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MFTD Waiver Families

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

Appeals Overview

Many waiver families have had to appeal because Illinois Department of Healthcare and Family Services routinely cuts hours or does not grant the number of medically necessary hours a child's doctor recommends. While appealing may seem a tedious process, many families have successfully won their appeals. You may appeal your child's number of approved hours and your child's number of approved respite hours. Your nursing agency may also appeal your child's reimbursement rate.

To appeal, submit a letter of intent to appeal, including your child's name, Medicaid case number and ID number, program, and what your appealing. Also request a copy of all relevant documents used to determine your child's needs. In order to maintain your current hours, this letter must be submitted within 10 days. Send this letter by certified mail or another service that will prove when it was sent and that it was received. A sample letter is available on the Appeals Toolkit page. The address is:

Illinois Department of Human Services
Fair Hearings Section
401 S. Clinton
6th Floor
Chicago, Illinois 60607
Phone: (855) 418-4421
Fax: (312) 793-2005
HFS.FairHearings@Illinois.gov

Shortly thereafter, you should receive a confirmation letter followed by a date for your hearing a few weeks/months after that. You may request an expedited hearing or phone hearing if you think one is necessary.

Families who have been through an appeal will be more than willing to help you. Please contact us at mftdwaiver@gmail.com for more information and access to other families who have navigated through this process. 

We have several additional pages on appeals.  Most require a password for access. Please contact us in order to obtain the password. The Appeals Steps page gives a general overview of the steps required in an appeal. For more information on creating the contents of your appeal argument, including issues with the point scales, level of care tools, or the KePro evaluation, see the Appeals Toolkit. Legal citations and links relating to appeals can be found on the Appeals Legal Information page.

Reasons to Appeal

The following are the most common reasons for an appeal, and when the appeal should be made.

  1. Your child's hours award or budget has been reduced or eliminated even though there was no change in medical status. You should appeal within 10 days of receipt of your award letter. If you appeal within the 10-day window, your child will be allowed to keep his/her current number of hours or budget during the waiting period before the appeal is heard. You may also appeal after the 10-day window, but your child's hours/budget may be reduced while you wait for the appeal. Note that due to a pending lawsuit, HFS is currently not permitted to reduce hours/budgets for any child receiving private duty nursing at this time. 
  2. Your child did not receive the number of hours (or equivalent budget) that his/her physician requested. You should appeal within 60 days of receiving your award letter. If your child's medical needs would be impacted by not having enough hours during the waiting period, you may request an expedited hearing.
  3. Your child has had a change in medical status requiring more hours. You may apply for a temporary or permanent increase in hours due to a medical status change at any time. First contact your DSCC coordinator, as many of these appeals can be done informally and quickly without an appeal hearing. You will need a physician's letter explaining the need for an increase in hours. 
  4. Your child required more hours due to a change in the family situation. You may apply for a temporary or permanent increase in hours due to a family situation change at any time. Changes in the family situation include a change in school attendance, a caregiver working more hours, a caregiver unable to provide some/all care, or changes due to a death in the family or divorce. First contact your DSCC coordinator, as many of these appeals can be done informally and quickly without an appeal hearing. Note that under EPSDT, hours awards are based on medical necessity and not caregiver availability, and most children in this program require 24/7 nursing care. Caregivers cannot be forced to provide more hours of care than they are capable of providing.