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  • This topic contains 3 replies, has 3 voices, and was last updated by  Ryan Berhar 1 month, 4 weeks ago.

    • Author
    • #19433
       DeAnn R 


      I remember when this story first came out and I found it so relatable. Glad the issue has been resolved. It wasn’t until after college though that my fight for PCA hours began. My county was requiring that I have a PCA overnight, but weren’t willing to provide hours for it. After going above their heads they were told if they were requiring it, they’d need to cover it. I hate that we have to fight the system just to live our lives. I also feel bad for those who don’t have the ability to put up that fight. Have you had to fight for care? Did you win the battle?

    • #19487
       Ryan Berhar 

      It’s a constant battle. I appealed my care hours a couple years ago, and the judge gave me more hours. They’ve since been reduced, and I’m trying to get more hours again. The other problem is that night care isn’t covered. Well it’s not really a problem now, because I don’t live on my own. But it presents a huge barrier to me moving into my own place.

    • #19498
       Kevin Schaefer 

      I’ve been following this story as well. It’s good that Anna’s situation has finally been resolved, but it’s unfortunate that these policies are in effect for so many others.

      For me personally, I get some government hours, but not nearly enough. I pay a lot out of pocket, which makes moving out pretty unaffordable. It’s a very flawed system.

      • #19509
         Ryan Berhar 

        It’s frustrating because not only do we have this horrible disease, but we also have to pay to have it. Lol

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