ADDRESSING SOCIAL DETERMINANTS OF HEALTH FOR PEOPLE WITH DISABILITIES

Monika Mitra said people with a disability are disadvantaged for almost every indicator of health, whether for physical, oral, or mental health; for risky health behaviors such as smoking and substance use; for chronic health conditions; or for premature mortality. She noted that people with a disability who also identify as LGBTQ+ are even more likely to report poor physical and mental health, as are people with an intellectual or developmental disability or whose disability affects their mobility and who have minoritized racial and ethnic identities (Mitra et al., 2022).

Much of Mitra’s research has focused on pregnancy, perinatal health, and reproductive health, and her studies have found that pregnant women with disabilities are at a significant disadvantage regarding pregnancy complications, access to prenatal care, adverse outcomes, postpartum health, and perinatal mental health. For example, pregnant women with intellectual and developmental disabilities have a 75 percent higher risk for severe maternal morbidity and a 186 percent higher risk for maternal mortality compared to peers without an intellectual or developmental disability (Mitra et al., 2021). Women who are deaf or hard of hearing have an 80 percent higher risk for severe maternal morbidity (Mitra et al., 2024).

Mitra said the intersection between disability and health is rarely part of policy or programmatic discussions, which she believes stems from the expectations that people with disabilities will have poor health because of their disabilities. In reality, she said, health disparities and health inequities resulting from social determinants of health cause the poor health people with disabilities experience (see Box 3-1). Social determinants of health refer to the conditions in which people are born, grow, live, work, and age, as well as the wider set of forces and systems shaping the conditions of daily life. These social determinants include factors such as socioeconomic status, education, neighborhood and physical environment, employment, social support networks, access to health care, and access to resources such as food and transportation.

BOX 3-1

Health Disparity, Health Care Disparity, Health Inequality, and Health Inequity.

In particular, said Mitra, some social determinants of health have unique effects on the health, well-being, and quality of life of people with disabilities, including:

• restricted environmental access,
• the pejorative and stigmatizing attitudes of health care providers,
• the administrative burden associated with complex procedures and policies that disabled people often experience when interacting with the social systems around them,
• the lack of social supports and systems, and
• the lack of home supports and community-based supports that would enable people with disabilities to live in the community rather than in institutional settings.

Mitra noted the vast differences in educational attainment, particularly for postsecondary education, between people with and without a disability. Only 2 percent of students with intellectual disabilities receive any college education because of low expectations and a lack of emphasis and inclusion of people with intellectual disabilities in higher education. People with any disability are less likely to work compared to people with no disability, and people with a cognitive disability are the least likely to work (Winsor et al., 2023). The poverty rate among people with a disability is more than twice that of those without a disability.

Mitra explained that people with disabilities pay a “disability tax,” the extra financial burdens that individuals with disabilities often face because of the additional costs associated with their condition, including expenses for specialized medical care, assistive devices, modifications to living spaces or vehicles for accessibility, transportation, personal care assistance, and other accommodations necessary for daily living. When accounting for this disability tax, the rate of disabled people living in poverty is approximately 35 percent. On average, she added, a household with a member with a disability requires 29 percent more income to obtain a comparable standard of living to a household without disabled members (Morris et al. 2021).

Given their lower employment rates and higher rates of poverty, individuals with a disability have significantly higher rates of food insecurity and housing insecurity (Coleman-Jensen, 2020; Meschede et al., 2023). The affordable housing crisis, said Mitra, has a significant effect on people with disabilities who need accessible housing so they can live in the community. Supplemental Security Income (SSI), for example, does not cover the average rent for a studio or one-bedroom apartment in any housing market across the United States (TAC, 2014). On average, households with members with any type of disability live in poorer quality housing and neighborhoods.

Transportation is another social determinant of health that people with disabilities deal with regularly. Transportation barriers can present significant challenges for individuals with disabilities, limiting their ability to access essential services, employment opportunities, social activities, and health care. In many parts of the country, accessible public transportation and paratransit services are limited or unavailable. People with blindness or low vision, psychiatric disabilities, chronic health conditions, or multiple disabilities experience more problems using public transportation, Mitra added (Bezyak et al., 2020). Regarding social networks and social isolation, Mitra said data from her team show that people with a disability who identify as belonging to a sexual orientation or gender identity minority are at a great disadvantage.

One contributor to the health inequities individuals with disabilities experience is the attitude of physicians and other health care professionals regarding individuals with disabilities. Studies have found that physicians feel uncomfortable, untrained, and unprepared to work with individuals with disabilities. According to Mitra, 81 percent of medical students and 75 percent of residents have no clinical training in disability care (Holder et al., 2009). One study from her group found that 44 percent of obstetrics/gynecology clinics in four cities reported being unable to provide care for people with mobility disabilities (Mitra et al., 2016). When questioned about the quality of life of people with disabilities, 82.4 percent of clinicians said they expected quality of life to be “a little” or “a lot” worse. In the same survey, only 56.5 percent of clinicians strongly agreed with the statement, “I welcome patients with a disability into my practice,” and only 40.7 percent were “very confident” they could provide the same quality of care to patients with or without a disability (Iezzoni et al., 2021).

