Save the MFTD Waiver!

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


We do not currently have any legislative advocacy campaigns. The below information is from our final 2012 advocacy campaign.

Here's how to participate in our Legislative Campaign:

  1. Click here to identify who your elected officials are by inserting your address. Click on the name of your State Representative and State Senator to obtain their address and fax number
  2. Write, fax, or email a letter to your State Representative and State Senator. You may cut and paste the letter below.  Make sure you customize the letter with your information.
  3. About a week after you send your letter, call both your State Representative and State Senator and ask them to send a letter to Governor Pat Quinn or HFS Director Julie Hamos in support of preserving the MFTD Waiver. Have them send you a copy.

Sample Letter

Dear [Insert Legislator Name Here],

We are writing to ask for your assistance to help fix the Medically Fragile, Technology Dependent (MFTD) Waiver.  The MFTD Waiver is a money saving program funded with federal matching dollars that allows children who use medical technologies like ventilators to live at home instead of in more expensive hospitals. As you may know, the federal Centers for Medicare and Medicaid Services (CMS) requested the state seek a 90-day extension of the current program to allow the state the opportunity to fix this program. Changes made by the SMART Act and additional modifications proposed unilaterally by the Department of Healthcare and Family Services (HFS) have proven problematic and incompatible with federal laws. 

[Insert one or two sentences about your personal story here.]

At a recent Stakeholder meeting, Director Julie Hamos urged us to contact legislators. She told us that she tried to convince the legislature that these changes were misguided (video), but she was unsuccessful. Families and advocates, however, believe that legislators were misled by HFS to think that changes to this program would result in savings to the Medicaid program. HFS told legislators that the suggested changes would save $15 million, but on July 11, 2012, Director Hamos conceded that the $15 million figure was inaccurate (video). 

The changes to this program will without a doubt result in the forced institutionalization of many children throughout Illinois. The monthly cost of institutional care for this population is $55,000 while the cost of home care averages $15,000 per month.  Each child who is eliminated from the program and is forced into an institution will cost the state nearly $40,000 extra per month or $480,000 extra per year.  If only 23 children are institutionalized, the supposed $15 million in savings is eliminated entirely.

We also want to make sure you understand that these changes will result in millions of lost federal matching dollars.  First, the SMART Act imposes copayments on nursing care, and for each dollar charged in copayments, the state loses one dollar in federal matching funds. Secondly, the Governor's Rebalancing Initiative to move people from institutional care to home care is now disqualified from an enhanced federal match through the Balancing Incentives Program. Placing an income cap on the MFTD waiver reduces eligibility for home and community based services, thereby disqualifying Illinois from this program. Millions of dollars will be left on the table and directed to other states as a result of this action.

Representatives from HFS testified that the cuts in the SMART Act would only affect "wealthy" people who can easily afford to care for their children. What they failed to tell legislators is that the annual $188,200 average cost per child is not covered by private insurance, and families earning as little as $95,000 will no longer be eligible for the program. It is mathematically absurd to expect a family to pay more than twice their income to keep their child at home.  These families will be forced to institutionalize their children, quit their jobs, get divorced, or give up custody of their children, and all of these options will end up costing the state more money.

The mathematics notwithstanding, there is a more important issue here.  HFS is going beyond the mandate of the SMART Act and making further changes that will gut this program, forcing institutionalization of children of all income levels at a higher cost to the state. They are trying to eliminate the provision of Hospital level of care from the program through administrative action, which could either make 99% of children ineligible, or at minimum reduce their nursing care by about 50%.

We ask that you join a growing group of legislators who have publicly committed to saving the MFTD Waiver.  We kindly request that you write a letter to Director Julie Hamos at HFS or Governor Pat Quinn expressing your support for this program.

We ask that you commit to the following:

  1. Scheduling and attending an open hearing during the fall legislative session, which will include families and advocates, so that legislators may obtain complete and accurate information about this program
  2. Fixing the SMART Act to prevent unintended consequences to the MFTD Waiver
  3. Using your constitutional powers of oversight to ensure that HFS does not exceed the mandate of the SMART Act by making irresponsible changes to program, such as changing the level of care, which will lead to higher costs to the state

We appreciate your support on this issue.  Please feel free to contact us for more information.


[Insert your name, phone number, address, and email here]