While we continue to review the proposed state budget we have concerns about cuts to grants for respite care, dental clinics, family clinics and more. Another area of concerns is the projected $2.7 billion in Medicaid cuts in the Dept. of Health Care and Family Services! Within HFS, is the Katie Beckett Waiver supporting children who are medically fragile and technology dependent. The Arc is very concerned that that waiver will not be renewed and those children and their families will be without support.Here is The Arc’s Fact Sheet on Saving The Medically Fragile Technology Dependent Children Waiver.

Advocates have also developed a great website and please add your name to the petition to save the Children’s Waiver: http://www.change.org/petitions/director-of-the-il-dept-of-healthcare-and-family-services-not-cut-the-medicaid-waiver-for-medically-fragile-tech-dependent-children 

The following letter has been sent to Governor Quinn, the Senate and House Appropriation Chairpersons.


Governor Quinn
The Arc of Illinois supports the renewal of the Illinois’ Medicaid Waiver for Medically Fragile/Technology Dependent Children.
Since 1985, Illinois has had a Medicaid Home and Community Based Waiver specifically for children under age 21 who are medically fragile and technology dependent.  Also known as the Katie Beckett Waiver, or the DSCC Home Care Waiver, this waiver enables many of our state’s most medically needy children to live with their families and receive nursing care both at home and in school.
This waiver currently has the capacity to serve up to 700 children per year and currently has 498 children enrolled. Like other Illinois Medicaid waivers for children, this waiver enables eligible children to qualify for Medicaid by “waiving” (not counting) their family’s income.
The current waiver for medically fragile/technology dependent children is due to expire in August, 2012. As part of the Department of Healthcare and Family Service’s proposal to implement budget cuts, elimination of this waiver is now being considered. If this waiver is eliminated, only children whose families are income-eligible for Medicaid will be able to receive 1:1 nursing care at home and in school.
Families whose children are medically fragile/technology dependent could be forced to go back to the “options” that were available prior to 1985:

  1. Children could be forced to live in hospitals and nursing homes.
  2. Families may be compelled to stop working in order to qualify for Medicaid.
  3. Families might have to relinquish custody of their children in order to obtain services.
  4. School districts will have to pay themselves for nursing care for these students.

 All of these “options” are not acceptable.
We respectfully request that your administration renew the Illinois’ Medicaid Waiver for Medically Fragile/Technology Dependent Children.
Tony Paulauski
Executive Director 

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)