Disability: Definitions and framework

The Americans with Disabilities Act (ADA) defines a person with a disability as someone who has a physical or mental impairment that substantially limits one or more life activities. 

An impairment is a difference in function at the cellular, tissue or body level. Impaired pancreatic beta cell function causing diabetes and rotator cuff injury decreasing shoulder range of motion are impairments.  Those impairments becomes a disability when they interact with the surrounding environment in a way that doesn’t allow an individual to do the thing they want to do.

In the medical model of disability, an individual’s impairment is seen as the ‘problem’. The impairment causes the disability. The medical profession focuses on treating or curing the individual by altering the severity of their impairment. This often reductionist view focuses on the individual and tries to adapt the disabled person to lead a more ‘normal’ life. In other words, the disabled person needs to adapt to fit into the world as it is.

Contrast this with the social model of disability, which posits that disabilities are due to societal barriers, that people become disabled due to a lack of resources and access. Although they may have functional impairments or limitations, these do not have to lead to disability.  Inaccessible architecture and transportation, discrimination and bias, segregation, lack of useful education and employment opportunities, and poverty all contribute.

The Americans with Disability Act is a civil rights law that prohibits discrimination and provides equal opportunity for persons with disabilities in employment, government services, public accommodations, commercial facilities, and transportation.  Although it relies on the medical model of disability to classify people with impairments as disabled, it also seeks to create a more even playing ground and to address some of the issues highlighted by the social model of disability

International Classification of Function

The International Classification of Functioning, Disability, and Health (ICF) was developed by the World Health Organization to provide standard language and a conceptual basis for the definition and measurement of disability at the individual and population levels. You have also seen this model in MBB. It integrates the major models of disability – the medical model and the social model – recognizing the role of both environmental factors and of health conditions in the creation of disability.

The ICF model illustrates that a person’s health condition can impact their body’s function and structure, reducing their activity and their ability to participate in the things they want to do.  Activity and participation are also affected by environmental and personal factors, and there’s a two way interaction between many of these factors. For example, reduced activity can lead to loss of strength, further limiting body function, activity and an individual’s participation in desired activities.  Inability to participate in the things one loves to do can lead to loss of motivation, further decreasing activity and participation. Each of these factors contributes to a person’s ability to participate in their relationships, vocation and community.

To illustrate how these factors interact, we’ll hear from UW Medicine patient named Emily and her parents, who graciously agreed to be interviewed for our students’ education.

Emily’s story

Emily and her family describe the impairments they noticed in her early childhood, the impact of these impairments on her activity and participation, and the personal strengths and family support that have ultimately allowed her to thrive.

Emily’s story: Environmental factors & participation

Emily’s story illustrates the critical role of the environment as she compares and contrast her function and participation in two different environments with different wheelchair accessibility.

Emily’s story: Personal factors & participation

Emily and her family describe her goals and personal strengths – strengths that have allowed her to participate fully in education, working towards her ultimate goals.

Disability, disparities and bias

Despite the prevalence of disability, disabled communities continue to be underserved by the health care system. People with disabilities report more difficulty with access and are less satisfied with their healthcare.  They have higher levels of unmet health needs, and are screened less frequently for preventable and treatable conditions.

Take a few minutes and think about why these disparities exist.  One major contributor is access – the difficulty getting to and from destinations, in and out of clinics, on and off exam tables.  Another contributor is difficulty with communication, which is discussed in detail later in the chapter. Yet another is bias, either conscious or unconscious.

Our culture tends to value physical perfection and conformity to a particular ideal. Our paradigms can be limiting and make us less able to meet each person as an individual. People with disabilities often tell stories about the assumptions that other people make – that somebody in a wheelchair, for example, must have a cognitive disability, or that they have some needs that must be addressed by the person whom they’re encountering.  When bias, stigma, and assumptions enter clinical encounters, it makes it less likely that a visit will have the intended outcome and that a patient will return.

Disability: What clinicians should know and do

Please read “Three Things Clinicians Should Know About Disability” by Dr. Joel Michael Reynolds, an ethicist and disability scholar. The complete essay is embedded below and available at this link.

