Monday, June 4, 2012

Still Fighting....

Sorry for the lack of posts, again. Blogger locked me out!

Well, the fight still continues for the children on the Medically Fragile and Technology Dependent children's Waiver (MFTD) in IL. Last week, the State legislature passed SB 2840. The Governor is set to sign it in to law sometime this week.

This bill effectively kicked many of the children on the MFTD waiver off, but instituting income caps to qualify. The entire point of the waiver is to WAIVE income requirements for services. Those who are left to qualify are going to have to pay between 5 and 20% of our income - anywhere from $400 to $1200 per month on TOP of insurance premiums, out of pocket costs, and regular bills.

The result of all of this is that many families are going to have to chose between going bankrupt, divorcing, quiting jobs, taking major pay cuts, or putting their children in hospitals. All of this is blatantly illegal under the Olmstead ruling. In a nutshell, The Supreme Court ruled that if services were available in a community setting, and the person WANTS to be in the community, it is illegal to force institutionalization on them. A good friend has written a great article explaining Olmstead for Complex Child Magazine here.

Our next step now is to convince a Senator to introduce a rider bill. This is essentially a separate bill that will say that any changes to the MFTD Waiver in SB 2840 is null and void. So far, we have had no luck.

Failing that, our last gasp are lawsuits. It is pretty cut and dried that we would win our lawsuits just on the Olmstead violations alone, however, the State of Illinois is currently being investigated by the Justice Department for disregarding rulings in several other Olmsteasd cases. They are currently in contempt of court and have no intention of following court orders.

We need help getting the word out to media about the back room deals and sacrificing of these children and their families, for others' personal agendas and biases. If you have any National Media contacts, please send them our way.

To educate yourselves more, please visit

One note here, there are MANY States poised to make the same cuts. California is well on the way. If nothing happens to the State of Illinois, be prepared for YOUR state to act as well.

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Blogger Happy Elf Mom said...

God help these children, is all I can pray!!

I don't get how either "side" can be ok with this, if anything, these programs should be greatly expanded.

We have been on a "wait list" for about 3 or 4 years. Every year we get a letter granting us lotsa funding when there is actually money in the state's account. Nice, huh? And every year we have to update our "plan" to use the nonexistent money and give income info etc.

I feel like I am playing a big game I cannot possibly win, but I play anyway. I can't just not fill out the papers each year, knowing THIS could be our year. Sort of like lotto only my "ticket" is bought with lots of paperwork and useless meetings! :)

June 4, 2012 at 12:52 PM  

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