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Understanding Disability Benefits for Children with Down Syndrome

373887_348048645209613_1419237733_nThis is a guest post by the website Social Security Disability Help.  All of the resources on their website are free, including a legal consultation.

Understanding Disability Benefits for Children with Down Syndrome

Individuals who have Down syndrome can grow up to lead happy and productive lives. However, achieving independence often requires hard work and assistance. This level of support can put significant strain on a family’s finances.

If your child has Down syndrome and your family is struggling financially, you may be eligible to receive Supplemental Security Income (SSI) benefits on his or her behalf. These benefits can be used to meet your child’s day-to-day needs and can help offset the expenses associated with his or her condition.

It is important to understand that the application process for SSI benefits can be long and complicated.  The requirements are very strict and applicants are screened thoroughly. Even the smallest mistakes or inconsistencies can cause your claim to be delayed or even denied. For this reason, it is in your best interest to research the SSI program and gain a deeper understanding of the application process.

This article will serve as an introduction to the SSI program.

Technical Eligibility

The Social Security Administration (SSA) operates two disability benefit programs—SSI and Social Security Disability Insurance (SSDI). They are not the same and are run very differently. Children will only qualify for SSI under their own record because eligibility for SSDI is based on employment history and tax payments.

SSI is a needs based program that distributes benefits to disabled individuals of all ages who earn very little income and who have few financial resources. Eligibility for SSI is based solely on an applicant’s financial standing. Because children don’t often earn income or support themselves, the SSA will assume that a parent or responsible adult contributes income to support the child. For this reason, the SSA will use the child’s household income to determine whether or not they qualify.  This is called deeming.

The amount of income that will be deemed is based on the number of children in the household, the number of parents in the household and whether all income is earned or unearned.  Learn more about SSI, here: http://www.socialsecurity.gov/ssi/text-child-ussi.htm

Medical Eligibility

In addition to the above-mentioned financial criteria, all applicants must also meet certain medical requirements. These can be found in the SSA’s official manual of disabling conditions—commonly referred to as the Blue Book. The Blue Book is broken into sections, each of which lists different medical criteria for certain disorders. The listing for Down syndrome can be found in Blue Book section 110.06—Non-Mosaic Down Syndrome.

Based on this listing, your child must supply the following medical evidence:

  • A laboratory report of your child’s karyotype analysis signed by a physician or the karyotype analysis not signed by a physician but accompanied by a note signed by a physician stating your child has Down syndrome; or
  • A physician’s report stating that your child has chromosome 21 trisomy or translocation as demonstrated by a karyotype analysis and distinctive facial or other physical characteristics of Down syndrome; or
  • A physician’s report stating that your child has Down syndrome characterized by the distinctive physical features of the condition as well as evidence proving that the child functions at a level consistent with those who have Non-Mosaic Down syndrome.

If your child has been diagnosed with Mosaic Down syndrome, he or she will not be evaluated under this listing. Instead, your child will have to qualify under a listing associated with his or her affected body system(s).

Beginning the Application

An important part of the application process is the application preparation. Your preparation should include the collection of all necessary records and documents. Non-medical records should include financial records, your child’s birth certificate, your child’s IEP or IFSP plan, the Social Security numbers for all household members, and contact information for your child’s schools, teachers, therapists, doctors, and caretakers.

Medical information should include the documentation listed in the Blue Book requirements as well as a history of your child’s diagnoses, treatments, clinical findings, laboratory findings, and a statement from your child’s treating physician that attests to his or her limitations.

The actual application is made up of two forms and an interview. Once you are ready to begin the application process, you should call the SSA immediately to schedule your child’s interview. This is due to the fact that it can take months before the next appointment becomes available. While you wait, you should continue to collect the required information. If you cannot locate certain required documentation you should still go to your scheduled appointment. The SSA will work with you to procure the necessary information. Although one of the two application forms can be completed online, many parents prefer to complete both at the time of the scheduled interview.

Receiving a Decision 

Following your child’s interview you will receive a written response from the SSA stating their decision within the next five months.

If your child’s initial application is unsuccessful, it is important that you do not panic or give up.  You can appeal this decision within 60 days from the date you received your notice of denial.  At this time you can provide additional evidence and documentation to build a stronger case.

Although the appeals process may seem overwhelming, it is often a necessary step toward receiving financial support. In fact, statistics have shown that more individuals are approved during the appeals process than during the initial application. Remain organized and persistent and your child is likely to receive the benefits that he or she needs.

For information regarding the adult application for disability benefits or about the application process for someone with Down syndrome, visit the following page: http://www.disability-benefits-help.org/disabling-conditions/down-syndrome-and-social-security-disability.

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27 Responses to “Understanding Disability Benefits for Children with Down Syndrome”
  1. Garry says:

    If a child is found to be disabled because of Down’s Syndrome and receives an SSI benefit, can the divorced mother who has primary custody and does not work also receive government assistance?

  2. Malcolm says:

    My friend’s son have all the signs of Down Syndrome but was never tested because they live in Guyana. They recently got visa for the child to come to the US for medical attention. due to the high cost of health care here in the US the parents can’t afford to have the testing done for the child. I was wondering if there is any assistant for a child who is not a citizen or resident of the USA? Thank you.

    • Jaqui's Mom says:

      I know that at the University of PA they do not discriminate and have a financial department to help people in need. I think many children’s hospitals do help with financial costs if you speak with the billing department and fill out the information they need. Good luck. go to a Children’s Hospital.

  3. Patrick falaniko says:

    Hi I wanted to know if my son would be eligible for ssi. He was born with mosaic down syndrome. But they took him off ssi when he was 4 or 5 months. Now he is 7 years old now and you can see everything a kind with downs has. I’ve been told he is eligible from family and friends but we have been struggling with all his medical bills and needs. We have done good so far without help from anyone or anything but we just need it for him .

