14

Overall Conclusions

This chapter presents thirteen overall conclusions derived by the committee from evidence presented throughout the report, along with narrative summaries of evidence supporting these conclusions. Each chapter (Chapters 2–13) ends with a summary of key points based on the evidence presented in that chapter. The overall conclusions presented in this chapter cut across those previous chapters and reflect the committee’s assessment of the full body of evidence as it relates to the Social Security Administration’s (SSA’s) disability determinations. The committee formulated thirteen overall conclusions in seven categories: (1) collection of data on sex and gender identity, (2) variability of documentation for transgender and gender diverse (TGD) people and people with variations in sex traits (VSTs) in medical records, (3) Listings with sex-specific diagnostic criteria, (4) chest binders and considerations for pulmonary function tests, (5) alternative growth failure measurements, (6) inclusive language in Listings, and (7) guidance for adjudicators on assessing disability for TGD applicants and applicants with VSTs. In accordance with its statement of task, the committee offers conclusions but not recommendations.

Conclusions presented below are based on best available data. The committee acknowledges that clinical decisions need to be made—and are being made—even when evolving scientific data are limited, and that SSA needs a reasonable approach for adjudicating claims for TGD applicants and applicants with VSTs. The conclusions presented here represent the consensus of committee experts based on their clinical expertise and professional judgment.

Collection of Data on Sex and Gender Identity

Recent advances in electronic health records and health information technology provide opportunities to increase the visibility of TGD patients and patients with VSTs through the routine collection of sexual orientation and gender identity (SOGI) data. SOGI data collection—which allows for health care providers and patients to record sexual orientation, gender identity, sex recorded at birth, information about VSTs, and similar information within individual patient charts—is a key strategy for reducing the many health disparities faced by TGD people and people with VSTs. For TGD patients and patients with VSTs, robust SOGI data collection can enhance meaningful dialogue during clinical encounters, promote appropriate preventive screenings based on anatomy, reduce unequal and discriminatory health care practices, and foster respectful and patient-centered long-term care. Furthermore, comprehensive SOGI data collection enables accurate interpretation of common sex-specific measurements that are important for disability evaluations. Yet despite the importance of collecting these data and the capacity for medical records to facilitate that process, SOGI data collection and documentation by health care providers remains highly variable. Medical records therefore cannot be relied upon to capture accurately all patients with TGD or VST identity or lived experience.

Conclusion 1. Medical records alone may fail to identify the gender diversity of TGD applicants or appropriately capture biological characteristics relevant to applicants with VSTs. SSA application forms do not ask applicants about gender identity or sex recorded at birth. Because these patient characteristics matter for disability determination, the committee concludes giving applicants the option to enter their own gender identity and sex recorded at birth information when submitting a disability application would enable a more accurate assessment.

This approach would help fill the gaps that result when health care providers and institutions do not collect the patient data that SSA may need to adjudicate accurately the applications for disability benefits of TGD people and people with VSTs. Best practices include allowing people to enter gender identity separately from sex recorded at birth, offering a range of appropriate response options and providing a free-text response option, such as “I use something else.” It is also important to include either separate questions about VSTs or free-text options that allow people with VSTs to share their individual experience. SSA forms give prompts to applicants to “explain in remarks” additional details about various questions on the application (e.g., citizenship status, military service), and similar prompts could be appropriate for applicants to describe additional information related to gender identity or sex recorded at birth. SSA might also benefit

from including such optional questions in its National Beneficiary Survey to help it better understand the lived experience of those people it serves who are TGD or have VSTs. It is important to provide information to applicants and survey respondents on why these questions are being asked and how these data may impact disability determinations. In addition, best practices call upon health care providers and institutions to consistently refer to patients by their correct name (i.e., their chosen and presently used name) and pronouns in all records. SSA could conduct a review of its processes to ensure they meet this standard.

Variability of Documentation for Transgender and Gender Diverse People and People with Variations in Sex Traits in Medical Records

Gender-affirming care comprises an array of services for TGD people that may include medical, surgical, mental health, and nonmedical care. There is no “one size fits all” approach to gender-affirming care: health care services provided to TGD people may differ based on when the care was provided (both historically and across the lifespan), differences in access to care, and tailoring of care to the needs of individual patients. Likewise, appropriate care and treatment for people with VSTs is highly variable and condition and patient specific. Medical records specific to care for chronic conditions may not fully describe gender-affirming care or care related to VSTs. In addition, some TGD people and people with VSTs do not seek or are not able to access medical intervention, so one should not assume that TGD or VST identity or lived experience confers any particular type or amount of care.

