I was honored to meet many families today that support their children at home because of the Medically Fragile Technology Dependent Children’s Waiver here in Illinois.
 This waiver enables about 550 great kids to remain in their home, attend school and participate in life instead of being shut away in nursing homes or hospitals. Their bedrooms along with their toys and books are equipped like hospital rooms because many of the children require 16 hours of nursing care each day. I know that most of these families lead highly structured lives because most of the care falls on their shoulders when nurses do not show up and when no one is there but the family on the night shift. This program is one that our state should be so very proud of and it is about to change dramatically.

Director Hamos of the Illinois Department of Health Care & Families (HFS) met with families for about an hour and a half. The family’s stories were incredible success stories about how this program has impacted their lives but now these families are facing an uncertain future as HFS decreases the level of care for the children, increases co-pays and places financial caps on these services. HFS also wants to transition to non-nursing care that has been prescribed by the children’s primary care physician!

All of these changes because of the cries from legislators for Medicaid reform here in Illinois!

I am not sure that legislators were fully aware of the cuts in nursing services to these children and their families are now being faced with when they voted. I am not sure that legislators and HFS wanted to violate civil rights and the Olmstead decision when they voted. One class action lawsuit has already been filed.

Certainly, fair cost sharing was discussed as part of Medicaid reform and this is worth looking at but this has never been a part of this program. Don’t blame the families for this. Why would the state even throw out one child out of this program in the name of Medicaid reform?

The deadline for this important program is August 30th. That is when this waiver expires. The families were looking for an extension for the waiver but the Director could not commit to that request this morning. The federal government will grant an extension of this waiver but will only do this if they are asked by the state. Director Hamos should and must move quickly on this request.

The clock is ticking and the families deserve at least this.

I think Director Hamos learned a lot about this program and what it means to the children and their families. I hope she continues the dialogue with the families as she did today as they rewrite how this program supports children in their homes instead of institutions.

Medicaid reform was not supposed to kick medically fragile children out of their homes but right now that is the proposal on the table.

Please excuse my lack of photo skills but these kids tell the story better than I can.

Tony Paulauski
Executive Director
The Arc of Illinois
20901 S. LaGrange Rd. Suite 209
Frankfort, IL 60423
815-464-1832 (OFFICE)
815-464-1832 (CELL)