For Social Security disability claims, the burden of proof in establishing a severe medically determinable impairment (MDI) is on the claimant. The existence of an MDI must be supported by objective medical evidence. Some claimants suffer from symptoms of genetic disorders which are not easily diagnosed. New and existing medical technologies can contribute a measure of objectivity to the diagnosis of rare diseases such as a genetic disorder.
In many cases, health insurance will cover the cost of genetic testing when it is recommended by your doctor. You may also purchase genetic testing on your own. However, loss of health insurance and income from not working may preclude both options, as the cost of genetic testing can range from under $100 to more than $2000, depending on the nature and complexity of the test.1
Social Security Administration (SSA) will consider genetic reports from any source, including certified genetic counselors and even “direct-to-consumer” (DTC) test results, but genetic test results alone are not sufficient to make a finding of disability.2 The MDI must also be established by an approved medical source (AMS), such as a licensed physician, advanced practical nurse, or physician assistant.3
SSA will not pay for genetic testing, though test results may provide valuable information when they appear as part of the larger body of medical records. Although genetic testing could provide valuable evidence, it is not necessary to establish the existence of an MDI. Before purchasing a genetic test on your own, a claimant should weigh the medical benefit and value of such potential evidence against the actual cost. Your medical provider can advise you on the medical necessity of such testing, and a disability lawyer can assist you in evaluating the legal impact of the test on your disability claim.
1 https://medlineplus.gov/genetics/understanding/testing/insurancecoverage/
2 SSA makes a sole exception for non-mosaic Down syndrome (See SSR 16-4p).
3 20 CFR § 404.1502
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