Oct 25, 2011

Making It Tougher For Those With Down Syndrome To Qualify For Disability Benefits

     Today's Federal Register has a Notice of Proposed Rule-Making (NPRM) that would change Social Security's listings for congenital disorders. The main change is to make it far more difficult for some individuals with Down syndrome to qualify for Social Security disability benefits. The change would affect those with mosaic Down syndrome, which is the less common variety.
     This is a microcosm of what has been happening with the Listings for about 15 years or so, seemingly small changes always designed to make it more difficult to qualify for benefits. The world does not notice because each change seems small and technical. Who is familiar with the differences between mosaic and non-mosaic Down Syndrome?
     Where does the impetus for this come from? Is it Social Security's medical staff? Is it Social Security's upper management? Is it the Office of Management and Budget (OMB)? My bet is on OMB but I just do not know.
     Does it not seem a bit surprising that they are trying to make it more difficult for people with Down Syndrome to be found disabled?


Anonymous said...

Mosaic Down Syndrome is only in about 2% of those with down syndrome. In Down Syndrome, all cells have 3 copies of the 21 chromosome, in Mosaic only some cells have 3 copies. The listing already separates non-mosaic and mosaic. Mosaic is a case by case basis and would be evaluated differently, using listing for the most affected body system(s). Does not sound like this change will be much different. Those with Non-Mosaic Down Syndrome are considered disabled from birth.

Anonymous said...

Folks with mosaic (fill in name of many genetic or congenital syndromes) have a wide variety of impact, as opposed to those with the non-mosaic version of the syndrome. For example, is Chris Burke, (Corky from Life Goes on) disabled? Some folks would argue no. He acts, made a living as an actor. But it would be hard to argue that (and I hate to use this word, but I must) he is "normal" as his genetics are messed up to a significant degree over non-trisomy 21 "normals". There will always be folks with some genetic impairment who skew the curve and who achieve wonderful things, but those exceptions aren't the rule. But it is mean spirited thing to do, likely presented as an example of applying individual assessment (and thereby being fair) to a population marked since birth with genetic differences.

Anonymous said...

In the case of Corky, he would be considered disabled from birth, but he would still be held to the steps of sequential evaluation, the first step is "engaging in SGA", even though he has Down Syndrome and is considered disabled from birth - he would be denied for SGA just like anyone else. It is not mean spirited, it is just the rules - again the listing for "Impairments that affect multiple body systems" has always separated Non-mosaic vs Mosaic.