May 22, 2012

Memorial Service for Katie Beckett, Contact Info, Scholarship Fund, Obituary, HHS & AAP Announcements, & NPR Story


Services for Katie Beckett will be held Thursday, May 24 at Teahan Funeral Home, 3100 F Avenue Northwest Cedar Rapids, IA 52405, from 4-8 pm with a vigil at 4. Her funeral will be Friday, May 25 at St. Matthew's Catholic Church, 2310 First Ave NE, Cedar Rapids, Iowa 52402 at 10 am.



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.


Correspondence for Julie Beckett can be mailed to her home address:

2222 First Ave. NE Apt 502
Cedar Rapids, Iowa 52402

or emailed to:



A beautiful tribute to Katie, aired on National Public Radio Saturday, May 19, is available at the link below:



May 20, 2012
Contact: HHS Press Office
(202) 690-6343

From Secretary Kathleen Sebelius on the passing of Katie Beckett

Katie Beckett was a quiet hero and an inadvertent pioneer in the civil rights movement for people with disabilities. When she was only three years old, her family and her doctors wanted her to live at home despite her extraordinary medical support needs. At that time, Medicaid would not cover the cost of her medical services in the community -- only in the hospital. Thanks to her mother Julie's tireless advocacy, in 1982 Medicaid policy fundamentally shifted to allow people with significant healthcare needs and disabilities to receive care at home.

Over the past thirty years, the "Katie Beckett Waiver," a Medicaid program, has provided over a half million children with disabilities the chance to live at home with their families and participate in their comm unities instead of living in hospitals and institutions.

As a result of this change, Katie was able to grow up as a typical young woman living with a disability -- going to college, working as a writer and public speaker, and living an independent life -- and in the course of her journey, Katie inspired a whole generation of young people with disabilities and their families.

Katie will be missed by many across the country, but her determined advocacy, and that of her family, has changed countless lives for the better. Our thoughts and prayers go out to her parents, Julie and Mark, and all in the disability community who mourn her passing.



For Immediate Release: MAY 22, 2012

Contact: Susan Stevens Martin 847-434-7131 (

Statement from Robert W. Block, MD, FAAP,
president of the American Academy of Pediatrics, on the passing of Katie Beckett

"Katie Beckett was a pioneer who changed the way society cares for children with special health care needs. In 1978, when she was 5 months old, Katie contracted viral encephalitis. After three years in a pediatric intensive care unit, she had largely recovered but needed to use a ventilator part of the day. At the time, Medicaid would cover her treatment only if she remained in the hospital. Her mother, Julie Beckett, successfully advocated that children like Katie could and should be cared for at home.

"The resulting legislation created what became known as the "Katie Beckett waiver." Over the past 30 years, more than half a million children with significant health care needs and disabilities have used the waiver to remain eligible for Medicaid while living at home with their families. Through their determination and work, Julie and Katie Beckett changed Medicaid laws to help their family and thousands of others.

"Katie continued to serve as an inspiration to young people with disabilities. She went to college, lived independently and worked as a writer and public speaker. Through the advocacy of Katie and her family, a generation of children with special health care needs have been able to live their lives as independently as possible. The American Academy of Pediatrics is saddened by her death. She leaves a lasting legacy as a hero and champion for children, youth and adults with disabilities."

Katie's funeral will be Friday in Cedar Rapids, Iowa.



Mary Katherine "Katie" Beckett passed away at St. Luke's hospital on Friday, May 18, 2012. Known as Katie to many, her life and legacy will long be remembered.

Born March 9, 1978 to Mark and Julie Beckett at St. Luke's, she will be remembered by many who passed through those doors; Dr.'s, nurses, therapists, food service workers and cleaning staff who all loved and cared for Katie and her special needs. Her parents are most grateful for them in their instrumental role in her young life.

Katie is survived by her father, Mark William Beckett and stepmom, Linda and stepsister, Chelsea Lee; her mother, Julie Beckett; grandpa, Larry Beckett, & step-grandma, Maxine Houser; "Irish" family aunt, Mary Barbara Lenz of Dubuque, Iowa and cousins, Laura (Gustavo), Lisa & great niece, Frances, and Dr. Joe & Hannah; uncle, John Joseph O'Connell III (Mary Jo) and cousins, Shannon (Nick) Lampe, John IV (Angie) O'Connell & great niece, Abby, Ashleigh and Casey O'Connell; aunt, Maureen (Chris) O'Connell Barry and cousins, Shaun (Ashley) & great niece Sophie, Kelly (Adam) Fabor & great niece, Raven, and great nephew Duncan and Bailey (Matt Keister); uncle, William Ryan (Mary) O'Connell and cousins, Ryan and Colton; uncle, Michael (Brenda) O'Connell and cousins, Michael Jr. and Zachary John O'Connell, and Amanda DeDecker; uncle, Patrick (Sheryl) O'Connell and cousins, Candace (Ryan) Murphy and Brandon O'Connell & great niece Kaylyn; uncle, Jamie (Dawn) O'Connell and cousins, Megan and Shamus O'Connell. They will all live to support her memory.

Katie lived at St. Luke's Hospital for 3 and ½ years in the Pediatric Intensive Care Unit and came home on December 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.

Katie was a writer, dying before she could complete her novel. She had a quick wit and a joyful presence. Always tiny in stature, but with an intellect that warned you to tread lightly. She will be greatly missed by her close friends Beth, Julie, Erin, Shaun, Cassie and Jessica as well as her family and the many people who benefited from the work she did. She leaves behind her "children", the many stuffed animals who were her greatest confidants. She will miss Red Lobster, Barnes & Noble, Starbuck's, Joe Raposo from Dream Street, WWE wrestling, and her unending love for Shaun Veers.

Waiting to greet her at the golden gates are her grandparents, Peggy Beckett and John and Barbara O'Connell, her beloved Dr. Darrel Dennis and her other "parents", Polly Egan Arango and David Woll.

Services will be held Thursday, May 24 at Teahan Funeral Home from 4-8 pm with a vigil at 4. Her funeral will be Friday, May 25 at St. Matthew's Catholic Church at 10 am.

According to her wishes her body will be donated to the University of Iowa to help healthcare workers learn from her experience. Even in death, she wanted to give back.