by Roshawn Neal

This blog post elaborates on the relationship between disability and poverty. As much as this connection is overlooked, it is prevalent. As a part of the analysis, I will describe the situation that I faced personally but also will explain how this experience influences society. My ultimate aim is to give insight into challenges that many experience at this intersection and to inspire change.

A Diagnosis that Changed Everything

The year 2002 brought very difficult changes to my life. I was diagnosed with Systemic Lupus Erythematosus (SLE), a chronic autoimmune disease that would alter the way I lived from that point on. At the time, I was happy and beyond industrious, flourishing, and independent. Additionally, I was blessed with three handsome boys, and had two sources of employment while also attending an online university for a degree in medical coding. Before Lupus, I could handle everything and had hope of a better future for my family. However, as my health worsened and other debilitating conditions developed, it became impossible to hold on to all of this while living with a disability. My symptoms were such a massive drain on my energy, making me less productive; even a simple thing like socializing, which I used to enjoy, became a chore. As I tried to sail through the storm of the diagnosis, the seemingly straightforward process of keeping a job, attending school, and caring for my family turned into an immense challenge.

I continued working as much and as long as possible and did so diligently until February 2011. At that point, however, I faced one of the hardest decisions I had ever had to make up until then: to apply for Social Security Disability benefits. This was not at all an easy decision to make. I had huge dreams, ambitions of furthering my education, and a vision to create a stable and prosperous life for my children by continuing on my career path. My health had deteriorated significantly, though; I was unable to keep up with my employment and continuing my education was put on hold. At this point, the decision was made that my well-being and health had to come first.

Shortly after I was approved for my Social Security benefits, I was determined not to let this situation define me. I returned to school, excelled in my education, and completed my Bachelor of Science, graduating with honors and Cum Laude status in June 2015. Though all of this was very enlivening, the reality is this: I am living with a disability on a fixed income. The workforce was no longer an option to return to, and to my detriment, that life so envisioned was slipping away from me. I understood that my story was no longer a fight of an individual but a fight of a society.

In 2016, my optimism and the current state of the economy kindled my inner ambitions, so I started a small home-based business. The process gave me direction and independence, which I longed very much. As my disability had progressive tendencies, slowly it dawned on me that even running the business was not possible. My health deteriorated to an extent where even simple tasks seemed burdensome.

The Value of Awareness

Can you imagine how a life-changing event such as a serious health shock can impact the whole organization of one’s life? Everything from financial security to mental health can be affected when a person is confronted with the symptoms related to this condition. This leads us to an important question: How does our society treat individuals who are in situations like the one I have depicted?

It is, therefore, important that one accepts the fact that there are many people with barriers to employment due to disability combined with poverty. This is not by mere coincidence: people with disabilities are likely to experience enhanced healthcare costs, fewer employment opportunities, and many other difficulties that result in more poverty.

For people with disabilities in rural areas the impact is magnified. For instance, acquiring a disability – especially one that may worsen over time – in a rural community coupled with reduced employment opportunities or a lack of government-based resources creates a pathway to poverty. Even individuals with early-onset disabilities may struggle to get a foothold in the rural jobs market as they transition to adulthood, a time when supports are severely restricted for people with disabilities.

Social Security Disability and Medicare benefits have been my only source of living since 2012. While these programs kept me from totally falling into poverty, they are far from enough to survive on; I understand why the Institute challenges traditional poverty measures in publications like Overlooked and Undercounted. The method by which Social Security benefits are determined uses a person's lifetime earnings. While cost-of-living adjustments, or COLAs, are permitted, many times these increases do not keep pace with the ever-escalating cost of living in this country.

For example, the Social Security Administration announced a 3.2% cost-of-living increase in 2023 for 2024, which will result in an average increase from $50 to $59 per calendar month for beneficiaries. However, this does not consider the actual rate of inflation, particularly for the disabled, who have other medical expenses. This discrepancy brings a big disadvantage to those who rely on such benefits to sustain daily needs because the COLA does not often include many steep rises in the cost of needed items like medical supplies, prescription medications, or basic living expenses. Several advocates call for the use of a different index, the CPI-E, which concentrates on the spending habits of the aged to better reflect the costs they face. Even a modest increase could still be sufficient to keep up with rising costs, particularly as the increases in the cost of essential goods and services continues. Congressional approval is needed.

Poverty also increases the risk of being disabled, as chronically needy individuals are regularly at risk of health problems and injury, which may lead to disabilities. Poverty is accompanied by malnutrition, lack of access to ensure citizens' well-being, poor living conditions, and natural exposure, which may be capable of causing a health condition that results in disabilities.

It is unsurprising, then, that there is a significant difference in financial well-being across disability status and employment interruption in the US. In Indiana, there are nearly 1 million people with a disability (950,867) and 20.9% of them live below the poverty line. Clearly, there is a critical need for major changes. Addressing the inequality of Social Security benefit calculations, ensuring that COLAs reflect real costs of living, and providing additional resources for medical expenses can all help ensure that those with disabilities are not overwhelmed by financial instability. Beyond this, we must be fighting for our existing rights to be granted to us, including access to education, employment, and healthcare.

My personal story speaks to the unbearable financial burden living with a disability can create, even with the cushion of social safety nets. Bottom line: the insufficiency of Social Security benefits paired with their never-ending increase in living costs has rendered a multitude of people with disabilities battling to get by, much less thrive.

My journey is far from over, and though I still struggle, my story has been one of resilience in times of turmoil. My fight for a better quality of life is far from won, and thus I do hope for better times. I have not only been an advocate for change in marginalized communities for over 20 years now, but I am also a Policy Fellow at the Indiana Community Action Poverty Institute, ("the Institute"). At the Institute, we are committed to addressing the needs of those in privation by advocating, researching, collecting critical data, implementing and lobbying for policy change. Indiana Community Action Association and my team here at the Institute are helping me execute what I have always envisioned: being a productive advocate and citizen by helping to provide solutions to the disparities faced by marginalized communities living in poverty.

I hope you will join the Institute on September 26^th as we walk through our new report highlighting the experiences and needs of individuals who must leave the workforce due to a disabling condition. Register here!

Our Community Action Policy Fellows Program is generously funded by the Herbert Simon Family Foundation. We are incredibly grateful for their support!