Keeping an Eye on Low Vision Patients

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Just three years into his career as an ophthalmologist, John D. Shepherd, MD, seriously injured both his knee and back, bringing much of his life to a virtual standstill.¹ After months of debilitating pain, his doctor announced, “There’s nothing more we can do for you.” He went into a deep depression but also experienced an epiphany: this was exactly what he’d been telling his low vision patients.

Declarations like this often exacer­bate the fear of complete blindness for patients, said Lylas G. Mogk, MD, at the Center for Vision and Neuro Rehabili­tation at Henry Ford Health in Detroit. “In fact, fear of the future is terrifying, with many of them saying that losing vision is worse than facing cancer.”

Prior to his own experience, Dr. Shepherd gave all of this much less thought than he does today. The epi­sode led to an evolution in his practice from comprehensive ophthalmologist to director of the Weigel Williamson Center for Visual Rehabilitation at the University of Nebraska Medical Center in Omaha, Nebraska, in 2008.

Wave of the future? Both Dr. Shep­herd and Dr. Mogk—as well as Mona Kaleem, MD, at Johns Hopkins Medical Institute in Baltimore—benefit from having in-house vision rehabilitation programs available for their patients within their academic departments of ophthalmology. “The ideal venue for vision rehabilitation, these programs

 bring hope and help to their patients with permanent vision impairments in their metropolitan areas and beyond,” said Dr. Mogk. Today these depart­ments can be easily established with a team of an optometrist specializing in low vision and a specially trained occupational therapist, she said. “What made this possible? Medicare coverage for vision rehabilitation services gained just two decades ago.”

A brief history. “Blind rehabilitation” preceded vision rehabilitation. It was developed for blind veterans returning from World War II and later used for babies with retinopathy of prematurity, who benefited from braille and white cane training, said Dr. Mogk. She added that blind rehabilitation developed outside of medicine—first through the U.S. Department of Veterans Affairs and then through state governments and school systems.

 With an expanding population of aging patients presenting with macular degeneration in the mid-1990s, ophthalmologist Don Fletcher, MD, posed an obvious question, “If you can get occupational therapy for a broken finger, why not for vision loss?” He proceeded to secure a verbal agreement with his regional Medicare carrier to cover occupational therapy for vision rehabilitation. Dr. Mogk then authored—and persuaded her Michigan regional Medicare carrier to accept—the first written policy covering occupational therapy services for beneficiaries with visual impairments.

National policy, standard of care. Following more advocacy by the Acad­emy, Medicare coverage for patients with low vision became national policy in 2002.² The criteria for vision rehabili­tation with an occupational therapist is any one of the following, from any cause, that compromises reading or daily function:

• Best-corrected visual acuity of 20/70 or less, or
• Central scotoma, or
• Visual field loss 

RING SCOTOMA. (1) Macular perimetry with the scanning laser ophthalmoscope shows a large dense scotoma (DS) surrounding the fixation point (red), allowing good single letter acuity but poor continuous print reading (VS = variable scotoma). Note that the scotoma is not consistent with the visible areas of geographic atrophy. (2) Another patient with good single letter acuity but with fixation (red) in a minute island surrounded by a large DS, eliminating the possibility of reading even a whole word. Note that in this case the scotoma also extends well beyond the visible areas of geographic atrophy and is not identifiable on ophthalmoscopy.

Who Needs Vision Rehab?

“Many ophthalmologists are not getting low vision patients into the hands of those who can address their impair­ment,” said Dr. Shepherd. Why not? The reasons are multifaceted—from physician time constraints, miscon­ceptions about low vision, and lack of knowledge about the resources that are available, to a scarcity of vision rehabili­tation services.

Errors of omission. When physicians focus mainly on visual acuity, patients with significantly altered visual percep­tion and loss of functional vision—for example, those reading a letter at a time due to a central ring scotoma—don’t get readily referred for vision rehabili­tation, said Dr. Mogk. “The experience of low vision patients parallels that of stroke patients, who weren’t being sent for stroke rehabilitation 45 years ago,” she said.

But is it part of comprehensive eye care, asked Dr. Shepherd, to research and learn about vision rehabilitation and help those with irreversible vision loss find what they need to live as well as they can? “I say, yes, a thousand times yes.” Otherwise, patients must fend for themselves, he said, and may experience social, emotional, and phys­ical challenges.²

In the dark about vision rehab? Because the field of vision rehab is relatively new, said Dr. Mogk, many people have never heard of it and don’t realize that there’s more to it than just offering patients a magnifier or fancy device. “Providing or directing patients to vision rehabilitation services has only recently been designated by the Academy as the standard of practice in ophthalmology,” she said.

