The Arc met with the Governor’s staff and legal advocates in the Capitol to measure efforts to protect this important support for children and families.Below is a press release to be shared with the national media which we helped to produce.


As the World Remembers Katie Beckett, Advocates Fight to Keep the “Katie Beckett” Waiver Intact in Illinois

For Information Contact:Melanie Rubin,,  505-872-4777

Springfield, Illinois, May 31 During the week after Katie Beckett’s Memorial Service, the state legislature in Illinois has sent proposed legislation to Governor Quinn that will gut Illinois’ version of the Medicaid provision known as the “Katie Beckett Waiver.” In Illinois, this is called the Medically Fragile and Technology Dependent Children’s Waiver Program (MFTD waiver), which allows children to receive specialized nursing care at home instead of in an ICU or institution.

In 1981 at the age of three and a half, Katie Beckett made history when President Ronald Reagan allowed Katie to go home from the hospital in Iowa where she had lived since the age of six months on a ventilator. Reagan explained the child was being kept in the hospital because of Medicaid rules which forbade paying for her home care, even though the cost to the government would be one-fifth the hospital charges of $10,000 to $12,000 per month. Reagan’s intervention set a new precedent, and shortly afterwards the government allowed exceptions in other states so that parents like the Becketts, who made too much money to qualify for Medicaid, could receive at-home coverage of extreme medical costs for their children. This provision became known as the “Katie Beckett Waiver.”

During the last three decades, more than half a million children in the United States have received waivers to get their care at home. On average, 500 – 700 children in Illinois per year benefit from the MFTD program.

Katie Beckett passed away May 18 at the age of 34. Her Memorial Service was held May 24 in Cedar Rapids, Iowa.
 (Visit www.familyvoices.orgto read about Katie’s life as an active advocate for children with special health care needs.)

Legislators in Illinois have approved a budget that funds state institutions instead of redirecting those resources to serve more people with disabilities by implementing home care in their communities. With this initiative, families who choose to care for their children at home would be subject to high premiums or co-payments, but more expensive institutional care options would remain free.  An income cap would also be placed on the program, putting families in the exact same situation as the Becketts were back in 1981 when they sought a waiver for Katie.  Middle income families who earn too much to qualify, but not enough to afford home care out of pocket, would be faced with several unfortunate options including institutionalizing their children, relinquishing custody to the state, or quitting their jobs to lessen their income.

Katie Beckett’s mother Julie, a well-known champion for Children with Special Health Care Needs (CSHCN), stated:
“This is very disappointing. After 31 years of proving how important home and community-based services are to our children, it breaks my heart that some legislators and states still do not get it.”
Illinois advocates for CSHCN are calling upon the Governor and Legislative Leaders to eliminate income caps for families of CSHCN and adopt cost-sharing guidelines that allow all children to receive the care they need at home while minimizing costs to the state.  The legislature may take further action on this possibility today.

The Arc of Illinois notes:
“For every one child in an ICU, at least three children can be funded to thrive in their homes and the average enrollment period in the MFTD Waiver program is just 5-years. Illinois is going against the national movement to close state institutions and is the only state to make such drastic cuts to the MFTD Waiver program.”
The local Illinois group, “Save the MFTD Waiver,” www.savemftdwaiver.comhas stated:
“The average cost for hospitalization in a pediatric hospital is $55,000 per month, while the average cost for children on the waiver cared for at home is $15,684 per month… Only 23 children would need to be permanently hospitalized to erase the $15 million Governor Quinn hopes to cut from the program’s budget.”
Family Voices, Inc. is a national non-profit based in New Mexico which provides support to family-to-family organizations in each of the 50 states that assist families of CSHCN. Executive Director, Dr. Sophie Arao-Nguyen said:
“National Family Voices supports efforts by The Arc of Illinois, Family Voices of Illinois, and other local groups to maintain the MFTD waiver in full force to best serve CSHCN in Illinois within their homes and communities, as well as to save money for the state. These waivers have been proven to work all over the country. We don’t want to see a precedent set in Illinois for gutting the waiver.” 

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)