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Some Helpful Tips For Applying for SSI


Step 1) Start early: Gather pertinent medical and psychological info as the years go by in one place, and make appointment when child is young.


Step 2) Go to interview prepared and with a mindset that you have to prove your case. The Social Security office representative you meet with will not know anything about your case, your child’s syndrome nor abilities or inabilities. Go to the meeting with documentation as if you were going to trial. Yes, be that prepared.

Note:  In addition to bringing all documentation that provides professional medical, psychological and educators tests, opinions and diagnosis, the key part is the comprehensive letter written by the parent/ caretaker that will inform the S.S. Representative of your childs syndrome and how it affects their ability to work full time. This letter should be quite detailed and lengthy.


Step 3) Parent or Caretaker Letter should include the following:

            1st paragraph: Description of 22q syndrome and its cognitive and congenital components

            2nd paragraph: How the syndrome affects your child's ability to communicate.  (processing speed, reading others emotions, use of language)

            3rd paragraph: How the syndrome affects the child’s ability to stay on task. (can your child complete a task without assistance, in a timely manner, efficiently).

4th paragraph: Describe your child’s self help skills. Include how they live their daily life. Do they have the ability to stay organized? Direct themselves to activities? Do they take medication on their own? 

Note: You can use VINELAND self help assessment. For a sample letter requesting a school to administer the Vineland test, see this link:



              5th paragraph: Address your child’s ability to concentrate, persistence on a task and pace of completion. Relate how this would look in a working      environment.

Note: Give examples: i.e. cooking on their own, following directions, following through. Do they need assistance and constant supervision? Are they literal? Do they infer? How would your child react to a deteriorating workplace (i.e. very busy, demanding customers, multiple tasks).


6th paragraph: Activities of daily living abilities. Would they be able to pay bills on their own? Use public transportation? Cook for themselves? Laundry? Cleaning?

       7th paragraph: Social Functioning. Does your child have positive personal relationships? Do they isolate themselves from social activities? Do you need to facilitate any social gatherings for them? How does your child respond to criticism?

              8th paragraph: Address any chronic mental impairment. Anxiety, depression, etc. How does your child react to stress? Are there somatic complaints that interfere with child’s attendance?

 Note: Anxiety is so common with 22q kids. Be sure to address the following:

  • Is there general persistent anxiety?
  • Low attention due to anxiety?
  • Apprehension?
  • Persistent fear or avoidance of activity?
  • Recurrent panic attacks?
  • Deterioration of behavior due to anxiety?


Step 4)  Gather letters from professionals that know your child well. Their letter can give      statements supporting why full time employment will not be attainable for your child.  Professionals include M.D's, psychologists, psychiatrists, educators, genetic counselors, etc...

Note: Ask the professional to address the following:           

  • Stress level, low muscle tone, small motor skills, cognition problems, mental health and need for a specialized setting for your child to work.




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