Once, this recipient said she was too sick to leave home for two months, and as her daily expenses fell, her account balance went from just under $ 2,000 to $ 2,135 without her realizing it. When the Social Security Agency found out about this, they had to repay all of their SSI benefit for those months, which lasted two years.

The organizers of #DemolishDisabledPoverty also want Congress to increase funding for home and community-based services; Abolish a law that allows companies to pay some disabled workers far less than the minimum wage; and update Social Security Disability Insurance or SSDI which is different from SSI but has many similar limitations.

Melanie Waldman, 30, who has lupus, Ehlers-Danlos syndrome and an amputated arm, has been unemployed since she left a job that she said “destroyed my body”. She receives about $ 800 a month from SSDI

She has a background in theater and said she wanted to pursue roles but would have to ask for a lower salary. She is allowed to make $ 10,000 a year in external income and, prior to joining SSDI, earned about $ 13,000 from acting. Although SSDI pays less, she cannot afford to lose it as it would mean loss of health care.

Mr Cortland said the current legislative initiative is focused on SSI because it can be changed through a budget reconciliation while SSDI cannot legally. But he stressed on the virtual forum last week that proponents would also be working to improve SSDI

The forum, organized by the Century Foundation, was attended by Mr. Bowman and Rep. Ayanna Pressley, a Massachusetts Democrat, who both urged the 17,000 or so audience to put pressure on Congress and the White House.