Maintain children’s health care waivers

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 also saved health care costs; in fact, Katie alone saved the federal portion of Medicaid $360,000 each year for the first 10 years of her life.

Unfortunately, right now the word 'waiver” does not necessarily mean good news for those with special needs. A proposal in the Congressional health care legislation gives states the option to apply for waivers that harm people who suffer from complex health conditions.

Specifically, the bill that passed the House of Representatives and now is in the Senate includes proposals to block grant or cap Medicaid funding, which gives states an option to be exempt from covering the Early, Periodic Screening, Diagnosis and Treatment program within their Medicaid plans. EPSDT came about 50 years ago because half the young men drafted into Vietnam failed to pass the health exam required to serve. The federal government responded by requiring Medicaid to cover EPSDT, which includes an array of screenings for children so health problems and developmental delays can be diagnosed and treated early, or averted altogether. Early intervention saves money and heartache. Timely discovery of a condition allows a child to begin treatment quickly.

Without EPSDT's child-focused, pediatrician-recommended benefits, Medicaid coverage could fall short of meeting the health care needs of millions of children, particularly those with special health care needs.

The findings are part of an analysis by the Georgetown Center for Children and Families. It concluded, not surprisingly, that there are risks when politicians instead of pediatricians determine children's health care.

Four in every five low-income children and nearly half of newborns, children under the age of 6, and children with special health care needs rely on Medicaid, the report shows. These children have higher health care costs that their families could not afford if Medicaid did not include EPSDT.

So many of these children don't have a voice, so I'll use mine to speak for them.

We cannot anticipate the things that happen to us, which is why it is so important to preserve the Medicaid program - it needs to continue to be there when people need it the most.

All people who have health coverage from the traditional Medicaid program as well as those who access it through waivers will be hurt by the proposed changes.

I urge our elected officials to help protect my daughter's legacy by promoting policies that protect children with complex health care needs by preserving Medicaid.

' Julie Beckett convinced U.S. Rep. Tom Tauke, a Dubuque Republican, to sponsor the 'Katie Beckett Waiver” legislation. It was signed into law about 30 years ago by President Ronald Reagan, and guarantees in-home and community health care are a part of Medicaid.