Mitra said health disparities and inequities cannot be treated in a vacuum of health care. She noted that in 2023, the National Institutes of Health designated people with disabilities as a population with health disparities (NIH, 2023). She hopes this announcement will lead to a larger body of work aimed at documenting and understanding the disparities and the upstream and downstream factors evidence-based programs need to address to support individuals with disabilities.

PERSPECTIVE OF A COMMUNITY OUTREACH COORDINATOR

To provide some context for her remarks, Joy Amaryllis Johnson said she has a grandson with a neurodevelopmental disability who has had his disability application denied because his mother makes too much money as an ultrasound technician. She also has a daughter who lost part of her leg in a work accident and whose disability application has been denied six times. Johnson, who characterized herself as being morbidly obese, has found physicians to be disrespectful and dismissive when she tries to find solutions to her obesity. Johnson said, in her role as a community outreach coordinator, she takes on a great deal of trauma while trying to assist individuals in her community who have a disability. She noted, too, that the medical record for individuals with disabilities is often incomplete because of the limited time clinicians have to spend with their patients.

Johnson, who works on public housing and welcoming people into the community, said too many developers think only about their bottom line and not about how to make their buildings compliant with requirements in the Americans with Disabilities Act (ADA). “Nobody is holding developers or agencies accountable for this,” said Johnson. “Every unit we build should be ADA compliant.”

REIMAGINING EHRs TO INCLUDE THE SOCIAL SIDE OF HEALTH

“Understanding and addressing the social determinants [of health] is paramount for effectively addressing mental health. Full stop,” said Benjamin F. Miller at the start of his presentation. Research, he said, consistently shows this interplay between social factors—socioeconomic status, access to education, employment, and others—and mental health. These determinants not only influence an individual’s susceptibility to mental health disorders, but also affect access to treatment, recovery, outcomes, and well-being. “By recognizing and addressing these connections and seeing them as a core component of what we do in practice, we actually are able to better address issues like mental health and society as a whole,” said Miller.

The era of electronic health records (EHRs) began on a note of optimism, but the way EHRs have affected systems and workflows differs significantly from the original intent of the EHR, he said. The vision for EHRs was that they would enhance communication and improve recordkeeping; based on recent data, it is still unclear whether EHRs deliver any efficiencies. “What we know is our system has become skewed towards clicks or data entry that represents a complete task within EHRs,” said Miller, a trend he blamed for the relationship between EHR use and physician burnout. Studies have shown, for example, that providers who spend more than six hours a week outside of normal clinic hours completing EHRs were nearly three times more likely to report burnout overall and almost four times more likely to say that EHRs themselves were the major cause of their burnout (Robertson et al., 2017).

EHRs, said Miller, are not providing the information clinicians feel is pertinent for delivering appropriate care to their patients. “In 2024, it really feels time to refocus our EHRs to serve not just as documentation tools but as instruments for a more comprehensive and community orientation approach to well-being,” said Miller. Individuals in certain communities, he noted, bear a disproportionate burden of population health psychiatric morbidity. “Given that poor mental health can significantly hinder life expectancy and the quality of it, it underscores the importance of prioritizing population mental health that includes addressing social determinants,” said Miller.

When researchers ask people what matters most to them and their health, the answers are invariably having a place to live; having a job and enough resources to provide for their family; having food on the table; and having a sense of purpose, connection, and belonging. These conditions, said Miller, are vital conditions, yet EHRs track few if any of these conditions, even when clinicians ask about them. Specific to mental health, these vital conditions represent some of the most modifiable intervention targets, but the complexity of the U.S. health care system makes it difficult to reformulate how to tackle massive issues such as the social determinants of health and mental health.

The mental health field, unlike other branches of health care, has done less to embrace preventive approaches and has less grounding in prevention than other areas of medicine, said Miller. “For mental health, most of our resources have been devoted to secondary and tertiary treatment of existing mental health disorders versus actually preventing them in the first place,” he said. “The inability of the mental health field to work upstream and prevent poor mental health hinders progress in reducing the incidence, prevalence, and burden of mental health disorders.”

Miller discussed several key challenges around workflow, technology, incentives, and privacy that need addressing to collect and use data on the social determinants of health in clinical settings. He acknowledged that getting people to change the way they do things is difficult, as anyone who has engaged in health care transformation has experienced. Getting clinicians to change their practices requires support and technical assistance. Regarding data on the social determinants, it is important to make the data relevant to providers and to incorporate data collection into workflows in a manner that does not disrupt their day. Otherwise, said Miller, clinicians will see this as yet another unfunded mandate handed down from administration.

Regarding data, Miller said it is important to develop and implement standardized data fields in EHRs for collecting social determinants data, which would allow for consistency and easier analysis and sharing across health systems. Efforts to extract data on mental health from EHRs have fared poorly because those data are not consistently structured across multiple EHRs. He does not want to see this happen for the social determinants.

