“Parents need all the help they can get. The strongest as well as the most fragile family requires a vital network of social supports.” Bernice Weissbourd
In my work as an advocate one of the questions I hear most often is from parents looking for resources to offset the cost of raising a child with special needs.
“It takes roughly $240,000 to raise a child from birth to age 18, according to the U.S. Department of Agriculture. The cost of raising a child with special needs can run double or triple that amount. The Centers for Disease Control and Prevention found in a family survey that 40% of families said having a child with special needs caused financial hardships.”*
So knowing those are the numbers, I love telling parents about the Supplemental Security Income (SSI) program and about the benefits that their child could derive from it.
Supplemental Security Income – SSI
SSI is a Federal program established back in 1974 to assist individuals over the age of 65, or those who are disabled or blind. The program provides a monthly cash assistance and may open the door for other government benefits like Medicaid and Supplemental Nutrition Assistance Program (SNAP)
Who is eligible?
Eligibility is met when the individual is determined to have a disability and they meet the financial requirements. According the the SSA website, if you are a child under the age of 18 – we may consider you “disabled” if you have a medically determinable physical or mental impairment, (including an emotional or learning problem) that:
I am going to focus primarily on the child side of SSI.
Now, what does SSI call resources?
When looking at a child, the income of both parents counts. The SSA also looks at any cash, bank accounts, savings, land, vehicles, personal property, life insurance and anything else you can use to procure cash that can be used for food or shelter. The reason behind this is because the money received from SSI is to assist the person to provide for the essentials for living – food and shelter.
This is where some families stop the process because they think they may not qualify because of income. However, SSA looks also at how many people there are in the family, if there are more than one disabled individual at home, as well as other information.
I always recommend to the family to go through the process to see if the child qualifies as being disabled first.
To receive SSI you must be a US citizen or a qualified alien and you must be living in the US. The exceptions to the living in the US are if you are:
Who determines the disability?
This information is reviewed by SSA medical consultant and they are the ones that make the determination. If the SSA needs more information they will let you know. They may ask you to take the child to be seen by one of their doctors which will be at no cost to you. The medical consultant will receive the information and made the determination whether the child’s impairment meets or is medically or functionally equivalent to one of the conditions listed on the SSA’s list of impairments.
What other documents do I need?
Here is a short list; you might need more or less depending on what your child’s condition is.
How long does it take?
This process may take approximately 3 months, but it will also depend on where you live and how complete the information you provided was. We have talked before about keeping all your medical records available. This is one of those times where your Home file will be your best friend. One of my former colleagues and a mom of 5 children with disabilities herself, shares her strategy when providing information to agencies:
“I make copies of all the documents I am going to provide an agency. I even make copies of documents I know are important and might show how my child is disabled. I make two copies of the list of documents I am providing. As I hand in a document, I check what I am sharing and I have the person initial they received it. And I file this copy with the copy of the application, so should the agency call me saying they need a document, I can look at the list and see if I have given it to them or not. The second copy I attach to the packet so if I need to fax it again, I have it handy. Once the application has been processed I file the whole packet together.”
She shares that this helps her keep everything handy until she hear from the organization and at the same time, if she needs to appeal any decision, she has everything together so she can do the appeal in a timely manner.
I know I don’t qualify because of income, why apply?
This is another common question I get, and my answer is always the same. You want to make sure your child qualifies because of his/her disability. Your financial situation may change, your living arrangements may change and you may find yourself needing that extra financial support and you may now qualify for the financial benefit. Since your child has already been determined disabled, you many now only need to provide the financial information to see if you child now qualifies for the financial benefit.
Also, believe it or not, your child will turn 18, and at that age, your income and resources no longer count against your child’s resources. This happened with our family, once our daughter turned 18, I reapplied for SSI for her and she has been receiving that benefit ever since.
This may seem like a long process and in some ways it is, but the knowledge that your child will be receiving additional supports is worth the effort.