How Disabled Americans Are Pushing to Overhaul a Key Benefits Program

Once, that recipient said, she was too sick to leave her home for two months, and because her daily expenses fell, her bank account balance increased to $2,135 from just under $2,000 without her noticing. When the Social Security Administration found out, she had to repay her entire S.S.I. benefit for those months, which took two years.

Organizers of #DemolishDisabledPoverty also want Congress to increase funding for home- and community-based services; eliminate a law that lets companies pay some disabled employees far less than minimum wage; and update Social Security Disability Insurance, or S.S.D.I, which is distinct from S.S.I. but has many similar limitations.

Melanie Waldman, 30, who has lupus, Ehlers-Danlos syndrome and an amputated arm, has been unemployed since leaving a job that was, she said, “wrecking my body.” She receives about $800 a month from S.S.D.I.

She has a background in theater and said she wanted to pursue roles, but would have to ask for lower pay. She is allowed $10,000 per year in outside income and, before she was on S.S.D.I., earned about $13,000 from acting. Even though S.S.D.I. pays less, she can’t afford to lose it because that would mean losing health care.

Mr. Cortland said the current legislative push focused on S.S.I. because it can be changed through budget reconciliation, whereas S.S.D.I., by law, cannot. But he emphasized at the virtual forum last week that advocates would also work to improve S.S.D.I.

The forum, organized by the Century Foundation, included Mr. Bowman and Representative Ayanna Pressley, Democrat of Massachusetts, both of whom urged the roughly 17,000 people watching to pressure Congress and the White House.

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