Hand to Hold's Official Blog: Written by Parents for Parents

Social Security Disability Benefits for Your Preemie

Baby touching a laptop by Paul Inkles/Flickr available through CC BY 2.0As if being thrust into preemie parenthood is not overwhelming enough from parental and medical viewpoints, the financial aspects of an early arrival can leave you feeling just as helpless.

When Roxy was just a couple days old, we were met by a hospital social worker at her bedside.  We were asked for a variety of information including insurance coverage.  At this point, Russ and I had not discussed whose insurance would be used for Roxy.  The social worker quickly took information for both so that Roxy would have coverage from both.  (Did you know that the decision of which insurance is primary is settled by whose birthday comes first in the year?  My insurance was primary because my birthday is in January whereas Russ’ birthday is in June.)

Through our discussions with the social worker, we were also told to apply for Social Security Disability benefits for Roxy.  I was a bit surprised to learn that a child born weighing under two pounds, ten ounces, is automatically entitled to SSI benefits as well as Medicaid coverage.   This handy chart from the Social Security Administration shows the weight and gestational age for qualification.  The social worker urged us to visit our local Social Security office to start the application process.  I opted to call our local Social Security office since I was recovering from a Cesarean section.

We were told that Roxy qualified for benefits as we expected she would due to her birth weight (1 pound, 9 ounces at 29 weeks gestation).  We were a bit surprised to find out that she would receive a check for $30 per month while in the hospital and would receive Medicaid benefits.

Needless to say, the Medicaid benefits were extremely helpful for the $250,000 hospital bill our preemie incurred during her NICU stay as well as the $20,000 doctors’ bill.

Following the advice of the social worker was a lifesaver for us.  I have read other horror stories about preemie parents and their trials with the Social Security office as well as being denied benefits, but we were fortunate to work with friendly and helpful staff at the Social Security Administration.

One thing to remember if you find your preemie receiving these benefits:  Contact your SSA office immediately after your child is discharged.  We mistakenly thought that the hospital would alert the SSA of Roxy’s discharge from the NICU.  When we called a couple months later, we were told we would have to reimburse the $30 per month Roxy had received since discharge.  However, we also found out that Roxy was entitled to receive one month of full SSI benefits (approximately $600 or $700) for the month of her discharge.  They simply subtracted the amount we owed to them from the amount owed to us for Roxy’s discharge month.

For more information on applying for Social Security benefits for your preemie, the Social Security Administration has a great website with lots of information and tools as well as an office locator.

Did you apply for SSI benefits for your preemie?  What advice would you give parents applying for assistance?

Samantha Pridgen About Samantha Pridgen

Samantha (KY) is the mother of Roxy, a micropreemie turned preschool princess. Roxy was born at 29 weeks weighing only 1 pound, 9 ounces. Now a healthy 4-year-old, Roxy has no long-standing complications from prematurity. Samantha writes about her family as well as Roxy's early arrival and prematurity at Mommy to a Princess. You can also find Samantha on Twitter, Facebook, or email her at samanthap@mommytoaprincess.com.

Comments

  1. Hello, I’m searching for answers regarding my preemie. She was born at 24 weeks weighing .77 kg. She received SSI of $30 and Medicaid here in Texas. She was in the hospital 115 days and I brought her home on oxygen and home health with therapy. I contacted Medicaid and Social Security and told them we were home, but they never updated the system so we continued receiving benefits. I thought she qualified because they didn’t stop. Now Social Security is saying we might have to pay them back, which I’m not too worried about the $30 a month. I’m worried about the possibility of having to reimburse Medicaid. Do you know anything about that?

    • Hi! I’m on the same boat now…what finally happened in your case? My son has been going to dr appts and therapy for the last year. I kept calling ssa and they kept telling me that someone would call me to do the interview over the phone. The last person I spoke to said I had to go in person.

  2. i have oklahome medicade for my son its sooner care and hes in the hospital in texas and i got a thing in the mail for texas medicade and when i call the texas medicade people they said the govt. signed him up for it so does he qaulify for both or what?

  3. I wish I could tell all the parents out there with a preemie in the hospital that they need to contact Social Security office right away. We did not have a social worker to work with so we found out the hard way which means we got no help from the government at all. Baby was in the NICU for 8 weeks and he was born at 29 weeks. Since we both work, we do not qualify for anything at all in the state of Utah. I was out of work for couple of months to take care of the baby but it was already too late to ask for help. The Social Security office person told me that I should have called the first day when my baby was in the NICU. I so wish someone would tell us something instead of letting us navigate through this whole experience all by ourselves. We do not qualify for Medicaid nor Social Security. They looked at our gross income which nobody gets to take home. As you can tell, we were very frustrated and stressed over finance and we are still trying to recover from it. Baby is worth everything, but we do wish that things could go a little smoother when you are already emotionally taxed. Please talk to a social worker as soon as your baby enters the NICU!!

  4. My daugther was born 33 weeks and was 2 pounds. She stayed in the hospital for 7 months. Had open heart surgery and is G-tube dependent. She recieves $30/month from Social security in VA. She has turned 1 year now but, still looks like 2 months. My question is, will she get more for SSI? Do i need to contact Social Security? My income is high, can this be reason she is not getting more?

  5. Hi, My daughter was only born 4 weeks early and was already 7 lbs upon delivery. Unfortunately, since then we have been in and out of the doctors office and hospitals with all kind of complications, minor maybe. RSV, ecsema, reflux, breathing treatments, chest xrays, oral steroid treatments and all. Just wondering if she may or may not qualify. I have a job but unfortunatly, her illnesses are getting really costly, as i make decent income but I am as well a single parent of 2. She is 8 months old and I have a son who is 2 years old.

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