There are people who assume that families such as mine get the support needed for our loved one with special needs. They assume we get all of this government assistance and nursing to help us manage our hectic lives. The reality is, those assumptions are not true.
Getting the assistance we need to support our family’s needs is very hard to obtain. The system ESPECIALLY here in Georgia is designed to make you quit. You apply for SSI and it could take years to get it. Once you have it, you are bound to a set amount of money you can make, if you exceed those limits they will cut you off and say you owe them money. The amount you receive in SSI is hardly anything and you can barely work because you will lose Medicaid which is what we really need in order to cover medical expenses. You are in constantly in a loose loose situation. There are waiver programs to help you cover expenses, however, the waiting list is either 5 years or longer or you apply and get denied because your loved one isn’t sick enough.
People assume that when you have a disability you instantly get everything you need. I can count the number of times I got fired from a job because the school called me nonstop about my son, Anthony, being sick. What was I supposed to do, leave him there, he’s medical fragile, I had to go get him against the warnings my job would give. Yes, I had intermittent FMLA, however, that only last so long. There is only so much time you can take within the guidelines set in the FMLA documents. Those FMLA hours will also go unpaid unless you have PTO and then you find yourself using up time you need to take breaks so that you can keep your sanity.
People assume that SSI gives this ridiculous amount of money that will sustain you and your family. Truth is, SSI give pennies, the most and maximum amount I could ever get for my son was $700.00 per month. Yes, you read that correctly, $700.00 per month and I couldn’t make more than $2000.00 per month. Anything over will disqualify you for benefits for that particular month. So heaven forbid you want to earn extra money by working overtime, heaven forbid you take a loan from your 401K and it hits your bank account or a check is cut, they will see that and say that counts towards your income and you will be penalized for having more than $2000.00 per month. Now, if you no longer qualify for SSI there are other Medicaid programs, however, the application process is confusing and hard to get passed. I have submitted for based on income also called Deeming Waiver (Medicaid for those who do not qualify for SSI). That application has trick questions and is very vague on what to include in order to get it approved.
People assume that I get nursing care from the state to help me out. That’s is not true, there is another waiver called GAP and the only way to get that is 1. you have Medicaid and 2. your child is medically fragile. Now here’s when it gets tricky, my son has a feeding tube and needs suction to keep his airways open. GAP doesn’t deem him medically fragile therefore LPN nor RN level of care is warranty. In other words, they feel he will do ok with a regular CNA who is unable to suction nor feed him via his feeding tube because they aren’t trained to do so. This would be why, I would be fired so often from jobs, I would have no one to fill in the gap that was qualified to do so. Now, I did at one point try a CNA, however, that was a train wreck that almost had me on the 5’oclock news. 
I say all of this to say, we don’t get the help that everyone things we get. We literally fight for every small thing we obtain. We are struggling, some more than others and all we want is a help. If you have a friend that is caring for a (dis)Abled loved one, offer to send a maid service, learn how to care for their loved one so you can offer some relief, offer to cook or send a meal service, something that will help make their life just a little bit easier. We don’t want much, we just want help so that we can have a little piece of typical life like everyone else. And above all, #bePositive
Much Love
Libra Hicks.
Great read. Thanks for sharing.
Thank you, Wanda, for reading. Sorry for the late response.