When you join the Special Needs Mom group, you are thrown for a loop. Everything changes about your life. Your day-to-day routines. Your relationships. Your work. Your finances. Often times, you have to give up your job to take care of your little one.
This is what happened to me when I gave birth to my micro preemie baby. She was born 3.5 months early and was in the NICU for 5 months.
During the first month, I was out of work to recover from my c-section…which hurt like heck!
I was fortunate enough to have maternity leave so my job was protected, but it wasn’t paid. I had accumulated sick days to help cover some of our living expenses in the first few weeks. Thankfully I have a wonderful workplace where generous colleagues donated their sick time to help me out too.
When I was able, I returned to work while my babe was in the NICU. But, I was at a lost for when my baby came home. I was out of any paid time off and my position was no longer one I could fulfill. So, I had to make the difficult decision to leave my dream career so I could begin my new job, a stay-at-home-mommy.
After the first couple of months, it became very apparent to my husband and I that there was no way I could have continued to work outside of the home and still provide the care my daughter needed.
Every week was filled with numerous specialist appointments, therapies, and countless hours on the phone with insurance and medical providers. Not to mention the tube feedings and vomit clean up duties around the clock.
I was exhausted and drained every day. Although my husband works very hard and makes good money, we, like most of you, were accustomed to living off two incomes and it was a stressful time to figure out how to continue to pay for everything.
Above the obvious suggestions of budgeting, cutting out some luxuries, consolidating, purging and selling stuff around the house, and being frugal; it wasn’t easy, but I have actually been able to thrive in my new SAHM role and here’s how:
Disclaimer: Some of the things I mention are SC state run programs, which may or may not be available to you. I still share in that maybe you can research and find something similar where you live.
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MEDICAID
This wonderful yet very complicated resource provides low income families the ability to receive medical services. It is basically like health insurance that is free to qualified individuals. When my daughter was in the NICU, she automatically qualified for Medicaid due to her prematurity. But once she was discharged, that all changed because now it would be based off income. My husband made too much but we desperately needed health benefits for all of my daughter’s medical needs for appointments and supplies.
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TEFRA aka KATIE BECKETT
This is medicaid for children with disabilities. This program only looks at the child, their disabilities and THEIR income, which should be zero. This program has been an absolute life saver so we could continue going to our appointments and getting feeding supplies at little to no charge.
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GAS MILEAGE REIMBURSEMENT
I learned of this from our case manager. The program is through Logisticare, a transportation service for medical appointments. This program offers two things: actual transportation for Medicaid recipients to and from medical appointments, or gas mileage reimbursement if they are being driven by someone. The reimbursement rate is $0.32/mile. It isn’t a ton, but it adds up when you’re driving to specialist appointments and therapies every week and you’re getting money to do what you would normally do anyway. I generally receive anywhere from $100 to $200 a month depending on our schedule.
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MEDICALLY COMPLEX CHILDREN WAIVER
I learned about this through our caseworker. This waiver allows us to receive in-home nursing care for my daughter at no charge. My daughter qualified for this program due to her prematurity and her g-tube. The interview was fairly straightforward. They asked about her medical conditions and what it all takes to care for her throughout the day (e.g. medications, tube feedings, etc.). This has been such a blessing! I was very apprehensive at first, but I don’t know what I would do without our nurses. They have become like family, and they allow me some reprieve, as well as the ability to do part-time work and side hustles for extra money.
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BABYNET
This program is typically available in all states, but it is called something different. For instance, in Florida, it is called Early Steps. It is a program geared to providing therapeutic interventions for children under the age of 3 with anything necessary for growth and development. Our Early Interventionist comes once a week to provide therapy to help L meet developmental milestones, such as grasping, climbing, walking, talking, etc.
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HEALTH INSURANCE PREMIUM PAYMENT (HIPP) PROGRAM
This program is through Medicaid and is a life saver too. Currently, we have private health insurance through my husband’s employer, but since it is a smaller company, our monthly premium is insane (like a mortgage insane)! We have Medicaid as our secondary insurance, and so Medicaid has this program that will pay for the child’s insurance premiums. The notion is that this would be cheaper than being our primary insurance and paying for all of the child’s claims in fully.
These resources are beneficial in two ways: by giving us the medical support for services and supplies; and giving me the time and energy to seek out part-time employment.
I never thought I would ever need to take advantage of resources like these, but here we are. Knee deep in specialist appointments, therapy sessions, and down one full-time income. I am SO thankful that there are programs like these because honestly things would be much more stressful. Now, I am a work-at-home-mommy, and I love it.
Hi Mary! This was such a wonderful post. I think educating others about the resources that are available out there is so helpful.
NP