  4. DSIA2 says:

    Hi Patrick, please contact Social Security Disability directly with your question – http://www.disability-benefits-help.org/. They should be able to help! THANK YOU!

  5. Tish Jones says:

    We are about to apply for SSI for our daughter with Down Syndrome. She turned 18 this month. She also has some medical issues she is currently struggling with. How do you recommend parents answer the question:
    “What date did you become unable to work?” that is found on page 1 of the application?

  6. Diana Liu says:

    my daughter is now 12 and she has down syndrome. I am trying to apply for medical help to cover her therapist. Our insurance co-pay is super high and we are unable to keep up. I never apply for benefits before, so I don’t where to start.

  7. Kristina Dial says:

    Does anyone know of any organizations or charities that can assist with medical costs for a down syndrome child…. We do not qualify for ssi. Our little girl DESPERATELY needs a sleep study because she stops breathing a lot while sleeping. She also has a dramatic drop in her oxygen level.. normal levels are typically above 95%, she drops into the upper 80%’s. the sleep study costs $6,000-$7,000. might as well be 6-7 million. any suggestions will be GREATLY appreciated

  8. cindy says:

    i have been fostering a child with trisomy mozac number 14 she was digonasted at birth we are planing on adopting her but realy dont know wich one we apply for when the time comes we have been told out come is death. wich one is best for her she does need all she can get we only get 900 a month to take care of her ssi or ssd been told ssd would pay more

  9. lionel jayasinghe says:

    sir /madam i have downs baby and anther one child my downs baby.s age is five years so my wife is not working i am working as a security guard so i need some financially help for my downs baby so sir if your organisation can help me it is a grate help for my family thanks lionel

  10. Gabriela says:

    Hi my ñame is Gabriela and i have a down syndrome son His 3 years old
    I was wondering if I would qualify for the SSI my husband is the only one that works and he makes like around $700 a week

  11. faye says:

    Can a newborn qualify for benefits. He is 5 months old and has already had stomach and heart surgery. In and out of hospital. Mom may have to quit work and care for him. She is the insurance carrier on him.

    • DSIA2 says:

      For information regarding the adult application for disability benefits or about the application process for someone with Down syndrome, visit the following page: http://www.disability-benefits-help.org/disabling-conditions/down-syndrome-and-social-security-disability.

    • Susan J says:

      Yes if your family qualifies due to your household income. My child received at 3 months old who has trisomy 21. But I will tell you this I am unable to work because she would lose her health benefits. Which is so much more valuable than the little amount she gets ssi monetary benefits. Yes the check us helpful but if we lost her health benefits I’m not sure what we would do. I’m not sure how I could hold a job and get her to all her therapy and other doctor appointments plus preschool then follow up at home with therapy practices. Most admiration to the families that are able to accomplish that. Her dad is a truck driver and is only home for 34 hours every other weekend so the rest is left to me.
      What I was told by ssi office is that as long as she earns a dollar she will get her health benefits too. But if she is not eligible for ssi then she loses health benefits too.
      Even if we could afford excellent health coverage I could not afford the extra in the copayments. She sees an OT, PT and speech therapist weekly. Along with going to other specialists more often than other children for preventative well care. This includes cardiac, respitarory, ophthalmologist, GI, pediatrician, hearing tests,etc.
      she has had eye surgery, sleep study, numerous cardio appointments and thank GOD her heart surgery we thought was going to happen at 2 years of age was after all not necessary! Her heart self healed!
      My sweet little girl requires a lot of health care and do worth it. So I would advise down size if you can, if 1 parent can be your child’s main care giver for household income and the other be responsible for health and well being appointments. Also if you have a children’s hospital around where you live I recommend going there for everything! So if you take to see regular dr they can see and or recommend other specialists and all inner connected with notes etc. plus usually really good doctors and therapists.
      My daughter also benefited from what is called in Kentucky as first steps. Which was therapy but in my home! So wonderful no cost she had Pt, Ot and speech therapy and we never left our home. We also had assistance and meetings to get her to preschool when she turned 3. That was very helpful. Every state is called something different. Call and join Down syndrome association in your area if not already, they will help you with your state and local organizations/ benefits your child us e titled to. Plus you can speak with other parents who may just make you feel so much better on an overwhelming day of give advice on multiple topics.
      Hope this book I wrote helps!

  12. DEE says:

    Our grandson is ‘due’ in Jan. but tests show without a doubt that he has Down Syndrome and excess fluid on the brain. They’re doing tests on his heart and other tests tomorrow. He had NO nasal bone, tho he does show a small nose on the ultrasound.

    The mother has always worked and this is her first child (she’s 35). They will need help in so many ways.

    Since they have the paperwork for the tests, can they file immediately after the child is born? Doctor has suggested he may have to be delivered a month or more early if the fluid on the brain continues to accumulate. It was past high normal at 19 weeks.


  13. Daniel Fratsrcangelo says:

    Yes currently I am concerned to the usability of these checks. Is there a way to preven the parent of whom the check is addressed to from preforming the act of using the check to pay for unnecessary items? If there is such a way or if there are possible penalties or restrictions that can be placed on these checks I would love to be informed.

  14. Norma says:

    My husband and I are planning to bring my mother (not a US citizen, she will be a resident) and my sister with Down syndrome ( US citizen) she is 42 years old, to the US, we will be paying high premiums for medical insurance for my mother, can my sister Get medicaid And SSI , we are still working but will retire in 2 years. We are 64 and 62 years old respectability. What is the earning limitation to applaying for SSI?

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