The Disability Squeeze Matters and is a Barrier to Achieving Genuine Autonomy

One of the more overlooked aspects of living or caring for a person with a disability is the multitude of extra costs for things like caregiving attendants, vehicle and home modifications, or additional transportation or health-related expenses. 

This disability squeeze places limits on what other necessities, like food or rent, that people with disabilities can afford, and also means that many people with disabilities must simply go without things they need because they can’t afford them.

As part of a multidisciplinary research team studying disability-related costs, we recently surveyed a nationally representative sample of adults with disabilities across the U.S. about their disability-related expenditures. On average, people with disabilities reported spending nearly 20% of all their household income on disability-related needs. And, perhaps even more troubling, nearly ⅔ reported that they could not afford the things they needed for their disability.  

The implications of living in a society where having a disability can literally bankrupt you are devastating. It means people struggling to get to work, to maintain their health, and to make ends meet. 

But I want to make an additional claim: The disability squeeze is a major barrier for the realization of autonomy. As stated in a United Nations report, progress on the Sustainable Development Goals requires that the “necessary conditions are developed to enable older persons to lead self-determined, healthy and productive lives, and empower them to exercise their right to make decisions and choices in all areas that affect their lives.”

But what are the necessary conditions for self-determination? If someone can only afford one Medicaid-funded care option, or must spend a large portion of their income just to get to work, their choices are dictated by financial constraints rather than personal preference. The disability squeeze undermines autonomy because it means you can’t afford what you need to exercise real control over your life.