“Work until you die” is not a retirement plan End-shutdown

The disability community is reeling this week from the death of Judith Heumann. A polio survivor, Judy spent most of her 75 years advocating for the rights of people with disabilities, in school, in employment, in foreign policy, in the United States and around the world. She served in the Clinton and Obama administrations, and was a pioneer at the World Bank and the Ford Foundation. But the reality is that Judy, like so many disabled people, had to work until her death to maintain the quality of life she needed to remain in the community and avoid being forced into an institution or nursing home against her will. .

Like Rebecca Vallas in the Disability and Economic Justice Collaborative says: “Disability is both a cause and a consequence of poverty”. Rules and regulations related to Social Security, the Fair Labor Standards Act, the Workforce Investment Act, and Medicaid govern all decisions people with disabilities can make about their financial situation, from which college to attend to whether to get married. .

Research from the National Institute of Disability shows that households with a person with a disability that limits their ability to work have approximately $17,000 in additional annual expenses than a comparable household without a person with a disability. People with disabilities experience poverty in double the rate of people without disabilities. The disability community experiences higher levels of homelessness, food insecurity, and unemployment than people without disabilities. And before the global pandemic, more than 10,0000 people with disabilities died within a year while waiting for benefits to be approved. Not surprisingly, these statistics become even stronger when race, gender, and 2LGBTQIAP identities are incorporated.

The problem with all this is that there is no “problem”. Rather, the system is working exactly as it was designed to work. And because of the gigantic gaps in our social security landscape, “work until you die” has become the retirement plan for so many disabled people.

Home and Community Based Services

Most people think of seniors when they think of home care services, not people with disabilities. But this segment of the population includes anyone who is not in the labor market, as well as some who are. Services provided by HCBS may include dressing and bathing, food preparation, cleaning and laundry, everyday tasks that people with disabilities need help with in order to live in their community. Those who do not receive HCBS live mostly in nursing homes or institutions. As of 2016, there were more than 656,195 people waiting for waivers that allow them to move into the community. But even if they do get a waiver, our society is not equipped with the necessary infrastructure to help these people live in the community. There is not enough affordable housing or transportation to meet the needs of people with disabilities in the community, nor is there a workforce that is sufficiently trained or paid to provide services that meet the needs. Multiple attempts to increase the budget for HCBS have failed in various pandemic response laws. So people with disabilities are forced to crowdfund. One third of Go Fund Me campaigns They are designed to finance a health-related expense. In the summer of 2022, the disability community worked to crowdfund a trust created to support writer, activist, oracle, and cyborg Alice Wong, who upon returning home from a lengthy hospitalization faced involuntary institutionalization without financial support.

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