While a number of the disparate experiences and challenges Deaf and hard of hearing individuals encounter in healthcare settings are rooted in healthcare organizations’ failures to comply with legal requirements, not everything is covered under the scope of the law. 

We discuss these in further detail in this part of the white paper.

Communication Barriers

Effective communication is critical to ensuring a positive provider-patient relationship because it emphasizes the importance of collaboration and mutual understanding. Ultimately, the lack of effective communication denies Deaf and hard of hearing patients, companions and patient representatives full access to health information and the ability to participate fully in their own care or the care of loved ones.

These issues are driven by a plethora of communication barriers, including:

Lack of Language Concordant Healthcare Professionals

The vast majority of healthcare professionals are not Deaf or hard of hearing and do not know sign language. This creates a linguistic disadvantage for Deaf and hard of hearing ASL users. This is further compounded by healthcare professionals generally not being trained on how to appropriately interact with Deaf and hard of hearing patients and work with sign language interpreters.

Healthcare Organizations Failing to use Qualified Interpreters

In health care settings, a qualified interpreter is defined as one who is able to interpret effectively, accurately, and impartially, both receptively and expressively, using any necessary specialized vocabulary specific to healthcare, including assessments, diagnoses, and treatment and care plans.^[8]

Alternatively, a certified interpreter obtained certification from a certifying body that provides independent verification of an interpreter’s knowledge and capabilities to provide interpreting services.

The terms qualified and certified are often used interchangeably. While an interpreter may be certified, this does not mean that they have the requisite knowledge base and the ability to interpret in healthcare settings. It is through years of experience and participating in healthcare-related interpreting professional development workshops and training that interpreters become qualified to interpret in healthcare settings.

Ultimately, using qualified interpreters leads to fewer clinical errors, higher patient satisfaction, and better clinical outcomes.^[9] Moreover, qualified interpreters allow for the development of a genuine and trusting patient-provider relationship, a key component of the patient-centered care model that we expand upon in the next part of the white paper.

Healthcare Organizations’ Over-reliance on Video Remote Interpreting:

Much to the chagrin of Deaf and hard of hearing individuals, Video Remote Interpreting (VRI) is quickly becoming a one-stop interpreting solution for healthcare organizations.

VRI can contribute to cost savings and result in the almost instant availability of interpreters. Furthermore, there are a number of Deaf and hard of hearing individuals who benefit from VRI.

However, despite there being limits to the technology’s effectiveness and practicality in healthcare settings, VRI continues to be used in situations where:

• The Deaf or hard of hearing individual also has a visual impairment or low vision;
• The Deaf or hard of hearing individual is in a prone position and unable to view the VRI screen;
• The Deaf or hard of hearing individual has a cognitive impairment (i.e., developmental, dementia, Autism, Alzheimer’s);
• There are multiple Deaf and/or hard of hearing individuals present;
• The Deaf or hard of hearing individuals are experiencing a highly stressful or emotional situation (i.e., mental health crises, sexual abuse, or trauma);
• Hands-on teaching/education is being done; The Deaf or hard of hearing individuals or healthcare professionals express that VRI does not result in effective communication due to video freezing, lagging, and/or other technical issues; and
• Healthcare professionals are not familiar with how to operate the technology or troubleshoot technological issues.

The over-reliance on VRI, especially in situations where VRI does not meet the communication needs of Deaf and hard of hearing individuals, can adversely impact the patient experience and contribute to a healthcare organization facing liability.

Healthcare Organizations Failing to use CDIs

Leveraging their cultural and linguistic expertise, CDIs collaborate with hearing ASL-English interpreters to provide interpreting, translation, and transliteration services, utilizing ASL and other visual and tactical communication forms used by signing Deaf, DeafBlind, or hard of hearing individuals.

Using a CDI in a healthcare setting allows all parties involved to reach a more optimal understanding, reduce cultural confusion and misunderstandings, and use time and resources more efficiently.^[10]

Despite there being numerous benefits to utilizing CDIs, healthcare providers regularly do not provide CDIs in situations that include:

• Deaf and hard of hearing children with developing language ability;
• Deaf and hard of hearing individuals with cognitive or physical challenges that prevent them from fully utilizing a traditional ASL-English interpreter;
• Deaf and hard of hearing individuals who acquired ASL at a later age;
• Deaf and hard of hearing individuals fluent in sign languages other than ASL; and
• Highly stressful or emotional situations, including cases of mental health, sexual abuse and trauma.

Lack of Access for Non-Signing Individuals in Healthcare Settings

A large percentage of those who identify as Deaf or hard of hearing are not fluent in ASL and require access to other auxiliary aids and services, including real-time captioning services (e.g., CART), assistive listening devices, and visual/written materials. These accommodations are often not provided by healthcare organizations.

