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SSI and Low Birth Weight Preemies

SSI financial assistance for low birth weight preemies in the NICU.

By Nicole Zimmerman, author of The NICU Rollercoaster

The bills for an extended stay (or a short stay) for your preemie in the NICU can be staggering. Even if you have good medical coverage, co-pays and coinsurances can really add up. As a parent of a preemie in the NICU, you may have a social worker assigned to you. Even if you think your income might be too high, talk to your social worker about programs that might help you. If you don't have a social worker, the Internet or your local library can both be good resources for information about programs that might help you and your preemie.

For example, because our premies' birth weights were below 2 pounds 10 ounces, they automatically qualified for Supplemental Security Income (SSI) during their hospital stay despite our income. In our state of North Carolina, children who qualify for SSI automatically qualify for Medicaid.

The Social Security Benefits for Children with Disabilities pamphlet dated January 2005 states, "It can take three to five months for the state agency to decide if your child is disabled. However, we consider certain medical conditions so limiting that we expect any one of them to disable a child. In these cases, we make SSI payments right away and for up to six months while the state agency decides if your child is disabled. Following are some of those conditions: HIV infection, total blindness, total deafness, cerebral palsy, Down Syndrome, muscular dystrophy, sever mental retardation (child age seven or older), birth weight below two pounds, ten ounces. If you child has one of the limiting conditions that is expected to disable a child, he or she will get SSI payments right away. Hover, the state agency may finally decide that your child's disability is not severe enough for SSI. If that happens, you will not have to pay back the SSI payments that your child got."

Once our twin preemies came home, we had to prove that our income was under certain limits (it wasn't), and they were dropped from the plan. However, for the time they were on the plan, Medicaid paid for that 10 percent of the bills the primary insurance didn't cover. The only thing we had to pay for was 10 percent of my hospital stay and C-section. We also received SSI payments of $30 for each child each month until they were dropped from the program. You can get additional information at or by contacting your local department of social services for more details.

Nicole Zimmerman is the co- author of The NICU Rollercoaster, the touching true story of the early arrival of premature twins and the ups and downs of their 160 days in the hospital. Heart-warming personal preemie blog posts are interspersed with helpful information for preemie parents coping with the issues of very early or small preemies.

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