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With Katie Beckett Barely Put to Rest, Some State Legislators Try to Bury the “Katie Beckett Waiver” in Illinois

Family Voices Indiana shares this press release from National Family Voices. It is important for us to share our voice in support of families in Illinois, and to ensure our own  children continue to receive the supports they need here in Indiana in the future:
Springfield, Illinois, May 30  Less than one week after Katie Beckett was buried, the state legislature in Illinois will vote on legislation that could 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 (MFTW – sometimes called the MFTD), 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 MFTW program.

Katie Beckett passed away on May 18 at the age of 34, and was buried in Cedar Rapids, Iowa on May 26. (To read about Katie Beckett’s life as an active advocate for children with special health care needs visit .)

Senators in Illinois have recently passed a budget that funds state institutions instead of redirecting those resources to serve more people with disabilities by implementing home care in their communities. The House vote is pending this week. Local advocates for Children with Special Health Care Needs (CSHCN) are hoping the House will embrace the Governor’s Rebalancing Initiative which supports Respite Grants and the MFTW allowing CSHCN to receive Medicaid compensation for at-home care. The Arc of Illinois notes:
“For every one child in an ICU, five children can be funded to thrive in their homes. Home care
with the MFTW waiver is one-third the cost of hospitalization or institionalization, and the average enrollment
period 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 MFTW program.”

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 MFTW 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.”

The local Illinois group, “Save the MFTD Waiver,” has 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.”

For more information please contact: Melanie Rubin, Director of Communications,
National Family Voices

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