Wednesday, February 15, 2012


Hello all!   I will be doing a bigger update on Christopher soon.  Right now, we NEED your help! 

While Christopher has been doing well and steadily improving, he still has many medical needs that we have to attend to. Because his medical issues are so complex, he qualifies for something called the Medically Fragile and Technology Dependent Children's Waiver.  This waiver eliminates the income requirements for a medical card for HIM (not the entire family), to cover the things that insurance does not.  While we have primary insurance, we also have HUGE copays, deducatbles, and most of the most expensive items Christopher needs for day to day living are not covered by insurance at all. When you are talking $4000 worth of formula a month, those bills add up quickly.

This waiver also helps to provide nursing hours and our super nurse, Darcey. Without ursing, I literally would not get any sleep.  Christopher alarms, or wakes up, or gets tangled, or, or, or about every twenty minutes while he is asleep. Between seizures, suctioning, silent reflux and aspiration, oxygen needs, apnea, and more, the night shift is almost more active than the day shift! 

The State of Illinois is broke.  I am not even going into that. It is a whole different post. One of their super ideas to cut costs is to eliminate this waiver for children like Christopher!  There are only between 400 and 600 children on this waiver at any given time.  Many are much more complex than Christopher. One thing we all have in common is that if we lose this waiver, we will all have to decide between hospitalizing our children permently, admitting to a nursing home, or keeping them at home and ealing with the financial fallout of catastrophic medical bills and eventually have to go with one of the other two options in the end.  Ironically, once our children are hospitalized, they automatically qualify for a Medical card!  The important fact to remember is that just a room in most Children's hospitals that can handle our kids runs about $55,000 per MONTH.  JUST THE ROOM!  The State spends an average of $188,000 per YEAR on our children currently.

We also have the added benefit of keeping our children at home with their families, where they belong, out of the hospital for minor illnesses that we can handle at home with nursing help, and SAVING MONEY to boot!  It makes no sense why they want to cut our kids other than they see this as a population who will no fight back. 

This is where we need your help.  Please click on the link at the top of this post and sign the petition. It takes all of 30 seconds. 

We also ask that you blog, tweet, and share with all of your friends, groups, churches on facebook, etc.  The State responds to volume not common sense. The more people we have letting them know that they are watching, the less likely they are to endanger the lives of at least 500 Illinois children with complex medical needs.

Two more points that need to be made here:  Last month, the Special Needs Community came together on behalf of ONE child who was given a death sentance by a transplant program.  There were over TWENTY THOUSAND signatures gathered on behalf of that child, and the decision was reversed.  Right now, the lives of over 500 children hang in the balance.  We have less than 400 signatures currently.  Please tell me the Special Needs Community is NOT that fickle., that ALL of our children matter and are loved.  Otherwise, we are no better that those denying services.  If ou aren't part of the solution, you are most definately part of the problem.

The last point is that you do NOT have to be from Illinois or even the United States to sign this petition.  Again, the State responds to volume and for every signature a letter is generated and sent to the Director of Health Services in the State of Illinois, one of the champions of this idea. More than that, there are several other states who are eyeing the outcome of this manuver. Several have already sited the potential loss of the waiver.  If you think this won't affect you, think again.  Hello slippery slope! 

Thank you in advance for your help.  We thank you and the families of the other 500 children this affects thank you as well!



Blogger SA said...

Fabulous post Stephanie, especially the point about people supporting the little girl needing the kidney transplant.

February 15, 2012 at 9:09 AM  
Blogger Happy Elf Mom said...

Hi, Stephanie! Thank you for pointing out you do NOT have to be from Illinois to do something. I saw this on fb before and misunderstood; thought you had to be. Some Senators and what-not will only respond to people in their districts, etc.

Am off to click your link right now. Just even from a strictly financial standpoint (and our kids are so much more than that!) this makes zero sense.

February 15, 2012 at 12:15 PM  
Anonymous Anonymous said...

Stephanie, I've nominated you for a blog award. Please stop by my blog to check it out!!

April 23, 2012 at 11:34 PM  

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