5Health Disparities and the Disability Application Process

USING DATA TO ADVANCE HEALTH EQUITY FOR PEOPLE WITH DISABILITIES

Bonnielin Swenor said people with disabilities face many health inequities that are largely unaddressed (Figure 5-1) (Krahn et al., 2015). In addition to health inequities, people with disabilities face inequities in the social determinants of health (Figure 5-2), with intersectionalities between race, ethnicity, and disability (Figure 5-3) (Varadaraj et al., 2021). For example, people with disabilities who are Hispanic and Black face the highest percentage of inequities across the social determinants of health.

FIGURE 5-1

People with disabilities face health disparities. SOURCES: Swenor presentation, April 4, 2024. Data from Krahn et al., 2015.

FIGURE 5-2

Disability inequities. NOTE: BRFSS = Behavioral Risk Factors Surveillance System. SOURCES: Swenor presentation, April 4, 2024. Data from Varadaraj et al., 2021. JAMA Network Open. CC-BY-NC-ND.

FIGURE 5-3

Intersectional disability inequities. SOURCES: Swenor presentation, April 4, 2024. Data from Varadaraj et al., 2021. JAMA Network Open. CC-BY-NC-ND.

Ableism and inaccessibility are the root causes of health inequities for people with disabilities, and addressing those inequities requires tackling both root causes simultaneously, said Swenor. Ableism, she said, is a true threat to health equity for everyone in society. One definition of ableism says that ableism is rooted in the assumption that nondisabled people are the ideal (Morris and Alcantara, 2023). “That is what we are taught by society, in schools of public health, schools of medicine, and schools of nursing,” said Swenor. “We need to challenge that idea.” One study found, for example, that 82 percent of physicians believe that people with significant disabilities have worse quality of life than nondisabled people, and only 40 percent of physicians are confident about their ability to provide the same quality of care to patients with disabilities, a figure Swenor found concerning given that people with disabilities are the largest minoritized group in the United States. In addition, only 56.5 percent of physicians strongly agreed that they welcomed patients with a disability into their practice, which is discriminatory, said Swenor (Iezzoni et al., 2021).

Aside from ableism as a driver of health inequities, ableism also creates challenges with accessibility that act as barriers to information, interactions, services, programs, facilities, and environments, said Swenor. Access, she added, must be equivalent to ease of use. For her, with a visual disability, tasks can take five times as long to complete as someone without a disability, and that is not true access. “The goal post should not be ‘Can I do it, yes or no.’ We have to think about what is often called the disability tax, the extra time it must take me to do the thing I am trying to do,” she said.

Swenor referred to Tara Lagu’s comment that some doctors admit they do not want patients with disabilities and added that some office doctors whose office scales could not accommodate wheelchairs told their patients to go to a supermarket, grain elevator, cattle processing plant, or zoo to be weighed. “This is an example of both a lack of accessibility and ableism,” said Swenor.

Disability data, she said, is a key component for changing the paradigm on health equity for people with disabilities, but there are not enough good data that reflect the disability community in the ways it wants to be reflected. Who counts depends on who is counted, she said, and unlike race, ethnicity, gender, and age, disability data are not collected routinely as part of demographic information (Reed et al., 2020). “We need to work with communities on how to improve the ways in which we collect disability data, but we must collect it,” said Swenor. “Without the data, we have no opportunities to address and identify the inequities we are facing.”

However, a proposed change to how the Census Bureau would collect disability data in the American Community Survey could undercount the number of disabled Americans by 20 million people. This proposed change, said Swenor, was made without engaging the disability community, and it underscores the mistaken idea that disability is a health outcome and not a demographic. It also highlights the problem of not having a precise definition of disability, which Gloria Thornton noted earlier in her remarks. Without a precise definition, it is difficult to collect data in a standardized manner and enable looking across datasets.

Regarding what health equity has to do with the disability determination process, Swenor said health equity is influenced by the interconnections between individual factors, communities and relationships, systems of power, and accessibility (Peterson et al., 2021). Individual factors include educational opportunity and the disability tax and how they affect the disability determination process. Relationship factors include provider bias, and systems of power include medical records requirements and inequities in disability data. Inaccessible forms and transit barriers are accessibility factors.

A PATIENT’S STORY

D’Sena’ Warren grew up having episodic migraines from the time she was in primary school and into college, which is when she had her two boys who are now ages 14 and 10. While in college, she had a devastating car accident and incurred a traumatic brain injury that caused her to go from having 10 or fewer migraine attacks per month to 1 every day. The first neurologist she saw in 2010 told her the migraines would go away and she should take an over-the-counter medication once she started experiencing an attack. Though she recovered from the accident and graduated college, she lost her job because she was deemed too big of a risk.

In 2013, Warren began having seizures while she was pregnant with her youngest son, and the intensity of the head pain increased. Her neurologist told her this was typical with migraine patients and having a migraine daily was all in her head. One of her neurologists even commented in Warren’s EHR that her mother was angry because the neurologist could not help her daughter. Warren’s mother was not angry; she was advocating for her. However, the neurologist saw her as an angry Black woman. Warren, as for many chronic migraine sufferers, was told to drink more water or exercise more.

