preferred mode of telecommunication. Many deaf people use text messaging or other computer-based communication such as email. Some rely on a telecommunication device for the deaf (TDD or TTY). Your clinic or hospital should be equipped with a TDD, but if it is not, you can use a telephone relay service similar to the video relay mentioned earlier by dialing 711 in most areas. There is no charge for this service. Some people with hearing loss have phone amplifiers and enough residual hearing to use the telephone directly. Never convey personal medical information through household members who can use the phone unless you have written permission from the patient.
Many health care providers do not know how to access the services of an interpreter. Be proactive. Know the resources in your institution and your community so that you are able to locate qualified ASL interpreters. And be sure the office staff, those scheduling appointments or performing patient intake at your institution, are also familiar with these resources.
Patients do not always get sick on our schedule, and they may not be able to tell you their preferred mode of communication; therefore, it is critical to have an on-call list of interpreters for urgent or emergent visits. A sign language interpreter should have the skills to identify communication styles and recognize the communication needs of patients who are unable to do so. As always, if patients are able to communicate, ask first about their preferences before relying on a companion, family member, or interprete to determine the best approach to communication.
Methods to Ensure Access
If 80% of our diagnoses come from the history, then how important is clear and accurate communication with the patient in our ability to provide appropriate care? Working effectively with interpreters is key to providing good care to patients who do not or cannot use spoken English as a primary means of communication. An interpreter should be someone who has fluency in both languages (the language of the patient and that of the health care worker) and training in the role and ethics of interpreting. Guidance from the federal Department of Health and Human Services (DHHS) Office of Civil Rights makes it clear that a family member or friend should not be relied on to provide objective interpretation. And unless you are certain of a staff person’s fluency and skill in functioning in the interpreter role, it is not advisable to use a staff member who happens to “know some signs” or “took some Spanish classes.” Numerous examples (and lawsuits) exist regarding negative health outcomes as a result of using these well-intentioned but unqualified individuals to transmit medical information.
Interpreters have a distinct and limited role in medical settings. The ultimate goal is to facilitate communication, allowing all parties to function as autonomously and independently as anyone else in a similar situation. Interpreters are not advocates. They most likely do not know the medical or social history of the patient, nor would it be appropriate for them to share this information if they did know. Although they may periodically provide clarification, especially around cultural norms (this is called “cultural brokering”), it is not the role of an interpreter to explain things beyond what you have told the patient, check for understanding, or ensure appropriate follow-up. That is your job as the provider. The role of the interpreter is to afford individuals who do not share a common language the ability to effectively communicate with one another.
Working with sign language interpreters differs in some subtle ways from working with a spoken language interpreter. Although spoken language interpreters usually prefer to position themselves so that they can see both you and the patient, sign language interpreters need to be beside and slightly behind the provider so that the patient can see the interpreter and provider at the same time. This positioning, particularly during history taking, enhances rapport and improves the clarity of communication.
Spoken language interpreters need to interpret consecutively (you speak and then pause and allow the interpreter to repeat what you have said in the patient’s language) because they cannot interpret while you are speaking. Sign language interpreting can, for the most part, be done simultaneously. The interpreter will sign as you are speaking, usually a phrase or two behind you. You should address the patient directly. Do not say, “Tell him” or “Ask her.” Expect pauses in the conversation as the interpreter completes a phrase and receives the patient’s response. The patient will respond in his or her native language, and the interpreter will voice the patient’s response in the first person. When you hear the interpreter say, “I have a pain in my side,” he or she is simply repeating what was said or signed by the patient.
Interpreters may need to periodically ask for clarification of terms or concepts. If this is the case, a professional interpreter will make the request by stating, “The interpreter needs clarification.” This allows for distinction in role and clarity for the participants as to who is speaking at any given time.
