Save the Waiver.

Here’s where i’ve been the past couple weeks.

While i have physically been HERE, as in at home, my heart and mind have been geared towards the battle we are fighting to prove to the Great State of Illinois that our medically fragile kids are worth keeping at home. Illinois is in Legislative Session – and they are tasked with a ginourmous job – fixing the bleeding budget fiasco created by our former crooked governor, and now made worse by our current governor doing a scramble job. The two sides are locked in debate over how to fix the budget – cut spending, or increase income (tax revenue). Obviously anyone who has ever had a checking account realizes that most times, you have to find a blend of the two. Which is fine when you’re talking about “eating out less” and “a 15 cent payraise” being the two extremes you’re swinging between. But what we are talking about here is the lives and livelihoods of people. And while I really do understand the issues at hand, and understand all that has to occur for our state to survive it’s budget crisis, what it boils down to for me is that our waiver is not the place to do it.

I have delved deeper into political things than I had EVER hoped to in my entire life. I admit it. I usually vote based on pictures, colors of campaign signage, or if I like someone’s name. Poli-Sci was nowhere near my radar in high school or college. I just want my little world to be my own little happy place. Until it’s not. And then I get REAL involved. So yeah – the past couple weeks I have been listening to legislative sessions streamed live over the internet. I have tweeted  to senators and representatives. I have called their offices, emailed them til my fingers want to fall off. And the real kicker – it’s not just me.

See, when the “powers that be” decided that cutting out the MFTD waiver would be a good way to reduce some easy spending, they pissed off the wrong group of mommas (and dads!)

We are parents who are used to fighting for EVERYTHING for our kids. We are used to forging paths where bureaucracy and rule-makers have told us no path exists. We don’t hear the word “No” – instead we hear the words “Find another way”. Our kids have lived in and out of the hospital (more out than in for many of them), and we’ve been right at their bedsides fighting for the best care possible, educating ourselves, learning in 3 weeks what many doctors go to school for 3 years to grasp. We battle through sleepless nights, ignore our own illnesses, get up every morning ready to do it all over again – and we do not take No for an answer.

ESPECIALLY not from a bunch of politically aspiring bureaucrats who have NO IDEA what it is like to live our lives.

To take the words from a conversation that occurred last night in our discussion group:

(names are changed to protect the innocent!)

Bob: Well, so far all we are is a group of terrified, confused, tired, pissed-off parents.

Sue: No Bob – we aren’t “just” that. We are strong-minded, willful, determined and not defeated parents that will go to any lengths and fight any battle to keep our kids at home with us where they belong.


so true. It has been a very rough couple of weeks.

It is disheartening to feel like our story, our mission, our heart is not being heard. We are David fighting Goliath. The impression being given of us families on the waiver by the “powers that be” is that we are mostly the uber rich, have piles of expendable cash laying around that we SHOULD Be using to pay for our children’s ridiculously costly care. Some of those “powers” have even implied that it would be better if our kids just passed away. They cannot see the joy and love our kids, complex though they may be, are still OUR KIDS. That they are vital parts of our families, even with the added challenges that they bring. That we aren’t asking for handouts in ANY way.

The vast majority of people on the waiver have private insurance. That insurance, which we pay huge out of pocket premiums for, pays for most of our kids’ care. What most insurances do NOT cover, however, is nursing. Some of you who have read this blog for a while may remember that I was fired from my previous positions due to my inability to focus on both the job and the medical complexities of Kendall. We were in the process at the time of trying to get Kendall on the MFTD Waiver. Ironically – in-home nursing services started 3 weeks after i lost my job. If you go to the website we have set up to educate people about the plight of the MFTD Waiver in IL – you can read story after story about how other families are affected. One couple had to get a divorce (even though they were happily married!) in order to have the household qualify for services. What kind of country do we live in that rewards hard work and good strong marriages by telling them they’re on their own – while freely handing out payouts to those who are not even asked to prove whether they are tax-paying citizens? Our state has begun punishing the hard working, tax-paying, barely making ends meet middle class – and the ones caught in the worst of it are some of the most helpless children.

When this first started heating up, the plan was to just quietly let the waiver expire-129 (the state gets “the waiver” from the Federal Government via a renewal process every few years). When our outrage started to hit the right ears over how THAT was a bad plan (thanks to everyone’s help signing the petition – the head power that was receiving the emails must have realized she was going to need to go with plan B!) – and plan B was put in place. Plan B is what is going on right now.

