July 05, 2012

Remembering Katie Beckett's Dedication to Independence & Freedom for Children with Special Health Care Needs


Remembering Katie Beckett's Dedication to Independence & Freedom for Children with Special Health Care Needs

(Photo of Katie Beckett)

"All of our children's lives have so much meaning - but in a way, Katie's life was the embodiment, the public face, of so much that we at Family Voices have worked for."

Betsy Anderson, Former Director, Family Voices IMPACT Project, long-time friend of Katie and Julie Beckett

It has been a month and a half since Katie Beckett passed away on May 18, 2012. And it has been a very significant time in terms of advocacy for children with special health care needs and disabilities. In Illinois, the battle to preserve that state's version of the "Katie Beckett Waiver," (the Medically Fragile and Technologically Dependent waiver), continues to be waged in full force. This past week, we noted the second anniversary of the passing of Polly Arango, Family Voices' co-founder who, like Katie, was a wonderful role model of advocacy and leadership. Finally, last week the Supreme Court upheld the Affordable Care Act in a landmark decision which was, on the whole, a great victory for children with special health care needs and disabilities and their families.

As we celebrate the 4th of July holiday week this 2012, Family Voices invites you to consider what independence means to children with special health care needs and disabilities - and how Katie Beckett was a champion for freedom. And We'd like to offer to you some reflections on Katie and on the memorial and funeral services that marked her passing.

Betsy Anderson, a long-time friend and colleague of both Katie and Julie Beckett, shared these remembrances of those events:

"The Teahen Funeral Home in Cedar Rapids on Thursday, May 24, was filled with talk, memories, tears, and laughter as hundreds of people came during the eight hours of visiting to pay their respects to Katie's parents, Mark and Julie, and members of the family. The show of love, support, and appreciation was overwhelming. Dozens of family members were there, including Julie's two sisters and five brothers, their spouses and children, and Katie's grandfather, Larry Beckett. Many, many neighbors, friends, colleagues, and caregivers from in and out of state were also there. There were displays of Katie throughout the funeral home reflecting her many interests and important relationships - including photos of Katie with presidents, congress people, and friends. At 4 pm the Priest said a few words and many shared their memories and stories of Katie."

On Friday, May 25 the funeral service was held at St. Matthew Catholic Church in Cedar Rapids, and this was where the more formal eulogies were offered. Father Condon, a longtime family friend from St. Matthew spoke, and there were readings by family members. Iowa Senator Charles Grassley gave a eulogy as did Jule Reynolds representing Iowa Senator Tom Harkin.

Family Voices friends, supporters, and colleagues throughout the two days of events included Josie Woll from Hawaii, Donene Feist with son Zach from North Dakota, Linda Rowley with son Mitch Hamilton from Wisconsin, Donna Olsen from Indiana, John Arango from New Mexico, Cindy Smothers with son Tyler, and Betsy Anderson from Massachusetts.

Visitors also included Fan Tait and Mark DelMonte from the American Academy of Pediatrics (AAP), Denise Callarman from the AAP Section on Home Care Parent Advisory Group with husband Tim and son Jake, and Mike Fraser from the Association of Maternal and Child Health Programs.

Here is an excerpt from Senator Harkin's eulogy letter:

'Over the decades, I have been associated with many successful advocates for people with disabilities, but none more determined and courageous than Katie. She testified before Congress, lobbied Governors, and even met with the President of the United States. Advocacy was her vocation and chosen path. But all she really wanted was, in her words, "to fit in and be normal." Indeed, all people with disabilties have that same basic aspiration: to be fully included in their community; and to have the same opportunities, and access to the same places and activities, as other people. Thanks to Katie's good work, millions of other people with disabilities across America are closer to realizing those simple but noble aspirations.'

Read the full text of Senator Harkin’s eulogy letter below.


Senator Grassley's eulogy echoed the remarks he had made about Katie on May 22 on the floor of the Senate. Here is an excerpt from those remarks:

'Never has the word "inspiration" been used more appropriately in describing someone, and today, I am grateful to be able to recognize the inspirational life of Katie Beckett....Katie was the living embodiment of a person with disabilities participating and contributing in society....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 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.'

Read the full text of Senator Grassley's remarks on the Senate floor below.


After the service on Friday, a luncheon was served that had been prepared by members of the church, and literally hundreds of people stayed for the meal. Visitors commented how beautiful and moving it was that the congregation came out in such force to support Mark and Julie and pay their respects.

A Scholarship Fund in Katie's name for a student with a disability or special health care need has been started at Mount Mercy University, 1330 Elmhurst Drive NE, Cedar Rapids, Iowa 52402.

Family Voices has also set up a Memorial Fund in Katie's honor for its Kids as Self Advocates program, which Katie, along with others, helped launch. Donations can be made at www.familyvoices.org.  Please be sure to note that your donation is for this fund.

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Here is the full text of Senator Tom Harkin’s eulogy letter for Katie Beckett.

May 25, 2012

To Family Members and Friends of Katie Beckett,

I will be with you in spirit as you gather, Friday, to say goodbye to our beloved Katie.