Conclusion 2. There is considerable observed variability in gender-affirming care across the country for TGD people. This variability may impact documentation in medical records submitted to SSA for disability applications. The committee concludes that SSA would best serve TGD applicants by communicating to them that medical records related to gender-affirming care are likely relevant to certain disability determinations.

Having a sufficiently complete medical record of gender-affirming care is important for disability evaluations, as understanding the nature of any such care (along with its timing and duration) may be important to improve understanding of functional assessment and eligibility for disability benefits.

Conclusion 3. Individuals with VSTs are a heterogeneous group that includes persons with genetic, anatomical, and hormonal variations and/or variations in genitourinary system development affecting the genitourinary tract and reproduction system. The diverse VST

diagnoses may differ as to the extent and type of impact they have on chronic disease and disability. Hence, care and treatment for these diagnoses is variable and patient specific, and medical records that merely list a VST diagnosis may fail to provide sufficient historical information for evaluating the need for disability benefits. The committee concludes that SSA would best serve applicants with VSTs by communicating to them that medical records related to VST care may be relevant to disability applications and their submission is greatly encouraged whenever possible.

Some people with VSTs experience lifelong and ongoing disability, whereas others experience sporadic severe health crises (e.g., experiencing sudden needs for lengthy hospitalization followed by periods of stability) or mental health and/or neurodiversity disabilities associated with VST-related stressors. To provide thorough disability adjudication, SSA needs to have medical records that sufficiently document care related to the management of VSTs. Given that a VST diagnosis is often made during early childhood and adolescence, records from many years ago may be relevant to the adjudication process; however, the committee acknowledges that old records may be very difficult to obtain, and an undue burden should not be placed on applicants to locate such records.

Listings with Sex-Specific Diagnostic Criteria

Listings for respiratory disease, childhood growth failure, and chronic kidney disease include sex-specific diagnostic criteria. Clinicians interpreting tests and measurements for these conditions must select an appropriate reference sex—male or female—to predict lung function, growth failure, or kidney function, respectively. For many applicants for disability benefits, sex recorded at birth is the appropriate reference sex. However, selecting the reference sex for TGD people or people with VSTs is often difficult, and it is not always clear which sex is the most appropriate to use.

Errors in the selection of reference sex may happen for a number of reasons, including incorrect sex recorded in the patient chart (especially when the medical record does not ask for gender identity separately from sex recorded at birth), failure to ask patients about VSTs, failure to ask patients about relevant gender-affirming care (e.g., timing of any hormone therapy), biases held by providers that negatively influence patient care, and the absence of guidelines for interpreting relevant tests and measurements for TGD patients and patients with VSTs. Moreover, even when medical records contain a complete and accurate accounting of patient sex and gender identity characteristics such that providers are aware they are assessing TGD patients or patients with VSTs, providers may lack training

and experience in caring for these patients and may not know how or when TGD or VST lived experience impacts patient care and clinical decision making. Thus, providers may have to make difficult or arbitrary judgment calls about which reference sex is most appropriate for a given patient at a given time.

Gender-affirming hormone therapy (GAHT) further complicates this picture. In the case of pulmonary function, some research suggests that “hormonal sex at puberty”—the hormone that was predominant during puberty (estrogen or testosterone) and that influenced the shape and size of the thoracic cavity—may be a more accurate metric for choosing a reference sex for a pulmonary function test for individuals who initiated pubertal delay and began GAHT during puberty. For this portion of the population, affirmed gender—not sex recorded at birth—may be the more appropriate reference sex for this test. Similarly, some researchers propose, for the purposes of calculating body mass index (BMI), continuing to use the growth chart corresponding to sex recorded at birth during pubertal delay but switching to the affirmed-sex growth chart once GAHT has been initiated. In the case of assessing chronic kidney disease, the receipt of GAHT at any time (not just during puberty) is an important consideration for assessing kidney function, but conclusions cannot be drawn regarding the accuracy of either the male or female gender-based estimating equations for estimated glomerular filtration rate (eGFR) in populations receiving GAHT. To aid in clinical decision making for patients receiving GAHT, it may be appropriate for providers to interpret lung function, adolescent growth, and kidney function in comparison with both reference sex ranges (“dual calculations”) or use measurements that are independent of sex, when available. However, these approaches to patient care have yet to be prospectively validated for clinical use. Where people with VSTs take GAHT, the above approaches may be appropriate, however, research is limited on the impact of GAHT in populations with VSTs. The committee notes that people with VSTs take hormone therapy for a multitude of reasons beyond gender-affirming care and care is extremely individualized; the impact of various hormone therapies on sex-specific measurements is unknown.

