It was with a heavy heart that I read the news that Katie Beckett had passed away.

As many Say Ahhh! readers know, Katie Beckett and her mother Julie helped create the home and community based waivers known as the “Katie Beckett waivers”.  They made it possible for those with long-term disabilities or complex medical needs to leave institutional care and maintain their Medicaid coverage.

Katie she was only 5 months old when she contracted a brain infection and went into a coma.  The doctors were able to save her life but they weren’t able to save her from spending most of her first three years of life in the hospital.  Due to the lifetime caps on her parent’s private health insurance, their coverage ran out but, fortunately, Medicaid was there to step in.  However, under the rules at that time, Katie would lose Medicaid coverage if she left the hospital even though caring for her at home would cost one-sixth of what it cost to keep her in the hospital.

Katie’s mom prevailed upon her local Congressman in Cedar Rapids, Iowa who pressed the case all the way to the White House.  President Reagan took up her cause and soon the “Katie Beckett waiver” came into being paving the way for a more compassionate and commonsense approach to helping families care for children with complex health care needs and long-term disabilities.

With the support of her family at home, Katie flourished.  She started advocating for people with disabilities at the age of 10.  While other classmates were busy being kids, Katie was speaking in front of Congressmen, Governors, Presidents, medical professionals and parents of children with special health care needs. Working with Family Voices, Katie and her mother started 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.  Katie also graduated from college and worked for various organizations but she never stopped advocating for people with disabilities.

In 2002, Katie wrote:

 “Advocacy is in my blood and in my soul. I care too much about the people I help, to push them aside. For me, it’s not about the attention I’ve gotten over the years, it’s about the kids and families I have helped by being a role model of sorts. They see me succeed and that helps them to do the same.”

HHS Secretary Kathleen Sebelius called Katie “an inadvertent pioneer in the civil rights movement for people with disabilities” and the “inspiration for regulations that have allowed more than 500,000 disabled children to live at home since 1981. ”

Senator Tom Harkin called Katie an inspiration to an entire generation of young people with disabilities by “showing that an ordinary person can accomplish extraordinary things through great spirit and determination and persistence.”

On the Senate floor this week, Senator Grassley paid tribute to Katie saying:

“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. “

On behalf of all of us here at Georgetown University’s Center for Children and Families, I would like to send our condolences to the Beckett family and thank them for sharing their extraordinary daughter with the world.  We’ll miss Katie and vow to continue her legacy in working for compassionate and commonsense health care coverage for all.

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