Over the decades, I have been associated with many successful advocated for people with disabilities, but none more determined and courageous than Katie. She testified before Congress, lobbied Governors, and even met with the President of the United States. Advocacy was her vocation and chosen path. But all she really wanted was, in her words, “to fit in and be normal.” Indeed, all people with disabilities have that same basic aspiration: to be fully included in their community; and to have the same opportunities, and access to the same places and activities, as other people. Thanks to Katie’s good work, millions of other people with disabilities across America are closer to realizing those simple but noble aspirations.

Dr. Martin Luther King, Jr., once said, ‘Life’s most urgent and persistent question is: What are you doing for others?” During her memorable but too-short lifetime, Katie answered that question in powerful ways, as an agent for change and as a friend who put the needs of others first. 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.

As I said in my tribute to Katie on the floor of the Senate, she was a wonderful person and friend. When I talked to Katie, she always inspired me to do more than I thought I could do – and I know she had that same effect on other people. Katie is no longer with us, but she continues to inspire us. May she rest in peace.

With warm regards,
Tom Harkin
United States Senator
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Here is the full text of Senator Tom Harkin’s remarks on the Senate Floor about Katie’s passing .

REMEMBERING KATIE BECKETT
STATEMENT OF SENATOR TOM HARKIN
CONGRESSIONAL RECORD
UNITED STATES SENATE
May 22, 2012
pp. 3415-3416

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

I am proud to say that Katie was a native Iowan. She was born in March of 1978 and 5 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 and left her paralyzed and unable to breathe on her own. She 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 2 years of age. During that time, she lived in a pediatric intensive care unit. Naturally her family wanted her out of the hospital and home where they could care, support, and love her.

By her third birthday, Katie’s private insurance reached its $1 million cap, and she began to receive Medicaid for her health care. Doctors determined that she could leave the hospital with proper supports at home. However—and here is the catch—Medicaid refused to pay for such care even though it would cost one-sixth as much as hospital care. Medicaid would pay for institutional care but not for care in her own home. She could only receive care in a hospital or nursing home in order to be covered.

Katie’s predicament began to receive attention thanks to the intervention of many people, including then-Congressman Tom Tauke, who was Katie’s Congressman at the time. He began to speak out about this and brought it to the attention of then-President Ronald Reagan and many in Congress. Because of that, President Reagan spoke out about this and 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 is 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 benefited 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 support and services in their own homes rather than in a hospital, nursing home, or other institutional setting.

Under the new program, Katie went home almost 3 full years after she was admitted. At that time she was able to be off her ventilator for 6 hours a day. What happened after her discharge? Well, she attended school. 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 in middle and high school, she testified before Congress, met with Governors, and, as I said, even met with the President of the United States. She served as an intern at Exceptional Parent magazine while living in Boston. That summer between her junior and senior year of high school, Katie learned to manage her own medical care, directing nurses who provided her treatment and managed her ventilator.

Katie considered advocacy to be her vocation and chosen path—in particular, 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-ADA days— the pre-Americans with Disabilities Act days—and being singled out because of her disability. All she really wanted, as she put it, was ‘‘to fit in and just be normal.’’

Katie’s first job was at a music store in a local mall. She got the job, as any young person would, by virtue of her knowledge and interest in music. Katie said, ‘‘Advocacy is in my blood and in my soul,’’ so she looked for work that would allow her to help other people. She volunteered 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 as the receptionist at the Y. 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, IA, in 2001. She later took writing courses at nearby Kirkwood Community College. She 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 families forever. She inspired a host of young people with disabilities by showing that an ordinary person can accomplish extraordinary goals through great spirit, determination, and persistence.

Dr. Martin Luther King, Jr., once said, ‘‘Life’s most urgent and persistent question is: What are you doing for others?’’ During her memorable but very short lifetime, Katie answered that question in powerful ways as an agent for change and as 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.

I see my colleague from Iowa, who has also been a friend of the Becketts and has been very supportive of Katie and all of her work and of Julie Beckett. This has truly been bipartisan, bicameral support for this wonderful family.

Katie’s funeral is this Friday. We are all going to miss her. As I said, when you met Katie Beckett, you were inspired to do more than you thought you could do. She was a wonderful person, and it is tragic that her life came to such a short close, just last week. She is going to be remembered. As I said, she changed so many lives in this country for the better.

I yield the floor.


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Here is the full text of Senator Charles Grassley’s remarks on the Senate Floor about Katie’s passing.


For Immediate Release
May 22, 2012

Floor Statement of U.S. Senator Chuck Grassley Celebrating the Life of Katie Beckett

Mr. President, I come to the floor today to celebrate the life of Katie Beckett. Never has the word “inspiration” been used more appropriately in describing someone, and today, I am grateful to be able to recognize the inspirational life of Katie Beckett.

Mary Katherine “Katie” Beckett was born in Cedar Rapids, Iowa 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 two years old before she could breathe on her own.

Under Medicaid law of 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 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 “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.

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, this is from a piece Katie wrote in 2002 titled “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 like the Family Opportunity Act and Money Follows the Person, we wanted Katie’s perspective, and we depended on 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. Mr. President, 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 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. Katie remains an inspiration.