This week I've spent approximately three hours each day on the phone dealing with SSI, Medicaid, Therapists and Equipment vendors, really without much resolution to anything. SSI has decided that Noah is no longer eligible for SSI based upon figures they claim to have received from the Department of Labor, even though Chris' paycheck stubs reflect something entirely different. In addition, they still have not done anything with the numerous appeals and requests for informal review that I have submitted in regards to multiple overpayment determinations that we disagree with, that have been outstanding for as long as six months. They claim our case has a new caseworker assigned to it, hence the delay in action and review, however this is the same caseworker that we've had since at least August of 2010. They also denied receipt of many paycheck stubs despite the fact that I have fax confirmations and certified mail receipts to indicate otherwise. And they tell me I will never receive written confirmation of any debts or monies still outstanding on any overpayment dispute once they decide to get around to working on my requests for review. Since this determination, Noah's Medicaid will also be cancelled effective 2-29-12 unless I can get them to fix their error, although they warn me there will likely be a lapse in coverage until they determine and review his eligibility. I know that Noah is still entitled to SSI benefits and that an error has occurred, I just am simply having a difficult time getting anyone to correct the mistake.
Medicaid also did not approve Noah's PAR requests, so he was unable to attend physical or occupational therapy this week and we said goodbye to the Stingray pediatric stroller/wheelchair that was on loan from an equipment vendor. I also called to figure out what I could do about our denial on the toilet seat, Medicaid claims that the equipment vendor failed to properly document Noah's need which resulted them making a determination that Noah did not need a toilet seat and I was simply "a lazy parent on Medicaid services who didn't want to potty train a normal child." They told me they need a letter from a doctor "written at a 3rd grade level" outlining Noah's exact disability and all that is wrong with him for them to consider equipment. When I called back to tell them back today to see if I had to appeal or submit a new request, I was now told that the equipment vendor and Noah's doctor would likely need to do a conference call with Medicaid, and that I may or may not have to appeal, but they couldn't give me advice on how to proceed or which way would be better to either resubmit a request or appeal.
It's truly unbelievable that we have to go through so much to get Noah help and services. It isn't just hard enough to have a special needs child that cannot walk or talk that I have to care for on a 24 hour basis 7 days a week, but I have the added stress of trying to deal with all these other agencies that are doing all they can to creatively get out of assisting him. We've lost our privacy, as I have to explain to each therapist how Noah is doing, how he got a pea size bruise on his head, why his skin is dry, why his face is red, asked how much does he weigh now, how tall is he... when did he last poop, how's his eating... you constantly feel like you're under a microscope even though I am caring for Noah with every fiber of my being and doing all that I can to be the most incredible super-parent I can be to him. There is nothing NORMAL about our lives - nothing. It's been stolen, all of it.
No one calls to ask how we're doing, friends... family... well - where are they? Only two neighbors came to my door with cards to uplift me for my birthday, help me when we got buried with nineteen inches of snow. Everyone has moved on, our lives are too complicated, who on earth would even want to deal with half of what we deal with? Some days I dream of how we can find our way back to how life once was - the way things were supposed to be before our lives were forever flipped upside down. I would never want anyone to walk in my shoes, what a painful walk it is.
Love,
Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.