Saturday, May 19, 2012

Family Voices Extends Condolences on the Occasion of Katie Beckett's Passing

Family Voices would like to extend our deepest sympathy to Julie Beckett and Mark Beckett on the occasion of their daughter Katie Beckett’s passing this morning, as well as to Katie’s family, friends, colleagues, and loved ones.  Julie Beckett is one of the founders of National Family Voices and both Julie and Katie have been dedicated advocates for children with special health care needs for decades.

It was in support of her daughter’s in-home medical care that Julie successfully advocated for a waiver of the rules that required children with special health care needs to be in the hospital in order to receive Medicaid funding for acute care. In November of 1981, when Katie was three, President Reagan allowed Katie to go home in time for Christmas and receive her Medicaid-funded treatment at home. At a press conference, Reagan explained the child was being kept in the hospital because of Medicaid rules which forbade paying for her home care, even though the cost to the government would be one-fifth the hospital charges of $10,000 to $12,000 per month. "When we see a case of this kind," Reagan said, "it reveals that hidebound regulations can be a tremendous expense to the taxpayers and do no good for the patient."

Reagan’s intervention set a new precedent, and shortly afterwards the government allowed exceptions in other states so that parents like the Becketts, who made too much money to qualify for Medicaid, could receive at-home coverage of extreme medical costs for their children. This provision became known as the “Katie Beckett Waiver.”

In the three decades since that time, more than a half million children 
have received waivers to get their care at home.
Katie’s illness began at the age of six months when she contracted viral encephalitis followed by a grand mal seizure which sent her into a coma. The encephalitis attached to her central nervous system and caused nerve damage to various parts of her body, most significantly affecting her ability to breathe. She was placed on a ventilator and later a tracheotomy was performed. She subsequently required multiple medical procedures and was completely paralyzed. Although the paralysis itself eventually resolved, she could not breathe on her own at all until she was almost two years old. She continued in hospital care until the age of three, when President Reagan’s historic decision made it possible for her to go home.

Katie was later able to function without a ventilator for hours at a time, although she required some at-home medical assistance each day.

In the Fall of 2002 Katie wrote:

“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 worked helped other kids. I realized that this was something I was born to do, so I was willing to take on the extra attention given to me by other students and teachers when I returned home even if it was embarrassing at times. Being singled out even for doing something so rewarding is uncomfortable and can create tension with other students. It made it difficult sometimes to fit in and just be normal.”

Katie continued her advocacy work throughout her life in support of children with special health care needs. For example, in the fall of 2010, Katie and Julie Beckett presented in Washington, D.C., for a celebration of the 75th anniversary of a provision of the original Social Security Act that set up federal programs to promote maternal and child health.

Katie, then 32, spoke to an audience of children's advocates. She was introduced by Donald Berwick, the head of Medicare and Medicaid, and spoke right after White House senior adviser Valerie Jarrett.
"Just because you reach a certain age does not mean that you are miraculously cured of all the things you have endured," she told the crowd, arguing for an expansion of home and community based care so that people with disabilities have more options to live outside of nursing homes and institutions.

Dr. Sophie Arao-Nguyen, Executive Director of National Family Voices said today:
“Katie was a great role model and quiet warrior whose work helped countless children across the United States. Julie, our prayers and thoughts are with you today as we wish peace for you and Katie, and for Mark, your family, and loved ones, in this moment of Katie’s passing.”

Memorial Service information will be communicated when it is available.

To Read More About Katie:Go to

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