Structural and Systemic Barriers to Providing Long-Term Services and Supports to Aging d/Deaf Individuals: A Public Health Crisis on the Horizon

Background and Purpose:

While Deaf culture and identity development are well documented, there is a gap in knowledge regarding intersectionality of individuals who are elderly and born deaf. Persons referred to as ‘Deaf’ belong to the Deaf community, a minority group within our population equipped with its own culture and social norms, relying upon American Sign Language (ASL) as the primary language of communication. Approximately 1 in 100 US citizens identify as a member of the Deaf culture. Between 100,000 to 1 million Americans claim ASL as their primary language. Deaf individuals report lower subjective health status, have inadequate knowledge regarding preventative medicine, and demonstrate increased incidences of high risk health concerns, including obesity, suicidal ideation, and history of intimate partner violence. For elderly individuals, there is often a paternalistic assumption that sensory impairment indicates presence of a caregiver, or that age involves dependency; for Deaf individuals of any age, inability to hear is often the basis of assumptions regarding cognitive capacity or ability to function independently. This literature review identifies what is known about aging Deaf individuals and identifies important gaps in the knowledge base about healthcare access and support. We hypothesized that the overlap of Deaf and aging would magnify issues of access and support, and that there is a potential for healthcare disparity and unidentified risk among this population.

Methods:

For this systematic review, we used keywords: Deaf, aging, elderly, deaf health, and intersectionality, and adapted these as new keywords were identified in topical papers. We searched EBSCOhost, PsychInfo, PubMed, and Medline, as well as hand-searched references. We identified 40 papers related to both Deafness and aging, and excluded papers that dealt with children or individuals with hearing loss.

Results:

It is well established that both of these groups (Deaf and elderly) encounter structural and systemic barriers to healthcare, but little is written about Deaf older adults and healthcare access. Social justice issues related to healthcare for this demographic are compelling. Deaf patients visit a physician less frequently and have expressed fear, mistrust, and frustration. Although only 30-40% of words are legible through lipreading, most individuals do not know they have a right to a qualified interpreter, and physicians resist using ASL interpreters, relying on lipreading or family. Long-term care poses significant challenges, as facilites that accommodate ASL are uncommon. In a setting where a resident may need to be evaluated repeatedly for changes in mental status, lack of specifically trained staff can lead to mistakes in care. Residing in a facility with limited communication with others can trigger isolation and depression.

Conclusions and Implications:

Lack of cultural competence coupled with inconsistent access to interpreters in medical or long-term care settings may put individuals at risk for treatment without consent, isolation, or inadequate care due to communication barriers or misperceptions of expression or culture. Given known barriers to care for both aging and deafness and limited research on this topic, individuals may face unusual challenges, indicating a serious public health crisis on the horizon.