Care shouldn’t end with vision loss

Your number of low-vision patients is likely to increase in coming years; be prepared.

By Karen Auge, Contributing Editor

Chris Danielsen was born blind.

Initially, doctors thought surgeries could give him at least partial sight. But after several attempts failed, Mr. Danielsen says the doctor told his mother, “Well, gosh, you’ve got a blind child. Good luck with everything.”

The doctor didn’t mention to Mr. Danielsen’s frightened and confused mother that schools for blind children are located in virtually every state or that every state offers vocational rehabilitation services and a library for the blind. In addition, the National Federation of the Blind (NFB), the American Foundation for the Blind (AFB), Lighthouse International and other organizations offer braille instruction, walking canes, occupational and job training and more.

The American Foundation for the Blind’s VisionAware website provides seniors with “resources for independent living with vision loss,” including advice on continuing to work and a transportation guide.

In the last few decades, ophthalmologists have become more aware of the importance of connecting low-vision patients with resources. “We’ve started to actually get requests for information from physicians,” says Mr. Danielsen, now public relations director for the National Federation of the Blind. “And medical groups are saying, ‘Can you come and talk to us?’”

But organizations like Mr. Danielsen’s have more work to do. So advocacy groups, medical schools, therapists and even colleagues are directing concerted efforts to educate all ophthalmologists about the variety, benefit and necessity of taking the time to make referrals to therapies and services.

More tools than ever

Hundreds of low-vision devices and therapies are available now, many of which hadn’t been conceived of when Mr. Danielsen was a child, ranging from the strikingly simple and nearly free to the incomprehensibly complex and enormously expensive.

Tools depend on the patient …

Devices include screen readers and software programs that allow blind or visually impaired users to read the text that is displayed on the computer screen with a speech synthesizer or braille display. Those range in price from free to around $1,200, depending on the functions it provides.

Also, Apple offers a VoiceOver function that allows users to interact with its devices even if they can’t see the screen. In addition, AFB’s Vision Connect app includes the ability to search for local services for the vision impaired. Other devices scan and read back the contents of bills and other mail. “Reading is one of the top things people come to us for,” says Pris Rogers, director of the American Foundation for the Blind’s Vision Aware program. “It’s not just reading for pleasure. Reading is your life,” she says, whether it is prescriptions, directions or contracts.

Devices are not one-size fits all, says Lilas Mogk MD, director of the Center for Vision Rehabilitation and Research, Henry Ford Health System. For example, she explains, a $600 telescope may be perfect for a student who needs to see what a teacher writes on a board in front of the classroom, but may be of absolutely no use to an elderly patient who needs help reading.

The American Academy of Ophthalmology’s SmartSight offers resources for physicians, as well as a handout for newly diagnosed patients.

When Joseph L. Fontenot, MD, Academy chairman was losing his sight, specialized, high-powered reading glasses were invaluable in helping him continue his cardiology practice for several years.

But, notes Dr. Mogk, for someone who doesn’t want to give up gourmet cooking, high-powered reading glasses could prove disastrous “when you go home and discover you have to hold up the cookbook and it gets pretty heavy.” For that kind of use, a larger, stationary magnifier is preferable than one that has to be held by hand.

Cosmetic changes to the patient’s home are another possibility you can address. Simply painting rooms, doors and appliances in brightly contrasting colors can help those with low vision navigate, says Ms. Rogers. Sticky dots for appliances make them more easily identifiable. You could even paint the pathways in your office to accommodate these patients.

And, for those who need extensive rehabilitation to master basic life skills, Ms. Rogers says the AFB’s Center on Vision Loss in Dallas includes reproductions of an entire home’s worth of rooms and every room is packed with furniture, appliances and every conceivable household item.

Helping make patients aware of such options “is absolutely part of the scope of the practice of a physician,” says Dr. John Loewenstein, MD, vice chair for Education in Ophthalmology at Harvard Medical School.

Get involved

On its website, the NFB is downright evangelical in encouraging physicians to connect patients losing sight with agencies that can help them. “This could be one of your finest professional accomplishments, to initiate the process by which a newly blind patient will be able to live the life he or she wants,” the website informs physicians. “You can help your patient realize that blindness is not a tragedy, but a purely physical nuisance.”

As director of the ophthalmic residency program at Harvard University’s School of Medicine for a dozen years, Dr. Loewenstein familiarized his residents with resources available to blind and low-vision people by visiting the Perkins School of the Blind in Watertown, Mass. The school provides education and advocacy for blind and deafblind children. The goal is to create a generation of ophthalmologists for whom referrals to services is deeply ingrained.

