A strategy to win SSI for someone with Williams Syndrome

I am currently working on a case for an individual with Williams Syndrome.  According to the Williams Syndrome Association, Williams Syndrome is  “a genetic condition that is present at birth and can affect anyone.  It is characterized by medical problems, including cardiovascular disease, developmental delays, and learning disabilities.  These occur side by side with striking verbal abilities, highly social personalities and an affinity for music.”
I have not come across this disease until now and indeed it appears pretty rare.  According to the Association, “Williams Syndrome affects 1 in 10,000 people worldwide – an estimated 20,000 to 30,000 people in the United States. ”
Williams Syndrome is not a “listing” impairment.  This means that you cannot obtain SSI automatically  if you have it.  Indeed, it appears to be a struggle to win it.  I was reviewing the Williams Association Facebook page and in 2011, there was comment after comment about folks being denied SSI.  It appeared then that the Social Security Administration did not understand the Syndrome and given the denial my client received, they still do not.
My strategy will be to show that while my client does not meet a listing (because there is none), her condition is as severe as an analogous  impairment that appears in the Listings.   In other words, I am going to try to show that she medically equals a Listing.  There are several listings that may be applicable.  The first is Listing 12.05D, Intellectual Disability.   One can meet this listing by showing:
D. A valid verbal, performance, or full scale IQ of 60 through 70, resulting in at least two of the following:
1. Marked restriction of activities of daily living; or
2. Marked difficulties in maintaining social functioning; or
3. Marked difficulties in maintaining concentration, persistence, or pace; or
4. Repeated episodes of decompensation, each of extended duration.
People with Williams Syndrome may not have the low IQ that is required by this listing but they may have some deficits in learning.  There are also likely going to be difficulties with activities of daily living such as getting dressed, bathing, eating, taking medication.  Maintaining concentration, persistence or pace is also difficult for people with Williams Syndrome.
I plan to show that my client meets this listing by an evaluation from a psychologist and  IQ testing.  I also plan to obtain school records to show her developmental delays.  I will have Declarations from family members who can talk about her activities of daily living.  Finally, I will obtain a Declaration from my client’s employer (a supportive work environment) which can address her difficulties with concentration, persistence and pace.
Another listing applicable in my case is 11.07 Cerebral palsy.   In order to meet this listing, one has to show the existence of cerebral palsy with:
A. IQ of 70 or less; or
B. Abnormal behavior patterns, such as destructiveness or emotional instability; or
C. Significant interference in communication due to speech, hearing, or visual defect; or
D. Disorganization of motor function as described in 11.04B.
Again, the goal is to make Williams Syndrome equivalent to cerebral palsy using this Listing.   In my particular case, I plan to use IQ testing to show the IQ.  I will have a psychologist address her behavioral patterns.  People with Williams Syndrome have difficulty with fine motor functions and I plan to show this through Declarations and medical records.
Although not applicable in my case, you should also review the cardiac listings as many people with Williams Syndrome have cardiac difficulties.
I think it is possible to win a case for someone who has Williams Syndrome.  It requires more explanation perhaps because individuals with it are communicative and social.  A Social Security adjudicator may not understand what the problem is.  If you have a similar case, I would recommend obtaining a psychological evaluation, IQ testing, school records and Declarations from family members and employers.  Do not rely on Social Security’s psychological exam; obtain your own.   And, do not assume that simply being diagnosed with Williams Syndrome will be sufficient.  Do the extra work and I believe you will prevail.