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MFTD Waiver Families

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

Transition for Young Adults

The state has requested a change to the waiver that would allow young adults already in the waiver to remain in the waiver through adulthood. In other words, the waiver is available to all ages as long as a child enters the waiver before age 21. If this change is approved, which we expect it will be, no transition will be needed.

Currently, once a young adult turns 21, he or she is no longer eligible for the MFTD Waiver. Young adults who have been part of the MFTD Waiver are entitled to receive the same level of services after their 21st birthdays under a settlement, Hampe v. Hamos. For more information on the settlement, see the Hampe v. Hamos page from the Department of Healthcare and Family Services.

If a young adult has already reached age 21 and has never been in the MFTD Waiver, he/she unfortunately is not eligible for the level of care under this settlement.

Transition Process

Transition begins at about age 18. Families typically work with their care coordinators to determine how the young adult's needs may best be met after leaving the MFTD Waiver. Young adults may transition to adult programs, typically the Persons with Disabilities Waiver (operated by Division of Rehabilitation Services [DRS or DORS] and part of the Home Services Program) or the Adults with Developmental Disabilities Waiver. Under the Hampe settlement, adults may also remain with UIC Specialized Care for Children to continue receiving services in the model of the MFTD Waiver.

Prior to age 18, parents should also seek guardianship of their adult children, if necessary, in order to assist them through the transition process. See this document on guardianship for more assistance.

Hampe Settlement Process

Young adults who have aged out of the MFTD Waiver (or will soon) are covered by the Hampe Settlement Decree, which mandates a specific procedure for obtaining the same level of services. This process has just begun, but at this time this is our best understanding.

Step 1: Young adults will be evaluated by an outside vendor to determine what their needs are. These evaluations were initially performed by eQHealth Solutions but will likely be provided by KePro in the future.  We believe they are administering the MNNS to determine a young adult's need.

Step 2: Young adults and/or their guardians must choose to either remain under the auspices of UIC Specialized Care for Children, or move to one of the pre-existing adult programs (Physical Disabilities Waiver or Developmental Disabilities Waiver). If a young adult selects one of the adult programs, he/she is bound by the rules of that program. Because only limited hours of home nursing care are available through adult programs, this may lead to a dramatic reduction in private duty nursing care. We suggest remaining with UIC Specialized Care for Children and not transitioning to an adult program. We have been informed that many families are being encouraged to switch to adult programs with a promise that they will receive more hours of service. These hours, however, are NOT hours provided by a nurse, but hours provided by an unskilled personal attendant.