“Vision rehab helps patients reen­gage with their life in a variety of ways,” Dr. Shepherd said. “To help them read more easily, for example, using audio­books might be the best solution, as opposed to purchasing a sophisticated $6,000 tool. As ophthalmologists, we must remember that our training con­centrates on the surgical and medical management of eye disease, not on the management of the impairment caused by the disease. For the sake of our visually impaired patients, however, we need to be aware of vision rehabil­itation services and how to recognize which patients to refer.”

What You Can Do

“You can restore a person’s life by ad­vising about the benefits and referring the patient to a vision rehab program,” said Dr. Mogk. “Your referral carries a lot of clout,” added Dr. Shepherd. “If no vision rehabilitation program exists in your area, the best thing you can do is give patients the Academy’s patient handout [Making the Most of Your Re­maining Vision: Tips and Resources for People With Vision Loss, see “Resources”],” said Dr. Mogk. “This helps them help themselves.”

Ask a question. “Ophthalmologists often don’t ask questions about low vision, not because they don’t care but because it’s not their natural focus,” said Dr. Shepherd. It is critical, however, to identify low vision patients who need help. “When you see a patient with low vision, do you take 10 seconds to ask, ‘Does your vision loss impair your ability to participate in your day-to-day activities?’” he said. “If a patient starts providing details that require copious amounts of time, you can respond by saying, ‘I’m so glad you’re sharing this because I want to refer you to some­one who can help.’” This might be an optometrist, occupational therapist, ophthalmologist, or your state services for the blind, for example. If a patient is a candidate for low vision rehab services, the referring ophthalmologist can instruct their office staff to provide the patient with helpful information for local services or online materials, he said.

Delegate. Since assessment of these patients takes time, which is at a pre­mium for doctors, Dr. Kaleem recom­mends training technical staff to start the conversation with patients. “Getting answers to just these three questions may help identify people who could benefit from vision rehab resources,” she said.

• “Have you had a fall in the last six months?”
• “Do you feel comfortable driving?”
• “Do you have difficulty reading?”

In addition, a quality-of-life survey may help spot those who could benefit, said Dr. Kaleem. For this purpose, she is developing a tablet-based, quality-of-life survey, called GlauCat (Glauco­ma Computerized Adaptive Test). “It’s fairly streamlined, making it easy for patients to use at home before appoint­ments or in most clinical settings,” she said, and the doctor can review it as part of the intake. “The goal is to help patients communicate with providers about the issues they are having with their vision and how it relates to their daily functioning. It helps get the con­versation started with patients.”

Refer early. Dr. Kaleem emphasizes the importance of recognizing that vision rehab is not just for those who are legally blind. “Refer earlier than you think you might need to,” she said. That’s when the best-corrected visual acuity is 20/40 or 20/50, said Dr. Shepherd. Unfortunately, some patients have stopped reading for three years and wonder why nobody mentioned that there were services to help them, he said. “If you engage and refer them early, they learn what’s out there and their reading is not interrupted, helping them to avoid going down the path of apathy, frustration, or depression.” Dr. Mogk added, “If you would consider 20/50 acuity poor enough to remove a cataract, it is also poor enough for referral to vision rehabilitation.”

Familiarize yourself with resources. Dr. Mogk recommends that ophthal­mologists identify low vision resources in the community. Some areas around the country have private, nonprof­it agencies that offer rehabilitation services. Examples include Commu­nity Services for Vision Rehabilitation in Mobile, Alabama, Spectrios near Chicago, and Lighthouses and other associations for the blind and visually impaired around the United States. Many of them now serve patients whose vision is better than legal blind­ness, which is the usual requirement for state services, said Dr. Mogk.

Dr. Kaleem also recommends taking the time to attend sessions on vision rehabilitation at the Academy’s annual meeting. (See “More at the Meeting.”) A high priority, said Dr. Mogk, is to give your low vision patients the Academy’s Making the Most of Your Remaining Vision handout.

