MFTD Waiver Families

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

Blog posts

Testimony to House Committee on Medicaid Managed Care

December 7, 2017

One of our members spoke today to the House Appropriations-Human Services Committee on the potential effect of Medicaid managed care on children in the MFTD Waiver. You can read the testimony below or download it here.

Read more

ICAAP Issues "Concerns" over Managed Care for MFTD Children

May 20, 2017

We greatly appreciate the following letter, written by Illinois' branch of the American Academy of Pediatrics (AAP), that lists out a variety of concerns regarding placing children in the MFTD Waiver into Managed Care. You can read the letter here.

Read more

MFTD Waiver Families Oppose Managed Care

May 15, 2017

We have been informed that children in the MFTD Waiver are to be moved to managed care as of January 2018. We strongly oppose this move. Read our open letter to Governor Rauner:


May 15, 2017

Governor Bruce Rauner
Office of the Governor
207 State House
Springfield, IL…

Read more

Federal Judge Orders State of Illinois to Provide Community-based Nursing Care to Children with Severe Disabilities and Medical Conditions

April 7, 2016

Federal Judge Orders State of Illinois to Provide Community-based Nursing Care to Children with Severe Disabilities and Medical Conditions

For Immediate Release:
April 6, 2016

Jill Wohl
Jane Perkins
Robert H…

Read more

Big Win in OB vs. Norwood

March 21, 2016

A huge WIN today in one of our pending lawsuits, OB vs. Norwood. It applies to ALL children receiving nursing through Medicaid, and requires the state to immediately make sure all children are receiving the nursing care hours they have been allotted. It does not specify how the state must meet the r…

Read more

New Lawsuit Filed

November 30, 2015

The Legal Team of  Robert H. Farley, Jr., the Legal Council for Health Justice through Attorneys Thomas D. Yates and Shannon M. Ackenhausen and the National Health Law Program through Attorneys Jane Perkins and Sarah Somers, have filed a Federal Class Action Lawsuit against the State of Illinois on …

Read more

Cuts to Hours/Budgets in the MFTD Waiver

October 16, 2015

Many MFTD Waiver children have been reviewed in the past two months by KePro, the independent entity that evaluates medical need for nursing care. The handful of families who have received their award letters have all received reductions in their budgets or hours. In addition, children who were in t…

Read more

The Battle Continues...

September 25, 2015

Today one of our families was featured in a great article in the Pantagraph. Thank you to the Pantagraph for continuing to help us fight to allow our children to live at home! Click here to read the entire article.


Read more

New Pages for Reimbursement Cuts and NPCS Case Advocacy

May 26, 2015

We've had so much Advocacy going around lately that we have added several new pages devoted to specific current issues. These include the following:

Read more

News Story on Reimbursement Cuts

May 15, 2015

Update on Reimbursement Cuts

May 14, 2015

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…

Read more

Open Letter to Governor Rauner on Reimbursement Cuts

May 8, 2015

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…

Read more

Reimbursement Cuts

May 5, 2015

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…

Read more

Chicago Tribune Article on NPCS Case

April 23, 2015

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

Read more

Restraining Order Granted to Prevent Home Nursing Cuts

April 22, 2015

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…

Read more

Lawsuit filed over nursing hour cuts in the NPCS program

April 9, 2015


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…

Read more

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

February 18, 2015

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…

Read more

NPCS Families Losing Nursing

January 24, 2015

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…

Read more

January Calendars

January 5, 2015

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


Read more

Hours Tracking

December 3, 2014

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…

Read more

20 Blog Posts