Remembering Katie Beckett

Thursday, May 24, 2012 View Comments Autism Speaks

This post is by Leslie Long Director, Housing and Adult Services

Katie Beckett's life cannot be measured in days or months or years.  She died last week at 34. She was supposed to die a long time ago. But in 1981, when she was three years old, President Ronald Reagan changed the Medicaid rules and allowed Katie to be cared for at home, instead of in a cold, institutional hospital. Katie had contracted viral encephalitis when she was five months old and went into a coma. The complications were awful. When she awoke, she couldn't breathe without a ventilator. And she was partially paralyzed.

 

The regulations dictated that she receive treatment in the hospital. Compassion is not measured by ideology or politics written in stone. President Reagan made Katie an exception. Medical treatments and improvements kept her alive and improved her life. And so we cannot measure a life or human need by the calculus of political rigidity.

 

There are approximately over 220,000 individuals with autism and other developmental disabilities across the country waiting to get services under a Home and Community-based Medicaid Waiver.  Each one of these individuals has a compelling story on why they need support to live in the community. Yet no one is listening.  And as we see the prevalence of autism increase, the demand for this type of support with diminishing state resources will only grow.  As steep as the economic landscape is, people with developmental disabilities are being pushed closer to the cliff and the safety net seems to be misplaced. 

 

So we must decide now how we want our history to be written.  Do we want to be remembered for valuing people with disabilities throughout their lifespan, even though it may come at some cost to society? I do. Because people with disabilities matter.   

 

 

Katie Beckett

 

http://www.npr.org/2010/12/02/131105242/milestones-in-long-term-care-policies