Tips on Applying for Disability Benefits for a Child with Down Syndrome

Down syndrome and mosaic Down syndrome can qualify your child medically to receive disability benefits through the Social Security Administration’s (SSA’s) Supplemental Security Income (SSI) program.

 Tip #1: Understand the SSI program

It is important to understand that medically qualifying is only part of the eligibility determination process. There are also financial considerations the SSA reviews when making a decision on your child’s eligibility for SSI. This is because SSI is a need-based program for which applicants must have very limited income and other financial resources to pay for their everyday needs.

When deciding if children qualify for SSI, the SSA looks at the financial resources of the child, including sources like child support. They also factor in a portion of the income of the child’s parents as well as other sources of financial resources the parents may have. You can learn more about the financial rules for SSI here: http://www.ssa.gov/ssi/

 Tip #2: Understand how your child can medically qualify for benefits 

The SSA has set procedures for reviewing the medical records of applicants to determine if they are medically eligible for benefits. Your child’s records will be reviewed in relation to listings in the Blue Book, which is a manual of disabling conditions and the medical evidence needed to prove disability.

For Down syndrome, the Blue Book listing appears in Section 110.06. This listing requires one of the following:

A Mother and Her Child in the World of Down Syndrome in Nepal

by Michael Rosenkrantz from The Huffington Post:
Dr. Lalita Joshi, a retired Br .Gen. of Nepal Army Medical Corps with strict principals, simple and honest is driven by a deep love for her son Ashish, born some 22 years ago with Down Syndrome. She married Dr. Prabhu Joshi, an anesthesiologist, in 1980 and their first son, Amit, was born in 1981. Amit completed his MBA in the US and is now working for an investment company in Nepal. In 1989 Lalita became an OB-GYN.
In 1991 their second son Ashish was born. For 14 days Ashish was in NICU before he was able to come home. He possessed some facial features of a child with Down Syndrome and although the family suspected something, there were no real issues. When Ashish was three the family went to Madras for an elder sister's renal transplant. At that time Ashish was tested and it was confirmed that he had Down Syndrome. Fortunately for the Joshi's, Ashish has been accepted by all family members who refer to him as Lakshan Kobacha or lucky child.
The most common type of Down Syndrome is called Trisomy 21, which accounts for about 95% of people affected. Ashish has a less common type, known as Mosaic, which is a milder form of Down Syndrome enabling him to function at a much higher level.

How mosaic Down syndrome can be missed

by Shannon Blaeske from Lifes Litte Surprises:

Parents are crazy. Especially moms. And especially new moms. Every sniffle raises alarm, every odd movement or out of routine behavior causes suspicion. So it comes to no surprise to me that doctors have quick answers to all these tiny concerns. I am sure the pediatrician night hot lines ring off the hook all night long from worried moms over-reading into the common cold. But what happens when mothers intuition is right? What happens when the rare, not likely cause of the sniffle is the cause? What happens when doctors dismiss symptoms because they are unaware of what they may be indicating?

For two families, just that happened. Both Holly and Sarah knew certain things were not right with their daughters. Numerous small health concerns kept rising up, and each time, they were dismissed with the most common answers.  For Holly, the answers she was given for the cause her daughters constipation and projectile vomiting did not sit right. And for Sarah when her daughter ended up having a very rare congenital subglottic stenosis, she too questioned if something else could have caused it. But who were they to question doctors? They trusted their opinions. They trusted that they knew best.