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 change.org.

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.

About Tammy and Parker

Special Needs Blogger, and homeschooling Mom, heavily involved in advocacy for all kids with special needs in Utah.

Comments

  1. Thanks for lending your fellow parents and kids in Illinois your support!!! You are so very right. Illinois–and all states–need to really think this through carefully and make decisions that are fiscally responsible in the long run.

  2. Stephanie Wyatt says:

    Thank you so much for your support Tammy! The State of Illinois already ranks 47th in their series for the disabled. One more thing that we haven’t even touched on yet is that the Astate is also targeting inpatient care facilities for the disabled. They just announced that they were shutting down Jacksonville Developmental Center, an inpatient facility. Those people have lived there for years because they do not qualify to live in group home settings, eitherr because of the nature of their disability or behavior. The State’s solution? Send them to group homes which haven’t even been established yet. DSC closes in October.

    My guess is any nursing home facilites, such as Schwann Special Care for Children are next. Then what??? The State is relally saying if you have a disability, we don’t want you here. Pretty soon there will be no place to run.

    We are all in this together. Thank you!!!!!!

    [WORDPRESS HASHCASH] The poster sent us ’0 which is not a hashcash value.

  3. Tammy, Thank you so much for breaking this down and educating us. I will share this with my audience, too.
    Sandra recently posted..Intellectual Disability- The News You Need This Week (2/14/12)My Profile

  4. As a resident of IL parenting two technology dependent children AT HOME, this issue hits very close to our hearts. Without the waiver our daughters would be cared for in institution and/or we (a middle class family) would lose our home. Tammy, I’ve followed yor blog for quite some time and appreciate your support.

  5. As the parent of two medically fragile, technology dependent children this issue hits very close to our hearts. As a middle class family facing extraordinary medical bills, without the waiver our daughters would either be living in an institution or we would have lost our home and employment. Tammy, I have followed your blog for years and appreciate the vote of support.

  6. Holly Thompson says:

    As a parent of a medically fragile child in IL, I feel your pain. We have recently gone through a hearing to plead our case to keep our hours. Our son has a trach and has Congential Central Hypoventilation Syndrome (CCHS). His brain stops sending the signal to breathe when he goes to sleep or concentrates too hard on something. He has been going to pre-school and will start kindergarten next year. They are thinking that because there is a school nurse, who has no trach experience and could never reach his classroom in time if his trach was plugged or came out, we do not need a nurse at school because he is not on the vent during that time. What about nap time? If we do not win the appeal, my husband will have to quit his job to go to school with our son because our medical benefits are under my job.

  7. Tammy, Thank you so much for helping us get the word out there! We really appreciate all the help that we can get. Our daughter would be devastated if we couldn’t take care of her at home. She’s extremely bright, makes the honor roll at school, is very verbal, but she has a health condition that requires a constant monitoring and supervision. I couldn’t imagine if we weren’t able to do that at home anymore. By the way – your son is adorable!!

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