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    • #11958
      Kathleen Sheffer

      People with Disabilities Want to Work

      SMA News Today columnist @kevin-schaefer writes succinctly about the barriers preventing people with SMA from joining the workforce. In this article, he explains the systematic oppression of people with disabilities who receive government assistance. In most cases, potential earned income (that would disqualify a recipient from assistance) would not be enough to replace the value of the assistance.

      Like Kevin, I rely on Medicaid to cover health-related expenses. I will lose my insurance if I earn more than $30,000 annually. I can’t retain any assets, including savings for retirement. This makes working toward financial independence nearly impossible. If I earn enough to buy my own insurance plan and I lose Medicaid, I worry I might get too sick to work again and have to start the application process all over, relying on my parents in the interim.

      Do you agree with Kevin and I that the system de-incentivizes people with disabilities who want to work? Do you receive government assistance for your disability? I would love to hear how you manage your healthcare needs with your desire to work.

    • #12005
      Kaye Norlin

      A person can work and receive benefits (SSA Disability benefits) as long as they do not exceed the substantial gainful activity level set by SSA (ttps:// I have seen many people who do not wish to work and jeopardize their SSA income and others who work up to the limit. My daughter is 32, a college graduate, and is getting disability for the first time after I filed for retirement benefits when I hit 66. She works part-time because it is the only employment she has been able to find. She is looking for a full-time job and when she gets one, she has a 6-month trial period before her disability is compromised. I have worked with benefits for people with disabilities for decades as a social worker. With Social Security Disability Income, assets shouldn’t matter; with Supplemental Security Income, assets do matter (everything in excess of $2000).

      I have been very lucky. Since I worked for a social service agency providing services to people with disabilities, they accommodated my needs very well, even when I couldn’t work 40 hours any longer, I restructured my job and they accommodated. I retired in December after 37 years with that employer. I wanted to work more than 30 hours per week but could not, so I essentially phased out my own job which was kind of cool to move into the 21st century with my department. I missed being more hands-on with the clients and I had a tough time learning and sticking to my own limitations. Financially, private sector social services people don’t make much money so I was used to being poor.

      It is tough to deal with all aspects of having a chronic disease that limits your life; trying to decide to work or get benefits should not be a decision anyone has to make. Do I think the system de-incentivizes people to work: sometimes. In all my decades as a social worker and just as a person, I have also seen people abuse the system to avoid work- THANK GOD THEY ARE A SMALL MINORITY. No doubt, we need a better system in this country and people to stop the abuses so people with real needs, like people with PH and other debilitating diseases can get help and still have a bright future.

      • #12006
        Kathleen Sheffer

        Good distinction to make – since I applied for supplemental income when I was 18 and had no prior work credit, I wasn’t eligible for SSDI so my assets (or lack thereof) matter. I wish there were more resources available to help people with disabilities understand the system. My application was rejected twice for stated reasons that had no relevance to my disability and I ultimately had to hire an attorney to argue my case in court.

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