The light at the end of the tunnel has been very distant for us. For those that may be new readers to my blog, since 2017, my daughter received multiple medical benefit denials and she also lost several services and support for her care. This almost 2-year struggle was just that…a struggle, but we survived! As of May 2019, my daughter now has insurance that covers 100% of her care, and in addition, she also has 7-days a week of in-home nursing care! Talk about the light at the end of the tunnel, right?! Now you’re probably wondering, how did we go from zero coverage to full medical coverage and 107.5 hours a week of nursing?? Let me break it down for you!
Understanding Your Rights
As a working mom, it is extremely important for me to fully understand all of the labor laws and also take advantage of any opportunity that I can that has a positive impact on my family. In March of 2019, I took a 12-week leave from my job under the Family Medical Leave Act (FMLA) This allowed me to stay at home with Genell and ensure my job was still secure. If you opt to utilize FMLA, be sure to keep the communication open with your HR department. That is what they are there for!
The “Home Field” Advantage
This definitely is no sporting event, but raising two special needs children can often feel like you’re playing against some tough opponents i.e. health insurance, state guidelines, the school system, medical professionals, etc. Some may feel as though there is no winning with these opponents, but let me tell you how we have remained undefeated.
Opponent 1: Social Security Administration
In 2017, our entire world was flipped upside down when the medical coverage was taken away from us because “they” said I was over the income guidelines. Albeit, I could have reduced my hours and/or found a lower-paying job back then, that was not an option! However, with me being on FMLA, I had the proof to show the SSA that I was now within the guidelines. We had the “right play to call”, and Genell began receiving her SSI benefits within 4-weeks. That makes us 1-0!
Opponent 2: Social Services
Some prefer to stay far away from this office while others, unfortunately, abuse it. But what about families that actually need the help. Well, that my friend was my family. During the 12-weeks that I was on FMLA, I was eligible for services such as SNAP, or more commonly known as food stamps. I am not ashamed to say we utilized this program, because you know what…my family deserved (and needed) the assistance. I swallowed my pride, put my ego aside, and had a benefits card that helped us get through the financial impact of being on FMLA. We’re 2-0 now!
Opponent 3: Medicaid
Now this one can get ugly. You’re dealing with the world of insurance, yikes! I learned my lesson in 2017 when Genell’s Medicaid coverage was taken away and vowed to never be put in that situation again! As long as Genell is receiving SSI, she will have Medicaid coverage. But what happens if she loses her SSI? No problem for us, because this mama has done her due diligence. In the state of Maryland, we have an income waiver, which basically ignores your income and allows you to keep the Medicaid coverage. There is, of course, eligibility criteria, but since Genell receives everything she needs now, we have the right ammunition (or shall I say play to call) to keep things moving uninterrupted. So for me, that makes it 3-0!
Opponent 4: Private Duty Nursing Care
In Florida, where we used to live, Genell had a nurse 10-hours a day! But up north in Maryland, it was like pulling teeth trying to get her covered! Either her condition was not extreme enough or the running trend was, I made too much to receive that service. This all changed once I was on FMLA. Prior to going on this leave, Genell’s condition got worse. She was diagnosed with epilepsy (seizure disorder) and we later found out she was aspirating. All of these allowed her to quickly get the private duty nursing that she should have had years ago. She now has 17.5 hours a day during the week, and 20 hours over the weekend. We’re 4-0 y’all!
If you’re still with me, you see that I was able to navigate through some heavy-hitting “opponents”. As the sole provider for my family, they depend on me to ensure they have everything that they need. The “season” is over, but we are prepared for next season and any new encounter (or opponent) that I may face!
How I Can Help You?
Shortly before I took my FMLA, I launched my non-profit, Here For A Reason, Inc. We are a 501c3 organization and provide financial and educational support to families caring for a loved one with a complex condition. You may be someone that is not working and do not have FMLA as an option. Or you may be someone that cannot afford to utilize FMLA. Whatever the case may be, we want to help you along your journey, so please do not hesitate to contact us at firstname.lastname@example.org.