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Apraxia and Medicaid

By on Sep 2, 2017 in Apraxia | 1 comment

I just did the math and it’s been about a month and a half since we figured out that our three-year-old daughter Rory really does have apraxia.  It feels like way longer than that because we have learned so much, done so much, and while the progress is still slow, I feel like Rory has made more progress in that time span than in the previous year and a half she was in therapy.

As of my last post we had just had our evaluation with Dr. Jonas and we had just gotten our preliminary approval for the Gardiner scholarship.  Our weeks since then have been focused on getting Rory approved for Medicaid through Florida KidCare and their CMS (Children’s Medical Services) Insurance that is specifically for children who need more medical help than typical children.  I’d originally heard about CMS from Rory’s Early Steps therapists, who basically described it as a “golden ticket” for therapy when I was desperately trying to figure out how I could get her the help she needed (they also implied that an autism diagnosis was one of the few ways to get it, which we briefly considered as a possible diagnosis, but after going to the Developmental Pediatrician and having the ADOS test done, autism was crossed off the list).  We never thought we, as a middle class family, would qualify for Medicaid.  But with therapy costs of $2,640 per month, we also had no idea how we were going to pay for it all, even with the Gardiner scholarship, which would cover about a third of that.  After, to put it bluntly, half-assing Rory’s therapy for a year and a half, we needed to give her the extensive therapy her condition demands.  Thankfully CMS was created for those kids who have extraordinary needs, and even more thankfully, it seems that apraxia is considered extraordinary enough to warrant this coverage.

I will start by saying that the quest for Medicaid is essentially a full-time job, so if you ever apply, be prepared to stop everything you’re doing and bend over backward, forward and every which way to jump through each and every hoop they hold up. I can’t say this for certain, but I’m guessing that the application process is designed to weed out the faint of heart.  And I’m also guessing that it is successful with many applicants!

I applied through Florida KidCare, which is the agency that oversees Medicaid for children in Florida, somewhere around July 10th.  To give you the happy ending first, Rory was approved August 18th for coverage starting September 1st, but it seriously feels like a year went by in that time period!

While I will spare you most of the details, I will say that income verification was the biggest challenge, as we are both self employed, so we don’t have pay stubs to submit.  Not to mention there is no hard and fast guidelines posted anywhere for how much income is too much income, so we were going into this completely blind knowing that we probably made too much but hoping that we could squeak in under that magic, invisible number.  We had to go back and forth a few times with self employment letters, rental income letters, etc., having some rejected for silly reasons like saying “our rental income” instead of “Jennifer McKay’s rental income.”  (They are super picky with their requirements, so if you find yourself in my shoes some day, make sure to follow instructions very specifically!)

Just when I thought all was good and Florida KidCare had finally approved our documentation, we got a call from a lady with Medicaid essentially asking us to start the income verification process all over again, but with DIFFERENT, more stringent, requirements.  I was nearly in tears at this point because I didn’t think it was possible that we would qualify, but my wonderful husband took the phone away from me, talked to the woman who called, explained what we had already submitted, and told her that we would send her everything we’d already sent KidCare.  I had to create an account on THEIR system (which apparently doesn’t like Firefox, so I finally tried on another browser and got it to work) and then despite having everything saved as one PDF, I had to break everything down into files that were 1MB or less and upload them one by one because the system was ancient and cranky.  The good news?  I never heard from her again!  Apparently she bumped us back over to Florida KidCare without even bothering to call us back, and we were back in business.

From there Rory was assigned to MediKids, which was still not where she needed to be (we were still shooting for the magical CMS) so I talked to KidCare to find out what needed to be done, who told me she needed to qualify via CMS’s screener and someone would call me.  Instead of waiting I immediately called CMS directly and a very nice woman was able to complete the screener over the phone (which was super easy…does she need more medication than most children, more medical care, more therapy…no, no, YES!!!) and she assigned us to CMS.  Our last step was setting her new primary care doctor (ours wasn’t a provider) so I found out from our “apraxia mentor” friends (who have a daughter with apraxia who is 2 years Rory’s senior) who they go to and called to set ours as the same one. (I am not above being a copycat when there is a track record of success!)

Eight million phone calls, fifty million scanned documents, a thousand new gray hairs and countless tears and nightmares later, I think we finally are approved.  Of course when I actually went to USE it yesterday there was a delay in our coverage (despite being told by everyone I’d talked to that she had coverage September 1st) and I almost had a heart attack talking to KidCare AS I walked into therapy.  But I finally got in touch with CMS and they told me that yes she has coverage, it will just be a few more days until she shows up in the system.  So fingers and toes crossed that I can finally put this process behind me and we can moved forward with our golden ticket insurance.  It should pay for ALL of Rory’s therapy, and also medical, dental and even vision if we want to use it.  I still feel like the rug might get yanked out from under me, but I am so, so grateful that this exists.

Rory started last Friday at her new therapy center, and I am hopeful that we are finally in the right place to address the apraxia and all of its buddies that appear to be along for the ride (yes, I’m talking to you, sensory processing disorder, hypotonia and retained primitive reflexes! But more on those later.)  She is currently doing three hours of OT (occupational therapy) and two hours of speech, but I am hoping to get that third hour of speech added in soon when their schedule equalizes a bit.  At this point, there is a lot of overlap between the two disciplines of therapy as they work on getting Rory’s {sometimes…ok, more than sometimes…wretched} behavior in check and build trust and rapport with her so that they are able to push her to do the activities she needs to do to make improvements.  I am trying to have faith in their system since our aforementioned apraxia mentors have had their daughter here for the past two years and she has improved so much (again, no shame in being a copycat).

Of course I doubt every decision and constantly wonder if we are doing the right thing, but as I said, I am just trying to put some trust in the new therapists, take a deep breath and relax.  Who am I kidding, I will never relax!  But that’s the latest.  Finding time to blog is always a challenge, but I think it’s cathartic for me and important for anyone else this might benefit to get it out there into the universe, so I will try to blog more sooner than later about all of the things going through my head at lightning speed every day.