Parents of children with autism are inundated with questions while trying to provide the best care for their children. Many options exist for therapies, advocation, medical assistance, physicians, and the list goes on. Knowing which options will be best for their autistic children, and if they will have the financial resources to pay for them, sometimes leaves more questions than answers.
The cost of raising a child is astronomical, add in the challenges many children with autism face, and the amount rises significantly higher. Getting help paying the ever-mounting bills can be overwhelming.
In this article I hope to make the process a bit easier, taking some of the guesswork out of one line of financial support that may be available to your family if you’re based in the USA: monthly benefits through Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI).
What exactly are SSI and SSDI?
The differences between SSI and SSDI are significant. Though someone who qualifies for SSDI, also would qualify to receive SSI, the reality is that some one who qualifies for SSI, wouldn’t necessarily qualify for SSDI.
SSI provides cash benefits for children under the age of 18 whose medical eligibility constitutes acceptance. SSDI provides disability benefits for adults who were disabled as children (under the age of 22) who may qualify under the same criteria as children who qualify for SSI, because the disability benefit would be covered under their parents’ social security earnings record.
How to qualify for SSI
According to the Social Security Administration guidelines, a person under the age of 18 is considered disabled if they have a medically determinable physical or mental impairment (including an emotional or learning problem) that:
- Results in marked and severe functional limitations
- Can be expected to result in death; or
- Has lasted or can be expected to last for a continuous period of no less than 12 months
In order to be considered eligible to receive SSI or SSDI payments, families with children on the autism spectrum would have to meet the criteria financially and be medically eligible. In order to be considered, they would also need to provide medical documentation proving their autistic child meets the requirements via medical records.
They would answer a few questions concerning the severity with which their child’s activities are limited. They would also need to show proof of their family’s income level (this could include the income of each member of the household).
The amount of each cash payment would directly correspond to the income level of the household. The smaller the income amount, the larger the disability benefit check.
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After going through the process, one parent, Heather Holly, confided to me that her child on the spectrum only ended up being eligible for $7.50 a month. “It definitely wasn’t worth it for me,” she commented.
Other children and their families have reported having been given over $600 a month in SSI or SSDI benefits. It all depends on the criteria lining up a certain way, and where you live. Each state has their own guidelines for how much they pay out, what resources they take into consideration in order for a child to qualify, and what constitutes acceptance.
Anyone who is receiving social security disability benefits would need to monitor their ability to meet said criteria because their case will be reviewed often. Changes to the household income, for example, would affect the eligibility and the amount of the benefit’s payout.
The other reason there would be a fluctuation in the amount, or even a loss of eligibility would be if there are changes to some of the qualifying disabilities. The Social Security Administration has strict eligibility standards. If the condition your child qualifies for is no longer a problem for them, the ability to receive cash benefits or how much you receive will go down.
Can a child with autism be denied SSI?
So, can your child with autism be denied Supplemental Security Income or Social Security Disability Insurance? Yes. However, according to the Social Security Administration (SSA): “If your child has one of the qualifying conditions, they may get SSI payments right away. If the state agency ultimately decides that your child’s disability is not severe enough for SSI, you won’t have to pay back the SSI payments that your child got.”
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If you are asked to take your child for a medical examination or test, it will be covered. If any of the challenges your child faces make them medically eligible initially for assistance, SSI may be able to help, even if it is only for a little while.
For some families, the process of applying and securing SSI or SSDI, though tedious, is worth the money they receive. For others, the amount is too small to make enough of a difference to go through. The ratio of benefits to hassle is one worth weighing up.
How can you apply for SSI or SSDI?
After determining your family’s eligibility to receive SSI or SSDI, you can apply for your benefits online or make an appointment over the phone. There will be someone who will be helping applicants determine their eligibility, and will guide you through the application process via the SSA’s toll free line: 1(800)773-1213. You may also visit your local SSA office.
Be prepared to answer a few questions, and give consent for doctors, therapists and other professionals who have worked with your child to provide further medical evidence and other information as well. You will want to have documentation to prove your child needs disability benefits ready, including:
- Your child’s medical records, and the names and contact information for all the professionals who have worked with your child, your child’s doctor, and the dates of their appointments
- A list of symptoms which cause significantly restricted function. This could include: extreme limitation in one area or another, significantly restricted repetitive patterns, repetitive patterns of behavior, lack of ability to maintain personal hygiene, and limited social interaction through verbal and nonverbal communication issues
- You and your autistic child’s social security cards
- Proof of income for your household, including family members living with you
- School records: report cards, Individualized Education Plan (IEP) or 504 documentation, teacher’s contact information (they can provide backup for how your child with autism is limited in their function to sustain conversation, complete tasks, and control behavior, or how their social interaction skills, behavior, interests, or activities are affected at school.)
- Proof of citizenship
- Proof of financial resources as laid out according to SSA standards
The more information you have with you, the better. If you feel that your child on the autism spectrum qualifies for disability benefits, act quickly. Apply as soon as you can, so that your child and family can start to receive disability benefits in a timely manner.
The need for SSI and SSDI
Because of the stringent qualifying requirements, the number of children actually receiving SSI benefits is not increasing. As a result, many children denied SSI benefits remain in poverty.
Though some might tell parents of children on the autism spectrum not to bother trying to get SSI for their children, for many it is worth the inconvenience.
One thing is for certain, the need for Social Security benefits is on the rise. The estimated number of people in poverty for the year 2019 was 39,490,096. The US census bureau reported in 2019, the number of people, under the age of 18, who were considered living in poverty was an estimated 13,377,778: a whopping 16.8%!
Maybe in the future things will move forward making the process of acquiring these funds easier. As President Franklin D Roosevelt once said: “The test of our progress is not whether we add more to the abundance of those who have much, it is where we provide enough for those who have little.”
What should families with children on the autism spectrum do?
Just like with so many other things, family members must decide for themselves if SSI or SSDI is something they would like to pursue. If the answer is yes, the work begins to see if their family meets the criteria for their child to qualify.
Upon application, and providing the necessary documents, it is then in the hands of the SSA. If approved, they will need to review their eligibility often and report any changes, however slight, that occur in their circumstances that would potentially affect their ability to continue to receive funds.
They may be denied benefits, but they could also receive an amount that enables them to better care for their children. You never know until you try!
Social Security Administration (SSA). Understanding Supplemental Security Income Eligibility 2021. https://www.ssa.gov/ssi/text-eligibility-ussi.htm#:~:text=WHAT%20DOES%20%E2%80%9CDISABLED%E2%80%9D%20MEAN%20FOR%20A,of%20not%20less%20than%2012%C2%A0months.
SSA. Benefits For Children With Disabilities 2021. https://www.ssa.gov/pubs/EN-05-10026.pdf
SSA. Disability Benefits https://www.ssa.gov/benefits/disability/
SSA. Understanding Supplemental Security Income (SSI) Resources 2021. https://www.ssa.gov/ssi/text-resources-ussi.htm
Anderson et. al. Trends in Supplemental Security Income Payments to Adults With Autism 8 April 2020: https://ps.psychiatryonline.org/doi/10.1176/appi.ps.201900265
United States Census Bureau. Poverty Status In the Last Twelve Months 2019. https://data.census.gov/cedsci/table?q=poverty%20levels%202019-2021&t=Poverty&g=0100000US&tid=ACSST5Y2019.S1701