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Readers here may be familiar with important changes to Medicaid law and regulations that resulted from the advocacy efforts of an Iowa family to pioneer what became known as the "Katie Beckett Waivers" in the early 1980's. This initial action set the direction for certain services purchased under Medicaid, otherwise only available in institutional settings, to be obtained at home for children with disabilities. Other related changes would eventually follow, including the Americans with Disabilities Act.

Katie Beckett passed away last week at the same hospital where her journey began, 34 years ago. Among those celebrating Katie's life and her family's advocacy is United States Senator Tom Harkin. What follows is the full text of Senator Harkin's comments, and links to articles at the New York Times and National Public Radio for those who wish to learn more.

Katie's story deserves to be shared and her life celebrated widely, especially in this climate of fiscal uncertainty. Whether you knew her, or not, Katie Beckett touched all our lives.

Statement by Senator Tom Harkin In Tribute of Iowan Katie Beckett

As prepared for delivery - May 22, 2012

WASHINGTON, D.C. – Senator Tom Harkin (D-IA) delivered a speech on the floor of the U.S. Senate today in honor of Katie Beckett.  Below is the text of his remarks, as prepared for delivery.

 “Mr. President, last week, our Nation lost one of its most determined and courageous advocates for the rights of people with disabilities, my friend Katie Beckett.

 “I am proud to say that Katie was a native Iowan.  She was born in March 1978, and five months later contracted viral encephalitis.  She subsequently had a seizure and went into a coma for 10 days. This illness caused nerve damage to her brain, which left her paralyzed and unable to breathe on her own.  Katie received a tracheotomy, was placed on a ventilator, and was fed using a tube.  Initially, after coming out of the coma, she could not move at all.  Slowly, much of the paralysis receded, but she was not able to breathe on her own until she was two years of age.  During that time, she lived in a pediatric intensive care unit.  Her family, naturally, wanted her out of the hospital, and home where they could care, support, and love her.  

 “By her third birthday, Katie’s private insurance had reached its $1 million cap, and she began to receive Medicaid support for her health care.  Doctors eventually determined that she could leave the hospital with proper supports at home. However, Medicaid refused to pay for such care -- even though it would cost one-sixth as much as hospital care.  Under Medicaid rules, she could only receive care in a hospital or nursing home setting.  

 “Katie’s predicament received national attention.  And thanks to the intervention of many people, including then Congressman Tom Tauke, President Reagan and many in Congress, a new home- and community -based waiver was created to allow children in Katie’s situation to receive their care at home rather than in hospitals.  This new program was called the “Katie Beckett Waiver.”  

 “At the time, it was thought the program would benefit only a few hundred children.  However, since 1982, over half a million children have benefitted from the Katie Beckett waiver, including 11,000 in Iowa.  Katie and her family were true pioneers in changing the institutional bias in Medicaid, and permitting children with significant disabilities to receive their supports and services in their own homes -- rather than only in a hospital, nursing home, or other institutional setting.

 “Under the new program, Katie went home, almost three full years after she was admitted.  At that time, she was able to be off her ventilator for six hours a day.

 “What happened to her after her discharge?  Well, she started school.   And while her fellow students considered her different because of her medical condition, she never needed special education services.  At an early age, she became a passionate advocate for home- and community-based care.  While still in middle and high school, she testified before Congress, and met with governors and even the President of the United States.  She served as an intern at Exceptional Parent magazine, living in Boston.  That summer between her junior and senior year of high school, Katie learned to manage her own medical care—directing the nurses who provided her treatments and managed her ventilator.  

 “Katie considered advocacy to be her vocation and chosen path -- in particular, helping to raise the consciousness of other young people about disability issues.  Even though she found this work rewarding, she sometimes felt uncomfortable, in those pre-Americans with Disabilities Act days, to be singled out because of her disability.  All she really wanted was – as she put it -- “to fit in and just be normal.”  

 “Katie’s first job was at a music store at a local mall.  She got the job as any other young person would, by virtue of her knowledge and interest in music. But, as Katie said, “advocacy is in my blood and my soul.”  So she looked for work that would allow her to help other people.  She had been volunteering at the local YWCA, in the secondhand shop that supported the only homeless shelter for women and children in eastern Iowa, and was then hired for the receptionist’s job at the Y.  But the job title ”receptionist” did not begin to describe her true job responsibilities.  Katie was the first responder to sexual assault and domestic violence victims.  She helped with the neutral exchange program, where divorced or separated parents could drop off their children without having to encounter each other.  She learned to quickly assess the needs of others, and to help connect them to appropriate services and supports.   She also helped with the supervised visitation program, and was soon promoted to be the assistant to the supervisor of that program.  

