I fought for my daughter as a “waiver mom.” Now I am fighting for the millions more children like her who could lose everything.
Being a mother is one of the most gratifying roles of my life. As many parents will attest, there sometimes comes a moment in parenting when a certain strength you didn’t know you had emerges because your child needs you. It’s the kind of superhuman parenting power that causes a mother to find herself able to lift a car up off her trapped toddler or, in my case, engage in the fight of my life for my daughter, from Cedar Rapids all the way to Washington, D.C.
Though my daughter Katie no longer is with us, I’m channeling my parenting superpower once again to fight for others who could stand to lose everything as Congress debates health care policy.
My fight began when my daughter contracted viral encephalitis at just 4 months old, which compromised her immune system and did irreversible damage, requiring her to use a ventilator to breathe and leaving her partially paralyzed. Because of regulations at the time, we could not take Katie home to manage her care, but instead were forced to keep her hospitalized for three years.
Ultimately, the Katie Beckett Waiver took effect and Katie came home.
Under the waiver, Katie and children like her could qualify for federal support to get the care they need to thrive at home, which Katie did for 34 years — more than three times the age doctors said she would reach.
She received home health care that allowed her to attend college, land employment, help advocate for others with special needs and, most of all, live a healthy, happy, independent life.
The Katie Beckett Waiver…