Dr. Reynolds’ recommendations reflect true patient-centeredness: acknowledge your patients as the experts in their own goals and function, integrate your clinical understanding with their lived experience, and share decision-making.

Respectful and non-stigmatizing language

The Center for Disability Rights has developed Disability Writing & Journalism Guidelines that may help you choose language for your written notes and oral case presentations. Note that the terms “impairment” and “patient” are discouraged for the media, but they are appropriate for medical use – rehabilitation specialists distinguish between the impairment in bodily structure and function and disability.

These guidelines also describe the use person-first versus identity first language. Although we have generally recommended the use of person first language in notes and OCPs, this is one situation where you should use identity first language IF that is your patient’s preference.  More from the guidelines:

“Many journalists have been taught to use person first language (PFL), because it puts the person first, before the disability. However, an emerging camp of disabled people is making it known they prefer identity first language (IFL), especially those involved in disability activism.

Those who use IFL feel that PFL supports the idea that the disability itself is harmful, so it needs to be ignored or de-emphasized. They believe their disability is a part of their identity, while acknowledging it can sometimes make their life harder, especially due to lack of accessibility and other forms of ableism. Their disability is not something they are ashamed of, and they do not wish to de-emphasize it. Identity first language allows disabled people to acknowledge both the good and bad aspects of having a disability. IFL is still an emerging concept in the United States, although it is preferred in many European countries including England.

On the flip side, those using PFL believe the emphasis is always on their disability, and they are more than that. These individuals do not identify as disabled. They are people first. Certain communities, such as the Down Syndrome community, prefer people first language. Many people working in fields that heavily interact with disabled people, such as social work or physical therapy, have been taught to use person first language, and many parents of disabled children use it, as well. Some insist on using PFL, even to the point of ignoring the wishes of disabled individuals. You should never force language choices on anyone. It is up to each individual to determine how they wish to identify, and that should be respected.”

Communication disorders and optimizing communication

Communication barriers contribute to disparities in both experiences and outcomes for those with a disability. Fostering a therapeutic relationship, gathering information, and negotiating a patient centered plan can all be more difficult when your patient has a significant speech, language or hearing impairment. The goals of the interview do not change, but you may need to communicate differently in order to accomplish them.

This section introduces etiquette and practical strategies to improve communication with people who have communication disorders.  It was developed by Dr. Mike Burns, a University of Washington Speech and Language Pathology professor who appears with clients in the videos below.  Speech language pathologist (SLPs) are master level trained clinicians who specialize in the assessment and treatment of communication and swallowing disorders. They’re the colleagues you will rely on to help when your patients struggle to communicate.

Communication is considered disordered when it deviates from typical and causes unwanted attention to itself, interferes with communication, or causes distress in the speaker. In contrast, communication differences are situations where people speak a different language or dialect, or speak with an accent or cultural difference – the chapters on cross-cultural communication and working with interpreters are good references for these.

Four categories of communication disorders

1. Language disorders

Aphasia is the most common language disorder in adults, and is usually caused by a stroke or other brain injury. People with aphasia have difficulty encoding their thoughts into words and sentences to convey them to other people. They may also have difficulty decoding what they hear or read to decipher others’ messages.

Aphasia can affect all aspects of language including auditory comprehension, reading comprehension, and verbal and written expression. Modalities may be affected to a different extent, however, and people often have relative strengths and weaknesses. It’s important to remember that aphasia is a disorder of language not a disorder of intellect. The brain damage that caused the aphasia may also cause cognitive difficulties but that is often not the case.

Broca’s aphasia is usually caused by damage to the left frontal cortex.  Speech is characterized by hesitation coming up with words and substituting the wrong word.  Auditory and reading comprehension are relatively spared, and people with Broca’s aphasia are often aware of the problem because they can hear, interpret and monitor the words that they are saying.

Wernicke’s aphasia is typically caused by damage to the left temporal cortex, which causes greater impairment in comprehension.  People with Wernicke’s aphasia often have fluent speech, meaning it flows effortlessly and may have relatively good grammar, but the content is often incorrect or the wrong words are used so the overall message may be lost. Because people with Wernicke’s aphasia have comprehension problems, they are less likely to be aware of their difficulty with communication, particularly if it’s severe.

