Inherited retinal dystrophies (IRDs), a group of genetic diseases of the retina, slowly cause vision loss over time. How much sight you lose, and how quickly that happens, depends on the type of IRD you have. The good news is that low vision rehabilitation can help.
Low vision rehabilitation is the standard care for any kind of vision loss that can’t be helped with glasses. Think of it as physical therapy for your eyes. It teaches you how to make the best use of the sight you have so you can stay as independent as possible.
How Low Vision Rehabilitation Can Help You
When you start to lose your sight, it’s normal to feel sad or angry about it. Vision loss changes your life. It can take away some of your independence and make it hard to enjoy your favorite hobbies or complete responsibilities. You’re also more likely to fall and have other accidents that could hurt you.
But studies show that people who do low vision rehab are less likely to have accidents, which helps keep you independent. The research says they’re happier, too.
What to Expect From Low Vision Rehabilitation
First, you’ll get a full checkup with a specialist. They’ll want to understand how much vision you’ve lost and how it’s affected by your disease. For example, do you have blind spots? Do you have blurred vision? They’ll also want to know your goals. What activities are most important to you that you want to make sure you can keep doing? Is it cooking? Going to the movies?
The specialist will come up with a plan for you that may include:
Methods you can use to make the most of the eyesight you have. For example, in “eccentric viewing,” you look around your blind spot to see objects with your peripheral vision.
New ways to do daily tasks. This includes writing, cooking, and grocery shopping.
Mobility training. This teaches you how to get around safely with your current level of vision.
Changes you can make around your house to help keep you independent. For example, you might make new labels for medicines and spices that are easier to see.
Prescriptions for assistive devices. These include specialized magnifying glasses and electronic magnifying systems.
The specialist might also visit your home so they can tailor a plan just for you.
Besides specific strategies directly aimed at helping you see better, your rehab program might also include services for the emotional side of vision loss. This could be individual counseling or a support group with other people in the same boat as you.
Once you and your health care provider come up with a plan, you’ll schedule the sessions. You might have appointments a couple of times a week for about 6 weeks. You’ll probably see different therapists or specialists at these visits. It usually takes a team of professionals, each one with different expertise, to provide all the training and services included in low vision rehab.
Who Pays for Low Vision Rehabilitation?
You may qualify for state programs that offer free rehabilitation, depending on the amount of vision you’ve lost. You’ll need a referral from your doctor, along with records and test results, to prove you’ve lost a certain amount of eyesight that can’t be helped by glasses or contact lenses.
If you have Medicare, it may cover rehab sessions but not necessarily the devices your specialist prescribes, which can be expensive. If you don’t, it’s good to know that Medicare isn’t only for people who are 65 and older. Depending on how bad your vision loss is, it could be a disability that qualifies you for coverage.
It’s rare for private insurance plans to cover low vision rehab. If yours doesn’t, you can try to find one of the few who do during national open enrollment for health insurance. That’s usually from November to January every year.
The cash price of low vision rehabilitation depends on where you live. The first session could cost from $100 to $700. Weekly appointments after that can range from $75 to $165 each. You might need 12 sessions or more. The total can easily come to a few thousand dollars.
How to Get Into a Low Vision Rehabilitation Program
The first step toward low vision rehabilitation for your inherited retinal dystrophy is a conversation with the doctor who takes care of your eyes and vision. Ask whether you might benefit from and qualify for rehab. If the answer is yes, ask for a referral to a program.
Depending on who your doctor refers you to, you might need to find out whether your insurance covers the service. If you don’t have insurance coverage for rehab, search for a state-funded program that might be free for you. Try your state's vocational rehabilitation services agency. You can find them through RSA.ed.gov. You can also check in with national or state organizations that serve the blind and vision impaired, such as the American Foundation for the Blind.
If you have a choice between programs, ask if the program includes:
- A low vision evaluation by a doctor
- Prescriptions for devices
- Assistive devices that can be loaned rather than purchased
- Rehabilitation training for routine activities, like reading, writing, cooking, and shopping
- Techniques for lighting and glare control
- A home visit to assess your needs
- Mobility services
- Support groups and other psychosocial resources
Show Sources
Photo Credit: EyeEm/Getty Images
SOURCES:
University of Pittsburgh Medical Center: “Retinal Dystrophy Causes, Symptoms, and Treatments,” “Low-Vision Accommodations in Your Home.”
American Optometric Association: “Low Vision and Vision Rehabilitation
Living Well with Low Vision: “What Is Low Vision Rehabilitation?”
Lighthouse Guild: “ ‘Eccentric Viewing’ to Improve Vision.”
American Academy of Ophthalmology: “Low Vision Rehabilitation Teams and Services.”
JAMA Ophthalmology: “Medicare Coverage for Vision Assistive Equipment.”
The Blind Guide: “Medicare for People with Low Vision.”
My Vision: “Low-Vision Rehabilitation: How It Works.”
National Eye Institute: “Vision Rehabilitation Resources.”
