by: Annie Carver, Esq.
“Health inequities are difference in health status or the distribution of health resources between different populations or groups arising from the social condition in which people are born, grow, live, work, and age.” There are many health inequities that are associated with disability – caused by stigma, discrimination, poverty, exclusion from education and employment, and other barriers within the healthcare system. One health inequity that is rarely named for people with disabilities is lost time, or the time cost associated with being disabled. There is a time cost associated with navigating welfare and healthcare systems, coordinating medical care, and managing personal care and symptoms. On top of that, public inaccessibility and legal barriers isolate disabled people from their greater community; therefore, disabled people often have to navigate the complicated coordination of their care without the support system that many non-disabled people enjoy. These time barriers also tend to disproportionately impact those with multiply marginalized identities, particularly people of color and queer people.
With less time in their day and less support than their non-disabled peers, people with disabilities often are left to pick and choose what they can tend to each day – whether that be scheduling or attending medical or administrative appointments, calling insurance or medical suppliers, attending to self-care – on top of the things every person must manage each day.
Navigating administrative barriers presents a major time cost for disabled people. Many administrative barriers are built into our welfare systems – social security disability insurance (SSDI), Medicaid, or SNAP (Supplemental Nutrition Assistance Program) – that make it hard for people who are otherwise eligible for these programs to access and maintain their eligibility. Such barriers include arduous paperwork requirements, means-tested programs, in-person appointments, and hard to use websites.[1]
Additionally, denial rates for welfare programs are high – approximately 63% of initial SSDI applications are denied. One of the most common reasons a SSDI application is denied is for insufficient medical documentation. Medical documentation must indicate how an applicant’s disability limits their ability to work or how long the disability is expected to last. Many medical providers do not receive training on how to best write disability documentation, and it is often left to the applicant to educate the doctor on what needs to be documented—yet another time cost for disabled individuals.
Not only do disabled people have to clear these administrative hurdles when they first apply for programs, but most disabled people will have to reaffirm their status 6-18 months after the Social Security Administration’s initial determination. Then, depending on the condition, most disabled people have to re-affirm their status every three years. The need to substantiate and prove ‘disability’ is a constant burden placed on disabled individuals.
Similar to an SSDI application, the U.S. legal system also puts the burden on disabled people to substantiate their need for workplace or school accommodations. Disabled people require proof of diagnoses and doctors’ notes demonstrating the need for accommodations in a country that does not have universal healthcare. In the U.S., people of color disproportionately do not have healthcare coverage and experience higher rates of disability.
In addition to administrative burdens, navigating and accessing the healthcare system is also a time cost for disabled people. For instance, para transit, often the only option for affordable transportation, is incredibly inefficient, with patients sometimes waiting hours for late transit, which can result in lost appointment time—one that may have taken weeks or even months to initially schedule, and may take weeks or months again to reschedule. From personal experience, navigating the healthcare system and coordinating my own care is a part-time job—and often a full-time frustration. The job description often includes calling doctors to make appointments, contacting billing departments to obtain flexible-spending account (FSA) receipts, checking in with medical suppliers to make sure supplies arrive on time, ordering prescriptions, calling insurance, as well as remaining ready to intervene when things go wrong, such as when prior authorizations expire without notice, supply orders arrive incorrectly, or calling doctors for prescription refills. The wait time for many of these phone calls can be a few minutes or a few hours. On bad weeks, I lose hours to these issues.
For office workers who have more flexibility in their days, this can sometimes be managed during work. However, non-salaried and retail/customer service/hospitality workers don’t have that flexibility. Their break and lunch times often coincide with the break times for doctors and administrative offices. The time compounded with the confusion of the healthcare system makes it harder for low-income individuals to access care or services. Unfortunately, this disproportionately affects Black and brown patients.
Disabled people also have to balance the time invested into caring for oneself. Many disabled people have symptoms that they have to manage – whether that is pain management, fatigue, or a high pulse – as well as managing every day medical procedures. I include in-home medical procedures and meeting doctor-recommended exercise and diet goals in my definition of medical management, and that usually requires two hours per day from me on a good day. On bad days, that can jump to three or four hours. On top of normal self-care, such as showering, cooking, and getting out of bed, it can be tough for disabled people to do it all.
It’s hard for most non-disabled people to work, exercise, eat well, and socialize all in a day, but for disabled people there’s an extra burden to get it all done. This is best expressed by Spoon Theory, coined by Christine Miserandino in 2003, which states that chronically ill and disabled people have a certain amount of “spoons” they can use each day to accomplish basic tasks, and they have to be economical about how they use their spoons. Sometimes, they will have many spoons in a day and will be able to get a lot done. Some days, it will be a matter of choosing between taking a shower and calling their medical provider or the social security office.
On top of these administrative and healthcare-related time costs, our country systemically isolates disabled people. Even thirty-three years after the passage of the Americans with Disabilities Act, public spaces remain largely inaccessible. Public inaccessibility makes it harder for disabled people to engage in their communities, which in turn makes it harder for them to create and sustain community relationships. Disabled people also are not allowed to have the same financial safety net as their non-disabled peers. In most states, there are savings limits for people on SSDI and Medicaid, thoughbills have been introduced to raise the asset limits. The ultimate insult, however, is that disabled people cannot marry their partners without risking their federal benefits, due to income thresholds. In one of its most famous marriage equality decisions, the Supreme Court said that there is no union “more profound than marriage, for it embodies the highest ideals of love, fidelity, devotion, sacrifice, and family.” When the Supreme Court legalized gay marriage, it said that the couples “ask for equal dignity in the eyes of the law.” Yet disabled people are often faced with the impossible choice of marrying who they love and enjoying the legal protections of marriage and the government benefits they need to survive.
For disability service providers, the time cost of disability coupled with systemic isolation of disabled people is imperative to keep in mind. It is a time cost, but one that can be mitigated through community resources and compassion- for missed appointments and imperfect implementation of recommendations- especially as providers attempt to build inclusive and equitable practices.
[1] It is worth noting that as I wrote this article, I attempted to navigate the federal government’s benefits.gov to see how easy it is to determine Medicaid eligibility and found the site hard to use and quick to deliver the news: based on the information you provided, you may not be eligible for this benefit.
Annie is a staff attorney with Project HEAL (Health, Education, Advocacy, and Law) at Kennedy Krieger Institute. She received a bachelor’s degree in Political Science and English from University of Rochester and a Juris Doctor at University of Maryland Francis King Carey School of Law. While in law school, Annie served as a Project HEAL trainee and as a student attorney at her school’s public health policy clinic. For the last five years, Annie has volunteered with Youth Rally, a summer camp for teens with serious medical conditions