Conclusion 4. Sex recorded at birth may be the appropriate reference sex to use for some—but not all—TGD applicants and applicants with VSTs who apply for disability benefits by submitting medical records with sex-specific measurements of pulmonary function (i.e., spirometry and diffusion capacity of the lungs for carbon monoxide [DLCO] measurements), growth failure (i.e., weight-for-length and BMI-for-age measurements), or kidney function (i.e., estimated glomerular filtration rate [eGFR]). However, SSA’s disability criteria use the term “gender” in reference to pulmonary function and growth failure measurements,

which may incorrectly indicate that “gender identity” is the determining factor in the interpretation of these measurements.

SSA might consider changing the language in the respiratory disorder Listings¹ and Listings related to childhood growth failure² to replace the word “gender” with “sex recorded at birth.” Making this change would allow for clearer assessments for some TGD applicants and some applicants with VSTs. Using the phrase “sex recorded at birth” rather than simply “sex” clarifies that sex as recorded at birth is the important patient characteristic for these specific assessments, not “sex” as may be recorded on other administrative records (e.g., driver’s license, passport). The current SSA Listings for chronic kidney disease³ do not use gender- or sex-specific language, and language changes are not necessary. The committee stresses that even though sex recorded at birth is important for the assessments listed here, this does not negate the importance of gender identity for disability applicants in general or for other types of disability assessments. In addition, the committee acknowledges that for some people with VSTs, sex assignment at birth (which becomes the sex recorded on birth certificates and medical records) may not be straightforward and can change after the initial determination.

Conclusion 5. Sex recorded at birth may not be the appropriate reference sex for assessing pulmonary function or growth failure for some TGD people or people with VSTs, particularly for those who began pubertal delay and GAHT during puberty. While considerable research is needed to determine best approaches, the committee concludes that SSA would best serve applicants who receive GAHT by using the lowest value recorded (e.g., lower percentile for BMI-for-age and weight-for-length/lower spirometry or DLCO reading) to determine the presence of disability.

Some providers use “dual calculations” (e.g., interpreting spirometry using both male and female reference ranges) to enhance decision making for patients receiving GAHT, but use of this approach is not universal, and most assessments are likely to use whatever sex is listed in the medical record (even if this information is inaccurate). Medical records may also contain calculations from both charts because providers were mistaken or lacked training on which chart to use. Given these challenges, the committee concludes that when a disability applicant’s medical record contains

___________________

¹ Listing of Impairments 3.02, 3.03, 3.04, 103.02, and 103.04.

² Listing of Impairments 105.08B, as applied across 100.05, 103.06, 104.02, 105.08, 106.08, and 114.11(I).

³ Listing of Impairments 6.05A3 and 106.05C.

calculations from both reference ranges, SSA will best serve applicants who receive GAHT by using the lowest recorded value to determine disability under respiratory and childhood growth failure Listings.

Conclusion 6. Medical records submitted to SSA may provide an inaccurate estimation of kidney function in people who receive GAHT. The committee concludes that where medical records contain GFR measurements based on both the male and female coefficients, SSA would best serve applicants who receive GAHT by using measured GFR (when available) or the lowest eGFR value recorded to determine the presence of disability.

Comprehensive data are lacking regarding the bias introduced by using binary sex coefficients in eGFR calculations for TGD people and people with VSTs, and clear conclusions cannot be drawn regarding the accuracy of either the male or female sex-based estimating equations for eGFR in populations receiving GAHT. Until further research clarifies the influence of GAHT on biomarkers that are important for calculating eGFR and determining kidney function, existing eGFR measurements for people who receive GAHT may be inaccurate and may overestimate kidney function. Given these challenges, SSA might consider using the lowest eGFR value recorded in the medical record for applicants receiving GAHT to determine disability under chronic kidney disease Listings.

Conclusion 7. In order to improve access to an accurate interpretation of pulmonary function, kidney function, or growth percentile, SSA may offer a consultative exam to TGD applicants and applicants with VSTs where SSA sees evidence in the medical record that measurements were or may have been calculated using an incorrect reference sex or where dual calculations were not provided but may be appropriate.

