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Thursday, May 6, 2010

An Open Letter to Children's Rehab Services and Arizona Physicians IPA:

Dear CRS and APIPA:

I am the frustrated mother of three children--they're all fabulously gorgeous and clever, but two of my three have a form of muscular dystrophy called Spinal Muscular Atrophy.

My 2-year-old twins have SMA, which means that they can't roll, crawl, or walk. They can sit upright for a short period of time, but a sneeze will knock them right over. Here in Arizona, they qualify for a variety of services based on their diagnosis--including AHCCCS (Medicaid), Arizona Long Term Care (ALTC), the Arizona Department of Developmental Disabilities (DDD), and Children's Rehabilitative Services (CRS).

At this point in his life, Kyle ("the boy twin") should be exhausting me everyday with his energy--running to and fro, being mischievous, and getting dirty. He can't, though, because he is not self-mobile. And at this rate he never will be.

You see, I've been working to get him his own set of wheels since last summer. A kiddo with type 2 Spinal Muscular Atrophy at his age can absolutely operate a powerchair on his own--I know it, because I've seen him do it, and I have home video to prove it. I've provided AHCCCS/APIPA with various published studies, letters of medical necessity, and dozens of pages of other documentation explaining and supporting why this toddler needs and deserves a powerchair of his own.

APIPA is his secondary insurance--we pay a mint for primary insurance through my husband's employer, who covers 80% of the cost of his chair. So far the remaining 20% of the cost of his powerchair is still pending approval from APIPA and CRS. Our primary insurer has already sent approval to cover their 80% of the cost.

The first APIPA denial was because the wrong ICD-9 code was used in paperwork from his doctor. The second denial was because Kyle's claim needed to go through CRS--even though he was denied membership to CRS last year after I applied for him. And then we got a random and confusing letter from CRS suddenly saying he was approved for CRS services. And then his request for a powerchair was finally denied this week for the third time because we didn't go through CRS for our request.

Are you confused? Because I am. Do you think I would waste my time casually asking and appealing and re-appealing for something that he didn't need? Perhaps I have nothing better to do than this? Because I have one child with asthma and two others who require constant attention, not to mention the administration of meds, plus stander time and Cough Assist, and have regular appointments to schedule and keep with neurologists, pulmonologists, pediatricians, orthopedic surgeons and gastro-enterologists, plus physical and occupational therapists, not mention a half dozen meetings with their new special needs preschool. I spend my "down time" researching ways to keep feeding tubes out of them and how to get them to spend more time in their AFO's and standers and hey maybe in my extra time I might fit in some stretches to prevent their knee and ankle contractures. Do you think I have time for your bureaucratic nonsense? As a taxpayer, I resent that you used this many stamps to send me denial letters when you could have just called me to determine what our situation was.

I need a hero there at Arizona Department of Health Services. I need a hero with some common sense and the power to make decisions and make this headache go away. Because what I haven't told you yet is that Kyle's twin sister, Lauren? You've already approved and paid for her powerchair and he has the exact same diagnosis and the exact same insurances. She's been sporting her new wheels since January. So how about we straighten Kyle's chair situation out, or maybe YOU can be the one to explain to my boy why his sister can go off and do whatever she wants to do while he has to ask his mother to pick him and carry him from one activity to another. And then you consider how his mother is going to have the time and money to schedule her own physical therapy sessions (thrice weekly) because of the daily physical strain of caring for twin babies with this debilitating disease.

And when you're done explaining, and paying, and considering, maybe you can help me figure out a way to trade my fancy top of the line minivan for something that can transport two powerchairs.

I know the saying "life isn't fair". But I've given up my entire life for my children (nope, this was not my Master Plan--I did have a lucrative career in IT back in The Day), and their disease is a hundred different levels of overwhelming. I am sick of wasting my time and falling through cracks and making pointless phone calls. What I do not need is one more schmucky, ignorant customer service rep of yours to get fucking condescending with me. I didn't ask to battle anyone, but you make NOTHING easy. What are the chances that one of you will read this and make my year? Probably no chance, I know. But I do feel better having dropped an f-bomb and pretending that you've read it.

The Obnoxious Mother of the Month

If you happen to be a friend reading this, consider copy/paste Tweeting this message:
Dear @AZDHS, Your bureaucracy is keeping a little boy without the equipment he needs. A little help? @GovBrewer


  1. I posted it on Twitter and a couple other message boards where I know the members have Twitter accounts.

    I hope it helps spread the word a little!

  2. Thank you, Lorie. ALL help and ALL support is appreciated. It Takes A Village to talk me down out of hysteria sometimes. :)

  3. As a govt employee, I know how ridiculous things can be. You are not an obnoxious mom, just a bad ass one. Wildcat at heart!

  4. I retweeted. Hope you can get the help you need. This is so insane! Have you talked to your congressman yet?

  5. Oh honey, I hope you find a hero. I really do. You are far from obnoxious, you are such a fabulous mom, just trying to do the best for your babies.