 “Later, Katie worked with her mother, Julie Beckett, to help establish the Kids As Self-Advocates network, a group designed to help children and youth with significant medical needs to speak up for their own care and support.  Working through Family Voices, another organization spearheaded by Julie Beckett, Katie helped to teach hundreds of young people how to advocate for their own health care.  In addition, she served as a Senate appointee on the Ticket to Work and the Work Incentives Advisory Panel, which provided advice to the Social Security Administration , the President and Congress on work incentives, employment and other issues facing people with disabilities.

 “Katie Beckett graduated from Mount Mercy College in Cedar Rapids, Iowa, in 2001.  She later took writing courses at nearby Kirkwood Community College, and was close to completing a novel.  A series of illnesses obliged her to put off returning to college to take the classes necessary to become a teacher.  Katie treasured the freedom to engage in the kinds of activities that so many of us take for granted, including eating at Red Lobster, going to the shopping mall and, recently, moving into her own apartment.

 “Katie will be greatly missed by so many people all across America.    She will be remembered for her determined advocacy, and that of her family, which has changed countless lives for the better.  She inspired a whole generation of young people with disabilities by showing that an ordinary person can accomplish extraordinary things through great spirit and determination and persistence.  

 “Mr. President, Dr. Martin Luther King, Jr., said: “Life’s most urgent and persistent question is:  What are you doing for others?”  During her memorable lifetime, Katie answered that question in powerful ways, as an agent for change and a determined advocate.  Her living legacy is the program that bears her name, the “Katie Beckett Waiver,” which will continue to improve the lives of children and young people with disabilities far into the future.”

Source

Find two beautiful photos of Katie within the New York Times story here:

Katie Beckett, Who Inspired Health Reform, Dies at 34


And from Joseph Shapiro at NPR:

Katie Beckett Leaves Legacy For Kids With Disabilities
Weekend Edition Saturday
May 19, 2012

Katie Beckett died Friday morning in the same hospital where she'd once made history. Beckett was 3 years old when her case changed health care law. She was 34 when she died. NPR's Joseph Shapiro explains why she was important to other children with disabilities.

(snip)

SENATOR TOM HARKIN: And that's really what the Americans with Disabilities Act is about. It's about making sure that we don't separate people out with disabilities, but make them part of the families, making them part of the communities, part of the schools. Just an integral part of society. That's what Katie fought for all of her life.

Find full NPR transcript and/or listen to audio here

For more on the Americans with Disabilities Act:

ADA HOME PAGE

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Comment Preferences

  •  I knew of... (3+ / 0-)
    Recommended by:
    WakeUpNeo, AnnieJo, cosette

    ...the Katie Beckett Waiver, but not the story of the amazing young woman behind it.  Thank you for sharing this.  My condolences to Katie's family and friends.

    •  Thank you, Joy of Fishes. (3+ / 0-)
      Recommended by:
      AnnieJo, cosette, kmbaya

      I imagine there are many who will find Katie's name familiar, but who had no idea of her wonderful story. I knew a little bit about how the Waiver came to be, but no idea about Katie and her Mom's further advocacy and organizing activities. This is an amazing story and it is an honor for me to be able to share it here.

  •  God Bless (3+ / 0-)
    Recommended by:
    WakeUpNeo, AnnieJo, kmbaya

    and God Bless Tom Harkin

    Peace and low stress .. http://www.dailykos.com/blog/NYS39th

    by mdmc on Thu May 24, 2012 at 04:31:31 AM PDT

    •  Thank you, mdmc, and am in total agreement. (1+ / 0-)
      Recommended by:
      AnnieJo

      I am not from Iowa, but have met Senator Harkin several times and have worked with his staff on issues impacting many lives across our entire Nation. He has earned my respect and gratitude over many years; and I believe his comments about his "friend Katie" (his words) come straight from his heart.

  •  WakeUpNeo, thank you for honoring (0+ / 0-)

    the life of Katie & her parents with this loving tribute.

    The courage & tenacity of the Becketts provided countless parents & others the hope & encouragement to be advocates for those with disability.  

    There are two stories here of empowerment & self determination & advocacy.

    Many may never know of the tireless work by Katie's parents to bring about change or fully realize the magnitude of their determination in this & in providing the tools necessary for their child's (Katie) self empowerment.

    Everyday people; legendary heroes.  Who I had the priviledge to once meet & who have my eternal gratitude.

    Eternal gratitude.  For every parent that I once provided the Deeming Waiver info to in a professional capacity.  

    And then eventually for my own child.

    Katie Beckett lives on-in the half million children & their families.  In the countless future children & their families who will benefit & know peace & hope because of Katie Beckett.
     

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