Supplemental Security Income (SSI) is a Federal program funded by general tax revenues and is designed for those with disabilities acquired before the age of 22 and with little or no income for rent, food, and clothing. Applications can be done online, by making an appointment via phone, or without an appointment by going to the local Social Security office (anticipate wait) Online Application Any diagnosis under the FASD umbrella qualifies as a disability for this purpose.
When to apply: Since family and applicant's incomes are considered when applying for SSI, many families will apply about six months before the applicant's 18th birthday. It is important to note, however, that some total incomes do not hinder application. Also, it is notable that birth weight under 2 pounds 10 ounces, severe intellectual disability at 4 or older, and failure to thrive from birth to 3 years of age may be qualifying conditions. Click for detailed information.
"Veterans" of this application process suggest that you scan (to a flash drive) ALL available medical records, including:
- birth records
- pediatrician/family practice records
- interpretative data from procedures such as MRIs
- allied health (Occupational Therapy, Physical Therapy, Speech Language Therapy
- early intervention service notes
- mental health records
- psychiatrist records
- hospitalization records
- psychological and neuropsychological testing, including adaptive functioning scale
- diagnostic records
- last three IEPs
- Vocational Rehabilitation records
NEVER submit original copy records or hand in the only flash drive. In addition, since paper copies are often misplaced due to sheer volume of paperwork these offices handle, consider advisability of doing paper copies as part of the application process.
While officials at Social Security may say the breadth and depth of these records is not necessary and that the records will not be read even if submitted, FASD is an unknown diagnosis to many. This thoroughness will alleviate requests for more information.
Do not give up if denial of the claim is received, even if that denial is based on the testing that was required; if additional testing is required, you are not responsible for the cost. The denial process is outlined in this link. Benefits are retroactive to the date of the application if appeals are utilized and the outcome is successful. If the appeal process runs its course without approval, another application can be submitted with the clock ticking again at that point in terms of benefits available to the applicant if finally approved.
An attorney is not necessary to apply, but an attorney may be needed to pursue a favorable outcome if denials are received. The attorney is paid out of benefits eventually awarded; however, the amount is determined by the total dollar amount accrued until the benefits are awarded. This means the individual loses the benefits that are paid to the attorney.
Once approved, a Rep Payee account needs to be set up at your bank; this will have the names of the SSI recipient and the responsible adult.
If the recipient lives in the parental home, it is possible to charge the individual her/his share of living expenses (rent or mortgage payment, utilities, and food). This is determined by dividing the total of those expenses by the number of people living in the home. If that amount is less than the current payment to SSI recipients, the charge is possible. This is not "rent," but rather their portion of the living expenses. This payment made directly each month is easier than saving receipts for all qualifying expenses.
An annual accounting of the monies received is required. The rep payee will receive notice of the required forms to fill out.