Academic vision rehab programs. In those areas of the country that do not have a private nonprofit agency offering vision rehabilitation, an academic ophthalmology program that provides comprehensive services, including a low vision exam, assis­tive technologies, and rehabilitation training, can “allow our patients with vision loss and those from the larger community to continue living fully,” said Dr. Mogk, adding that patients are used to coming to academic centers for specialty services.

Starting a program. “Medicare reimbursement, income from devices, and a little support from the depart­ment make services economically viable, and the public relations value from grateful patients is inestimable, and creating a service is easy,” Dr. Mogk said. It requires a low vision MD or OD and one or more specially trained oc­cupational therapists, who are already part of the medical system.

In addition, she said, these programs engender philanthropic grants and expose residents to vision rehab during training. She added that if residents lat­er take faculty positions at an academic ophthalmology center that doesn’t have a vision rehab program, they can help launch one—even if they don’t end up leading it.

“When we started our program at Henry Ford 25 years ago, we had an occupational therapist, a technician, a patient coordinator, and me,” said Dr. Mogk. “Today, our program has grown to a staff of 17, including eight occu­pational therapists, two optometrists, and me—and 70% of our patients come from community ophthalmologists not affiliated with our health system.” Inspired by Dr. Mogk’s experience, Dr. Shepherd launched a similar program in Nebraska, which doubled its staff in 10 years and developed satellite clinics to expand its reach. He credits much of its success to the exceptional philan­thropy within the state.

Care for People, Not Just Eyes

Vision rehab means keeping your eye on the prize: helping low vision patients focus on what vision remains, not what is lost, so they can live a fulfilling life, said Dr. Shepherd. “We help people be realistic about their limitations but also help them reengage with their lives, minimizing the chances of depression.”

Strategize solutions, maximize function. “With vision rehab, we don’t touch the visual acuity,” said Dr. Shepherd. “We help patients take the remaining vision they have and use it more efficiently and effectively.” This involves providing strategies—whether modifying a kitchen to make it more navigable or learning new ways to read or work on a computer, he said.

Dr. Mogk gave the example of a patient who keeps bumping into fur­niture. “We might look at their living room and see that it contains a brown rug, brown couch, and brown tables. There’s no contrast, so of course they’re bumping into furniture. It’s not rocket science, but these are things people don’t think about.” She also explained how important it is to educate fam­ily members. For example, a patient with a central scotoma might be able to spot a speck on the floor but not recognize a loved one when looking directly at them—that can cause a bit of skepticism until the challenge is fully explained.

Personalize the approach. Dr. Mogk’s team doesn’t dispense any devices until the occupational therapist has spent time with the patient and understands which solutions work well for the tasks they want to accomplish. “People have different goals,” she said. “Some want to read The New York Times. Some want to read novels. And some only want to read the mail and their bills. People also have different physical attributes. For example, a hand magnifier might be useless to a patient with a hand tremor.”

Listen to patients. Patients may gain benefits from a range of devices, such as downloadable phone apps, telescopic or prism spectacles, or computer mag­nification software, as well as nonopti­cal visual aids such as black-and-white cutting boards or bump dots to label appliance dials. But Dr. Kaleem also emphasizes that she’s learned a lot from simply listening to patients and seeing what works well for them. For example, patients have recommended devic­es such as the Anywear Neck Light (EZRED Tools), which is an affordable assistive device that patients can use for reading or navigating in dark places.

“The patient will tell you about their challenges living with vision loss, but only if you ask them and then listen to their answer,” added Dr. Shepherd. “This is the key to identifying the pa­tient who will benefit from a referral.”

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1 Shepherd JD. Role of the ophthalmologist in low vision rehabilitation. In: Albert D, Miller J, Azar D, Young LH, eds. Albert and Jakobiec’s Principles and Practice of Ophthalmology. 4th ed. Springer, Cham;2020:5011-5017.

2 Morse AR. Ophthalmology. 2018;125(7):959- 961.

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Dr. Kaleem is associate professor of ophthalmol­ogy at Johns Hopkins Medical Institute in Balti­more, Md. Relevant financial disclosures: None.

Dr. Mogk is medical director of the Center for Vision and Neuro Rehabilitation at Henry Ford Health in Detroit, Mich. She is also chair of the Michigan Commission for Blind Persons. Rele­vant financial disclosures: None.

Dr. Shepherd is director of the Weigel William­son Center for Visual Rehabilitation at the Uni­versity of Nebraska Medical Center in Omaha, Neb. Relevant financial disclosures: None.

For full disclosures and the disclosure key, see below.