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The disability community is reeling this week over the passing of Judith Heumann. Judy, a polio survivor, 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 globally. She served in both the Clinton and Obama administrations, and pioneered roles 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 that she needed to stay in the community and avoid being forced against her will into an institution or nursing home.

As Rebecca Vallas at the Disability and Economic Justice Collaborative says, “Disability is a cause and consequence of poverty.” Rules and regulations regarding Social Security, the Fair Labor Standards Act, the Workforce Investment Act, and Medicaid govern every decision people with disabilities can make about their economic status, from what college to attend to whether to marry.

Research from the National Disability Institute 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 at twice the rate of nondisabled people. 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 in one year while waiting for benefits approval. Not surprisingly, these statistics become even more stark when incorporating race, gender, and 2LGBTQIAP identities.

The problem with all of this is that there is no “problem.” Rather, the system is working exactly as it was designed to work. And because of gargantuan gaps in our social insurance 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 thinking about home care services, not people with disabilities. But this segment of the population includes anyone who is not part of the labor market, as well as some who are. The services provided by HCBS may include dressing and bathing, food preparation, cleaning and laundry, everyday tasks that disabled people need assistance with to be able to live in their community. Those who do not receive HCBS mostly live in nursing homes or institutions. As of 2016, there were over 656,195 people waiting on waivers to allow them to move into the community. But even if they get a waiver, our society is not prepared with the needed infrastructure to support these individuals in living in the community. There is not enough accessible housing or transportation to meet the needs of disabled people in the community, nor a workforce that’s trained or paid enough to supply services to meet the needs. Multiple attempts at increasing the budget for HCBS have failed in various pieces of pandemic response legislation. So people with disabilities are forced to crowdfund. One-third of Go Fund Me campaigns are designed to fund a health-related expense. In the summer of 2022, the disability community worked to crowdfund for a trust set up to support writer-activist-oracle-cyborg Alice Wong, who upon returning home from an extended hospitalization faced involuntary institutionalization without financial support.




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#Work #Die #Retirement #Plan

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