What is Down Syndrome?
Down Syndrome is characterized by a complex of physical characteristics, delayed physical development, and mental retardation. Down Syndrome exists in non-mosaic and mosaic forms. Social Security considers people who have confirmed non-mosaic Down Syndrome as disabled from birth. Down Syndrome is a condition in which there are three copies of chromosome 21 within the cells of the body instead of the normal two copies per cell. The three copies may be separate (trisomy), or one chromosome 21 copy may be attached to a different chromosome (translocation). This extra chromosomal material changes the orderly development of the body and brain.
What is non-mosaic Down Syndrome?
Non-mosaic Down Syndrome occurs when you have an extra copy of chromosome 21 in every cell of your body. At least 98 percent of people with Down Syndrome have this form (which includes either trisomy or translocation type chromosomal abnormalities). Virtually all cases of non-mosaic Down Syndrome affect the mental, neurological, and skeletal systems, and they are often accompanied by heart disease, impaired vision, hearing problems, and other conditions.
What is mosaic Down Syndrome?
Mosaic Down Syndrome occurs when you have some cells with the normal two copies of chromosome 21 and some cells with an extra copy of chromosome 21. When this occurs, there is a mixture of two types of cells. Mosaic Down Syndrome occurs in only 1-2 percent of people with Down Syndrome, and there is a wide range in the level of severity of the impairment. Mosaic Down Syndrome can be profound and disabling, but it can also be so slight as to be undetected clinically.
What documentation is required to establish that you have non-mosaic Down Syndrome?
- General: Social Security needs documentation from an acceptable medical source to establish that you have a medically determinable impairment.
- Definitive chromosomal analysis: Social Security needs to find that you have non-mosaic Down Syndrome based on a report from an acceptable medical source that indicates that you have the impairment. This includes the laboratory report of definitive chromosomal analysis showing that you have the impairment.
- If you do not have the results of definitive chromosomal analysis? Social Security will then need evidence from an acceptable medical source that includes a clinical description of the diagnostic physical features of Down Syndrome. The report must be consistent with other evidence in your case record; for example, evidence showing your limitations in adaptive functioning or signs of a mental disorder that can be associated with non-mosaic Down Syndrome, your educational history, or the results of psychological testing.
Common Characteristics for Down Syndrome
- Muscle hypotonia, low muscle tone
- Flat facial profile, a somewhat depressed nasal bridge and a small nose
- Oblique palpebral fissures, an upward slant to the eyes
- Dysplastic ear, an abnormal shape of the ear
- A single deep crease across the center of the palm
- Hyperflexibility, an excessive ability to extend the joints
- Dysplastic middle phalanx of 5th finger, 5th finger has 1 flexion furrow and 2 does not
- Epicanthal folds, small skin folds on the inner corner of the eyes
- Excessive space between large and second toe
- Enlargement of tongue in relationship to size of mouth
Social Security Benefits
Those affected by Down Syndrome may meet a Social Security Disability Administration Listing and thus qualify for benefits. Social Security differentiates between non-mosaic Down syndrome and mosaic Down syndrome. If you have non-mosaic down syndrome, meaning you have an extra chromosome in every cell of your body, you are considered disabled from the time of birth and can get benefits from the Social Security Administration. If you have mosaic Down syndrome, meaning some cells in your body have an extra chromosome and others are normal, then your symptoms of Down syndrome must significantly impair your ability to work. Further, the particular body parts that are affected by Down syndrome must be impaired in certain ways that meet the Social Security Criteria in order for you to receive benefits for non-mosaic Down syndrome.
Social Security Process
Social Security evaluates each person’s claim for benefits using the following five steps:
- Are you working? Generally people with non-mosaic Down syndrome are disabled from birth, so they will not be working. However, to get benefits when you have non-mosaic Down syndrome, if you are working in 2012 and your earnings average more than $1,010 a month, you generally cannot be considered disabled. If you meet this criterion or are not working, go to Step 2.
- Is your condition “severe?” Your Down syndrome must interfere with basic work-related activities for your claim to be considered. If it does not, we will find that you are not disabled. If your condition does interfere with basic work-related activities, go to Step 3.
- Is your condition found in the list of disabling conditions? For each of the major body systems, Social Security maintains a list of medical conditions that are so severe they automatically mean that you are disabled. Non-mosaic Down syndrome is on this list. Certain body functions that are impaired by non-mosaic Down syndrome may also qualify you for disabilities on this list. If your condition and/or symptoms do not meet the requirements of the Social Security list, the Social Security Office will have to decide if it is of equal severity to a medical condition that is on the list. If it is, SSA will find that you are disabled. If it is not, then go to Step 4.
- Can you do the work you did previously? If your Down syndrome is severe but not at the same or equal level of severity as a medical condition on the list, then SSA must determine if it interferes with your ability to do the work you did previously. If it does not, your claim will be denied. If it does, proceed to Step 5.
- Can you do any other type of work? If you cannot do the work you did in the past, SSA will see if you are able to adjust to other work. We consider your medical conditions and your age, education, past work experience and any transferable skills you may have. If you cannot adjust to other work, your claim will be approved. If you can adjust to other work, your claim will be denied.
To resolve your case quickly and efficiently, get representation early. Jacoby & Meyers thanks the National Down Syndrome Society for contributing text to this publication. The mission of NDSS is to benefit people with Down syndrome and their families through national leadership in education, research and advocacy. For more information call (800) 221-4602 or visit www.ndss.org.