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Save the MFTD Waiver!

The 2012 battle to preserve Illinois' Medically Fragile, Technology Dependent Waiver

Katie Beckett: We're Fighting the Battle in Your Honor

May 21, 2012
As members of our group called, emailed, and faxed the Illinois legislature to save the MFTD Waiver, we received some sad news. Katie Beckett passed away at the age of 34.
 
Katie is the reason that we have the MFTD Waiver in the first place. Katie and her family were instrumental in getting kids out of hospitals and institutions, and helped change Medicaid law to allow children and adults with disabilities to live in the community.
 
In 1981, Katie was living in a hospital.  She has been there for three years and was fundamentally stable, apart from the tracheostomy that helped her breathe, and the ventilator she needed at night.  Her doctors felt she could go home with appropriate nursing care and estimated that the cost of caring for her at home was much less than it was in the hospital.
 
But there was a problem:  her private insurance had run out, and Medicaid would only pay for her expenses if she remained in the hospital, because her family income was too high to qualify for Medicaid at home.  Institutional care, including hospital care, is guaranteed by federal SSA law, but there was no requirement in 1981--and still isn't today--that guaranteed Medicaid eligibility once you left a hospital or institution.  
 
Katie's family petitioned their local legislators, and eventually President Reagan took on her cause.  A month after he discussed her case publicly, Medicaid law was changed and Katie went home.
 
Katie went on to live a rather average, typical life.  She went to school and graduated. She lived on her own in an apartment and went to college.  She and her mother remained fervent advocates for children with disabilities.
 
It's hard to imagine what Katie's life would have been like had she remained in the hospital.  She probably would not have lived 34 years.  She definitely would not have gone to high school or college or lived independently.  Most likely she probably would have died within years, and we never would have had the honor of knowing the adult Katie--the writer, speaker, and advocate for people with disabilities.
 
If you've read any of the Save the MFTD Waiver website, Katie's story may sound eerily familiar. That's because we are fighting the EXACT SAME battle again here in Illinois, 30 years after Katie's family fought it. The changes in Medicaid law and programs that allow home and community based services are STILL optional, meaning Illinois technically doesn't have to offer programs like the MFTD Waiver. That means that Illinois can cut the MFTD Waiver entirely, change the eligibility criteria, or charge exorbitant premiums-even if the result is sending hundreds of kids back into hospitals and institutions at 3 times the cost. Our only recourse is to sue the state under the Americans with Disabilities Act as interpreted through the Olmstead Supreme Court decision.
 
As legislators are making their final decisions about the MFTD Waiver, it is critical that they remember Katie Beckett's story. If Katie were a child living in Illinois and the state cut the MFTD Waiver, Katie would have gone back to the hospital, and she never would have become the amazing woman and advocate she was until her death.  
 
There are about 500 children in the MFTD Waiver currently. Many of them may go on to be independent citizens who change this world like Katie did. Give them the chance by allowing them to continue living at home. Don't make them fight Katie's battle again, 30 years later. 

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