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.
asset limits
During times of rising inflation, we are told that it is important to reduce consumer spending. However, what does that mean when the law prohibits you from saving money? On 8 million people in the country they 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 pair no more than $3,000, with some exceptions. These limits have been in place since 1984, when gasoline cost $0.83 a gallon and milk cost $1.89 a gallon. But there is hope for change. the bipartisan Savings Penalty Elimination LawA proposal in the last Congress by Senators Sherrod Brown (D-Ohio) and Rob Portman (R-Ohio), would have increased the individual asset limits for Supplemental Security Income from $2,000 to $10,000 and for a family from $3,000 to $20,000.
Health insurance
Despite rumors that cuts to Social Security and Medicare are off the table, the same cannot be said for Medicaid. The proposed cuts to Medicaid would be disastrous for people with disabilities and their families. States participating in Medicaid expansion see increases in employment rates for people with disabilities because enrollees are not required to commit to a disability to work to access health insurance. However, the transition to work requirements have the opposite effect. Job requirements force people to hold a full-time job or risk losing health insurance. Some disability groups are typically exempt, but cancer survivors, people with severe mental illness, or the chronically ill community are generally not excluded from the requirements. Given the Impact of prolonged Covid and the challenges of being diagnosed (and pressure from insurance companies not to diagnose people), these people are also likely to be subject to work requirements. Accounting for the local economy, season, a person’s background or education is not considered. People with disabilities who are more likely to work part-time would find themselves without health care. The job requirements also address family members of people with disabilities who can perform caregiving tasks. So again, disabled people are forced to work until they die to maintain their health care.
Alice Wong recently shared with me how Medicaid Estate Recovery the rules could mean that the government could take what a person with a disability had in savings at the time of death to “recover” the costs of services provided. This eliminates any access to generational wealth or retirement for Medicaid recipients.
myCome as a college-educated, Senate-confirmed, philanthropist diplomat, Judy HeumanLike hundreds of thousands of other people with disabilities, she lived in fear that she would not be able to afford the supports and services she needed to live in the community. Until policies are revised to focus on those who need support, we will continue to see disabled people forced to choose between working to death or giving their lives to an institution.