People with disabilities face both health disparities and health care disparities, according to Dr. Margaret Rogers. Dr. Rogers, chief staff officer for science and research at the American Speech-Language-Hearing Association, was the speaker for the 2019 Applied Health Sciences Distinguished Lecturer Series.

Health disparity, she explained, refers to the burden of illness, injury, or disability. Health care disparity refers to differences in health insurance coverage, access to and use of health care, and quality of care. She used research about people with aphasia to illustrate the challenges that people with communication disabilities may face in maintaining their health and receiving good care.

Aphasia is a neurological disorder caused by damage to areas of the brain that are responsible for language production and comprehension. It is often a result of strokes but can be caused by any traumatic brain injury. Typically a chronic disability, aphasia has a critical impact on communication and social connections for the 2.5 million people in the United States who have it. According to Dr. Rogers, research has shown that people with aphasia are less likely to be discharged to home from an inpatient setting and less likely to return to their jobs than stroke survivors without aphasia. They also participate in fewer activities and have a high risk of depression.

“There are a wide variety of international, governmental, and professional statements and guidelines which mandate that people with disabilities should have equal access to services,” she said. “However, communication access to health care has not been widely available to people with communication disabilities such as aphasia.”

Communication access means that people have the means and opportunities “to communicate effectively, meaningfully, accurately, and authentically in order to get equal, uncompromised access to goods and services.” A number of factors negatively impact communication access for people with aphasia, including:

• Lack of knowledge about aphasia among the general public—a recent survey revealed that fewer than 10 percent of respondents knew what aphasia was, and many people equate it with dementia.
• Poor understanding of aphasia among health care professionals, who often overestimate the language abilities of people with aphasia or fail to diagnose the condition and make referrals for ongoing care.
• Lack of reimbursement for services, such as speech-language pathology, after the acute phase of care.
• Insufficient training of family and other caregivers.

In addition to loss of employment and increased social isolation and depression, the consequences of poor communication access can include an increase in safety risks, problems understanding medical advice, and a high vulnerability to further health problems such as additional strokes. It is critical, therefore, that communication access gains the kind of attention that physical access has in the past. Beyond educating the general public and healthcare providers, Dr. Rogers also recommends educating policy makers so that they are compelled to create and adequately fund services for people with communication disabilities.