The State of Illinois and the lives of medically fragile kids with special needs.

We’ve all had the experience of needing to cut our household budgets.  We go, line by line, over each dollar spent and where.

We put that new pair of shoes off until later.  The pair we have now will last a few more months.  Who really needs this many television channels?  Do we really need the cable? We plan to run all our errands on the same day to save on fuel. We nudge the heat lower, dress in layers and turn off the lights to bring those bills down.  Steak becomes hamburger, hamburger becomes beans.  I can save money on milk this month my cracking open a can of my powdered stuff.

Sure, I’d love to provide my family the whole, organic stuff.  But the powered stuff meets their nutritional needs and keeps me within my budget this month.

We’ve had months so tight around here that I’ve done laundry in the bathtub until we could afford the part Reed needed to fix the washing machine.  I could have chosen not to buy groceries that month in order to afford that part, but in the hierarchy of the Hodson Home, the need to eat came before fixing the washing machine.

It’s what made sense.  Having a working washing machine is nice.  Making sure my family is fed is essential.

It was also an excellent lesson in needs vs. wants for my kids. So they had to wear their jeans a day longer than usual.  Bid deal.  I had to put more elbow grease into getting the laundry done.  Big deal.  We were working towards a common goal and we achieved it.

The State of Illinois needs to make some changes to their budget.   On the chopping block?  The Medicaid waiver for medically fragile/tech dependent children.

Virtually every state in the US has a program to assist children who are extraordinarily medically complex and have catastrophic medical expenses, regardless of their family income.  In Utah it’s called the Travis C. Waiver, others may know it as the Katie Beckett Waiver.

Many of these children are on ventilators, have IV lines, or require other medical technologies to keep body and soul together.

Many have private insurance, but their insurance policies do not cover private duty nursing.

This program provides them with dignity and independence, allowing them to live at home with their families by providing them with home nursing care and other Medicaid benefits.

If this program is eliminated, many of these children will only be eligible for Medicaid if they live in a hospital or skilled nursing facility.

If they live at home, they will no longer be eligible for Medicaid, even though it is less expensive to care for them at home.  (How much fiscal sense does THAT make?)

Families will be forced to make tough decisions, such as choosing to permanently hospitalize their children, quitting their jobs to become financially eligible for Medicaid, or giving up custody of their children. No family should ever be forced to make these decisions.

Why am I sharing this with you?  We don’t live in Illinois.  What’s the big fuss?


Simple.  I can’t even begin to count how many times I’ve read of a Utah Legislator supporting THEIR Bill by pointing at another state that just did the exact same thing….regardless of how dumb  it was.

One State does it, it gets easier for another state to do it and another and another…..

Regardless of where you live, supporting families of medically fragile kids with special needs shouldn’t stop at state lines.

Because if you think they’ll stop with just the weakest among us, you need to think again.  Next they’ll come after the kids on DSPD*, and the kids who receive Medicaid via a spend down plan.

While Niemoller’s quote pertains to the activities taking place during WWII, it can be used in the war to keep our kids alive too.    “First they came for the….but I did not speak out because I was not a….then they came for me and there was no one left to speak out for me.

You can sign the Petition to help keep these kids connected to the medical care they need at

There’s a better way to do Medicaid reform.

* In 2011 Utah’s DSPD budget was reduced by $335,900 because it was assumed that there would be dollars found from FRAUD recovery.  (Rep. Clark’s proposal) —-fraud money was not found.   (ahem)   Over 2 million dollars is needed just to keep DSPD in Utah functioning at it’s current levels……that does NOT include any new families for services.   I know a family who has been waiting for 14 years now.


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