Awhile back I posted about about special needs parenting and the things we don’t say. A lot of special needs parents could relate to that post. So I’m going to go out on a limb and guess that quite a few of them will relate to this post as well.
Here are just a few of the conversations I’ve had in the last several days that I shouldn’t have to have.
At the pharmacy
Me: I’m here to pick up Sylas’ prescriptions.
Pharmacy lady: We have one ready for $1,482.
Me: Uh he has insurance that should cover that.
Pharmacy lady: It says that the insurance is canceled. If we fill the other four prescriptions it will be $4822. I’m guessing you want to wait on that.
Me: Yeah good guess.
With the insurance company call 1
Me: I’m calling about my son’s insurance coverage. I’m told it is canceled.
Insurance lady: Yes it is. You make to much money.
Me: He has a disability and I don’t make too much money.
Insurance lady: Well the computer says he doesn’t have social security coverage anymore because you make too much money. You do make close to $6,000 a month so that is why.
Me: Ha! I don’t make anywhere close to $6,000 a month. Hell I don’t make $6,000 in two months. How do I fix what the computer shows?
Insurance lady: Well since you make too much money you would have to quit your job or take a pay decrease and then it would reinstate.
Me: So if I quit my job my child would have insurance?
Insurance lady: Yes.
Me: Okay then how would we pay for everything else. How would I have insurance?
Insurance lady: Well you would qualify for benefits as well.
Me: Wow, this sounds like systemized poverty to me. Do you think this is part of Gov. Brownback’s plan to have able-bodied Kansans work and support themselves?
Insurance lady: I can’t really speak to his plan but I know if you are unemployed he would qualify. It’s an option.
Conversation with social security
Keep in mind calling social security took 6 calls over 2 days to schedule call backs from them because the waiting line was so long. It also meant getting disconnected twice on call backs.
Me: I need to submit new information regarding my pay to make sure my sons insurance is reinstated.
Social Security person: You make too much money.
Me: I can assure you I don’t make too much money. Can you give me a fax number to send my pay check stubs too.
Social Security: Well you make way to much money.
Me: Listen I’m sitting here looking at my paycheck stubs and my overdrawn checking account. I DON’T MAKE TOO MUCH MONEY.
Social Security: Well you can go to your local office and turn them in there I suppose. But the computer shows you make too much money.
I then go to the local where I’m greeted by a security guard. I never understood why they had a security person until now. It’s so frazzled moms don’t lose their shit.
I take my number and get to the window. I explain the whole situation and had the lady my pay stubs. She begins to laugh and apologize.
Social security lady: Oh Jessie you don’t make too much money. We actually owe you some money. You should be getting a little bit for disability each month.
Me: I want to kiss you. You are seriously my hero. Can you please tell me his insurance will be back on. I have to get him meds.
Social security lady: Yes I’m filling this out now. When you leave here call DCF. They will get it set up.
I skipped to my car! Seriously skipped! Meds are back! We are on day four of no meds at this point.
It took leaving several messages at DCF and I finally got a call back.
DCF: So I have a message to call you. What are you calling about?
Me: I explain the whole situation.
DCF: Well he doesn’t have coverage yet because he doesn’t qualify for social security.
Me: Social security says he does qualify and I resubmitted my paystubs to both you and them. He qualifies financially as well.
DCF: Well I can’t do anything about that because it says he is supposed to be on a SED wavier and the mental health center didn’t do the paperwork.
ME: Well I don’t see why that matters if he qualifies two other ways that have been completed. I don’t care which way he qualifies I just know that my child does not have medications and he must have them.
DCF: The paperwork has been submitted but it will take four to six weeks.
Me: I’d like to request it be rushed due to medical urgency. I’ve heard that can be done.
DCF: It will take at least four weeks.
Me: So you are telling me that my child qualifies for the insurance for three reasons. 1. He has a disability. 2. He is severely emotionally disturbed. 3. We are considered low income. But even though he qualifies in those three ways he is going to go without medication for 4 weeks?
DCF: Yes it takes four to six weeks.
So now we wait… I can promise you it will not take four weeks. I will call every single day until it’s reinstated. I don’t quit. But I shouldn’t have too. Having a child with a disability is enough of a struggle. We shouldn’t have to fight for every single thing they need to meet their needs. It shouldn’t be this hard. But it is.