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Call to Action: Save the Waiver

A call to action for Illinois citizens:

The Illinois legislature recently passed SB 2840, a Medicaid bill that will result in drastic, life-changing consequences for families using the state’s Medically Fragile Technology Dependent waiver.

I truly wish that was an exaggeration, spin to make you sit up and take notice – but it’s not. If the bill continues in its current form, as many as 488 children will take permanent residence in skilled nursing facilities, hospitals or institutions.

The bill would require families on the waiver to pay 5% of their income as a “cost share” for the program, and completely cuts families making more than $95,450 from the program. As a point of reference for you, the average yearly cost for one child on the waiver is $188,210. Families simply cannot afford that kind of care, even if they make “a lot” of money. (even $95,000 a year won’t put a dent in $188,210)

What about private insurance? First, it’s important to know that the vast majority of private insurance companies do not cover the cost of in-home care. Second, the waiver is a payer of last resort. That means it picks up the tab where other insurance leaves off – so even if these families are privately insured, they are still facing an average of $188,210 a year in addition to any private insurance payments/premiums to keep their children from living the rest of their lives in a hospital or a skilled nursing facility.

This is the kind of measure that seems reasonable on paper (and certainly panders to the “I have to pay for MY care, so you should, too” mentality) but in reality, it simply is not. Families whose children qualify for this waiver have been scrimping, saving, and sacrificing since their children were diagnosed. Parents, in many cases, cannot even go to bed at night if there is no night nurse to assist, much less leave the home in orderĀ  to contribute financially. This is an incredibly difficult waiver to qualify for, and the families who use it are truly in need of the help it provides. These are children who are literally technology dependent – they have trachs, feeding tubes, and other medical supports. Even if they are also privately insured, there are many expenses not covered by private insurance or Medicaid – costing these families $10,000-30,000 a year just in out of pocket expenses.

Many studies comparing the cost of in-home care to institutional care have proven, time and again, that in-home care is vastly cheaper. It’s not even close – we’re talking tens of thousands of dollars per person per month cheaper to live at home rather than an institution. Yet, institutional care comes at zero additional cost to the family, while those fighting to keep their children at home – where they belong, where it is cheaper for the state – will pay 5% of their income, a price most families on the waiver simply cannot afford.

I am the first to admit that budgets need to be balanced, and states need to be fiscally responsible. This is absolutely not the way to do it.

So, if you’re an Illinois resident, what can you do?

Contact your legislators – and contact them now. The clock is ticking and there is very little time left for the legislature to pass a rider to change this section of the Medicaid bill.

Here is a link to where you can find contact information for your legislators.

What can you do? Call and email. Let them know this is not only costing the state more money but tearing families apart.

State your case, and here’s the ask: a rider bill for the MFTD Waiver portion of SB 2840. There is still time to help these families, but you need to act today.

Make your voice heard!

For more information, please check out the Save the MFTD Waiver website.

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