CULTURALLY COMPETENT CARE FOR PATIENTS WITH A DISABILITY

A person with a disability has a condition that substantially limits one or more major life activities and makes it more demanding for them to interact with the world around them. A disability can be intellectual, developmental, or physical in nature (CDC, 2020b).

Disability impacts one or more of the individual’s:

Vision
Activity
Thought process
Memory
Learning ability
Communication
Hearing
Social relationships
(CDC, 2020b)

Approximately 25% of all adults in the United States state they have a disability (CDC, 2022e). The origin of disabilities can be genetic, acute, or progressive:

A person can be born with a disability, such as Down syndrome.
Disability can become evident during childhood development, such as autism spectrum disorder.
An injury can lead to disability, such as traumatic brain injury or spinal cord injury.
Chronic health conditions can lead to disability, such as vision loss or limb loss due to diabetes.
Disability can be progressive, such as muscular dystrophy.
(CDC, 2020b)

ABILITY BIAS

Ability bias occurs when assumptions are made about people based on physical and mental capabilities. One such assumption is that a disability is a “bad” thing that must be overcome. Ability bias can be reflected in the language used by healthcare professionals. For example:

“I have tragic news about your child.” vs. “We are here to help your child develop her strengths.”
“She is wheelchair bound and dependent on Medicare.” vs. “She uses a wheelchair and receives services and benefits to enable her to attend school.”
“The ultrasound results were poor because the patient’s disability didn’t allow them to get on the exam table.” vs. “We inquired ahead about the patient’s needs and arranged accommodations to allow for a quality ultrasound exam.”

(UCSF, 2023)

Health Disparities and Health Risk Factors

People with disabilities experience barriers to obtaining the healthcare services they need. The barriers can be physical or psychological.

A survey of physicians’ attitudes towards people with disabilities found that patients using wheelchairs were told to go to supermarkets, zoos, or cattle processing plants for their weight measurement.
Psychological barriers can include poor communication, inadequate knowledge related to disabilities, and biased attitudes. Clinicians can feel that patients with disabilities act “entitled” to accommodations that they need.
(Cascella, 2022)

The Americans with Disabilities Act of 1990 prohibits discrimination toward patients with disabilities. However, this does not mean that discrimination does not still occur. Discrimination, whether acknowledged or implicit, prevents people with disabilities from receiving proper care. In turn, this lack of care leads to health disparities (Cascella, 2022). Health disparities for people with disabilities that have been outlined in recent studies include:

Communication failure between healthcare professionals and the patient/caregiver
Financial limitations
Issues with attitude and behavior
Scarcity of medical services
Organizational and health system barriers
Transportation barriers
Lack of training for healthcare professionals
Language barriers
Lack of resources and technology
(Clemente et al., 2021)

Best Practices for Culturally Competent Care of Patients with Disabilities

Examples of elements of culturally competent care for patients with disabilities include:

Ensuring all facilities are accessible in compliance with ADA requirements
Providing individuals with access to communication aids and services, such as medical interpreters, signers, audio recordings, etc.
Using people-first language (see below)
Practicing disability etiquette when interacting, such as:
- Mobility impairments: Don’t push or touch someone’s wheelchair; bring yourself down to the person’s eye level to speak to them.
- Visual impairments: Identify yourself; don’t speak to or touch a working service animal. Acclimate the patient to the layout of the facility as well as any accessibility features.
- Hearing impairments: Speak directly to the person, not the interpreter; don’t assume they can read lips; don’t chew gum, wear sunglasses, or obscure your face.
- Speech disorders: Don’t finish the person’s sentences; ask the person to repeat or repeat yourself to confirm you understood.
- Developmental disabilities: Speak clearly using simple words; do not use “baby talk” or talk down to the person; do not assume they cannot make their own decisions unless you’ve been told otherwise.
Learning about the Americans with Disabilities Act of 1990 to better understand a clinician’s legal responsibilities for providing culturally competent care for people with disabilities
Asking patients if they require an accommodation as soon as they make an appointment to make sure the accommodation is ready for them when they arrive
Ensuring patient education materials are available in large type, Braille, or audio format
Speaking to the patient directly instead of communicating only with the caregiver
Requesting feedback from patients on how they feel they can be accommodated better in the future
Using the words that the person with a disability has stated they prefer
(SHP, 2018; Cascella, 2022)

USE PEOPLE-FIRST LANGUAGE

People-first language is a way of communicating with people with disabilities by focusing on the person first instead of the disability. Terms that were used in the past are not acceptable to use now and can be considered to be archaic and insulting. For example, it is not using people-first language to say that an individual with Parkinson’s disease is “afflicted by Parkinson’s” or a “victim of Parkinson’s.” Instead, emphasize that they are a person first by saying they are a person with Parkinson’s disease (Cascella, 2022; CDC, 2022e).

When using people-first language, it is important to remember that every patient is unique. Care should be individualized since the range of people with disabilities is diverse. Instead of highlighting the patient’s disability, the patient’s abilities should be the focus. Honing in on the individual disability of a patient could lead to stereotyping and depersonalization (Cascella, 2022).

GENERAL TIPS FOR PEOPLE-FIRST LANGUAGE
Tips	Use	Do Not Use
(CDC, 2022e; SHP, 2018)
Emphasize abilities, not limitations	Person who uses a wheelchair Person who uses a device to speak	Confined or restricted to a wheelchair, wheelchair-bound Can’t talk, mute
Do not use language that suggests the lack of something	Person with a disability Person of short stature Person with cerebral palsy Person with epilepsy or seizure disorder Person with multiple sclerosis Person with cystic fibrosis A person who is deaf/blind	Disabled, handicapped Midget Cerebral palsy victim Epileptic Afflicted by multiple sclerosis Victim of/suffering from cystic fibrosis The Deaf/The Blind
Emphasize the need for accessibility, not the disability	Accessible parking or bathroom	Handicapped parking or bathroom
Do not use offensive language	Person with a physical disability Person with an intellectual, cognitive, or developmental disability Person with an emotional or behavioral disability, a mental health impairment, or a psychiatric disability	Crippled, lame, deformed, invalid, spastic Slow, simple, moronic, retarded, defective, afflicted, special person Insane, crazy, psycho, maniac, nuts
Avoid language that implies negative stereotypes	Person without a disability	Normal person, healthy person
Do not portray people with disabilities as inspirational only because of their disability	Person who is successful, productive	Has overcome his/her disability/is courageous

CASE

Tony is a licensed practicing nurse who works at a family medicine medical office. He is working with Dee, a medical assistant who has worked at the clinic for decades. Tony is walking by the receptionist desk when he sees Dee hanging up the phone. She looks at Tony, rolling her eyes.

“Mr. Hernandez just made another appointment. Ugh, he’s so annoying,” Dee says.

“What do you mean?” Tony replies.

“Oh, you’ll see,” Dee replies. “I know you just started so you don’t know all the problem patients. He’s handicapped. So, we have to make sure everything is ready for him and his wheelchair. I mean, it takes three of us just to get him from his wheelchair to the exam table.”

Tony quickly realizes that Dee is discriminating against a person with a disability. He replies using culturally competent terminology, “My younger sister uses a wheelchair. She was born with cystic fibrosis. I know firsthand how she has had to deal with discrimination her whole life because of her disability. In fact, she’s the reason I became a nurse. People with disabilities are not annoying, and it’s our job as healthcare workers to provide them with accommodations so they can experience the world the same way as a person who does not have a disability.”

Dee says, “Thank you for sharing that with me, Tony. I think I need to learn more about people with disabilities so that I can provide better care to them.”