At times, a hearing sign language interpreter will work in tandem with a Certified Deaf Interpreter (CDI): someone who is Deaf, a native user of ASL, trained as an interpreter, and familiar with many communication modalities used by a wide range of deaf people. Deaf interpreters are typically needed to communicate with patients who do not use standard ASL such as those from other countries using that country’s sign language or with Deaf people who have cognitive or physical barriers to using ASL and those who rely on idiosyncratic or “home” signs.
Interpreter errors do occur. One study revealed a mean of 31 errors per encounter made by interpreters in medical settings. As you should for any patient with whom you do not share a common language, check with your deaf patient frequently for understanding. As a supplement to your onsite communication through the interpreter or with your lip-reading patients, provide a written copy of critical material (e.g., medication dosage changes or follow-up instructions) whenever possible. Give complete information regarding new or changed medication orders because there will likely be no interpreter available at the pharmacy.
A Deaf woman was in the emergency department (ED) for acute pharyngitis. She was accompanied by her mother, who is hearing. The patient, patient’s mother, and physician assistant (PA) were all comfortable with having the mom interpret because she had developed fluency in ASL over the 20 years of raising her daughter. During the visit, as the provider was handing the patient her prescription, the provider asked if the patient was taking any medications. The patient said “No” even though she was taking oral contraceptive pills (OCPs). The appointment ended, and the patient went on her way, a prescription for antibiotics in hand. (Some medications can decrease the efficacy of OCPs and cause unintended pregnancy in some patients.)
This is a classic example of why family or friends should never be substituted for professional interpreters. It is likely the patient may not have wanted her mother to know that she was taking birth control pills and she therefore didn’t report it to the PA. The patient also has no reason to know that there might be an issue with taking OCPs and antibiotics together. The use of a professional interpreter allows for open communication between patient and provider without the interference or effects of a preexisting relationship interfering with accurate communication.
Providing Appropriate Care for Patients with Mobility Disabilities
As medical professionals, it is our duty to be aware of the challenges faced by millions of individuals with mobility disabilities in accessing proper medical care and to do everything we can to eliminate barriers. First and foremost, our role as PAs is to improve the health of all patients so that they can live full, productive, and independent lives. However, according to Healthy People 2020, patients with disabilities receive fewer screening and preventive services than their counterparts without disabilities. Screenings such as mammography and Pap tests are often not done because of lack of equipment that is accessible to women with mobility disabilities, especially women who are wheelchair users. This lack of screening and prevention, compounded by inadequate accessibility to services, leads to unnecessary health disparities and poor outcomes (see Case Study 48.2 ).
Patients with mobility disabilities may rely on wheelchairs and other ambulatory aids as a primary means of mobilization; others may require no assistive devices at all. And although some individuals may only use a device temporarily, many need some form of ambulatory assistance on a permanent basis. Spinal cord injuries, stroke, cerebral palsy, amputations, and a variety of neuromuscular diseases (Huntington disease, muscular dystrophy, and multiple sclerosis, to name a few) are some of the more common reasons that individuals may rely on a wheelchair or ambulatory aid. As a health care provider, you should have a basic understanding of the special needs and complications associated with mobility disabilities.
Terms and Definitions
Spinal cord injury (SCI): Trauma causing damage to a segment of the spinal cord and nerve fibers. The location and degree of damage to the neurologic tissues determine the sensory, motor, and autonomic effect as a result of SCI.
Autonomic dysreflexia (AD): A potentially life-threatening increase in blood pressure, sweating, and other autonomic reflexes in reaction to some type of stimulus below the level of the lesion in a patient with a spinal cord injury. AD typically occurs in people with spinal cord injuries above T6. The elevated blood pressure can lead to renal failure, cardiopulmonary failure, loss of consciousness, seizures, apnea, stroke, coma, and death.
