Save the MFTD Waiver!

The 2012 battle to preserve Illinois' Medically Fragile, Technology Dependent Waiver

The Parenting Penalty

Today we want to introduce everyone to the idea of the Parenting Penalty, a radically unfair system of punishing responsible parents.

Take a look at this chart, which compares the costs of parents who keep their child with medical needs at home to the costs of a family who has institutionalized their child:

Costs for Child Living at Home 
(MFTD Waiver)
Costs for Child Institutionalized in a Hospital
Cost to State  $15,000/month$55,000/month
Cost to Family 5% of income plus private insurance premium and copays  $0
Additional Family Expenses  Uncovered meds, equipment, supplies, modifications, etc. $0
Income Cap $95,450/family of 3 
(500% FPL)

Simply put, the Parenting Penalty in Illinois severely penalizes responsible parents who do everything in their power to keep their children at home. 

  • The Parenting Penalty cuts off families who work hard for a living and earn more than $95,450/family of three, even though it is impossible for almost all of these families to afford the enormous expense of home nursing out-of-pocket.  
  • The Parenting Penalty forces low income and middle class families who are already struggling to pay really expensive premiums and copays, a full 5% of their income.  
  • The Parenting Penalty forces families to pay for medically necessary supplies, equipment, and other uncovered expenses out-of-pocket.  

And on top of all of that unfairness, the Parenting Penalty imposes these penalties on responsible parents who save the state an average of $470,000 a year by keeping their children at home with assistance from the MFTD waiver. 

Meanwhile, children living in hospitals and institutions--even if their parents are millionaires--get 100% free care with no income caps, premiums, copays, or additional costs for supplies and equipment.  

Pretty unfair, isn't it?  Responsible parents who save the state thousands of dollars get penalized by the Parenting Penalty.  Parents who give up their children to hospitals and institutions get totally free care even though they cost the state thousands of extra dollars a year.

Let's look at how this impacts one of our families.  We'll call them Bob and Sue to protect their identities.  Bob and Sue have a child with a trach on the MFTD waiver.  We'll call him Johnny.  When their son came home from the hospital several years ago, Bob and Sue knew one of them would have to quit working to care for him.  

Since Sue carried the family's private insurance, Bob quit his job and stayed home with Johnny.  They could have taken the easy route--have Sue quit her job and rely solely on Medicaid for Johnny's care--but they did the financially responsible thing and maintained their private insurance, saving Medicaid thousands of dollars since private insurance picked up the bulk of Johnny's expenses.  Even when Sue was laid off, they paid $1200 a month for COBRA to keep their private insurance, saving the state tons of money.  

Now let's see how these incredibly responsible parents are being penalized by the Parenting Penalty.  They are both working now, and it is only because Bob took years off from work to care for Johnny that they fall slightly under the income cap.  But they will still have to pay 5% of their income--more than $400 a month--to remain in the MFTD waiver program.  This is on top of their private insurance payment and tremendous out-of-pocket costs for equipment and supplies not covered by private insurance OR Medicaid, such as Johnny's $5000 carbon dioxide monitor.  

$400 a month may not seem like a lot, but for Sue and Bob, it is the money they planned to spend for their older child's college tuition.  And speaking of their older child, once she leaves for college, they become a family of three and are over the income cap, meaning they will be cut off the MFTD waiver completely. Then they will be on the hook for about $100,000 a year out-of-pocket just for nursing care, which they most certainly will never be able to pay.

Bob and Sue are the kind of people who believe in working to support their family.  But if they work extra hours to help provide for their children, they will get cut out of the MFTD waiver.  In other words, Illinois is actively discouraging them from working, making them MORE reliant on the state.

That is the Parenting Penalty in a nutshell.  It's a ridiculously unfair, fiscally irresponsible, counterintuitive penalty for responsible parenting.  It makes parents quit their jobs, drop their private insurance, or cut back work hours.  It makes parents hospitalize or institutionalize their children because that is the only way to make ends meet.  

It's just about the worst most backward policy you could come up with.

Let's end the Parenting Penalty once and for all.  Reward responsible parents who save the state money instead of penalizing them.

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