For those of you who have not seen me plaster this all over facebook – or those of you who have but don’t understand it – I am hoping that this explanation can help move you to take action and sign our petition!
Basically here’s what is going down:
The state of IL has some major budget issues. This could be because our former governor decided to gamble away the tax money coming in, or just take it for himself, but either way – they have no money. So – as any good responsible entity would do, they are looking for ways to cut spending. And they decided that the best way to carve some extra money out of their budget would be to take it away from possibly the most vulnerable group of all – medically fragile, technologically dependent children. There are about 500 kids in IL who receive a waiver for Medicaid services based on their medical complexity. Basically, these kids require such a high level of medical intervention to stay alive every day that without this waiver providing nursing, access to services, help with some medical/drug coverage that primary insurance doesn’t cover – they would live in a hospital setting.
Kendall is one of these kids. I searched and fought for the better part of a year to get this waiver in place for Kendall. And once she received it, her case manager was appalled that it had taken us so long to get it. She has told me that Kendall is one of the least serviced yet most complex kids on her caseload. We specifically try to be as complacent as possible – even though we could push for much more in the way of nursing hours. We don’t want to be a drain on the system simply because Kendall qualifies. We just want what we need in order to keep our family functional, and keep Kendall home as much as possible. Part of this waiver also provides help with some of Kendall’s medical bills and a few of her monthly prescriptions. It’s not a lot, mostly because the most expensive of Kendall’s medications every month are “black-listed” from medicaid (meaning there is such a high risk/benefit ratio that they will not pay for that med, but would pay for a similar substitute. Except there are no substitutes for these!) We are EXTREMELY lucky to have good insurance through Ben’s work – but they do not cover private duty nursing, they do not cover 100% of her medical bills, and they still like to drag out payments on the stuff they DO cover. Keeping up with insurance for a kid like Kendall is pretty much a part time job in and of itself. Add in the rest of the medical paperwork, the school papers, the nursing admin stuff, the appointments – oy. That’s easily 40 hours a week. And that’s not even including the actual CARE of Kendall!
Anyways – all of that to say – this waiver is literally THE only thing that is keeping our family together. Keeping Kendall out of the hospital on a much more frequent basis, keeping Ben and I (mostly) sane, keeping us out of bankruptcy. If this cockamamie plan of the state’s goes through, and they yank funding for this waiver, we would be forced to decide to either permanently hospitalize Kendall to receive the medical care she requires (and keep the waiver in place for her to take care of that bill), or attempt to handle her heavy medical care on our own, and lose the nursing hours, the extra waiver help, and STILL likely end up with more hospitalizations because as much as I like to play nurse on TV, i am not one.
and as crazy as this would be for OUR family – there are 499 other families who would be equally, if not more, affected. Beyond the fact that it is appalling to think of taking the money from this vulnerable population, the fact of the matter remains – this would not save the state a single red cent. Hospitalizing kids like ours cost a HECK of a lot of money. It is ALWAYS better/cheaper/smarter to keep these kids in the home setting, receiving care in their own home, not being exposed to hospital germs, dealing with locking up valuable hospital resources dedicated to the 1-1 care most of these kids require.
So I am asking you all – PLEASE click on the link above. It takes less than a minute to fill out your info (you can check at the end to keep it private, and still have your name counted) – and you DO NOT have to live in Chicago, in IL, or even in the USA. We are aiming to have 1000 signatures to present to the board making this decision in the next few weeks. Ideally, we’d have even more. REALLY ideally we would be able to have the same public outrage against this that I have seen other issues get. It IS outrageous to think of – mostly because of the upheaval to families that it would cause, and STILL not really help bail our state out at all! It would be a huge waste.
As an added bonus – or heck, a MAIN selling point if you’re like me and have a slight problem with authority – EVERY SINGLE TIME someone signs this petition, an email is sent to the Director’s email inbox. I personally get a warm fuzzy feeling having her receive multiple emails every hour reminding her of what a stupid idea this is and how many people think it’s a stupid idea.
Affect change. Be a part of a revolution. Make a difference. I promise it’s easy and painless. If you are getting an error message – PLEASE keep trying. It just means that a lot of people are trying to sign it at once – and that is an awesome thing! But your name WILL make a difference! And after you sign – share it! Share it on facebook, share it on your blog, share it on twitter. OVERLOAD that poor lady’s email!!! Stand up for kids who can’t stand up for themselves, and be a voice for families who are so overworked that they don’t have a voice left.
Thank you thank you thank you – from the bottom of our hearts.