Getting clinicians to collect data on social determinants will require payment systems to change their payment policies. In the current health care payment systems, clinicians get paid for procedures performed, not for time spent collecting social determinants data. Today, there are not enough incentives to move the needle on data collection, though holding systems accountable for either collecting those data or using them in a meaningful way would lead to progress. Miller noted there are technology tools for bringing social determinants into EHRs. One place to start, he said, is to use natural language processing tools to automatically extract social determinants data from clinical notes. This would reduce the burden on clinicians and ensure data are captured and studied in a meaningful way.

Miller said the most expensive mental health services are those used the least (Figure 3-1). However, he added, “We do little to put resources into the bottom of the pyramid.” As an example, he recounted a study he and his colleagues conducted that looked at how much California spent on health care versus social programs. “What we found is likely the case throughout all states, with this disturbing paradox where increased state spending on medical treatment may actually contribute to worse health conditions because of ignoring the investment on the social side of health,” said Miller. Limited budgets and siloed funding are significant barriers to changing the ratio of spending on health care versus social determinants of health.

FIGURE 3-1

The inverse relationship between the most used behavioral health services and cost. SOURCES: Miller presentation, April 4, 2024. Modified from World Health Organization (WHO). 2009. CC-BY-NC-SA 3.0.

What matters most going forward, said Miller, is the need to be intentional about investments and policies that promote social determinants as being foundations for health. Because the public is more aware today of how social factors affect their health, this may be the moment to act and enable EHRs to collect these data.

Miller shared a cautionary tale related to integrating mental health into primary care. Numerous studies show the benefits of bringing mental health clinicians into primary care (Gallo and Barlow, 2012; O’Loughlin et al., 2019; Rowan et al., 2021), yet adoption has been slow, at least in part because the incentives have been too low and too easy to achieve and because too many clinicians are not aware of the value of doing so. Miller said:

If we are serious about bringing social determinants into health care and incorporating them into EHRs, we have to make it matter for those on the frontline. Make it easy for them. Help them to see the value and then wrap that up through meaningful support.

Incorporating social determinants into EHRs, said Miller, will provide a more complete picture of patient health and enable health care providers to better address mental health and the root causes of health disparities. “Taking a more comprehensive approach to health really allows a more intentional and meaningful way to achieve positive outcomes for all populations,” he said in closing.

AN INTEGRATED AND PATIENT-CENTERED CARE MODEL

Jennifer Hudson explained that her health center’s network serves as a convener to bring together social services partners and assist with bringing together resources to support healthy eating, active living, transportation, mental well-being, and social connections in the community. She noted that rural Williamson, West Virginia, where she works, is among the most impoverished communities in the United States. It is also an area with some of the highest rates in the country of chronic diseases, such as diabetes and heart disease. Adults with disabilities in West Virginia experience health disparities; are more likely to have depression, obesity, diabetes, and heart disease; and are more likely to smoke. Nearly 36 percent of adults in West Virginia have a disability. She added that while good things are happening in this community, the publicly available data do not reflect that yet.

In 2024, a new rule from the Centers for Medicare & Medicaid Services (CMS) uses new payment models to encourage health care organizations to perform more services aimed at addressing social determinants of health. This rule by CMS only affects patients who have Medicare, but it paves the way for change with other insurance payers who may also introduce billing codes that cover these types of services in the future. Hudson believes the new rule is promising, but clinicians need training and technical assistance to enter social determinants into their EHRs. When pulling meaningful information from the EHR, developing a structured report is expensive, as is buying a new platform that sits on top of the medical record to extract information from the data.

Q&A WITH THE PANELISTS

Ruqaiijah Yearby began the discussion by noting how difficult it has been to get clinicians to include data on the social determinants in the EHR. It may be necessary, she said, to expand the process to include statements from individuals and community health workers to consider how the social determinants of health can affect that process.

Yearby asked Johnson to talk about how housing, equity, and access to health care are connected. Housing is a human right, replied Johnson, and without housing an individual’s health probably will not be the best. She noted that most of her organization’s clients have chronic disabilities, and their need is for an efficiency apartment, not a two-bedroom unit. However, developers are not building efficiencies. She advocates for these disabled individuals when meeting with funders, developers, and the Charlottesville Redevelopment and Housing Authority and reminds them of the need to comply with the rules of the Americans with Disabilities Act.

Michael V. Stanton, a licensed clinical health psychologist and associate professor of public health at California State University, East Bay, asked the panelists to discuss how mental health challenges can create difficulties for people to receive benefits. Johnson replied there are statutes and policies that contribute to this problem and that need to change. Miller said another contributor is that people with a mental illness are seen as a relatively homogenous population defined by their diagnosis. However, some individuals with a mental health issue are highly functional and have no impairment in their daily lives, while others with a mild or moderate diagnosis are severely impaired. They are also frequently codified into one population, which makes treating each individual effectively more difficult. This dichotomous view—one either does or does not have a mental illness—hinders taking a more all-encompassing view of how mental health is foundational to health and an individual’s ability to address social determinants and improve their mental health.

A second issue, said Miller, is that the nation has reinforced faulty structures that lead to the idea that mental health is separate from physical health. Today, however, mental health has garnered public attention, making it an ideal time to create new structures that bring care to where people are and break down the silos that separate mental and physical health. “That, to me, is the future and the only way we are going to make meaningful progress in this space,” said Miller.