When my daughter, Mikayla, was born at 32 weeks gestation the doctors told us to expect her to be in the NICU until close to her actual due date. That meant that she was going to be there for approximately eight weeks. They were pretty close with their approximation. She came home 49 days later.
This was not the first time I was faced with having a child with special health care needs. My son, Joseph, has special health care needs as well, so I was already familiar with most of the programs I needed to apply for. I filled out the application for the DD and SS waivers. I made an appointment with the Social Security office to get benefits started. I made contact with First Steps.
The one thing I wasn’t familiar with, but was fortunate enough to have friends who were, was a process called Institutional Deeming for Medicaid Disability. In this case, the child must be hospitalized for more than 30 days and be considered medically eligible, but the parents’ income and resources are not considered. To be medically eligible, the child must be determined to have a medical condition that will last a lifetime and is substantial enough to inhibit growth and/or the ability to learn, and/or create developmental delays. This can include significant prematurity as well as serious illness and disability. Mikayla was not just premature but also had an extremely low birth weight for her gestational age, and was diagnosed with a rare neurological condition which would affect her development and overall health.
To apply for this program, you must specify you are applying for Medicaid Disability on the basis that the child has been hospitalized for more than 30 consecutive days, in which case parental income and resources will be waived. I went to the hospital social worker and asked her to apply for us on day 30 and she did. But anyone can do it. It is helpful to include copies of the child’s birth certificate; social security card; a parent’s driver’s license with current address; the front and back of medical and dental insurance cards; a signed statement from the child’s doctor of the child’s diagnosis, date the condition started, and the expected prognosis; and any medical records that pertain to the reason for hospitalization, such as hospital progress notes and doctors’ notes. If you do not provide these documents, the Medicaid caseworker will have to obtain them from you and your child’s medical providers before the review. Applications may be made on the standard Indiana Application for Assistance, but you must note that you are applying for Medicaid Disability on the basis that the child has been hospitalized for more than 30 days and that parent income and resources should be waived. If your child is granted Medicaid through this process, coverage should continue until a year following the application’s approval.
Mikayla was granted Medicaid Disability through this process and it saved us thousands of dollars. At one point during that 49-day stay, I had the hospital’s finance office contact me and ask to meet. They began to tell me that she was getting close to her lifetime cap with our private insurance (at that time, the Affordable Care Act was just a few months away from going into effect so the lifetime cap was still an issue) and wanted to know what my plan was on how to pay for her stay once that happens. Thankfully, I was able to tell them that we were applying for Medicaid Disability through Institutional Deeming.