Social Security Benefits (SSI) are not just for the elderly and physically impaired. Many children with autism qualify for these benefits. Use this guide to see if your child could benefit from SSI. We'll walk you through the eligibility requirements and how to navigate the system.
The CDC states that 1 in every 44 children has an autism diagnosis. Yet, estimates show that up to 80% of eligible children are missing out because they don't know these benefits exist.
The SSI system can be complex. Many parents have stated that fighting for the resources that their child needs can feel like a full-time job. That's why we created this guide. At Unlocking Abilities, we're committed to making treatment and resources accessible to everyone.
In this article, we will help you navigate the eligibility requirements, provide tips for filling out the application, and offer guidance on application denials.
Key Terms & Abbreviations
SSA (Social Security Administration) is a government administration that handles social security and other disability programs.
SSI (Social Security Income) is a program the SSA runs that provides financial assistance to individuals and families in need. They offer a monthly stipend that can assist with daily living expenses such as housing, utilities, food, and medical expenses. You do not need to have worked to get this assistance.
SSDI (Social Security Disability Insurance) gives monthly payments to people with disabilities who qualify because they used to work. Most children with ASD are not eligible for this program, but it is easily confused with SSI.
What are the eligibility requirements for kids with ASD?
To determine if an impairment or disability is eligible for benefits, the SSA refers to the criteria outlined in their "Blue Book". Blue Book can be a dense read, so we've simplified the criteria specific to Autism Spectrum Diagnosis. Click the link next to each term to open the exact code of blue book outlining that qualifier, definitions, and examples.
To be eligible for SSI, children between 3 to 18 diagnosed with autism (code 112.00B8) must meet the following criteria:
Deficits in verbal communication
Deficits in non-verbal communication
Deficits in social interactions
Significantly restricted, repetitive patterns of behavior, interests, or activities
The child must also have either an extreme limitation of one of the following areas or a significant limitation of two of the following areas:
Parents will need to provide medical documentation such as lab results, diagnoses, and test results that proves their child meets the eligibility criteria above. You can find more information on that, here.
What is the difference between a marked limitation and a significant limitation?
The SSA defines Marked Limitations as "more than moderate" but "less than extreme". An Extreme Limitation is the most severe rating provided. However, it does not mean that the individual is unable to function at all.
The SSA looks at the child's standardized testing scores, if testing has been completed. The test score results must be consistent with the child's behavior in day to day life. For example, if a child with ASD is marked as having the comprehension level of a 5 year old but has successfully obtained a driver's license, their day to day living is not consistent with their test results.
If the child is under 3 and has not had standardized testing completed, the SSA will look at the child's developmental age (the age they are able to perform/function at) in comparison with their chronological age (their age per their birthdate).
Area of measurement
Marked Limitations (416.926a(e))
"more than moderate" but "less than extreme."
"more than marked." It's the most severe rating the SSA gives, but it does not mean a child cannot function.
Standardized Test Score Results
at least 2, but under three standard deviations below the mean
three standard deviations below the mean
Day to Day Functioning
seriously limited due to impairment limiting one activity or cumulative effects of limits across several activities
very seriously limited due to impairment limiting one activity or cumulative effects of limits across several activities
A child's ability to initiate, sustain, or complete activities at an age-appropriate level
Very serious impact
Children Under 3 with no Standardized Testing
Functioning at more than one-half but not more than two-thirds of their chronological age**
Functioning at a level that is one-half or less of their chronological age**
**Not a huge fan of math? No problem! To determine one half of their chronological age, take their age in months (i.e. 25 months) and multiply it by 0.5. For example, 25 months X 0.5 = 12.5 months. To determine two thirds of their chronological age, take their age in months (i.e. 25 months) and multiply it by 0.66. For example, 25 months x 0.66 = 16.5 months
What are the financial eligibility requirements?
To receive SSI for your child with an ASD diagnosis, your family must have limited income and resources. To determine finances, the SSA breaks down income into three categories: earned income, unearned income, and resources. Earned income comes from an employer or self-employment. Unearned income is from pensions, gifts, or other federal or state-provided benefits. Finally, resources are financial resources you already own, such as stocks, bank accounts, cash, and bonds.
The SSA has provided this financial resource to help determine eligibility. In short, the guidelines for 2023 are as follows:
Single-parent homes: make less than $1,913 per month before taxes in earned income, less than $943 per month in unearned income, and less than $2,000 in total resources.
Two-parent homes: make less than $2,827 per month before taxes in earned income, less than $1,391 per month in unearned income, and less than $3,000 in total resources.
Are you unsure if your income qualifies? Apply anyway. Many exclusions could reduce the amount of "countable" income for your family.
How much could we receive?
Every case is considered on an individual basis. As of 2023, the maximum benefit for an individual is $914 per month. SSA will apply a formula to determine how much to deduct once the parent's income is considered.
Are there any drawbacks to SSI?
Application Denials: Many applications are denied on their first submission due to not providing enough information about your child's condition. Don't let this discourage you! Start the application early and take your time filling it out. It's better to be accurate in your first submission than to appeal multiple times.
Time Frame: The process can be extensive and very detailed. Many people recommend utilizing a lawyer throughout the application process to ensure your case prevents dismissal due to filing errors or needing to provide more of the right kind of information.
Specificity of qualifications: SSI does have strict qualifying criteria. Many applicants are denied due to a lack of severity in their disability or because the families' income and resources exceed the program's thresholds.
Many parents who file highly recommend partnering with a lawyer during the initial application process to save time and money.
How could I afford a lawyer's assistance for SSI?
Social Security limits your attorney's fees to no more than 25% of your backpay and is capped at $7,200. However, the average disability attorney fee is about $3,750. In most cases, once SSA grants your benefits claim, they will withhold 25% of the past-due benefits and pay your lawyer directly from that sum.
If you'd like to pursue working with a lawyer to file your claim, Prairie State Legal Services offers free and discounted legal services for families with financial needs. They have many offices across the state, including in Joliet, Ottawa, and Kankakee. Their service area includes but is not limited to Will, Grundy, Kendall, Kane, Lasalle, and DuPage counties. You can learn more about their SSI services here: https://pslegal.org/Health
How do I get started?
Head on over to the SSA's very user-friendly SSI for children page. It will walk you through the different application methods (phone or online).
Use the worksheet found in the Child Disability Starter Kit to gather the information you need
Submit the Child Disability Report
In 3 - 5 business days, you'll receive a phone call to review the completed Child Disability Report, discuss the determination of your income & resources, and start the SSI application process.
You've got this!
Accessing the tools your child needs to thrive shouldn't feel like a full time job. But, unfortunately, sometimes it is. Just know that there are resources out there to help you, to guide you to these services and through the processes. We see you working hard over there to do everything you can to help your kiddo thrive and we're here to help you however we can. Hop over to our Facebook Page for daily tips and resources, or drop us a line on our contact form for help more specific to your needs.