Can I Get Disability Based on Retinitis Pigmentosa Damage?

Retinitis pigmentosa (RP) is the leading cause of visual disability and blindness among people younger than 60 (see Retinitis Pigmentosa: Burden of Disease and Current Unmet Needs).

Retinitis pigmentosa is a degenerative condition with symptoms that can begin subtly and progress over time. The symptoms of RP can include any or all of the following:

• difficulty seeing in low light (night blindness)
• difficulty adjusting to changes in light level
• reduced peripheral vision (or central vision)
• tunnel vision
• color blindness (dyschromatopsia)
• difficulty seeing details or reading (loss of visual acuity), and
• total blindness.

If your vision is significantly impaired and you can no longer work because of retinitis pigmentosa, you might qualify for Social Security disability insurance (SSDI) or Supplemental Security Income (SSI) disability benefits. Here's what you need to know about qualifying for disability benefits if you can no longer work because of damage from retinitis pigmentosa.

What Is Retinitis Pigmentosa?

Retinitis pigmentosa is a progressive genetic disorder of the eye that affects the retina's rods and cones, or retinal epithelium. The majority of people with RP lose vision over time.

The first symptoms of RP (usually night blindness) generally start between the early teens and age 30, but sometimes not until after age 50. RP affects both men and women, but men are usually affected more severely than women. Currently, there's no cure or treatment for retinitis pigmentosa.

Most RP sufferers don't lose all their vision but are classified as legally blind by age 40 (meaning they have vision 20/200 or worse in the better eye or a visual field of 20 degrees or less in the better eye). But a small percentage become totally blind.

Does Retinitis Pigmentosa Qualify for Social Security Disability?

The Social Security Administration doesn't award disability benefits for retinitis pigmentosa itself. But RP can severely affect your peripheral vision and central vision, and Social Security will grant disability benefits if RP has caused your vision to erode so much that you can't work effectively.

You might be able to meet a listing for poor vision in Social Security's Blue Book (listings 2.02, 2.03, or 2.04) if your vision has deteriorated enough. Learn more about meeting the listings for peripheral and central vision loss.

If you don't meet a listing, Social Security will assess your residual functional capacity (RFC) to see if there's any work you can safely do. Your RFC is an evaluation of your limitations and what you can still do. An RFC for vision loss due to retinitis pigmentosa might include any or all of the following restrictions:

• no working in low light conditions or at night
• no driving or operating heavy machinery, and
• no climbing ladders or scaffolding.

Social Security will compare the restrictions in your RFC with the duties required of your past work to see if you could return to those types of jobs. If, for example, in your last job, you drove a forklift, your RFC restrictions would indicate that you can't do that job anymore.

If you can't do your past work, Social Security will then determine if any other jobs exist that you can do with your current RFC. If you're younger than 50, your RFC needs to show you can't do even the easiest sit-down jobs for you to get disability. But if you're older than 50, you could get disability just by showing you can't do your past work (using a set of rules called the medical-vocational grid).

If Social Security finds you can't do any type of work, you'll qualify for a medical-vocational allowance and will approve your disability benefits.

Applying for Disability for Retinitis Pigmentosa Damage

When you're ready to apply for disability benefits for your retinitis pigmentosa, you have several options. You can choose the method that works best for you:

• apply online
• apply by phone at 800-772-1213 (TTY 800-325-0778), or
• visit your local Social Security office to apply in person.

You'll need to provide your Social Security number (SSN) and that of your spouse and children (if any). Social Security will also want to know about your job history (for the last 15 years) and the medical condition(s) that prevent you from working.

Don't delay filing because you don't have all the documents or information you need, as waiting to apply could reduce the amount of SSDI or SSI back pay you can get. Social Security will help you gather whatever you're missing, including your medical records.

Learn more about how to apply for Social Security disability benefits.

_{Updated July 5, 2023}