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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 10 replies, 4 voices, and was last updated 3 months, 2 weeks ago by Ryan Berhar.

    • Author
      Posts
      • #20134
        Ryan Berhar
        Participant

        Hey everyone, check out the dynamic arm support by Kinova Robotics—the same company that makes the JACO robotic arm. This device attaches to your arm and helps neutralize the forces of gravity, allowing those of us with weaker arms to complete tasks such as eating, drinking, brushing hair, brushing teeth, and typing on a keyboard.

        This can be mounted to either a wheelchair or table. It might be a good alternative to the JACO, as it appears less invasive, and I assume it’s more affordable. I’m going to reach out to Kinova to get more information, and this will likely be the subject of my next YouTube video.

        https://www.kinovarobotics.com/en/products/assistive-technologies/dynamic-arm-supports

      • #20150
        Rachel Markley
        Participant

        Hey Ryan! My OT was looking into this for me. If you find out cost can you let me know please?

      • #20152
        DeAnn R
        Keymaster

        Need to know more! Keep us posted with what you find out. I’d be interested for sure.

      • #20153
        Ryan Berhar
        Participant

        I will definitely let everyone know once I learn more.

        • #20193
          DeAnn R
          Keymaster

          I contacted the company to learn more, so we’ll see. Ryan and Kevin, I name dropped hoping for a quicker response. Hope you don’t mind.

      • #20198
        DeAnn R
        Keymaster

        Looking forward to this video Ryan. Here’s what I’ve found out. Out of pocket this device costs $28,400! That’s 1/3 of the cost of my entire house! So far they’ve had some success getting it covered by private insurance and managed Medicare/Medicaid. Straight Medicare/Medicaid won’t even entertain the thought (surprise, surprise that’s my situation.) Vocational Rehab is another funding option, but is a lengthy uphill battle. Fundraising is an alternative as well, but I can’t fathom raising that kind of money.

        Here’s my dilemma, do I still try to set up a demo even though there’s no way I can possibly afford it? I’d feel bad wasting their time, but I’d love to give it a try. I know I’d fall in love with it. Maybe it’s like the Say Yes to the Dress scenario, don’t even try it on if you can’t afford it. Sigh.

        • #20202
          Ryan Berhar
          Participant

          I emailed and have not heard back yet. That’s still pretty pricey. I’d definitely do a demo for either this or JACO. You might even be able to try both. Hardly anyone can “afford” these devices, and insurance probably won’t cover them, but you can absolutely fundraise. I know it probably seems insurmountable, but it’s not. I raised $53,000 in two months, and Kevin did it as well.

        • #20210
          Rachel Markley
          Participant

          DeAnn, that’s why my OT and I decided not to demo. She was afraid if I demoed and it even remotely worked, insurance would go for it versus Jaco and Jaco would allow me to do way more.

      • #20334
        DeAnn R
        Keymaster

        Hey guys, I’m so excited, I have a demo scheduled for September 24th! Funding may be a possibility as I guess Minnesota Medicaid has covered them. Fingers crossed!

        • #20335
          Ryan Berhar
          Participant

          Congrats! I was told that insurance is covering them about 50% of the time, which I was pleasantly surprised by. Good luck.

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