Disability benefits (including Supplemental Security Income, or SSI) provide critical support for families affected by a neuromuscular disease. However, stringent and outdated rules around maintaining eligibility can create barriers for people with disabilities looking to access these programs.
MDA wants to hear from the neuromuscular disease community – what barriers have you encountered in accessing or maintaining SSI benefits? We want to know how these barriers impact your life.
Sharing your story is voluntary. By submitting your story, you are giving the Muscular Dystrophy Association permission to use your story in our advocacy work. We can use your stories when meeting with and sending letters to lawmakers to help them understand the impact of policies on their constituents. Real stories from advocates often drive positive policy changes! We will contact you before publishing any details of your story and will never use your name without your permission. If interested in further advocacy related to this issue, please contact advocacy@mdausa.org.
1.
What financial decisions have you needed to make to stay under the asset limit? How would those decisions be different if the asset limits were raised? How would life be different if the asset limits were raised?
2.
How have asset limits impacted your work schedule? Have you needed to turn down employment opportunities in order to maintain benefits?
3.
Have you received an overpayment notice from the SSA? If so, what was the amount? Did you receive an overpayment notice after reporting changes to income and if so, how long after you reported those changes did you receive the overpayment notice? How did it impact your mental or physical health, and what steps did you take upon receiving the notice? Did you appeal and if so, what was your experience?
4.
How has the asset limit impacted your ability to save? Have you encountered challenges during emergencies due to the low asset limit? How does the low asset limit impact your feelings about your financial security in the future?
5.
Did you lose or have a reduction in your SSI benefits after getting married? Have you considered or chosen not to marry in order to maintain benefits? What has been the impact on relationships in your lives?
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