Judy Heumann, 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.(Photo by Shuran Huang for The Washington Post via Getty Images)
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.
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.
During times of increased inflation, we are told that it is important to slow down consumer spending. However, what does that mean when you are prohibited by law from saving money? Over 8 million people in the country are prohibited from saving because they are recipients of Supplemental Security Income. Currently, an individual on SSI cannot have more than $2,000 in assets, and a couple no more than $3,000, with some exceptions. These limits have been in place since 1984, when gas was $0.83 a gallon and a gallon of milk was $1.89. But there is hope for change. The bipartisan Savings Penalty Elimination Act, proposed in the last Congress by Senators Sherrod Brown (D-Ohio) and Rob Portman (R-Ohio), would have raised individual asset limits for Supplemental Security Income from $2,000 to $10,000 and for a family from $3,000 to $20,000.
Despite rumors that cuts to Social Security and Medicare are off the table, the same cannot be said for Medicaid. Proposed cuts to Medicaid would be disastrous to people with disabilities and their families. States that participate in Medicaid expansion see increases in the employment rates of people with disabilities because enrollees are not required to commit to an inability to work to access health insurance. However, the move to work requirements has the opposite effect. Work requirements force people to maintain a full-time job or risk losing health insurance. Some disability groups are typically exempt, but cancer survivors, people with serious mental illnesses or among the chronic illness community are usually not carved out of the requirements. Given the impact of long Covid and the challenges of getting diagnosed (and pressure of insurance companies to not diagnose people with it), it is likely these individuals will find themselves subjected to work requirements as well. No accounting of the local economy, the season, a person’s background, or education is considered. People with disabilities who are more likely to work part-time would find themselves without health care. Work requirements also target family members of people with disabilities who may perform caregiving duties. So, again, disabled people are being forced to work until they die to maintain their health care.
Recently, Alice Wong shared with me how Medicaid estate recovery rules could mean that the government could take whatever a person with a disability has in savings upon their death to “recover” the costs of services provided. This eliminates any access to generational wealth or retirement for Medicaid recipients.
Even as a college-educated, Senate-confirmed, philanthropist diplomat, Judy Heumann, like hundreds of thousands of other people with disabilities, lived in fear of not being able to afford the supports and services she needed to live in the community. Until policies are revised in such a way that centers those in need of supports, we will continue to see disabled people forced to choose between working themselves to death or giving up their lives to an institution.
Rebecca CokleyRebecca Cokley is the program officer for the US Disability Rights program at the Ford Foundation. She was the cofounder and director of the Disability Justice initiative at the Center for American Progress, served as the executive director for the National Council on Disability, and oversaw diversity and inclusion efforts for the Obama administration.