In the final session of the first day of the workshop, Michael V. Stanton, planning committee member, licensed clinical health psychologist, and associate professor of public health at California State University, East Bay, moderated a discussion among some of the speakers from previous panel sessions. The goal was to brainstorm possible approaches to mitigate the effects of the health inequities discussed in those earlier sessions on the disability determination process. The panelists for this session were Marshall H. Chin, Bonnielin Swenor, Monika Mitra, D’Sena’ Warren, and Yvonne M. Perret.
Stanton opened the discussion by asking if there is anything that can be done to simultaneously address disability and health inequities, and improve the disability designation process. One step the Social Security Administration (SSA) should take, said Mitra, is to hire people who have lived experience with disability and who have worked to support people with disabilities. She also suggested improving data systems to better understand intersectionalities and the interconnectedness of the social determinants of health and disability. In addition to better data, Perret suggested increasing research to generate practice-based evidence.
Perret also thought forming a work collaborative comprising members representing different aspects of the social determinants, such as transportation and housing, health practitioners, and individuals with lived experience, could develop ideas that would improve outcomes and provide better support for people with disabilities without bringing about a massive shift in these systems. Such a collaborative could lead to efforts that operate outside of the current silos that have created the current disjointed system that causes difficulties for people living with disabilities.
Chin remarked that there cannot be a good disability determination process without equity and that it is dangerous, in some ways, to marginalize equity issues as something separate as opposed to being integral to everything SSA does in the disability determination process. Having said that, he offered three points regarding solutions. First, the goal of the determination process should not be to minimize fraud but to provide a fair and just opportunity for people with disabilities to enjoy good health. Taking that perspective would enable identifying the key checkpoints in the process and determine, for example, if the data or standards for defining disability are biased and if the process reflects the perspectives of those who have lived experience with disability. Second, there are no shortcuts to achieving equity. There are technical issues to address—are the data biased, for example—and culture change that needs to occur so that advocacy and health care organizations and SSA buy into the idea of a fair and just opportunity for health. At the same time, the business case must align with culture change.
Swenor commented that pursuing health equity is a never-ending journey. SSA is part of that journey and needs to be accountable, but there also should be accountability structures for the many communities that serve people with disabilities. She said there needs to be a growth mindset that accepts that things will not be perfect all the time, and the important point is to keep working to improve the system and to remember that people with lived experience are the real experts who need to be involved when improving the system. Mitra added that the end goal is not that SSA is providing benefits to those who need them. The end goal is to improve the quality of life and well-being of people with disabilities.
HELPING CLINICIANS HELP THEIR PATIENTS
Stanton asked the panelists for their ideas on how to guide clinicians to work within the system to move along that journey to health equity. One thing to do, replied Perret, is to tell clinicians, particularly prescribing clinicians, that by providing information, they are not deciding disability. “Part of the reluctance of the medical providers to provide information is they say ‘I do not want to be the one saying whether or not [the person is disabled],’” she explained, adding that medical training should send the message that providing this information is part of health care, not outside of it. Mitra added that it is crucial for medical education to include disability training and how social determinants interact with disability to affect their patients’ health.
Chin noted that clinicians are just one part of a larger ecosystem that includes SSA, providers, the health care system, community advocates, and others. Siloing the problem—just training clinicians, for example—will not solve the problem if the clinicians are working in a system that does not give them time to do a good assessment of a patient. He suggested taking an implementation science view of looking at the problem as a whole, not as individual, unconnected pieces. Perret said politicians are also part of the ecosystem, because if they are not on board with funding Social Security benefits for people with disabilities and solid clinical assessments, the focus will continue to be on withholding benefits and withholding care.
Warren commented that clinicians need to understand that every person with a disability experiences pain differently and that many people are good at masking their pain. She also called for increasing disability payments and the limit on savings that a person can have to receive financial support, an idea Perret said she supports.
ISSUES WITH THE EHR
Warren also noted that some clinicians gaslight their patients and color the electronic health records (EHRs) in a way that minimizes how a disability affects the individual. Perret added that when making a disability determination, everything the claimant says is an allegation and not evidence, as opposed to what is in the individual’s medical record. For example, if a person with a disability tells their doctor they are in pain, but they are smiling and moving well, the doctor may record what they see as opposed to what the patient reports. Addressing this type of bias that tarnishes a medical record is challenging, said Amanda Price.
Perret said a problem she has seen with EHRs that is detrimental for people with mental health challenges is they now have a checklist of symptoms without elaboration, which does not do justice to an individual’s experience. Stanton agreed, adding that research shows that the same symptoms in two patient populations of different ethnicities will get different diagnoses (Coleman et al., 2016; Schwartz and Blankenship, 2014; Vanderminden and Esala, 2018). “There definitely is an element of subjectivity on the provider end that probably colors the medical record,” said Stanton.
Amy J. Houtrow then asked if the specialists who perform consultative examinations on behalf of people going through the disability determination process are biased in ways similar to other health professions. Chin said the weakness of the current system is that it relies on a review that it is subjective and not transparent. More delineated definitions of the criteria used in these reviews would make the process more transparent. Another approach would be to have a panel of medical experts and people with lived experience making these determinations.
Carolyn Petersen, from the Mayo Clinic, pointed out that there are people who have lived experience with disability who also have lived experience designing, developing, and using EHRs. Perhaps those individuals should be involved in efforts to improve the ability of EHRs to capture more useful information on disability.
INCORPORATING PATIENT VOICES IN RESEARCH
Jonathan Platt asked the panelists how they incorporate patient voices in their research. First, replied Swenor, include researchers with disabilities. Second, partner with people in the community at all stages of a project and provide meaningful compensation. She said that many of her colleagues subscribe to the idea that the experts are the people with diverse perspectives in the disability community. She disagreed vehemently with the view among some researchers that including people with lived experience makes research less vigorous. Petersen did as well, adding,
When we say that a person with a disability and their work are less legitimate because of that disability, we are normalizing a certain other type of experience that trends White, trends male, trends certain gender and sex and sexual experience, and excludes older people, and has an array of other characteristics attached to it. In fact, a person who has a disability and has trained in a research process program brings additional insight that can be applied in the same way that others who have personal characteristics bring perspectives that help them to better develop research questions and expand the field.
Chin said he and his colleagues include full-blown, community-based participatory research in their work. He added that having at least three people with lived experience on an advisory committee leads to better work on improving health equity. “It is clear that the lived experience of persons with disabilities is underutilized,” he said.
Mitra commented that she leads a research center where 50 percent of the team members have disabilities. Her center also involves people with lived experience as researchers on studies funded by the National Institutes of Health (NIH). The last two NIH requests for applications focused on disability and included the need to include the voices of people with lived experience. However, the grants resulting from those requests do not allow compensating those individuals for any accommodations they need to make to participate in the project.
Publication Details
Copyright
Publisher
National Academies Press (US), Washington (DC)
NLM Citation
National Academies of Sciences, Engineering, and Medicine; Health and Medicine Division; Board on Health Care Services; Alper J, Spicer CM, Applegate A, editors. Health Disparities in the Medical Record and Disability Determinations: Proceedings of a Workshop. Washington (DC): National Academies Press (US); 2024 Sep 20. 6, Mitigating the Effect of Health Disparities in the SSA Disability Determination Process.