Issues Affecting the Blind and Visually Impaired

A demographic often overlooked or forgotten is the blind and visually impaired. This paper will take a closer look at this population and how the Associated Services for the Blind and Visually Impaired, a local Philadelphia organization, assists these individuals in overcoming the fear associated with their disability, relearning how to navigate life with a vision deficit and being a general emotional and social support system.

Associated Services for the Blind and Visually Impaired (ASB) is a public organization funded primarily by the state of Pennsylvania under the Department of Human Services. The majority of clients find ASB through a referral by their eye doctors after an initial diagnosis of degenerative vision loss. ASB offers an array of services to its clients including life skills courses, trainings on how to use specific mobility equipment and recreational enrichment.

According to Beth Deering, Director of Human Services for the Associated Services for the Blind and Visually Impaired, some of the most common issues faced by the blind and visually impaired population are isolation, illiteracy, and accessibility. “Many times feel forgotten and overlooked they go into public places, offices or appointments and are treated just like everyone else when they have a disability. It can be very discouraging”. ASB attempts to counteract this by offering clients assertiveness training. Loneliness and social isolation arises from interplay of gender, socio-economic status, and psychological factors including the personal experience of sight loss specific to each individual.

1 A report published by the national Federation of the Blind Jernigan Institute in 2009 found that less than 10% of the 1.3 million individuals who are legally blind in the United States read Braille and only 10% of blind children were being taught to read Braille.

2 If a blind individual is not learning or practicing Braille reading, they are the equivalent of illiterate.

This is an emerging critical point for the visually impaired population, exacerbated by the overall social dependence on technology. Whether one is visually impaired or not, society as a whole is turning away from traditional forms of communication toward audio and visual communication. Accessibility is perhaps the most obvious issue faced by this population. Vision loss incurs the individual the necessity to re-learn all activities of daily living. From how to bathe to navigating public transportation, the individual must re-learn his or her independence.

ASB currently has 244 active clients, the majority of whom have partial to full vision loss. Demographic statistics from 2017 showed that clientele were 58% female, 40% male and 2% undisclosed. 96% have a high school diploma and less than 1% have post-secondary education. Ethnic demographics showed 17% white, 70% black, 10% Hispanic, 1% Asian, 2% unidentified. 88% identified as living at or below poverty level leaving 12% reporting living above poverty level. 56% were under the age of 65. Almost all clients are currently unemployed and not actively seeking employment. The majority of clients reported primary income source as public support, namely Social Security.

Complicating factors affecting the health of the blind and visually impaired population amount to an overall decrease in quality of life (QOL), which is defined as a “complex trait that encompasses vision functioning, symptoms, emotional well-being, social relationships, concerns, and convenience.” Some of these complicating factors include dependence, mobility and falls, mental health, cognitive decline, mortality, and the inability to self-screen for disease. Until an individual has become competent in his/her ability to navigate all aspects of daily living without their sense of sight, they require assistance often round the clock. As one can imagine, loss of independence can be emotionally and psychologically damaging to the individual.

A prospective observational study performed by the American Academy of Ophthalmology recruited 819 patients between 2008 and 2011 from 28 out-patient clinical centers in the United States reported that among those seeking low-vision services,16.3% reported mobility as their chief complaint. Mobility correlates with incidence of falls among the visually impaired population. According to a 2016 study analyzing the annual prevalence of falls among persons over the age of 65, 46.7% of those with severe vision impairment and 27.7% of those without vision impairment reported at least one fall within the preceding year. These falls sometimes result in injury including fracture. A cross-sectional study among 143 adult patients presenting with visual deficits found that the strongest predictor of depressive symptoms was vision-specific distress.

Those with vision loss are more likely to experience symptoms of depression and/or anxiety when compared to the general population. Ms. Deering of ASB bolstered this finding stating, “mental health issues are highly prevalent among our clients the majority of our clients seek services just to avoid isolation and the lack of mental health services for these people is something that we are finding is a big issue”. Cognitive decline has observed in multiple studies to correlate with vision impairment.

Exact causation is unknown, but the concurrent incidence of visual deficits and cognitive impairment is more prevalent that Parkinson’s disease or emphysema. Multiple studies have indicated a link between vision loss and death. Suggested reasons for this finding include the high number of individuals with comorbid conditions including diabetes mellitus which in itself increases mortality, risk of fall and potentially fatal injury or death due to complications from falls, and even inability to perform self-care activities. Lastly, and perhaps most obviously, patients with visual deficits are unable to self-screen for any biologic changes. Diabetic patients who may have end stage retinopathy, are not able to self-screen their lower limbs for new or changing ulcerations. Changes in skin or moles will not be caught by patients. The lack of vision puts these patients at inherent risk.

Barriers to Healthcare Access

The blind and visually impaired population face unique barriers in their access to healthcare. The most immediate barrier is the lack of cultural competency of health care professionals in how to treat and care for these patients. Often times when entering a doctor’s office or hospital they are treated no differently than anyone else, when they do in fact have special needs. If they are accompanied by a friend or family member to assist with the appointment, often times the provider will speak to the friend or family and not directly to the patient themselves. Another barrier to care is the lack of mental health services specifically for this population. The loss of vision is associated with comorbidities such as anxiety, depression, PTSD, phobias and suicidal thoughts. Those who experience visual deficits are twice as likely to develop depression.

This gap in the mental health system is evident at ASB as Ms. Deering commented that the majority of their clients seek out services not necessarily for the skills learning but more so for the social interaction in an effort to avoid isolation. Finally, the fact that there are no laws stating that prescription bottles need to be user friendly for persons with vision loss presents a significant barrier for persons with vision loss. The American Foundation for the Blind launched an “Rx Label Enable” campaign to put forth regulatory guidelines for prescription labeling by teaming up with the American Society of Consultant Pharmacists Foundation.

Political Issues that Impact Access to Healthcare

The blind and visually impaired also face unique barriers when it comes to insurance coverage. At ASB specifically, the overwhelming majority of clients source their health insurance through Medicare or Medicaid. Medicare will cover one annual eye exam for those with diabetic retinopathy, one annual glaucoma test for those at high risk for glaucoma, and some treatments for age-related macular degeneration, and will only cover partial cost for corrective lenses in cases post cataract surgery. It is important to note that neither Medicare Part A nor Part B benefits cover routine eye care.

The benefits would only be available to one who additionally pays for a Medicare Advantage program. Medicaid vision benefits differ from state to state. In Pennsylvania, children are covered under Medicaid for two frames and four lenses per year. Adults are covered for two vision exams per year, and require specific diagnoses or managed care plan to be eligible for corrective lenses. These rigid qualifications mean that many people fall through the cracks in terms of coverage and getting the appropriate assistive devices.

Recommendations for Improving Healthcare Delivery

My personal recommendations for improving the delivery of healthcare to the blind and visually impaired population is to increase education of providers on how to effectively communicate with and accommodate patients with visual deficits. ASB is aiding in this improvement by inviting medical students to come interact with clients and teach them how to perform self-exams to screen for health problems.

Ways that I Could Make a Difference as a Provider

In my own practice as a PA I can incorporate the information I have gained from this project and from my conversations with Mrs. Deering to improve every interaction with a blind or visually impaired patient that I have. I can seek out more opportunities to expand my own cultural competency, having seen how far a little awareness can go. I will also be more likely to screen my patients that have visual deficits for possible depression, knowing how highly prevalent it is in this population.