[Congressional Record Volume 168, Number 84 (Tuesday, May 17, 2022)]
[Senate]
[Pages S2539-S2540]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                            MORNING BUSINESS

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                 REMEMBERING JULIANNE ``JULIE'' BECKETT

  Mr. GRASSLEY. Madam President, I want to honor the life and legacy of 
Julianne ``Julie'' Beckett of Cedar Rapids, IA. Julie was a mother and 
passionate advocate for children and youth with special healthcare 
needs and disabilities. I got to know Julie very well over the years as 
the result of her daughter, Katie Beckett, and Julie's passionate 
advocacy on Federal policy work such as Katie Beckett waivers, Family 
Opportunity Act, Money Follows-the-Person, Family-to-Family Health 
Information Centers, Advancing Care for Exceptional Kids Act, 
Accelerating Access to Kids Care Act, and more.
  Julie's daughter, 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 and her respiratory system, and 
she was attached to a ventilator. She would be almost 2 years old 
before she could breathe on her own. 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 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. He worked to convince the Reagan administration that the 
system should be changed to allow States to provide Medicaid to 
children receiving care in their homes. Ultimately, President Ronald 
Reagan took up Katie's cause, intervening so that Katie could receive 
treatment at home and still be covered under Medicaid.
  In the 1980s, Julie and Katie were able to help change national 
policy that became known as ``Katie Beckett waivers'' and, to date, 
more than a half million disabled children have been able to receive 
care in their homes with their families rather than being forced into 
hospitals and institutions. Katie passed away on May 18, 2012. Since 
then, Julie continued her advocacy.
  Sadly, last Friday, May 13, 2022, Julie passed away. As the result of 
Julie's advocacy, children like Katie are able to live a healthy, 
happy, and independent life. Our Nation has lost a passionate advocate 
for children and youth with special healthcare needs and disabilities. 
For more than 40 years, Julie advocated and organized the voices of 
families of children and youth with special healthcare needs and 
disabilities. Julie cofounded Family Voices, a national family-led 
organization of families and friends of children and youth with special 
healthcare needs and disabilities. Julie was instrumental in passing 
the Family Opportunity Act, which established Family-to-Family Health 
Information Centers and created options for families with children and 
youth with special healthcare needs and disabilities to buy into 
Medicaid while continuing to work, among other important provisions. 
Julie also worked at Child Health Specialty Clinics in Iowa for 30 
years and served as a consultant with the American Academy of 
Pediatrics. In 2021, she was honored with the Family Voices Legacy 
Award in recognition of her outstanding lifetime contributions to 
healthcare policy and services that have improved the lives of children 
with special healthcare needs and disabilities and their families. 
Julie positively impacted the lives of children and youth with special 
healthcare needs and disabilities and their families.
  While Julie would often say she was ``Katie Beckett's mom,'' we also 
knew her as a passionate advocate and servant leader. Julie's lifelong 
pursuit to improve the lives of children and youth with special 
healthcare needs and disabilities made an impact for the better for her 
community, State, and Nation. Godspeed, my friend.

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