In 2018, Warren decided to apply for disability because of the daily seizures she was experiencing on top of the migraine attacks. When she first applied, she did it herself. As someone with a bachelor’s degree and a master’s degree in rehabilitation science, she felt capable of doing so, but some words on the forms were unintelligible to her. She also only included her seizure condition, believing that was the most relevant disability. After being denied, she decided to apply again, only this time she sought help from a friend in medical school to help her with the language difficulties.

Once approved, Warren grew concerned that she would only receive disability payments if she had less than $2,000 in her accounts. As a single mother of two, that was a severe financial constraint, and when she finally decided to return to work with her service dog, she feared losing her benefits if she worked too much and that she would have to go through the application process again if working full-time turned out to be unfeasible.

What helped Warren the most was finding doctors who believed in her and advocated for her, and she found peace of mind by returning to work in 2020 and being around people. “It is very isolating when you are a disabled individual,” she said. She started a support group during the COVID-19 pandemic, which she still attends, and she found her community online by creating an Instagram account for her service dog. Today, she enjoys advocating for the Black, Indigenous, and People of Color communities and attending Headache on the Hill, as well as being a speaker for the U.S. Pain Foundation during the pandemic.

PEOPLE WHO ARE UNHOUSED WITH DIAGNOSES OF MENTAL ILLNESS

Yvonne M. Perret explained that the program she helped start in Baltimore to serve people who are unhoused and have mental health problems has had a 96 percent approval rate for initial applications for disability determination. This success stems from the outreach and intensive engagement with unhoused individuals that includes conducting clinical evaluations on the street. Perret said she collects and reviews medical records so she can identify gaps that need additional information, after which she writes a comprehensive, historical medical and functional report. Although she is a licensed clinical social worker whose license allows her to diagnose physical and mental health issues, SSA does not recognize her as a clinician, so she must have her reports cosigned by a physician, nurse practitioner, or physician assistant. Perret agreed with Warren that SSA’s disability application needs to be translated into regular language.

The rural area where Perret lives has limited public transportation, and the nearest provider is 26 miles away. The next county over to hers has no public transportation or cab service, and there is one SSA office serving both counties. “The geography affects the entire ability to deal with the disability determination process,” said Perret.

The people she serves who are unhoused and have a mental health diagnosis are desperately poor, said Perret, and their education is often substandard. Recently, for example, she served a 19-year-old with autism, depression, and other undiagnosed conditions who grew up in an abusive home. He graduated from a technical school, where he learned culinary services, and the only weakness noted on his special education report was his inability to follow a recipe. The school graduated him nonetheless and let him go even though he should have been eligible for special education services until he was 21. Instead, he was homeless. Perret and her team got him Supplemental Security Income (SSI), and he is now housed, even though SSI benefits fall below the federal poverty level of $15,000 a year. “When are we going to say it is not okay to keep people with disabilities in poverty?” asked Perret.

SSA and Maryland’s Disability Determination Services (DDS) communicate by mail and phone calls—they do not text or email—but the government-provided phones her patients have run out of minutes midmonth. This creates challenges because her unhoused clients have no residence at which to receive mail. None of her clients have laptops with Wi-Fi access, and many do not have the skills to use the Social Security website even if they had Internet access. “Social Security pushes technology, and I understand that, but there is a whole population of people served by this agency for whom it does not work,” said Perret. “They need to talk to a human being, and they need to talk to the same human being, which does not happen [because] Social Security does not give out the phone extensions of their claim specialists.”

Another issue facing her clients because of their living situation is that they have histories of being subjected to personal violence. Research, said Perret, shows that 74 to 87 percent of long-term unhoused people have experienced violence against them (Roy et al., 2014). In addition, resources in the rural area she works in are limited, with one inadequate hospital in the area. The physical and mental health providers in her area lack cultural and racial heterogeneity, so there are no cultural matches for her clients. Mental health providers are quick to discharge people, and it can take as long as four weeks to get an appointment with a clinician who can prescribe medication.

Health care providers do not account for their patients’ living situation, said Perret. “We expect people to keep those appointments, fill that prescription, take those meds, and keep doing so,” said Perret. “It does not matter whether you have no childcare, whether you have no transportation, or whether you have no emotional support.” In her rural community, she is the only provider who does outreach, and the state’s case management program requires people to come to the office for their appointments. Though homelessness looks different in rural areas compared to urban areas, Maryland’s DDS provides no training about rural versus urban differences.

Perret said the disability determination process does not account for the effect of life experiences, nor does it consider homelessness to be an indicator of functional impairment. It does not understand the effects of childhood trauma and its link to substance use. “Policy in our country does not like people who use drugs and alcohol, and that plays out in this process,” said Perret. “That is not Social Security’s fault. That is Congress’s fault.” Maryland DDS does not request an adverse childhood experience score when considering disability, and trauma is not part of the training the disability claim processors receive. The timelines for applying for a disability determination are arbitrary, and her clients who get their mail via general delivery cannot meet 10-day deadlines. In her view, these functional challenges should be considered with the same weight as medical evidence, and often they are not.