There is a life after blindness, though it may be hard for patients to imagine after a devastating diagnosis, Mr. Danielsen says. That’s why it is important for physicians to immediately launch patients on the path to recovery, he says.

Through its Vision Rehabilitation Committee, the AAO also encourages its members to make those referrals, says Dr. Fontenot.

Their efforts have resulted in limited success, says Dr. Fontenot, who became an activist for low-vision referrals after losing his own sight. “They’ve tried. For effort, I’d give them a B+. But in accomplishment, a C-. And that’s mostly because it’s difficult to get the word out to practicing ophthalmologists.”

Time is a significant part of the issue, says Dr. Fontenot. “Ophthalmologists are busy, so they have to be very efficient.”

Dr. Fontenot recommends incorporating referrals into the routine of office visits, whether from the physician, occupational therapist, or others on the physician’s staff. He encourages ophthalmologists to incorporate referral reminders on exam checklists so that those referrals will become routine. Ms. Rogers says the AFB supplies mock prescription pads designed to encourage ophthalmologists to write referrals.

The Academy assembled a one-stop-shopping list of resources that physicians can quickly pass along to blind and low-vision patients (www.aao.org/smart-sight-low-vision). The SmartSight handout covers resources that serve low-vision patients and the blind, computer adaptations and more.

Physicians may also be reluctant to get involved with connecting patients to low-vision services for other deep-seated reasons. They see their job as fixing whatever condition is causing a patient to lose sight, so helping that patient live without sight can smack of giving up. “Some [physicians] see it as an admission of failure,” Dr. Lowenstein says. “We’ve got to overcome that.”

The start of a sea change

Beginning in the late 1990s, Medicare changed its policy and, slowly, began covering occupational therapy for low-vision patients. “In 1997, we wrote a policy that allowed occupational therapy to work with low-vision people,” says Dr. Mogk.

By 2002, even the Centers for Medicare and Medicaid Services recognized the need and announced it would cover low-vision therapy, including for those who were not completely blind, as had been required in the past.

But for the most part, while therapy is covered by Medicare and other insurance, Dr. Mogk says, devices themselves are not.

That’s one reason Dr. Mogk says physicians should hardly be expected to hand out product catalogs or recommend specific devices to patients. Another reason is that often neither the doctor, nor even the patient, knows which device would work best. That often becomes apparent only with the help of an occupational therapist, she says.

Mr. Danielsen and Ms. Rogers are convinced that therapy is essential for patients, and that they need a physician’s help to find it. People don’t easily find their way to vision rehabilitation services, on their own, even with the Internet, Mr. Danielsen says. “It’s not unusual for us to get calls from people saying, ‘I’ve been sitting in the house and crying for the past two months.’”

Get them connected

Depression is a major concern among those who’ve just learned they’re likely to lose vision, Mr. Danielsen says, and feeling isolated only exacerbates the situation. Patients losing their vision may not know anyone else dealing with vision loss or living with blindness. “Simply connecting them with just one of the estimated 1.3 million blind people in the United States is a significant first step,” Mr. Danielsen says. Generally, he said, that entails directing them to support groups, or even online communities, where they can share experiences and challenges with other people with low vision.

Dr. Lowenstein knows physicians who referred patients for low-vision services only to have that patient come back disappointed or discouraged because the rehabilitation or product didn’t work for them. Those physicians become reluctant to make future referrals.

“You can’t predict who’s going to benefit,” he says. “There is a certain success rate and it’s not 100%. But if you don’t refer, the success rate is zero.”

While physicians lack the requisite training to prescribe specific devices, occupational therapists are trained to do so, says Dr. Mogk. The most efficient course for ophthalmologists may be simply to refer patients to organizations like the NFB, AFB or state-run agencies for the blind, and trust those groups to get the patient on the path to services and the particular devices that are best suited to their individual needs, she says.

Conclusion

Dr. Mogk says progress in convincing ophthalmologists to refer patients to physical therapists comes, even if it’s sometimes slow. Dr. Mogk compares the efforts to encourage physicians to direct patients to services to similar efforts for stroke patients. “Thirty years ago, occupational therapists would follow neurologists around the hospital saying, ‘please refer to me.’” Now, Dr. Mogk says, occupational therapy is standard practice for stroke patients.

The same sea-change in low-vision services might come much faster, Dr. Mogk says. “This current population of seniors is fairly stoic. But I imagine baby boomers will grab ophthalmologists by the lapels and say, ‘What do you mean, there’s nothing more you can do and you’ll see me in six months?’”

In the end, Mr. Danielsen says, the overriding goal is to convince patients that, as he put it, “It’s still possible to live the life you want as a blind person.” OM