Cedar Rapids resident Katie Beckett passed away last week, prompting many tributes to the woman whose fluke childhood illness helped change federal policy on caring for the disabled.
As a five-month-old infant, Beckett came down with viral encephalitis in 1978. From her obituary in the Cedar Rapids Gazette:
Katie lived at St. Luke’s Hospital for 3 ½ years in the Pediatric Intensive Care Unit and came home on Dec. 19, 1981, but only after Congressman Tom Tauke and Senators Chuck Grassley and Tom Harkin, and President Ronald Reagan and Vice President George W. Bush pushed to have an exception to Medicaid policy changed. Today, this monumental legislation is still referred to as the “Katie Beckett law” and now over a million individuals who would be living in hospitals or care centers are cared for at home and in their communities.
She was always an advocate for people with disabilities and special health care needs, testifying many times before Congress, and speaking across the country telling her story and making sure people paid attention to “including” people with disabilities in everyday life.
Beckett tried to encourage children with chronic health problems to aim high.
“I’m amazed at the number of parents of children with disabilities who don’t expect their children to get jobs and don’t expect them to go to college,” Beckett said in 2000. “I want to help the parents understand that children with disabilities can be productive members of society.”
But she is best known for her parents’ struggle to care for their young daughter at home. Because of private insurance and Medicaid rules, Beckett’s extended hospital stay as a toddler was longer than it needed to be.
“I was forced to live in a hospital for the first three and a half years of my life because insurance companies would not pay for services to let me live at home,” Beckett wrote the Gazette in 2007.
The federal health insurance program Medicaid took over Beckett’s care after her parents’ private insurance hit [its] $1 million benefit limit. At the time, Medicaid policy required a hospital stay for coverage of the respirator, even though the device could be used at home.
Senators Tom Harkin and Chuck Grassley helped advocate for the Beckett family during the 1980s. Both remembered Katie Beckett in speeches delivered on the Senate floor yesterday. Here are Harkin’s prepared remarks:
“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.”
Here is Grassley’s speech, as prepared:
Floor Statement of U.S. Senator Chuck Grassley
Celebrating the Life of Katie Beckett
Tuesday, May 22, 2012Mr. 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.
I know several families who benefit from “Katie Beckett waivers” today. In one case, that policy allowed a friend to adopt a baby born prematurely with significant health problems. The baby’s medical costs exceeded $1 million within the first few months of life. Without a Medicaid waiver to cover her ongoing care, my friend’s family faced the choice of not adopting this child, or adopting her and forgoing all future health insurance coverage for the two adults and two children already in the household. (Their private insurance policy had a $1 million lifetime cap for the family, not for each individual.)
Many parents whose children receive these waivers may be unfamiliar with Beckett’s story. Although chronic illness and disabilities can be challenging under any circumstances, we can all be grateful that parents in the U.S. no longer have to choose between keeping their families together and meeting their children’s medical needs.