Living with a disability—or having a household member with a disability—often comes with significant additional out-of-pocket costs not covered by health insurance. For example, expenses such as adaptive equipment to make one’s home and/or vehicle accessible, personal attendant care or direct service provider, home modifications, assistive technology for communication, food for medically directed diets, and special clothing and shoes can add substantially to an individual or family’s budget and put economic stability even further out of reach. What’s more, disabled people are substantially more likely to face unexpected medical expenses that further exacerbate economic insecurity.
A growing body of research has begun to demonstrate the magnitude of these additional disability-related costs. Drawing on four nationally representative surveys, researchers from Stony Brook University, the University of Tennessee, the National Disability Institute, and the Oxford Institute of Population Aging estimate that households with a disabled adult need an average of 28 percent more income—an extra $17,690 per year for a typical U.S. household—in order to achieve the same standard of living as a comparable household without a disabled member.57 That research further suggests that America’s Official Poverty Measure and Supplemental Poverty Measure both significantly underestimate poverty and hardship among the disability community. Accounting for additional disability-related costs, the share of U.S. households with a disabled adult officially counted as poor in the United States would be ten percentage points higher than captured by official Census statistics—and 2.2 million more disabled people in the United States would be considered officially poor.58Economic Justice Is Disability Justice
People with disabilities encounter a wide range of out-of-pocket expenses. These expenses can weigh heavily on household finances and increase the risk of poverty; adults with disabilities experience greater difficulty meeting monthly expenses, saving for the future and making ends meet.
National Disability Institute, in partnership with the Stony Brook University School of Social Welfare and the University of Tennessee College of Social Work, has released “The Extra Costs of Living with a Disability in the U.S. — Resetting the Policy Table” to catalog and quantify these costs, and explain their policy implications.
Researchers estimate that households containing an adult with a work-disability require, on average, 28 percent more income (or an additional $17,690 a year for a household at the median income level) to obtain the same standard of living as a comparable household without a member with a disability.
The research proves that these extra costs exist. The question remains, what can we, as a country, do – through policy and practice – to address this inequality?The Extra Costs of Living with a Disability in the United States
Many means-tested public benefits in the U.S. impose asset and income limits, but do not take the additional costs of disability into consideration. The result is that many people with disabilities may be viewed as financially able and thus denied assistance even though the reality of their extra disability-related expenditures places them in a tenuous financial position.The Extra Costs of Living with a Disability in the U.S. — Resetting the Policy Table
The extra costs of disability fall broadly into two categories: indirect costs and direct costs.
Indirect costs include foregone earnings that people with disabilities incur because they face barriers to work, such as employment discrimination. They also include costs borne by family members who may reduce their amount of paid work, or take lower paying jobs that come with flexibility needed to provide care to a family member with a disability.
Direct costs are those expenditures people make because they have a disability. Within the disability community, these extra costs are well known. The largest extra costs are for personal assistance services and health care, where out-of-pocket costs for people with a disability are more than twice as high as those without a disability. On Twitter, individuals share their experiences about a variety of extra costs, such as the cost of ordering things when the in-person pickup option is not accessible, building a wheelchair ramp, acquiring and maintaining service animals, buying a more expensive car in order to accommodate a wheelchair, purchasing food for special diets, or paying more for housing in order to find a place that is accessible and convenient.The Extra Costs of Living with a Disability in the U.S. — Resetting the Policy Table
This approach shows that, in order for a person with a disability to have the same standard of living as someone without a disability, they would need more money.
Households containing an adult with a work-disability are estimated to require, on average, 28 percent more income (or an additional $17,690 a year for a household at the median income level) to obtain the same standard of living as a comparable household without a member with a disability.
Poverty measures, such as the FPL, assume that a household including a person with a disability can achieve the same standard of living as a household not including a person with a disability when both have the same income. This research finding, which highlights the required expenses that only people with disabilities incur, challenges that assumption.
If we were to adjust the FPL for adults with disabilities for the additional costs of disability, as shown in Figure 1, the poverty rate for households including an adult with a work-disability would rise from 24 percent to 35 percent. With the population of adults with work-disabilities estimated at 20 million13 this would result in an estimated 2.2 million more people with disabilities counted as poor. This adjustment would also increase eligibility for the major health and social welfare programs, including SNAP, Medicaid, and access to the health insurance subsidy.The Extra Costs of Living with a Disability in the U.S. — Resetting the Policy Table
For Cokley, the financial cost of being disabled comes from navigating a world designed for able or normative bodies. “Little people pay twice as much for a wardrobe because you’re having to pay for alterations. If the airline breaks your wheelchair or loses your cushion, you will likely need to offset that cost on your own while you fight to get reimbursed, or you aren’t able to go to work.” What seem to be insignificant costs add up for disabled people, which can affect not only their wallets but their careers as well.
“What people should know and what I had to learn myself is the hidden extra cost of living with a disability is an enormous stress that cripples our community and our families’ lives more than the initial diagnosis,” says Murray, echoing a sentiment expressed by many disability rights advocates. While a diagnosis is difficult to live with, unexpected expenses and an inaccessible society compound the issues associated with disability.The Cost of Being Disabled – Design*Sponge