Consequently, non-signing Deaf and hard of hearing patients may resort to relying on their residual hearing, lipreading, and writing/typing back and forth, as well as using Automatic Speech Recognition (ASR).

Collectively, patient comprehension and treatment adherence can be compromised as these potential workaround solutions may not result in effective communication.

Specifically, relying on residual hearing can be impacted if a Deaf or hard of hearing individual struggles to hear and understand the person speaking due a number of reasons, including one’s level of speech comprehension, the level of background noise, and accented speech.

With respect to lipreading, only about 30% to 45% of the English language is discernible through lipreading, while contextualization and guessing determine the remainder.^[11] Lipreading abilities also vary and can be impacted by poor lighting, inability to see a speaker’s face, and proximity between the speaker and person lipreading. These issues may be further exacerbated if there are multiple individuals that an individual needs to lipread.

Writing/typing back and forth may result in truncated messages and potentially impact the integrity of the patient-provider interaction.

Last, but not least, while ASR is a speech-to-text software that converts spoken word to written word automatically, its accuracy ratings are subpar when compared to realtime captioning being done by a realtime captioner (e.g., via CART). Research has shown a range of 60-85% accuracy at best.^[12] Meanwhile, certified realtime captioners aim to be higher than 98% accurate.

Transcription errors with ASR can be attributed to a number of reasons, including the following common variables:

1. Accents and variations in rate of speech;
2. Homophones, homographs and homonyms;
3. Crosstalk aka overlapping dialogue;
4. Audio quality and background noise; and
5. Acronyms and industry-specific jargon.^[13]

Masks

Prior to the COVID-19 pandemic, healthcare providers often used non-transparent surgical masks. These masks can muffle speech and prevent individuals from lipreading and seeing facial expressions. Despite the increased level of awareness pertaining to the availability of transparent surgical masks, healthcare providers do not always use them.

Inaccessible Content and Platforms

When promotional and instructional videos regarding one’s healthcare are not captioned, they are inaccessible to Deaf and hard of hearing individuals and exacerbate health disparities and inequities.

Furthermore, when telehealth platforms do not enable a third-party interpreter or captioner to join a healthcare session, this can render the session completely inaccessible for those relying on an interpreter or captioner to ensure effective communication takes place. Consequently, this can negatively impact the provider-patient relationship and lead to worse health outcomes for Deaf and hard of hearing individuals.

Environmental Barriers

Environmental barriers can negatively impact a Deaf and hard of hearing individual’s ability to fully access health-related information.

Technology Interfering with Hearing Aids and Cochlear Implants

Motion sensors and auditory beeps coming from machines, monitors and other technologies used in a hospital environment can interfere with hearing aids and cochlear implants. Ultimately, this can impact sound quality and comprehension during critical encounters.

Emphasis on Audible Information

Healthcare settings often use audio-centered strategies and tools, including call buttons, video instructions that are not captioned, and vocalizing identifying information in waiting rooms. These can put Deaf and hard of hearing individuals at a disadvantage.

Systemic Barriers

Systemic barriers result in Deaf and hard of hearing individuals being further marginalized and encountering a vicious cycle of disparate experiences in healthcare settings.

Language Deprivation

As shared previously in this white paper, 95 percent of Deaf and hard of hearing children are born into non-signing hearing families.

Families with Deaf and hard of hearing children receive information and resources from early hearing detection and intervention (EHDI) systems, practitioners, and associated healthcare professionals. These often address the medical aspects of a Deaf or hard of hearing child’s hearing and speech abilities, including technology, assistive listening devices (e.g., cochlear implants and hearing aids), and auditory and speech therapies.

When these professionals emphasize that parents should depend solely on assistive listening technology and speech therapy rather than concurrently teaching children ASL, Deaf and hard of hearing children do not always receive the full breadth of resources they need. This includes access to a visual language such as ASL.^[14]

With respect to cochlear implants, the process of maximizing a cochlear implant’s full potential is significantly longer and more intensive than many people realize. It requires frequent mapping appointments and aural therapy to train the brain to hear various frequencies as natural sounds. During this time, Deaf and hard of hearing children that do not have access to ASL are generally not exposed to language as early on during the critical period of language acquisition compared to their hearing peers.^[15]

Collectively, in the absence of having access to a natural language, the risk of harm from language deprivation is heightened. These children may demonstrate deficiencies in cognitive development, specifically executive functioning areas such as memory, planning, attention, relations, critical thinking, and conceptual learning.^[16] These lead to academic difficulties and underperformance when Deaf and hard of hearing students arrive at kindergarten.^[17]

The long-term effects of early language deprivation or limited language exposure are often so severe that they result in serious health, education, employment, and quality of life issues.