In such cases, it may be beneficial, where clinically appropriate, to order a test that does not contain sex-specific criteria (e.g., pulse oximetry for evaluation of cystic fibrosis) or that offers more precise measurement of function (e.g., measured GFR to assess kidney function). Where more specific tests are not available or clinically appropriate, SSA could instruct the consultative examiner to interpret results using both male and female reference ranges. This approach would ensure fairness for TGD people and people with VSTs who have lacked access to providers trained to interpret their results thoughtfully and with specific consideration of individual patient histories (e.g., duration and timing of GAHT). It is essential that individual applicants always have the choice of whether to submit to a consultative examination without any detriment to their application if declined.

Chest Binders and Considerations for Pulmonary Function Tests

Chest binders are a common gender-affirming practice for transgender men and other TGD individuals. Some people with VSTs also use chest binders. Chest binding is not merely an elective activity to enhance appearance, but an essential daily practice for reducing chest dysphoria (i.e., distress from unwanted breast development) and improving mental health outcomes. While minimal research exists on the impact of chest binders on pulmonary function, some patients may wear a chest binder during administration of a pulmonary function test (PFT). The committee strongly believes providers should not require TGD people to remove chest binders prior to undergoing a PFT.

Conclusion 8. Evidence that an individual applying for disability benefits wore a chest binder during a PFT should not disadvantage their application.

As many people who bind do so daily and for extended periods of time (often exceeding 10 hours each day), SSA needs to be aware that when a chest binder has been removed for the purposes of undergoing a PFT, that measurement of lung function may not reflect daily lived experience. The medical record may not indicate whether a chest binder was worn during a PFT, but when the medical record contains different PFT values, SSA needs to be aware that those differences could be attributable to the fact that the patient wore a binder during one test but not another. For this reason, the committee concludes that SSA would best serve TGD applicants and applicants with VSTs by using the lowest recorded PFT value to determine disability under respiratory disorder Listings.

Alternative Growth Failure Measurements

Literature and guidelines call for the use of alternative measures of body composition along with BMI-for-age, given concerns about the utility and accuracy of BMI-for-age as the sole measure. BMI-for-age may be an especially poor measure for identifying growth failure in children, as it is not considered a reliable indicator for children below the third percentile of weight. In addition, because BMI does not differentiate between lean body mass and body fat, it may not adequately measure elements of body composition that matter for children who are experiencing growth failure related to underlying chronic disease.

Conclusion 9. Studies clearly show that for many children, BMI is a suboptimal measure for identifying growth failure. BMI can be

particularly inaccurate in identifying growth failure in TGD adolescents receiving GAHT, which may affect linear growth and fat distribution.

In these adolescents, linear growth velocity may be a better indicator of growth failure. Similarly, a large-percentage weight loss strongly indicates malnutrition that places an individual at very high risk for growth failure. SSA might consider including alternative measures across various childhood growth failure Listings, as well as changing the window of time during which measurements must be taken. This approach might provide for more accurate assessment of not just TGD youth but all pediatric populations applying for disability benefits.

Inclusive Language in Listings

Increasingly, national organizations are moving away from using gendered language that restricts cancers and gynecological conditions to one’s gender or sex recorded at birth. Simple updates to language—for example, changing “women with cervical cancer” to “people with cervical cancer”—serve to include all populations that may have or may be at risk of developing these conditions, regardless of gender identity or sex recorded at birth.

Conclusion 10: National organizations, such as the American Cancer Society and the American Society of Clinical Oncology, have begun to call for a more gender-inclusive approach to cancer screening, treatment, and care, whereby cancer terms reflect the organ in which they arise instead of being tied to gender. SSA might best serve disability applicants by removing gendered language from its cancer Listings.

The current SSA Listings for cancers of the prostate gland, testicles, and penis⁴ exemplify this approach and are consistent with how the field is shifting toward inclusiveness in cancer language. SSA might consider changing the Listing for “Cancers of the female genital tract”⁵ to “Cancers of the uterus, uterine cervix, vulva, vagina, fallopian tubes, and ovaries,” which would align this Listing with organs rather than gender. Such a change would clarify that this Listing can apply to anyone who can meet the SSA criteria, regardless of their sex recorded at birth or gender identity. Similarly, SSA might consider removing the differentiation of women versus men within criteria under primary peritoneal carcinoma⁶ and instead base

___________________

⁴ Listing of Impairments 13.24, 13.25, and 13.26.

