Facts about Retinitis Pigmentosa and Filing for Disability

These selected pages answer some of the most basic, but also some of the most important, questions for individuals who are considering filing a claim for disability benefits.

Facts about the condition

1. Retinitis pigmentosa refers to a variety of eye conditions that are inherited through families. These eye conditions are progressive, so they worsen over time, often over the course of many years.

2. Symptoms of retinitis pigmentosa usually begin with night blindness, meaning vision ability is limited at night or in low light. Symptoms then progress to loss of peripheral vision, resulting in tunnel vision. Eventually those with retinitis pigmentosa become mostly blind, but usually retain at least a small amount of their vision.

3. This genetic condition is somewhat rare. In the United States, it only affects about one in every 4,000 people.

4. Retinitis pigmentosa causes damage to cells in the eyes, called the rods and cones. Typically the rods are the most affected, and since these are the cells that help with seeing in the dark, night blindness is one of the first signs. Sometimes the cones are more damaged than the rods, affecting vision in general and altering color perception.

5. The retina is the part of the eye that is affected by this condition. There are a wide variety of tests to evaluate damage of the retina, usually done during a typical eye exam. Some of these tests include color vision, pressure in the eyes, looking at the retinas after dilating the pupils, looking at the pupil reflex response to light, and visual field tests to examine side vision ability.

6. There is no treatment for retinitis pigmentosa. Wearing sunglasses to avoid ultraviolet light exposure and taking supplements of Vitamin A and other antioxidants may slow the progression of the condition, although the effectiveness of antioxidants is somewhat controversial in the medical research field.

7. Researchers are beginning to investigate the possibility of developing microchip implants to fit inside the retina as a treatment for blindness, which can be promising treatment for patients with retinitis pigmentosa.

Qualifying for disability benefits with this condition

Whether or not you qualify for disability and, as a result, are approved for disability benefits will depend entirely on the information obtained from your medical records.

This includes whatever statements and treatment notes that may have been obtained from your treating physician (a doctor who has a history of treating your condition and is, therefore, qualified to comment as to your condition and prognosis). It also includes discharge summaries from hospital stays, reports of imaging studies (such as xrays, MRIs, and CT scans) and lab panels (i.e. bloodwork) as well as reports from physical therapy.

In many disability claims, it may also include the results of a report issued by an independent physician who examines you at the request of the Social Security Administration.

Qualifying for SSD or SSI benefits will also depend on the information obtained from your vocational, or work, history if you are an adult, or academic records if you are a minor-age child. In the case of adults, your work history information will allow a disability examiner (examiners make decisions at the initial claim and reconsideration appeal levels, but not at the hearing level where a judges decides the outcome of the case) to A) classify your past work, B) determine the physical and mental demands of your past work, C) decide if you can go back to a past job, and D) whether or not you have the ability to switch to some type of other work.

The important thing to keep in mind is that the social security administration does not award benefits based on simply having a condition, but, instead, will base an approval or denial on the extent to which a condition causes functional limitations. Functional limitations can be great enough to make work activity not possible (or, for a child, make it impossible to engage in age-appropriate activities).

Why are so many disability cases lost at the disability application and reconsideration appeal levels?

There are several reasons but here are just two:

1) Social Security makes no attempt to obtain a statement from a claimant's treating physician. By contrast, at the hearing level, a claimant's disability attorney or disability representative will generally obtain and present this type of statement to a judge.

Note: it is not enough for a doctor to simply state that their patient is disabled. To satisy Social Security's requirements, the physician must list in what ways and to what extent the individual is functionally limited. For this reason, many representatives and attorneys request that the physician fill out and sign a specialized medical source statement that captures the correct information. Solid Supporting statements from physicians easily make the difference between winning or losing a disability case at the hearing level.

2) Prior to the hearing level, a claimant will not have the opportunity to explain how their condition limits them, nor will their attorney or representative have the opportunity to make a presentation based on the evidence of the case. This is because at the initial levels of the disability system, a disability examiner decides the case without meeting the claimant. The examiner may contact the claimant to gather information on activities of daily living and with regard to medical treatment or past jobs, but usually nothing more. At the hearing level, however, presenting an argument for approval based on medical evidence that has been obtained and submitted is exactly what happens.

About the Author: Tim Moore is a former Social Security Disability Examiner in North Carolina, has been interviewed by the NY Times and the LA Times on the disability system, and is an Accredited Disability Representative (ADR) in North Carolina. For assistance on a disability application or Appeal in NC, click here.

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