4th Birthday Photo Session

4th Birthday Photo Session

Monday, April 30, 2018


Things are changing in lil' Andi Bean's world.  When we moved here over four years ago, we learned of a state-run program called 'Katie Beckett's Deeming Waiver', and were encouraged by multiple medical sources to apply.  Katie Beckett deeming waiver is Medicaid for medically fragile, medically dependent kids - like Andi.  We jumped through the flaming hoops over three years ago, and were granted access to Medicaid.  For us, it paid for things that our insurance did not cover.  Mainly, Andi's hearing aid ($1500.), and more importantly, her three hours of outside therapy services she has received each week: physical therapy, occupational therapy and speech.  These services have been critical to Andi's success.  Her walking has strengthened so she's no longer running into the walls.  Her motor planning is good, although her visual spatial perception still needs work.  Lastly, her speech has improved drastically.  People no longer ask me to translate every single statement she utters.

We received notice that her yearly renewal, which met denial and we appealed with additional paperwork from both her pediatrician and her therapists, has been ruled a final determination of denial.  

So, that means, we'll be out of pocket for almost all of her services, as her medical coverage really doesn't cover shit for a kid like Andi.  Keep in mind, Andi hit multi-million dollar baby at a mere 5 months old.  Really, four months old - but let's just push that out a few extra weeks of hospitalization.  To get Andi to catch-up or compete with peers, it has taken a minimum of 12 hours a month outside of school.  I believe in her IEP, she was allocated several hours a month as well.  It takes a lot of work.  It takes a lot of time.  It takes a lot of money.  

So, it needs to be said, she is the face of the medical cuts caused by a new administration.  This is who is effected by  your $20. a month of social services.  Yes, I make a good living, but, you're really asking me to afford more than a mortgage payment to keep Andi in therapeutic services?  Seriously, 200-300. a session, 3 a week, let's just go cheap on that and estimate it to be 600. a week.  That's $2400. a month I'd need to cough up.  Between shitty insurance that we pay out of the ass for (sorry for the vulgarity Dad) but we pay money just for the coverage, doesn't mean the coverage is any good.  And let's just recap -- we did a year of dual company insurance... they only helped each other pay the bill, not help us pay less.  It's insane.  So losing this Medicaid, will impact Andi's progress, due to affordability.  Is that fair to Andi?

Luckily, Andi has a lot of interest.  We're going to try to find her singing lessons, as she wants to compete on The Voice; Tai Kwon Do (sp?) for balance and discipline, and swimming lessons for core strength, and Brownies/Girl Scouts, for the hope of making some true friends -- as most peers don't truly embrace Andi as they don't fully understand her.  Additionally, the ENT is wanting us to consider switching Andi from a typical hearing aid, to a bone-conduction hearing aid (BAHA), which is according to the audiologist, given her type of hearing loss (middle ear), this switch would greatly improve her hearing.  They want to have us back for comparison testing.  Surgery like this, sounds expensive, and our shitty insurance likely won't cover much.  What's that look like, $30k?  $50k.  I mean, do you have that kind of cash to pay for that?  I know I don't.

So, I share all this, because most readers know Andi.  And knowing Andi, means when you go to vote, you might be more inclined to support services that support kids like Andi. I am not here to get on a political platform.  Just trying to personalize the ramifications of your vote.  What really matters to you?  I know for many of you, Andi is your only connection to this world. Embrace that thought.

Andi will be fine.  In fact, she'll probably thrive with the change in her weekly dynamic, challenging her in ways that traditional therapy can't.  But Andi isn't the only one effected by these cut backs.  Please keep that in mind.  This is just the tip of the effected of your decisions.  I challenge you to consider that.  Embrace that.  As I can name a handful in my family's small circle alone that support these cuts.  ANDI is who is effected.  Andi and her classmates.  This is the reality of the situation.  This is that level of humanity you fail to embrace.

Eat it.  (and yes, Dad, I edited that for you!)  

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