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    • #10959
      Kevin Schaefer
      Keymaster

      Hello all. I wanted to get the conversation going here by asking everyone about their work situation.

      For those who are employed either full-time or part-time, what is your occupation? Do you still retain disability benefits such as Medicaid or SSI? Do you work from home or in an office? If you travel for work, who takes you?

      If you are looking for work, what is it you want to do? What are your main obstacles? Do you have either an associates or bachelors degree?

      I’d love for us to be able to help each other out in this department. Finding employment can be difficult for individuals with disabilities, and I’d like for us to share tips with each other for how to work around the system. Any input is welcome.

    • #10976
      DeAnn R
      Keymaster

      Certainly difficult to find employment when you have a lot of things you have to work around such as personal cares and travel.  Luckily I am able to work from home and have a flexible schedule (I do payroll for a small company.)  When I did work outside the home I would schedule the local transportation bus that had a lift.  Tricky part was bundling up in the winter.  I just wore layers and forwent the winter coat as I didn’t have someone who knew how to take it off or put it back on when I left.

      Currently I qualify for SSDI instead of SSI that fluctuates with income.  Funny, I just had to verify my last 10 years of income for the SSA, and verify I was still disabled.  Nope, even with Spinraza I still can’t wipe my own ass (this is the adult group right?)  Anywho, as far as medical coverage since I did work for a certain period of time I qualified for Medicare and my income is low enough to have Medicaid as secondary.  Somehow that was the magical combination to start Spinraza.

      • #10977
        Kevin Schaefer
        Keymaster

        Thanks for the input! Yes transportation is indeed a major issue. I’ll probably do a separate discussion topic about that.

        And yes it’s tricky navigating the system to figure out how much work you can do while still maintaining your benefits. Thanks for sharing!

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