Katie Beckett’s Legacy Lives On – Say Ahhh! A Children’s Health Policy Blog

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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