Waiver Extended 90 Days
The waiver has been extended an additional 90 days, until January 25, 2014, meaning in-home nursing care will continue for children until January 25.
After the legislature eliminated the income cap on the MFTD waiver and the state committed to providing "hospital level of care" services, attorneys for our families withdrew the MFTD Waiver lawsuit. See this article in the Chicago Tribune for more information. While resolving these issues is a huge win for our families, we still do not have a permanent solution in place.
Future of Waiver Uncertain
We have also been informed that the state has submitted a new modified waiver to the federal government, and plans to submit a state plan amendment next month defining eligibility for the program. In theory, this represents a permanent solution. However, the state has refused to share either document or the content of either document with our families. We do not know what the program will look like or how it will change.
In addition, the Office of the Governor recently announced a plan to eliminate the MFTD Waiver--and all waivers in Illinois--replacing them with a comprehensive 1115 demonstration waiver beginning around February 2014. See this information from the Arc and download the powerpoint 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. It is possible that the state could use this program to severely limit both eligibility and services, or impose burdensome cost sharing on families. In addition, because the children in the MFTD Waiver have needs that are very different from the majority of people who would be served by the new program, they may lose access to unique services they require. We will be following the creation of this program very carefully.
About Our Fight
About two years ago, Illinois attempted to eliminate or restructure its program for children who are technology dependent and medically fragile. We have been fighting these changes ever since. 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.
For an excellent summary of the main problems with Illinois' proposal to restructure this program, please read this letter from Equip for Equality, Illinois' Protection and Advocacy Organization. We also have detailed pages on the main issues affecting our children. See the Waiver Issues page or click below to view information on specific topics:
These are the most fragile, most complicated children in Illinois, and many may end up in hospitals--at three times the cost to Medicaid--unless we Save the MFTD Waiver!
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.
LET OUR KIDS LIVE AT HOME!
LET OUR KIDS LIVE AT HOME!