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    Adapting to Life Outside Our Home With SMA

    I once heard a joke that a woman’s mind is like an Internet browser that has 1000 tabs open and running at once. I laughed at the time, but came to realize that if I didn’t actually feel like this before hearing the short acronym “SMA,” I most certainly do now.

    I spend much of my time pre-planning and thinking of possible problems that we may run into because of the kids’ diagnoses. I think many other SMA parents do this as well. Prior to our lives with SMA, we didn’t realize just how inaccessible the world is to those who are differently-abled.

  • This topic has 3 replies, 3 voices, and was last updated 5 months, 2 weeks ago by Ryan Berhar.

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      • #19433
        DeAnn R
        Keymaster

        https://www.app.com/story/news/health/2019/06/17/nj-medicaid-anna-landre-georgetown/1475982001/?fbclid=IwAR3pHlOSQp0OZ28Sg9_0zfuGZIBi5LzcUJYfMmEnPz2eIzRMUIOvUOWqxBU

        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
        Participant

        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
        Keymaster

        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
          Participant

          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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