Sunday, May 20, 2012

Thank you Katie Beckett

A 34-year-old woman died in Iowa on Friday. I did not know her; in fact, I did not even know she was from Iowa until Friday. Nonetheless, when I heard of her passing, I felt both sad for and very grateful to her and her family. The woman’s name is Katie Beckett and I firmly believe that I have her and her parents to thank for the quality of life that Maggie has today.   

Katie Beckett changed the life of many individuals who have disabilities and chronic health care needs. She spent the first three years of her life in the hospital because of the care she needed.  Her parents wanted her home where she could be part of the family, but their health insurance benefits were exhausted. The only way Katie cold continue to get the care she needed was through government programs  and in order to qualify for those she had to be in an institution.   A child living in her parents  home would not qualify for government programs  if the parents income was above poverty level.  If that same child was  institutionalized, though, the benefits were available to them regardless of parental income.  Under government programs, individuals who needed ventilator care, or trach care or other constant skilled medical care could only be served in an institution such as a hospital or skilled nursing facility. Neither quality of life nor life expectancy was very good in those places.  

The Becketts fought the system. They approached their Congressman and pointed out that Katie’s care could be done better and cheaper at home. The Congressman,  Tom Tauke of Dubuque Iowa,  listened.  I know how long it takes to affect even small change, and this was anything but small.  This proposed change in the way the government cared for its most vulnerable citizens.   It meant changing an entrenched system. Change happened and the “Katie Beckett Waiver” became federal law was a waiver from the requirement that one had to be institutionalized to receive government benefits.  The income of the parents was not considered, the focus was on the needs of the child. That waiver allowed individuals to be cared for in their own home instead of in institutions.

It took a while for all of this to trickle down to the various states.  I don’t know for sure when it hit California, but I know that it hit Maggie 15 years ago and at that time they told me she was the first child in San Francisco to complete the process.   When Maggie was about three she was “institutionally deemed,” which is the California version of the Katie Beckett waiver.   That meant, as far as the State of California was concerned, Maggie was entitled to all the benefits and programs of those individuals in institutions.  Maggie became eligible for medi-cal, California’s version of Medicaid. That opened to door for nurses at home as well as protection for things our insurance did not cover.  Maggie’s supplies and equipment were easier to access. Though we still had a ton of things to worry about with Maggie, we no longer had to worry about having her live in a hospital.  Life became a little bit easier.

 I have no doubt that Maggie owes not only her better quality of  life but her very survival to this program and to the Beckett family who stood up to make this change. I am eternally grateful to them and to Katie who was at the center of the storm.  I offer my sincere condolences to them on Katie’s passing.

Rest in Peace, Katie.  And thank you.

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