Great victory for families. From today’s Chicago Tribune.I meet with Senate President Cullerton and Ligas Court Monitor today.


Families of medically fragile kids drop suit
State now working to preserve home care paid for by Medicaid
By Julie Deardorff Tribune reporter

   Attorneys representing the families of some of Illinois’ most critically ill children on Tuesday voluntarily withdrew a class-action lawsuit, citing progress in the state’s effort to restore funding for home care.

   The lawsuit had accused the Illinois Department of Healthcare and Family Services of trying to implement changes that would force children whose lives depend on medical technology out of their homes and into institutional care.

   But recent legislation and other changes proposed by the state show there is no need to proceed with the case, said plaintiffs’ attorney Robert Farley, adding that he could reinstate the suit if necessary.

   More than 1,000 medically fragile, technology-dependent children in Illinois currently receive in-home skilled nursing services paid for by Medicaid. About half are in a waiver program for families whose income exceeds Medicaid’s usual eligibility requirements or who do not qualify for other reasons.

   Last year, as a cost-cutting measure, state officials proposed several major changes to the program, including an income cap that would have restricted eligibility to families earning 500 percent of the federal poverty line.

   State officials said only 5 percent of families would be affected by the new income requirements. But parents argued that the income cap was arbitrary and would bankrupt middle-class families who could have to pay 200 percent or more of their annual income to keep their children home. As a result, more children would be shunted into hospitals or nursing homes, which comes at a higher price to taxpayers, the parents said.

   In July, Gov. Pat Quinn signed legislation that eliminated the controversial income cap on the waiver program. The state had also proposed reducing the number of paid nursing hours by up to 50 percent. But Farley said Illinois is now moving to maintain the previous level of care.

   The families, he said, are getting what they hoped for: “Keeping intact an excellent program that had served thousands of medically fragile children for so many years.”

   Still, some parents remain frustrated that the state has not involved parents in plans and proposals for how the waiver program may change after a series of federally approved 90-day extensions expires Jan. 25.

   “All we did in the classic government way was kick the can down the road again,” said Chicago’s Michael Goldberg, whose 2-year-old son, Quincy, was born prematurely at 24 weeks with chronic lung disease and has spent most of his life on a ventilator. Three weeks ago, Quincy had reconstruction surgery and is now able to breathe through his nose and mouth.

   “The state is unorganized, uninformed and everything they have done has been reactionary, as opposed to having real plans in place,” Goldberg said.

   State health officials are pleased the that lawsuit was dismissed and are working to implement a modified program to meet the needs of both the families and the state, said a spokesman for the Healthcare and Family Services Department.

   Officials are trying to get the necessary approvals from the federal government “so the program can continue to provide important care for those it was designed to serve,” the statement said. 

   Twitter @JulieDeardorff


   Quincy Goldberg, then 16 months old, works with a physical therapist last year at his home in Chicago.

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)