Recent News:

Please visit our NEW MFTD Waiver Families website if your child is in or needs the MFTD Waiver.

New MFTD Waiver Approved!

We are thrilled to announce that a new MFTD Waiver was approved by the Centers for Medicare and Medicaid Services (CMS) this week!  The new program is nearly identical to the previous program.  All of the troubling issues, such as income caps, cost sharing, personal attendant use, and level of care reductions, have been resolved.  We are very appreciative to both CMS and Illinois' Department of Healthcare and Family Services (HFS) for creating a safe and fair program that allows our children to remain at home!

1115 Demonstration Program

The Office of the Governor still plans on seeking approval for a program eliminating all waivers and replacing them with a comprehensive 1115 demonstration waiver. See the state's 1115 page to get more information about this new program. While we try to remain optimistic, this type of waiver allows the state to create a completely nonstandard program, which can waive Medicaid standards and laws. We submitted public comments on the 1115 waiver concept paper, which you can read here.

About Our Fight

About two years ago, Illinois attempted to eliminate or restructure its program for children who are technology dependent and medically fragile.  It took two years, but we finally were able to get all issues resolved and a new waiver in place in January 2014.  

For information on the Medically Fragile Technology Dependent (MFTD) Waiver, a money saving program that keeps kids at home instead of in hospitals, please visit the About page or read the MFTD Waiver Facts.

See the Waiver Issues page or click below to view information on specific topics:

How to Truly Save Money in the MFTD Waiver

We understand and appreciate that Illinois is facing a fiscal crisis and needs to save money.  As families who participate in this program, we know where the inefficiencies are and how to save money in this program without affecting eligibility or services.  We have also developed creative strategies to minimize costs to the state based on novel programs in other states.  We believe we could save as much as $41,135,112 a year through a few simple strategies.  Read our revised Cost Savings document for more information.

  • Maximizing Third Party Liability Potential Savings:  $7,870,468 per year 
  • Adding Private Duty Nursing as an Essential Health Benefit Potential Savings:  $4,082,480 per year 
  • Other Potential Savings:  $29,182,164

Please watch the video below to see all the precious moments the MFTD Waiver has made possible.