State of Illinois asks Feds to delay cutbacks for medically fragle children programs | July 18, 2012

{photo: Myra Young, of Chicago, with her four-year-old daughter Letty, attends a meeting about changes in a program that helps kids with complex medical needs. (Heather Charles, Chicago Tribune / July 11, 2012}

Illinois officials have asked the federal Centers for Medicare and Medicaid Services for a 90-day deadline extension to work out changes to a program that funds in-home nursing care for medically fragile and technology dependent children.

Parents whose children now receive care in their homes under a Medicaid waiver program had asked Julie Hamos, head of the Department of Healthcare and Family Services, last week to seek an extension on the state’s deadline to apply for renewal of the program.

The parents feared that planned changes to the program -- new income restrictions and altered standards of guaranteed care -- will force the children out of their homes. They also complain that many details have not been worked out, including a transition plan for children who no longer would qualify.

The changes were slated to go into effect Sept. 1.

Two groups of fragile Illinois children receive in-home skilled nursing services funded by Medicaid dollars. About 500 are Medicaid recipients and about 550 are eligible under the waiver program.

Most of the children have tracheotomies and rely on ventilators to breathe or need feeding tubes or other medical intervention to survive. Without home- and community-based services, they would require institutional care in a hospital or nursing facility.

Officials from the Centers for Medicare and Medicaid Services on July 11 asked state officials to request a deadline extension to allow federal officials time to review the changes. The state submitted its request for a deadline extension on Monday.

In its letter seeking an extension, state Medicaid Director Theresa Eagleson cited the request by the regional office of the Centers for Medicare and Medicaid Services and "concerns expressed by families over the tight time frame for transition to a restructured program."

A spokeswoman for the CMS said the agency is in receipt of the state's request.
"A decision, regarding the extension, should be issued in the coming weeks," she said in a statement.

A group of parents filed a class action lawsuit July 9 seeking to halt the changes to the program, arguing that the plan violates the Americans with Disabilities Act and other federal laws.

Bob Farley, an attorney for the parents, said he viewed the request for a deadline extension as a good development "because no medically fragile child will have their Medicaid benefits eliminated or reduced during this review process by the federal government."

The program is being restructured to help close the state's budget holes and was part of Medicaid legislation passed by the General Assembly in May and later signed by Gov. Pat Quinn.

Article By Deborah L. Shelton
Chicago Tribune

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