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Food and Drug Administration Safety and Innovation Act--Motion to Proceed--Continued

Floor Speech

By:
Date:
Location: Washington, DC

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Mr. GRASSLEY. Mr. President, I thank my colleague from Iowa for his very nice remarks about Katie Beckett. I come to the floor for the same reason--to celebrate the life of Katie Beckett.

Never has the word ``inspiration'' been used more appropriately in describing somebody, and today I am grateful to be able to recognize the inspirational life of Katie Beckett.

Mary Katherine Beckett--nicknamed ``Katie''--was born in Cedar Rapids, IA, on March 9, 1978. Five months after she was born, Katie contracted viral encephalitis, followed by grand mal seizures. The encephalitis caused damage to her central nervous system, her respiratory system, and she was attached to a ventilator. She would be almost 2 years old before she could breathe on her own.

As Senator Harkin said, under Medicaid law at the time, Katie could only receive care through Medicaid if she remained in the hospital even though she was able to receive the care at home.

Iowa Congressman Tom Tauke heard of Katie's situation and realized that it made no sense to keep a child in the hospital who could be at home with her family living a better quality of life as well as saving the taxpayers money. Congressman Tauke worked to convince the administration that the system should be changed to allow States to provide Medicaid to children receiving care in their homes.

Ultimately, President Reagan took up Katie's cause, intervening so that Katie could receive treatment at home and still be covered under Medicaid. This change in policy became known as the Katie Beckett Waiver, and to date more than half a million disabled children have been able to receive care in their homes with their families rather than being forced into hospitals and institutions.

But Katie's story doesn't end there. As Katie grew up, as she battled to establish her own place in society as a young American with disabilities, she realized she had an opportunity to serve others who faced similar challenges.

In her own words--and this is from a piece Katie wrote in the year 2002 entitled: ``Whatever Happened to Katie Beckett?''

I started my advocacy career at age ten. It was not my choice, but rather a path chosen for me. It was not until I was twelve or thirteen that I realized the important work I was able to do because I was who I was and how much this work helped other kids.

Katie graduated with a degree in English from Mount Mercy College in Cedar rapids. She lived in the community. She wanted to be a teacher and write novels for young people. She was fiercely independent, sometimes to the consternation of her mother Julie. She was quick-witted and funny and loved a good cup of coffee.

She lived her life as a tireless advocate for the disabled. She testified before Congress several times and was a contributing voice on numerous groups dedicated to disability policy.

When we took up policy proposals such as the Family Opportunity Act and Money Follows the Person, we wanted Katie's perspective and we depended upon her advocacy in the community to get those laws passed. Katie was the living embodiment of a person with disabilities participating and contributing in society.

On Friday, May 18, Katie went home to be with the Lord. She leaves behind thousands of lives touched by her presence. A light may go out, but a light lives on in those of us fortunate enough to have known Katie Beckett.

We remain inspired to work every day to create opportunities for the disabled to participate and contribute and live the life of service and dedication that Katie did. So, obviously, even though not alive today, Katie will remain that inspiration for many people for a long time to come.

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