⁵ Listing of Impairments 13.23.

⁶ Listing of Impairments 13.00K7.

this condition on the histopathology. This approach recognizes that primary peritoneal mesothelioma can occur in all people regardless of the presence or absence of ovaries, while primary peritoneal adenocarcinoma is almost exclusively diagnosed in people born with ovaries.

Conclusion 11. Using more inclusive language in Listings would help achieve appropriate disability adjudication for TGD people and people with VSTs living with HIV. The committee concludes that SSA might best serve applicants with HIV by removing sex-specific language from its HIV disability criteria.

SSA might consider changing the Listing category from “HIV infection manifestations specific to women”⁷ to “Gynecologic manifestations of HIV,” to make this Listing inclusive of and appropriate for all people with HIV who exhibit these medical conditions. Such an inclusive approach promotes equitable care by recognizing that gendered representations in HIV screening and treatment may misidentify patient care needs.

Guidance for Adjudicators on Assessing Disability for Transgender and Gender Diverse Applicants and Applicants with Variations in Sex Traits

Similar to health care providers who make difficult choices about appropriate chronic disease management for TGD patients and patients with VSTs, experts involved in the disability determination process must determine how TGD or VST lived experience may impact various disability applications (if at all) and whether additional information is needed to aid in accurate adjudication. In addition, these experts must understand how the multiple social determinants of health that disproportionately impact TGD applicants and applicants with VSTs intersect with chronic disease and disability.

Conclusion 12. Given the complexities of the disability determination process for some TGD applicants and some applicants with VSTs, experts involved in the disability adjudication process may need guidance on how aspects of gender-affirming care or other aspects of health, treatment, and care impact disability determinations. SSA might consider supporting adjudicators in these complex disability determinations by delivering national-level trainings and consultive services.

Guidance to adjudicators can take many forms, including (1) training on the intersection of disability with TGD/VST lived experience; (2) access to national- or regional-level medical and mental health experts who can

___________________

⁷ Listing of Impairments 14.00F7.

consult on disability applications submitted by TGD applicants and applicants with VSTs (the Veteran Health Administration’s e-consult might serve as a model); (3) clear statements within the Program Operations Manual System that medical records related to gender-affirming care and care for people with VSTs may be relevant for accurate disability evaluation; and (4) communications to applicants that medical records related to gender-affirming care and care for VSTs may be relevant to certain disability applications and that it may be appropriate to use the “remarks” section on disability applications to describe how TGD or VST lived experience has impacted their health or opportunity to receive appropriate care for their impairment(s). Consistent training and guidance across the 54 Disability Determination Services offices is important, as geographic variability or lack of local expertise may mean that individual offices are not equipped to deliver trainings or provide consultation on these topics.

Conclusion 13. Multilevel obstacles to optimal health occur across the life course of TGD people and people with VSTs. These barriers contribute to a greater burden of co-occurring physical and mental health conditions and poorer overall health outcomes compared with the general population. SSA might consider supporting adjudicators in making determinations for TGD applicants and applicants with VSTs by including in guidance and trainings content on the structural disadvantages faced by these populations and how they may impact disability.

While many applicants for disability benefits experience challenges with their health, TGD applicants and applicants with VSTs face significant and well-described structural disadvantages, including intrapersonal factors (internalized transphobia due to stigma and stress), interpersonal factors (e.g., lack of access to knowledgeable providers, exposure to discriminatory and suboptimal health care, consequences of implicit bias), and structural factors (e.g., lack of access to health insurance, inequitable access to employment opportunities). In addition, TGD people and people with VSTs are members of multiple diverse communities and may experience concomitant barriers to optimal health due to additional dimensions (e.g., race, ethnicity, age, socioeconomic status, and other domains) that influence their experiences with health care and the social drivers of health.

Thus, TGD people and people with VSTs may have systematically experienced delayed preventive screenings, late detection of chronic disease (and the predisposing conditions that contribute to chronic disease), and inadequate care to address chronic health concerns. These barriers coalesce, leading to poorer self-care, inadequate management of chronic disease, and poorer quality of life. These factors may ultimately result in delayed and/or

inadequate care for multiple impairments that form the basis of a disability application. It is essential that disability adjudicators remain attuned to the structural and social-contextual factors that shape the applications of TGD people and people with VSTs. For example, adjudicators might receive guidance and training to consider, as part of a disability evaluation, potential stigmatizing language found in medical records that signals suboptimal care delivery.