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LONG-TIME INFONET READER TELLS HER STORY

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More than 200 advocates with disabilities came to the Capitol on February 24 to participate in a rally against the state's decision to privatize its Medicaid managed care system.  At the same time, Senators hosted a listening post to give advocates another opportunity to discuss their concerns about the changes ahead.  One of those advocates was Barb Faber, who has been an infoNET reader for two decades. 

Barb spoke to an over-flowing room, one of dozens of people who boldly sat in front of legislators, cameras, and news reporters to tell their highly personal stories.

“I’ve been working since I was 16," Barb told the room. "And I’ve been working for Wells Fargo and the Independent Living Center since 1994.  I met a man who I married, and we were together for 17 years." 

At this point, Barb choked up.  "He was my care provider, he cared for me and everything around us."  Barb told how her soulmate died, and how everything changed for the woman who had been living successfully and independently for decades.  "My mom and dad couldn’t take care of me, so they put me in a nursing home, then a group home. Made it tough to continue to work."

Because Barb needs about 130 hours of support to maintain her independence, she is concerned that managed care will think she is better served in a group home or somewhere where it will make it tough for her to continue to work.  "I don’t have regular insurance since I qualify for Medicaid and Medicare, and my county will not pay for my 24-hour care," said Barb.  So what is it that she wants from legislators?  "To provide me with the service that you would want for your kids.  We need to make sure I’m not the only one out there going thorough this uncertainty."

Legislators were clearly moved by her story.  And you might think that this story ends there, but it does not.  Yes, legislators do remember those stories, and that's why we are like a broken record, reminding you to tell them! 

During debate on the Medicaid managed care oversight bill this week, Sen. David Johnson referenced Barb's emotional testimony.  

"I want to go back to the two hours of intense testimony down in room 116 when we had Iowans with disabilities traveling from all over the state," said Sen. Johnson. "I just want to put a face on this because we talk alot about the money.  It's a lot of money, but let's narrow it down to Barb and her high-tech wheelchair, who comes up to the microphone and tells us about the joy of getting married and the agony of her husband passing away.  And  her happiness that she got the training and kept her health up and got a job at Wells Fargo.  Amazing story.  She's there because the system worked for her."  

After talking about other advocate stories Sen. Johnson concluded, "it was just overwhelming."  Those advocate stories can be seen here