Spina bifida: This neural tube defect results when the spinal cord, its surrounding nerves, or the spinal column develops abnormally during the first 28 days of gestation. It can affect the nervous, urinary, muscular, and skeletal systems, often causing bowel and bladder complications and paralysis below the spinal defect. In the United States, approximately 1500 infants are born with spina bifida each year. The use of prenatal folic acid dietary supplementation has decreased the incidence of spina bifida and other neural tube defects.
Amputation: The surgical or traumatic loss of a limb or digits. There are approximately 1.9 million people living with limb loss in the United States. Each year, the majority of new amputations occur because of complications of the vascular system, especially from diabetes.
Phantom sensations and phantom pain: Sensations such as movement, touch, pressure, itching, posture, and heat and cold can still be felt, although the body part is no longer present. Patients with amputations often feel intense pain that comes from a missing limb, finger, or toe.
A comprehensive description of all conditions causing mobility disabilities, such as cerebral palsy, multiple sclerosis, muscular dystrophy, Huntington and Parkinson disease, and stroke, is beyond the scope of this chapter.
Patients with mobility disabilities should be treated with dignity in all aspects of the health care encounter. It is imperative that your interactions with the patient be respectful, appropriate, and reassuring. In addition to talking to your patient about his or her disability and inherent complications or conditions associated with it, you also need to address the same topics you address with every patient, such as immunizations, risk assessment, and sexual health. Studies show that patients with mobility disabilities suffer from increased morbidity and mortality when providers do not address all aspects of their health and well-being.
When introduced to a person with a mobility disability, it is appropriate to offer to shake hands. People with limited hand use or those who wear an artificial limb can usually shake hands. Shaking hands with the left hand may be acceptable depending on the patient’s cultural background. For those who cannot shake hands, touch them on the shoulder or arm to welcome them and acknowledge their presence.
It is important to respect the patient’s personal space, including wheelchairs and other mobility aids. Avoid propelling the patient’s wheelchair unless asked. Sit across from the patient in a chair for eye-to-eye contact. Do not squat down in front of the patient or stand over him or her as you converse. This may be perceived as offensive and demeaning by the patient.
If the patient arrives with an assistant or companion, address the patient directly. Do not assume that patients with spasticity, paralysis, or speech difficulties also have an intellectual disability. Most patients with mobility impairment have normal intelligence and can participate fully in their health care. Provide an opportunity for these patients to speak with you alone. Be aware that all patients with disabilities are at increased risk for abuse and neglect.
Your patient is your best resource when it comes to accommodations and assistance she or he may or may not need. If there are concerns about barriers to performing a comprehensive examination, such as undressing, accessing the examination table, and positioning, ask your patients with movement disabilities for their recommendations to remove these potential barriers. It is important to remember that not all mobility disabilities are the same. Each individual may use mobility devices of different types, transfer in different ways, and have varying levels of physical ability. Working with the patients is the best way to ensure safe, efficient, and accessible health care for all individuals with mobility disabilities.
To ensure that the patient with a mobility disability receives equal medical care to that received by a person without a disability, ask the patient to disrobe and perform the examination on the examination table if this is required to provide comprehensive, appropriate care. Ask if assistance is necessary with transfers and dressing and undressing, and be aware that offering assistance with these tasks may require additional time or the assistance of another individual. Never leave the patient unattended unless he or she asks to be left alone. You should be alert to the potential for fainting because of a gravitational pooling of blood when transferring the patient. Seek out rehabilitation specialists in your community for training and assistance. Ask the patient which positions are most comfortable during the examination, and ask if assistance is necessary before giving it. Examination tables with varying height capabilities, back supports, and whole-leg rests are available. If your employer does not have an accessible examination table, you may want to discuss its value with the providers in your practice. An accessible table will benefit more than just your patients who use wheelchairs. Many patients, including older adults with arthritis and women in the last months of pregnancy, will appreciate a table that lowers, allows them to sit upright, and supports their legs.