Culturally Insensitive or Unaware Healthcare Professionals

Receiving culturally sensitive and responsive care is not included under the umbrella of legal protections afforded to people with disabilities.

However, as emphasized by the National Standards for Culturally and Linguistically Appropriate Services (CLAS) in Health and Health Care developed by the U.S. Department of Health & Human Services, Office of Minority Health, delivering culturally and linguistically appropriate services is a way to improve the quality of services provided to all individuals, which will ultimately help reduce health disparities and achieve health equity.^[18]

While many healthcare professionals are exposed to the physiology of the ear during their studies, they are not adequately prepared to provide culturally sensitive and appropriate services to Deaf and hard of hearing individuals.

Healthcare professionals are also not well-versed in working with interpreters and CART providers. Instead, some ask Deaf and hard of hearing patients to lipread or write/type back and forth with them.

Furthermore, they also may not be familiar with relevant health inequities impacting Deaf and hard of hearing individuals, including the variety of communication barriers this community encounters in healthcare settings.

Last, but not least, healthcare providers may not be familiar with beliefs and practices that may impact a Deaf or hard of hearing individual’s health and well-being. Instead, they may be fixated on Deaf and hard of hearing patients’ personal decisions regarding their hearing, even when it is completely unrelated to the condition(s) they are seeking treatment for.

Policies and Procedures

The provision of care is shaped by organizational policies and procedures.

Consequently, a number of the communication, environmental, and systemic barriers that impact the delivery of care are a byproduct of ineffective and incomplete policies and procedures.

When policies and procedures are ineffective and/or incomplete, they do not provide healthcare organizations’ employees with the proper tools and strategies to carry out procedures in alignment with policies. Additionally, ineffective and/or incomplete policies and procedures can also lead to inconsistent practices and expectations throughout the healthcare organization with respect to the provision of auxiliary aids and services.

Last, but not least, organizational policies and procedures set standards and expectations for the types of training healthcare professionals and administrators shall receive. If the types and frequency of training to be delivered are not clearly delineated in an organization’s policies, healthcare providers and administrators may not receive adequate training. The absence of adequate training can ultimately negatively impact the patient-provider relationship and the delivery of care.

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^[8] See 28 C.F.R. § 36.104.

^[9] See Position Statement On Health Care Access For Deaf Patients. Available at https://www.nad.org/about-us/position-statements/position-statement-on-health-care-access-for-deaf-patients/.

^[10] See Registry of Interpreters for the Deaf’s Use of a Certified Deaf Interpreter Standard Practice Paper, Available at https://rid.org/standard-practice-papers/.

^[11] Communication strategies for nurses interacting with deaf patients.. (n.d.) >The Free Library. (2014). Retrieved Oct 27 2022 from https://www.thefreelibrary.com/Communication+strategies+for+nurses+interacting+with+deaf+patients.-a0168333891.

^[12] Filippidou, F., & Moussiades, L. (2020). Α Benchmarking of IBM, Google and Wit Automatic Speech Recognition Systems. Artificial Intelligence Applications and Innovations: 16th IFIP WG 12.5 International Conference, AIAI 2020, Neos Marmaras, Greece, June 5–7, 2020, Proceedings, Part I, 583, 73–82. https://doi.org/10.1007/978-3-030-49161-1_7.

^[13] See Understanding Word Error Rate (WER) in Automatic Speech Recognition (ASR), Available at https://www.trywingman.com/blog-posts/what-is-word-error-rate-in-automatic-speech-recognition.

^[14] Humphries, T., Kushalnagar, P., Mathur, G., Napoli, D., Padden, C., Rathmann, C., & Smith, S. (2012). Language acquisition for deaf children:  reducing the harms of zero tolerance to the use of alternative approaches. Harm Reduction Journal, 9(16).

^[15] Murray, J. J., Hall, W. C., & Snoddon, K. (2019). Education and health of children with hearing loss: the necessity of signed languages. Bulletin of the World Health Organization, 97(10), 711–716. https://doi.org/10.2471/BLT.19.229427.

^[16] Hall, M. L., Hall, W. C., & Caselli, N. K. (2019). Deaf children need language, not (just) speech. First Language, 39(4), 367–395. https://doi.org/10.1177/0142723719834102.

^[17] See Position Statement On Early Cognitive and Language Development and Education of Deaf and Hard of Hearing Children. Available at https://www.nad.org/about-us/position-statements/position-statement-on-early-cognitive-and-language-development-and-education-of-deaf-and-hard-of-hearing-children/.

^[18] See National CLAS Standards, Available at https://thinkculturalhealth.hhs.gov/clas.