Hidden Costs, Real Consequences: Unexpected Costs of Living with Disability

Hidden Costs, Real Consequences: Unexpected Costs of Living with Disability

Disability is a fact of life. Everyone becomes less “able” as they get older, needing more time or help to accomplish formerly routine tasks. Yet other disabilities are present from childhood, and this includes cerebral palsy and Erb’s palsy, both of which are caused by birth injury.

Regardless of when someone develops a disability, many people don’t realize the financial costs that accompany certain conditions. While some of these costs are out-of-pocket expenses, others can be a loss of opportunity that impacts someone economically, though the actual dollar value is less clear.

When considering these costs, things such as medications, hospitalization, and mobilization aids first come to mind. But those are only a few of the expenses people with disabilities face in day-to-day life. While there are several social programs that help disabled people and families with disabled children manage such costs, many expenses simply aren’t covered.

As a result, some people with disabilities who seem to be well off may be, in reality, struggling to make ends meet.

Direct Costs of Disability

Many disabilities such as cerebral palsy can be mild or severe. This factor has an important impact on an individual’s yearly expenses. For example, while some people with CP may not have a learning disability, others may need special education programs. In the same way, some people with CP may have a sight mobility impairment, while others need an electric wheelchair and help with activities such as grooming and eating.

This variability means that individuals with disabilities have a wide range of expenses, including prescription medications, hospital care, special educational programs, and occupational and physical therapy. Disabled people may also need accessible housing, including ramps, accessible bathrooms with walk-in showers, and kitchens with low counters for wheelchair access.

Other costs include accessibility devices such as wheelchairs, hearing aids, and reading aids. Some people may spend extra on housing so they can live in an accessible apartment, a location that is close to where they work or go to school, or 1 where they can access public transportation.

These expenses can total $1,000 to $7,000 per year. Even people with disabilities who have a well-paying job may find their finances are tight. In 2003, the Centers for Disease Control and Prevention (CDC) estimated the lifetime costs of CP at $921,000, including health care, lost productivity, education, and assistive devices.

For children with disabilities, there are direct and indirect costs to the entire family. Some directs costs, such as medical expenses, may be covered by Medicaid, health insurance, or as an out-of-pocket expense. But some costs of caring for a child with a disability can’t be measured easily. For example, 1 parent or guardian may need to stop working, or work fewer hours, reducing the family’s income. Having a disabled child can also be a stressor for the parents, affecting both their health and relationship.

In terms of long-term costs, parents must consider the best educational program for their child, and the kinds of jobs their child may be able to have as an adult. When taking this long view, some researchers suggest that doing more treatments and therapies when the child is young can be beneficial. Such interventions may help to reduce impact of the disability, though there can be a more immediate financial impact on the family.

Help for People with Disabilities

While the costs of disability are high, there are programs to help disabled adults and children pay for some expenses. One of these programs is Medicaid. While benefits vary from state to state, all state programs must pay for certain services, such as hospital care, home health services, and laboratory services. Optionally, programs may cover services such as physical, occupational, and speech therapists; personal aides, and glasses and vision care.

Medicaid also allows people with physical or mental disabilities to have access to care in their homes, or at a center in their community. This benefit allows disabled individuals to continue living independently or with family members, instead of in an institution or nursing home.

Children with disabilities may be eligible for Supplemental Security Income (SSI), and disabled adults may be able to receive Social Security Disability Insurance (SSDI). To qualify for these benefits, someone must have a physical or mental impairment that greatly affects their functioning in daily life, and they must have a limited income and/or other resources.

Yet, disabled adults who receive SSDI payments still live at or below the poverty level, and must pay for high medical costs. This economic problem points to a much larger issue: people with disabilities are twice as likely to be poor as people without disabilities in the United States. While social aid programs do much to help disabled individuals, they are inadequate to offset the social costs of disability.

Expenses That Can’t Be Measured

The social costs of being disabled may be even more important than the economic costs, because social costs affect an individual’s opportunities and earning potential. For example, 1 social cost of disability is that the environment is often not accessible. For example, those who use wheelchairs may not be able to enter buildings that only have stairs, or they may not be able to afford a power chair that would help them navigate the streets independently.

Transportation is another barrier. If disabled people cannot drive and don’t have accessible public transportation, such as a bus route near their apartment or buses with wheelchair lifts, they may not be able to participate in educational programs, or have an easy way to get to work.

While some cities have van and bus services for disabled people, they are often slow and in high demand. Transportation problems may be 1 of the reasons why. According to Cornell University’s Employment and Disability Institute, only 14.4 percent of disabled adults had a job in in 2013.

Disabled people are also discriminated against in hiring practices, often because potential employers may think they are not competent enough to handle the job. Because workplaces are required to accommodate disabled individuals under the Americans with Disabilities Act (ADA), employers may also be hesitant to hire people with disabilities due to a (misguided) fear that they will require expensive accommodations.

Given these barriers to education, training, and employment, it’s clear that we cannot truly measure the costs of disability, since many of them are in the form of lost income and limited opportunity.

Reinventing the Yardstick?

Beyond the economic costs of disability, we must confront socially “disabling” attitudes. Children with disabilities are 4 times as likely to be the victims of violence than kids without disabilities.

On the education front, the problem is multipronged. Adults with disabilities are less likely to have finished high school, whether due to lack of access, lack of encouragement, or lack of programs to fit their intellectual needs. Employers stigmatize disabled people and assume they will not be able to perform their job well.

To reduce the economic and social cost of disability, we must recognize our own stereotypes. We must realize the barriers in our society, and create an environment that is accessible to people with all body types. It is only with these kinds of structural and social changes that we will be able to create true “cost-cutting” measures.

Sokolove Law Team

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Last modified: September 28, 2020