Under this new budget that the Legislature has approved and is waiting Governor approval at the moment – the waiver will be renewed, but will be restricted to families making under 500% of the poverty line. I am sure that this sounds like an exorbitant amount. For a family of 3 (2 parents, 1 kid), this would be an annual income of roughly $97,000. To cover roughly 50-60 hours of nursing per week, the annual cost of JUST THE NURSING would be $188,000. Now, I’m no math whiz, but that seems to be an upside down number. You cannot physically spend more than you make. Well, you CAN, but that only lasts for so long. (see exhibit A, the IL state budget. which is why we are in this whole lovely predicament).  The point being – a family needs to be making roughly 2000% of the poverty line to even HOPE to break even with the cost of nursing, the cost of private insurance, AND covering mortgage and bills. So while I am sure the politicians think they are being MORE than generous by setting the income caps “so high”, it still doesn’t work.

In no way do any of the families on this waiver feel “entitled” to these services. We have no problem with a realistic income cap, or realistic cost sharing for the nursing services many of us must have to survive. We just need to get the ear of a Senator to hear our real hearts. To understand that our families could be their families in the blink of an eye. No one plans to have a child who needs intensive medical care every hour of every day. It just happens. Sometimes at birth, sometimes via an accident, always unexpectedly.

so what would you do – if it was your child? What would you do if you were faced with the choice to let your child’s care suffer, and keep them home – or hospitalize them permanently? Can you even put yourself into those shoes, imagine having to make such a decision? I know that as moms, chances are very high that at some point – you’ve spent the nite (or a couple nites in a row), up with worry over a fever that won’t break, or the vomiting that won’t let up, or the coughing that sounds like a lung is coming up. You hem and haw over whether you can handle this at home or if its time to go to the ER. You hope that THIS dose of antibiotics, or THIS round of cool washcloths will be the key to helping your poor sick child. And then you breathe a sigh of relief when you feel like they’ve rounded the corner, and life goes back to normal, and you get to sleep in your own bed again. But for families like ours – and the 499 other families on the waiver – “normal” is just a term. IMG_2711 Nights like those ARE our normal. Except in our homes are the pieces of equipment and the medicines they use in the ER, or the hospital rooms. Some people even have ICU level type care happening in their homes every day. And when THOSE measures start to fail to turn things around – stuff gets real. Real fast. our lives are lived at a level of adrenaline pumping speed that TV shows can only attempt to capture.

None of us can ever fathom driving our kids to the hospital, checking them in, then walking out those doors to resume our “normal” lives. But if this bill passes as is – it is a VERY real decision we will all be forced to make.

Could you?


Please help us spread the word. Share this post on facebook or twitter (if you click on the hovering “share” thing to the left hand side it will give you options. If you know who your IL Senator or Representative is – give them a call and tell them you do not support this part of the “SMART Act” of HB 2840. Ask them for a “trailer rider” that would eliminate the section regarding the waiver on pg 81-82. (They’ll know what you’re talking about. And if they act like they don’t – they’re playing dumb. Or they really didn’t do their homework at all, which is even scarier.) Direct them to the website – we have listed tons of info and resources there that show HOW we are willing as a waiver to cut our own costs, which will result in REAL savings for the state. Even if you don’t live in IL – share the website. We just need people to be aware of what is going on. It starts with IL being willing to “let their most vulnerable citizens suffer the consequences”. Which states will follow suit? Why not take away the care they need, and oh well – if they pass away because of it, at least its less money they have to spend keeping them alive? This isn’t the America I grew up believing in. I am shocked at the callousness of many people who we have May-66interacted with in our attempts to be heard.

I’m starting to ramble now. I’ll wrap it up.

Please help us spread the word.

Do it for this girl, who wants nothing more than to just be at home with her sissies, and not in the “hos-bit-toll”.


Do it for all the kids who deserve to just be at home with their families – regardless of diagnosis, prognosis, or how hard it may be night in and day out to give them the care they need.


Do it for all the moms – so tired, so determined, so full of fight because fight is all they have left.


Fightin’ on~


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  1. Wow, this is just the best blog ever on this. Thank you so much for all your help. Let’s keep up the good work and SAVE the Waiver and SAVE our kids too!!