Ensure that the patient is positioned comfortably if he or she is going to be sitting or lying still for an extended period of time. Pillows or pads may have to be adjusted between legs and wedged against the patient to decrease discomfort and reduce the risk of developing pressure sores. Patients with spasticity problems may need assistance holding still during procedures or examinations.
A complete examination should always include a sexual history. The sexual history is often neglected because of assumptions that people with limited mobility or paralysis cannot or do not have intimate relationships. These patients are still competent to maintain emotional and sexual relationships. The health care provider should perform the same inquiry for a patient with a mobility disability as he or she would for any other patient. It is also important to acknowledge the patient’s needs, desires, anxieties, and questions pertaining to sexuality.
When examining a patient with a mobility disability, it is critical to perform a comprehensive visual inspection of the skin to assess for pressure sores and open wounds. Provide appropriate annual health promotion and disease prevention screenings, such as Pap smears, mammography, prostate and rectal examinations, and oral health examinations for all patients.
Be cautious not to attribute all symptoms to an individual’s primary disability. Patients with disabilities can present with heart disease, gastroenteritis, and migraines—all unrelated to their particular disabling condition. Do not let a patient’s disability keep you from developing a comprehensive differential diagnosis list when assessing a patient’s problem or symptoms. Careful medical management and skilled supportive care are necessary to prevent complications in the patient with a mobility disability. Functional goals are defined as realistic expectations of activities that individuals with mobility disabilities eventually should be able to perform. It is important to continue with long-term physical and occupational therapy treatments for patients to maintain function and maximize participation in the activities of work and life.
Certain health issues must be followed closely to prevent complications in patients with mobility disabilities. Difficulties such as urinary tract infections, pressure sores, and AD could become life threatening if not treated properly and promptly. Common serious challenges faced by these individuals include exaggerated reflexes, impaired cardiovascular function, loss of bladder and bowel control, loss of normal thermoregulation, lost or decreased breathing capacity; impaired cough reflexes, and muscle spasticity.
Autonomic dysreflexia is considered a medical emergency for the patient with a spinal cord injury. The patient may become frightened during an AD episode. You must remain calm and at the same time react quickly. It is critical to lower the patient’s blood pressure as quickly as possible. This may be accomplished by raising the head of the examination table as high as possible. Sitting the patient straight up is best. Lower the legs and remove any abdominal binders and compression hose. You must remove or correct any potential stimulus, such as a vaginal speculum. Methods to prevent AD include performing a bowel program and catheterizations on a regular schedule, checking and emptying indwelling catheter leg bags often, changing catheters every 4 weeks to prevent any clogging, checking for pressure sores regularly, and maintaining good toenail hygiene to prevent ingrown toenails because any of these may trigger an episode of AD. It is important to educate the patient and caregivers about AD and the possible associated complications.
Methods to Ensure Access
Patients with mobility disabilities may find it difficult to access health care services primarily because of problems with physical accommodations. From parking to being able to get onto an examination table, people with mobility disabilities face many obstacles at medical facilities. Consequently, these patients are less likely to seek out and receive health services. As a health care provider, you can make a real difference in promoting the health of a population that is typically underserved.
When referring a patient for routine screening or specialty care, it is important to ensure there is accessible parking, including wheelchair van parking, which should include adequate space for a lift or ramp to deploy. Ensure that there is an accessible entrance to the facility and that it is clearly marked. Check to see if your local radiology service has an accessible mammogram machine that can accommodate patients in wheelchairs. When prescribing medication, ensure that the pharmacy can supply medication in easy-to-open containers that are accessible to individuals with hand disabilities. Office and medical staff should be educated to be respectful and to assume that a patient who is also a wheelchair user is likely to be fully employed, competent, and knowledgeable about self-care.
For more information about providing accessible care to patients with limited mobility, the DHHS in collaboration with the Department of Justice has produced an excellent guide for clinics and hospitals. This guide, titled Access to Medical Care for Individuals with Mobility Disabilities, can be viewed at www.ada.gov/medcare_ta.htm .