October 2018

As the president of the Orange County Asperger’s Support Group, I often hear of differing concerns from parents. One common issue is how to get their child on Supplemental Security Income (SSI). An SSI benefit, can help your child financially with a monthly stipend. It also can enable them to receive Med-Cal.  For a child with ASD, SSI is part of your child’s financial safety net. Now I am not an expert, but am happy to share my personal experience.

To Qualify For SSI You Must Have Less than $2000 and Have an Approved Disability

SSI is a means tested benefit. This means that the government requires that the individual have less than $2,000 of financial assets. Note that personal possessions — a car, home, or furniture — are not counted as assets. Some families are able to get on SSI, before their child turns 18. But in those cases, the parents must meet the strict financial guidelines as well as provide proof their child’s disability.

When Josh turned 18, he became an adult and was eligible to apply for SSI. Prior to applying, we had to do a little work. Josh had some money from his Bar Mitzvah and other family gifts. With the help of an attorney, we set up self-funded special needs trust. By moving his money into the trust, Josh was able to meet the financial requirements for SSI.

We Hired an Advocate to Help Over See the Process

We also hired an advisor to help with the process. We worked with Jim Huyck. The first step was to fill out the application for SSI. This was quite an extensive form and required many details from Josh’s medical history. In preparing the application, we also reached out to the original psychologist who diagnosed Josh when he was three years old and to Josh’s current therapist. We had Josh revisit the diagnosing therapist who wrote up a report. We also had his current therapist write a report. It was important that Social Security understand Josh’s disability and his limitations.

There is also financial information required related to Josh’s living expenses. Josh lived at home, and so we needed to pull together all our families living expenses including utilities, mortgage payments, insurance, groceries, etc. Josh needed to pay his fair share. If Josh was unable to pay his fair share, then he would lose a portion of his benefit.

Social Security also needs copies of all the banking accounts. Part of their process is to thoroughly review the funds Josh had available. They even counted savings bonds.

We then submitted the application. It took around nine months. There were occasional letters asking for additional information. At a certain point, Social Security sent a correspondence indicating that Josh would need to meet with one of their doctor’s to be evaluated. This doctor was located in a small clinic in Long Beach. I was nervous, because Josh is fairly high functioning, but the doctor told me that we had nothing to fear.

In the end Josh was approved. I was made his representative payee, which meant I was responsible for managing Josh’s money. The first payment was a lump sum that included back-pay dating back to the date that we applied for the benefit. This amount of money meant that Josh had more than $2000 in the bank. We were given a time frame to spend down the money, before Josh would be penalized for having this much cash on hand.

Josh was on SSI from the time he as 19 till he was 26 years old. I often hear that families get denied. My advice is get professional assistance. Don’t rush. Take your time and do this correctly.

Living with SSI

In my next blog, I will explain living with SSI. There are lots of reporting rules that can impact your child’s income. There are also strategies for how to manage the funds that I am happy to share.