Ok I am going to clarify up the insurance issue. I truly hate talking about money and this is why I didnt do this is May, the first time Ali lost her insurance. Ali started receiving disability late last year, which also put her on traditional medicaid. However, twice a year my husband will earn 3 paychecks which puts us about $50 over the gross pay limit for disability, therefore she loses her insurance. Due to this I cannot apply for her to get state medicaid until the 1st of the month that she loses her medicaid through disability and then it can take up to 45 days for them to even approve, by which time she already has her traditional medicaid back. The first time this happened I looked everywhere for help to cover medicine and doctors, I couldnt sign Ali up for Obamacare because our income is too low, and the cheapest private insurance I could find was $350 a month with a $6000 deductible due to the prior condition, therefore costing us more then even the current monthly medical costs. I am still working on how to figure this out and seeing how we can make sure she is covered year round because the costs we have no is no where near where it will be, and this is without Ali even receiving the full services she is supposed to be. Alis physical therapy costs $65 a visit, she is supposed to go twice a week which she is also supposed to be receiving occupational therapy twice a week (but we cannot find a therapist) and speech therapy once a week (still waiting on her the therapist to be able to accept Alis medicaid) each of these will cost $65 a visit as well. This is a loophole in the system we are stuck in and doing the best we can with what we have. Her medical costs will only go up as she requires more medicines, machines, and hospital trips/stays as her disease progresses. This is the medical expenses we are talking about when we are raising money. This insurance issue is why Ali currently has no neurologist, she was scheduled to see the neurologist, that was taking over her case when Dr. Stocco left, in May. The appointment was set up for 6 months so way before we knew that she would not have medicaid, after seeing how much they would charge us to just pay out of pocket we realized we couldnt do it so I had to cancel that appointment, upon trying to reschedule they told me he couldnt see her for another 8+ months which was not an option because he wouldnt even discuss anything with me about her case until he saw her. Upon looking for a new neurologist, I only found 1 who couldve seen her this month but I was informed if we switched neurologist we could not change again, and the doctor I was requesting was a resident and would be gone at the end of the year (therefore only seeing Ali once). I saw no point in bothering with that appointment because I didnt want to have to start over twice in a year with working with a new neurologist and one that probably hadnt even heard of the disease or worked with any children with it. Please dont think we feel entitled to anything, because we do not and we absolutely hate having to ask for money. We are doing the best with what God has given us. I am not trying to rant, I am just trying to fully explain the situation to those who have never dealt with this situation. It is very stressful, especially when added to everything that goes on with taking care of a special needs child, especially with a progressive disease that just gets worse when it feels like it. Every single penny that is donated is appreciated more then we can ever say. God Bless you all. I will be posting our final pictures tonight of Alis cards as well as the daily update.
Posted on: Mon, 22 Sep 2014 17:57:58 +0000
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