MFTD Waiver Families

Support for families of children in the Medically Fragile, Technology Dependent Waiver

Blog posts : "General"

Update on Reimbursement Cuts

We have begun multiple campaigns against reimbursement cuts, including calls/emails to the governor and legislators, and joining with other groups to form coalitions. See more on the Advocacy Page.

Today the three providers of DME ventilator and other respiratory services to MFTD kids are releasing…

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Open Letter to Governor Rauner on Reimbursement Cuts

Dear Governor Rauner:

When you stated that your budget “provides care for our most vulnerable,” we would like to believe you were thinking of the children in the Medically Fragile, Technology Dependent Waiver, a Medicaid waiver that provides home nursing care to children with ventilators, tracheo…

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Reimbursement Cuts

As of May 1, 2015, there will be a 16.75% reimbursement cut for private duty nursing, along with most other services, in Illinois. These devastating cuts have the potential to lead to severe medical consequences and forced hospitalization of our kids. 

We are just beginning a fight against these…

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Chicago Tribune Article on NPCS Case

See this Chicago Tribune article on the NPCS case. (Requires free registration.)

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Restraining Order Granted to Prevent Home Nursing Cuts

Good news!

In our previous post, we described the lawsuit that has been filed for children who receive home nursing through Medicaid's NPCS program. Illinois had attempted to eliminate or reduce the hours of virtually all children in this program.

Today, the judge for the lawsuit approved a te…

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Lawsuit filed over nursing hour cuts in the NPCS program


The Legal Team of Robert H. Farley, Jr., Michelle N. Schneiderheinze, Mary Denise Cahill and Alysha Briggs-Miller, have filed a Federal Class Action Lawsuit against the State of Illinois as a result of its failure to provide medically necessary in-home skilled nursing services to ch…

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Updates: More on Nursing Care Cuts, Website, New Budgets

Update #1:

We have determined that 68 children have had nursing cut through the NPCS program in the past six months. We expect this number to grow. The ever-dedicated attorney Bob Farley is taking a look at options regarding potential litigation. If you have had your nursing hours cut, please con…

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NPCS Families Losing Nursing

We have been informed that almost all children receiving home nursing through the NPCS program who have been evaluated by the outside agency (Kepro) have had their home nursing hours eliminated. The vast majority of these children receive financially-based Medicaid and are children with medical need…

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January Calendars

We are continuing to track hours actually received during January.  Here are January calendars for anyone who needs one.

January calendar for families who receive hours

January calendar for families who receive budgets


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Hours Tracking

During December and January, MFTD families will be tracking the actual number of nursing hours they are receiving.  Please use the following calendars to assist you in tracking your hours for the month of December.

Instructions for Calendars

Calendar for Families who Receive HOURS

Calendar for F…

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A Note About Managed Care

Many families may have received notices about children in Illinois being required to join managed care this fall. All children in the MFTD Waiver are exempt from managed care. You do not need to sign up for a plan. If you accidentally signed up for one, call your DSCC case manager to resolve the si…

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Father sues Blue Cross for denying nursing care

Another critically important lawsuit from lawyer Bob Farley.  If insurance companies would provide home nursing care, many children in the MFTD Waiver would not need to rely on Medicaid for nursing care.  The state could save millions annually if insurance companies provided home nursing care.  Plea…

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Ronald McDonald House Valentine's Day Party

On Valentine's Day, members of MFTD Waiver Families threw an amazing party at Ronald McDonald House for families staying there. In addition to serving dinner, volunteers decorated the dining room with mood lighting, fresh flowers, and lanterns, and gave adults and children Valentine's Day gift bag…

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New MFTD Waiver Approved

February, 2014

We are thrilled to announce that a new MFTD Waiver was approved by the Centers for Medicare and Medicaid Services (CMS)! 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 c…

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