Medical records, said Perret, are not designed to meet Maryland DDS’s requirements to make a disability determination because there is rarely any functional information in EHRs. EHRs are designed to understand symptoms, make a diagnosis, and prescribe treatment, but rarely do they contain information about how a broken leg, for example, affects an individual’s day-to-day life and their ability to function.

The functional areas under Social Security for people with mental health problems include something called “adapt and manage,” but Perret, who has been doing her job for 30 years, has no idea what adapt and manage means. She noted the application forms include a host of yes–no questions but not enough space to describe the variability of day-to-day life for people with mental illness.

Perret said she is grateful to have the opportunity to discuss this subject, and that for many people, Social Security benefits are the only game in town, since many states no longer have public assistance programs for people with disabilities. In Maryland, one of the wealthiest states, public assistance for individuals with disabilities is about $300 a month. Moreover, many communities treat unhoused people as criminals, which appalls her.

The suggestions Perret offered to improve this situation included:

• Training SSA and DDS staff on homelessness, trauma, poverty, cognitive impairments from trauma, and mental illness.
• Establishing time frames that account for one’s living situation.
• Implementing a culture of service instead of one focusing on fraud.
• For new staff, ensuring that an experienced staff person reviews all decisions by new staff members.
• For SSA and DDS, adding text and email to the list of communication modes they use.
• For SSA and DDS, partnering with community providers who serve this population.
• Having consultative examination providers note the time they begin and end their sessions as part of their reports.
• Using treating sources for consultative examinations and giving extra weight to their information.
• Ensuring that DDS considers drug and alcohol use per requirements and reviews every claim at the DDS that includes those allegations.

Currently, someone with a substance or alcohol use disorder is denied disability coverage.

Perret said the desperation of claimants is profound, with SSA benefits being the only lifeline for many. People’s experiences and their effects are ongoing and require understanding in determining disability. “It is beyond time for us to say in policy and practice that not having a home in the United States is unacceptable and that having housing is a right,” said Perret. Funding an array of mental health services in every community is necessary and must happen, especially for children. She noted that the disregard about the lack of affordable housing is at a crisis level, and said service, not judgment, must be the culture of SSA and DDS.

Q&A WITH THE PANELISTS

Amanda Alise Price opened the discussion by asking Swenor how disability health inequities could be better considered in the disability determination process. Swenor replied that these inequities are baked into every step of the process yet are profoundly underaddressed and underacknowledged. Revising the disability process will require working closely with the disability community and even putting people from the community in charge of changing the process. She commented that these inequities exist because the system views people claiming to have a disability as frauds and fakers. “That is the basis of the process,” said Swenor.

Vincent Nibali noted that SSA’s definition of disability is based on a person’s ability to work, and he asked the panelists for their advice on how to collect information on other aspects that affect a person, such as homelessness, being a single parent, or living in a rural area, and account for that information in the disability determination process. “We do not want to add more steps, but how do we get that information if we do not put out another form?” Nibali asked.

Perret replied that homelessness is indicative of functional difficulty, and being homeless is flagged by the field office to give a claim priority at DDS. Including a simple question such as “Do you have a place to live?” or “How long have you not had a place to live?” would provide that information. The Directory of Occupational Titles also needs to be updated to reflect local and regional economies. “My folks cannot move from Maryland to Alaska to be fishermen,” said Perret. She also recommended that SSA should use text messaging and stop standing out as a monolith and instead be part of the community. She also called for SSA’s internal culture to become one of service. Swenor added that she recognizes that as a benefit program, there are decisions to be made, but having to prove without a shadow of a doubt someone is meeting some threshold of disability is antiquated and a burden.

Joy Amaryllis Johnson remarked that many people she works with try to apply for disability on their own or with a social worker, but the minute they get an attorney that does Social Security benefits, they get approved. What this leads to is distrust in the system and the belief that the process is rigged to favor lawyers. Perret added that people get approved at hearings because it is the first time the person making a determination gets to see the individual.

Joanne Oport, from Africans for Mental Health, said it is frustrating to know that individuals living with mental illness who seek Social Security disability benefits must get legal assistance after receiving a denial. She also noted that the policies and eligibility criteria are not realistic considering the lived experiences of those with a mental illness that varies in severity over time.

Perret suggested training the people who make disability determinations to let the claimant know exactly what information is missing and how to fill in the gaps. Swenor noted that as a data scientist, she sees this boiling down to inequities and bias in health care records and the way they are being interpreted. Lagu added that doctors also need training to understand SSA language and how to help their patients provide the required information. To her, it is shameful that there is a sub-industry of lawyers making huge amounts of money off the process, to which Perret responded that what people need help with is filling in clinical gaps, which requires help from a doctor, not a lawyer. Warren suggested that SSA establish a 24-hour call line to assist claimants, particularly with wording or verbiage that is unclear.