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While this could have been for a multitude of other things I’m sure (and once I get my index page together, I’ll have additions as I think of them) for the Autism A to Z series, today S is for SSI (Supplemental Security Income) and how to get SSI benefits for your autistic child. I also want to talk about the differences between SSI and Social Security. SSI has been a huge help for us when it comes to getting things for Sweet B that aren’t otherwise covered elsewhere. I think, at some point, every parent of an autistic child should look into this.

If you're wondering what SSI is or how to obtain it, be sure to check out this post.

S is for SSI in our latest post in the Autism A to Z series and we'll talk about how to obtain SSI for your child.

What does SSI stand for and what is it?

SSI stands for Supplemental Security Income. The program is run by the Social Security Administration and is available to people with limited income and resources who are disabled, blind, or age 65 or older. Blind or disabled children may also get SSI. SSI is income based and the amount of income and assets that you have will determine how much SSI you can receive both from the federal government and your state government.

Eligibility for SSI varies from state to state, but generally speaking:

To get SSI, you must be disabled, blind, or at least 65 years old and have “limited” income and resources. But, as mentioned above- blind or disabled children can also be eligible for SSI.

In addition to the above, to get SSI, you must also:

* be a legal resident of the United States, and

* not be absent from the country for a full calendar month or more or for 30 consecutive days or more; and

* be either a U.S. citizen or national, or in one of certain categories of qualified non–citizens.

Since Sweet B is under the age of 18, I am her Representative Payee. In other words, the check is paid out to me and I manage her resources month to month. She has a dedicated bank account, as per SSI regulations, and the only money that goes into or out of this account is from SSI.

And due to the severity of her disability, I will likely remain her representative payee until the account can be transferred over to her (which will be covered later).

How To Get SSI Benefits for Your Autistic Child

Eligibility for SSI is usually determined by the income and assets of the person applying and the household. To determine if your child is eligible, please take the benefits screening test provided by  Social Security Administration.

If you are eligible, contact your local Social Security Administration office to begin the process. You will need to do an interview and provide several documents to start this process.

The Social Security Administration also provides a spotlight page on SSI for Children that goes into much further depth and detail than I could provide.

Your intake process will begin after you contact your local SSA office either through their website or by making a phone call. You’ll go through an interview where you’ll provide them with the necessary documents to proceed. Then you’ll enter a review process to determine your eligibility.

If you qualify for SSI, your first check will also include back-payments that begin from the time that your child was determined eligible.

Does autism always qualify as a disability for SSI?

This is a tricky one, for sure! I can’t speak for every state, but for us, this involved an evaluation conducted by the SSI office. This was done outside of our own evaluations though they did review the paperwork we had regarding Sweet B’s diagnosis.

Best I can say here?

Your child’s level of disability will determine whether or not they qualify for SSI.

However, if you feel that the decision was not made correctly; I would encourage you to appeal. And keep appealing. You never know when you will win your case. 

How much SSI will my autistic child qualify for?

Again, I cannot speak for every state. SSI benefits are divided between the federal government and the state government. The federal government usually kicks in the higher portion of the overall payment.

How much your child actually receives depends on your household income. 

Just remember though, for a child who is under the age of 18; income is determined by the entire household.

For an adult, or individual over the age of 18, income is determined on their personal income.

How to Use SSI for Your Child

One of the main things with SSI, is that is it must be used for your child. For example, clothing, special foods, therapies, etc. Things that aren’t normally covered by insurance and/or can’t be obtained elsewhere.

SSI will also usually qualify your child to receive Medicaid. But this is also something to discuss with your case worker.

You can save money but only if it goes into a dedicated account for your child’s future. The maximum amount that you can save is $100,000. This could then go towards creating a special needs trust.

SSI will expect for you to document your spending in some way or another. Either hold onto receipts or keep a spreadsheet for this purpose. That way, when your review comes up, you have the information in one place.

SSI will also need to be renewed every so often. For us, it’s every three years just to determine that she’s still disabled. In the past we’ve done this both over the phone and through a letter.

What is an SSI dedicated account?

This is really a lot more simple than it sounds! Simply put, this is the bank account where your child’s monthly SSI checks are deposited. As it was mentioned above, I am my daughter’s representative payee.

The account was set up by me solely for the purpose of receiving SSI money.

No other funds go into this account except for SSI money.

Can you spend money in your child’s dedicated SSI account?

Yes. That is really what it’s there for. But, you must sure that everything you are purchasing with SSI money, is for your child’s needs. 

Examples include:

  • Therapy equipment (not covered by insurance)
  • Clothing
  • Food
  • Personal items

Have you thought about obtaining SSI for your child?

SSI has been a lifesaver for our family. Here's how to obtain SSI for your autistic child.

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Digital Product Creator at Kori at Home
Kori is a late diagnosed autistic/ADHD mom. She is currently located in Albany, NY where she is raising a neurodiverse family. Her older daughter is non-speaking autistic (and also has ADHD and Anxiety) and her youngest daughter is HSP/Gifted. A blogger, podcaster, writer, product creator, and coach; Kori shares autism family life- the highs, lows, messy, and real. Kori brings her own life experiences as an autistic woman combined with her adventures in momming to bring you the day-to-day of her life at home. Kori is on a mission to empower moms of autistic children to make informed parenting decisions with confidence and conviction.

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Lisa Buie-Collard
9 years ago

What a great theme to post about. I am sure there are many out there who can use this valuble information. Thank you for taking on such an important theme/cause here on the A to Z. Lisa, co-host AtoZ 2015, @