I never received the promised SSI paperwork updating Noah's eligibility status in the mail so I called Boulder County Social Security this morning and got yet another representative to talk to. He told me that due to the "estimates" that they have calculated for Chris' income for the month of May Noah does not qualify for SSI and therefore his Medicaid will also be terminated starting June 1st. I don't know how they can just "estimate" and that be acceptable for putting Noah in a position where he is without insurance, without therapy, and even equipment benefits. May isn't even over yet, how can they just guess what Chris will make? This also means that Noah's CNA care will also be terminated with Medicaid and he will not have nursing services. They say Noah's SSI and Medicaid will likely be reinstated in July when they "re-estimate" for June. That does us no good when we're without insurance for a month or more. You cannot have a medically fragile child without insurance - you just can't.
I've done literally all I can do, I have talked to all the supervisors there all the managers, I think quite possibly every case worker they have at that office. They all tell me sorry, so sad... that's how it is. I've tried contacting political agencies, I've tried networking, I've tried it all. I'm on my knees literally calling all angels. I don't know what else to do, I'm worn out, I'm beaten down, and frankly I'm feeling beyond defeated. I spent countless hours trying to take care of Noah's affairs each day - his therapy forms, grants, fundraising, SSI & Medicaid, taking him to therapy, working with him and I still fall short. I put everything I have into being his mother and all that goes along with it. And no one could truly understand how emotionally and physically taxing this all is unless you were living it.
Of course as most things go, you can't feel other people's pain so unless it directly affects them in some way it doesn't mean a thing. I am just some poor mom on the other end of the phone that is losing insurance benefits - I could really care less about Noah's SSI anymore - they give it to you and always slam you with an overpayment and ask for it right back, it's become more of a hassle than a help in our lives - but we genuinely need his Medicaid benefits that are unfortunately tied to Noah's SSI. Noah is on the long-term Medicaid wait list but it will take years to get him off that list.
There is a buy-in program I understand for Medicaid starting in July which we'll have to pay a monthly premium for Medicaid - a service that should automatically be provided for Noah that we will now have to pay for to give him security. That sounds like it is our only option at this point - but that still leaves Noah a sitting duck for all of June should anything go wrong. And you never want to be without insurance when you have a child like Noah. A medical crisis could happen anytime - he could need to see a doctor at anytime. He needs weekly therapy - he needs equipment benefits. We just put in a 2nd request for a toilet seat and a sleep safe bed, both of which are destined to be denied when Medicaid kicks him off June 1st.
It just feels like we have this huge weight on our chests and we can't breathe. Chris and I have exchanged lots of worrisome phone calls to each other today, we're both very distraught and upset parents. We're doing the best we can for Noah and we just continually get slammed down. We're just another family falling through a system that is supposed to help us. And apparently there is no net to catch us.
Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.