Noah's Miracle : Medicaid Terminated... AGAIN!

I wonder just how many times I've blogged exactly about termination of benefits... it seems like its a habitual thing. I used to think it was a mistake, but now it almost feels purposeful that it happens so often. We're not the exception however, but rather the norm. Loss of benefits for lack of reason happens frequently to many families. And I'm sure they are just like me spending literally an entire day on the phone trying to get it straightened out, begging anyone who will listen to help you as you bounce around agencies, SSI to Medicaid to a agency called Maximus (who manages certain Medicaid cases for Medicaid), back to Medicaid, Back to Jefferson County Early Intervention Services, back to SSI again, all for everyone to tell you, they have zero clue and no one can help you. It seems that everyone's explanation this time for why Noah was terminated was because I ignored a notice in the mail - which came looking much like insurance advertisement - lots of brochures and pamphlets, with a letter of course that I didn't bother to really read in my busy day saying that if I failed to respond that Noah would automatically be enrolled in something called Accountable Care Collaborative (ACC). During the transition of automatically enrolling Noah, without my consent (since I failed to respond and tell them not to) kicked Noah off of Medicaid during transition. Noah has actually been without insurance since the first of May, but I wasn't notified until his supplement service called to inform me they couldn't bill Medicaid because he had been terminated... surprise! And of course the bonus was Noah had a doctor's appointment today as well... not the best timing.

After a very long day advocating and really being more "firm" than is in my nature I am told Noah's Medicaid has been reinstated and will show active within 24-48 hours again. I of course will still have to call to "dis-enroll him from Accountable Collaborative Care (ACC) when the system shows his Medicaid has truly been restored. My mother always told me you gather more bees with honey. But when you are dealing with government services no amount of honey in the world can sweeten them up to help you. Sometimes you just have to flip the "Bitch Switch" to be heard. Which really is terrible thing to have to tell special needs parents just starting out on the journey. But it's true. If you are too quiet, too nice, nothing gets done. And I hate more than anything that as special needs parents many of gain this really unfavorable reputation for being truly difficult people when all we are trying to do is advocate for justice for our child.

I had the opportunity to attend a Anat Baniel Special Needs Parent's workshop for Noah. As many who follow Noah's journey know, we have been doing ABM/Feldenkrais therapy with Noah for sometime.   It's has been and continues to be a therapy that has proved to be very beneficial for him in his life. And one that we feel is essential to helping him continue with his physical progress. We originally had applied for Noah to do a demonstration with Anat during the workshop, but ultimately he wasn't chosen. They used a child around the age of one. Although she had a scary diagnosis at birth, appeared to be meeting all milestones and was beating all birth predictions. I spoke to lots of parents who felt really uncomfortable with the fact they were using a typical developing child to demonstrate on. While at the same time we were relieved for that family, I think we all were longing to see a child with some sort of physical disability or limitation.

The workshop was emotional on many levels, at times it was a room filled with some really wounded hearts over our special needs children, we all share the same pain and are walking the same road. Anat has amazing insight, she is a truly gifted thinker and left me with many things that were valuable in helping Noah daily. Anat is kind, sensitive, genuine and straight to the point. So many of us are so desperate to "fix" our children that we forget the main goal is to "connect." I would recommend to anyone who has the opportunity to attend one of her workshops to do so, it might just be the fuel you need to keep going.   Hopefully, one day Noah might have financial opportunity to be able to go to California to see Anat and her team. For now, we'll just try to keep doing what we're doing since we can't afford the big price tag that accompanies it.

I took Noah out to the mall yesterday, for some one-on-one time and left his brother with his grandmother for a little bit. It was nice just to be with my big buddy and give him all my complete attention. I bought him a new fishing hat for the summer since he's grown and some new swim shoes for warm water therapy. I tried on some clothes, even knowing I couldn't afford to buy them, he laughed and giggled at me in the dressing room. And I must say Macy's was amazingly awesome. The only store we went in that actively made a point to ask me if they could help me or assist me or if I needed anything at all. Most people everywhere look past Noah and I.   I've grown rather used to it in a way.   So it's always such a kind surprise to feel like the world sees you and cares about you. Thank you Macy's for making me feel like a valued guest in your store, even with an apparent disabled child by my side! I'll likely go back to that store, even if I don't need to purchase anything at all, just because they were so friendly to me.

"I have different hats; I'm a mother, I'm a woman, I'm a human being, I'm an artist and hopefully I'm an advocate. All of those plates are things I spin all the time." - Annie Lennox

Love,