In this video, Dr. Burns, interviews a stroke survivor named Don, who has non-fluent aphasia, about his history of stroke. What strategies do you see that help Don get his message across?

2. Speech disorders

Speech disorders can be caused by damage to the speech structures themselves, for example the tongue or the mouth, or damage to the neural control of those structures.  Common speech disorders include:

• stuttering, a fluency disorder
• dysarthria, which is caused by neurological injury
• problems with voice caused by injury or impairment of the larynx

3. Cognitive communication disorders

Brain damage in the areas of memory, attention, problem solving or judgment can cause changes in cognition that affect communication. A conversation may seem to be reasonably coherent, fluent, and grammatically correct but the person may not be able to process or recall anything that was discussed. In other cases, it is clear that the person is confused as their narrative is not coherent. People with cognitive communication disorders are often tangential, likely because they can’t attend to the topic they were discussing, and they may not be aware of it. They may miss social signals in conversations, such as subtle facial expressions or gestures that signal that it is time to allow the other person to speak, or they may say things that are not typically considered socially appropriate.

In this video clip, Mike, a traumatic brain injury survivor talks about the fall that led to his injury. You’ll notice that he gets off topic, eventually forgetting what he was talking about.

4. Hearing disorders

As you’ve learned, conductive hearing loss is caused by problems conducting sound through the outer or middle ear. Sensorineural hearing loss is caused by problems transmitting that sound from the inner ear to the brain. Sensorineural hearing loss decreases both sound loudness and sound clarity – it’s not just an issue of turning up the volume, which often turns up the distortion as well.  Hearing disorders often co-occur with and make other communication disorders, like aphasia or cognitive-communication disorders, worse.

Strategies for optimizing communication

The mnemonic FRAME outlines strategies that FRAME conversations to optimize your patient’s participation.

F: Familiarize yourself with your patient’s communication

Your patient may already have an effective method of communication. Ask how they best express themselves and whether they have any communication aids or devices that should be used.  Also ask about their preferences for communication: Is it ok for you guess the messages that are trying to deliver or do they not like that? Do they want family members to help or do they prefer to try to get the message across themselves?

If you are concerned, you can establish that your patient understands you and that you can trust their responses by asking simple yes no questions that you know the answer to, such as their birth date or the name of their spouse.  Avoid questions such like “do you understand what I’m saying” since that is what you’re trying to assess.

In this video clip, you’ll hear Mike talk about different strategies that help him remember information. This is useful to know upfront so that you can use these strategies while you talk.

R: Reduce your rate

People with communication disorders say that speed is the biggest barrier to their communication. Slow down slightly but not so slow that you sound robotic, keeping your tone natural and not child-like. Take frequent pauses to allow for processing and give patients a bit of extra time to formulate a response. Many people with communication problems understand what you say but need a little extra time to get out a response.

A: Assist with constructing the message

People who have communication disorders may need help answering your questions. If you notice this, try using more response-choice questions, which can often be more efficient. Open-ended questions should be used judiciously as they can be more difficult to answer.  Yes/no questions are easiest to answer but too many yes/no questions can be frustrating for both patients and providers.

In this clip you’ll meet Jimmy, a man with aphasia following stroke.  Notice the variety of strategies used to assist him in communicating his message.

M: Mix communication modalities

Supplementing your verbal message with another modality can make it easier to understand. Use visuals, like pictures or simple drawings or write down key words.  Avoid writing everything down – it takes too much time and can be too much to process. Instead write words or short phrases that represent the key idea.

Your patient may also choose to write, so have materials within reach – pen, paper and maybe a dry erase board.  You can also keep pictures handy to represent words that often come when talking to patients, pointing to them yourself or allowing your patient to point to help construct their message.

In this video, you’ll see Don, again using writing as an additional strategy when speech isn’t working very well.

Augmentative and alternative communication (AAC) devices can be low tech or high tech. Low tech examples include a memory notebook for someone with cognitive issues or an eye gaze system for someone who can’t move their limbs and needs to point using their gaze. High tech examples include electronic devices such as phones or tablets or a speech generating device that is actually an alternative to verbal communication. The most important thing to remember about AAC devices is that if your patient uses them, you should try to incorporate them in your conversation.

