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  • Student with SMA Forced to Choose Between Internship and Proper Care

    Posted by kevin-schaefer on May 23, 2018 at 12:30 pm

    I came across this story this morning. Sadly, it hit way too close to home. Myself and many other people with SMA have been stuck in similar situations as this woman here.

    Anna Landre is a student at Georgetown University, and she also has SMA. She was recently offered a great summer internship, but may have to decline it because it would interfere with her health benefits.

    This article states that the “New Jersey Division of Disability Services would penalize Landre for holding the internship, one that pays $14 an hour, by significantly reducing the aide’s hours.”

    It’s a sad world we live in, but it’s true that the majority of state governments in the U.S. place restrictions on how many hours disabled citizens can work if they’re receiving government services such as Medicaid. It’s like we’re punished for trying to contribute to society.

    I work full-time and am fortunate enough to keep Medicaid. Nevertheless, a significant portion of my income goes directly to paying for caregiver costs that aren’t covered by insurance. The government basically chopped my hours in half when I turned 21, because apparently I don’t need as many hours as an adult. If I were to move out of my parent’s house, I’m not sure I’d be able to afford everything. I pretty much require 24/7 assistance in order to keep working and living my life, and it’s still not a priority for our government to help citizens with disabilities.

    This is a dilemma which many people with disabilities find themselves in, and I simply want to bring attention to this issue. I’m fortunate enough to be working and to have more independence than I used to, but there’s still more we can be doing to be recognized as productive citizens. We need our voices heard, and for our politicians to do away with these outdated policies.

    To read more about Anna Landre’s story visit NJ forces disabled Howell student to make brutal choice: internship or health aide money“.

     

    kevin-schaefer replied 5 years, 6 months ago 3 Members · 4 Replies
  • 4 Replies
  • ryan-berhar-2

    Member
    May 23, 2018 at 6:18 pm

    This is one thing  that really makes me angry. We have little incentive to work because our benefits can go away. This applies not only to Medicaid, it also goes for SSI. If you make a certain amount of income, you will lose your benefits. My goal is to be completely unreliant on the government.

    • kevin-schaefer

      Member
      May 23, 2018 at 7:00 pm

      It’s a big problem for adults with disabilities everywhere. I just wrote a column about it. I desire to be unreliant on the government as well, though that shouldn’t be the only option.

  • deann-r

    Member
    May 24, 2018 at 11:19 am

    It’s sad when you have to be concerned if a job will mess with your benefits.  Most people are thrilled with a raise or holiday bonus.  I was always like, great will that put me over the limit?  There’s no way I could pay for services I receive out of pocket even if I could work full time.  For me a job keeps me busy, but is also a way to feel like I contribute to society at least a little bit.  I actually do some volunteer work just to avoid the hassle of what the little bump in income would do.

    • kevin-schaefer

      Member
      May 24, 2018 at 12:17 pm

      I hear you. It’s a tough balance to find, but I’m glad there are still ways we can contribute.

      My hope though is that the more we bring this issue to people’s attention, the more our society will recognize it as a problem that needs to be solved.