In this clip Dons asks to use an alphabet board to spell out a word after it’s not understandable when he tries to say it, a strategy that is more often used by people with speech problems.

E: Engage the patient first

Patients and caregivers often communicate as a team but it’s important not to focus on the caregivers just because it’s easier to talk with them.  Talk directly to your patient and remember not to talk down. Just because they struggle to communicate doesn’t mean they struggle to think or have nothing to say.  Be sure to involve them in the discussion and decisions about their care.

Strategies to try with specific communication disorders

Aphasia

For patients with aphasia, who have trouble encoding and decoding messages, try to use less language.  This doesn’t mean dumbing down your message – just use plain language and as few words as necessary to get the message across.

Consider offering response choices instead of asking open ended questions. You should also mix modalities, supplementing what you’re saying verbally with gestures, body language, pictures or maybe some key word writing. Remember that although all language modalities may be affected, it’s likely that not all are affected to the same degree.  Offer non-verbal strategies that match areas of strength, like writing for someone with nonfluent aphasia.

In this video, Don is answering a question about how communication works when he goes to the doctor – notice the variety of different modalities used to help get his message across.

Speech disorders

If you don’t understand your patient with a speech disorder, like dysarthria, don’t pretend that you do.  They’ll often know that you didn’t understand and you can quickly lose their trust.  Let them know, and allow extra time to help them slow down their speech, hopefully to be more understandable. Or if you understood part of what was said, let the patient know what you understood and what you didn’t. That way they can repeat only what you didn’t understand.  If speech isn’t working, consider mixing communication modalities. An alphabet board or pen and paper could be good options for people with speech disorders who are able to to spell and have intact language. 

Cognitive communication disorders

When communicating with patients who have cognitive communication disorders, remember that they may be easily distracted. Be sure to get their attention before providing important information, by touching their arm or hand or starting off with their first name. It’s also important have a method of ‘backing up’ any information you discuss, so they have a reference once the conversation’s over. Written materials can be helpful if they’re easily understood. Family members can also be used as an effective backup system, and printed or email summaries can be helpful reminders.

In this video clip you’ll see that Mike has more difficulty remembering things when they’re presented only verbally. When things are presented visually he has more of a chance of remembering later. This has important implications for his physicians – if they write something down when they’re talking to him he’s more likely to recall it the next time he needs it.

Hearing Loss

Remember that louder is not always better – clarity of sound is part of the equation for many people with hearing loss, and loud sounds can quickly become painful, especially for those who wear hearing aids.  It’s better to focus on improving the clarity of your speech, by facing the person, making sure you are at eye level, slowing your rate slightly, and/or adding in any non verbal communication modalities that you think might be helpful. In the hospital, be sure that your patient’s hearing aids are in place and turned on before you start.

Eliciting a functional history

Function is complicated. If you made a specific list of all the things that you have done, from the moment you woke up until now, you’d find that it encompasses many domains of function. You probably rolled over in bed, got up, walked from the bed to the bathroom or into the kitchen. You got yourself dressed, brushed your teeth, combed your hair.  You take those for granted, but for people who have impairments, the way to accomplish these tasks may not be as self-evident as it is for you.

Because function is complicated, it’s divided into smaller domains: mobility, activities of daily living (ADLs), cognition, communication, vocation (education or employment) and avocation (fun). All of these point towards function, activity, and participation, which is the goal.

In the clinic setting, an initial questionnaire about function may be completed before the visit.  Two tools that are commonly used to assess the ability to perform ADLs the the Katz Index of Independence in ADLs and the Lawton iADL Scale.

When eliciting a functional history, you could start with your patient’s goals – what are they hoping to be able to do? With these goals in mind, you can explore the relevant functional domains in more detail.  You can also start by asking open ended questions about a typical day at home and routine activities.  You could follow up with more specific questions targeting major functions.

If you identify a gap between current and desired function or a significant challenge, you could refer your patient to the appropriate therapist.  Physical therapists specialize in ambulation and mobility (including assistive devices and wheelchairs). Occupational therapists can optimize the ability to perform ADLS and participate in employment and hobbies, and speech and language pathologists specialize in communication and cognition.